Training Day Five: Friday 19 June. 9:30–11:30, 2:00–4:00
Last night I fell asleep to a soothing voice intone, “Now we begin our body scan…” I hope all these meditations I don’t manage to stay awake for still help me subconsciously. Burning upper back woke me in the night.
This morning, I wait for the text from Ryan to let me know that my knee sections have been delivered. I am nervous; it feels like such a long build up. Jared has warned me, “It’s a lot of equipment. It’s going to seem heavy.” Ryan has assured me, “You’re going to make so much progress.”
I eat only a banana as I wait for the text. We’d hoped for 8am. I put on the longer brace sleeves I’d been given on Wednesday with my ExoSyms, so I am ready to just add the knee sections when we get there. At 9am, I get the text: they’re here.
At the clinic, my knee sections are sitting on the counter in the room with the long parallel bars. They seem really big.
Before we put them on, I let Ryan know that the additional adjustments he’d made to my right ExoSym the day before for burning in the heel were now causing painful pressure on the top of my foot. He takes my right shoe and relaces it, skipping the very bottom holes and adding a plastic lace guard to distribute the pressure of the laces across my foot. This does help, and we’re ready to go.
The knee sections are quite complicated to attach. Ryan shoves them over/onto the knee cuff of the ExoSyms, carbon fiber scraping against carbon fiber. Then he tries to show me how to shove the two openings in the lower piece of the knee sections over the waiting rivets on the knee cuff just right, like latching Oshkosh overalls. “There, that’s what I made you,” he says, and we’re all relieved that everything seems to be in working order now. I fasten two Velcro straps around the back of both thighs and Ryan hooks two hamstring assist bands around the metal pieces at the back of the knee cuff.
Up I stand, between the bars. My right foot feels indescribably weird. My toes are pointing out to the right, torquing me into an alignment I’d never felt before. It’s very uncomfortable, with pressure in all sorts of places, like my foot is on crooked, like I’d been casted for a broken bone incorrectly and this wonky cast needs to be cut off pronto. Instead, I’m asked to walk in it. My brain is scrambling and I ask why my toes are pointing out, voice a bit high. Ryan tells me everything looks good; it’s just that I’m more typically aligned. And that I can move my foot so it’s not pointing outward, shift from the hip. Of course, right, I can move my own foot. With effort, I get my toes pointing in a more forwardly direction. Simultaneously, there’s all sorts of sensations going on around my thighs. Rolling movements? But firm, especially around the back. Ryan had told me that the knee sections would give me more proprioception (body awareness) and stability. I hadn’t really understood how. I wasn’t prepared for everything to feel so weird. As I step, the cuff across the front of the thigh and the straps around the back put pressure into my leg at different points–constant feedback.
It takes a much shorter time than I was expecting for my brain to stop interpreting my right leg as #$@&!. My left side feels pretty good! Though it still doesn’t do as well as the right because the left is my weaker side. I wish my right side could feel as happy as my left. I quickly adjust to whatever is happening to my thighs and realize–I like it. It’s like a firm hug and a massage at once. I’m relieved that the added weight doesn’t feel “too heavy,” and I think in part it’s because I have two devices instead of one. With one, I’m sure the Exo side must feel weighed down in comparison.
Jared comes in for training and Ryan tells him before leaving that I walked with no hands yesterday.
“Can I see your new skills?” Jared asks.
I walk without using the bars for a few steps to show him my progress.
His response? “Are you using your squish?”
“Probably not,” I admit.
“I didn’t think so.”
So much for my new “skills.” Learning to walk in a new way is like learning to write in cursive after painstakingly getting the hang of printing. Smoothly connecting all the letters–all that processing needs to happen so quickly in order to make the word you want.
I walk up and down between the bars, and Jared makes me switch to walking backward pretty quickly, to work more on the hamstrings. Then he brings in a large red gymnastics-type block for me to push out into the gym, on my toes, hips forward. Down and back the length of the gym. He tells me we’re going to practice stairs, which means I need to walk over there. After a few steps, he gives me one pole. It’s his way of “tricking” me into trying more no-hands walking, sneaking it up on my subconscious rather than telling me: “Try to walk to the stairs without poles.”
The best moment I have all week comes next. This is the moment I really know these devices are doing something for me, even now when I’m not strong enough to use them properly. I’m standing in the gym–freestanding, nothing near me to grab–and my muscles tighten up as they do, knees bend. I am now off balance and pitch forward toward the floor. I think, here it finally comes, my first fall. This will be a great first fall because I’ll just tip right over, nice and easy. But I don’t. I hang there, more bent at the waist than I ever remember being without falling.
“You okay?” Jared asks mildly from somewhere above me.
“Yeah?” I say, disbelieving even as I successfully straighten up. What just happened? How am I still up here and not down there? How are they doing that?
We work at a set of practice stairs. One is a shallow set and across the landing and down the other side is a standard set. I muscle my way up, using the railing on one side and the wall on the other. There is a technique to learn for going down, though. With no ankle flexion, I have to position one foot with the ball and toes off the step, and step down with the other, ideally landing with that foot halfway off the next step. Meanwhile, the foot that was halfway off the first step has tilted off of it and is swinging through, ready to land correctly on the next one down. I absolutely understand the logic and can picture it in my mind. But. Short legs and spasticity do not lend themselves to stairs in the first place. For me, it’s more like plonk the foot down, position it correctly after two or three tries, plonk the other foot down…
Up again. Then down the standard set. Then up, and down the shallow set backward. Then up, and down backward. “Look up,” Jared prompts. Step. “Look up.” Step. “Look up.” Up and down again and again. With rests on a giant tire a couple times. He doesn’t tell me “Do ten,” but instead tells me, “Let’s take a break,” based on my body language. He’s figuring out how to adjust his approach just in time for our work together to be over. Five sessions isn’t a lot.
We go back to the weight lifting frame for more balance work. On the balance board, I cannot take both hands away from the bars. Jared asks if we’ve done the belt yet. I’m delighted to get another chance to put on the belt with the pole down my back. Still cannot take my hands away. I suggest getting off the balance board and just standing on the small block it’s on. Jared assents, but it’s a no go. “Look up,” Jared says. “Squeeze your buns.” He reminds me to squeeze my buns every time I feel unstable and start to crouch and collapse inward. It does help me straighten up and get my center of gravity back where it’s supposed to be. Again he wonders if it’s fear, though hastens to acknowledge that fear is real. I know there’s a psychological element at play. I tell him that I can stand in my ExoSyms and raise my arms above my head when I’m alone in the hotel room. He turns his back so no one is watching me, but of course it’s not the same, and I still can’t let go of the bars with both hands. Below you’ll find a series of clips, from the first near-panic moments of walking through the balance practice.
I push the red block up and down the gym one more time. Jared says it was nice working with me and thanks me for putting in good effort (or something like that). He realizes after a few days of working with me that I “do a lot of my work on the inside.” Probably in reference to my unexpected crying moment.
My last training session is over. We didn’t do as much today, my only day with knee sections.
Back at the hotel, we eat lunch. I don’t get a good nap, but rest with ice on my back. As I get ready to go back to the clinic for another solo session, I time myself. It takes a full ten minutes to put all four pieces and shoes on.
At the clinic, I am in the same room as the day before, with the short parallel bars. I ask for a mirror, and Ryan rolls one in. The mirror will help me know whether or not I’m successfully combating my hip drop. Perceptions are definitely faulty. One day this week when Jared was trying to get me to maintain level hips while on the balance board, I did my squish, held myself as level as I could, and asked, “Am I level?” Jared shook his head, came over, and moved my hips into a level position. Oh. I was way off. What’s more, I couldn’t re-create the proper posture on my next try, and Jared ended up bringing over a mirror.
Today, Ryan tells me to do some laps with two, one, and no hands. Some “fast,” and some slower, with concentration. He tells me to put all my weight on the standing leg and swing the other through, especially on the left. At least, that’s what I get out of his directions as he speeds away to meet other patients.
I tuck my shirt into my shorts, so I can see my hips better, and see when I tighten my core. Up and back six steps. Fast, slow. Different hands. Try to swing my leg forward without cheating by swinging out to the side and around. I explore balance. Focus on using my core properly to help bring the leg through, try to keep my squish, and squish in time with my steps. As I practice, I think that maybe Jared was having me do a lot that was simply too advanced, or that I wasn’t able to synthesize and apply fast enough. I start to understand better today what he wanted from me two days ago. Five days, ten hours really, is such a small amount of time to learn so much. I need much more repetition and reteaching of key concepts.
I continue to work, getting to know my devices, which after all, I’ve only had in their complete form for a handful of hours.
Then it’s time to take them off. Ryan shines them up for me. Gives me a stack of spare heel lifts for my shoes and several sets of hamstring assist bands. He shows me how to screw them into my devices in case one breaks. Ryan also removes the inner hamstring assist bands, leaving the outer ones. He will let me know when he thinks I’m strong enough to use both bands, based on the videos I send.
We go to his office for a bit of a debrief. I tell him about the lingering pain in the right foot. He says he can take the arch back down a little to relieve the pressure on top, but he thinks it will settle over time. I can always send it for adjustment if it’s needed. I decide to go with Ryan’s assessment and not make any further adjustments right now.
Ryan tells me this process will take patience and commitment, which I have shown a lot of this week. He reiterates that this is a partnership, and that I need to make sure my physical therapist gets in touch with him.
After I put my forest green pin in the world map, training week is over. Whew. Now I’m just supposed to wear them every day for the rest of my life. No big.
I have a big balance check before I even make it out of the lobby. Still so far to go to be comfortable just with walking.
Still, I made it through, and I do know it’s going to get so much better. Right now, I literally can’t imagine what it will feel like to walk easily, with a steady gait without poles. But I believe it will happen one day.
Anyone who knows me well would agree that I am cautious, do not take any physical risks, am rather skeptical in general, and pass judgments and make assumptions that are incorrect on a regular basis. These traits do not amount to the best recipe for personal growth. So, good job, me. Good job for trying hard things.
What Happened to Your Legs? 