When I complete my training week at the Hanger Clinic, I have this idea that I need to keep up the momentum. The whole summer is ahead of me, and I have nothing but time. I need to wear my ExoSyms for a minimum of two hours in the morning and two hours in the afternoon, just like at the Clinic, and build up from there.
And then there’s two days of driving, and a trip to the redwoods. Then I’m tired and it’s hot and I haven’t been home in ten days. First, I’ll rest. I’ll practice later. Already, I’ve lost the momentum. Life is not a montage.
Even though it’s nowhere near four hours a day, I do practice walking in my ExoSyms. I can move around the house in them without poles, but I find that I am lurching from furniture to furniture. It’s almost as if I’m wearing roller skates, and I don’t know how to stop. Or steer. It’s hard for my brain to realize I have more balance in these, not less. That I can let go of the table and stand up straight.
After the unexpected calf swelling, it’s taken a full week for my calves to feel like they fit properly into the cuffs, that the cuffs can close without squeezing them.
I’m doing the ab exercises that Jared assigned. And I took a couple furniture sliders from my parents’ house to use under my feet for the exercise he had me doing on rectangles of carpet. Pointing my toes inward and then outward. The hardest thing ever. I am definitely not doing thirty. Maybe I’ll work my way up to that.
On Friday June 26th, a week after leaving Hanger, I send videos to Ryan of me walking with and without poles. The first of many weekly updates. I have so much work ahead of me.
Saturday, it’s cooler, so I take myself outside to practice walking. My husband comes with me in case I face-plant because there’s no way I can get up by myself (yet. I hope it’s yet.) It feels so different, walking outside. Textured sidewalk, uneven blacktop. My left side feels so stiff. I am lopsided. I cannot seem to move in a functional manner. So much work. It’s a full week later, and it doesn’t seem very much improved. I spend about an hour walking up and down outside.
I am finally brave enough to try putting my wrists through the straps on my poles and twisting them tight before gripping the handles. Both Ryan and Jared suggested this method to give my wrists more support. It seems very dangerous in the event of a fall, but it really does help my wrists and make me feel more stable.
Inside, I put on my Leonard Bernstein playlist and practice for another hour. I have about a dozen steps of floor space from the front door to the table. Do a lap. Pause. Wiggle-dance. Lap. Pause. Wiggle-dance.
This week I discover that I can:
Stand up from a chair with no hands. I can do this without ExoSyms sometimes, if the chair is supportive enough and exactly the right height. It usually takes a few tries and is the result of momentum rather than actual ability. It still might take a couple tries with the ExoSyms, but they definitely give me a boost. When I discovered I could do it, I did it over and over and started laughing. Standing up is fun.
Stretch my hamstrings while standing. Usually, I stretch my hamstrings lying on my back with one leg in a yoga strap. I really dislike this position because it’s a strain on the rest of my body to pull my leg up. Sometimes, I do a modified downward dog instead, but it’s not as good a stretch. With my ExoSyms on, I can put my heel on the floor out in front of me and bend toward it, toes up. The brace keeps my ankle flexed, so the stretch is really good. So simple. I can stretch my hamstrings ten times a day now, if I want.
The Sunday following training week was another travel day, from Oregon to California. I did not wear my ExoSyms in the car, for comfort and for the previous laborious/yucky experience of using a public restroom.
My husband and I were reunited, and he was taking me to the redwoods. We checked into our cabin and ate some dinner. Then it was finally time to show him my Exosyms. I had put them on that morning, about twelve hours earlier, for a few minutes of practice before the long car trip to meet up with my husband. I put on my brace sleeves. Then the right device, and–I couldn’t close the knee cuff! I really squeezed my calf, trying to close the top part of the brace. It simply would not close. Not just a little–there was quite a gap. My mind raced: Okay, I’ve been sitting in the car all day. Too much salt. Not enough water. Do calves really bloat/swell this much? My calves are supposed to shrink now, not get bigger!
The left side was a little better, but didn’t close all the way either. I was still able to Velcro the cuffs “closed” and attach the knee sections over them and practice walking for a few minutes. There are bound to be changes and surprises, but it was a little disconcerting for this to happen as soon as I left Hanger. I didn’t want to have to think about sending them back for adjustments already. I resolved not to panic and to just wait it out.
Monday morning we drove on an aptly named scenic parkway to Prairie Creek Redwoods State Park to try to find the accessible trails we’d read about. I did not even contemplate trying to wear my ExoSyms out in the wild, but this would be the first time I used my trekking poles to “trek.”
I tried to do my “squish” (engage my core), keep my poles close to my body, and keep my shoulders back and head up. Because I was holding my poles, I was not holding my husband’s hand as I would have been without them. And by “holding my husband’s hand,” I mean, gripping it, pulling it, nearly dislocating his shoulder. I even tried going up a step or two with just the poles before resorting to the (overgrown) handrail. We went over wooden bridges, and lots and lots of roots, and I did just fine. We saw snails and frogs. The air was cool. The trees were magnificent. And it was good.
After that, it was finally time to return to my life at home. With ExoSyms.
If you are on an ExoSym journey, you will hear a lot of talk about the store Wide Shoes Only in Renton, WA, about thirty-six miles from the Hanger Clinic in Gig Harbor.
We were not about to add seventy-two miles round trip to our drive south to Oregon the day we left Gig Harbor. But the discomfort I was experiencing on the top of my right foot and the continued recommendations from Ryan convinced us we should go.
Of course, the store was closed because of COVID-19, but we left a message and the owner got back to us, scheduling an appointment for us at 10am Saturday.
We packed up and I suited up, and we arrived in Renton early. By then, I needed to use the bathroom, so we drove to a waterfront park and pulled up near a picnic area with public restrooms. I approached the dreaded ramp out of the parking lot with snail-like speed, realizing with alarm that I had practiced stairs during training, but we never got to inclines! Ryan had mentioned something about going sideways, so I tried that. Kind of. Eventually, I made it to the restrooms. Give yourself lots of extra time in the beginning to reach important destinations like these.
Here’s something I’m not wild about. I got into the stall, settled my poles against the wall so they wouldn’t fall over, got the door closed, situated self on toilet, peed, got up. Then I had to handle my poles again. BEFORE WASHING MY HANDS. There’s no way around it until I can walk short distances without poles. I suppose while the pandemic lasts, there won’t be that many public restrooms in my future anyway.
Back at Wide Shoes Only for our appointment, Dominic measured my feet with my ExoSyms on. This man is a shoe professional and he is enthusiastic about it. Ryan is the ExoSym inventor and expert, and Dominic is the ExoSyms-with-shoes expert. No other shoe salesperson will know anything about ExoSyms until you walk in with yours and teach them. So Dominic taught me how to buy–and wear–shoes with ExoSyms.
First, Ryan doesn’t stock half-sizes at the Hanger Clinic, so do not take the shoes that Ryan provides for training week as the right shoes for you. It’s so important to be properly fitted; shoes that fit correctly make a difference in your ExoSym experience. It’s more than a little unfortunate that most of us are probably learning to walk (and work out) in ill-fitting shoes.
Second, the shoe shape (the “last”) is more important than the shoe size. Two different New Balance size 8s will feel different because they are different shapes. Pay attention to the model. Select a shoe with a roll bar for stability.
Huh. Look at that. It says “roll bar” right on the shoe.
Without ExoSyms, I wear an eight, with a narrowish foot. It’s definitely easier to deal with shoes if you have two Exos and don’t have to split sizes. I also have two heel lift inserts that are the same height and will need to be worn with whatever footwear I’m choosing. Ryan put me in a 9 2E (left photo). Dominic put me in an 8.5 4E, the widest (right photo). Shoes that are too long will cause you to walk toes out and swing your leg around (think walking in flippers). I definitely do this, though I’m sure it’s not just because my shoes were a little big. Because of the lace guard that Ryan had given me for pain on the top of my right foot, Dominic showed me how to lace my right shoe completely differently. I had been wearing the 2Es with the laces as loose as they could be with barely enough left to tie. Dominic made sure I tapped my heel on the floor before tying my shoes very tightly at the ankle. A snug fit ensures that the brace doesn’t slip forward and backward in the shoe with each step. I was nervous it would be too tight and uncomfortable, but Dominic knows what he’s doing.
I hate shopping for shoes. If I find a pair I like, I’ve been known to buy two pairs so I don’t have to shop again for a while. I especially find it unbearable when the salesperson tries to help me put the new shoes on, bent over on their rolling seat with me trying to get my foot onto the slanted front. My foot goes stiff when it’s being wrangled into a shoe, so I usually say, “I’ll do it.” With Dominic and the ExoSym, my foot was already encased in the stiffest material imaginable, so it didn’t matter if it flexed involuntarily, and he had no problem getting shoes on and off for me. What a lovely, calm, unawkward experience it was to have the store to ourselves as well.
I left with so much new knowledge and three pairs of shoes. I have New Balances for every day, a “casual” pair, and “dressy” pair. The latter two will probably last me many years because they won’t be worn very frequently.
The takeaway: Do what you can to go to Wide Shoes Only and get fitted properly. It’s probably good to call so you can come in at a quieter time. Take what you learn home with you to your local stores. Leave room in your luggage for new shoes.
After he knows your size and your needs, you can also email Dominic about a shoe that you like the look of, and he will help you find a similar one that will work for you.
I’m so glad we took the extra time and miles to not only support a family business, but also to get me a good shoe education.
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.
Training Day Four: Thursday, 18 June. 9:30–12:30, 2:15–4:00.
I wake up on this morning, having had enough upper-back-tension pain yesterday, in the night, and this morning–and knowing that I won’t have the knee sections–that I just want to get today over with. With these two significant bumps in the road, I’m feeling done. Ready to rest. But I have to do it.
What a doozy.
Ryan texted last night and this morning to check on my back. At the clinic, he asks how I’m doing. I tell him I’m doing better than yesterday. Pain is about a four. He does not like that at all and talks to Jared about having more of a recovery day. I am a little surprised. A four is pretty good. I thought we’d do the regular stuff, with fewer reps. But they seem intent on trying to help the pain go away. This belief that we can successfully improve the pain is a little bewildering to me. Especially here, with all the military connections, I figured it would be a “Work through the pain!” kind of environment.
Jared and I stay in a side room with parallel bars. He asks if I’ve ever had an adjustment. “Like at a chiropractor? No.” I’ve thought about it, but I’ve never been comfortable with that whole relax-on-command-even-though-you-know-I’m-about-to-do-something-sudden-to-your-body idea. He describes what he’s proposing, assures me no one has ever had a bad experience with it, and asks if I’d like to try it. Sure, might as well. I stand between the bars and put my hands behind my head (that is a challenge). Then he stands behind me and somehow reaches around me and up behind my head too. I then lean back into him, give him all my weight, and crack, crack, crack, he lifts me off my feet for a second. And one more time, crack crack. Do I feel much different? No. But it is satisfying to hear all those cracks.
We stand against a wall with the parallel bars in front of us. He wants me to flatten the small of my back against the wall (knees bent), and then push against the bar to flatten my back all the way up, doing a kind of chin tuck at the end to stretch out my neck. It’s really hard to maintain the pelvic tilt and do all the rest. The bar is a little too far away for me to use it effectively. Jared tries attaching big foam bolsters around the bar to make the distance smaller. When that doesn’t work, we spend a lot of time taking this huge long bar out of its three legs, flipping it over so it extends toward me more, and trying to get it back into its three legs at the same height again. All so I could push off of it to do a stretch that I can’t really feel stretching anything. This chin-tuck neck stretch is something I was given years ago. Why am I not just lying down to do this?
He asks about the (semi) daily stretches I already do, several for the upper back and shoulders, and quads, calves, hamstrings, and hips. “Well, those all sound good.” Yes, and even though I’ve improved at them, my body doesn’t feel noticeably better.
We go out into the gym to work on the exercise my physical therapist calls, “T-bar with bobble head.” At home, I lie on a yoga mat, knees bent, arms straight up, Theraband in my hands. I then take my arms out into a T until my hands reach the floor. Shoulder blades are back and down “in my back pocket.” Once I’m in the T, I shake my head. This is to get the neck to relax while still engaging the traps. My shoulders blades are squeezed together, chest out. Does my neck relax? No.
Jared has me try variations of this. I lie down under a parallel bar. He drapes a giant, thick, stretchy band over the bar. It has so much resistance, I can barely move it. He has to add an extra loop so it’s longer.
Trying to work on a foam roller.
I try lying on a foam roller. It supports my spine while my feet stay on the floor. But it rolls too much for me to balance well. (Or, I am unable to balance well, so it rolls too much.) Jared tells me to carefully lower myself to the floor. I scoot/roll/slide gracefully off the roller. “Or that,” Jared says. Hey, that is “carefully lower” in CP Land.
They don’t have a half roller anymore because it got destroyed as an element in obstacle courses. So Jared improvises with a line of spiky half ball things up my spine. I like these. They feel pretty good.
Spiky balls are nice.
“I’m realizing that’s about as high praise as you give,” Jared says.
Well, I mean, ExoSym training week is not a place for tons of great fun. Maybe for other, once-able-bodied people. Not for CPers with spastic diplegia. I do ten reps with the band on the spiky balls.
Jared also shows me a standing piriformis stretch that I really like. See? Really like. You stand on the side you want to stretch and cross the other leg over (or the picture shows behind) the standing leg. Then you just stick your hip out and twist your upper body until you feel a good stretch. I twist and bend over the parallel bar, holding on with both hands.
Twist the upper body and bend at the waist.
This one is not easy. But it is better with a foot against the couch.
So much easier than getting down onto the floor and somehow achieving the right amount of stretch by pulling on my own leg. “It’s a good stretch, and I don’t have to get on the floor,” I say, wondering why no one had shown me this before.
“I’m sensing that’s a big thing with you,” Jared remarks.
At first I’m surprised that it’s not immediately clear that getting down onto and up from the floor is indeed a big thing with me, but then I remind myself that although Jared can see the way I move–and understands the mechanics very well–that doesn’t mean he knows what it feels like to operate this body. I wonder if he’s familiar with Spoon Theory?
It’s time to get to walking again. Jared talks about putting all my weight on the stepping leg and swinging the other one forward–letting the device swing it forward if I’m doing it right. We talk about my poles. Apparently, I haven’t been moving opposite arm and leg together consistently. I’ve been doing Pole. Foot. Pole. Foot. Four separate movements. I know I’ve had the poles pretty far out in front of me to create a wide base for stability, like the four legs of a chair. But this instinct has me leaning forward, straining my arms, and not keeping my weight into the devices. I understand that I need to be standing straighter, with the poles closer to me. It makes sense. That doesn’t mean I can actually do it yet.
Jared shows me options for pole technique. Poles in unison, like a skier. (Nope.) Or alternating hand and foot, like I thought I was doing. He wants me to keep my elbows by my sides and angle the poles back, which puts my wrists in a much better position. “Use them to propel you forward!” I’m not ready to be propelled forward. I completely understand the why behind this method. But I cannot do it. When I angle my poles back, I cannot move. I cannot step forward with the support behind me instead of in front of me.
Jared continues to explain and encourage, and I keep trying, taking deep breaths, emotions running high. I do not have the balance or strength yet to move this way. I put my poles back again. “There! That’s good!” he says, even though my lower body has not moved. I feel one hundred percent truly and actually stuck with the poles in the “correct” position.
Have you ever had the experience of helping a child with math, or something else they struggle with? You’re explaining with enthusiasm, thinking it’s rightfully complex but things are going well, and then the child is crying. Frustrated? Overwhelmed?
I keep trying to breathe through my feeling of “I literally cannot do this.” I try to simply let him know my present reality of “I don’t have the stability to do this right now.” The tears come anyway. I am grateful that my mask and glasses cover my weepy face and my snot.
Jared politely ignores the tears and acknowledges my struggle. He wonders if it’s a mental block/fear.
I say, “Maybe partly, but it also feels legitimately physical.”
He asks if I’d be willing to try it in between the parallel pars, lowered to hip height and positioned closer together. Yes, of course, I’ll try again. Jared leaves me in the safety of the bars and goes to meet another patient. I am able to use the bars to steady myself without letting go of the poles, so I’m more comfortable trying the new technique. But I still really struggle with the mechanics of it all with my muscles so weak.
I’ve only been at it a few minutes when Ryan stops by to check in and release me from this PT session. He asks how I’m doing.
“Physically, better. Emotionally, it’s been a tough day.”
“What about it has been tough?”
“Trying to do stuff I just can’t do yet,” I answer, getting a bit teary again. I always say “yet” or “right now.” I understand I am at the beginning.
Ryan acknowledges that I have emotions to process. “And I’m all for that.” He reminds me again that it’s a process. That I’ll be sending videos to him every week, that he’ll still be there. He wants me to know that I’m doing well, that I’m actually doing better than other CP cases he’s had. He assures me of this. Asks how I feel about it.
When it’s clear that he’s waiting for an answer, I say, “Um. Well, it’s kind of irrelevant because we’re not supposed to compare ourselves to people.” I would have liked it to come out more eloquently than that, but it didn’t.
I wasn’t upset that I was doing badly or that other people had done better. I wasn’t upset that I couldn’t do this thing. I’ve lived my whole life with limitations. I have no problem recognizing my limits, and I had no delusions that they would disappear. It wasn’t that I couldn’t do it–I’ve got that down. I was overwhelmed because all of Jared’s effort, expertise, enthusiasm, and good intentions were focused on me alone, and I was being asked/urged to do these things right now. I needed more practice, more time, to process and to try, without pressure.
Ryan tells me to go eat and rest and that I’m welcome to come back after lunch. “How do you feel?”
“Right now I don’t want to,” I acknowledge. “But I know I need to use this time.”
“You don’t have to.” He really means it. “I’ll leave it up to you.”
Of course I have to come back. We didn’t come all the way here for me to decide to not keep working.
I switch to my regular shoes and Dad and I walk back to the hotel. I am able to use my poles slanted back and alternating on this walk. After lunch I go straight to sleep, still feeling emotional. I wake up with drool on my pillow. Good nap.
In the afternoon, Dad walks me back to the clinic, and I go in alone. I change into my ExoSyms in the lobby and manage to put my backpack away in the room with the cubbies (first door on the right) by myself and make my way across the gym. I have the room with the really short parallel bars, a chair at one end. I practice with the poles between the bars. I’m able to do the slanted thing somewhat, sometimes.
I realize that what I need is to fall. I need to experience a fall. I need to know what it sounds like–carbon fiber clattering together–and what it feels like. It needs to be somewhere I know I can get back up. Not here, on linoleum. In the ExoSyms, even with poles, several times a day, I have the full-body clench, loss-of-balance moment, but so far I’ve caught myself. A fall will happen. The certainty of it looms, couched in suspense and the unknown.
Ryan checks in and advises me to step and squeeze my glute, really focusing on a good heel-toe on the left. I set aside my poles, and I am left alone to practice between the parallel bars. Six steps. Turn. Posture. Relax toes. Again. Trying to do hips forward like Jared said and glutes like Ryan said. Calm and careful. Feeling better.
I just needed time and a safe space to make friends with my devices. Slow, curious. No hurry. No audience or analysis. I stand between the bars, spend time learning how far forward or backward I can shift my weight before my balance goes. Yes, I can let go of the bars and raise my arms when I’m alone.
I practice getting my weight over my hips and keeping it there with each step instead of hinging forward. Squeeze each glute. Put all the weight into one foot, and let the other swing through, heel-toe. Forge new neural pathways. Walking feels different when I successfully use these techniques. Not so much like cement ski boots. Good different. Better.
I walk up and back for about an hour and a half, taking pauses in the chair. I feel like I can start experimenting with taking one hand off the bar. My left side locks up and I can’t swing my right leg through. But a few times I get it. Two steps with just one hand hovering over the bar before I lose it.
If I move my arms like a power walker, it helps me keep my forward momentum, even though my left leg wants to tense up and halt everything. I have a tiny taste of achieving an actual walking stride. I try again and again. I’m just finishing a full length of the bars with no hands when Ryan checks in.
He is properly excited for me and praises my accomplishment with feedback: “What you did with your arms looked better than with your sticks!”
I do a few more laps with poles to continue to try to coordinate those, already stiffening up and losing my rhythm. Ryan, like Jared, suggests putting my hands through the straps and twisting the straps to give my wrists support. I mention my concerns about falling with my wrists through the straps. “Don’t fall,” he says. If that isn’t perfect able-bodied advice.
I get the right ExoSym adjusted again because the heel still burns. Fortunately, it doesn’t take an hour this time, and then we walk back to the hotel.
Food, ibuprofen, journal, meditation, sleep. Day four complete.
Training Day Three: Wednesday, 17 June. 10:30–12:30, 3:15–4:15.
Today was a day.
The hoped-for, early morning knee sections delivery does not happen, so we go to the clinic for my regular PT session with Jared. I “warm up” in a room with parallel bars, while Jared finishes up with someone else in the gym. Ryan stops in and tells me the knee sections aren’t ready yet, but he hopes they will be in the afternoon.
With Jared, I start with the ab work that we figured out yesterday. Three sets. At the parallel bars, Jared puts a rectangle of cardboard under one foot. It has carpet on the bottom, so it should slide easily on the linoleum. The goal is to slide the rectangle backward without bending my knee. I do not understand how this is possible. My right foot gets it sometimes, but my left foot can’t quite do it. My right glutes/piriformis area cramps up with the effort, and I start to beat on it with the side of my fist. Like I do. Jared disappears and returns with a massage gun. After I say I’m willing to try it, he puts it right where I point and turns it on. It sounds like a jackhammer. It feels like way too much, but it is more effective than my fist.
It wasn’t this exact one, but you get the idea.
Next, Jared gets another carpet, so I have one under each foot. As I grip a parallel bar with both hands, I try to move my toes out and toes in. I can hardly move the carpet, and I feel it in my glutes and inner thigh. “Do thirty,” he says.
Right now, my left knee collapses inward quite a bit. These rotation exercises are to help strengthen the outer hip so that my knees won’t tangle with each other. In the CP world, this is called a “scissor gait.” With the knee sections on, there will be bulky equipment there to exacerbate the issue. Jared warns me that many patients are surprised at how heavy they are, how much equipment it is to get used to, and that people can sometimes feel emotionally weighed down as well. “We call these devices instead of traditional braces because it’s a whole system. The knee sections, the hamstring assists are optional. You might wear just the left until that side is stronger like the right, and then wear both.” He’s trying to prepare me, wants me to know it doesn’t have to be all at once. I appreciate that. And I wonder what hamstring assists are? I’m ready to come back and find out in the afternoon.
The last thing I do with Jared is stepping over “hurdles.” I say “hurdles,” because you will see in the video that the hurdles have been completely flattened. I practice taking bigger/higher steps, supposedly using my abs and doing my squish. I really don’t know how to coordinate hands, feet, abs. Up and back six times, never really getting the hang of it.
I am very good at stepping ON the hurdles, but not quite OVER them.
Ryan takes my ExoSyms to prep them for the knee sections and tells us to come back at 3pm.
At the hotel, we eat lunch and I take a nap. When I wake up at 2:30, the muscles between my shoulder blades are extremely tight. The pain is quite strong, quite bad. I’m used to having neck and shoulder tension, but pain like this, right between the shoulder blades, is new to me. I take some deep breaths and ask my dad how to stretch that area. He shows me how to raise my arms up by my ears, cross my hands, and intertwine my fingers while keeping my head up. When I try it, I just can’t do it. It burns so much. I’m crying now, taking huge, deep breaths not really on purpose. My arms and hands tingle. My heart pounds. I take an ibuprofen while Dads rolls a frozen water bottle over my back. Still gulping air. Feeling shaky, a little ill. It’s time to go back to the clinic, but Dad tells me to lie down so he can do the ice treatment a little longer. We won’t be keeping Ryan waiting; he has plenty to do.
We walk the few blocks back to the clinic. (My mom has the car in Seattle.) I wonder if I’m going to make it. Still taking huge breaths, but my heart rate is down now. After we get there and get on our masks and gloves, the ibuprofen seems to be kicking in. I love how sometimes medicine seems to actually help now. What a concept.
I feel a lot better, though still quite tight, by the time I sit down next to my devices. Ryan says there’s “something weird” going on with them.
Ryan has added a layer of dense foam padding on the inside of the knee cuffs. This is much better, feels firmer holding me up. I had been wondering why the cuffs had so much space between them and my shins. They now also have metal pieces coming out of them in a few places on the outside. I assume for the knee sections to attach to somehow.
But he takes a knee section, puts the top part over my thigh, and just looks at it. Says he’s never experienced anything like this in ten years. A “knee section” is two pieces that connect at a hinged knee. Everything is made in-house at Hanger. But he sends the knee parts to California to get riveted together because he doesn’t have a riveter at the clinic. Whoever riveted my pair has connected the left bottom piece to the top right piece and vice versa. A human error. And there’s nothing Ryan can do about it except overnight them to California to get fixed and have them overnighted back. Which means I will have my complete devices on my last day. One day of training instead of three. Great. It’s not his fault, and he’s very apologetic. It’s frustrating, but we can’t do anything about it.
I tell Ryan about my muscle tension and he puts me on the vibration plate for a couple minutes. He has me practice walking for a bit and gives me some stretches for my back. Then I change back into my regular shoes and we walk back to the hotel.
I think Ryan has a more incremental approach than Jared. Ryan: “Go slow. Rest. Get used to them.” Jared: “Do thirty, please.” We really don’t know what my limitations are. I had no idea I was straining my back so much. I need to ease up tomorrow because this is awful.
Food, more ibuprofen, more ice, journal, meditation, sleep. Day three complete.
I start the morning with a check-in/ pep talk from Ryan: The body, the mind, and the ExoSym are like three different sheets of music. They’re all doing different things and they need to come together as one. It’s a big ask for me to use muscles I’ve never used before.
While I wait for Jared, Ryan gives me the assignment of walking up and down the length of the gray walkway with poles, in front of a mirror to watch for hip drop. I’m looking forward to continuing to work on my squish and load the devices properly. I hope I get to use the pole-and corset combo again. But it turns out that I’m in for completely different stuff today.
Jared arrives and tells me to continue walking: 10 up-and-backs. Before I finish, he stops me and asks me to walk backward. I knew I’d be asked to do many things I am not comfortable with. That’s the point. I told myself before I came that I would attempt everything without making a big deal out of it. Walking backward first thing on day two is a big ask. I can’t help but remind Jared that I usually have a hand holding on to something at all times. That it feels very likely that I’ll fall over backward in these things. I’ve already had a few suddenly-off-balance, full-body clenches. Not to back out or protest, exactly. Just to let him know that this isn’t going to go smoothly.
My legs aren’t strong enough to step backward without my upper body leaning forward to try to help. “Try not to hinge at the waist,” Jared says. Yeah, no kidding. I put enormous pressure on my hands/wrists/arms leaning so much on the poles. Plus, these things are heavy. Jared tells me to put my hips forward. When I lean my upper body forward, I am not “loading” the devices anymore; my weight comes away from the knee cuffs instead of going into them. I need to do so much work on my core.
I have over two minutes on the vibration plate today. I feel it in my teeth. It’s so weird and exhausting. But nice? When I step off, my lower legs feel completely heated up. The synthetic sleeves under the braces are so hot.
Next, it’s time for balance work. I stand between two vertical metal bars (like for lifting a barbell while standing). Put my feet together and apart. Try to take my hands off the bars. Step up onto a small block. Jared brings over a mirror so I can see if I’m keeping my hips level. I am not. My body and brain do not know how to correct this. Now take one hand off the bar, then the other. My toes and calves clench and my knees want to buckle.
The only thing my body really refuses to do is let me raise my arms over my head or out in front of me. I’m not ready to let go of the bars for that long yet. Mental block or physical limitation? Both, I think. Perhaps I could have done it were I not on the block, or if I were between parallel bars instead. Next, we try the balance board, again trying to stand level and take one hand away.
Following that, I do some ab work on the floor. That means that I have to get down onto the floor. Jared uses a bench and shows me a couple different positions. One is spreading legs far apart and bending one knee. That one is definitely out. The other is going into a lunge position and bending the back knee to the floor. I try that one. Before my back knee is down to the floor, the ExoSym on the front leg bites into the back of my calf. Hmm. Once I’m kind of kneeling, I’m kind of stuck. I’m supposed to move one hand from the bench to the floor and lower myself down the rest of the way. I do it, ExoSyms clattering together as I position myself on my bottom somehow.
Clear view of the struts up the back.
We try several positions for me to engage my core well. I end up on my back with one leg bent, one straight, a folded yoga mat under the extended foot so it will slide even with my shoe on. I bring the extended leg in and back out, keeping my core engaged, trying to use my hamstring but actually kinda tweaking the front of my hip.
Jared has another patient, so he brings the bench and mat into a side room with parallel bars. He assigns me 9 more sets (eight on the right, twelve on the weaker left). In between each set, I am to stand up (haul myself up using the bench), walk up and down between the bars, and get myself back down onto my back with my foot correctly positioned on the folded mat. Nine times. Sure, no problem. Ryan pops his head in and asks how I’m doing. From the floor, I say I still have seven more. I mean seven more complete sets, but the next time he comes in, I’m up between the bars, and he plucks the mat off the floor and starts sanitizing it. I feel very relieved. My right side is starting to hurt anyway. You can see in the video that Ryan has me progress to only using one hand on the bars. He’s encouraging about my hip drop. Then he tells me he’ll see me tomorrow. I still had four or five more sets to go. Don’t tell Jared.
Walking with two hands and then one. In between sets of ab work on the floor.
I am supposed to come back early in the morning to get my knee sections. I am nervous because I know that they will add so much more bulk and weight. But I’m also ready because they keep telling me how much progress I will make with knee sections. They should be ready by 8am. I will wait for a text from Ryan to confirm.
Food, ibuprofen, journal, meditation, sleep. Day two complete.
Disclaimer: This post and the ones that follow are going to recount my ExoSym Training Week at Hanger Clinic in great detail. They are meant to be a record for me and provide an account for CPers who are embarking on their own ExoSym journey.
I’m back from the Hanger Clinic with my ExoSyms.
Burning question: Was I able to walk out of there, ready to start my new life wearing the devices all the time?
Short answer: No. It’s going to be a very long process.
Saturday and Sunday are travel days. When we left off, I was lamenting new arm/wrist/thumb pain. And then I was marveling at improvements after an OT session. I have kept up with my new stretches pretty well, even though it feels a little silly to exercise my thumb. I love that I can do these stretches sitting at a table. No getting onto the floor and contorting and straining. Just movin’ my thumb. During the long hours in the car from California to Washington, I am amazed that my shoulder blades feel somehow lubricated. That when I stretch my neck, I can feel the muscles stretch rather than stay clenched in tension. I just hope it will last.
As a point of reference, here is what I look like in mid-June walking on my own and with poles. (After seven months of trying to work on core and glute strength with a home program set up by my PT.) I don’t often see myself walking, and honestly, it doesn’t feel as tough as it looks. It’s my normal. But man, that looks laborious. With the poles, I can see that I’m standing taller, with less side-to-side sway.
Training Day 1: Monday, 15 June. 9:30–2:15.
Monday morning, I feel curiosity and a cautious anticipation. It’s just going to be how it’s going to be. Mostly, as I do my stretches, I am super happy that my body is feeling pretty good, that my neck still feels like the vise has loosened.
My parents and I (my husband stayed home working this time) walk the few blocks from our hotel to the Hanger Clinic, where we are required to don not only masks, but also gloves. I quickly realize my cloth mask isn’t going to work with my glasses if I also want to see, even though it was supposed to mold to my nose. So I switch to the disposable provided. Hands are immediately sweaty. Not the most fun way to begin, but I appreciate the extra caution.
Prosthetist and ExoSym creator Ryan Blanck begins the day reiterating everything from my first trip last November. I have some permanent limitations and I have some weaknesses that have occurred, not because of the original cerebral bleed at birth, but because of the resulting body mechanics and compensations. For example, I have spasticity (increased muscle tone) that’s not going anywhere. I also have a weak core, but I should be able to strengthen that. It’s nice to hear someone tell me a lot that I already know about my body because it’s rare to meet someone who really understands how CP works. The devices are designed for a stronger, future me. It will be tough in the beginning and it will take time. Ryan also emphasizes that we are partners in this, for years to come. He wants text updates and weekly videos showing my progress. He wants to be in contact with my physical therapist. And he really means it.
At 10am, he brings in my ExoSyms, real carbon fiber now, with struts and all. He also brings in my shoes and heel lifts that go inside them from last November. He helps me put the devices on and checks the fit. “I’ll be impressed if you get the shoes on,” he says as he walks out the door to another patient. Maybe he just likes setting people up for success. Shimmy the shoe back and forth until it goes over the heel of the device, and it’s not too hard. He did let me know that it’s easier to do one device and one shoe before starting on the other leg, otherwise your carbon-fiber covered feet just slip everywhere.
Putting on my ExoSyms for the first time
Ready to take my first steps
Yes, the devices are heavy and bulky. They still feel like ski boots, but this time I am prepared for that. Ryan is still not in the room, but I pull myself up between the parallel bars and start walking up and down. Heavy, awkward, loud. But now I know that I need to learn to use them and to build up muscles over time. I am not able to imagine, right now, what it will feel like to move in them more freely, but I believe that it will happen.
ExoSyms are clunky and loud. But you can see the heel-toe gait that I feel rather indifferent about in this moment.
When Ryan returns, it’s time to get casted for the knee sections. Aha, that explains why there is a cast cutting saw and casting supplies by my chair. Somehow it didn’t occur to me that the knee sections are just as customized as the ExoSyms themselves. Ryan starts by wrapping my leg in plastic wrap, starting at the bottom of the knee cuff on the ExoSym and going all the way to my upper thigh. It’s certainly an interesting, rather intimate experience. We roll the legs of my shorts up, with my consent. I can barely stand with my legs far enough apart for him to squeeze the roll of plastic between and around my thighs. After the plastic wrap comes the plaster. Then I have to stand there, keeping my knees as straight as possible while the casts dry.
The yellow strips that he uses to guide the saw are up the back of my leg this time, so I cannot see him as he cuts the casts off. I grip the parallel bars tightly as the saw starts up, and the noise of it cutting into the plaster, combined with the intense vibration, takes me straight back to getting casted for AFOs as a child. The dreaded “tickler.” It does actually tickle, because the back of my thigh is very ticklish. But not in a good way. At all. I breathe through it, and one and then the other are done. Ryan takes the casts away and I practice walking more, with my poles this time.
Trying to walk with poles
Next, we go out to the front desk to hand over the cashier’s check for half the total amount. (I chose the in-house payment plan of half up front and the other half spread over nine months.) Thanks, Mom and Dad. I sign some papers and receive a hard copy for myself.
Then we return to the gym area. During this time, because of COVID-19, they ask that patients only have one support person in the gym, so Mom and Dad take turns being the photographer/videographer.
Ryan introduces us to Jared, the physical therapist. He then introduces me and my cerebral palsy to Jared. Ryan recommends training on flat surfaces only until my knee sections are ready, and then he’s off to other patients. Jared tells me a little about himself and his approach. He lets me know that, though he may seem like a drill sergeant sometimes, he has enough in his repertoire that if there’s something I’m not comfortable with, he will be able to adapt it. He reiterates that these devices are designed for a future, stronger me. He realizes that sometimes our minds understand actions that our bodies don’t know how to do yet. He asks what I want out of training, and I tell him my three goals: walking, stepping up and down (as from a curb or bus), and getting down onto and up from the floor.
We go over to the parallel bars, and the first thing he teaches me how to do is “load” the devices. This means leaning into the knee cuffs, putting your weight into them and keeping it there throughout the step. First, he has me lean forward onto my hands until my heels come up. Then I take steps on the balls of my feet, trying to keep my shins into the cuffs and engage my core. Next I come down from the balls of my feet, and I’m supposed to do the same thing–no leaning forward. I’m doing better keeping my weight into the device with one side than with the other. Jared demonstrates what I’m doing wrong, and I try to fix it. Then he gives me a different verbal cue, and that works better. I am praised for being able to modify my gait successfully. Synthesizing verbal and visual instructions into a physical outcome is no joke.
After learning to load the devices, it’s time to work more on core engagement. Jared asks if I’m willing to try wearing a tight belt with a pole down my back. Sure. When he returns with the equipment, he asks my permission to put the belt around my waist. When I say yes, he does so, and tightens it. It’s REALLY tight. The pole goes between my shoulder blades and through the belt, creating a gap at my lower back. Jared puts a mini bottle of baby powder into the gap, telling me to squish the bottle using my core. Let me be clear. Intellectually, I understand the action. It’s a pelvic tilt. I have never been able to do this well, especially while standing. (My pelvis is busy when I’m standing, and you want me to tilt it?)
I don’t know that I actually squish the bottle, but my back contacts it, at least. As I “squish,” my heels come up off the floor. This is what everyone means when they say “engage your core” when walking. It actually helps power each step. Huh.
Jared tells me, “Do 100 please.” Then he amends, “You already did ten, so do ninety more.” So I stand there holding on to the parallel bars and do ninety more squishes. Jared had already let me know that he only counts to one, so I knew to keep track myself and never ask him what number I’m on. When I make it to 100, I walk. It takes several tries to put the squishes together with walking between the bars.
Next Jared gives me my poles and takes off my corset. I immediately feel like I’ve lost the squish, even though I’m keeping my weight into the knee cuffs. I ask if it’s possible to cheat somehow, because I seem to be doing it, even though I can’t feel it. Jared assures me that there are several indicators that I am doing it correctly and asks for one of my poles to demonstrate. I hand it over and I feel, right at that moment, as if I’m teetering on the edge of staying upright. I can barely listen and feel a little panicky. I want to reach out and take my pole back from him. Relief floods me upon its return.
I walk along the gray walkway really trying to load my devices, really careful and concentrating. Then he asks me to walk as fast as I can, without thinking about all that. It’s maybe half my typical speed? I don’t know. Extremely slow and laborious. And not yet possible at all without poles.
We return to the parallel bars and Jared has me step up onto a very low box and down. Up again and down backwards. You can see in the video that I do a double take at that. (Yes, we did discuss how Ryan distinctly said flat surfaces only.) I can do this, stiffly and slowly, as long as I am holding on tightly with both hands.
I tell him at some point, during some activity, that my toes are gripping and my calves are tightening up. Ah, he says, in recognition. He has me step up onto an electric vibration plate next to the parallel bars. I hold on to one bar with both hands, nervous. I have heard of these, but I’ve never used one. He asks whether I want him to start in at full speed, or go low to high. I say start low. He turns it on, and before I can process any sensations, it’s all the way up. Holy moly! Almost indescribable. My vision is vibrating. My brain. If I shift, I feel it in my vertebrae. By turns amazing and completely unpleasant. Jared leaves me there, vibrating for two minutes or more. This is a very long time. When he returns, I am more than ready to get off. I suppose it could relax me if it didn’t freak me out.
We try to do more balance work, like raising my arms above my head. My toes are relaxed for one or two seconds before they grip up again. Lastly, he tells me to grip a very thick band in both hands that’s looped around one bar and raise it straight up. This I cannot do at all, but I am stronger on one side than the other. Jared is noting how my body functions.
My first session with Jared is over! I practice walking some more while waiting for Ryan. When he asks how everything is going, I tell him that my right heel is burning, and my left a little, too. He has me take off my ExoSyms to make some adjustments. We wait a long time, about an hour. If Ryan tells you “a few minutes,” be prepared to wait longer.
He brings back my ExoSyms with more arch support, to offload the heel. When I put them back on, the arches feel very noticeable, hard and uncomfortable, but the heels are better. Soon, I don’t notice the arches so much. Ryan bids us goodbye, telling me to do ten good steps in the hotel room, without letting the left hip sink. “Ten good steps are better than 100 bad ones.” It’s 2:15 by the time we leave, and we’d been there since 9:30. Lesson: If something hurts, tell Ryan as soon as you realize it, just in case he’s less busy then. Also, if you have downtime and you’re mobile, use it for restroom/water/food, even if you think it’s just going to be a minute. You’ll probably have plenty of time.
Recall that we had walked to the Hanger Clinic from the hotel. Recall that I had just put on my ExoSyms again to check the heel/arch. Mom and I walk out of the clinic, so relieved to take off our masks and gloves and breathe freely again. I figure I might as well try walking back to the hotel. I don’t want to sit down and take everything off and switch to my other shoes. It’s not that far, and it’s flat. Sure.
As soon as we leave the building and reach the parking lot, I realize it’s a bad idea. I am tired. I can’t remember any of the pointers I’ve been given, and my gait feels so uneven. Like I’m lopsided. Then I reach the first curb cut–up–and I almost fall over backward. Unlike any experience I’ve had. No wonder Ryan told me to stay on flat surfaces. There is no ankle flexion when in an ExoSym, and inclines need a special technique. I haven’t learned to do that yet. There are several more curbs to come. I walk so slowly, inching along, trying not to panic at the course I’ve set myself on.
We make it to the hotel, finally. And I’m never doing that again.
I am very tired, and I have VERY sore glutes medius. Food, ibuprofen, journal, meditation, sleep. Day one complete.
My trip begins tomorrow, and I spend next week at the Hanger Clinic in Gig Harbor, Washington, learning to use my ExoSyms.
But first, I must document yesterday, June 10. At 9am I went to my first occupational therapy appointment for my wrists/hands/thumbs. I gave her the whole story about using trekking poles and then having pain and not using them (for months with no improvement). And now I need to use them, so I need help. From behind masks, we did the strength and range-of-motion baseline assessments. My therapist told me that it sounds like I have several things going on (yay). She gave me exercises for De Quervain’s tendonitis and the radial nerve. Showed me how to massage the palm side of my forearm with two tennis balls taped together. I’ve never thought about those muscles being tight before, but she said they were. She massaged them with cocoa butter, which was the first time I’ve had human contact from someone other than my spouse in three months. She showed me how to tape my thumb and wrist and also approved of the brace I’d tried. Made adjustments to my trekking poles to try to keep my wrists in a good position. Sent me on my way. Productive appointment.
Later in the day, my neck and shoulders–the whole trapezius–began to feel different. Tingly. A little like the clamp on my neck that’s been pulling my head and shoulders painfully toward each other for four years was…loosening. Some. I got down onto the floor and carefully went through the stretches I’d been given years ago (and still attempt regularly). And I felt actual stretching, not just fighting against tension. Huh. Perhaps this was how it was supposed to be all along. Perhaps this is why physical therapists often seem a bit skeptical/frustrated when I tell them stretching only feels the same or worse. Because I’m supposed to feel this instead of that. Maybe now all those things I’ve tried before will actually work? Quick, somebody give me some Flexeril! Kidding. Sort of. After stretching, I meditated (third consecutive day!). And darned if I didn’t achieve a full-body floaty relaxation. Wow. What’s going on? This morning, when I sat down to put on my shoes, I think it was just a bit easier to bend over and reach and pick up my shoe from the floor.
So what did it? Did I just need someone to massage my forearm with something that smelled like chocolate? I’ve had my forearms massaged before. Maybe not for that long in just that way. I am getting better at meditating. Maybe that’s it. Distance learning is finally over for the summer. Maybe that’s it.
It’s not as though my neck pain is gone. There’s still a long way to go. But now I know that less pain is possible. That I can continue to work to loosen the clamp.
It’s ExoSym time! I’m trying to be excited and positive, but honestly, I’m scared of how hard this is going to be. I’ve never asked my body to do something like this, and I don’t know how it’s going to handle it. I cannot expect to strap them on and go like so many others. Another ExoSymmer with cerebral palsy pointed out that it’s a little like having surgery. A period of rehabilitation must follow. There might be pain; there will definitely be soreness. We have to give ourselves time to adjust and build our strength. Weeks. Months. Years.
Megan, who blogs at Wheatfield Ramblings, has very helpful advice for people who are just starting their ExoSym journey. One tip she gives is come with goals. Here are mine:
During my week at the clinic, I would like to learn how to:
Walk
Step up and down, as with a curb or onto and off of a bus
Get down onto and up from the floor
After all, I have to start at the very beginning. It’s a very good place to start.
You know how there are dog years and human years? A thirteen-year-old dog is old, but a thirteen-year-old human is not.
There is also cerebral palsy time. Generally speaking, people with physical disabilities use more energy than their able-bodied peers to do the same tasks. I don’t know for certain how much more energy I use to walk a mile than a nondisabled person. But I’m pretty sure it’s a significant amount. My fitbit says my heart rate is 90 or more, while my husband’s is in the neighborhood of 70.
Spoon Theory was originally coined by Christine Miserandino when she was trying to explain to a friend what it feels like to live with lupus. It’s meant to help someone understand invisible disabilities, or conditions that are disabling but are not immediately visible. It has since been applied to disabilities in general, and some even embrace the term “Spoonie.” I do not, because I do not need any cutesyfication of my life.
Spoon Theory goes something like this. Everyone starts out the day with a certain number of spoons. Various tasks use up various numbers of spoons. When you’re out of spoons for the day, you are done. Let’s say I have twelve spoons. For me, taking a shower uses up two spoons, getting dressed one, putting on shoes, one. Getting to work could be one or two or three, depending on whether I walk or bus and whether I have a seat on the bus or stand. So let’s say I’ve used up six spoons and it’s only 8:30 in the morning. Time to start my day. Able-bodied people maybe use–one or two? So, I don’t shower in the mornings. I conserve those spoons for the work day and shower later. Cooking takes spoons. Standing, chopping, getting chopped food into pot without spilling. Going back and forth for ingredients and utensils. Emptying the dishwasher, as I’ve described before, takes spoons. Laundry. Spoons. If you sleep well, you can replenish your spoons. If you don’t, you may start out the next day with fewer spoons. Chronic pain affects sleep, etc. etc. Some days might be better than others and you seem to use fewer spoons on the same tasks.
Story time: I stayed with my sister for a week and did the cooking. We picked out some tasty new recipes that were more complex than my usual beans-and-rice fare. Her kitchen is way bigger than mine and I didn’t know where anything was. Sure, new recipe, bigger kitchen, and new layout will take some getting used to. But wait, the stove is in the corner, with no countertops next to it. It’s one of those cool antique gas ones, and I literally cannot touch its surface safely once the burner is going. So I’m supposed to bring a dish of mixed ingredients/liquids over to a bubbling pot and pour it in. Remember, I have trouble stopping my body’s forward motion. Enough with the excruciating minutiae. The meal took many spoons.
Sometimes I feel like I should/could be doing more. I work 23 hours a week (well, I did when school and tutoring were held in person). I know that all of you who work full time and more can hardly imagine the luxury of working part time. So much time to fill with all the things you actually want to be doing!
But really, when I make it through the day, even if that day ends at “only” 2pm, I feel done. Twenty-three hours in CP time has to be close to forty in able-bodied time.
Most nights, I call from the bedroom to my husband in the living room, “Did I make it?”
And he’ll respond, “9:02.”
“Yes! Good night.”
Sometimes, it will only be 8:43, and I’ll have to make myself stay awake for seventeen more minutes.
Functioning takes energy. Fatigue is real. Pain is real. Working part-time is okay. A person’s value is not measured by how many paid hours are in their day. That’s a hard one, American people, but it’s true.
Not all disabilities are immediately apparent like mine. I’ve had to grow and learn and discover that there are many, many conditions out there that are disabling. What’s more, chronic conditions are loads of unpredictable fun. People can feel okay to walk one day, and need assistive equipment another.
If someone uses disabled seating, or restrooms, or parking–believe them. Remember that you do not know this person or what they live with or what it feels like to inhabit that body and that brain. Let’s all try to be kinder, more empathetic. Let’s all try to imagine others complexly.
What Happened to Your Legs? 