I believe in hope. Everyone, I believe, carries hope about something; otherwise life would be perfect in every way. Hope can be very simple, or complex; something that will likely happen or a tiny light at the end of a tunnel that seems to keep extending, so the light may get dimmer.
5 years ago, some strange sense of hope, along with a lot of other stuff, pulled me through a bad case of depression from medications which conflicted with each other. With a lot of help, I overcame it.
I hoped, and hope now, that others don't have to experience anything like that. I hope our mental health system improves. Even stronger, I hope that the stigma of mental illness goes away, so people are not afraid to seek help. That hope is one of those where the tunnel seems to keep extending itself, and the light at the end appears daunting and dim.
I hoped I could physically improve from what MS had done to me. When the light at the end of that tunnel seemed almost gone, overnight I started taking Ampyra and have been physically improving for over 2.5 years. Today, with some help, I walked up the 13 stairs at my parents' house instead of scooting on my rear. Although so small, it was a great moment. I will always hope I can run again.
I had a dim hope that one day I could get a Masters degree. It took 4.5 years, but I got it. I hope I'll be able to utilize it more some day. That day may be close, but it's been close previously. So I continue to hope.
There are so many things where, in a sense, I rely on hope.
I believe that the birth of Christ created a lot of hope. Each year, we can be reminded that in the midst of complete chaos, there is always hope.
I hope for peace, in my own life, the lives of others, and the world. I believe Christ brought a glimpse of that into the world with his birth. In the midst of complete chaos, a beautiful child was born in a manger, there was a pause, and there was peace.
In our lives, we can pause and find the same peace, if only for a moment or so. Those moments of peace can generate, or re-ignite, hope.
In these 12 days of Christmas, my hope is that people, including me, can find moments to experience peace, and that the peace, among so much chaos in the world, can build hope. For me it's hope in getting rid of stigma, for continued improvement in physical abilities, for utilizing my Masters degree more, and for so many other places where there are tunnels with light at the end, sometimes near and sometimes far.
For me, there's a little baby inspiring the peace that leads to hope.
I believe in hope.
Peace.
Wednesday, December 26, 2012
Monday, December 10, 2012
6 steps
I went to a physical therapy (PT) appointment last week... I go to 2 places - at this place, the PT works with me on my Bioness. For those of you who don't know, Bioness for me are cuffs, just below each knee. There's a heel sensor (very small) that goes under the insert in my shoe. When I strike my heel in walking, somehow that sends a signal to these cloth pieces in the cuff, under my knee. Then a signal is sent by electric device under the cloth pieces to muscles, and this somehow gets my foot to kick up and forward. And to have these devices means I am physically doing better. To use them, Bioness, you have to be able to land on your heel when stepping and I didn't used to be able to do that. My therapist today (at a different place) said, "Oh yes, all the people with MS who are on Ampyra are coming in here now and looking into Bioness." But that's a digression.
I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side. The PT explained why it does that. With my MS, I had braces (before the Bioness). With and even before the braces, in order to walk, I would swing my legs out to the sides. Think exaggerated penguin walk. The PT explained that I actually learned to do this so I could walk. It's a different explanation and I like it. The other explanation wouldn't have any learning in it - I just did it. Regardless, in learning to walk this way, it became habit.
Enter Bioness. First I got it for the right leg and the the left. I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking. But what bugs me the most now is my left foot sticking out. If I think about it, I can stop it. It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter. Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists. To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly. When I'm walking for speed, I ignore these things.
This is all actually a digression. While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently. I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky. But he had a determined look on his face. With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker. I think this was his first attempt at walking in awhile.
I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time. He didn't know if he could do that but he did. The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took. And so he made it. He has started something based on a great deal of determination. It reminds me of things I have tried since Ampyra. And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it. 6 steps. It's so small, but it's also so big and important.
Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture." He was there with a walker. I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have? My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working. But the people who get further with this drug are the people who really work at it.
In times whe I feel discouraged, I can remember these people, and how I must continue to fight. I may not be near where I want to be. But we all must start from somewhere. I don't think he had MS. But for so many things, one just never knows what can happen, where science can take us in the future. So, we keep going, we refuse to give up, and we're ready for any new science miracle.
Perhaps 6 steps for him. For me, I don't know. I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.
6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.
This is the good stuff. Life throws other curve balls at the same time. Right before and after I have turned 40 I have had new challenges outside of me getting physically better. Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God. Maybe I'll do that. I think God wants me focus on beating MS anyway.
Peace.
I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side. The PT explained why it does that. With my MS, I had braces (before the Bioness). With and even before the braces, in order to walk, I would swing my legs out to the sides. Think exaggerated penguin walk. The PT explained that I actually learned to do this so I could walk. It's a different explanation and I like it. The other explanation wouldn't have any learning in it - I just did it. Regardless, in learning to walk this way, it became habit.
Enter Bioness. First I got it for the right leg and the the left. I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking. But what bugs me the most now is my left foot sticking out. If I think about it, I can stop it. It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter. Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists. To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly. When I'm walking for speed, I ignore these things.
This is all actually a digression. While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently. I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky. But he had a determined look on his face. With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker. I think this was his first attempt at walking in awhile.
I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time. He didn't know if he could do that but he did. The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took. And so he made it. He has started something based on a great deal of determination. It reminds me of things I have tried since Ampyra. And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it. 6 steps. It's so small, but it's also so big and important.
Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture." He was there with a walker. I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have? My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working. But the people who get further with this drug are the people who really work at it.
In times whe I feel discouraged, I can remember these people, and how I must continue to fight. I may not be near where I want to be. But we all must start from somewhere. I don't think he had MS. But for so many things, one just never knows what can happen, where science can take us in the future. So, we keep going, we refuse to give up, and we're ready for any new science miracle.
Perhaps 6 steps for him. For me, I don't know. I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.
6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.
This is the good stuff. Life throws other curve balls at the same time. Right before and after I have turned 40 I have had new challenges outside of me getting physically better. Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God. Maybe I'll do that. I think God wants me focus on beating MS anyway.
Peace.
Saturday, November 17, 2012
Why (or why not) church?
Dear God,
Last Sunday during adult education, we talked about why people go to church, or why they don't. It was interesting to hear perceptions on why people choose whether or not to go. I said that one reason I go is because, during the most difficult parts of my life, it (church) has somehow been the most help. But it's more than that.
It's interesting to hear people talk about youth in church, especially confirmation, and some people think we should require more to be confirmed - "it's too easy." I think why? Sometimes, if it is so much work, will all those teens really want to keep coming back when they are done? I don't know.
When I was a teen, I saw my friends who were part of the same (big) church. They did a lot together - it seemed exciting. So God, given that my grandfather was a minister, why didn't I get that? My friends went through a lot for confirmation and I didn't. I read a book, with my brother, and then we talked with the minister about it. It was a book for adults, with 3 main sections - the 2 Creeds and the Lord's Prayer. It didn't make sense to me and I would fall asleep reading. My brother had great conversations with the minister about it. Occasionally my opinion (which I didn't have, because I didn't understand the book) was asked and that was it. And God, while I'm at it here, I really feel like if I hadn't pushed it, if I hadn't asked to be confirmed, nothing would have happened. And for me, confirmation was just about being able to receive communion. That's why I let my daughter receive communion when she expressed interest. This is somewhat of a tangent. But God, given this history of not a lot being required to be confirmed, you'd think church wouldn't be important to me. But it was (and is). My godparents came to my confirmation and that was so important to me. And then I continued to be religious throughout high school, whether or not my family went to church or not. So God, since everyone seems to have someone who influenced their faith life perhaps at this stage, what was happening to me? It really confuses me, and in a strange way, I suppose I'm a bit angry that I can't say, "Why yes! It was this person who really influenced my faith and is why I go to church today." There's really nothing other than me wanting to see my grandfather's Bible, knowing he baptized me, etc. There was intrigue there.
Then people talk about after confirmation as the time young adults leave church, and I'm thinking about college. They also talk about people in their 20s and why they don't go to church, in general. Again, I'm unique. I went to college where almost no one went to church, but I went most weeks, with this background of... not much. When I was diagnosed with MS, one of my first thoughts out of nowhere was wanting to meet with the minister on campus. With the church secretary, the three of us prayed together in the basement of the church and I felt this strange presence of something. Was that you, God? Even when I went to church growing up, we never learned that there might be this strange sense someday. I didn't grow up with the background of God having an actual presence; in fact, I grew up in an environment where that wasn't a thought. I then went to church more often because it seemed natural. I did a bible study at the minister's house, and watched his small farm when his family went on vacation.
I moved to Minnesota and went to a church there, in my 20s. No one really seemed to pay attention to someone in their 20s in church, and when I moved back to Colorado and started "church shopping," I found the same thing - no one noticed me - and that didn't bother me because I was looking at many different churches. At one church, people waved their hands in the air, seemed to make a political statement, and I was gone. At another small church, I darted out right after communion because it seemed small. I wanted to find a place where there was a group of people my age. I didn't find such a place. I asked at one church and was told I was actually too young - their singles group was people in their 30s. Then I found the church where I currently go. I don't remember anyone meeting me there either. I went to the new member orientation once, then stopped, and then came back a few months later. And now I go every week.
So God, why church? Over time, the church where I go has become like family. Some people there annoy me - you don't pick your family - but most people are awesome. If I don't go to church, things just don't seem quite right. When I don't want to go because something bad is going on in my life, it never fails that church comes and turns things around. Why, God? That doesn't make any sense.
So I now go to church every week with my daughter. I do other things with the church. I can't imagine no church - seems there would be a great void.
Why church? I don't know. It's confusing, God, how it happened that I go to church regularly. I wonder if I'll ever be able to sort out why I became a person who goes to church every week.
God?
Peace.
Last Sunday during adult education, we talked about why people go to church, or why they don't. It was interesting to hear perceptions on why people choose whether or not to go. I said that one reason I go is because, during the most difficult parts of my life, it (church) has somehow been the most help. But it's more than that.
It's interesting to hear people talk about youth in church, especially confirmation, and some people think we should require more to be confirmed - "it's too easy." I think why? Sometimes, if it is so much work, will all those teens really want to keep coming back when they are done? I don't know.
When I was a teen, I saw my friends who were part of the same (big) church. They did a lot together - it seemed exciting. So God, given that my grandfather was a minister, why didn't I get that? My friends went through a lot for confirmation and I didn't. I read a book, with my brother, and then we talked with the minister about it. It was a book for adults, with 3 main sections - the 2 Creeds and the Lord's Prayer. It didn't make sense to me and I would fall asleep reading. My brother had great conversations with the minister about it. Occasionally my opinion (which I didn't have, because I didn't understand the book) was asked and that was it. And God, while I'm at it here, I really feel like if I hadn't pushed it, if I hadn't asked to be confirmed, nothing would have happened. And for me, confirmation was just about being able to receive communion. That's why I let my daughter receive communion when she expressed interest. This is somewhat of a tangent. But God, given this history of not a lot being required to be confirmed, you'd think church wouldn't be important to me. But it was (and is). My godparents came to my confirmation and that was so important to me. And then I continued to be religious throughout high school, whether or not my family went to church or not. So God, since everyone seems to have someone who influenced their faith life perhaps at this stage, what was happening to me? It really confuses me, and in a strange way, I suppose I'm a bit angry that I can't say, "Why yes! It was this person who really influenced my faith and is why I go to church today." There's really nothing other than me wanting to see my grandfather's Bible, knowing he baptized me, etc. There was intrigue there.
Then people talk about after confirmation as the time young adults leave church, and I'm thinking about college. They also talk about people in their 20s and why they don't go to church, in general. Again, I'm unique. I went to college where almost no one went to church, but I went most weeks, with this background of... not much. When I was diagnosed with MS, one of my first thoughts out of nowhere was wanting to meet with the minister on campus. With the church secretary, the three of us prayed together in the basement of the church and I felt this strange presence of something. Was that you, God? Even when I went to church growing up, we never learned that there might be this strange sense someday. I didn't grow up with the background of God having an actual presence; in fact, I grew up in an environment where that wasn't a thought. I then went to church more often because it seemed natural. I did a bible study at the minister's house, and watched his small farm when his family went on vacation.
I moved to Minnesota and went to a church there, in my 20s. No one really seemed to pay attention to someone in their 20s in church, and when I moved back to Colorado and started "church shopping," I found the same thing - no one noticed me - and that didn't bother me because I was looking at many different churches. At one church, people waved their hands in the air, seemed to make a political statement, and I was gone. At another small church, I darted out right after communion because it seemed small. I wanted to find a place where there was a group of people my age. I didn't find such a place. I asked at one church and was told I was actually too young - their singles group was people in their 30s. Then I found the church where I currently go. I don't remember anyone meeting me there either. I went to the new member orientation once, then stopped, and then came back a few months later. And now I go every week.
So God, why church? Over time, the church where I go has become like family. Some people there annoy me - you don't pick your family - but most people are awesome. If I don't go to church, things just don't seem quite right. When I don't want to go because something bad is going on in my life, it never fails that church comes and turns things around. Why, God? That doesn't make any sense.
So I now go to church every week with my daughter. I do other things with the church. I can't imagine no church - seems there would be a great void.
Why church? I don't know. It's confusing, God, how it happened that I go to church regularly. I wonder if I'll ever be able to sort out why I became a person who goes to church every week.
God?
Peace.
Monday, November 12, 2012
Stuck in "Park"
Life has been so much better for me since Ampyra entered it over 2 years ago. There are downsides - I get leg spasms that are worse, and which are a message for me to walk. But seemingly nothing really has gone physically wrong - I didn't get any sicknesses that other people would get - I didn't get any of Lori's sicknesses. I have had milk and dairy cravings. But I was to the point that I thought I might be immune to everything.
But then other chaos from the world finally caught up with me, grabbed me, and I was caught. The chaos forced my body to find the limit - the limit not even Ampyra could conquer. The crud hit me, fast and furious.
It hit on a day I had gone to help some physical therapy (PT) students. There were 2 sessions - one in the morning and one in the afternoon. In the morning I was fine - to others I might have not looked good at all, but I have come a long way. In the afternoon, I suddenly thought the room was hot. I was with a different group of PT students and it seemed nothing was working and my fingers and feet were numb (usually this means the room is too hot for me). By the time I went back to my van, I could barely get in. And by the time I picked up my daughter and was handed the pen to sign her out of the after-school program, the realization hit me that I couldn't grip the pen and couldn't write. We went home and I couldn't get myself on our lift (I walk onto the lift, but I couldn't lift my foot). My daughter brought a wheelchair behind me and I sat, and she pushed me onto the lift. In a matter of hours, a mild fever rendered me completely useless. That is MS - the surprises come from seemingly nowhere and are never fun. Scary? Well, not with a fever - it's more of a feeling of breaking things into steps, but the steps are so small - get inside, find the Tylenol - getting Tylenol, as silly as it may seem, is like winning a big trophy.
Immediately, I started taking Tylenol. That evening and night never seemed to end, with my body alternating between hot and cold, no feeling in my hands, legs, or feet. The next morning I did try to get up. I had put my wheelchair right next to the bed (usually it's in a different room), and I made it there. To get the Tylenol, I had to go to the floor and drag myself to it. I didn't wake up Dave because I guess I am just that stubborn and I could handle this. I took the day off of work - I don't do that (I don't really get sick), and I just sat, taking Tylenol every 4 hours.
Next I got a huge cold. I went to work for 2 days, came home, and collapsed. I was very sick. On one of those days I went to a couch in our sunroom and put my legs up. I couldn't stop coughing (a dry cough) and had to do a series of relaxation strategies to stop. I fell asleep. When I woke up I didn't want to move. An hour later I sat up. God, really, is this ever going to end? And then, would my legs feel better?
There were strange feelings in my legs through all of this. I recall wondering what my usual self feels like. Ampyra was still flowing, but I wasn't walking. I had the strange sensation that I suppose would be like if a person got in their car, kept the car in "Park," and then pushed halfway on the gas pedal and kept it going. The car wants to go, but it's in "Park." Nothing can take it out of "Park." What a waste. The person would sit there in the car, knowing it was a complete waste, but still keeping that gas pedal down, going nowhere, wondering if at some point, they could get out of "Park" and go somewhere.
Almost as quickly as I was hit by this thing, I recovered. On Friday, I decided to take a sick day because I didn't feel I was pulling through. I felt like I was starting each day at 50% and finishing each day like the car in Park with the gas going. So Friday, I rested. I couldn't sleep much, but I could move a bit. On Friday, I stood straight for the first time and it felt so good, like I was still in Park but I took off the gas pedal. By Friday night I was walking some and on Saturday morning, I stood up and felt like I could move. By Monday, I was back at work, not quite doing what I had, but close. The car was out of Park. If I pushed too much, I would feel hot again, which was strange.
Sometimes I don't know why I decide to write about various things, and this would be one of those times. Perhaps it's so I can try to explain how things can be different for someone like me - if I'm a little sick, it might be different than for someone else. A little fever below 100 degrees results in nothing working. At the same time, I can "pop" back, and I think Ampyra helps with that.
In the next week, I was back to working on standing straight, making my legs go straighter when I walk, etc.
Faith is only a small part of this. I remember sitting on the couch and thinking, God, you have got to be kidding me. When going through motions of survival with MS and another sickness, it's a thought process of "I need to be there," "I need to move my legs there," "I need Tylenol." And then "thank you, God" or "you have got to be kidding me God," or "God, am I going to make it through this?"
There were no answers from God. But faith doesn't always need answers. Faith is sometimes, in the middle of chaos, where we can find
Peace.
But then other chaos from the world finally caught up with me, grabbed me, and I was caught. The chaos forced my body to find the limit - the limit not even Ampyra could conquer. The crud hit me, fast and furious.
It hit on a day I had gone to help some physical therapy (PT) students. There were 2 sessions - one in the morning and one in the afternoon. In the morning I was fine - to others I might have not looked good at all, but I have come a long way. In the afternoon, I suddenly thought the room was hot. I was with a different group of PT students and it seemed nothing was working and my fingers and feet were numb (usually this means the room is too hot for me). By the time I went back to my van, I could barely get in. And by the time I picked up my daughter and was handed the pen to sign her out of the after-school program, the realization hit me that I couldn't grip the pen and couldn't write. We went home and I couldn't get myself on our lift (I walk onto the lift, but I couldn't lift my foot). My daughter brought a wheelchair behind me and I sat, and she pushed me onto the lift. In a matter of hours, a mild fever rendered me completely useless. That is MS - the surprises come from seemingly nowhere and are never fun. Scary? Well, not with a fever - it's more of a feeling of breaking things into steps, but the steps are so small - get inside, find the Tylenol - getting Tylenol, as silly as it may seem, is like winning a big trophy.
Immediately, I started taking Tylenol. That evening and night never seemed to end, with my body alternating between hot and cold, no feeling in my hands, legs, or feet. The next morning I did try to get up. I had put my wheelchair right next to the bed (usually it's in a different room), and I made it there. To get the Tylenol, I had to go to the floor and drag myself to it. I didn't wake up Dave because I guess I am just that stubborn and I could handle this. I took the day off of work - I don't do that (I don't really get sick), and I just sat, taking Tylenol every 4 hours.
Next I got a huge cold. I went to work for 2 days, came home, and collapsed. I was very sick. On one of those days I went to a couch in our sunroom and put my legs up. I couldn't stop coughing (a dry cough) and had to do a series of relaxation strategies to stop. I fell asleep. When I woke up I didn't want to move. An hour later I sat up. God, really, is this ever going to end? And then, would my legs feel better?
There were strange feelings in my legs through all of this. I recall wondering what my usual self feels like. Ampyra was still flowing, but I wasn't walking. I had the strange sensation that I suppose would be like if a person got in their car, kept the car in "Park," and then pushed halfway on the gas pedal and kept it going. The car wants to go, but it's in "Park." Nothing can take it out of "Park." What a waste. The person would sit there in the car, knowing it was a complete waste, but still keeping that gas pedal down, going nowhere, wondering if at some point, they could get out of "Park" and go somewhere.
Almost as quickly as I was hit by this thing, I recovered. On Friday, I decided to take a sick day because I didn't feel I was pulling through. I felt like I was starting each day at 50% and finishing each day like the car in Park with the gas going. So Friday, I rested. I couldn't sleep much, but I could move a bit. On Friday, I stood straight for the first time and it felt so good, like I was still in Park but I took off the gas pedal. By Friday night I was walking some and on Saturday morning, I stood up and felt like I could move. By Monday, I was back at work, not quite doing what I had, but close. The car was out of Park. If I pushed too much, I would feel hot again, which was strange.
Sometimes I don't know why I decide to write about various things, and this would be one of those times. Perhaps it's so I can try to explain how things can be different for someone like me - if I'm a little sick, it might be different than for someone else. A little fever below 100 degrees results in nothing working. At the same time, I can "pop" back, and I think Ampyra helps with that.
In the next week, I was back to working on standing straight, making my legs go straighter when I walk, etc.
Faith is only a small part of this. I remember sitting on the couch and thinking, God, you have got to be kidding me. When going through motions of survival with MS and another sickness, it's a thought process of "I need to be there," "I need to move my legs there," "I need Tylenol." And then "thank you, God" or "you have got to be kidding me God," or "God, am I going to make it through this?"
There were no answers from God. But faith doesn't always need answers. Faith is sometimes, in the middle of chaos, where we can find
Peace.
Saturday, November 3, 2012
Poking and prodding
About a week ago I got to go spend some time with students learning to be physical therapists (PTs). My therapist had asked if I wanted to do this and I thought it sounded neat - a way to educate using real patients, because for awhile, PT students may not get a lot of interaction with patients, and they have to practice various tests on themselves.
3 students were assigned to me in the morning and then 3 in the afternoon. They did various tests on me to do things like check reflexes, strength, and range of motion. It was interesting to watch as they had not done much of this previously, and had not been exposed to MS, so I found myself explaining Ampyra in detail to them.
Several questions they had were interesting:
"Have you fallen much lately?" To this I asked them to define a fall. I think people think of falling as such an easy thing to understand. But really, it's not that simple. With my MS, I know when I am getting tired, and I might actually plan to sit somewhere, which I suppose could be judged as a fall. Their definition was the unexpected event, not planned at all. This rarely happens because I can work though things so that instead of falling, I am sitting, purposely.
"Is having a progressive disease really hard emotionally?" That's a loaded question! I think perhaps people look at things totally differently from the outside. Since Ampyra, I've been improving physically, so I don't feel that MS is draining me emotionally. In fact, being on Ampyra has done the opposite for me. The problem with seeing students 1 time is they haven't how far I have come. But the main answer to this question, is that often it is not the disease that is emotionally draining as much as factors outside the disease that drive stress, create an emotional drain, and impact the disease. These factors are part of everyday life - home, work, etc. It's the external factors that are more draining than the actual disease itself.
"How do you get out of bed in the morning?" This was a question asked in the afternoon. Something strange happened that day. In the morning I felt fine. In the afternoon, the room felt hot. My body felt like it was going numb. I was supposed to be rolling on and off a mat, which was not like my bed, but apparently the PT students thought it was enough like a bed to wonder how I managed. They also wondered if I had a grab bar to help get out of bed. Wow - did I look that bad? I don't have trouble getting in and out of bed like they were thinking.
What I chose to do was to explain something about MS to them. Someone with MS may come to physical therapy and perhaps at some point they may want help with something like a bed. But a neurologist said it best when he said, "There's one thing everyone who comes into my office with MS wants and that is to walk." That's it. Yes, we want to move around our houses, get in and out of bed, have a life. But when it really comes down to what is most important, I think we just want to walk.
As I finished that day and took a real downhill spiral into an evil fever and cold, I thought about the day and whether I would want to do something like that again. And I surprised myself. While always wanting to help people, my "calling" is not to go and provide education in the form of being poked and prodded by students. To me, that points out everything that is wrong, rather than all that is right. I can educate students on what people with MS really want, and get them past MS being the emotional driver (because the emotional drivers are external to MS many times), but something about doing that in this context didn't work for me.
A big part of it is all the poking and prodding I experienced on the way to diagnosis. I was diagnosed at a teaching hospital and went through so many tests at an age when most kids are in college and learning to be independent. After college, I worked at another teaching hospital where there was more poking and prodding. So educating the PT students somehow brought back memories of trying to figure out what was wrong with me, the frustration of all the various tests done again, and again, and again. For me, I've been there, done that, and am moving on.
Right after I was diagnosed, I went to see the Pastor at our college. That was, I suppose, the beginning of the end of the poking and prodding. Now that I had a diagnosis, one "treatment" was talking and praying with him, and there was no poking and prodding. And from there, life could continue.
Many people with MS go through yearly MRIs and I think they get poked on a regular basis, but I have found ways to cut back on that. These last 2 years, I have really been able to look forward, to focus on the positive, and that's the way I'd like to continue.
Kudos to people who can help PT students on a regular basis. I suppose we all have our different, unique gifts we can offer to educate people on so many things, and the experience of working with PT students for me was valuable in showing me there are many others areas in which to focus.
Peace.
3 students were assigned to me in the morning and then 3 in the afternoon. They did various tests on me to do things like check reflexes, strength, and range of motion. It was interesting to watch as they had not done much of this previously, and had not been exposed to MS, so I found myself explaining Ampyra in detail to them.
Several questions they had were interesting:
"Have you fallen much lately?" To this I asked them to define a fall. I think people think of falling as such an easy thing to understand. But really, it's not that simple. With my MS, I know when I am getting tired, and I might actually plan to sit somewhere, which I suppose could be judged as a fall. Their definition was the unexpected event, not planned at all. This rarely happens because I can work though things so that instead of falling, I am sitting, purposely.
"Is having a progressive disease really hard emotionally?" That's a loaded question! I think perhaps people look at things totally differently from the outside. Since Ampyra, I've been improving physically, so I don't feel that MS is draining me emotionally. In fact, being on Ampyra has done the opposite for me. The problem with seeing students 1 time is they haven't how far I have come. But the main answer to this question, is that often it is not the disease that is emotionally draining as much as factors outside the disease that drive stress, create an emotional drain, and impact the disease. These factors are part of everyday life - home, work, etc. It's the external factors that are more draining than the actual disease itself.
"How do you get out of bed in the morning?" This was a question asked in the afternoon. Something strange happened that day. In the morning I felt fine. In the afternoon, the room felt hot. My body felt like it was going numb. I was supposed to be rolling on and off a mat, which was not like my bed, but apparently the PT students thought it was enough like a bed to wonder how I managed. They also wondered if I had a grab bar to help get out of bed. Wow - did I look that bad? I don't have trouble getting in and out of bed like they were thinking.
What I chose to do was to explain something about MS to them. Someone with MS may come to physical therapy and perhaps at some point they may want help with something like a bed. But a neurologist said it best when he said, "There's one thing everyone who comes into my office with MS wants and that is to walk." That's it. Yes, we want to move around our houses, get in and out of bed, have a life. But when it really comes down to what is most important, I think we just want to walk.
As I finished that day and took a real downhill spiral into an evil fever and cold, I thought about the day and whether I would want to do something like that again. And I surprised myself. While always wanting to help people, my "calling" is not to go and provide education in the form of being poked and prodded by students. To me, that points out everything that is wrong, rather than all that is right. I can educate students on what people with MS really want, and get them past MS being the emotional driver (because the emotional drivers are external to MS many times), but something about doing that in this context didn't work for me.
A big part of it is all the poking and prodding I experienced on the way to diagnosis. I was diagnosed at a teaching hospital and went through so many tests at an age when most kids are in college and learning to be independent. After college, I worked at another teaching hospital where there was more poking and prodding. So educating the PT students somehow brought back memories of trying to figure out what was wrong with me, the frustration of all the various tests done again, and again, and again. For me, I've been there, done that, and am moving on.
Right after I was diagnosed, I went to see the Pastor at our college. That was, I suppose, the beginning of the end of the poking and prodding. Now that I had a diagnosis, one "treatment" was talking and praying with him, and there was no poking and prodding. And from there, life could continue.
Many people with MS go through yearly MRIs and I think they get poked on a regular basis, but I have found ways to cut back on that. These last 2 years, I have really been able to look forward, to focus on the positive, and that's the way I'd like to continue.
Kudos to people who can help PT students on a regular basis. I suppose we all have our different, unique gifts we can offer to educate people on so many things, and the experience of working with PT students for me was valuable in showing me there are many others areas in which to focus.
Peace.
Wednesday, October 24, 2012
One small boy
I went to a track on Oct 13 to try to get around it in less than 20 minutes. It had been a very long time since I had been back - timing was always just off. As I started to walk it really seemed so simple - I visualized myself picking up the pace on the final straightaway and through the final turn. But it was not so simple. Well, the first half was simple, right until I reached the spot where I thought I would pick up the pace. Then it got continually more difficult until the end, when I was just focused on each step, and trying to land on my heel with each step. If I don't land on my heel when wearing the Bioness contraption I wear, then the device turns on in a strange way and I have to just stand until it decides to pause. If you know me and read this, then when you see me pausing, I probably missed a heel strike and am waiting for the machine to "shut up."
But this post is not so much about all of that. This post is about 1 little boy.
As I was walking the back stretch, I saw a small wheelchair, and a boy just sitting in the wheelchair. The lady who must have been his mom was looking at me - not staring with the piercing stare of many, but instead with interest - that I was walking.
I finished and sat - whew! I had finished! I broke 20 min - in fact, I walked in 18:55. So I also broke 19 and in this strange way this is important. See, in high school, I was getting faster and faster and ran 19:10. Being that was the beginning of my senior season, I was all set to break 19 minutes. But that never happened. I got a strange injury, then woke up one morning with tingly legs just like a year before that, and again the tingly feeling went away after a few weeks. But I never got faster again. So I never, ever, broke 19 minutes. In some really strange way, breaking 19 minutes walking once around a track with a walker makes me feel like I broke that PR.
But this post is not so much about that, except in a round-about way.
When I finished, the woman wheeled her son to me, as another kid of hers had just finished one of those little kid football games. Someone else had a walker that belonged to the little boy. The woman just stopped and said to her son in a non-chalant manner, "See, she is walking."
I looked at him. I make up that his mom would like to see him try to walk more than he must be doing. And he looked at me with a bit of interest - this woman was walking, then sitting to wheel - she did both, just like him.
So I said "yes, I'm walking. And it looks like you can walk too. And you should. It takes a lot of work. I've been working on walking around a track for 2 years and it used to take me an hour." Then I paused, thought, and said, "and I know, it looks really strange. I might be completely bent over. But walking is really good for you so you should do it, and work on it."
He looked at me and smiled. His mom asked him if he could say thank you, "and use your words." And he said, using words, "thank you."
And then we left. Always, I have thought how odd it must look that I am out there, walking around a track with a walker. People must think this is very odd. Perhaps I should wear a sign that says something like "former runner... needs time on track." And I joke about no one else with a walker joining me.
Now I think, this is worth it. I don't necessarily want to be an inspiration to those who can walk and run and do things I can't. But maybe that one little boy will think about walking more. Maybe one day it will be him who will join me on the track and we can race.
On this disability awareness month, there is a theme called "what can YOU do?" I suppose I can show this little boy that you never know what your body can do until you try.
It's a sentimental story that on some level is completely, well, a bit too much.
But on the other hand, it's not a novel. It's real.
So for the few people who read this, do you ever wonder what YOU can do with the things you love to do?
Peace.
But this post is not so much about all of that. This post is about 1 little boy.
As I was walking the back stretch, I saw a small wheelchair, and a boy just sitting in the wheelchair. The lady who must have been his mom was looking at me - not staring with the piercing stare of many, but instead with interest - that I was walking.
I finished and sat - whew! I had finished! I broke 20 min - in fact, I walked in 18:55. So I also broke 19 and in this strange way this is important. See, in high school, I was getting faster and faster and ran 19:10. Being that was the beginning of my senior season, I was all set to break 19 minutes. But that never happened. I got a strange injury, then woke up one morning with tingly legs just like a year before that, and again the tingly feeling went away after a few weeks. But I never got faster again. So I never, ever, broke 19 minutes. In some really strange way, breaking 19 minutes walking once around a track with a walker makes me feel like I broke that PR.
But this post is not so much about that, except in a round-about way.
When I finished, the woman wheeled her son to me, as another kid of hers had just finished one of those little kid football games. Someone else had a walker that belonged to the little boy. The woman just stopped and said to her son in a non-chalant manner, "See, she is walking."
I looked at him. I make up that his mom would like to see him try to walk more than he must be doing. And he looked at me with a bit of interest - this woman was walking, then sitting to wheel - she did both, just like him.
So I said "yes, I'm walking. And it looks like you can walk too. And you should. It takes a lot of work. I've been working on walking around a track for 2 years and it used to take me an hour." Then I paused, thought, and said, "and I know, it looks really strange. I might be completely bent over. But walking is really good for you so you should do it, and work on it."
He looked at me and smiled. His mom asked him if he could say thank you, "and use your words." And he said, using words, "thank you."
And then we left. Always, I have thought how odd it must look that I am out there, walking around a track with a walker. People must think this is very odd. Perhaps I should wear a sign that says something like "former runner... needs time on track." And I joke about no one else with a walker joining me.
Now I think, this is worth it. I don't necessarily want to be an inspiration to those who can walk and run and do things I can't. But maybe that one little boy will think about walking more. Maybe one day it will be him who will join me on the track and we can race.
On this disability awareness month, there is a theme called "what can YOU do?" I suppose I can show this little boy that you never know what your body can do until you try.
It's a sentimental story that on some level is completely, well, a bit too much.
But on the other hand, it's not a novel. It's real.
So for the few people who read this, do you ever wonder what YOU can do with the things you love to do?
Peace.
Friday, October 19, 2012
A time to consider
This past Wed, we (where I work - the people with disabilities business resource group) had our 5th annual disability awareness dinner. The first year we put this together, we wondered how we would find enough people to attend and if we could make the dinner happen. It has grown from that first year of about 80 people to well over 100. Many different "types" of people come - people with disabilities, family members, friends, supporters of people with disabilities, employees where I work, representatives from businesses who provide support services, and I'm sure I'm missing something. This year, representatives from at least 30 organizations were there. Those are the "stats" of the dinner.
This year, for me and some others who have been there for multiple years, it felt like it was the best one. Why? That's hard to say. Nothing changed significantly in terms of our approach to it. Our organization's leaders showed up for the first time, but that wasn't what gave it this better feel. People may have different reasons for why, if they are part of the group who thought it was better this year... why they thought so.
I've given thought and think I know, at least in part, why it has been good and was better this year. It has to do with a general environment that has grown in society. On Tues, I watched the presidential debate. I made silly comments on Facebook about the debate, comments which had nothing to do with politics. This debate seemed about who could attack who better - I started wondering if they might throw punches at some point. There have been 2 debates and interrupting the moderator, by both candidates, occurs. Respect for the moderator is tossed out the window. Neither candidate really answers the questions, but in a method called "pivoting," instead turns their answer into what they want to say. Then the battle begins about who said or did what in the past, why that was bad, and the debates are about making the other person look as bad as possible. It's very negative.
The same occurs in Congress. No matter which party is "in charge," it's all about making the other party look bad. When I think of all this, it's a display, from "the top" of our country of how we treat each other, which isn't good. Downstream from that, many people are not happy in jobs - this is true of many people in many companies - and you can read about it. People are not treated well and there's a negative atmosphere. How we treat each other is so important. Someone asked me recently what I would do, as a leader, if I had bad news to deliver to a group. My answer was that I would start with the good - what is going right - from that I think the bad can be turned - if we see how the good is working and what makes things successful. I don't get that opportunity much at all, but what I'm suggesting is not done, starting with things like presidential debates, which to me almost grant permission to skip the positive and go straight for the attack.
Our dinner was very different than what I just described. I think we threw out the negative. There were no politics there. It was an atmosphere where people could connect with others if they wanted. As a lead for this, I didn't get to eat much, but I got to talk to people. Since people have been coming for multiple years, it feels like connecting with friends. There was a positive energy where we talked about who was there, who brought materials for people to take home, etc.
Each year we've had a group called Phamaly perform. This group is the only professional theatre group comprised only of people with disabilities, and it's located in Denver. Their performance brought both laughter and feeling to the dinner. Since they have been performing each year, it feels like we are making that connection each year as well. Their performance this year brought many people to tears for various reasons.
I talked with one person about the importance of building bridges. There certainly are problems. But instead of sticking to a problem, build bridges and that is how we move on.
At the end of the dinner event, I had this really satisfied, almost peaceful feeling.
I should note the dinner almost didn't happen. There was a question of funding and we weren't sure we could have it at the same place. But I plugged forward with initial efforts, and the 3 of us who put it together found ways, through very busy and challenging schedules, to make it happen.. Near the dinner, we were all overwhelmed with work, I got sick, and another one was fighting fatigue. But with all the doubts of getting started and all the obstacles thrown in our paths, that feeling that positive energy made the dinner worth hurdling many obstacles.
I still carry the positive energy with me. I have been exhausted for 2 days, wanting to sleep but not being able to do so. The day after the dinner, I had emails of thanks but no one around me was aware of the dinner (well, maybe 1 or 2 people were). It can be difficult to keep focused on that sense of community, of the positive feelings, of the smiles and hugs from friends, of the praise that it went well, of the comments of our strong leadership which made the dinner happen again.
Approaching new situations, I'd like to think I can use this model of being positive, to change things and bring some things back where they used to be. That's what I think is needed all over the place. I would like to find a way to refuse the negative, or to at least find a way to channel it into positive.
To anyone who reads this who was there that night, thanks for helping create a unique environment of positive energy.
Peace.
This year, for me and some others who have been there for multiple years, it felt like it was the best one. Why? That's hard to say. Nothing changed significantly in terms of our approach to it. Our organization's leaders showed up for the first time, but that wasn't what gave it this better feel. People may have different reasons for why, if they are part of the group who thought it was better this year... why they thought so.
I've given thought and think I know, at least in part, why it has been good and was better this year. It has to do with a general environment that has grown in society. On Tues, I watched the presidential debate. I made silly comments on Facebook about the debate, comments which had nothing to do with politics. This debate seemed about who could attack who better - I started wondering if they might throw punches at some point. There have been 2 debates and interrupting the moderator, by both candidates, occurs. Respect for the moderator is tossed out the window. Neither candidate really answers the questions, but in a method called "pivoting," instead turns their answer into what they want to say. Then the battle begins about who said or did what in the past, why that was bad, and the debates are about making the other person look as bad as possible. It's very negative.
The same occurs in Congress. No matter which party is "in charge," it's all about making the other party look bad. When I think of all this, it's a display, from "the top" of our country of how we treat each other, which isn't good. Downstream from that, many people are not happy in jobs - this is true of many people in many companies - and you can read about it. People are not treated well and there's a negative atmosphere. How we treat each other is so important. Someone asked me recently what I would do, as a leader, if I had bad news to deliver to a group. My answer was that I would start with the good - what is going right - from that I think the bad can be turned - if we see how the good is working and what makes things successful. I don't get that opportunity much at all, but what I'm suggesting is not done, starting with things like presidential debates, which to me almost grant permission to skip the positive and go straight for the attack.
Our dinner was very different than what I just described. I think we threw out the negative. There were no politics there. It was an atmosphere where people could connect with others if they wanted. As a lead for this, I didn't get to eat much, but I got to talk to people. Since people have been coming for multiple years, it feels like connecting with friends. There was a positive energy where we talked about who was there, who brought materials for people to take home, etc.
Each year we've had a group called Phamaly perform. This group is the only professional theatre group comprised only of people with disabilities, and it's located in Denver. Their performance brought both laughter and feeling to the dinner. Since they have been performing each year, it feels like we are making that connection each year as well. Their performance this year brought many people to tears for various reasons.
I talked with one person about the importance of building bridges. There certainly are problems. But instead of sticking to a problem, build bridges and that is how we move on.
At the end of the dinner event, I had this really satisfied, almost peaceful feeling.
I should note the dinner almost didn't happen. There was a question of funding and we weren't sure we could have it at the same place. But I plugged forward with initial efforts, and the 3 of us who put it together found ways, through very busy and challenging schedules, to make it happen.. Near the dinner, we were all overwhelmed with work, I got sick, and another one was fighting fatigue. But with all the doubts of getting started and all the obstacles thrown in our paths, that feeling that positive energy made the dinner worth hurdling many obstacles.
I still carry the positive energy with me. I have been exhausted for 2 days, wanting to sleep but not being able to do so. The day after the dinner, I had emails of thanks but no one around me was aware of the dinner (well, maybe 1 or 2 people were). It can be difficult to keep focused on that sense of community, of the positive feelings, of the smiles and hugs from friends, of the praise that it went well, of the comments of our strong leadership which made the dinner happen again.
Approaching new situations, I'd like to think I can use this model of being positive, to change things and bring some things back where they used to be. That's what I think is needed all over the place. I would like to find a way to refuse the negative, or to at least find a way to channel it into positive.
To anyone who reads this who was there that night, thanks for helping create a unique environment of positive energy.
Peace.
Sunday, October 7, 2012
October
Any month has different themes associated with it. One of the themes for October is National Disability Employment Awareness Month. Whenever I hear overall unemployment statistics reported, I tend to go to something called "Table A-6" which gives the employment numbers for people with disabilities alongside those without disabilities, to see if things are getting better. Note this has nothing to do with politics - it has to do with culture, people with disabilities, and their acceptance into a world that used to separate them completely.
In October, there are efforts at showcasing what people with disabilities can and do offer toward the workforce. There's a theme out there called "What CAN you do?" to emphasize the abilities of people with disabilities.
Unemployment statistics tend to be reported for various minority groups, but an exception is people with disabilities. I wonder how many people know, that of all the minority groups, the "prize" for highest unemployment rate goes to people with disabilities. People with disabilities not only have the highest unemployment rate, but they have, by far, the lowest participation rate. What does this mean?
The unemployment rate for people with disabilities in September was 13.5 percent. For those without disabilities, it was 7.3 percent (note this is different than the 7.8 reported because it took out people with disabilities - I assume). But we are doing better. A year ago the rate was 16.1. This seems easy enough to understand. But what is the participation rate?
The participation rate is those who are actually engaged in the job market. So a person with a disability who is not able to work at all is a "non-participant." But if someone with a disability is actually looking for work, then they are participating. The participation rate for those without disabilities is almost 70 percent. The participation rate for people with disabilities is only 21 percent. One might look at this number and think perhaps most people with disabilities are not able to work. Sometimes this might be true. Part of the intent of this month is to change the stereotype of people with disabilities being unable to work. Part of the intent of the work many people do surrounding people with disabilities is to change cultural perceptions, like the perception they can't work, or the perception that they don't want to advance in their career.
These are some things people have asked me or said, mostly because I have a disability (and I am pretty sure of this because I then watch them interact with others and not ask the same questions).
- You work?
- I guess you need something to do.
- I guess you need some money.
- How do you ger to work?
- That's nice that you get out of the house.
- So, you do typing stuff?
- Oh, you are going to school. Are you trying to get your Associates degree then? It would be nice to have something beyond high school.
So if someone just happens upon this post and has no idea who I am, then they should know these statements and questions are annoying. I actually went back to school for my Masters, to prove, mostly to myself, that I could get a Masters degree. I want to use my degree as well, and didn't go for it just for fun. I have nothing against an Associates degree, but I find it annoying that my educational level is assumed. Yes, I work. I work full-time, I am married, have a 9 year old daughter, a dog, 2 cats, and a guinea pig. As a sidenote, our house is a mess - I don't know if it's because of my disability or having too many pets or something else. I get out of the house other times too! I am actively part of a church, I drive my daughter seemingly everywhere, and yes, I get out of the house to work, but that's not why I work, nor is that we need the money (we do need money, but doesn't everyone?). I am also a geek, so I do type, but I have a brain and like to think what I do is utilizing my brain. Sidenote: I wouldn't win any typing awards - definitely not a strength of mine.
These kinds of stereotypes, for those who have disabilities, are common. I talk to others and we laugh at the questions we get. Once employed, people with disabilities can have great careers. But people with disabilities can struggle with misperceptions of others, to the point that if they lose their job somehow, they may think it is not worth working. Misperceptions include that a person has a job and therefore, they are set! Put them in a box and happiness is achieved. The reality is that people with disabilities want more. The upcoming generation doesn't necessarily know people may think this way, and they may be in for a shock. Other wrong perceptions are that because a person has a physical disability, they can't think as well, or if a disease like MS causes some people to have memory problems, people may look for memory problems just because someone has MS. If you say you can't find your keys and you have MS, people may assume you have memory problems. Knowing this, I don't misplace keys. If it does happen at some point :), I'm not telling.
This month is a celebration of what people with disabilities CAN do, while at the same time being realistic and spelling out reality, the reality of a culture that used to put people with disabilities on the sideline. Changes have happened, culture has shifted. But are we where we want to be yet? How will we know?
We will know when we can look at companies and see 1 in 5 (the number of people with disabilities) of employees having a disability, and disclosing disability (many with mental disabilities like bipolar or traumatic brain injury do not say they have a disability for fear of stereotyping). We will also know when we look at leadership and see the same 1 in 5 leaders with disabilities.
We will know when there aren't daily email feeds of 10 lawsuits about companies breaking the law.
We have this month and celebrations behind culture change. For the upcoming generation, let's hope that culture change continues, so a person is truly not known by their disability, but for what and how much they can bring to the employment world.
Peace.
In October, there are efforts at showcasing what people with disabilities can and do offer toward the workforce. There's a theme out there called "What CAN you do?" to emphasize the abilities of people with disabilities.
Unemployment statistics tend to be reported for various minority groups, but an exception is people with disabilities. I wonder how many people know, that of all the minority groups, the "prize" for highest unemployment rate goes to people with disabilities. People with disabilities not only have the highest unemployment rate, but they have, by far, the lowest participation rate. What does this mean?
The unemployment rate for people with disabilities in September was 13.5 percent. For those without disabilities, it was 7.3 percent (note this is different than the 7.8 reported because it took out people with disabilities - I assume). But we are doing better. A year ago the rate was 16.1. This seems easy enough to understand. But what is the participation rate?
The participation rate is those who are actually engaged in the job market. So a person with a disability who is not able to work at all is a "non-participant." But if someone with a disability is actually looking for work, then they are participating. The participation rate for those without disabilities is almost 70 percent. The participation rate for people with disabilities is only 21 percent. One might look at this number and think perhaps most people with disabilities are not able to work. Sometimes this might be true. Part of the intent of this month is to change the stereotype of people with disabilities being unable to work. Part of the intent of the work many people do surrounding people with disabilities is to change cultural perceptions, like the perception they can't work, or the perception that they don't want to advance in their career.
These are some things people have asked me or said, mostly because I have a disability (and I am pretty sure of this because I then watch them interact with others and not ask the same questions).
- You work?
- I guess you need something to do.
- I guess you need some money.
- How do you ger to work?
- That's nice that you get out of the house.
- So, you do typing stuff?
- Oh, you are going to school. Are you trying to get your Associates degree then? It would be nice to have something beyond high school.
So if someone just happens upon this post and has no idea who I am, then they should know these statements and questions are annoying. I actually went back to school for my Masters, to prove, mostly to myself, that I could get a Masters degree. I want to use my degree as well, and didn't go for it just for fun. I have nothing against an Associates degree, but I find it annoying that my educational level is assumed. Yes, I work. I work full-time, I am married, have a 9 year old daughter, a dog, 2 cats, and a guinea pig. As a sidenote, our house is a mess - I don't know if it's because of my disability or having too many pets or something else. I get out of the house other times too! I am actively part of a church, I drive my daughter seemingly everywhere, and yes, I get out of the house to work, but that's not why I work, nor is that we need the money (we do need money, but doesn't everyone?). I am also a geek, so I do type, but I have a brain and like to think what I do is utilizing my brain. Sidenote: I wouldn't win any typing awards - definitely not a strength of mine.
These kinds of stereotypes, for those who have disabilities, are common. I talk to others and we laugh at the questions we get. Once employed, people with disabilities can have great careers. But people with disabilities can struggle with misperceptions of others, to the point that if they lose their job somehow, they may think it is not worth working. Misperceptions include that a person has a job and therefore, they are set! Put them in a box and happiness is achieved. The reality is that people with disabilities want more. The upcoming generation doesn't necessarily know people may think this way, and they may be in for a shock. Other wrong perceptions are that because a person has a physical disability, they can't think as well, or if a disease like MS causes some people to have memory problems, people may look for memory problems just because someone has MS. If you say you can't find your keys and you have MS, people may assume you have memory problems. Knowing this, I don't misplace keys. If it does happen at some point :), I'm not telling.
This month is a celebration of what people with disabilities CAN do, while at the same time being realistic and spelling out reality, the reality of a culture that used to put people with disabilities on the sideline. Changes have happened, culture has shifted. But are we where we want to be yet? How will we know?
We will know when we can look at companies and see 1 in 5 (the number of people with disabilities) of employees having a disability, and disclosing disability (many with mental disabilities like bipolar or traumatic brain injury do not say they have a disability for fear of stereotyping). We will also know when we look at leadership and see the same 1 in 5 leaders with disabilities.
We will know when there aren't daily email feeds of 10 lawsuits about companies breaking the law.
We have this month and celebrations behind culture change. For the upcoming generation, let's hope that culture change continues, so a person is truly not known by their disability, but for what and how much they can bring to the employment world.
Peace.
Monday, October 1, 2012
Focusing on peace
It was a long, hot summer. The summer was complicated by a hailstorm which destroyed our roof and other things, an invasion of about 10,000 bees, and a broken water heater. Fun continues to happen, it seems, with other, more minor things breaking, and at times it can be overwhelming - I just want back in my house, or, I hope I make it back to my house, or I hope I can get in and out of my house. Although all of this has been happening, I seem to find unexpected diversions, in walking, learning how walking and standing work together in a very complicated way I suppose you might only know if you lost the ability to stand and walk, and then by some miracle got some of it back.
We went to a Labor Day retreat up at a place called Rainbow Trails (Lutheran Camp), in the middle of all the big stuff that was happening in everyday life. The theme for the weekend was peace, and all I could think, was how the heck can I find any kind of peace in my world right now? It seems wherever I turn, there isn't peace - there's chaos. Of course, things could always be worse. I wasn't in the movie theater shooting in Aurora (though I still felt impacted) and I wasn't in the middle of the fire in Colorado Springs (though I had a friend who was temporarily displaced by it, and that impacted me indirectly) and I have been healthier (though I have a friend who is very sick - see a few entries back).
So where is peace in that? We were challenged to find or think of a place where we experienced peace. My daughter found a stream she likes there, and drew a picture of it. Streams provide a sense of peace for me as well, though I think so much has been happening that such things have mostly left my mind.
At this retreat, we had time where we could choose to do activities, , or we could just do nothing - it really was our weekend. The camp is at 8500ft and so it's cooler there. Last year I walked a bunch while I was there. This year I found the same places where I had walked - one is outside in a covered area where I can walk circles. With the heat gone, I found myself suddenly stronger, able to not use the brakes on my walker, and to even do complete turns without the brakes - these are types of challenges I create for myself. Someone asked how much I work out every day. I don't know - I realized I don't really view doing all this as working out. The more I thought about it, walking was giving me the sense of peace I couldn't seem to find.
It's opposite what I would think. I often think of being still, and being still translating into being at peace. But many times when still, my legs start to jump, so it really isn't peaceful. Ampyra wants me to keep moving, and somehow that creates peace. In the mountains, I realized that this walking in circles, where no one bothered me and I could be in my own world, was giving me peace. There could be noise all around me, but in this new version of walking, I found peace.
Recently I found that my second physical therapist is leaving (the first one left after having a baby). Right when it seemed I had something going right, the world was once again turned upside down. Today we met to talk about walking and the things that could help me. With those things, there is somehow peace. Perhaps it is in knowing I am continuing to work on things, no matter how out of control the rest of my world feels.
It is in these times that I look to God and find some sense of support that is difficult to explain. With the whole world around me seeming to be in complete chaos, I find a sense of peace and support that I would never have imagined a few years ago. If you happen to read this and wonder where your peace is when life is so chaotic, you might find it in some very unexpected place. I think everyone can find it - but it's a matter of being very aware of everything happening in the middle of a very chaotic world.
Peace.
We went to a Labor Day retreat up at a place called Rainbow Trails (Lutheran Camp), in the middle of all the big stuff that was happening in everyday life. The theme for the weekend was peace, and all I could think, was how the heck can I find any kind of peace in my world right now? It seems wherever I turn, there isn't peace - there's chaos. Of course, things could always be worse. I wasn't in the movie theater shooting in Aurora (though I still felt impacted) and I wasn't in the middle of the fire in Colorado Springs (though I had a friend who was temporarily displaced by it, and that impacted me indirectly) and I have been healthier (though I have a friend who is very sick - see a few entries back).
So where is peace in that? We were challenged to find or think of a place where we experienced peace. My daughter found a stream she likes there, and drew a picture of it. Streams provide a sense of peace for me as well, though I think so much has been happening that such things have mostly left my mind.
At this retreat, we had time where we could choose to do activities, , or we could just do nothing - it really was our weekend. The camp is at 8500ft and so it's cooler there. Last year I walked a bunch while I was there. This year I found the same places where I had walked - one is outside in a covered area where I can walk circles. With the heat gone, I found myself suddenly stronger, able to not use the brakes on my walker, and to even do complete turns without the brakes - these are types of challenges I create for myself. Someone asked how much I work out every day. I don't know - I realized I don't really view doing all this as working out. The more I thought about it, walking was giving me the sense of peace I couldn't seem to find.
It's opposite what I would think. I often think of being still, and being still translating into being at peace. But many times when still, my legs start to jump, so it really isn't peaceful. Ampyra wants me to keep moving, and somehow that creates peace. In the mountains, I realized that this walking in circles, where no one bothered me and I could be in my own world, was giving me peace. There could be noise all around me, but in this new version of walking, I found peace.
Recently I found that my second physical therapist is leaving (the first one left after having a baby). Right when it seemed I had something going right, the world was once again turned upside down. Today we met to talk about walking and the things that could help me. With those things, there is somehow peace. Perhaps it is in knowing I am continuing to work on things, no matter how out of control the rest of my world feels.
It is in these times that I look to God and find some sense of support that is difficult to explain. With the whole world around me seeming to be in complete chaos, I find a sense of peace and support that I would never have imagined a few years ago. If you happen to read this and wonder where your peace is when life is so chaotic, you might find it in some very unexpected place. I think everyone can find it - but it's a matter of being very aware of everything happening in the middle of a very chaotic world.
Peace.
Saturday, September 15, 2012
Buzzing bees
Lots of people have asked about the story behind the 10,000 bees behind our living room wall. This post tells that "story." Awhile back, it was thought bee stings helped people with MS, so these bees might have worked for that, now disproven, theory.
We moved into our house about 8 years ago. When we moved in, I remember finding a few dead bees in the bookcases in our living room, but the people who lived in our house left a lot behind, so finding a few bees was minor. I'm still wanting to get rid of the refrigerator they left!
There have always been a lot of bees leading to the entrance to our house during the summer. I go in the garage, so I only knew this from my mom when she came to visit. Then my husband (and mom) noticed a lot of bees in a corner area of our roof. It's behind a tree and I'm never there. Eventually my husband had someone come to remove the bees. The guy found 2 nests and a lot of bees. That was 2 years ago. There were still many bees in that area of the roof. It's probably a good thing I couldn't see the bees - I'm not a fan - and they're not a fan of me so this is ok. We keep our distance.
This time, my husband found a company whose mission is, apparently, to remove honey bees and their hives from homes. They showed up one morning and my thought was how unique - this group of 5 was here to look at our bees and they loved doing this sort of thing. They started to look, getting up on the roof and doing some drilling. They found a ton of bees initially. The problem was the bees kept going. There were hives in the roof, but not the main hive. They had to keep going. And the people doing this work - I have never seen anyone as eager to find bees. They told stories of the unusual things they had found. When done with our house, they said they had never seen anything quite like it. As my daughter and I left for Labor Day weekend, they were still drilling in the roof.
That day, Friday, they still hadn't found the main hive but they suspected it was "in the house," not in the roof. Tuesday they returned while I was, thankfully, at work. They found the hive - right behind the wall in our living room where we have all been sitting for 8 years. You couldn't hear them but you could feel the heat from the hive if you felt the wall (according to my husband).
So they began to drill through our living room wall. What they found was amazing. They drilled a 6 inch wide hole from floor to ceiling and there was the hive. It was black, indicating it was more than 5 years old. Then they checked either side and found more of the hive, on either side, toward the ceiling. Apparently these hives can be in a place for 50 years.
By the time I got home they got all the bees. When drilling a hole in drywall, bees that come into the house fly directly to the nearest source of light - our living room window. A special vacuum caught them, along with all the other bees, and now the bees are probably in a happier place. What remains in our house is the repair of the drywall, which looks strangely like a one-eyed giraffe.
This generated cul de sac excitement! All the neighbors came to look at the chunk of wall.
And now the bees are gone.
You would think, given these were honey bees, we would at least get some honey for the huge amount of money we paid to have our wall now look like a one-eyed giraffe. But no. The guy who came 2 years ago? Well, he got 2 hives and then sent some insecticide down where the rest of the bees were. Apparently you shouldn't do this - it can make the problem worse. And then there's no honey.
We're left with the giraffe, but we also got over 300 pictures of the bee removal. Looking through the pictures, I'm glad other people like removing bees, and I'm glad I wasn't home.
And though there is a decline in bees, I can't help but wonder if the bees are just relocating to houses.
Peace.
We moved into our house about 8 years ago. When we moved in, I remember finding a few dead bees in the bookcases in our living room, but the people who lived in our house left a lot behind, so finding a few bees was minor. I'm still wanting to get rid of the refrigerator they left!
There have always been a lot of bees leading to the entrance to our house during the summer. I go in the garage, so I only knew this from my mom when she came to visit. Then my husband (and mom) noticed a lot of bees in a corner area of our roof. It's behind a tree and I'm never there. Eventually my husband had someone come to remove the bees. The guy found 2 nests and a lot of bees. That was 2 years ago. There were still many bees in that area of the roof. It's probably a good thing I couldn't see the bees - I'm not a fan - and they're not a fan of me so this is ok. We keep our distance.
This time, my husband found a company whose mission is, apparently, to remove honey bees and their hives from homes. They showed up one morning and my thought was how unique - this group of 5 was here to look at our bees and they loved doing this sort of thing. They started to look, getting up on the roof and doing some drilling. They found a ton of bees initially. The problem was the bees kept going. There were hives in the roof, but not the main hive. They had to keep going. And the people doing this work - I have never seen anyone as eager to find bees. They told stories of the unusual things they had found. When done with our house, they said they had never seen anything quite like it. As my daughter and I left for Labor Day weekend, they were still drilling in the roof.
That day, Friday, they still hadn't found the main hive but they suspected it was "in the house," not in the roof. Tuesday they returned while I was, thankfully, at work. They found the hive - right behind the wall in our living room where we have all been sitting for 8 years. You couldn't hear them but you could feel the heat from the hive if you felt the wall (according to my husband).
So they began to drill through our living room wall. What they found was amazing. They drilled a 6 inch wide hole from floor to ceiling and there was the hive. It was black, indicating it was more than 5 years old. Then they checked either side and found more of the hive, on either side, toward the ceiling. Apparently these hives can be in a place for 50 years.
By the time I got home they got all the bees. When drilling a hole in drywall, bees that come into the house fly directly to the nearest source of light - our living room window. A special vacuum caught them, along with all the other bees, and now the bees are probably in a happier place. What remains in our house is the repair of the drywall, which looks strangely like a one-eyed giraffe.
This generated cul de sac excitement! All the neighbors came to look at the chunk of wall.
And now the bees are gone.
You would think, given these were honey bees, we would at least get some honey for the huge amount of money we paid to have our wall now look like a one-eyed giraffe. But no. The guy who came 2 years ago? Well, he got 2 hives and then sent some insecticide down where the rest of the bees were. Apparently you shouldn't do this - it can make the problem worse. And then there's no honey.
We're left with the giraffe, but we also got over 300 pictures of the bee removal. Looking through the pictures, I'm glad other people like removing bees, and I'm glad I wasn't home.
And though there is a decline in bees, I can't help but wonder if the bees are just relocating to houses.
Peace.
Friday, August 31, 2012
The best ones
"I write songs... Well, they don't come easily. You have to feel inspired. Like the song we're going to do next; I discovered that song in Africa. I was in a country called Guinea. I went deep into the interior of the country, to a little village, and met with a storyteller. That storyteller went way back into African tradition, and African mythology, and he began to tell the story about the fire, which means the sun, about the water, and about the earth. And he pointed out that all of these things together, can turn the world around. And that all of us are here for a very, very short time. In that time that we're here, there really isn't any difference in any of us, if, we take time out to understand each other. And the question is, do I know who you are; do you know who I am, do we care about each other, 'cause if we do, we can, turn the world around." (Harry Belafonte, on The Muppets show)
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"Hi Beth. How are you?"
It was an instant message from a friend, Crystal (not her real name), and it was a bit odd - hadn't heard from her lately, although occasionally she asked how I was doing. We worked together when I first returned to Colorado. She is a very sweet, kind person, and I knew she has 3 kids, but she wasn't one to talk a lot about herself. She is a private person.
"Hi Crystal! How are you?!!"
"I'm fine. How are you?"
"I'm great. Pretty recently I started a new drug for MS. It's supposed to help with walking but it's done so much more. It's amazing." (and then I went on and on)... So, how are your kids?"
"They're great." Then she told about her daughter, but not a lot. Her daughter is beautiful - I think she could be a model.
There was little else in that conversation. Not long after that, I saw another friend. This friend asked me, "did you know about Crystal?"
"She sent me a message a while back but what's up?"
"She has a brain tumor. They're going to remove it, but there are spots on her lungs, so they think the spots on the lungs were there first."
My jaw dropped. Crystal - nothing ever went wrong for her. As time went on over the past 2 years, I sent her messages when I would see her logged on. The last time was in November. "You know, I'm just trying to get rid of this stuff. I'm really sick of the whole doctor thing." Could she take time off? No, that was gone. Couldn't people donate their time off? She didn't seem to want that. There was the possibility that she and her husband could go to Hawaii in March. But I don't think that ever happened.
It is strange how as I got better, she got worse. I would ask how was, just as she used to ask how I was. And she still would ask about me, every time we talked, just as she always has. It was almost like a break for her, from her life filled with doctors and treatment. She never smoked either. It just doesn't seem quite right.
As I've dealt with this summer, thinking how ridiculously hot it has been, I've thought about Crystal and wondered how she is doing.
I saw my old boss who is also her good friend recently.
"How is Crystal?"
"It's not good, Beth. She hasn't done chemo in awhile. I think she's trying some experimental stuff."
"Is there anything I can do?"
"No. Honestly she doesn't even seem to want me to do anything."
And that is Crystal. Always listening to others, even amidst all she has in her life.
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"There is no, question, about Jim Henson's great artistry, and the extent to which we have all been touched by it. But greater than his artistry was his humanity, and unless you have moved among the wretched of the earth, unless you have spent countless hours on the reservations of this country..., unless you've moved among those who live in ghettos contained by segregation and deprivation, ..., unless you have sat among tribes who care for children that face an existence of hopelessness, ...,, many have no nope, ... they find their own humanity in the humanity of these creations (muppets), and then you will understand the real gift of Jim Henson and his colleagues. Jim Henson said, 'there is hope, there is joy, there is the ability to love and to care, and to find greatness in, difference...' He (Jim Henson) showed me that there is a greater humanity than I ever knew, with those creatures, those muppets. He challenged me on so many levels, and kept me in touch with my own humanity."
(http://www.youtube.com/watch?v=G9Em3vVwsm0)
~Harry Belafonte at Jim Henson's memorial service.
Crystal has shown it - that ability to hope, find joy, love and care, and find greatness in difference. She's one of the best ones.
Peace.
----------------------------------------------------------------------------------------
"Hi Beth. How are you?"
It was an instant message from a friend, Crystal (not her real name), and it was a bit odd - hadn't heard from her lately, although occasionally she asked how I was doing. We worked together when I first returned to Colorado. She is a very sweet, kind person, and I knew she has 3 kids, but she wasn't one to talk a lot about herself. She is a private person.
"Hi Crystal! How are you?!!"
"I'm fine. How are you?"
"I'm great. Pretty recently I started a new drug for MS. It's supposed to help with walking but it's done so much more. It's amazing." (and then I went on and on)... So, how are your kids?"
"They're great." Then she told about her daughter, but not a lot. Her daughter is beautiful - I think she could be a model.
There was little else in that conversation. Not long after that, I saw another friend. This friend asked me, "did you know about Crystal?"
"She sent me a message a while back but what's up?"
"She has a brain tumor. They're going to remove it, but there are spots on her lungs, so they think the spots on the lungs were there first."
My jaw dropped. Crystal - nothing ever went wrong for her. As time went on over the past 2 years, I sent her messages when I would see her logged on. The last time was in November. "You know, I'm just trying to get rid of this stuff. I'm really sick of the whole doctor thing." Could she take time off? No, that was gone. Couldn't people donate their time off? She didn't seem to want that. There was the possibility that she and her husband could go to Hawaii in March. But I don't think that ever happened.
It is strange how as I got better, she got worse. I would ask how was, just as she used to ask how I was. And she still would ask about me, every time we talked, just as she always has. It was almost like a break for her, from her life filled with doctors and treatment. She never smoked either. It just doesn't seem quite right.
As I've dealt with this summer, thinking how ridiculously hot it has been, I've thought about Crystal and wondered how she is doing.
I saw my old boss who is also her good friend recently.
"How is Crystal?"
"It's not good, Beth. She hasn't done chemo in awhile. I think she's trying some experimental stuff."
"Is there anything I can do?"
"No. Honestly she doesn't even seem to want me to do anything."
And that is Crystal. Always listening to others, even amidst all she has in her life.
------------------------------------------------------------------------------------------------------------------------
"There is no, question, about Jim Henson's great artistry, and the extent to which we have all been touched by it. But greater than his artistry was his humanity, and unless you have moved among the wretched of the earth, unless you have spent countless hours on the reservations of this country..., unless you've moved among those who live in ghettos contained by segregation and deprivation, ..., unless you have sat among tribes who care for children that face an existence of hopelessness, ...,, many have no nope, ... they find their own humanity in the humanity of these creations (muppets), and then you will understand the real gift of Jim Henson and his colleagues. Jim Henson said, 'there is hope, there is joy, there is the ability to love and to care, and to find greatness in, difference...' He (Jim Henson) showed me that there is a greater humanity than I ever knew, with those creatures, those muppets. He challenged me on so many levels, and kept me in touch with my own humanity."
(http://www.youtube.com/watch?v=G9Em3vVwsm0)
~Harry Belafonte at Jim Henson's memorial service.
Crystal has shown it - that ability to hope, find joy, love and care, and find greatness in difference. She's one of the best ones.
Peace.
Wednesday, August 8, 2012
Who I am
A few days ago I was talking with someone on the phone who enthusiastically asked if I was watching the Olympics. Yes, I love the Olympics. My favorites are gymnastics and track and field. I really like watching the 1500, especially if there are Americans in the race. But before I could insert what I love, and before he could ask what I love, he asked what I thought of the guy with the disability who ran. It caught me off-guard a bit, because although I was aware of “that” guy, I hadn’t given him that much thought. And so, I thought back a few weeks…
My daughter took tennis lessons for a week (intro, large class, the basics) for an hour each morning, and though most parents seemed to drop their kids off and come back, or sit to the side and read, text, etc., there's were few of us there, watching the kids, taking pictures, and actually talking to each other.
At that time, I thought I really needed to write about the anniversary of the Americans with Disabilities Act (ADA), and all my opinions on it - positive, negative, and in between. It’s important. The ADA was passed 22 years ago with wide bi-partisan support, but 22 years ago, I didn't know of the ADA. I was in high school, and my life consisted mostly of running and music (though good at academics, I really was more athlete and musician - piano and flute). But, I thought, in a way, I just should write something – it’s such a part of my life.
But one of those mornings in watching tennis lessons, I met another parent who had 2 daughters playing tennis. Somehow we got on the subject of running. He was a late bloomer in running, but he knew everything about it now - who's good in the U.S., and who has a shot at the Olympics. It's distance running - he, like me, ran cross country. We both got involved in the sport by just trying it out, knowing almost nothing about it, and becoming pretty good.
The next morning he was again there and I think we were the only parents who didn't drop off our kids. That day we dove into the past, the past of the Colorado running world, which colleges were good and are good, and who is where today. The dad went to Cherry Creek High School and played a lot of tennis, not running until later in high school. I went to Fort Collins High School (FCHS). Both schools have great running programs and now, traditions. My team at FCHS was the first girls' team to win State cross-country. We weren't supposed to win. The next year we weren't supposed to lose. We got third.
He is 6 years older than me and asked if I knew a guy from FCHS who owned all the records back then. I recalled the name, but then another guy got those records in 1989, and I knew him better. The FCHS boys' team also won State cross-country that year we won. Then one of them, Tim, roomed with Adam Goucher at the University of CO, and this guy knew Adam. Adam was awesome in college and then kept getting injured. He and Tim were/are working on making some video together. Adam's wife is in the Olympics this year - Kara Goucher – she was in the marathon. Lots of new news to me.
Melody Fairchild - my year - she lapped everyone in the 2 mile at State her senior year - she was that good, even in the world. Then she seemed to disappear. Apparently she is coaching somewhere.
We talked about the steeple chase, the marathon, the 1500, the 10,000. We laughed at the decathlon and when the athletes have to run the distance part - they're just not built for it.
Then we talked about kids - how much they run these days, and the possible burn-out... and the burn-out that may occur with each sport because it seems kids have to specialize by age 7 or 8.
There was a lot more that wasn't running, like where people went to college (how he met his wife, what she does), and this somehow looped back to running. Then I got caught up on which schools have been the best for running over the past 20 or so years via why he choose to go to school where he did. Neither of us pursued running scholarships. I went to Kenyon because the cross-country team was so fun (great school, too).
All this was great. I was ready for the Olympics.
As we were leaving, he said "By the way, I'm Dale." Of course, I'm Beth. We never talked about my wheelchair and he never asked. That hit me later – I was the person I have always been, engaging in talking about things I will always love. In a different sense than how it usually occurs (I go to be with people with disabilities, and disability seems to vanish), disability was left somewhere else, while we talked.
When I had the conversation with the other person (on the phone), it was just strange. After we hung up, I was a bit confused. Just because I have a disability, should I be expected to be focused on disability? Because I have a disability, do I always need to be the advocate and write on disability-related things? Or can I go back, and can I focus on the Olympics? That’s what I want to do – almost 2 weeks of Olympics. And then there are times when I want to be with others with disabilities.
I’ve found it’s a bit confusing, but that ok. What’s really important is so simple – I’m Beth, running will always be a part of who I am, and I have a disability. But mainly, I’m just Beth.
Peace.
My daughter took tennis lessons for a week (intro, large class, the basics) for an hour each morning, and though most parents seemed to drop their kids off and come back, or sit to the side and read, text, etc., there's were few of us there, watching the kids, taking pictures, and actually talking to each other.
At that time, I thought I really needed to write about the anniversary of the Americans with Disabilities Act (ADA), and all my opinions on it - positive, negative, and in between. It’s important. The ADA was passed 22 years ago with wide bi-partisan support, but 22 years ago, I didn't know of the ADA. I was in high school, and my life consisted mostly of running and music (though good at academics, I really was more athlete and musician - piano and flute). But, I thought, in a way, I just should write something – it’s such a part of my life.
But one of those mornings in watching tennis lessons, I met another parent who had 2 daughters playing tennis. Somehow we got on the subject of running. He was a late bloomer in running, but he knew everything about it now - who's good in the U.S., and who has a shot at the Olympics. It's distance running - he, like me, ran cross country. We both got involved in the sport by just trying it out, knowing almost nothing about it, and becoming pretty good.
The next morning he was again there and I think we were the only parents who didn't drop off our kids. That day we dove into the past, the past of the Colorado running world, which colleges were good and are good, and who is where today. The dad went to Cherry Creek High School and played a lot of tennis, not running until later in high school. I went to Fort Collins High School (FCHS). Both schools have great running programs and now, traditions. My team at FCHS was the first girls' team to win State cross-country. We weren't supposed to win. The next year we weren't supposed to lose. We got third.
He is 6 years older than me and asked if I knew a guy from FCHS who owned all the records back then. I recalled the name, but then another guy got those records in 1989, and I knew him better. The FCHS boys' team also won State cross-country that year we won. Then one of them, Tim, roomed with Adam Goucher at the University of CO, and this guy knew Adam. Adam was awesome in college and then kept getting injured. He and Tim were/are working on making some video together. Adam's wife is in the Olympics this year - Kara Goucher – she was in the marathon. Lots of new news to me.
Melody Fairchild - my year - she lapped everyone in the 2 mile at State her senior year - she was that good, even in the world. Then she seemed to disappear. Apparently she is coaching somewhere.
We talked about the steeple chase, the marathon, the 1500, the 10,000. We laughed at the decathlon and when the athletes have to run the distance part - they're just not built for it.
Then we talked about kids - how much they run these days, and the possible burn-out... and the burn-out that may occur with each sport because it seems kids have to specialize by age 7 or 8.
There was a lot more that wasn't running, like where people went to college (how he met his wife, what she does), and this somehow looped back to running. Then I got caught up on which schools have been the best for running over the past 20 or so years via why he choose to go to school where he did. Neither of us pursued running scholarships. I went to Kenyon because the cross-country team was so fun (great school, too).
All this was great. I was ready for the Olympics.
As we were leaving, he said "By the way, I'm Dale." Of course, I'm Beth. We never talked about my wheelchair and he never asked. That hit me later – I was the person I have always been, engaging in talking about things I will always love. In a different sense than how it usually occurs (I go to be with people with disabilities, and disability seems to vanish), disability was left somewhere else, while we talked.
When I had the conversation with the other person (on the phone), it was just strange. After we hung up, I was a bit confused. Just because I have a disability, should I be expected to be focused on disability? Because I have a disability, do I always need to be the advocate and write on disability-related things? Or can I go back, and can I focus on the Olympics? That’s what I want to do – almost 2 weeks of Olympics. And then there are times when I want to be with others with disabilities.
I’ve found it’s a bit confusing, but that ok. What’s really important is so simple – I’m Beth, running will always be a part of who I am, and I have a disability. But mainly, I’m just Beth.
Peace.
Friday, August 3, 2012
Family
I just received an issue of a publication on MS that I receive quarterly. It's a national publication, widely read, generally somewhat interesting, and a pretty quick read. This quarter's issue focuses on family.
I thought this should be interesting. So I skimmed the main story, got bothered, thought about it, came back hoping I misread it, and was bothered again. To me, here's what the article basically said. MS is a family disease, where family takes many forms (immediate, extended, friends, neighbors, and so on). When a person gets diagnosed with MS, it's not really a "person with MS." It's a "family with MS." Adjustments are made by family members at all times, as family members other than the person with MS take on increased roles and responsibilities. Even though they do this, they don't want to be labeled as "caregivers." Families want to be involved... they want the neurologist to listen to their opinions at appointments. Whenever something happens to the person with MS, it's a team thing. The family adjusts based on what the person with MS can or cannot do.
So that's the summary. People may wonder what bothered Beth in this. There's a lot of good - there are resources to help families, support groups for families. Families are teams working together.
But what got to me about this article is there seemed to be a split. There are articles on MS. There are articles on people with MS. And there are articles on families of people with MS. What I noticed was it didn't seem that the person with MS is necessarily part of the team, or perhaps that was a sidenote (ie the person with MS should communicate their needs so the family can figure things out). Families are adjusting. These families felt they were doing more, which basically seemed to indicate the person with MS was doing less, and less, and less, as time went on. That may be true in some cases - that the person with MS is doing less. The family team didn't really seem to include the person with MS. It just seemed - is the person who wrote the article part of a family team? Did they see the gaps in this article?
Since I'm a person with MS and am part of a family where the team is everyone - immediate, extended, neighbors, friends, colleagues, church community, anyone I meet... I have thoughts. I was diagnosed with MS when I was single. My parents were in Colorado and I was in Ohio. I went to Kenyon College which served as my family at that time. As a family, we discussed how I could remain involved in running, without running on the team. So I wasn't running but I helped as assistant coach.
Fast forward many years to today. Now my husband, daughter, and I live in Colorado. I have lesions on my spine but not my brain, so MS impairs my ability to walk for the most part, and is exacerbated by heat. So, we all know I can't pack the car for vacations. It's easier for someone to retrieve my walker or wheelchair from the car than for me to do it, but I can do it. Essentially, I'm limited physically. But I'm part of the family and though my husband does the physical stuff, I do many things. I figure out my daughter's extra curricular stuff and there's a ton of it. I may not play soccer with my daughter, but we play plenty of games. And check this out - I work! Unfortunately, the people with MS featured in the article didn't work. Most people with MS do work. So we have 2 parents working full-time, and juggling everything together.
If I get hit with an MS event, which hasn't happened for over 2 years due to Ampyra, I think... well, when something did happen I suppose I would warn everyone to stay clear, I apologize in advance, and I'm going on steroids, an emotional roller coaster.
Beyond my husband, daughter, and me, there's a lot of people who are the "extended family." But I hope they don't feel separated from me, doing things not in conjunction with me. There are awesome people at work who help me when needed, and who cheer me on. At church, people help a lot and because of that, I'm a part of things. It's team-based in that we talk about things as simple as "would you like me to get you some coffee?" (Of course, always!)
I didn't like the article I read. I suppose I've now created my own article on how I think family with MS functions.
There's another thing or 2. Yes, the family is diagnosed with MS, and the family is a team, definitely. But the person with MS - that's who goes to bed with it every night, and that's who wakes up each morning not knowing if they will be able to walk that day. So, the person is diagnosed with MS. This is difficult to explain. No matter how much "team" there is, at the end of the day, it's the person's battle. I think, for me, that can be where faith plays a big part, but since that just hit me, I can't explain the faith connection either.
The last little thing is terminology. So often in these articles and when people talk, they use "dealing with" fill in the blank. Instead of "dealing with," I think we should be "living with." I am, right now, living with a jumpy right leg with a laptop on my lap. It's comical in a way - as the leg starts its spasm, the laptop hops around my lap. The jumping goes for about 6 seconds and then there's a break of about 25 seconds. I live with this a lot. I suppose I "deal with it" too, but then "deal with" seems broadened to the point where we're "dealing with" getting a cup of coffee for Beth. (you should smile here, if you know my coffee addiction!) If you read articles, keep an eye out for that terminology.
Jumpy leg and all, it's time for me to get up and walk to stop the jumpy leg.
In conclusion then, as people know others with MS, consider that MS is a family disease to an extent. It's a family disease where the family, inclusive of the person with MS, lives with MS. And at the end of each day, the person with MS goes to bed alone with the disease. And then I pray, so really, I'm never completely alone.
Peace.
I thought this should be interesting. So I skimmed the main story, got bothered, thought about it, came back hoping I misread it, and was bothered again. To me, here's what the article basically said. MS is a family disease, where family takes many forms (immediate, extended, friends, neighbors, and so on). When a person gets diagnosed with MS, it's not really a "person with MS." It's a "family with MS." Adjustments are made by family members at all times, as family members other than the person with MS take on increased roles and responsibilities. Even though they do this, they don't want to be labeled as "caregivers." Families want to be involved... they want the neurologist to listen to their opinions at appointments. Whenever something happens to the person with MS, it's a team thing. The family adjusts based on what the person with MS can or cannot do.
So that's the summary. People may wonder what bothered Beth in this. There's a lot of good - there are resources to help families, support groups for families. Families are teams working together.
But what got to me about this article is there seemed to be a split. There are articles on MS. There are articles on people with MS. And there are articles on families of people with MS. What I noticed was it didn't seem that the person with MS is necessarily part of the team, or perhaps that was a sidenote (ie the person with MS should communicate their needs so the family can figure things out). Families are adjusting. These families felt they were doing more, which basically seemed to indicate the person with MS was doing less, and less, and less, as time went on. That may be true in some cases - that the person with MS is doing less. The family team didn't really seem to include the person with MS. It just seemed - is the person who wrote the article part of a family team? Did they see the gaps in this article?
Since I'm a person with MS and am part of a family where the team is everyone - immediate, extended, neighbors, friends, colleagues, church community, anyone I meet... I have thoughts. I was diagnosed with MS when I was single. My parents were in Colorado and I was in Ohio. I went to Kenyon College which served as my family at that time. As a family, we discussed how I could remain involved in running, without running on the team. So I wasn't running but I helped as assistant coach.
Fast forward many years to today. Now my husband, daughter, and I live in Colorado. I have lesions on my spine but not my brain, so MS impairs my ability to walk for the most part, and is exacerbated by heat. So, we all know I can't pack the car for vacations. It's easier for someone to retrieve my walker or wheelchair from the car than for me to do it, but I can do it. Essentially, I'm limited physically. But I'm part of the family and though my husband does the physical stuff, I do many things. I figure out my daughter's extra curricular stuff and there's a ton of it. I may not play soccer with my daughter, but we play plenty of games. And check this out - I work! Unfortunately, the people with MS featured in the article didn't work. Most people with MS do work. So we have 2 parents working full-time, and juggling everything together.
If I get hit with an MS event, which hasn't happened for over 2 years due to Ampyra, I think... well, when something did happen I suppose I would warn everyone to stay clear, I apologize in advance, and I'm going on steroids, an emotional roller coaster.
Beyond my husband, daughter, and me, there's a lot of people who are the "extended family." But I hope they don't feel separated from me, doing things not in conjunction with me. There are awesome people at work who help me when needed, and who cheer me on. At church, people help a lot and because of that, I'm a part of things. It's team-based in that we talk about things as simple as "would you like me to get you some coffee?" (Of course, always!)
I didn't like the article I read. I suppose I've now created my own article on how I think family with MS functions.
There's another thing or 2. Yes, the family is diagnosed with MS, and the family is a team, definitely. But the person with MS - that's who goes to bed with it every night, and that's who wakes up each morning not knowing if they will be able to walk that day. So, the person is diagnosed with MS. This is difficult to explain. No matter how much "team" there is, at the end of the day, it's the person's battle. I think, for me, that can be where faith plays a big part, but since that just hit me, I can't explain the faith connection either.
The last little thing is terminology. So often in these articles and when people talk, they use "dealing with" fill in the blank. Instead of "dealing with," I think we should be "living with." I am, right now, living with a jumpy right leg with a laptop on my lap. It's comical in a way - as the leg starts its spasm, the laptop hops around my lap. The jumping goes for about 6 seconds and then there's a break of about 25 seconds. I live with this a lot. I suppose I "deal with it" too, but then "deal with" seems broadened to the point where we're "dealing with" getting a cup of coffee for Beth. (you should smile here, if you know my coffee addiction!) If you read articles, keep an eye out for that terminology.
Jumpy leg and all, it's time for me to get up and walk to stop the jumpy leg.
In conclusion then, as people know others with MS, consider that MS is a family disease to an extent. It's a family disease where the family, inclusive of the person with MS, lives with MS. And at the end of each day, the person with MS goes to bed alone with the disease. And then I pray, so really, I'm never completely alone.
Peace.
Saturday, July 21, 2012
Aurora
A while back, I had thought of writing a blog entry on the city of Aurora, Colorado, and why I love it. When I moved back to Colorado from Minnesota, I moved to Aurora and have worked there ever since. I lived in an apartment in Aurora, and bought my first house there. We moved out because my husband had been there so long and wanted something different.
I suppose what I like about Aurora is the diversity it brings. Of course, this isn't everywhere and there are pockets, but it is there. We have a prayer group in the building where I work, in Aurora, and it brings people of diverse backgrounds and even religions together in prayer. For some reason, in Aurora people seem more willing to naturally offer help than in some other places.
The shooting rampage during Batman - in this city that I love even though I no longer live there, my work is not near the location and neither is my church (which is also in Aurora). I don't know any of the victims. I've been to the theater a handful of times... when we lived there. A medical office building where I go is very close, but there's no relation, really, to the theater, the victims, etc.
So, I wonder, why did I feel impacted by the shooting more than with other such "things?" I don't know. I found myself checking the news or staring into space most of the day. It will never make sense.
I think, once I broke through the staring phase today and looked again at the news, what I realized is this. Aurora is a strong community, and Colorado as a state is a strong community. We have firefighters, police officers, paramedics, physicians, nurses, counselors, and many other people who seem to pull together during times like this. We have an amazing governor who is everywhere, doing all he can. We have so many people who want to help.
It's Colorado. It's Aurora. It's many places.
Thoughts and prayers to everyone affected by the tragedy. Thanks to all those who have helped, in any way they can.
In times like this, people will say faith can help people immensely. I think that's true. It's time to be in relationship with God, to allow oneself to pause, to be still, to take a step back.
"Be still and know I am God.
Be still and know I am.
Be still and know.
Be still.
Just Be.
Be...
Be...
Be..."
Peace.
I suppose what I like about Aurora is the diversity it brings. Of course, this isn't everywhere and there are pockets, but it is there. We have a prayer group in the building where I work, in Aurora, and it brings people of diverse backgrounds and even religions together in prayer. For some reason, in Aurora people seem more willing to naturally offer help than in some other places.
The shooting rampage during Batman - in this city that I love even though I no longer live there, my work is not near the location and neither is my church (which is also in Aurora). I don't know any of the victims. I've been to the theater a handful of times... when we lived there. A medical office building where I go is very close, but there's no relation, really, to the theater, the victims, etc.
So, I wonder, why did I feel impacted by the shooting more than with other such "things?" I don't know. I found myself checking the news or staring into space most of the day. It will never make sense.
I think, once I broke through the staring phase today and looked again at the news, what I realized is this. Aurora is a strong community, and Colorado as a state is a strong community. We have firefighters, police officers, paramedics, physicians, nurses, counselors, and many other people who seem to pull together during times like this. We have an amazing governor who is everywhere, doing all he can. We have so many people who want to help.
It's Colorado. It's Aurora. It's many places.
Thoughts and prayers to everyone affected by the tragedy. Thanks to all those who have helped, in any way they can.
In times like this, people will say faith can help people immensely. I think that's true. It's time to be in relationship with God, to allow oneself to pause, to be still, to take a step back.
"Be still and know I am God.
Be still and know I am.
Be still and know.
Be still.
Just Be.
Be...
Be...
Be..."
Peace.
Wednesday, July 18, 2012
Vertical
One of the first symptoms I had with MS was bending over when I ran. I would start to bend, then more and more, and I could fall. This was videotaped for doctors who all (except one, and he wasn't a neurologist) said this couldn't indicate MS. But it did.
Now, over 20 years later, so many things have improved with Ampyra and the Bioness. But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.
I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring. There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical. A big driver are the muscles in the lower stomach and gluteal.
Who knew? If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend. When I stand, to get more vertical, I squeeze those muscles. It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up. Then, to further strengthen quads, I shift from right to left a few times before walking.
It's incredible, I think - all this work to try to get more vertical. It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside. All this work when others just do this simple action without thinking.
I spend some time watching how other people walk - how they get up - which muscles they use. It just doesn't seem to take that much to stand and walk. But then, when something happens, there's the realization that it takes an incredible amount to stand and walk. And I am lucky to have the opportunity to see how much it takes.
In a sense, having this opportunity is great. In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all. I will sit and think about how people don't realize how much is involved - they get up and go. When I walk people may make comments like "are you ok?" So I realize there is a long road to go.
So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved.
It's a matter of gaining strength. It's a matter of getting connections to possibly work again. And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals. And that is where Ampyra helps - to connect those signals.
For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them. It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take. But for some of us, we are willing to attempt those fixes. It's not easy and often, not fun. The results may be fantastic.
And since this blog does involve the element of faith, it's taken faith as well. There are times of happiness, times of frustration, times of being tired, and so on. There are songs my daughter learned at camp and now I know them. They are calming. In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos. But I can find that time, find quiet moments, to sing those songs. One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace.
Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is
Peace.
Now, over 20 years later, so many things have improved with Ampyra and the Bioness. But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.
I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring. There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical. A big driver are the muscles in the lower stomach and gluteal.
Who knew? If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend. When I stand, to get more vertical, I squeeze those muscles. It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up. Then, to further strengthen quads, I shift from right to left a few times before walking.
It's incredible, I think - all this work to try to get more vertical. It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside. All this work when others just do this simple action without thinking.
I spend some time watching how other people walk - how they get up - which muscles they use. It just doesn't seem to take that much to stand and walk. But then, when something happens, there's the realization that it takes an incredible amount to stand and walk. And I am lucky to have the opportunity to see how much it takes.
In a sense, having this opportunity is great. In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all. I will sit and think about how people don't realize how much is involved - they get up and go. When I walk people may make comments like "are you ok?" So I realize there is a long road to go.
So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved.
It's a matter of gaining strength. It's a matter of getting connections to possibly work again. And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals. And that is where Ampyra helps - to connect those signals.
For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them. It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take. But for some of us, we are willing to attempt those fixes. It's not easy and often, not fun. The results may be fantastic.
And since this blog does involve the element of faith, it's taken faith as well. There are times of happiness, times of frustration, times of being tired, and so on. There are songs my daughter learned at camp and now I know them. They are calming. In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos. But I can find that time, find quiet moments, to sing those songs. One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace.
Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is
Peace.
Tuesday, July 3, 2012
On Fire
June was quite the month! It was the hottest ever in Colorado. "We" tied the hottest temp ever here, and "we" did it twice. "We also tied the highest consecutive number of days at or above 100. There seem too many fires to count in this state right now. One hit Colorado Springs, a city, and destroyed over 300 homes. East of here, outside of Colorado, there were storms that knocked out electricity, and that is not a good thing for the middle of the summer. Right before the heat, we had storms with hail, so in the current 100 degree heat, people are having roofs repaired.
Recently I heard a story on people with asthma and allergies and how much it affects them. Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground. Not everyone - I suppose I'm affected to the extreme. My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.
I'm grateful. I have my home. A friend of mine who has MS was evacuated because of one of the fires. Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult. She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home. I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok..... I can't imagine. MS causes havoc.
I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail. Miraculously, they are coming back.
So although I am grateful for what I have, it has been a miserable month. I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van."). I stay inside as much as I can. But it's miserable. Since for the most part I can't go outside, my walking is more limited. And as people who know me know, I don't really like to be asking for all this help.
Many people ask what happens during heat? I have now determined that for me, it depends. A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear. The core body temperature for people with MS goes up much more than for people without. This may be because many with MS don't sweat. I never sweat - this is actually a problem. Because of this, in the study, the people with MS couldn't walk and they had a hard time standing. The results were dramatic. For me, it's much the same. By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.
The other thing that can happen is hands and feet get tingly, or go numb. I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area. When I got up - well read the previous paragraph. It was hard to get up. It was hard to walk. And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.
The only good part is it doesn't last long. In an hour, function somewhat returns. In 24 hours, generally people are fine. I'm going to bed feeling like spaghetti legs, and waking up fine. I like waking up fine. But the every day cycle is old.
We have 2 more months in summer. I'm hoping for an early fall. So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.
We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life. It's always one day, one hour, one minute at a time with MS. But when the heat breaks, it's all more tolerable.
And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.
Peace.
Recently I heard a story on people with asthma and allergies and how much it affects them. Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground. Not everyone - I suppose I'm affected to the extreme. My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.
I'm grateful. I have my home. A friend of mine who has MS was evacuated because of one of the fires. Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult. She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home. I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok..... I can't imagine. MS causes havoc.
I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail. Miraculously, they are coming back.
So although I am grateful for what I have, it has been a miserable month. I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van."). I stay inside as much as I can. But it's miserable. Since for the most part I can't go outside, my walking is more limited. And as people who know me know, I don't really like to be asking for all this help.
Many people ask what happens during heat? I have now determined that for me, it depends. A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear. The core body temperature for people with MS goes up much more than for people without. This may be because many with MS don't sweat. I never sweat - this is actually a problem. Because of this, in the study, the people with MS couldn't walk and they had a hard time standing. The results were dramatic. For me, it's much the same. By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.
The other thing that can happen is hands and feet get tingly, or go numb. I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area. When I got up - well read the previous paragraph. It was hard to get up. It was hard to walk. And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.
The only good part is it doesn't last long. In an hour, function somewhat returns. In 24 hours, generally people are fine. I'm going to bed feeling like spaghetti legs, and waking up fine. I like waking up fine. But the every day cycle is old.
We have 2 more months in summer. I'm hoping for an early fall. So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.
We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life. It's always one day, one hour, one minute at a time with MS. But when the heat breaks, it's all more tolerable.
And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.
Peace.
Friday, June 22, 2012
A good ending
This past week I got my first pair of "real" running shoes in years. It's not that I'm ready to run in them, but, well it's complicated...
Instead of braces on my legs (called AFOs - sounds like an alien invention!), I now have what's called a Bioness on each. The Bioness has 2 parts. There's an upper "cuff" that goes right below the knee, and there's a heel sensor that goes between the insole and shoe (where the heel strikes when walking). When I push on my heel, that activates the heel sensor. Somehow that then talks to the cuff, which has 2 electrodes (don't quote me on terminology here!). The cuff is placed in just the right place so the electrodes "zap," or send a signal, to some part of the outer calf. That part is actually the part that sends a message to the foot, or actually toes, to lift up and then kick forward. It's really cool because I can plant my heel and then really kick my whole foot and leg out. Anyway, back to shoes.
Because I have heel sensors rather than huge braces for shoes, I can wear more than just the big clunky shoes. I'm still limited, but I don't have to worry about shoving a brace into my shoe. I have to make sure there is heel stability. I broke out a pair of sturdy sandals and have been wearing them, but they are not good for when I really want to walk further. And I am sick of the big, clunky black shoes I wear everywhere.
So I went to the running store. The guy there was really nice and didn't ask why in the world the lady with the walker wanted running shoes with solid ankle support. He showed me a pair and remarked they are good for pronation (that's when the foot turns in naturally). I have the opposite problem - my feet tend to turn out so my ankle bends out. I think I've always tended this way. In high school some people came to analyze our running technique and said I had a very strange knee alignment and something strange with my foot. My physical therapist says my foot tends to stick out to the side instead of straight. I have flat feet too! Maybe these things made me fast, yes?
I found a pair of shoes. My mom and I went home and that night I set them up with the heel sensors, ready to go for an early morning walk. The heat has been getting to me lately, so I didn't know how the walk would go.
The next morning everything was set. I got out of the van, got the walker, and started. And then I stopped. What?!! Don't heel sensors work with running shoes? I could feel a zing being sent to my right leg, but it wasn't responding at all. Nor was the left. So, discouraged, I went home in a pout. I put the heel sensors back in my other shoes. The same thing happened. I "made up" that it was the heat, that nothing was going to work that day.
That night we went to Starbucks with the old shoes. Same thing. Impulses clearly being sent but nothing was happening. Pout.
When we got home I did a bunch of exercises to see how bad this MS and heat was getting to me. But the exercises went fine. Terrific. I "made up" the Bioness was broken and I would have to wear clunky shoes and AFOs made by aliens (see paragraph near beginning) for life. Pout.
This morning I got up and figured I would call the physical therapist. We have a prayer group in the building where I work. So I went to that and yes, we did actually pray that these things start working again!
Back at my desk, I made an appointment and talked with someone who told me to check the heel sensors. And so I took the right heel sensor out. I squeezed on it. And it activated the left cuff. So, if you haven't figured it out, the right heel sensor was trying to get the left leg to move while the left heel sensor was trying to get the right leg to move! Thus, there were a bunch of signals all mixed up.
That just goes to show that when doing something as easy as moving heel sensors between shoes, it's important that they go in the correct side.
I guess those prayers worked. No, there was a scream to switch the sensors that wasn't being heard - to think more than one way. Perhaps there was a scream to stop doubting ability and instead figure out why. A plea to move forward and believe in myself without doing a bunch of exercises to convince myself I'm ok.
And in the end, though frustrating, I have to laugh. Zing, zing, zing. Now to switch the sensors to the running shoes... the correct way.
Peace.
Instead of braces on my legs (called AFOs - sounds like an alien invention!), I now have what's called a Bioness on each. The Bioness has 2 parts. There's an upper "cuff" that goes right below the knee, and there's a heel sensor that goes between the insole and shoe (where the heel strikes when walking). When I push on my heel, that activates the heel sensor. Somehow that then talks to the cuff, which has 2 electrodes (don't quote me on terminology here!). The cuff is placed in just the right place so the electrodes "zap," or send a signal, to some part of the outer calf. That part is actually the part that sends a message to the foot, or actually toes, to lift up and then kick forward. It's really cool because I can plant my heel and then really kick my whole foot and leg out. Anyway, back to shoes.
Because I have heel sensors rather than huge braces for shoes, I can wear more than just the big clunky shoes. I'm still limited, but I don't have to worry about shoving a brace into my shoe. I have to make sure there is heel stability. I broke out a pair of sturdy sandals and have been wearing them, but they are not good for when I really want to walk further. And I am sick of the big, clunky black shoes I wear everywhere.
So I went to the running store. The guy there was really nice and didn't ask why in the world the lady with the walker wanted running shoes with solid ankle support. He showed me a pair and remarked they are good for pronation (that's when the foot turns in naturally). I have the opposite problem - my feet tend to turn out so my ankle bends out. I think I've always tended this way. In high school some people came to analyze our running technique and said I had a very strange knee alignment and something strange with my foot. My physical therapist says my foot tends to stick out to the side instead of straight. I have flat feet too! Maybe these things made me fast, yes?
I found a pair of shoes. My mom and I went home and that night I set them up with the heel sensors, ready to go for an early morning walk. The heat has been getting to me lately, so I didn't know how the walk would go.
The next morning everything was set. I got out of the van, got the walker, and started. And then I stopped. What?!! Don't heel sensors work with running shoes? I could feel a zing being sent to my right leg, but it wasn't responding at all. Nor was the left. So, discouraged, I went home in a pout. I put the heel sensors back in my other shoes. The same thing happened. I "made up" that it was the heat, that nothing was going to work that day.
That night we went to Starbucks with the old shoes. Same thing. Impulses clearly being sent but nothing was happening. Pout.
When we got home I did a bunch of exercises to see how bad this MS and heat was getting to me. But the exercises went fine. Terrific. I "made up" the Bioness was broken and I would have to wear clunky shoes and AFOs made by aliens (see paragraph near beginning) for life. Pout.
This morning I got up and figured I would call the physical therapist. We have a prayer group in the building where I work. So I went to that and yes, we did actually pray that these things start working again!
Back at my desk, I made an appointment and talked with someone who told me to check the heel sensors. And so I took the right heel sensor out. I squeezed on it. And it activated the left cuff. So, if you haven't figured it out, the right heel sensor was trying to get the left leg to move while the left heel sensor was trying to get the right leg to move! Thus, there were a bunch of signals all mixed up.
That just goes to show that when doing something as easy as moving heel sensors between shoes, it's important that they go in the correct side.
I guess those prayers worked. No, there was a scream to switch the sensors that wasn't being heard - to think more than one way. Perhaps there was a scream to stop doubting ability and instead figure out why. A plea to move forward and believe in myself without doing a bunch of exercises to convince myself I'm ok.
And in the end, though frustrating, I have to laugh. Zing, zing, zing. Now to switch the sensors to the running shoes... the correct way.
Peace.
Friday, June 15, 2012
And now I know...
We live on a cul de sac, about halfway around it. Get to the end of the cul de sac, look left, and there's a bridge over a stream.
I love streams like this - the water flowing, just as life flows...
I used to wonder, what is it like for people to walk to the stream, see the water, and feel a breeze...
Today I went on my walk and found myself so close to that bridge and river. And then I was there. Blocking back tears which wanted to come, I looked at this stream. It continues; there are rocks, branches, various things blocking the path of the water. But the water finds a way, just as in life, we may search and find our way.
My husband returned home allowing me to continue to the top of the hill after the bridge.
A breeze on my face, tears blocked, looking up.
It's the little things that count.
Peace.
I love streams like this - the water flowing, just as life flows...
I used to wonder, what is it like for people to walk to the stream, see the water, and feel a breeze...
Today I went on my walk and found myself so close to that bridge and river. And then I was there. Blocking back tears which wanted to come, I looked at this stream. It continues; there are rocks, branches, various things blocking the path of the water. But the water finds a way, just as in life, we may search and find our way.
My husband returned home allowing me to continue to the top of the hill after the bridge.
A breeze on my face, tears blocked, looking up.
It's the little things that count.
Peace.
Sunday, June 10, 2012
Two
Two.
My lucky number (from a piano competition as a kid).
Two.
Today, two years since I had an MS attack.
Two years since I woke up, could hardly walk, was beyond tired, and called my doc to request steroids.
Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.
Two years of improvement with walking, sitting, standing, and much more.
Two years I thought would never happen.
Two years when other things were too much.
Two years when those other things, that were too much, did not lead to an MS attack.
Two years of exploring what is next.
Two years of change.
Two years of being glad I hadn't given up.
Two years with God beside me as I traveled down a different road.
Two.
Peace.
My lucky number (from a piano competition as a kid).
Two.
Today, two years since I had an MS attack.
Two years since I woke up, could hardly walk, was beyond tired, and called my doc to request steroids.
Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.
Two years of improvement with walking, sitting, standing, and much more.
Two years I thought would never happen.
Two years when other things were too much.
Two years when those other things, that were too much, did not lead to an MS attack.
Two years of exploring what is next.
Two years of change.
Two years of being glad I hadn't given up.
Two years with God beside me as I traveled down a different road.
Two.
Peace.
Tuesday, June 5, 2012
The Hunger Games
I just finished reading The Hunger Games. I know there are politics behind it - I almost made it through the book without doing an Internet search to see what others thought. There are some interesting opinions out there and they do make sense. The book is excellent, and I have to wonder if different people find different meanings within it, for themselves.
I've had a bit of writer's block lately - one moment I think I want to write on one aspect of life; another moment something in life changes and I want to write about that. Then later, neither idea makes sense, or perhaps it would tell too much about things, or perhaps it's just a writer's block and I'm stumped.
But getting back to The Hunger Games where there are kids killing kids... I'm not concentrating on that but on another aspect - perhaps it's in the style of writing... Katniss, the main character, has a great ability to be constantly thinking - if she didn't, she'd be killed. And she has to constantly be shifting her thinking as things change.
This reminds me of my life in a strange way, and is probably true for many with disabilities. While I'm not avoiding someone killing me, I'm constantly reasoning through things, and shifting things, to make things "work" for me. Sometimes, I'm trying to avoid falling. Sometimes I'm trying to find the best way. Sometimes I'm experimenting.
So, a few examples...
Every morning I get up and have a routine to get to the shower, out of the shower, etc. But I don't think most people have a big thought process to go with their morning routine. As I sit on my bed, I'm hoping that when I launch myself, my leg muscles engage so they push me up. If they don't, quickly I have to shift to using my arms. And if I am using my arms, I sit back down and try again. Another thought process occurs right after the shower. I make my way across the floor, and I'm being careful. But if there's water on the floor, I have to re-adjust, knowing that if I slip, I won't recover from it like everyone else. So I plan for that slip, knowing there are several routes to get where I need to go. If I do slip, then rather than a big fall, I should be able to let myself down slowly, and not get hurt.
In the summer it gets hot. When I leave work and it's hot, I have a plan. I pretend I have 2 minutes to get out, get my wheelchair or walker in the car, and get in the car. If I stop to talk, in the sun, I'm going to struggle more. If I take my time disassembling my wheelchair, then to get to the front, I'm out of energy. So I'm thinking at each step of disassembling my chair. Sometimes things still don't go as planned, and I wonder how I will make it to my car.
When I go on some of my walks when I am working at walking, I think several things, and I shift depending on what is happening with my walk. If I am dragging my left leg more than I want, then I use visualization... so I have the Bioness getting the right foot to do what it is supposed to do and I think through mimicking that with my left leg. If my right leg is acting a bit "off," I have to shift thinking. Then I'm making sure my heel is hitting the ground first. That activates the Bioness (there's a heel sensor). So I have to think "heel" with each step. When both legs are "behaving," then I'm working on a longer kick. Or the new thing is I crank my neck back and strain it, and so I try to have it look straight ahead. I may be working on speed, so with each step, I am doing a count to have consistency with each step. I may work on standing straihter. And then sometimes, I throw out the thought process and go as fast as I can and time myself - that is fun.
So while reading The Hunger Games, first I was just drawn into the whole plot. Then there are politics behind things. And then there was me, thinking of the thought processes Katniss had, of her ability to adapt to so many situations, and of the many thought processes that are a part of each day for me, especially if I want to walk.
And I do, I want to walk. A neurologist who is well-known meets with various groups and tells them that the people with MS who walk into his office - the most important thing for them is that they want to walk.
And who knows where I go from here... but I have so many thoughts...
Peace.
I've had a bit of writer's block lately - one moment I think I want to write on one aspect of life; another moment something in life changes and I want to write about that. Then later, neither idea makes sense, or perhaps it would tell too much about things, or perhaps it's just a writer's block and I'm stumped.
But getting back to The Hunger Games where there are kids killing kids... I'm not concentrating on that but on another aspect - perhaps it's in the style of writing... Katniss, the main character, has a great ability to be constantly thinking - if she didn't, she'd be killed. And she has to constantly be shifting her thinking as things change.
This reminds me of my life in a strange way, and is probably true for many with disabilities. While I'm not avoiding someone killing me, I'm constantly reasoning through things, and shifting things, to make things "work" for me. Sometimes, I'm trying to avoid falling. Sometimes I'm trying to find the best way. Sometimes I'm experimenting.
So, a few examples...
Every morning I get up and have a routine to get to the shower, out of the shower, etc. But I don't think most people have a big thought process to go with their morning routine. As I sit on my bed, I'm hoping that when I launch myself, my leg muscles engage so they push me up. If they don't, quickly I have to shift to using my arms. And if I am using my arms, I sit back down and try again. Another thought process occurs right after the shower. I make my way across the floor, and I'm being careful. But if there's water on the floor, I have to re-adjust, knowing that if I slip, I won't recover from it like everyone else. So I plan for that slip, knowing there are several routes to get where I need to go. If I do slip, then rather than a big fall, I should be able to let myself down slowly, and not get hurt.
In the summer it gets hot. When I leave work and it's hot, I have a plan. I pretend I have 2 minutes to get out, get my wheelchair or walker in the car, and get in the car. If I stop to talk, in the sun, I'm going to struggle more. If I take my time disassembling my wheelchair, then to get to the front, I'm out of energy. So I'm thinking at each step of disassembling my chair. Sometimes things still don't go as planned, and I wonder how I will make it to my car.
When I go on some of my walks when I am working at walking, I think several things, and I shift depending on what is happening with my walk. If I am dragging my left leg more than I want, then I use visualization... so I have the Bioness getting the right foot to do what it is supposed to do and I think through mimicking that with my left leg. If my right leg is acting a bit "off," I have to shift thinking. Then I'm making sure my heel is hitting the ground first. That activates the Bioness (there's a heel sensor). So I have to think "heel" with each step. When both legs are "behaving," then I'm working on a longer kick. Or the new thing is I crank my neck back and strain it, and so I try to have it look straight ahead. I may be working on speed, so with each step, I am doing a count to have consistency with each step. I may work on standing straihter. And then sometimes, I throw out the thought process and go as fast as I can and time myself - that is fun.
So while reading The Hunger Games, first I was just drawn into the whole plot. Then there are politics behind things. And then there was me, thinking of the thought processes Katniss had, of her ability to adapt to so many situations, and of the many thought processes that are a part of each day for me, especially if I want to walk.
And I do, I want to walk. A neurologist who is well-known meets with various groups and tells them that the people with MS who walk into his office - the most important thing for them is that they want to walk.
And who knows where I go from here... but I have so many thoughts...
Peace.
Saturday, May 26, 2012
Journeys and speeches
Last week, I spoke to the "big WIGS" at our organization. Just 3 minutes about our People with Disabilities Business Resource Group. Other groups gave 3 minute talks as well - African American, Latino, Pride (LGBT...), Veterans... While I thought my 3 minutes (in which we were told we could only be positive) was succesful, I thought the bigger part of the evening, might have been the journey to get there.
I met with 2 people to figure out how I would get there because getting anywhere new is always a new adventure. "It's easy - you just cross the street from the parking garage and it's right there. Then the elevator is right at the entrance, you go up, and the reception is right there." Uh huh. Right. Show me. This is the Denver Art Museum and it's downtown, and downtown is never easy for me. In reality, it was just a block and a half, then cross the street........ and for someone like me, the difference between crossing the street and adding a block and a half is a big deal if I'm going to use my walker, which I was.
"Well, there's a drop off spot right by the entrance. Stop there, call me, and I'll come park your car." Right. So I drove there. The museum is actually in a large area. There's not really a drop off spot. Well, there is, but the curb cut isn't there. The curb cut is down the street a bit. I parked there and should have brought my camera to take pictures of the looks I got. Someone came out - not the right person - the person who was pregnant with a bad back. Right. On the 2nd try, 2 people who were not pregnant and did not have a bad back helped. Excellent. Someone parked my car and I walked in.
Even from there it was a pretty far way to get inside. But I made it, just in time for the speeches to begin.
I heard... we are awesome. 43% of our workforce is of color and 75% of our workforce is women. Our founder said it was ok for a person of color to share a hospital room with a white person, and this was way before that was considered ok. (Our founder's son had MS - that was not said). On and on and on and on ... everything but disability, pride, and veterans. Then we each got to talk. Here's my abbreviated talk, which I modified a bit after hearing percentages of other races.
"The rate of disability in the US is about 20%. Unfortunately that will probably go up because baby boomers are aging and we have the obesity epidemic, and obesity lends itself to disability.
Our resource group has 3 Co-Chairs (introduced them). Our group is small, but our members have a lot of passion behind them. I would like to highlight 3 things we do.
First, we have our "Spice of Life" dinner which we have had each October for 3 years. It started as a pilot but grew quickly. Last year we had to limit the number of people from each organization who come. We have people from organizations who work with people with disabilities, people with disabilities, employees who work with people with disabilities, and members of our resource group. We are told no one else does this. It's a place for people to form linkages, the only place people really see each other face to face. Since we're told no one else does this, we're pretty sure our competition doesn't do this. And the businesses who are there - many are our employer groups, so this is good visibility.
The second thing we have is our "Thrive" accessible activity which we have had for 4 years. We know we emphasize health and wellness. We know we emphasize walking. So we make sure we have an accessible activity that shows we model health and wellness for people with disabilities as well. We've done an accessible ropes course in the mountains, an accessible hike in the mountains, and this past year we met at Garden of the Gods. This showcasea our inclusion to the community.
Lastly, we are a voice at the table for our membership ADA outreach committee. We identify gaps in the system. We know we have wheelchair scales - do we use them? We know we have lower exam tables. Are people with disabilities put in rooms with these? We get calls from members and can have those concerns addressed.
Thank you for your time and we hope our events will continue. We hope you will be especially aware of our dinner."
Whew. Done. Soon it was time to go. Getting out was much easier since we knew where my car was parked. The journey was almost complete.
I pulled away from the museum and noticed the homeless parked on the lawn by the capital for the night. They each have their own journey.
The next day I heard of the great, beautiful location with the great view and we should not forget about this for other times.
I won't forget. It was quite a journey. Most things I do are, and people see pieces of those journeys but not the whole thing.
I hope people with disabilities don't continue to be invisible in the world of diversity. There is so much work to do. Our group is so small because people don't disclose disability for fear of losing their job. Even if they have a known disability, they hold back discussing it for the same fear. A fear is being one of the ones camped out in the park, as so many people who have disabilities are homeless. But that is another topic, for another post.
Peace.
I met with 2 people to figure out how I would get there because getting anywhere new is always a new adventure. "It's easy - you just cross the street from the parking garage and it's right there. Then the elevator is right at the entrance, you go up, and the reception is right there." Uh huh. Right. Show me. This is the Denver Art Museum and it's downtown, and downtown is never easy for me. In reality, it was just a block and a half, then cross the street........ and for someone like me, the difference between crossing the street and adding a block and a half is a big deal if I'm going to use my walker, which I was.
"Well, there's a drop off spot right by the entrance. Stop there, call me, and I'll come park your car." Right. So I drove there. The museum is actually in a large area. There's not really a drop off spot. Well, there is, but the curb cut isn't there. The curb cut is down the street a bit. I parked there and should have brought my camera to take pictures of the looks I got. Someone came out - not the right person - the person who was pregnant with a bad back. Right. On the 2nd try, 2 people who were not pregnant and did not have a bad back helped. Excellent. Someone parked my car and I walked in.
Even from there it was a pretty far way to get inside. But I made it, just in time for the speeches to begin.
I heard... we are awesome. 43% of our workforce is of color and 75% of our workforce is women. Our founder said it was ok for a person of color to share a hospital room with a white person, and this was way before that was considered ok. (Our founder's son had MS - that was not said). On and on and on and on ... everything but disability, pride, and veterans. Then we each got to talk. Here's my abbreviated talk, which I modified a bit after hearing percentages of other races.
"The rate of disability in the US is about 20%. Unfortunately that will probably go up because baby boomers are aging and we have the obesity epidemic, and obesity lends itself to disability.
Our resource group has 3 Co-Chairs (introduced them). Our group is small, but our members have a lot of passion behind them. I would like to highlight 3 things we do.
First, we have our "Spice of Life" dinner which we have had each October for 3 years. It started as a pilot but grew quickly. Last year we had to limit the number of people from each organization who come. We have people from organizations who work with people with disabilities, people with disabilities, employees who work with people with disabilities, and members of our resource group. We are told no one else does this. It's a place for people to form linkages, the only place people really see each other face to face. Since we're told no one else does this, we're pretty sure our competition doesn't do this. And the businesses who are there - many are our employer groups, so this is good visibility.
The second thing we have is our "Thrive" accessible activity which we have had for 4 years. We know we emphasize health and wellness. We know we emphasize walking. So we make sure we have an accessible activity that shows we model health and wellness for people with disabilities as well. We've done an accessible ropes course in the mountains, an accessible hike in the mountains, and this past year we met at Garden of the Gods. This showcasea our inclusion to the community.
Lastly, we are a voice at the table for our membership ADA outreach committee. We identify gaps in the system. We know we have wheelchair scales - do we use them? We know we have lower exam tables. Are people with disabilities put in rooms with these? We get calls from members and can have those concerns addressed.
Thank you for your time and we hope our events will continue. We hope you will be especially aware of our dinner."
Whew. Done. Soon it was time to go. Getting out was much easier since we knew where my car was parked. The journey was almost complete.
I pulled away from the museum and noticed the homeless parked on the lawn by the capital for the night. They each have their own journey.
The next day I heard of the great, beautiful location with the great view and we should not forget about this for other times.
I won't forget. It was quite a journey. Most things I do are, and people see pieces of those journeys but not the whole thing.
I hope people with disabilities don't continue to be invisible in the world of diversity. There is so much work to do. Our group is so small because people don't disclose disability for fear of losing their job. Even if they have a known disability, they hold back discussing it for the same fear. A fear is being one of the ones camped out in the park, as so many people who have disabilities are homeless. But that is another topic, for another post.
Peace.
Saturday, May 19, 2012
Thanks
Thank you - 2 simple words. But each donation to the MS Society for the MS Walk means so much. It all added into over $4,000, which is my highest total ever. "Thank you" doesn't seem enough.
For all the donations raised by myself and others over the years, so much has occurred. There were the "ABC" drugs as the first drugs to slow the progression of MS. After those came new drugs, targeting different things, carrying bigger risks, but being more effective at slowing MS than the "ABC" drugs. Recently Ampyra entered the scene as the "walking drug," and the only drug that has really worked for me.
Alongside these drugs have been advancements in technology. Leg braces, called AFOs, have changed over the years. And most recently, there is the Bioness, a robotic type of device triggering nerves and muscles in the legs.
The MS Society also provides programs, services, and grants for people with MS. They helped me get grants for a Bioness. They address employment.
There is much to do. There won't be real satisfaction until there is a cure and/or a vaccine. At the walk, I saw a friend, diagnosed way after me, who is a quadriplegic. We drastically need medicines to cure MS at its onset. One never knows what direction MS will take. We need a vaccine so no one has to hear the words "you have MS."
And there needs to be education to aid those living with MS now. People need to know the effects of heat. They need to do more than just stating they understand. Read. Listen. People need to know that for some, 1 minute of heat, sun, and humidity may make a person with MS temporarily into spaghetti. And people need to know that the symptoms that come and go are not fake and are not used to make excuses. They are real. 1 minute with MS a person is fine; the next minute the person is wondering what train hit them and what to do about it. 1 minute I am fine and sit down; when I stand to get up, things may change - adaptation at every moment of every day. That is not understood by everyone - some people "get it," some people don't and never will, and some people say they "get it," but don't and never will.
But thanks to so many, we are getting there. New research, help for those living with MS, and education. "Step" by "step."
And for me, God there along every "step" of this "adventure," where I am fortunate and cannot fully express my gratitude to friends and family who support me, who "get it," on a minute by minute, day by day, year by year, lifetime basis. Thank you.
(And the thank you photo cards are printed and on the way :) )
Peace.
For all the donations raised by myself and others over the years, so much has occurred. There were the "ABC" drugs as the first drugs to slow the progression of MS. After those came new drugs, targeting different things, carrying bigger risks, but being more effective at slowing MS than the "ABC" drugs. Recently Ampyra entered the scene as the "walking drug," and the only drug that has really worked for me.
Alongside these drugs have been advancements in technology. Leg braces, called AFOs, have changed over the years. And most recently, there is the Bioness, a robotic type of device triggering nerves and muscles in the legs.
The MS Society also provides programs, services, and grants for people with MS. They helped me get grants for a Bioness. They address employment.
There is much to do. There won't be real satisfaction until there is a cure and/or a vaccine. At the walk, I saw a friend, diagnosed way after me, who is a quadriplegic. We drastically need medicines to cure MS at its onset. One never knows what direction MS will take. We need a vaccine so no one has to hear the words "you have MS."
And there needs to be education to aid those living with MS now. People need to know the effects of heat. They need to do more than just stating they understand. Read. Listen. People need to know that for some, 1 minute of heat, sun, and humidity may make a person with MS temporarily into spaghetti. And people need to know that the symptoms that come and go are not fake and are not used to make excuses. They are real. 1 minute with MS a person is fine; the next minute the person is wondering what train hit them and what to do about it. 1 minute I am fine and sit down; when I stand to get up, things may change - adaptation at every moment of every day. That is not understood by everyone - some people "get it," some people don't and never will, and some people say they "get it," but don't and never will.
But thanks to so many, we are getting there. New research, help for those living with MS, and education. "Step" by "step."
And for me, God there along every "step" of this "adventure," where I am fortunate and cannot fully express my gratitude to friends and family who support me, who "get it," on a minute by minute, day by day, year by year, lifetime basis. Thank you.
(And the thank you photo cards are printed and on the way :) )
Peace.
Monday, April 30, 2012
Cool breezes
Many years ago, on family road trips, packed in our station wagon, all 5 of us would travel for hours without stopping. We'd stop at a hotel each night, go get dinner, and then head back to the room. Then my mom and I would leave to go walk for a bit, in the middle of a strip of hotels. It was a time to get away from being squeezed into a car or hotel room. Generally a breeze accompanied us.
Years later, my mom and I would walk each night during the summer on a 3 mile or so hike around a loop. We'd walk to a bike path, stop at the frozen yogurt store, and continue walking while eating our yogurt, on a bike trail that went through fields and a park. Then we'd branch off and take the shortcut home. This was during college - special times, getting away from it all, and often, thinking back, the nightly cool breeze came with us.
At Christmas time, my mom and I would walk another loop through 2 neighborhoods to look at the lights. I remember one year, her saying, "maybe we should just wait until next year" since it was cold. And I recall saying "no, I don't know if I'll be able to walk this far next year." And so we walked, looking at beautiful lights, accompanied by a cold breeze while in the still of the night. That was the last time we did that loop due to weather and then it becoming too far for me.
The last big hike with my mom and younger brother occurred during college. I announced we would hike to Flatop Mountain, from Bear Lake, near Estes Park, and I announced we would leave very early, even though my mom and brother declare they are not morning people. We made our way up, at various times stopping, with 2 people wanting to turn back and one person saying we should go a bit further. In this way, we made it to the top, accompanied by a breeze and slight rain. That was the last time we did a long hike from there.
Now I'm told to walk nightly. No one is with me, the walks aren't far, and they can be in strange places like parking lots. But as I was walking the other night, I felt a cool breeze that brought me back to the other times I walked. It's a somewhat magical cool breeze. I feel something special, bringing me back to the other times. And though it's not like the other times, I am walking at night and feeling a cool breeze that remains after all these years.
Is it you, God?
Peace.
Years later, my mom and I would walk each night during the summer on a 3 mile or so hike around a loop. We'd walk to a bike path, stop at the frozen yogurt store, and continue walking while eating our yogurt, on a bike trail that went through fields and a park. Then we'd branch off and take the shortcut home. This was during college - special times, getting away from it all, and often, thinking back, the nightly cool breeze came with us.
At Christmas time, my mom and I would walk another loop through 2 neighborhoods to look at the lights. I remember one year, her saying, "maybe we should just wait until next year" since it was cold. And I recall saying "no, I don't know if I'll be able to walk this far next year." And so we walked, looking at beautiful lights, accompanied by a cold breeze while in the still of the night. That was the last time we did that loop due to weather and then it becoming too far for me.
The last big hike with my mom and younger brother occurred during college. I announced we would hike to Flatop Mountain, from Bear Lake, near Estes Park, and I announced we would leave very early, even though my mom and brother declare they are not morning people. We made our way up, at various times stopping, with 2 people wanting to turn back and one person saying we should go a bit further. In this way, we made it to the top, accompanied by a breeze and slight rain. That was the last time we did a long hike from there.
Now I'm told to walk nightly. No one is with me, the walks aren't far, and they can be in strange places like parking lots. But as I was walking the other night, I felt a cool breeze that brought me back to the other times I walked. It's a somewhat magical cool breeze. I feel something special, bringing me back to the other times. And though it's not like the other times, I am walking at night and feeling a cool breeze that remains after all these years.
Is it you, God?
Peace.
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