An 18 year old girl who was diagnosed with MS about 3 years ago is currently running remarkable times in cross-country. She talks about blocking out symptoms of MS such as numbness while running, until she reaches the finish line, at which time her legs collapse on her. Here's a link to the story:
http://deadspin.com/high-school-runner-with-multiple-sclerosis-races-until-1536597747
In reading her story and watching her race, it's obvious she has extreme focus. I think that is key to as much success as possible - extreme focus - all out as long as possible.
Recently my college choir was on their annual spring tour and they came through Colorado. They were amazing - I really loved to hear them and to see my college choir director again... old meaning that was long ago - I swear he looks like he never ages.
At the end of the concert, as per tradition, alumni get to go up and sing the school's "Kokosing Farewell" song with the choir. The Kokosing is a river which runs right next to the Kenyon College campus, just for context. It's a song sung at the end of many concerts, by many groups at Kenyon, so it has a lengthy tradition.
I wondered how it was going to work with me going up to sing with the choir, assuming they still had their tradition, which they did. I figured things would all work out. And they did - it was a matter of focus.
I walked up with Bart the walker and figured out a place to stand. Stop. Stand? I don't know when I last performed standing! But it's how things happen... there I was, standing, and we were all ready to sing... except I had to lock the wheels on the walker (good thing I just got them fixed!) so Bart didn't escape as he has been known to do very recently.
It definitely wasn't the best standing position, but there I was, suddenly realizing, dang! The Bioness beepers are still on and at any moment could send a signal to my leg to move. Not good. Focus.
I blocked it out. It's not a long song, but it was a long time for me to focus. I blocked out the Bioness. My body wanted to bend but I fought it with the focus of singing, even though I really wanted to lean. My mom took a video and you can't tell, but by the end of the "focused" singing, my arms were shaking. Once done, I had to walk back to my seat. Not a pretty walk. The focus was done and I was tired of standing.
I don't know that I planned on standing - I figured things would work out somehow. But I'm glad I did - it's easier to move with the music that way, and sitting always makes me feel like I'm separated from the group a bit.
The Kokosing Farewell - beautiful.
Much of what seems impossible is indeed possible.
Focus.
Peace.
Sunday, March 9, 2014
Tuesday, February 25, 2014
Corn Chowder
Today someone told me, in the course of conversation, that I should make homemade corn chowder. I responded that I didn't have the time. The person responded that we all have the same amount of time, and then the person wondered why I didn't have time to make corn chowder. I told the person they should follow me around for a day. And I'll stop there. Really? Do people really think this way??
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
Sunday, February 16, 2014
21 years
February 11 has come and gone, but I did go through that day thinking of how it was the day I was diagnosed with MS, after 3 years of tests, and really, 3 years of me wondering if my mind was playing tricks on me. Maybe nothing was really wrong. But when I found out, someone said to me, "isn't it good, in a way, to know what is wrong?" Yes. I wasn't making things up.
Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids. Then I would get better, but I would never reach the point from before the relapse. I was one of the very first people on Betaseron. Then it didn't seem to be working, so I was one of the first people on Copaxone. It helped slow down MS in some ways. 5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that. Looking back, stopping that really caused MS attacks to increase in frequency. Sometimes I would get them every three months. So then I tried Avonex and Rebif for "fun." Each are shots I got to give myself and were accompanied by other not so fun symptoms...
But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.
And then came Ampyra, right when I thought nothing else would help. And it's not supposed to help. But it has. The every 4-6 month attacks have been gone for 3.5 years. I am walking, much more than ever. It's not supposed to work this well. But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.
What is hard these days is that in my environment, people don't know where I've been. My walking doesn't look like a real walk, but it keeps getting better. People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point. People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.
I guess the point of this post is to summarize where I have been... Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way. If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.
Smile. Life is good. Push the boundaries. Break all the rules. Never give up. Ever.
Thanks be to God.
Peace.
Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids. Then I would get better, but I would never reach the point from before the relapse. I was one of the very first people on Betaseron. Then it didn't seem to be working, so I was one of the first people on Copaxone. It helped slow down MS in some ways. 5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that. Looking back, stopping that really caused MS attacks to increase in frequency. Sometimes I would get them every three months. So then I tried Avonex and Rebif for "fun." Each are shots I got to give myself and were accompanied by other not so fun symptoms...
But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.
And then came Ampyra, right when I thought nothing else would help. And it's not supposed to help. But it has. The every 4-6 month attacks have been gone for 3.5 years. I am walking, much more than ever. It's not supposed to work this well. But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.
What is hard these days is that in my environment, people don't know where I've been. My walking doesn't look like a real walk, but it keeps getting better. People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point. People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.
I guess the point of this post is to summarize where I have been... Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way. If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.
Smile. Life is good. Push the boundaries. Break all the rules. Never give up. Ever.
Thanks be to God.
Peace.
Saturday, January 25, 2014
A shift
As an aside to this post, someone (one of those people who thinks they know everything) told me how they would never put anything personal about their life on the Internet, and thought no one else should either. They don't know about my blog. I suppose I put my life out here because I made the conscious decision to do so. Many people wouldn't do this, but I think you never know who might find something about my life useful in some way to them, or somehow interesting, or something else. And so I write about my life, in the open. Not everything is here, and people have told me they follow me through my blog. People should know that this is actually a small part of my life, the parts I want to share. Many of the hardest parts of my life, and some of the best parts, are not here, and it's not a political blog either. Enough said. Onward with the blog!
Go back a few months ago. I went to see my neurologist specifically because of migraines. I always felt that MS took front and center at my appointments and that migraines were an afterthought, whereas they needed to be better addressed. I get migraines in waves. If you've had a migraine you know they are horrible and incapacitating; if you haven't had one, just hope it stays that way. When I get a migraine, I try to plow through it until my body tells me it's time to sleep. I don't usually just get one migraine. I get a whole series of them over about 5 days. When I went to see him, I kept having repeated series of migraines. So I got a new medicine to add to the old one with the thought that one is longer lasting, so take the shorter-acting one with the long-acting one and eliminate the 5 day recurring migraine. Excellent!
I picked up the medication and read the warnings. That might not have been the best plan. Then I decided this new medicine might cause me to have a heart attack or something worse so I didn't take it. Really I should have called the doctor to ask. Warning labels always say stuff like that.
Over the last few months I've been relatively migraine-free and didn't need the new medicine. Excellent!
This past week I went for a follow-up with my neurologist, ready to talk all about MS, how I was improving, ..., focusing on MS.
Instead, the appointment began with a big migraine discussion! He convinced me that the new medicine was safe and said I could call should I have questions (ie if I think something is going to kill me, it's pretty easy to pick up the phone and he doesn't mind). Then he likes to check out the ulnar neuropathy I have which is caused by pushing on the handles of my walker. He thinks surgery would be fantastic; I don't; life goes on. At the end, we talked about MS, but not much. I told him about making it around the track on Christmas in under 15 minutes, something that took me over an hour a couple years ago... thank you, Ampyra. And he said yes, I am getting stronger. He thinks I look so much better than when I first saw him in June. I'll take his word for it. He must be mystified that Ampyra has done all of this, and perhaps mystified that I'm not interested in some other medicines.
So to wrap up this rambling blog, I think it's unique, and really neat, that someone realized that medical priorities may shift. I'm getting stronger physically, so I am stable. What wasn't stable was my migraines. So those moved to the front of the priority list. No other doctor has ever shifted priorities like this, so I am thankful someone finally did, because in reality, migraines can be a whole lot worse than MS.
Peace.
Go back a few months ago. I went to see my neurologist specifically because of migraines. I always felt that MS took front and center at my appointments and that migraines were an afterthought, whereas they needed to be better addressed. I get migraines in waves. If you've had a migraine you know they are horrible and incapacitating; if you haven't had one, just hope it stays that way. When I get a migraine, I try to plow through it until my body tells me it's time to sleep. I don't usually just get one migraine. I get a whole series of them over about 5 days. When I went to see him, I kept having repeated series of migraines. So I got a new medicine to add to the old one with the thought that one is longer lasting, so take the shorter-acting one with the long-acting one and eliminate the 5 day recurring migraine. Excellent!
I picked up the medication and read the warnings. That might not have been the best plan. Then I decided this new medicine might cause me to have a heart attack or something worse so I didn't take it. Really I should have called the doctor to ask. Warning labels always say stuff like that.
Over the last few months I've been relatively migraine-free and didn't need the new medicine. Excellent!
This past week I went for a follow-up with my neurologist, ready to talk all about MS, how I was improving, ..., focusing on MS.
Instead, the appointment began with a big migraine discussion! He convinced me that the new medicine was safe and said I could call should I have questions (ie if I think something is going to kill me, it's pretty easy to pick up the phone and he doesn't mind). Then he likes to check out the ulnar neuropathy I have which is caused by pushing on the handles of my walker. He thinks surgery would be fantastic; I don't; life goes on. At the end, we talked about MS, but not much. I told him about making it around the track on Christmas in under 15 minutes, something that took me over an hour a couple years ago... thank you, Ampyra. And he said yes, I am getting stronger. He thinks I look so much better than when I first saw him in June. I'll take his word for it. He must be mystified that Ampyra has done all of this, and perhaps mystified that I'm not interested in some other medicines.
So to wrap up this rambling blog, I think it's unique, and really neat, that someone realized that medical priorities may shift. I'm getting stronger physically, so I am stable. What wasn't stable was my migraines. So those moved to the front of the priority list. No other doctor has ever shifted priorities like this, so I am thankful someone finally did, because in reality, migraines can be a whole lot worse than MS.
Peace.
Saturday, January 18, 2014
Stuck
"None of us want to be here."
Those words were said 2 days prior to the situation in which I found myself, and though totally unrelated, the statement held true.
It was our first skiing trip of the season. These days, we can't drive to the mountains, ski, and then drive home all in one day. Since I sit-ski, it's too much sitting - all day - and my legs don't like it. So this time we left early Sat, skied on Sat, stayed overnight, and then came home on Sunday.
I used to have a 4 wheel drive vehicle, but for reasons of lifting things into the car, I had to get a mini-van. Mini-vans are very exciting to some people. I like my mini-van, but they are just not for me - big, and most importantly for commuting to ski, they are 2 wheel drive.
Driving up to the mountains that Sat , we encountered a lot of traffic, but it's either choose traffic Sat morning or traffic Sun afternoon and Sun afternoon seems worse. Unfortunately, there was snow and ice on the road, as well as traffic, on Sat, so it took us over 3 hours to get to skiing. I told my daughter, "Well, at least the way home can't be as long as that!" I jinxed myself.
After skiing, we spent the night where we always do - nothing is cheap, but where we stay is on the cheaper side of things. More importantly, the people who work there are always helpful, not because they have to, but because they want to help. And I like that. They also remember me every time, because somehow 2 years ago, when using the bathroom sink, it became dislodged from the wall and ended up on the floor. People ask how I didn't get hurt and I don't know. I suppose I was somewhat lucky.
A snowstorm was predicted to go through that night and I thought perfect - then we should be fine to drive home. So we ordered pizza and watched the Olympic ice-skating championships, while my daughter tried to get me engaged in playing Minecraft with her, while I tried to stay awake.
The next morning, I thought the cat was poking me until I realized it was my daughter, informing me that I had slept in! It was 7:20. That is actually sleeping in for me. Usually my leg spasms have me up by 5:30 or 6.
"Is it snowing?" I asked. "No," she replied. Hmmm... 10 minutes later, she informed me that it was snowing. 10 minutes after that I realized the storm had come late. It was just starting to snow and the wind was blowing so it was hard to see anything outside. This was not good news.
Maybe the storm would blow through quickly, by 11, when we planned to leave. Then the roads would be ok and we would miss the Sunday afternoon traffic. In reality, we should have left then. By 11 there were no good options. The storm was still there and visibility was bad. If we waited we would be with the traffic and in the middle of the storm. So we left.
Looking back, perhaps staying an extra night would have been a better plan! Looking back, there were no trucks on the road which indicates bad weather. And as I looked around me I was surrounded my 4-wheel drive vehicles.
Without weather, it's not a long journey from where we were up to the main tunnel that is the top point at which cars then head down to Denver. We drove slowly. I showed Lori how going slowly was working, how the other car next to us kept getting stuck because they were pushing hard on the accelerator pedal and tires were just spinning. 2.5 hours later, going at most 5 miles per hour, we were 2.5 miles from the tunnel, although we didn't know this because we couldn't see much.
All of a sudden, the 3-lane road became 1 lane and a slip and slide, make your own way, combo of 2 lanes. We were in the slip and slide area. After 2.5 successful slow-moving hours, we were stuck. Nothing worked; the only people getting through appeared to be the 4-wheel drive vehicles; there were lights on the left side of the road and lights and state patrol vehicles on the right side (where we were). And we were stopped. "None of us want to be here." That's what I thought right then.
A patrol car pulled next to us and informed me that there were 2.5 more miles to go and things would only get steeper. "If I were you," he said, "I'd take a tow to the tunnel."
Even though we didn't want to be where we were, we were actually very lucky to just be there right when the patrol car was there, right around all the vehicles that could get us out of this mess. I no longer needed to be afraid. The patrol car blocked me; another department of transportation vehicle came and pushed me to the side of the road, and the tow truck hooked us to it and took us to the top. What an experience to be in the van while being hooked up and towed. It was like being tilted as if going up a roller coaster, to get set, and then put back down and towed, sternly instructed not to touch anything.
We made it home! Going down from the tunnel there was still ice and snow for awhile. But then there was nothing - dry roads. Instead of 3 hours, it took us 5.5 hours to get home. But we made it!
The skiing? Well, the skiing was awesome. It was a sunny day and the snow was a somewhat sticky, powdery mix, which was slow, but good for the first day of skiing. I have trouble going left, and we found something to help correct that. As I sat in the ski office during lunch, the ski program director noted that I always sit leaning left. I had no idea! I wish people would tell me these things that then interfere with skiing. The ski instructor came up with a plan to put a small pad underneath my right side and voila! The left turn was corrected. The only problem is that now the right turn is a bit off. But I can work through that.
So, beginning the ski season was interesting. Every season seems so very different. This one I will never forget because we got home safely, because we just happened to be in the right place at the right time to get help, and for that, I am thankful for all the people who work out in these storms, in miserable conditions, to try to keep our roads safe.
Peace.
Those words were said 2 days prior to the situation in which I found myself, and though totally unrelated, the statement held true.
It was our first skiing trip of the season. These days, we can't drive to the mountains, ski, and then drive home all in one day. Since I sit-ski, it's too much sitting - all day - and my legs don't like it. So this time we left early Sat, skied on Sat, stayed overnight, and then came home on Sunday.
I used to have a 4 wheel drive vehicle, but for reasons of lifting things into the car, I had to get a mini-van. Mini-vans are very exciting to some people. I like my mini-van, but they are just not for me - big, and most importantly for commuting to ski, they are 2 wheel drive.
Driving up to the mountains that Sat , we encountered a lot of traffic, but it's either choose traffic Sat morning or traffic Sun afternoon and Sun afternoon seems worse. Unfortunately, there was snow and ice on the road, as well as traffic, on Sat, so it took us over 3 hours to get to skiing. I told my daughter, "Well, at least the way home can't be as long as that!" I jinxed myself.
After skiing, we spent the night where we always do - nothing is cheap, but where we stay is on the cheaper side of things. More importantly, the people who work there are always helpful, not because they have to, but because they want to help. And I like that. They also remember me every time, because somehow 2 years ago, when using the bathroom sink, it became dislodged from the wall and ended up on the floor. People ask how I didn't get hurt and I don't know. I suppose I was somewhat lucky.
A snowstorm was predicted to go through that night and I thought perfect - then we should be fine to drive home. So we ordered pizza and watched the Olympic ice-skating championships, while my daughter tried to get me engaged in playing Minecraft with her, while I tried to stay awake.
The next morning, I thought the cat was poking me until I realized it was my daughter, informing me that I had slept in! It was 7:20. That is actually sleeping in for me. Usually my leg spasms have me up by 5:30 or 6.
"Is it snowing?" I asked. "No," she replied. Hmmm... 10 minutes later, she informed me that it was snowing. 10 minutes after that I realized the storm had come late. It was just starting to snow and the wind was blowing so it was hard to see anything outside. This was not good news.
Maybe the storm would blow through quickly, by 11, when we planned to leave. Then the roads would be ok and we would miss the Sunday afternoon traffic. In reality, we should have left then. By 11 there were no good options. The storm was still there and visibility was bad. If we waited we would be with the traffic and in the middle of the storm. So we left.
Looking back, perhaps staying an extra night would have been a better plan! Looking back, there were no trucks on the road which indicates bad weather. And as I looked around me I was surrounded my 4-wheel drive vehicles.
Without weather, it's not a long journey from where we were up to the main tunnel that is the top point at which cars then head down to Denver. We drove slowly. I showed Lori how going slowly was working, how the other car next to us kept getting stuck because they were pushing hard on the accelerator pedal and tires were just spinning. 2.5 hours later, going at most 5 miles per hour, we were 2.5 miles from the tunnel, although we didn't know this because we couldn't see much.
All of a sudden, the 3-lane road became 1 lane and a slip and slide, make your own way, combo of 2 lanes. We were in the slip and slide area. After 2.5 successful slow-moving hours, we were stuck. Nothing worked; the only people getting through appeared to be the 4-wheel drive vehicles; there were lights on the left side of the road and lights and state patrol vehicles on the right side (where we were). And we were stopped. "None of us want to be here." That's what I thought right then.
A patrol car pulled next to us and informed me that there were 2.5 more miles to go and things would only get steeper. "If I were you," he said, "I'd take a tow to the tunnel."
Even though we didn't want to be where we were, we were actually very lucky to just be there right when the patrol car was there, right around all the vehicles that could get us out of this mess. I no longer needed to be afraid. The patrol car blocked me; another department of transportation vehicle came and pushed me to the side of the road, and the tow truck hooked us to it and took us to the top. What an experience to be in the van while being hooked up and towed. It was like being tilted as if going up a roller coaster, to get set, and then put back down and towed, sternly instructed not to touch anything.
We made it home! Going down from the tunnel there was still ice and snow for awhile. But then there was nothing - dry roads. Instead of 3 hours, it took us 5.5 hours to get home. But we made it!
The skiing? Well, the skiing was awesome. It was a sunny day and the snow was a somewhat sticky, powdery mix, which was slow, but good for the first day of skiing. I have trouble going left, and we found something to help correct that. As I sat in the ski office during lunch, the ski program director noted that I always sit leaning left. I had no idea! I wish people would tell me these things that then interfere with skiing. The ski instructor came up with a plan to put a small pad underneath my right side and voila! The left turn was corrected. The only problem is that now the right turn is a bit off. But I can work through that.
So, beginning the ski season was interesting. Every season seems so very different. This one I will never forget because we got home safely, because we just happened to be in the right place at the right time to get help, and for that, I am thankful for all the people who work out in these storms, in miserable conditions, to try to keep our roads safe.
Peace.
Friday, January 3, 2014
Family
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.
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.
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.
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