I meant to write about Stroke Camp first and this experience at Stroke Camp second, but you’re getting it out of order. It took me over a week to recover from camp and just as I was feeling myself again, we all got sick. So here we are weeks out without any posts. Maybe I’ll write my next one on how long it takes to bounce back from illnesses or vacations…
Ever since my stroke, I have lived in a continual carnival.
Because my stroke is cerebellar, I am constantly playing games of coordination, speed, dexterity to just get through normal activities. Reaching for something and picking it up is as challenging as one of those arcade games with the arm that you use to pick up a stuffed animal and drop it down a chute.
As I complete each task, I walk to the next along rigged paths that sway, rock, and jolt unexpectedly. The only place to sit down to rest is on the tilt-a-whirl. To eat lunch, I sit at a table that jiggles constantly. As my food bounces around, I have to reach out to catch each french fry…the fries jiggle around in the basket that is jiggling around its area on the table as my arm is being jiggled by the bouncing and shifting of my seat.
One of the rides, the “Bike Ride,” involves riding on something like the spinning teacups (only appropriately themed) and then being given a bike. I am put on a path that is constantly moving; it wiggles and swoops, suddenly jolts left or right or up or down. It is positioned in a tunnel that is constantly rotating a few days clockwise or counterclockwise in little jerks. Now ride! At the end of an exhausting day at the carnival, instead of going home to my quiet, still bed, I lie down on the tilt-a-whirl and try to sleep.
In addition to the above, my brain is constantly “pinging” my right arm to try to figure out where it is in space. My brain seems generally less bothered by right leg and let’s it just exist in a sort of fuzzy space.
When I am doing a particularly enjoyable or interesting activity, I forget how dizzy I feel…but it is still a huge effort. At Stoke Camp, I had the opportunity to try something both enjoyable and EASY. I rode a recumbent trike during a demo from Angle Tech. Kelvin, from Angle Tech, had a black metal box like something out of a James Bond movie. He opened it and pulled out all sorts of nifty pieces of equipment that allowed people to velcro their paralyzed hand to the handlebar, brace a paralyzed calf, or shorten the distance of pedaling for someone with limited range of motion. I watched as other stroke survivors limped over to take their turn, set aside canes, were helped out of wheelchairs, hooked paralyzed limbs into various nifty gadgets, and then took off, whizzing, with huge grins on their faces. I wanted so badly to get my turn that I was almost in tears (not usual for me). I knew I had already been up way too long and needed to lie down really soon and my daughter was overdue for a nap. I was dizzy and queasy and couldn’t figure out any logical order to the milling group. I started asking for help. A volunteer and a caregiver helped me on to one of the recumbent trikes that was adjusted only a little too tall for me. The guy adjusting the bikes was busy taking someone else for a spin.
I started pedaling and realized something amazing: this was easy. Everything I do, all day long, is a huge difficult effort. But riding the trike was a heady combination of being a fun, interesting distraction from the spinny feeling and simultaneously being easy. I had reached a point of fatigue that I know from experience has me poking myself in the face with a fork trying to eat. And here I was, nearly effortlessly moving through space. My right arm and leg guided by my left arm and leg, and my wheels solidly attached to the ground with no danger of tipping. (Upright trikes are very unstable, by the way, and not advisable for stroke survivors!) The kind woman helping me was trying to get me to stop and listen to directions but all I wanted was to keep going and feel that incredible sensation again. I felt normal. I felt like me.
I even tried going off the edge of the road to see what would happen. Nothing. It was fabulous.
Biking is extra important in our family because we bike everywhere, not just for pleasure or exercise, but the grocery store, Costco, the hardware store, church. Not being able to bike anywhere has been a huge change in my life. My family can still whizz around. Because of our handy location near the bike trails, we can actually get to Costco or Target (2.5 miles away) in the same amount of time, and a lot less trouble, by bike than in a car. But even now that I’m back on my bike, I can only go a few effortful blocks. If it’s anything like walking, I will gradually increase my distance. Even in the weeks since Camp, I’ve made huge strides towards “normal” biking (I weave less, for one!)
After my glorious loop on the recumbent trike, I gimped slowly, clumsily back to my room with hot eyes and tears welling up. I was back in the continual amusement park ride. But I’d had a taste of normal.
Here’s a video of the trike I tried. As far as I can tell, almost any stroke survivor can ride one of these. I wasn’t exaggerating when I said people were being helped out of wheelchairs to take off on three wheels. This could be us: