I met Alex during my stint at Kennedy Krieger inpatient rehab. Alex had gone in for surgery to fix a chest wall abnormality called Pectus Excavatum, which can affect breathing. He woke up from the surgery unable to move his legs. 4 weeks after the surgery through sheer will power he moved a toe.
Deciding he was going to walk again Alex worked every day, willing his legs to work again. He continued to get stronger every day, with his therapists doing less and less work. He moved from walking in the parallel bars, to walking with a walker, to crutches, to walking with canes, eventually walking independently.
I met Alex near the end of his stay, at the point where he was still using crutches. I found his progress amazing, since it hinted at the progress I might make myself one day. We compared similar hospital stories and experiences, swapping stories with the other older patients. He left inpatient fairly soon after I got there, showing the promise of escape in my future.
I ended up meeting Alex again when I switched to outpatient. He had just switched from crutches to canes. He offered me his old crutches since he would no longer be needing them. These are the same crutches I still use when I go to the pool (though they have been beaten up a little bit since then). I'm grateful for the gift which let me progress to the next level of mobility. Thank you Alex.
Incidentally Alex was the one who inspired me to get flame covered canes. His pair of flame canes made him look like a comet compared to my snail like pace.
So here's another story that there is hope after a traumatic event. As when I first met him, Alex's story is a sign of things that could happen to me as well. I remind myself that everyone's journey is different but that doesn't mean we can't look to where others have traveled.
Earlier this month my amazing and lovely therapist Brooke Bamford posted a brief post on the Kennedy Krieger Blog about The Turtle Walks, where she waxes on with the glow of a proud therapist. I say this without sarcasm, for a therapist who is proud her patients is more likely to do an amazing job with them. I won't deny I've worked my butt off to get here but I will give my therapists credit for most of it. Second only to you, Mom. (I believe in giving credit where it is due)
It's been weird how many people have connected with me through The Turtle Walks. Initially this blog was meant to be just a means of communicating with my friends and family. I started writing because I got tired of people blowing up my telephone, asking me the same questions over and over (How are you doing?, what did you do in PT? what muscles are you moving now?). But now it's gone beyond that. I've seen myself change, seen changes in technology, and connected with strangers on multiple continents. I've now moved onto facebook, where you can 'like' The Turtle Walks to get immediate updates.
I cannot express how grateful I am to the support network I have. The unadorned truth is that my friends and family carried me through this last year and a half. I'm okay with the fact that a blog about a gimp is not likely to become an Internet sensation and I can tell you without a doubt that I feel supported and I feel loved.
As of the beginning of this week, I will no longer be bringing my wheelchair into town for any reason. I will now use only my leg brace in town, including when I go to swim at the YMCA.
I look back on the day that I got my own wheelchair. It was an exciting day, one filled with hope and the promise of exciting possibilities. I zoomed around the hallways, weaving in and out of nurses, doctors, aids, patients and family members at top speed. I started doing wheelies every spare second, though we weren't supposed to. I didn't have my legs back but I had my mobility again. It was like getting the keys to a new car, finally able to leave under my own power.
I think how far this chair has gotten me. The paint is scratched and the parts are slightly worn in, a testament to the fact that I wasn't content to sit at home. It got me through the summer months of rehab at Kennedy Krieger, crossing the country to Colorado, crossing back to North Carolina, flying to Minnesota. I've taken it to pools, museums, zoos, aquariums, to fine dining, to fast food, through memories of euphoria, and memories of pain that are forever tattooed across the vision of the past. I've wheeled through tiled hallways, city streets, grassy fields, and forest paths. Through it all, it has carried me farther than I ever imagined.
I now need to leave it behind, for good. I've been using it for shorter and shorter bursts, using it mainly on either side of sleeping and for going to the pool. My body is now at the point where I can walk around without the help of the chair almost the entire day if I'm wearing my leg brace. I'm mostly using the wheelchair out of habit, though a part of me doesn't want to leave it just yet. My chair has become the security blanket that I've been clinging to with childish abandon.
I decided at the start of this week that I was going to leave it behind when I went into town. The reason this was a big step: I'd never before used just the leg brace when I've gone into the YMCA pool. It's physically demanding and require some extra planning:
1) I normally had my backpack full of personal items, bathroom supplies, wallet, and my phone; my backpack stayed on the back of my chair, wearing a smooth divot into my backrest. I now have to carry these in, along with my swimsuit, towel, and water shoes. You try carrying all that on your back without tipping over. Yeesh!
2) My leg brace can't get wet. I have to leave it locked up in the locker room, which mean I don't have it to use as I walk out. I leave the locker room with no brace and my crutches. I'm able to kick out my leg effectively and move it in time so it doesn't fall behind though the muscles surrounding the knee are not strong enough to hold my weight. While I do have to worry about the crutches slipping on the wet floor I still have one good leg to lean on through the process.
3) Getting in and out of the pool. This is actually the easiest step in the process. There is a pole near the deep end which I can use to lean on while I set down my crutches. Then I simply jump in! (no cannon balls yet) When I get out I use the pole to help me stand and then I pick up my crutches.
4) This is all a lot of work. I try and get the most out of my time when I swim so I'm usually pretty tired by the end. With my chair, when I was finished I was able to slouch and wheel myself to the showers. Now I have more walking ahead of me before I can look forward to going home. This is a positive in the long term, though when I'm tired I tend to care less and less about the long term.
Despite these concerns I've done well. The most exciting part of the process was the people, most of whom already knew me as the guy in the wheelchair. Few knew I could walk at all, since I'd never walked in before. Even those who knew I was doing some walking were unaware that I walking as well as I am. I got lots of encouragement, praise, and support. The one comment that never fails to crack me up is "I had no idea you were so TALL!"*
All in all the loss of my security blanket went pretty well. It was tiring but I know it will be worth it. It seems that I'm going through the steps of childhood all over again: learn to sit up, learn to roll over, learn to crawl, learn to walk, get rid of security blanket... and I thought going through this the first time was hard enough.
*This is actually a fairly common observation. I'm 6'1" but in my wheelchair I was under 5 feet. I've lost track of the number of times I've heard this.
Both braces are now back and working! I was secretly relieved that I got a few days off and would be able to relax. But the time I was without my walking legs really clued me in to just how much the braces are helping.
During the early months of this year I had fairly severe back pain in my lower back. This was centered above my back right hip, in large part due to overuse of my right leg. I also used my wheelchair far more often than I should have, using it at every opportunity. I didn't trust my left leg even in the brace, in large part due to the habit of the brace buckling unexpectedly. Thanks to some scolding from therapists and some long distance walking I slowly began to rely more and more on the braced leg. I still didn't trust it but I felt more secure in my use. I hadn't noticed but as I slowly have been switching to being double legged again my back pain was slowly fading into the background. It's at the point where I don't notice it at all unless I'm actively thinking about it.
This realization came to me as I was stuck in the wheelchair for these few days. As I sat there for longer and longer my back was getting stiffer and stiffer. It wasn't to the point yet where it was more any than a little uncomfortable but I could see that that was the direction I was heading if I stayed in the chair too much longer. Fortunately about the time I realized this the wire brace was finally fixed. Now the electric brace is finally fixed as well, taking longer since it had to be shipped to the factory in Minnesota.
It boils down to this:
When I walk, I'm more mobile, have less pain, and feel generally better about myself. When I'm in my wheelchair I'm shorter, have to take more pain medication, and receive pitying looks instead of just curious glances.
This realization doesn't make things easier but it shows me that I am indeed on the right path. I just have to keep putting one foot in front of the other I guess.
BOTH BRACES ARE BROKE! The electronic one is broken and now the wire brace is broke too. Great, just great. I haven't been wheelchair only in a while. I always have some type of brace around since I started working with them last year. Truth be told it is kind of nice to get a breather. So I'm just thinking I'm taking a vacation from the brace. Everyone else gets a holiday weekend, so why shouldn't I? The wire brace we should be able to get fixed on Wednesday and have the electronic one sent off then too.
I've been looking back over my old posts a lot lately. I admit I don't recognize that person anymore, the one who was writing those blog entries. For one thing I don't feel remotely like that 80 year old man anymore. I may be 55 but I'm definitely not 80 any more. I must admit my dreams haven't been nearly as vivid lately.
I've changed. I had already begun the process, changing from who I was to who I am now. I know we all change but it's weird to look back and not recognize yourself. Maybe who you were but not who you are now. In general I'm stronger than I used to be. I don't have nearly as much pain, I'm more active. Before, even at my best I was limited to an hour or two. Now I'm out for the whole day, from 10 in the morning to 4 at night. I couldn't keep up that pace all week but it's good. So at least I have my health now.
And now it's the forth of July! Happy forth everybody. Don't anybody loose fingers out there! Watch yourselves with those giant illegal fireworks.
Sorry I haven't written in a while. I just started two summer courses, Intro To Computer Programing and Psychology. So for a while I won't be blogging as often I used to.
I went to a gay pride festival in my wheelchair. Or should I say my rainbow wheelchair. I had lots of fun, though some people made me feel vaguely uncomfortable. They kept coming up to me and saying things like "You know you're real brave, you know that," or my favorite "you're such an inspiration!" Random people kept coming and giving me hugs. I should have expected it. But I've become so accustomed to people knowing who I am and who are used to me. Meeting this many strangers made me feel strangely separate. I was a weirdo way before I was injured, so it kind of fits. I hung with an awesome group who were weird in vaguely the same ways as I am. I met some people from all over the state and I won't be forgetting them any time soon!
I wheeled around on the moderately hilly grass, people occasionally stopping what they were doing to help me wheel through. I'm just not one of those people who will refuse help when I could actually use it. For anyone who doesn't know, wheeling on grass is really annoying! As the day went I took my crutches and grabbed my swim suit and hopped over to the pool. People tried extremely hard not to stare. *stare* *look away* *stare* *look away*.
Finally in the evening we went to the beach. Here I put on my old leg brace and walked on the beach, where the dance party was. By that time I didn't do any dancing but hung around with my cluster of friends on their beach towel. Walking on sand was an intense experience. My canes sunk into the sand if I leaned on them very much, so I ended up walking with almost no support whatsoever. Needless to say at the end of this day I was dead tired. I slept well that night.
Outer Banks Beach Frence by Randy Steele
I managed to get my AFO (ankle foot orthosis) which I got casted for the other day. It's pretty boring, just molded plastic and Velcro. We got the most bare bones version we could so that we could take it in the pool, to practice walking underwater.
The AFO is extremely useful because it stabilizes the ankle, which otherwise has a tendency to roll out from under me as I walk. The difficulty is that it also pushes the knee forward due to muscle tightness in the hamstring. This forces me to use my quad and hold the knee tight, which I need to be doing anyway.
And finally my leg brace is on the fritz again! The wires are beginning to pop out of the case, with the possibility that my cats got to the wires. Not majorly, just enough that when you tilt the wire to the side it shuts off power to the brace. As I was leaving physical therapy it went on and off three times in less than 50 ft. All the orthotists had left for the day. So it's broken for a while. Most likely they will send it off to Minnesota to get repaired. It may be a while before I get it back but I guess we will see.
