This past weekend was the weekend of what has become a yearly visit of James Hersch to our church. James plays a guitar and sings, mostly to his own songs. I don't know how his voice remains so strong over so many years - but it's a great, high tenor voice that sings various stories. These are his stories, but they are written so they can be applied to the lives of others, and every year, a few of them apply to my life, and in a way they feel like they are also my stories. I suppose we can share them.
It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times. I don't think I can imagine life without a bunch of change. Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company. Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare. It's not advocacy for anything either, and that's also exciting. I can look at things as they are, very objectively.
As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes. It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there. And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her. And so I see a bit of anger, a bit elevated.
So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit. What to do with this?
Church is where my daughter feels safe. I can sense that. She has a favorite song that James performs every year because she loves it. He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him. After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying. It's the feeling forgotten thing. I told her we would wait, there was no hurry. But I could tell this was another reminder, in her mind, of perhaps being forgotten. In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile. She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.
In my world, with changing jobs, there has strangely not been uncertainty. I'm ready, it's time, and I'm following my heart, even if that sounds cheesy. There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James. I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives... someday we're gonna change... and what matters most, is what your heart loves best." James sang that song, and I really feel it. Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years. But the hesitancy has gone with this job. I had 5 interviews - a lot! Each interview made my desire for this job be even stronger. I better be right! But I think I am right.
By Sunday we had heard many songs. On Sunday morning my daughter sang with James and I think she may be making a turn. By Sunday, she was getting excited about an upcoming dance performance. After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses. When I dropped her off at dance tonight, she was excited. Hopefully the feelings of value she gained over the weekend will continue. She really loves dance.
I think my husband may be the only not having huge change! When it comes down to what is important, it's "what your heart loves best." And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.
God has found us in the midst of all of this. Often I have questioned, God, if something is really out there for me, where is it? God, this new hurdle with my daughter... why? She is a child.
Not everyone gets their prayers answered, even with God in the midst of it all.
But this time, prayers were answered, amidst all the change.
Peace.
Tuesday, January 29, 2013
Tuesday, January 1, 2013
Heel to toe
On 60 Minutes this week, there was a story about chips implanted in a person's brain that enabled the person to move a prosthetic arm and hand by having them simply think about moving it with their mind. I thought how similar that is to what I have experienced with Ampyra - getting function back, but having to think through movement rather than movement happening automatically. And as we enter 2013, I have to wonder, what may be next?
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
Wednesday, December 26, 2012
This I believe.
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.
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.
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.
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