By: Coach Rachel
In my former blog post (which you can read here) I talked about my diagnoses and how CrossFit has helped me through my life with them. But what I didn’t mention, was the journey I’ve taken to accept myself as an athlete with these diagnoses, as an adaptive athlete. When I started CrossFit in 2014, I didn’t even know what an adaptive athlete was, let alone that I am one. I never really talked about my conditions because I felt like they made me weak and I hated showing weakness. Truthfully, no one in my gym knew I had them except for the owners and I didn’t tell them until I had to. Little did I know that by not accepting the fact that I am adaptive athlete, I was only hurting myself.
An adaptive athlete is someone with a permanent impairment of some kind. Often times, there is an outward or visible sign of the athlete’s impairment. I think this is what took me so long to identify myself as an adaptive athlete. For myself, there are very few visible impairments of my illnesses to the untrained eye. (I say untrained because someone who has studied gait analysis and joint movement in depth, may pick up on some of my fun party tricks, but most go undetected.) On the outside, I look healthy, strong, normal (whatever that means). But underneath all of that, my muscles are working overtime to make up for my loose ligaments, trying desperately (and failing often) to hold my joints in place; my brain is now being held in its rightful place in my skull by a titanium mesh plate and screws; my stomach being helped in its job of digesting my food, to help me get stronger, by being told when to empty, through gastric stimulants. The constant daily routine to keep you going. In a perfect world, I would love to not have to do all these things everyday, but these are the cards I’ve been dealt, so I’m going to make the most of them. There’s a silver lining in everything, and the silver lining today is getting to share my story.
So if I don’t have a visible impairment, then what is my impairment you may ask? What makes me adaptive? This was a question I kept coming back to myself after my second brain surgery, when I struggled to understand why some movements were causing some symptoms that I didn’t understand. You see, before my first brain surgery, I didn’t consider myself anything but an able-bodied CrossFitter (a CrossFitter without an impairment). Even after my first surgery, I thought that I was more of a scaled athlete of sorts, but I didn’t consider myself to have a permanent, life-lasting, impairment that qualified me as an adaptive athlete. I went months without answering this question. It wasn’t until I attended the CrossFit Speciality Course: Adaptive Athlete Training that I finally understood and I had an answer.
I am an adaptive athlete, but I don’t fit neatly into a category. I’m not a seated athlete, an upper body impaired athlete, or a lower body impaired athlete. I’m unique. I’m a genetically impaired athlete, you could say. My genes are mutated in some not good places, impairing my brain and my collagen, affecting my entire body. So then how does my impairment manifest itself? How does it affect me? The truth is, it’s different every day. But in general, what this means for me as an athlete is the following: I have to be careful with lifting heavy, no holding my breath, avoid jerking motions, getting inverted is a no go (for now), head/ neck positioning needs to be mostly neutral, and anything that causes symptoms is out. I learn new things about my body every single day. But I’m just now learning how to accept all of these things to be true.
This is a whole new world to me. It wasn’t until after my first surgery that I even began to understand that what I felt when I was performing CrossFit workouts as an able-bodied athlete, wasn’t even close to normal. I just thought that everyone felt what I felt, I mean, isn’t CrossFit supposed to hurt? Don’t we go to the pain cave everyday? I didn’t know that this was the self destructive thought that would lead me to where I’m sitting now, recovering from my third brain surgery.
Recovering from my first brain surgery was a long, rollercoaster of a road, but after just 14 weeks, I went back to CrossFitting as an able-bodied athlete. However, throughout my recovery, I repeatedly became sick with Aseptic Meningitis, which basically meant my brain was not happy with the bovine (cow) heart patch that was used to make my brain covering bigger, so it was time for brain surgery number two exactly 4 months after the first. It took me 4 months to come back from the second surgery, but when I was back, I was good to go I thought. My surgeon had cleared me for everything except handstand push-ups because they removed some of my C1 vertebrae and my skull so that was a little too risky. I was fine with this and went back to CrossFitting with a little more hesitation this time, but mostly as an able-bodied athlete, just scaled if you will. I moved slower, focused more on form, didn’t take as many risks as I used to, and stopped caring at all about scores, times, or competing with anyone but the new, post-brain surgeries version of myself.
This went on for another 4 months, until one day, I drank too much of the Kool Aid. I felt good, strong, the best I ever had, I had been headache free for 4 months, I thought I was normal, able- bodied. So I went for a 1RM clean. I went the heaviest I had in over a year. I matched my lifetime PR. And I started a chain reaction in my body that I didn’t know I would never be able to undo. The feeling of hitting that pr is indescribable, but it wasn’t about the pr- it was because I felt so able-bodied. I felt like I could do anything and everything. I wanted to feel that way all the time, I wanted that sense of normalcy in my life. And now I knew I could get it at the gym, so every day I wanted to push myself further in everything- go faster, add an extra pound or two, hit another rep, etc. I didn’t even notice when I started pushing through the pain cave again. That was my zone, that was where I thrived. By the time I realized it and started to listen to my body, the damage was done, and boy had I done a number.
It wasn’t until after I attended the Adaptive Athlete Seminar, as I was driving home from the incredible day, that I had the lightbulb moment that I was pushing through things that maybe I shouldn’t. This was also the day when I first realized that I was an adaptive athlete. I didn’t really know what it meant then, but it’s clear to me now. The next day I started the long journey of figuring out what exactly I was pushing through. The answer took months and many tests to find. Apparently, it’s not very common, but my brain actually fell out of my head. The technical term is Cerebellar Ptosis but essentially it meant that all that stuff I was pushing through was actually doing damage. My brain couldn’t handle the pressure increase inside my skull when I would lift heavy or raise my heart rate high or quickly elevate my blood pressure among other things, and overtime, it pushed itself out into the space where my skull was removed in the first surgery, causing all my symptoms, and bringing me to brain surgery number 3.
My brain is now being held where it belongs with titanium mesh, screws, and my strong neck muscles (thanks CrossFit!). But looking back, this could’ve been avoided and I only have myself to blame and nothing to do but learn from it. The lesson in it is this: Acceptance. I didn’t want to accept that there are just some things that I should do differently or I shouldn’t do. I wanted to feel normal. But what is normal? The reality is, this is my normal now.
I will forever have a titanium and screws in my head, my collagen will always be lacking, my genes will always be what they are (at least as science stands now). And I have one choice: accept it. So, I accept the cards I’ve been dealt, I accept the choices I made and I don’t regret them. I accept my new normal. I accept that I am an adaptive athlete and that when I get back to CrossFit, my workouts will look different. But I know that I will get back because I know that there is always a place for me in the CrossFit community and I know that I’m ready for the unknown and the unknowable. I can just adapt and overcome.