It's the time of year that we spend (spent) with our families - we meaning not me, but people in general. Some families have "interesting" dynamics which might make spending time with them something that is really fun... or not. We, as Christians, or other religions, are also children of God and part of the family of God (there is better wording for this, but hopefully anyone who reads this gets the idea). Thinking of both of these concepts of family (family as people related to us / extensions of that, and the family of God), I was thinking recently of my godparents, 4 of them, some still on earth, others who have moved beyond life on earth.
Many times I think babies are baptized, people are named as godparents, and life goes on. I think I thought that until recently. Godparents recite specific responsibilities, in words, on the day of a baptism. Everyone is happy (except sometimes the babies!). Everyone goes home. Yay. Done. Check that off the to do list. But many godparents go beyond that, and the roles they play, when they choose to do so, can be much larger than specific recited words. When I think of my life, my godparents, though not directly involved in my faith for the most part, were (and are) a big part of my life.
I have 2 sets of godparents. One set knew my mom through her university (initially) while the other knew my dad through his university (initially), or that's what I know, and it may be a bit different. The set, or couple, through my mom, remembered to send me, every year for my birthday, a charm to add to a charm bracelet they had given me. I couldn't wait to see what the next charm would be. Their daughter was also named Beth, and to this day we debate which one of us is Beth #1 versus Beth #2 (She's Beth #1 because she is older, but she claims we are equal. I'm fine with #2 and think we can still be equal).
The other couple had/has 2 kids (now adults), close in age to the 3 of us in my family. Our 2 families have always been close. We spent every Thanksgiving and Christmas together growing up. I played soccer and ran track with their daughter. She lives in Germany but we get together when she is here (which is unexpectedly now, but we will get to see each other). Every Thanksgiving and Christmas we would plot a get-away-from-parents strategy. But first, lots of appetizers! Then, dinner... the shorter the better, with lots of food! During dinner we would start to exchange glances - who was going to make the first move? There was a movie and games elsewhere, away from this formal talking of dull grown-ups! One kid would ask to be excused and we would all watch to see if it meant it was time. And soon, we were off! Games, movies, ..., did we have to leave? Well, we knew we would see each other soon. Those were the really great times.
Both couples have always been there for me during the good times and the bad - graduations, MS diagnosis, life with MS, sports, music, and the list goes on. We only went to church together on the Sunday when I was confirmed (I could be wrong about that), but they influenced my life by the examples they set. One continued to send Lori cards in the mail after she (my godmother) had a stroke; she had her stroke as I started Ampyra, so would watch my progress and compare it to hers. In a sense we were on journeys together - improving. But then the journeys diverged and for a bit, I struggled. I knew she would want me to keep going, to keep getting better. But I didn't know the journeys would diverge like that, and so there was a strange point when I felt a feeling of being alone, even while knowing she wouldn't want this. I was stuck. Gradually I moved on and continued my journey, subconsciously recognizing that 2 journeys cannot remain in parallel forever, and knowing she wants the best for me.
Another godparent was there when Lori was born. My main nurse would tell me how it was impossible to keep my mom, my godmother, and my mother-in-law in the official waiting room because they were so excited. On the day Lori was born, 2.5 weeks early, this godmother who came to the hospital was really supposed to be coming with my mom, to my house, to set up the baby room. Plans change when babies come! She smiled and was so happy for us all, and I was so happy she could be there. As an adult I think I saw her more than as a child. She visited me when I lived in Minnesota and was so happy to take the elevator with me, instead of the escalator, because she said she had always hated escalators and didn't feel comfortable using them.
And so family is inclusive of my godparents. They taught me faith sometimes in the traditional way, but more often by just being there, by just being them. What has been very difficult is a certain, sudden "role" switch - instead of being the one to follow, I am leading my life and they are in the background. This realization of role-switching has come at unexpected, and always unwelcome times, feeling like punches in the stomach.
Sometimes we must say goodbye, always before we are ready, for some reason never feeling right, feeling like it wasn't supposed to happen, even though that makes no sense. It is difficult to tell people - oh, it's godparents - for many godparents didn't have such a large role - for many, they weren't family. But for me, they always were and are. I continue, wondering if I can be at all as incredibly wonderful as they have been.
And as this happens, I continue to search for what I think they wanted for me...
peace.
Friday, January 3, 2014
Sunday, December 22, 2013
Glances
As I said in my last blog entry, sermons this Advent have centered around us (people listening to the sermons) being invited to do various things in a more conscious way (see last blog entry for a few of those). It's a lot about noticing the world around us more consciously, with God in the middle of all of it.....
I went to Target to shop for Christmas presents recently. My daughter had a playdate so she was gone and couldn't ask to go with me. After the past 2 days of a few too many stores, maybe she wouldn't even want to go to Target! That's another story.
When I arrived at Target I parked next to a guy who slowly got out of his car, glanced at me, and got out a walking stick for each arm - not as replacements to his arms (!) but as sticks that he used to help him with balance as he walked. Maybe some would call them canes but they clearly weren't, and they weren't the crutch things you see people use sometimes. They were like the walking sticks I used to use because I hated the thought of a cane in my late 20s (canes are ugly), and the walking stick actually gave more stability than a cane. The man slowly walked into Target as I sat in my car, finishing an email or something on my iPad. I wasn't quite ready to go into Target, but I sat and wondered how he was going to navigate the store with the walking sticks. Then I realized he was probably getting exercise to get into the store and then would use an electric cart if he needed to cover the whole store. Sounds like something I would do (but I had already done my walking exercise for the day).
I finished whatever random thing I was doing on my iPad and got Nemo, my wheelchair, out of the car. Then I did my shopping.
I finished and came back to my car to see his car was still there. I put Nemo away and was leaning on the edge of my van for balance to get in. As I did this, I saw him arrive at his car using an electric cart. He put his things in the car and then, while I wasn't looking, got rid of the electric cart and, as I happened to look back his direction, saw him leaning on his car to get in.
He looked at me and I looked at him. That glance seemed to hold a lot, perhaps only for a certain group of people. The glance said we are through with our shopping, we got what we wanted, and we're ready to go home. But it said something more that is hard to describe - 2 people with seemingly similar disabilities knew the shopping was not as simple as getting what we/I needed and going home. Shopping can involve we/I simply having the energy to go to the store (this is different than the average energy someone without a disability faces when going to a store), an assessment of how much we/I needed to buy, and how much more energy we/I would have past what we needed to buy. I suppose it's somewhat like if you have an infant, you do not get to choose many aspects of shopping - you get to shop as much as the infant allows, which will differ for each shopping trip, depending on the baby - totally out of the parent's control. This is still a bit different - it's about having half, or less, the energy of someone without a disability before even getting to a store, and having to add into the equation things like getting a wheelchair out of a car and back in, as well as the after-shopping events of getting home and having the energy to get in the house without falling, etc.
In the brief glance, we exchanged that we got the things we planned to get in shopping, and were done. It's then that we both probably went home and not on to another store. With a disability, energy is carefully prioritized.
After the glance, I noticed he had his key in his mouth as he leaned against his car, working his way toward the door. Wow - someone else does that too.
...
There's a wonder of God around us during this season. If we choose to pause even if it's to spend a few minutes with the iPad; if we choose to notice those around us, we may see people so similar to us, at a time when perhaps we may feel like we're the only one. I wasn't the only one shopping that day with a set of limits imposed on me. Look, God would seemingly say, there is someone just like you. Now take up your things and go home, both of you.
We've been invited into the wonder of it all, God at work in the world. Sometimes it is in small moments like these that we find amazing wonder.
Peace.
I went to Target to shop for Christmas presents recently. My daughter had a playdate so she was gone and couldn't ask to go with me. After the past 2 days of a few too many stores, maybe she wouldn't even want to go to Target! That's another story.
When I arrived at Target I parked next to a guy who slowly got out of his car, glanced at me, and got out a walking stick for each arm - not as replacements to his arms (!) but as sticks that he used to help him with balance as he walked. Maybe some would call them canes but they clearly weren't, and they weren't the crutch things you see people use sometimes. They were like the walking sticks I used to use because I hated the thought of a cane in my late 20s (canes are ugly), and the walking stick actually gave more stability than a cane. The man slowly walked into Target as I sat in my car, finishing an email or something on my iPad. I wasn't quite ready to go into Target, but I sat and wondered how he was going to navigate the store with the walking sticks. Then I realized he was probably getting exercise to get into the store and then would use an electric cart if he needed to cover the whole store. Sounds like something I would do (but I had already done my walking exercise for the day).
I finished whatever random thing I was doing on my iPad and got Nemo, my wheelchair, out of the car. Then I did my shopping.
I finished and came back to my car to see his car was still there. I put Nemo away and was leaning on the edge of my van for balance to get in. As I did this, I saw him arrive at his car using an electric cart. He put his things in the car and then, while I wasn't looking, got rid of the electric cart and, as I happened to look back his direction, saw him leaning on his car to get in.
He looked at me and I looked at him. That glance seemed to hold a lot, perhaps only for a certain group of people. The glance said we are through with our shopping, we got what we wanted, and we're ready to go home. But it said something more that is hard to describe - 2 people with seemingly similar disabilities knew the shopping was not as simple as getting what we/I needed and going home. Shopping can involve we/I simply having the energy to go to the store (this is different than the average energy someone without a disability faces when going to a store), an assessment of how much we/I needed to buy, and how much more energy we/I would have past what we needed to buy. I suppose it's somewhat like if you have an infant, you do not get to choose many aspects of shopping - you get to shop as much as the infant allows, which will differ for each shopping trip, depending on the baby - totally out of the parent's control. This is still a bit different - it's about having half, or less, the energy of someone without a disability before even getting to a store, and having to add into the equation things like getting a wheelchair out of a car and back in, as well as the after-shopping events of getting home and having the energy to get in the house without falling, etc.
In the brief glance, we exchanged that we got the things we planned to get in shopping, and were done. It's then that we both probably went home and not on to another store. With a disability, energy is carefully prioritized.
After the glance, I noticed he had his key in his mouth as he leaned against his car, working his way toward the door. Wow - someone else does that too.
...
There's a wonder of God around us during this season. If we choose to pause even if it's to spend a few minutes with the iPad; if we choose to notice those around us, we may see people so similar to us, at a time when perhaps we may feel like we're the only one. I wasn't the only one shopping that day with a set of limits imposed on me. Look, God would seemingly say, there is someone just like you. Now take up your things and go home, both of you.
We've been invited into the wonder of it all, God at work in the world. Sometimes it is in small moments like these that we find amazing wonder.
Peace.
Sunday, December 15, 2013
In an instant
It is Advent. This Advent, we've (people who have been to our church the past couple weeks) been "invited," via sermons to do a couple things. We have been invited, during this time of Advent, to look where God is at work around us, as well as in our lives (also to find God moments, not that we necessarily feel God's presence, but we do know that God is at work). We have also been invited to find moments/times of silence during this busy season, to think about things other than the busy season. During these sermons, I think terrific, I will do this! God is at work - yes, God is! And although I'd like to say I made time for silence, the reality, this year, is that silence has been forced on me. It has been an interesting Advent.
This past week, when I was thinking I'd find these God moments and times when God is at work in my life, I was slammed with the reminded that, in an instant, life can change for anyone. Just when everything seems to be going as expected, the unexpected occurs.
Several college Facebook friends of mine from college have a friend, who also went to Kenyon, who left this world at too young an age this past week, after too short a battle with something she shouldn't have had at her age. She had a blog which I have read mostly, and what was evident were sudden changes. After the initial shock of "you have this," a physician doubted she had any chance. Pretty soon, she proved him wrong. Ha! Take that! It's gone! But then boom! It was back, even though she felt fine. In between times of good and bad news constantly causing her to shift the course of her life, she traveled, spent time with her kids and husband, and seemed to love life. She showed what I would imagine we all strive to have in life - happiness, the ability to have fun, relax, and laugh, and not to take things too seriously (unless that is necessary). She showed love of life in the face of horrific "surprises" that showed the fragility of life. Her blog made me think that I could do a bit better in my life, where unexpected good and bad things happen, in an instant, without warning.
Back to my life, finding where God is, and silence. I like to think I'm in charge and my overactive immune system means I will never get sick. Everyone else gets sick. I do not. I fought off a small something - a little sore throat one day, something else the next, etc. I'm in charge. Hey God, we're good - I'm healthy, all is well. But then... last weekend my daughter had dance recitals so I was out in the cold a lot (REALLY COLD!), plus my daughter was sick. I was fine. Nothing could touch me. Yup, all is well. I had a conference and a final choir rehearsal for our concert... I was coasting! I had just walked my best 400 time since I started walking around the track. Check that out! Last season I ended going around a track in just under 17 minutes. I'm now almost under 15 minutes! I rock! God was doing good things! Unstoppable Beth!
And then, I coughed. Then I coughed again. And again. Over the day this cough grew and grew (but just a dry cough) and in between coughs I would gasp for air. No God, I thought we had a deal or something! I was unstoppable, trying to break 15 minutes. I really did not have time for some strange virus.
I went to bed.
Every morning I wonder if I will make it out of bed. I think many people with MS do that. I lay in bed and ponder whether my legs will work. Then I sit on the side of the bed and do the same thing. Then I "launch" myself and discover that all is well.
But that next morning I lay in bed and wondered how I was even going to roll over. Everything had changed. This was not the God moment I wanted. It also was not the type of silence I wanted. I mean, no, I didn't want to lie in the silence and wonder if I could roll over.
I was sick. I had a fever. When I get a fever, I can't walk. I can't even get up. And that morning, rolling was questionable. I rolled... a bit too far... off the bed. Dang! Bad miss. It was quiet. The God moment was me asking God how I was going to make it to the bathroom! I scooted myself to my wheelchair which I had left close to the bed, because I had started to feel sick the previous night. When this stuff happens, doing something as simple as making it to the bathroom gets broke into little steps... Scoot to the wheelchair... step 1 complete. Step 2: get into wheelchair, with no strength. But I did it. Step 3: Wheel to bathroom made and attempt to pull myself up onto the sink and walk a few steps to the toilet. Step 4 land on toilet. I made it. I sat there, and sat, and rested. Silence can be scary, right God?
Now, to get up from the toilet. Ha! God, is this a joke? It is silent but this God series of moments has not left finding the love of God's work. Right. Standing was not an option. Nothing was working. I scooted myself onto the floor and then over to my wheelchair. This is the part where I am supposed to pull myself onto the wheelchair. After about 10 attempts and 20 stern words with God on how this sucks, I realized I didn't have the strength. So I pushed the wheelchair out of the bathroom and scooted out of the bathroom, to a white chair that is lower than the wheelchair. Great idea!
Once I pulled myself into the white chair, it was a great time to rest. Boom! My leg jumped..it didn't want to stay still. So, I transferred to my wheelchair. Done. There is still silence and God, you got me into my wheelchair.
The rest of the day was full of more silence and stern words with God.
Dear God: It is Advent. I'm looking for good moments here. I don't need periods of silence where I contemplate how to get off the floor. Everything is wrong, turned upside down.
Amazingly, after 2 days, I got over this.
Now I can search for the good. Now I can search for moments of silence. Now I can do what was intended. I can follow the example of the lady mentioned near the beginning of this blog.
Tonight we had our lessons and carols service. At the end, we sing a Peace song. It's beautiful. Out of nowhere I was caught in a God moment, with the good of this service spreading throughout the sanctuary and bringing tears to my eyes. In an instant, the moment was gone. There will be other moments. I'll find the silent moments.
It's all there - as we live moment to moment, not knowing what to expect, and when. We do know that God is there, even if God takes the words thrown toward God aren't nice.
Peace.
This past week, when I was thinking I'd find these God moments and times when God is at work in my life, I was slammed with the reminded that, in an instant, life can change for anyone. Just when everything seems to be going as expected, the unexpected occurs.
Several college Facebook friends of mine from college have a friend, who also went to Kenyon, who left this world at too young an age this past week, after too short a battle with something she shouldn't have had at her age. She had a blog which I have read mostly, and what was evident were sudden changes. After the initial shock of "you have this," a physician doubted she had any chance. Pretty soon, she proved him wrong. Ha! Take that! It's gone! But then boom! It was back, even though she felt fine. In between times of good and bad news constantly causing her to shift the course of her life, she traveled, spent time with her kids and husband, and seemed to love life. She showed what I would imagine we all strive to have in life - happiness, the ability to have fun, relax, and laugh, and not to take things too seriously (unless that is necessary). She showed love of life in the face of horrific "surprises" that showed the fragility of life. Her blog made me think that I could do a bit better in my life, where unexpected good and bad things happen, in an instant, without warning.
Back to my life, finding where God is, and silence. I like to think I'm in charge and my overactive immune system means I will never get sick. Everyone else gets sick. I do not. I fought off a small something - a little sore throat one day, something else the next, etc. I'm in charge. Hey God, we're good - I'm healthy, all is well. But then... last weekend my daughter had dance recitals so I was out in the cold a lot (REALLY COLD!), plus my daughter was sick. I was fine. Nothing could touch me. Yup, all is well. I had a conference and a final choir rehearsal for our concert... I was coasting! I had just walked my best 400 time since I started walking around the track. Check that out! Last season I ended going around a track in just under 17 minutes. I'm now almost under 15 minutes! I rock! God was doing good things! Unstoppable Beth!
And then, I coughed. Then I coughed again. And again. Over the day this cough grew and grew (but just a dry cough) and in between coughs I would gasp for air. No God, I thought we had a deal or something! I was unstoppable, trying to break 15 minutes. I really did not have time for some strange virus.
I went to bed.
Every morning I wonder if I will make it out of bed. I think many people with MS do that. I lay in bed and ponder whether my legs will work. Then I sit on the side of the bed and do the same thing. Then I "launch" myself and discover that all is well.
But that next morning I lay in bed and wondered how I was even going to roll over. Everything had changed. This was not the God moment I wanted. It also was not the type of silence I wanted. I mean, no, I didn't want to lie in the silence and wonder if I could roll over.
I was sick. I had a fever. When I get a fever, I can't walk. I can't even get up. And that morning, rolling was questionable. I rolled... a bit too far... off the bed. Dang! Bad miss. It was quiet. The God moment was me asking God how I was going to make it to the bathroom! I scooted myself to my wheelchair which I had left close to the bed, because I had started to feel sick the previous night. When this stuff happens, doing something as simple as making it to the bathroom gets broke into little steps... Scoot to the wheelchair... step 1 complete. Step 2: get into wheelchair, with no strength. But I did it. Step 3: Wheel to bathroom made and attempt to pull myself up onto the sink and walk a few steps to the toilet. Step 4 land on toilet. I made it. I sat there, and sat, and rested. Silence can be scary, right God?
Now, to get up from the toilet. Ha! God, is this a joke? It is silent but this God series of moments has not left finding the love of God's work. Right. Standing was not an option. Nothing was working. I scooted myself onto the floor and then over to my wheelchair. This is the part where I am supposed to pull myself onto the wheelchair. After about 10 attempts and 20 stern words with God on how this sucks, I realized I didn't have the strength. So I pushed the wheelchair out of the bathroom and scooted out of the bathroom, to a white chair that is lower than the wheelchair. Great idea!
Once I pulled myself into the white chair, it was a great time to rest. Boom! My leg jumped..it didn't want to stay still. So, I transferred to my wheelchair. Done. There is still silence and God, you got me into my wheelchair.
The rest of the day was full of more silence and stern words with God.
Dear God: It is Advent. I'm looking for good moments here. I don't need periods of silence where I contemplate how to get off the floor. Everything is wrong, turned upside down.
Amazingly, after 2 days, I got over this.
Now I can search for the good. Now I can search for moments of silence. Now I can do what was intended. I can follow the example of the lady mentioned near the beginning of this blog.
Tonight we had our lessons and carols service. At the end, we sing a Peace song. It's beautiful. Out of nowhere I was caught in a God moment, with the good of this service spreading throughout the sanctuary and bringing tears to my eyes. In an instant, the moment was gone. There will be other moments. I'll find the silent moments.
It's all there - as we live moment to moment, not knowing what to expect, and when. We do know that God is there, even if God takes the words thrown toward God aren't nice.
Peace.
Sunday, November 10, 2013
Shoes, walking, and other thoughts
One woman wants to walk down the aisle of her sister's wedding, wearing a pair of high-heeled shoes.
One man states: "You gotta crawl before you can walk. I gotta retrain everything. I'm like a giant kid -- a big baby." (Craig F. Walker, The Denver Post)
- "I will walk again."
- "Will I walk again?"
(www.denverpost.com/paralysis)
---------------------------------------------------------------------------------------------------
I wanted to walk around the track. I did.
I want to run.
How far? When?
God?
All similar, yet each an individual, each very unique.
Walking. Writing. Reaching. Bathroom.
Running. Dreaming. Doing. Step by small step.
No Cure.
Look Up. Plead. Bang fists on ground. Yell at God.
Progress in the absence of a cure.
"Locomotor therapy."
Stimulate nerves using electrodes to deliver shocks to dormant muscles; Remind muscles how they are supposed to move.
Bioness. A device which sends signals directly to muscles to help lift the foot. Approved for incomplete spinal cord injuries. Considered experimental for MS. Muscles strengthen.
Ampyra.
Improve nerve conduction.
Walk. Strengthen. Hope.
Physical therapy. A constant, for life.
Hope. Hope does not disappoint; hope encourages. Never give up, ever.
Continued progress. Kneel down at ground level and rise up, using a chair to teach mucles how this works. Try again. Eliminate chair. Try again. Think quads; push up. Think butt muscles. Push up harder. Think back muscles. Reach. Hold. Balance. Hold. Sit down.
Look Up. Smile. Give thanks to God. As for more.
Get back to work.
Individuals. Individual needs.
Critical support from family and friends.
Individual. Unique. Alone. One woman working toward wearing heels for her sister's wedding; another man working on crawling; another person using exoskeleton;
Me, my walker, Bioness. God?
Alone. Yet there are other people who are alone. And then we are, together.
I have new incentive to get back and test limits instead of dwelling on alone and leaning about why bother.
Peace.
One man states: "You gotta crawl before you can walk. I gotta retrain everything. I'm like a giant kid -- a big baby." (Craig F. Walker, The Denver Post)
- "I will walk again."
- "Will I walk again?"
(www.denverpost.com/paralysis)
---------------------------------------------------------------------------------------------------
I wanted to walk around the track. I did.
I want to run.
How far? When?
God?
All similar, yet each an individual, each very unique.
Walking. Writing. Reaching. Bathroom.
Running. Dreaming. Doing. Step by small step.
No Cure.
Look Up. Plead. Bang fists on ground. Yell at God.
Progress in the absence of a cure.
"Locomotor therapy."
Stimulate nerves using electrodes to deliver shocks to dormant muscles; Remind muscles how they are supposed to move.
Bioness. A device which sends signals directly to muscles to help lift the foot. Approved for incomplete spinal cord injuries. Considered experimental for MS. Muscles strengthen.
Ampyra.
Improve nerve conduction.
Walk. Strengthen. Hope.
Physical therapy. A constant, for life.
Hope. Hope does not disappoint; hope encourages. Never give up, ever.
Continued progress. Kneel down at ground level and rise up, using a chair to teach mucles how this works. Try again. Eliminate chair. Try again. Think quads; push up. Think butt muscles. Push up harder. Think back muscles. Reach. Hold. Balance. Hold. Sit down.
Look Up. Smile. Give thanks to God. As for more.
Get back to work.
Individuals. Individual needs.
Critical support from family and friends.
Individual. Unique. Alone. One woman working toward wearing heels for her sister's wedding; another man working on crawling; another person using exoskeleton;
Me, my walker, Bioness. God?
Alone. Yet there are other people who are alone. And then we are, together.
I have new incentive to get back and test limits instead of dwelling on alone and leaning about why bother.
Peace.
Friday, October 25, 2013
Hi Beth
"Hi Beth. How can I help you today?"
When you have a chronic condition like MS, it's important to find a physician who you like and trust. What makes this happen? It's so different for everyone. Today I've been thinking of what is important to me.
It's that my physician calls me Beth. He called me that in my appointment today, and he ended with my name. I never realized that's important, but it is. They have my name in their system so I am never called Elizabeth. It's also personal.
I didn't want to talk about MS as the main thing, so we talked about the other thing. Then he still checked MS because it's his job, he still told me about the new MS drug I won't take because it's his job. He also did this stuff, I think, because he cares. That's something else that's important. He knows I won't take the new drug, but he tells me anyway.
And there are the tests. He's still interested in the ulnar neuropathy I have which is not MS. He knows I won't have surgery for that, so he told me about a brace I could wear at night which might help. And then he said, "I'm not a dermatologist, but right here your hands are way too dry and you need to work on that, and here's a suggestion." It's about caring.
He's a numbers guy and I love numbers so he spits those out and I love numbers too.
I think he "gets" Beth. She's going to walk. She knows what she wants and doesn't, and it's hard to change her mind so don't try to hard, but catch her with the unexpected so she knows you care.
The office staff seemed so happy and I like that, and they said , "Bye, Beth." You can tell when employees are happy. That's important.
When I walked out, he watched and said I look better than in June. That gives me incentive. I've been in a bit of a funk lately, but what other people say builds me and helps. There's more to do... more progress to be made... I know that. But I think it's taken a few other voices to help me try to get back on track from feeling something... I don't know what it is... stuck... I've even brought this to the attention of God... get me back on track.
Slowly I'll find my way. But back to physicians - it's about feeling that they do know a lot, but with all that knowledge, that they have some level of caring, and that they use my name. Beth
Peace.
When you have a chronic condition like MS, it's important to find a physician who you like and trust. What makes this happen? It's so different for everyone. Today I've been thinking of what is important to me.
It's that my physician calls me Beth. He called me that in my appointment today, and he ended with my name. I never realized that's important, but it is. They have my name in their system so I am never called Elizabeth. It's also personal.
I didn't want to talk about MS as the main thing, so we talked about the other thing. Then he still checked MS because it's his job, he still told me about the new MS drug I won't take because it's his job. He also did this stuff, I think, because he cares. That's something else that's important. He knows I won't take the new drug, but he tells me anyway.
And there are the tests. He's still interested in the ulnar neuropathy I have which is not MS. He knows I won't have surgery for that, so he told me about a brace I could wear at night which might help. And then he said, "I'm not a dermatologist, but right here your hands are way too dry and you need to work on that, and here's a suggestion." It's about caring.
He's a numbers guy and I love numbers so he spits those out and I love numbers too.
I think he "gets" Beth. She's going to walk. She knows what she wants and doesn't, and it's hard to change her mind so don't try to hard, but catch her with the unexpected so she knows you care.
The office staff seemed so happy and I like that, and they said , "Bye, Beth." You can tell when employees are happy. That's important.
When I walked out, he watched and said I look better than in June. That gives me incentive. I've been in a bit of a funk lately, but what other people say builds me and helps. There's more to do... more progress to be made... I know that. But I think it's taken a few other voices to help me try to get back on track from feeling something... I don't know what it is... stuck... I've even brought this to the attention of God... get me back on track.
Slowly I'll find my way. But back to physicians - it's about feeling that they do know a lot, but with all that knowledge, that they have some level of caring, and that they use my name. Beth
Peace.
Sunday, October 20, 2013
It's all about the shoes
Beeeep! The Bioness control unit went dead, completely dead. It was Tuesday. We were to leave for NYC on Sat. This was not good. Without my Bioness devices, I can't walk with shoes, unless, unless, I go back to my AFOs, which are ugly leg braces. After leaving those old ugly leg braces in my car for well over a year as backups, I had decided to remove them from my car. The AFOs have to be worn with ugly, no good, big, clunky shoes. Take my word for it. One beauty of Bioness is I can wear somewhat regular, non-clunky shoes. Take my word for it. The explanation needs pictures and would be boring. Would I have to go to NYC with the big clunky ugly and now old shoes? Oh no. Please no. The Bioness devices have helped my walking so much. I look a lot less like a duck now... I'm not swinging my legs out as much. I am walking heel to toe again. But when I think about it, the biggest plus is the shoes. And so you know, the controller just needed a new battery, so I'm ok now. I got to take the Bioness devices to NYC and wear regular shoes.
This sudden beeeeeeeeeeep! made me think back to the days of the AFOs. It started with a big ugly tan one. I was having trouble walking down hills. I met with an orthopedist, who had a big ugly tan AFO thing made, which required ugly clunky shoes in which to insert the thing, but allowed me to walk down hills again because it helped me lift my toes so I didn't trip. Over time what I didn't realize was that by helping, it meant I didn't use some muscles as much and they atrophied... translation: the muscles were wasting away.
When I started taking Ampyra, I went to physical therapy and the therapist thought a different brace, a slightly less ugly black one, might help me more. I saw the same orthopedist... he owns a place that makes and sells AFOs, but he only makes the ugly tan ones, so he was a bit tentative about me getting a black one which would not be made by his company. Surely they weren't as good as ugly tan. Then he held up a different kind of black one and laughed at it, as if it was useless, so at least I wasn't asking for it! What he didn't know was that, at physical therapy, I was using that exact other black brace which made him laugh, on my other leg, and it was working well. But we were still dealing with clunky ugly and now old shoes. Muscles were still wasting. But the black AFO did look and function better. Thank goodness for physical therapists!
Finally... enter Bioness. The guy who makes the ugly tan AFOs agreed to meet with me and the Bioness representative, who as a side note drove a BMW. In 90+ degree weather I went to his office where the air-conditioning wasn't working well, and in the 85 degree heat I proved that I couldn't use the Bioness, because my walking wasn't good enough, in the 85 degree heat. I was destined for big clunky ugly old shoes with at best ugly black AFOs. Something didn't feel right.
Almost a year later a friend of my mom's had me try her Bioness. It was a totally different experience. Rather than go back to the ugly tan AFO sales guy who at one point also told me to look toward heaven instead of thinking about this life so much (true story!), I went through physical therapists who were not Bioness reps and also did not make ugly AFOs. They determined Bioness would definitely help, first on the right leg, then on the left. There is no muscle wasting, because these devices stimulate muscle contraction, the kind of contraction that allows my toes to go up.
And then, guess what?!!
Shoes, shoes, shoes! I realized I didn't have to wear the ugly clunky old shoes anymore. I didn't have to talk to the "buy the ugliest tan AFO ever while I tell you to look to heaven" guy anymore. I realized there are those people who claim to be out there to help people like me, and maybe they do help or think they help while they are working on their profits. And then there are, in general, the physical therapists. They want to see people be the best they can be. They want to push people toward that end. And if the end goal is the shoes, then they are all for it. Over the past 3 years, physical therapists have been wonderful.
And the people selling the AFOs? Most of them are fine. I'm sure many have good intentions. AFOs are appropriate for many people. But what if they aren't? Can the AFO types step back and recognize this is an area for physical therapists to determine? I do wonder if the guy who wanted so badly for me to wear the ugly tan AFO which caused muscle deterioration, who is also the same guy who told me to look toward heaven because life on earth is only temporary, is clinging to his business.
A big problem is that while I can look toward heaven, I still am making the most of life here on earth. I am not going to just give up. Would he? Wouldn't he opt for the Bioness?
At the end of the day, it's about the shoes, I'm on earth, and since I'm here, I want shoes I like.
Peace.
This sudden beeeeeeeeeeep! made me think back to the days of the AFOs. It started with a big ugly tan one. I was having trouble walking down hills. I met with an orthopedist, who had a big ugly tan AFO thing made, which required ugly clunky shoes in which to insert the thing, but allowed me to walk down hills again because it helped me lift my toes so I didn't trip. Over time what I didn't realize was that by helping, it meant I didn't use some muscles as much and they atrophied... translation: the muscles were wasting away.
When I started taking Ampyra, I went to physical therapy and the therapist thought a different brace, a slightly less ugly black one, might help me more. I saw the same orthopedist... he owns a place that makes and sells AFOs, but he only makes the ugly tan ones, so he was a bit tentative about me getting a black one which would not be made by his company. Surely they weren't as good as ugly tan. Then he held up a different kind of black one and laughed at it, as if it was useless, so at least I wasn't asking for it! What he didn't know was that, at physical therapy, I was using that exact other black brace which made him laugh, on my other leg, and it was working well. But we were still dealing with clunky ugly and now old shoes. Muscles were still wasting. But the black AFO did look and function better. Thank goodness for physical therapists!
Finally... enter Bioness. The guy who makes the ugly tan AFOs agreed to meet with me and the Bioness representative, who as a side note drove a BMW. In 90+ degree weather I went to his office where the air-conditioning wasn't working well, and in the 85 degree heat I proved that I couldn't use the Bioness, because my walking wasn't good enough, in the 85 degree heat. I was destined for big clunky ugly old shoes with at best ugly black AFOs. Something didn't feel right.
Almost a year later a friend of my mom's had me try her Bioness. It was a totally different experience. Rather than go back to the ugly tan AFO sales guy who at one point also told me to look toward heaven instead of thinking about this life so much (true story!), I went through physical therapists who were not Bioness reps and also did not make ugly AFOs. They determined Bioness would definitely help, first on the right leg, then on the left. There is no muscle wasting, because these devices stimulate muscle contraction, the kind of contraction that allows my toes to go up.
And then, guess what?!!
Shoes, shoes, shoes! I realized I didn't have to wear the ugly clunky old shoes anymore. I didn't have to talk to the "buy the ugliest tan AFO ever while I tell you to look to heaven" guy anymore. I realized there are those people who claim to be out there to help people like me, and maybe they do help or think they help while they are working on their profits. And then there are, in general, the physical therapists. They want to see people be the best they can be. They want to push people toward that end. And if the end goal is the shoes, then they are all for it. Over the past 3 years, physical therapists have been wonderful.
And the people selling the AFOs? Most of them are fine. I'm sure many have good intentions. AFOs are appropriate for many people. But what if they aren't? Can the AFO types step back and recognize this is an area for physical therapists to determine? I do wonder if the guy who wanted so badly for me to wear the ugly tan AFO which caused muscle deterioration, who is also the same guy who told me to look toward heaven because life on earth is only temporary, is clinging to his business.
A big problem is that while I can look toward heaven, I still am making the most of life here on earth. I am not going to just give up. Would he? Wouldn't he opt for the Bioness?
At the end of the day, it's about the shoes, I'm on earth, and since I'm here, I want shoes I like.
Peace.
Monday, September 2, 2013
My little room
We spent this past weekend at Rainbow Trails Lutheran Camp in Colorado, where there is a Labor Day retreat. Most people go to this to get away and relax - I do too. Each year I wonder if it will be as "magical" as in the past, and each year it is.
The past 2 years, I've gone to the retreat with some serious "issues," and I've found the retreat a place/way to hand the issues over to God, as much as possible, so I can just sleep better at night. This year I didn't have the same big issues. Something was/is bugging me; I'm not sure what it was/is, and I really didn't know if I would have the same type of experience.
This year was great in many ways. One thing I realize when I go to things, or one thing I remember when I go to things, is that I really don't like to be alone. That may surprise some who know me or knew me when I was younger, but it's true. I pack everything up from our cabin for the day, and I don't really go back to the cabin until night. I don't want to go back simply because I don't want to be alone. I enjoy getting to know people, and this year I met some new people and saw people I had met in the past. So there is that.
One thing I think was/is bugging me this year has been the effects of the summer heat. It hasn't been as hot this summer as it was last year, but I've been to some hot, all day track meets for my daughter, and doing that has been killing me. This retreat has been the place where I realize my legs do still work, and I think I was nervous about it this year. But, they worked! It's fascinating... drop the temperature by 20 degrees and everything works better. I was standing straighter and adding a new drill I made up after working with my physical therapist. Someone asked me how often I exercise and I responded "as much as possible." The temperature dropped even further with a huge rainstorm, and I just kept walking. This year I was walk much longer than in previous years.
And finally, there's the handing things over to God thing. There's a song called "My Little Room" that we sing each year. The lyrics are something like this:
"When the lightning’s laughing/ And the thunder laps are crashing/ Remind me that you’re asking, for me to go inside of My little room/ where I can pray/ and trust that God will find a way to/ even on the darkest night/ fill the sky with little sparks of light."
We were singing this the first night and it really hit me - there are so many parts of life that are difficult; there are many times in life when thunder is crashing, we wonder if things will work out, perhaps we doubt ourselves and our abilities, and we wonder about the motives of others. These are the times when we should pray and trust that the promise of God's Grace will guide us. Let go of so many things that are overwhelming about life.
The weekend was as amazing as it was in other years. In other years, I've had specific "issues." This year, all the little things can creep up on us, and rather than jumping from one thing to the next without trying to hit the panic button, maybe we should take a step back and trust God.
Peace.
The past 2 years, I've gone to the retreat with some serious "issues," and I've found the retreat a place/way to hand the issues over to God, as much as possible, so I can just sleep better at night. This year I didn't have the same big issues. Something was/is bugging me; I'm not sure what it was/is, and I really didn't know if I would have the same type of experience.
This year was great in many ways. One thing I realize when I go to things, or one thing I remember when I go to things, is that I really don't like to be alone. That may surprise some who know me or knew me when I was younger, but it's true. I pack everything up from our cabin for the day, and I don't really go back to the cabin until night. I don't want to go back simply because I don't want to be alone. I enjoy getting to know people, and this year I met some new people and saw people I had met in the past. So there is that.
One thing I think was/is bugging me this year has been the effects of the summer heat. It hasn't been as hot this summer as it was last year, but I've been to some hot, all day track meets for my daughter, and doing that has been killing me. This retreat has been the place where I realize my legs do still work, and I think I was nervous about it this year. But, they worked! It's fascinating... drop the temperature by 20 degrees and everything works better. I was standing straighter and adding a new drill I made up after working with my physical therapist. Someone asked me how often I exercise and I responded "as much as possible." The temperature dropped even further with a huge rainstorm, and I just kept walking. This year I was walk much longer than in previous years.
And finally, there's the handing things over to God thing. There's a song called "My Little Room" that we sing each year. The lyrics are something like this:
"When the lightning’s laughing/ And the thunder laps are crashing/ Remind me that you’re asking, for me to go inside of My little room/ where I can pray/ and trust that God will find a way to/ even on the darkest night/ fill the sky with little sparks of light."
We were singing this the first night and it really hit me - there are so many parts of life that are difficult; there are many times in life when thunder is crashing, we wonder if things will work out, perhaps we doubt ourselves and our abilities, and we wonder about the motives of others. These are the times when we should pray and trust that the promise of God's Grace will guide us. Let go of so many things that are overwhelming about life.
The weekend was as amazing as it was in other years. In other years, I've had specific "issues." This year, all the little things can creep up on us, and rather than jumping from one thing to the next without trying to hit the panic button, maybe we should take a step back and trust God.
Peace.
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