Earlier this month, I was fortunate enough to travel to Gig Harbor, WA to get the Exosym, a set of orthotic devices that completely change the way I move through the world, literally. Find out more about the Exosym here. For me, getting the devices came a year after discovering them, in which I applied, was approved, saved all my pennies, crowdfunded almost $12,000 over the course of several months, connected to providers and friends and others who have the devices, and dedicated myself to PT to prepare.
From the beginning I was told that if I wanted the devices, I would need to commit myself to a year or more of dedicated physical fitness and allow space for a sharp learning curve in what my body can and can’t do. Others with Cerebral Palsy refer to this period as ‘relearning to walk’. But what does relearning to walk at age 21 actually entail, and why are the results not as stark and immediate for me as they are for patients without CP? As you saw in the link above, the brace functions as an ankle brace with a strut system that diverts strain from one’s leg and repurposes that energy into one’s step.
For me, the panel on the front pushes my knee into complete straightness, an idea previously unfathomable, as Palsy kept my left knee in a permanent partial bend. Most who are correcting an injury as opposed to managing a congenital condition wear just one or two braces for pain management and stability. Myself, as well as some other patients wear two of such braces, as well as “knee sections” that attach to the lower brace and strap onto the backs of my legs with velcro. While everyone is different, it’s safe to say wearing all four pieces is rare within the community of Exosym patients. The knee sections provide increased knee stabilization, and act as a propulsion system, lifting me as I go from a seated position into standing, or up one step to the next. Part of the learning process is acclimating to standing straight- when I stand up, I can feel the devices pushing me into that final upright position beyond where I would typically hold myself in space. It’s like the last groove of a key fitting into a lock just before it turns. Another piece is allowing the rhythm my steps fall into when walking independently to naturally take place. There is an uncharted smoothness; a newly accelerated speed that if I’m not careful to regulate can read like a kid on a two-wheeler who doesn’t yet know how to use the brake. Most notably though, the whole system together elongates my entire posture, holding me up in an alignment that is closer to what is typical. No longer is my torso leaned forward over my hips, but sitting above them. My neck is longer, my shoulders back, and of course my knees are straight and my ankles supported, so I stand firmer and weight bearing equally between both feet is no sweat, where I previously sat in my hip and my right foot did 80% of the work of holding me.
All of these changes directly contrast the routines my body created over the last 20 years. With that comes growing pains, so to speak, as my body and brain scramble to reconcile this new, forced alignment. My back is over arched or hyperextended which contributes to back pain as I walk. My spine is like a piece of paper that was folded with a crease in one direction, which was then folded in the opposite direction to straighten it out. Now the paper lies relatively flat, but the creases are all over the place, leaving an awkward flex. The solution for this “flex” is integrating an arc in my back to address the hyperextension. But constantly forcing a change in one’s spine is awkward at best, and near impossible while walking and then of course having to think about other things.
The other piece that results in back pain, and the real determinant in how much I glean from the devices, is strength in my core and glute muscles. Ideally, everyone should support their movement from their core. When folks have joint issues later in life, it’s often a result of said joint(s) overcompensating for a lack of core strength or intentional engagement of that muscle group. This is to say that if someone needs a hip replacement, one likely cause is a formation of a habit earlier in life where they lift their legs from their hips in the absence of proper core strength. When thinking of if my core is “strong enough” it is only in proportion to my own body weight and mass; the goal is not a six pack or a certain number of crunches, but rather, an adequate amount of muscle engagement to support the movement of my legs with the added weight of the devices. So my process has to be two fold: strengthening my core muscles as is with a series of consistent exercises, but then also creating new “brain patterns” to eventually automatically engage my core while moving. Furthermore, my gluteal muscles were developed in a shortened position because of my aforementioned “bent forward” posture. They contorted to accommodate the way I stood, so although they actually became quite strong like that, now all three lengthened in a way that mirrors what is typical because of my straighter stance. Just because they were propped up correctly via a super-imposition doesn’t mean they can actually function like that all of a sudden. Again, there is a neurological retraining process, because my brain was only engaging in a limited way in part to fit the specifics of other effects of Cerebral Palsy. That remapping of the brain is the real work, because creating new habits when there’s already an existing, now inadequate neural pathway in existence for two decades is starting from scratch in a way that can only be compared to babies establishing their gait patterns the very first time they’re learning to walk. So to babies everywhere: engage that little core!! It’s easier to do it right the first time. It’s worth mentioning that this is actually my third time going through the process of learning to walk. My first was at ages 4-6, and then I remapped again at age 14-16 when I had a series of complex corrective surgeries.
The process of engaging all these muscles is complicated for someone with Cerebral Palsy in a way that is not true for a neurotypical person, because by definition, Cerebral Palsy is the misfiring of brain signals to the muscles. So trying to isolate muscle activity, much less force change against what a particularly stubborn brain has already established, is near impossible because you are working against misfirings and increased muscle tension (see: spasticity). This can manifest similarly to paralysis, where I have no idea if/when I’m engaging my muscles, or how exactly I’m supposed to make that happen, unlike how I “know what to do” to make my hand into a fist. In contrast, a person with typically functioning brain signals who puts on the Exosym comes in on day one with closer to typical posture, at least somewhat- developed muscles, and the ability to feel them flexing. By way of Cerebral Palsy, I can count the times my stomach or butt has engaged in a way I could feel over the span of my entire life on one hand. Because balance, coordination, and the ability to mobilize is all reliant on these muscles engaging simultaneously, neurotypical folks often strap on one brace and are literally off and running; the neural pathways they had set before the injury or onset pain condition come back to them without having to rewire much beyond acclimating to the sensation of the imposition of limited ankle flexibility. You can place abled alignment on a girl with CP, but you can’t actually take CP out of the girl. Spasticity, compromised sensation in locating my muscles, and muscle weakness resulting in poor balance are always going to be parts of my reality, though the brace now enables me to reach more within these limitations if I very deliberately address each one. I can have increased strength and balance, but that is while I’m unable to feel what’s going on, or engage on command.
This is the only part that made me cry in my two weeks training at Hanger Clinic. I stood with a resistance band strapped to my waist, attached on the other side to a planted apparatus behind me. I had to stand up straight while pushing against the bands pull, the only option to squeeze my butt to hold myself in a standing position. The trainer was watching my backside, saying “there you go” or “you lost it there”; “squeeze squeeze squeeze!”; “Oh, you just disengaged.” I grew frustrated quickly, because it was total guesswork on my part. I had no idea whether I was engaging the muscle or not, and his praise or critique felt entirely random. He was cueing me in the hope I would know what “correct” felt like, but that approach was rendered meaningless because I couldn’t feel anything. How was I ever supposed to intentionally use the elusive “glutes” to my advantage while moving my legs, if I couldn’t even feel a single squeeze while standing still? I felt embarrassed to be 21 and not know parts of my own body. I stood there, still pushing away from the band, growing tired as anything near a result felt further than ever. And what if this was just the way it would be, never able to feel a muscle that everyone else knew was there? Was back pain just my lot in life? I started to well up.
The trainer and the inventor, both of whom I worked closely with were patient and understanding, assuring me that eventually I would have more control. Even if, like others with CP, I can’t actually feel the difference. Like so much of this process, this concept of improvement that I may or may not be able to locate for myself is difficult to intellectually understand. But they are the experts who I continue to place my trust in. So I composed myself, and tried for my that muscle movement a little while longer. Eventually, I did feel the tiniest movements towards the top of the back of my thighs, and just like that, I knew I had a chance. I took the band off and had some water: I could relearn, but if this was a victory, then and only then did I fully understand the extent of the endeavor I had just embarked on, and that I was really truly starting all over.
Just in case new posture, accelerated steps, and discovering and building muscles I didn’t know I had the capacity to control weren’t enough, there is also an element of quite literally learning new foot placement, breaking down the mechanics of actually putting one foot in front of the other. It’s imperative that I walk heel toe, heel toe on flat ground; a pattern that comes more naturally to me on my right side then on my left, which creates the illusion that my step is in correct form even if my left heel stays just slightly raised off the ground. But then the rules change again on inclines, where I must walk on my toes on even the slightest uphill, and rest in my heels going down. And of course, there are rules for steps and turns that I previously didn’t ever have to entertain: to go down steps, the foot that follows behind the other onto the next stair has to hang half way of the step before I can go to the next, otherwise I could seriously injure my knee due to how I am held by the knees section. Where I used to nearly skip down foot over foot, my eyes are fixed on where my following foot is, and I have to stop and readjust with every step that I couldn’t throw my foot far enough out on the stair to reach over the edge. Similarly, I cannot turn my whole leg and torso to change direction in one movement, but must instead take about 5 tiny steps with both feet, so as to avoid twisting my knee within the brace.
Arc your back! While squeezing your core! And your butt! That you may or may not be able to feel! While picking up your legs and moving forward! That now have five extra pounds attached to them! Walk heel toe! On your left too! Unless you’re on a ramp, in which you must get up and stay up on your toes! It’s a lot to remember, and currently impossible for me to do all at once, resulting in frequent falls and frustration. This is up against the backdrop of my loved ones who don’t necessarily know that I’m thinking of all these details, but instead are romanced by the already evident improvements in posture and energy. Such a dichotomy is complex, because the encouragement is nice to hear and well intentioned. And it is impossible for everyone to understand everything, nor is it my responsibility or wish to censor people’s words or reactions. But that doesn’t change the imposter syndrome I am experiencing as I get used to being outside of the controlled environment of clinic, constantly confronted with my new inabilities and the dangers in navigating the world as it is. Right now, I often don’t know the answer to “What do you need”, which I’m realizing is an awareness the abled people in my life previously took for granted. I knew myself so well, that in almost every physical circumstance, I had an answer. Whereas now, at least for the moment, I am just as in the dark as abled onlookers, figuring it out with a sometimes risky game of trial and error.
That experience within itself is a good reminder that I actually don’t have to have all the answers, and that the expectation is a side effect of an internalized need to be SuperCrip. Also flying in the face of such a persona is the the fact that it’s taking me much longer to connect with a PT than I had planned for or anticipated, and I fall into a self consciousness surrounding everything I’m not yet doing. I’m trying to give myself grace here, reminding myself it is just three weeks into my first year in the devices. I’m lucky to have friends and family who are supportive of what the journey is in reality vs. expectations, and I am hoping I can embrace that difference as well.
I wrote this post with the hope of giving you, reader, more context as to the specific challenges of what some arbitrarily view as a curative measure. My Cerebral Palsy cannot be cured, nor do I ever want it to be. Nothing is that easy, and we all have to push against urges to simplify or dismiss the complex realities of physical disability and medical experiences. I am as excited about this moment as you are. If it doesn’t always seem like it, it’s because I have a lot to learn.
Today, this is where she stands.