After my last post I received some mild scolding for lying out and not doing a whole lot. But nothing compares to when I admitted to two of my therapists I had been a little lazy this past week.
My first therapist Courtney is my aquatherapist. We work at the YMCA pool exercising my legs, arms, core, etc. On a normal day she works me hard enough that I collapse into a small puddle when I'm done.
It's my own fault for telling her but I try and maintain a policy of honesty with my therapists. Her response was to make we swim endurance laps, kinda like wind sprints in the water. She had me swim a lap, wait a minute, swim a lap, wait 30 seconds, swim a lap, wait 15 seconds... you get the idea. She did this with the butterfly, then made me do it with just my arms with a piece of foam between my legs so I didn't cheat. Then she had me use just my legs using a kick board. Then all together. Broken up with underwater jogging, crunches and a whole lot of evil. Needless to say the usual puddle I melt into had turned straight from liquid to vapor. (take that metaphor how you like)
On Friday, apparently not learning from my mistake, I told my therapist I had a pretty easy week. We never left the workout mat, working entirely on core and abdominal exercises. What I normally do is bridges:
They are a hard exercise that work all your core muscles. I've been doing those for months in various forms. Now to make them even more work I wasn't even allowed to have my feet on solid ground. She put an exercise ball under my feet to turn it into this:
I know I deserved it but sheesh! During the workout she warned me "you will be sore tomorrow so prepare to hurt." ...and I did! So I got my comeuppance in the end for my week off. Oh well the summer is almost over and I ended it with a bang.
Speaking of a bang here is something for those who have kept with me this whole time: my first real steps!
Keeping busy is hard in between semesters. I'm done with my summer classes and waiting for the fall semester to start. Now normally I wouldn't complain about having some down time but this is more time than I'm used to having. My folk's "we will find something for you to do if you're bored" always has ominous undertones so it never sounds very appealing. So here I am, unsupervised and bored. I find myself lying down and lying on the couch. I'm fighting against it but my natural slacker instincts are playing against me.
My friends have helped me out by getting up and doing things like walking on nature paths and walking down town. I'm very grateful but I lack the something that helps you push yourself forward. I've always had the philosophy:
"If a therapist/friend/family member tells me to do some form of exercise or workout, I do it and give 100%."
My therapists always tell me how nice it is to have a patient willing to do or at least try everything and give 100%. Simply put I've learned that lo and behold my therapists really do know what they're talking about.
So I'm improving but I still lack that drive to push myself without someone intervening, which I will need eventually. How do people do this? I don't have the answer to that. Hopefully I figure it out before I have to this on my own.
As many of you know I have been experimenting with different forms of biking. I have used prepackaged electrical stim bikes, stationary recumbent bikes, handbikes...
My sister and I biking during her trip out to see me.
Stopping to pet an the neighbor's dog, who was adorable.
The view from a handbike.
To add another to the mix I am now using a stationary upright bike, the kind they use for spin classes. It is a little tricky getting on, since I have to hop, but once I'm on it's smooth sailing. I've been doing this for a little over a month and feel I'm really starting to get the hang of it.
Me on the spin bike.
My left foot stays attached using a pair of bike shoes with special cleats on the sole of the shoe. This is the type of shoe that lets professional bikers stay clicked into their tiny pedals.
I have good control over the left leg now, minus the ankle. The shoes keep my foot from going anywhere which allows my leg to use the bike as I normally would. This hints at a similar bike in the future, though not anytime soon.
My mom playing with the video function on the camera.
The bike is a vast improvement over the recumbent bikes. Though they offer more back support, the seated position is uncomfortable and not ideal. By having my back upright I can stay vertical and work on balance, keeping my legs and hips happier in the process.
The sign hanging on the wall, most likely from the spin classes. Yikes!
Puppy Tricks Now I love my mother dearly, since she has pulled me through this whole experience. One of her perhaps less endearing habits is to say to me "hey why don't you just...", asking me to do some feat or another. She has a fond habit of doing this when we are visiting with company, passing acquaintances, when we meet random strangers... My family has taken to calling these my "puppy tricks". These tricks are not particularly difficult or bad for me in any way, but they do leave me with the odd feeling of being a show dog.
Here is me showing off that I can in fact pick up stuff off the floor:
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.
