On December 7th, I had a doctor’s appointment for my back. My doctor asked me to get up on the table, but then she offered to do the exam while I remained seated in the regular chair. Gratefully, I agreed. I can climb up onto those exam tables, but getting down is even trickier.
She felt and prodded down my spine and the surrounding muscles, up to mid-back and down around my hips. Whenever she asked if there was tenderness, I said yes. Usually, I say something like, “Yes, but that’s always tight and sore.” No longer do I say “Not really.” I don’t try to downplay my pain or be “tough” as we are trained to do. In daily life, yes I function with pain and it’s a normal part of my life. But when I’m at an appointment for pain, I own it. Why yes, actually, since you ask, my whole body is tight and painful.
She put in an order for an x-ray and we moved on to my throat issues. I haven’t followed up since the upper endoscopy in October led to the diagnosis of reactive gastropathy. Again she gave me the same options as before: new ENT referral, referral to integrative medicine, and imaging of the throat (like for a tumor or something else external and not visible from inside the throat). I do have my original GI video appointment in January, which was scheduled before I was able to get in for the “urgent” endoscopy. Since the diet changes and the stopping of all NSAIDs haven’t seemed to improve the gastropathy, I’m interested to see what the GI will suggest. It’s funny, now that I have the diagnosis of an inflamed stomach lining (which didn’t seem to match what I was feeling), I am making connections I didn’t before. Symptoms of reactive gastropathy include feeling full too soon, loss of appetite, and weight loss. Those are definitely not me. But other symptoms are nausea and pain/discomfort in the upper abdomen. And those definitely are me; I’ve just been attributing those to other things. I’ve not found anything connecting gastropathy and throat pain per se, which is the symptom that started this whole thing.
Anyway, I went over to have the lumbar x-ray right after my doctor’s appointment. It’s only the second x-ray I’ve had in my adult life. I was asked to get into several positions on the table, and then had several more taken standing.
The results revealed that I do not have a compression fracture or narrowing of the disc space that would cause bulging discs.
I do have mild arthritis at the facet joints of the lumbar spine.
Truthfully, it felt like a bit of a blow. I’ve known since I was a child that doctors predicted arthritis for me by age 40. But to have it confirmed, and in a part of my body that I don’t even think of as one of my main trouble spots, well, it was emotionally rough for a day or so. Because it’s not going away; it’s only going to get worse.
My dad reminded me that the skeletal system peaks at 30, and that anyone who makes it into their 30s will therefore not have a perfect spine. What’s more, when my physical therapist looked at the x-rays, he said that I was “blessed with beautiful spaces” between each vertebra. So really, at 39 with CP, I could infer from this information that I’m doing pretty well.
So I have arthritis. Obviously, it was there before November 1st when I injured my back. The arthritis isn’t the culprit in this situation. I could, if I wanted, start looking at treatment like a facet block, a nerve block injection in my spine. But the pain isn’t the problem. The added pain–I’ll say usually a three on the highly subjective pain scale–fits right in with all my other threes/fours/fives and isn’t something that I find overwhelming right now. It’s the decrease in function. I don’t trust my body to get me where I’m going. I mean, I trust it even less than I did before. It’s gotten better, yes. But I’m not where I was pre-November. And it’s possible this is my new normal. If this is my new normal, where does that leave the ExoSyms?
At my last PT appointment, on December 16th, my back was already flared upon arrival because of the walk there. Once it’s flared, that’s it. Nothing’s making it better, but some things could make it worse. So all of the “Let’s try it this way–does that help? How about this way?” All those attempts result in, “No, no better.” Frustrating for the therapist, but normal for me. So we are still at the very beginning. My gait produces a side-to-side motion that hurts my back. I need to strengthen my core and glutes to try to combat the side-to-sideness. But it’s always going to be there to some degree: that’s what having CP is. We don’t want to move too fast and reinjure it, or keep it constantly flared. So I’ve been given the same exercises with variations I’ve been given by various therapists over the years. My PT says maybe just we keep working on my back. And don’t do the exercises every day. Try every other day to start. How nice it was to not have the “three times a day” expectation put on me. To be told to take it slow. Maybe it’ll be a few more months. I can’t deny I felt relief being given “permission” to stay out of the ExoSyms.
I’m afraid to put my Exos back on. That’s the truth. The longer I go without them, the harder it feels to start again. I don’t want to put them on and hurt my back again, or fall on my tailbone again. Even if I don’t full-out hurt myself anew, I know my back will hurt.
I knew it would be a long, slow process. But I didn’t really contemplate injuries or months-long setbacks, which is a good thing. It’s been six months now since my trip to Hanger. This is day 200 that I’ve owned my ExoSyms. The first day, Ryan said, “You’ll use poles in the beginning, maybe for the first six months.” I knew this was an estimate. I knew that everyone’s journey is different. I’m fine if, years in the future, I’m doing well and look back on my first six months as a bit of a wash.
But sometimes this crosses my mind: What if the ExoSyms aren’t right for me? What if they’re just too much for my aging body to handle? It’s entirely possible. I can’t deny it. There are no guarantees. This whole thing was an experiment from the start. Then I remind myself, give it a couple more years.
On this final day of 2020, this is where I am. Mentally and physically tired, full of doubt, lacking motivation. Eating lots of cookies. I want my montage song to start, where I face my fears and strap my Exos back on and end triumphant. I want my montage song and I want a nap. I’m not making resolutions or forcing myself to recommit to a list of goals. I don’t know what will happen in 2021. No one can know. There’s comfort in that. Possibility.
Note: I have cerebral palsy (mild spastic diplegia) and came to Hanger Clinic for bilateral ExoSyms with knee sections. Not many people have two Exos with two knee sections. Your experiences might vary widely from mine, especially as far as mobility in the first days.
After my test device trip, I knew I would need trekking poles. I practiced with them months beforehand and brought them with me for training week. They have some there for you to use, but if you need them for training, chances are you will need your own when you leave.
Be prepared to wait. Use the time for bathroom/water/food even if you think it’s only going to be a minute. The first day, I was there for several hours and didn’t drink anything or have a bathroom break. The room with the cubbies (where my water bottle and snacks were) is at the other end of the gym from the restrooms. And I could hardly walk once I had the Exos on, so I felt a little bit stuck.
Be prepared for a schedule different than the one they email you beforehand. I was able to come in earlier on several of the days. For me, the test device trip was our sightseeing trip. This one was all work (and rest).
Tell Ryan as soon as you realize if something doesn’t feel right. He’s booked throughout the day, so he was trying to make adjustments for me as well as see other patients, and the wait-time was long. The earlier he knows, the earlier the chance you have of getting out of there.
Ryan and Jared have different styles and approaches, and you might hear pointers and ideas that seem to be in opposition. It’s a lot to take in.
If you have a support person with you, ask them to take notes for you and put a star by the cues that work well. We hear so much information throughout the week, and we’re supposed to synthesize so many actions simultaneously.
Ask your support person to take a lot of pictures and video. Not only is it great to have documentation of where you started, it will also be helpful if you can record Ryan or Jared as they are explaining how to do a particular movement, especially to share with your physical therapist when you are home.
Do go back to the clinic to work and practice as much as you can. Two of the days I had good, long sessions alone, and it was really what I needed. Especially as an introvert. It takes time to process and apply all that we’re learning. Plus, most of us don’t have parallel bars and a mirror at home. I really miss practicing with parallel bars.
Jared has thousands of hours of experience, but he only just met you. He doesn’t know you or your body yet, and there’s really no time to build that relationship. It’s an opportunity for you to try to be more like the person you want to be (for me, braver), but he also won’t know when he’s reaching your limit unless you tell him. He only started figuring out the strategies that worked best for me, both physically and psychologically, on the last day. We finally start to get to know each other and then our time is at an end.
Jared will ask you if you have any goals before you get started, so if you don’t want to be caught unprepared, think of a few ahead of time.
Wide Shoes Only is more than a recommendation. I highly urge you to do what you can to go there.
If you are flying, try to leave lots of room in your luggage or bring an extra suitcase. I would not have wanted to wear my Exos through an airport or on a flight, and two Exos with two knee sections take up a lot of space. There will also be extra knee sleeves and heel lifts, plus the shoes that fit your Exos, and any additional shoes you buy.
I love a good movie montage. An upbeat or inspiring song begins and our protagonists embark on a series of impressive and exhausting feats over a period of many days, weeks, or months. By the song’s close, gains have been made, goals achieved. Progress. Transformation. All within the space of a single song.
My favorite montages come from
Dirty Dancing. Johnny teaches Baby to dance. (“Wipeout” and “Hungry Eyes”)
The Cutting Edge. Doug learns to partner, and Kate and Doug push each other in training. (“Groove Master” and “Ride on Time”)
Girls Just Wanna Have Fun. Janey and Jeff learn to dance together. Janey teaches Jeff gymnastics. (“I Can Fly”)
Footloose. Ren teaches Willard to dance. (“Let’s Hear it for the Boy”)
Honorable mention:
The Mirror Has Two Faces. Rose makes a change. (“The Power Inside of Me”)
Are you seeing the theme here? Clearly, I love stories in which people learn to dance. I’ll save writing about dance for another day. Today’s topic is time and progress.
With fewer than thirty days until my second trip to the Hanger Clinic, where I will receive and be trained in my new ExoSyms, now is my time for a montage. Time for an uplifting beat to float out of the ether and start me off. Or, if source music works better for you, time for me to pop my earbuds in and get to work:
Cut to me getting up early to stretch and strengthen.
Cut to me attempting to plank, and side plank.
Close up on my determined face.
Cut to me walking with my trekking poles.
Cut to me stretching out my calves while I microwave my lunch at work.
Cut to me at my PT appointment.
Planking at home.
Using my DIY balance board.
Sleeping.
Waking early to stretch again.
Making smoothies. Eating vegetables.
Planking again.
Planking again–and succeeding?
This is where the vision falls apart, with the progress and transformation. Once February arrived and I had about two months to go, I knew I needed to buckle down and really be dedicated. But I was working, and editing, and tutoring. Cooking and cleaning and laundering. Reading and sleeping. Spending way too much time online. Living my daily life. Can any regular person, who isn’t an athlete as their life’s work, maintain enthusiasm, drive, energy, commitment for so long? Well, yes. Of course there are people who do. Not montage-level dedication, sure, but there are people who set goals and reach them. I am not one of those people, historically speaking.
I’ve always found January and February more challenging motivation- and healthwise than November and December. With the holidays approaching there’s excitement and anticipation, activity. With the holidays past, there’s winter and work, and several breaks from work which are full of Netflix and the mountain of chocolate and treats resulting from Christmas, birthday, and Valentine’s Day. There was also cake. And ice cream. As there should be. I savored the gluttony and the slothfulness, but I can’t be surprised I’m having to claw my way out of it now.
Not gonna lie–the first three weeks of February were rough for my body. It’s always an interesting exercise to try to quantify and describe pain. Last month, my piriformis and SI joints were making themselves known. I go through some periods of time when that’s not the case. When my hips just feel tight and achy, but not in pain. So when one is set off, in that sharp, strong way, it feels like, “Oh, right, there it is. What I was feeling before wasn’t really pain at all.” And I remind myself that even though I never know quite how to get things to calm down again, they eventually do. The trouble is, once these areas are aggravated, so many movements throughout the day keep them aggravated, and after one week, two, three, I was beginning to wonder if this was the time that they were just going to stay angry forever. Usually if both sides are upset, one side hurts, and then the other, throughout the day. And I’m so grateful for that. I think I might lose my grip if both hips were screaming at once. But then they did (in different ways and to different degrees) and I still have my grip.
The pain is dynamic, changing from minute to minute. Sometimes it’s sharp, almost burning. Sometimes it feels muscular, sometimes it doesn’t. It travels down my IT band. It pulls at my inner knee. It moves down to clamp onto everything that meets at the head of my femur. Occasionally it throbs. Or it feels like a bit of stabbing, quick jolts cutting through the rest. Once or twice it has felt like what I can only describe as a second of gurgling, or a gargling. And I wonder what the heck is going on in there.
Mostly, I stretch it and I stretch it and I breathe. The pain itself is not so bad. Never would I rate it an 8 or a 9 or a 10. Because pain can always be worse. What’s bad is that it does not stop. That I cannot help it ease. No heat, rest, NSAID, muscle rub, or stretch will provide relief. I’m very aware that I could be stretching incorrectly, and that lying in bed is sometimes the exact wrong thing to do. Sometimes I start pounding on it with the side of my fist, hardly realizing I’m doing it. I want to drive a hot poker into the pain. I want to pop my leg out of its socket and put in a new one.
Meanwhile, I have new PT exercises (that are probably aggravating things) that I am supposed to be doing twice a day (ha!) in order to make the most out of what might possibly be the most important and most challenging five days of my life. I skip them a lot.
Here are some images just so we all have an idea of what I’m dealing with. On my body, obviously, there’s spasticity and lack of control. Several of these muscles have been lengthened (weakened), and there’s been a muscle transfer as well. Check out all those muscles under the gluteus maximus! Much of my pain is in that mess.
So, with March looming, I cut back on sugar, and on screen time, and I finish my editing project. I meditate and I stretch and do my exercises the best I can. One day (Sunday, February 23rd), I found a stretching position that I could manage to relax in while still maintaining it, that felt like it was hitting the spot. And it felt better. Noticeably better. I almost cried with relief and gratitude. Excitement. Triumph. Hope. Hope that I could keep these muscles and joints happy until I made it to Washington and the Hanger Clinic. Of course it hasn’t exactly gone that way. But my muscles and joints are still noticeably better than they were before. When I stretch lately, it feels like the muscles are actually stretching, instead of me fighting a brick wall. One morning after stretching, I took up my poles and did a turn about the neighborhood. As I walked, I felt a tingling at the back of my neck and down into my shoulders. Unlike anything I’ve ever felt. What is this magic? I wondered. Is my neck actually relaxing? While I’m walking? Will my neck feel less tight? Am I currently receiving the amount of blood flow to my head that I’m supposed to? There was no momentus decrease in overall neck tension, but it was a lovely moment.
The montage is a fabulous storytelling device, but real life is not a montage. I know I’m not the only one who’s ever wished to speed through (to a motivating tune) the daily grind and just finally be there–wherever the there is. Day by day, I’m nearing my “there.” And I am getting stronger. I am making progress. It’s tiny, but it’s there. My stint at the Hanger Clinic will arrive. In the meantime, I’m not living in a constant state of motivated, dedicated, driven, inspirational activity. I’m incorporating a reasonable–for me–amount of daily preparation. Could I do more? Absolutely. Will I wish I had? Don’t know. Would it really make a difference if I did? Perhaps.
I’m back from my trip to Washington. My husband and I had a wonderful time. If you’re ever in Tacoma, I heartily recommend the Washington State History Museum and the food at Viva.
You’re never too old to enjoy an interactive museum.
“Nooo!” We learned where the phrase “Your number is up” comes from.
Our road trip to Port Townsend was beautiful and the food at Owl Sprit Cafe was delicious. I also heartily recommend heated seats if you rent a car in November.
Monday, 25 November 2019. Hanger Clinic Day One: Casting
After I checked in at the Hanger Clinic, we were shown around. The main room is a gym, lined with doorways leading to offices, a casting room, a walking room, an adjustments room, and a closet full of shoes. There’s also a little snack/break room for everyone in training where they can store their belongings and stay hydrated and fueled. And coffee, several coffee stations throughout the building. A map of the world hangs on the wall with pins in it, representing ExoSym patients.
Here’s what an ExoSym looks like.
For casting, I sat in a chair at one end of a set of parallel bars. I got to hold and explore an ExoSym. It was way heavier than I thought it would be, big and bulky (probably for a grown man). I tried not to worry yet about getting used to wearing two of them.
On the floor at my feet were a container of water and a cast cutting saw. The “tickler” of my childhood. This nickname was supposed to make the noise and the blade moving toward my skin less scary. The vibrations from the saw “tickle,” get it? This thing terrified me as a kid, and I can remember crying in a panic when it was time to remove the casts for my AFOs, even though Ray (my orthotist) assured me that the saw would not cut me.
Ryan, the prosthetist at Hanger, came in and did a few quick (seated) strength tests. It goes something like this: “Bring your knee up into my hand. Push hard. Harder. Okay, now don’t let me push your knees together…” He asked me to stand up on my toes. Which I can totally do when I’m hanging on to parallel bars. A few minutes after these tests, I could feel pain settle into my right piriformis/SI joint area.
Then a woman came in with a laptop and asked me questions about pain and activities and what I wanted to be able to do. These are the same questions from the application, and she added to/revised my responses. I told her that I would like to be able to get back to where I was at about age twenty-five, before all the chronic pain started presenting itself. Also, I would like to have the confidence that I can get up from a fall by myself. (I’ve recently discovered that it is now VERY difficult to get up from the floor without something to pull up on, and that’s scary.)
The ExoSym program has been serving civilians since 2013, with about 4,000 patients so far. I asked how many applicants are not accepted. Somewhere around ten. Ten people who used wheelchairs most of the time and/or who didn’t have enough function to be able to really use the brace. And how many people try it out and then decide it’s not for them? I didn’t get an exact number, but sometimes a condition requires further surgery. Annika the Amputee, for example, tried the brace but was still in pain from the tumor in her foot.
First, I had to put two nylon socks on each leg. Ryan was very quick with casting.
Two layers of nylons socks. Ready for casting. Cast cutting saw–the tickler–is the blue thing on the right.
He did my right side first, while I was sitting, and then I stood up while he did the left side. This surprised me a lot, especially since he could tell when I looked up or down while he was working. If the position of my head makes a difference, isn’t one cast seated and one cast standing going to be very different? My legs certainly felt very different.
Thought I’d be sitting down after these adjustments, but I continued to stand for the second cast.
Casts are drying now.
Then it was time to cut them off. “Oh boy,” I said. “This was called the tickler when I was little.”
“Trauma?” Ryan said sympathetically. “Now we have these thicker plastic strips, which are probably a lot different than what you had.” It’s true. Instead of small rubber (?) tubing, he used strips that were flat on one side, with a groove on the top, and quite rigid. He made quick work of getting the casts off, “unzipping” them with the strip when they were nearly cut through.
After I put my socks and shoes back on, Ryan took us on a tour of the back, where the braces are made. Everything from start to “finish” is onsite. There really is no end, because we can order replacement wedges and sleeves as necessary and Ryan will make adjustments over months or years if needed for any issues, like “changes in mass” (weight gain/loss). He made sure to give me his number and take mine so I can text him with questions and updates.
So the first day was fine. Afterward, we went to Kopachuk State Park and I tried not to stress too much about what was to come.
Kopachuk State Park
Tuesday, 26 November 2019. Hanger Clinic Day Two: Test Devices
The next day, we are put into the same casting room so I can change into shorts. Ryan asks about shoe size. And then we wait. Finally we’re led across the gym to the walking room. There seems to be only one patient in the gym. He has two devices, one with the knee joint. I want to watch his workout. The PT sets up obstacle courses, and there’s a rope hanging from a track on the ceiling to hold on to; I can hear the rope slide along the track, but I can’t see what he’s doing.
Ryan has fitted “hundreds” of CP patients with the ExoSym. He tells me I will feel weaker in the beginning. I will need to strengthen my core and my glutes, use muscles that I don’t engage with my current gait pattern. It will take two years for me to achieve full potential function. This comes as a slight shock because other ExoSymers–with congenital conditions–have been told one year. Two years of working really hard. Okay.
My two test devices.
He brings me a pair of new shoes and asks if we could lace them up. A full size bigger than my usual shoe, and extra wide. Then he leaves again. As I read on another blog: Ryan is busy. Seeing patients off who have completed their training, taking calls. He brings me a pair of sleeves to put over my knees. We put the braces on and he marks where to cut the excess off at the toes. Disappears to the adjustments room. I wonder if I have time to use the bathroom before he returns again. Just walking to the bathroom in the tight synthetic sleeves feels weird. Finally, he brings in heel wedges to put in the shoes, straps me into the braces, and finagles my feet into the shoes.
Putting on the knee sleeves after lacing up some giant shoes.
I pull myself to standing using the parallel bars. I let Ryan know it feels like there’s more room around my left calf (the cast I was standing for) than my right. He checks it and says it looks good, but adds that my body is valid in perceiving that sensation, or some such diplomatic acknowledgment. Perhaps it doesn’t matter that much because the area around the calf will be open on the real devices.
I take a step. Two. Heavy. Bulky. Cumbersome. Stiff. Like casts. Or ski boots. Like trying to walk in flippin’ ski boots–with cerebral palsy. No magic. No amazing shift or change. I had hoped I would feel the “energy return.” But the test devices don’t have struts, so that part is not there yet.
Very quickly, Ryan prompts me to take one hand off the bars, to try to glide the other hand. Hand gliding is not possible. He says he can see that I’m standing up straighter. Really? Isn’t that maybe because I’m holding on? He tells me to try walking heel-toe, use my core, take bigger strides. I clomp forward. I try. “Can you tell she’s straighter? Have you ever seen her walk heel-toe before?” he asks my husband. “Now this is only about thirty percent of what they can do,” he tells me. This doesn’t mean anything to me. I do not feel that they are doing anything but weighing me down. I feel, not just weaker, but more disabled, not less. I do not want seventy percent more of this.
He gets me a pair of trekking poles. I stay between the parallel bars as he adjusts the poles and tells me to try them. It’s not that I’ve never thought about using poles before. I’ve always hesitated because–how much stability can they give me if I’m the one holding them? They seem to just complicate things.
So I stand there in my mock braces, holding these poles, and I can’t move. “I don’t even know how to start,” I say. But somehow I do, I take steps toward the door. I have to turn around when the bars end. Turning is ridiculous. Ryan watches and says he has pointers, but he wants to see how my body responds, how my brain problem solves. He says I’m doing better than he thought I would. I don’t know whether to feel flattered or insulted. I ask him if he says that to everyone. He doesn’t.
Every time Ryan leaves the room, I try to explain to my husband what moving in these braces feels like. Everything is stiff and robotic, but also unsteady. “How does anyone learn to walk in these things?!” I wonder aloud. Let alone do anything else?
I’ll probably need to use the poles for the first few months, Ryan tells me. How do they feel, he wants to know.
“Right now, it feels impossible to function,” I answer truthfully. Ryan might have been surprised at my bluntness (perceived negativity?). He tells me to take them off and see what it feels like without them.
It feels lighter, roomier, like I no longer have casts on my feet. It’s a relief. Am I shuffling and swaying again? Apparently. But I can’t tell because it’s the way I’ve always moved.
“You’re here for a reason,” Ryan says. “Because you want something different. I’m trying to give you a different way of moving. It’s going to take time.”
I know all of this, but I cannot see years into the future. How am I supposed to decide whether or not to move forward and get the real devices based on this? I will have five days of training upon “device delivery,” when I come back to the clinic. How much can my body learn in five days? Before they send me back home to my own physical therapist who’s never heard of the ExoSym?
I get myself back into the braces. Walk up and down, trying to move faster, take bigger strides, remember my core. Everything is loud and clunky. Very aware that my feet are not on the floor, but inside a layer of hard plastic, I do not feel grounded, literally. I take a moment to just stand, handsfree. I can lean into the braces, into the cuffs below my knees. They hold me up, and I do not start to bend toward the ground. I lean forward, side to side. I do not lose my balance. “I’m standing,” I acknowledge. “I can’t do this without them, right?” I wonder, continuing to lean and experiment. “But how do you move? How do you pick something up? Or get up from the ground?” I try taking steps without the poles, but my body isn’t strong enough. My thumbs/hands are already starting to hurt from how much I’m gripping the poles, depending on them. I make my way outside the parallel bars and my husband holds my hands, higher up than the poles. This feels better. He is strong and stable, so much better than a pair of wobbly sticks.
I’m wearing my Kindness Elephant shirt designed by FootlessJo for some good vibes today.
Ryan encourages me to go out into the gym. I walk up and down a textured mat-pathway once or twice. “You should use a light touch with the poles,” he says. “Can you do a light touch?” I know I’m not supposed to be gripping them so hard. I cannot do a “light touch.” He can tell I’m trying. I am tired. My right heel is starting to hurt/burn. I feel done.
I make my way back across the gym into the walking room. I’m proud of myself for going out there. No one else was there. But I had elected to stay in the walking room the first time Ryan asked if I wanted to go out into the gym. I know if I’m going to do this that I’ll be facing lots of uncomfortable moments.
Safely seated, I tell Ryan about the painful callus on the bottom of my left big toe. Yes, he could put padding there in the real devices. “It should slowly disappear over several months, but we want it to be comfortable until then.” A $20,000 fix for toe pain? Sign me up! But really. My toe becomes excruciating because I land on it foremost, with every step. When he says the callus should resolve itself, what that means is that I will be walking differently. My gait will be different. I cannot say how that will affect the rest of my body, but it will. So I have to do this. I have to find out.
Here is my favorite moment. I told him my right heel was feeling pain and pressure. I pointed out where it hurt. He felt it and then he felt inside the brace. “Oh, there’s a little bump here. I can smooth that out for you. Feel it.” Sure enough, there was a tiny, but significant, bump in the plastic that I had been standing and walking on for two hours. Triumph! A pain, a reason for the pain, and a solution to the pain. Do you know how rare that is? How satisfying? How reassuring?
Just an hour or two after we left the clinic, I felt a new soreness that I couldn’t remember feeling before. Same amount on both sides. I thought it might be the gluteus medius, the ones that I needed to strengthen. I looked it up, just to make sure. Yes, these muscles were sore, but not in pain. Just using the test devices for two hours had forced my body (without my conscious effort) to use the new, “correct” muscles.
So here I am. Knowing that I have years of work ahead of me. No way of knowing the outcome. Right now, I feel more disabled in the things, yet I am supposed to believe that they will help me feel more able than ever before.
Goals before trip number two, when I will receive the real devices (in a few months):
-Learn to use trekking poles (with a “light touch”)
What Happened to Your Legs? 