Challenge Accepted…Learning to Trust My Body Again

At the end of July, I signed up for the Ring of Kerry virtual challenge, because I’m crazy. My very existence now is a challenge, so why not add a little something extra?

The virtual Ring of Kerry challenge is 124 miles (200km) either walking, running, or cycling. I can’t walk more than a mile or so now. It takes me hours to even do that so I decided that if I wanted to log 124 miles before the deadline (in November) then I better get my disabled ass on a bike.

Funny how we take basic human activities for granted, like walking. Or the old cliche, “It’s like riding a bike.”

Riding a bike is so much easier with an intact brain stem and cervical spinal cord.

For almost a month, I hurt myself every damn day. I often fell over with the bike. Sometimes I tried to stop but between a weak leg and crap balance, I got tangled up in the bike and fell. Or I’d slam a leg into the frame of the bike. Maybe rip some skin off with a pedal when I couldn’t get back on the seat fast enough. Getting on and off the bike was a life and limb threatening manoeuvre.

The first week of the challenge, I wobbled a lot. I probably looked like I was biking under the influence. Bringing the bike to a stop, then dismounting and walking across a street was terrifying and almost impossible. I lurched, and sometimes I had disconnections between my brain and body.

I couldn’t keep my balance or get my legs to do what I wanted.

That first week, at the end of my bike ride I couldn’t get off the bike unless I laid it right down on the ground. I couldn’t lift my feet high enough to dismount. Some days I couldn’t even lift my foot five inches to step over the bike once I laid it down so I got really creative a few times which further contributed to my neighbours thinking I’m nuts. Once I managed to untangle myself from the bike, I could barely walk back into the house.

I knew I was going to struggle during the challenge, and I did. I can’t trust my body to do the things I ask of it. It’s not a lack of determination. It’s neurological deficits. When I can’t get a command from my brain to my body in a timely fashion, things go horribly awry. It’s not a mindset thing.

Every day, I came home limping, bleeding, missing soft-tissue or forming bruises. Sometimes all the above.

I came home sobbing once when a nasty young woman screamed vile names at me because I couldn’t cross the street fast enough to suit her. She was in a big rush to get her young children somewhere, I guess. Sorry my disability has such a negative, inconvenient effect on your life, lady.

I think I’d rather be disabled like me than a garbage human like her, but I digress…

How miraculous is the human brain?

My second week, I was more coordinated at stopping the bike without falling. Near the end of the second week, it was much easier to get off the bike at the end of the ride, even though I was fatigued.

The third week, I managed to do 11 miles in one session. I fell off the bike at one point while trying to stop, but bad things happen when I get tired so it could have been worse. Once I’d logged about 50 miles into the challenge over many days, I started to feel a little more confident that I could trust myself to stay upright on the bike.

By the end of the third week, I could stop the bike, dismount at a crosswalk, and walk across the street without my brain losing control over my legs. Paralysis sucks, no matter how brief it might be.

Zero out of five, do not recommend.

I couldn’t cross the street quickly, but my brain was able to make the switch from ‘we’re riding a bike’ to ‘and we’re walking’ pretty quickly. At the beginning, it took my poor brain a long time to make those transitions.

It’s a little funny to me how often my brain now goes, “What in the hell is happening right now?” and it simply can’t deal when I try to coordinate many movements at once. It happens a fair bit during physiotherapy. Like, maintaining my balance sitting on a fitness ball while lifting one leg at a time then passing a ball around my body nearly made my brain explode. Initially I couldn’t do it at all but then after twenty minutes my brain figured it out, at least to the point that I stopped falling off the ball so often. It was like some switch went on, and it was really cool to experience.

I used to be able to have eighteen browser tabs open in my head at a time and be just fine. Back in October, I lost that ability. I used to be able to do complicated dance routines but now it takes most of my mental energy just to walk downstairs from my bedroom to the kitchen.

Coordinating voluntary movement is a huge challenge for me now.

You don’t realize how complicated walking is until your brain can’t coordinate all the steps that have to take place in a timely fashion.

Just the ‘simple’ act of walking requires holding yourself upright, shifting weight from one side to the other while you lift one foot to step forward, coordinating flexion and extension of hips, knees, ankles, and feet. It’s actually hard to maintain balance while shifting your weight between each foot, but not for most people. Most people can do it naturally, without any conscious thought whatsoever.

But to take a step, you have to place your heel down first then roll through your foot while you dorsiflex your other foot and lift it at just the right moment in preparation of the next step, while maintaining your balance. You engage a lot of muscles and use a lot of brain structures to do this. It’s normally quick and automatic, but not for me. I often can’t dorsiflex my left foot, so I have foot drop. I struggle to maintain my balance when I shift my weight from side to side to walk. I’ll often stagger off to one side, then the other. Sometimes my legs don’t bend when they should.

You know how you can turn your head to look at things while you’re walking but you’ll keep walking in a straight line?

I can’t do that. I’ll fall in the direction I’m looking, which at one point was extremely dangerous on my bike when I turned my head to glance at something and it sent me careening into traffic.

It’s been hard the last several months, not being able to trust my ability to walk or stay standing. I couldn’t trust that I could keep my balance or hold onto things with my left hand. For a few months, I was like a turtle. If I was on my back, I struggled to get up. Just over a month ago, I didn’t trust myself to ride my bike either. I know what I want my body to do, and I know what it needs to do to accomplish a physical task, but a lot of times my body just doesn’t listen. The signal from my brain doesn’t get past my brain stem to be relayed to my body. Some days it really pisses me off.

I used to be high-speed internet, now I’m dial-up.

But it’s amazing how much easier riding a bike became over the course of 33 days. It wasn’t like my brain suddenly remembered, it always remembered. It was getting the remembered information from my brain to the rest of my body and it seemed like after a month of practice, my brain figured out a way to do that more efficiently.

Did I form new neural pathways around the damaged areas to get the signals down my spinal cord? Did the existing pathways for bike riding just get better and more efficient with practice? I’m not totally sure which answer is right. Maybe it’s a combination of both, or something else completely unrelated.

I completed the challenge a few days ago, in 33 days. Riding my bike never got easy, but it definitely got easier and less hazardous. I hurt myself less often, and that’s a pretty important metric. I’m really proud of myself, but I’m also really happy it’s finished.

I think trying to roller-blade before winter comes might be really good for my brain but I don’t know if I’d survive the first few weeks it would take to start getting better at it.