Sunday, November 2, 2014

Someone you know might be skating with a disability

Just because someone is skating with an impairment, doesn't mean that they can't be an effective derby teammate. I'm still surprised by the attitude from the New Zealand coach to not skate a hearing impaired skater because she was worried that her team didn't need the extra stress of learning sign language.  Seriously folks, we're supposed to be one of the most inclusive sports in the world, and we need to work on being aware that just because someone has a disability, it doesn't mean they will be weak on the track.

By Hillary Boswell

I’m writing today about what it’s like to skate with a disability and to ask you to consider, that in a
Photograph by Mike Trottier
sport that is inclusive in its very nature of women and men of all sizes, strengths and ambitions, that you think about how skaters with disabilities might fit into our sport.

In order to understand a skater with a disability, we first have to understand what a disability is.
“Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.”*1

I have been diagnosed with Chronic Compartment Syndrome – a relatively minor disability when compared with an amputee, blind person, or even someone restricted to a wheel chair. But not all disabilities are obvious. Someone with diabetes, asthma, IBS or epilepsy, all suffer from hidden disabilities.

“Compartment syndrome (CS) is a serious condition that develops when pressure within blood vessels (perfusion pressure) drops lower than tissue pressure within a closed space (compartment) in the body. CS can be either acute or chronic and can be limb- or life- threatening condition”.*2 To describe it to people who don’t know how it feels, imagine that your shin muscle is a blood pressure cuff and skating, is the same as pumping it full of air. Eventually, the cuff gets so tight that it allows the doctor to measure your blood pressure. Now imagine that the pressure never deflates unless you stop skating. You have to completely cease using those muscles in your leg until the pressure begins to deflate. If you don’t, you start to experience dead foot with no control over your feet, you teeter like someone who can’t skate. The shin becomes painful, sore, hot, swollen from the pressure. In the same way weight lifters can physically see a swelling of their biceps when doing curls (biceps feel hardened, blood flows through them) a skater with CS can physically see the skin stretch, get hard, shiny and hot to the touch. Now imagine someone telling you to “skate it out, skate through the pain”. This is where things can get ugly. Chronic CS can quickly move to Acute CS which is considered a medical emergency and requires surgery to cut the fascia between the calf and shin muscles in order to alleviate the pressure that has built up. Failure to do so, results in necropsy of the muscles.

My journey with CS began in my rookie year of derby, 4 years ago. Trying to obtain my 25 in 5 was torture. I couldn’t explain how I could keep up with everyone for everything else, but when it came time to skate for 5 minutes straight, I was lucky to make it. I had the gas but not the legs. Indeed, I barely made my 25 and I still think the senior who marked me, gave me a mercy pass since I basically crawled across the finish line. I knew it was my shins but everyone kept saying it was just shin splints and I just needed to skate through it (that’s the worst thing you can do for shin splints by the way). Anyway, I tried physio, taping, shin stripping (a terribly painful procedure which did nothing for me), and massage therapy. Fortunately for me  my physiotherapist’s interest was piqued in both my plight and the connection to roller derby. She did some research and on our last visit, she told me “I think you have CS and should go to your doctor.” So I trudged off to my doctor who sent me to a specialist. He confirmed her suspicions and sent me to “his” physiotherapist for electromagnetic stimulation of my shin muscles – again, no marked improvement whatsoever. So now what? We all knew I had CS but to what degree we needed to ascertain. The testing is only done in the next province and is a painful test involving needles inserted into your shin muscle before, during and after runs on the treadmill – if I tested high enough, I would be eligible for the surgery required. In the mean time, a study was being conducted at the University and would I be interested. It involved the use of ultra sound to diagnose – a non-invasive procedure a procedure I very much liked the sounds of. The study fell through and to be honest I’ve never pursued the out of province testing. The one thing that stands out that all of the medical people said at one point or another was this: how badly is this going to affect you? Is the surgery going to be worth it or can you make due without it? How does this disability affect your life?

I was struck dumb. The thought that this was something that I couldn’t control – it’s just the way I was born – was a bit of a revelation. It wasn’t effort at practices holding me back. It wasn’t that I wasn’t trying. I had just reached the limits of my body’s capabilities. Suddenly I realized exactly what it meant to have a disability and what a struggle some people have in their lives. This was a small inconvenience for me, that affected me mostly only at roller derby. I was overwhelmed with the thought of someone living with a much worse disability 24/7 and suddenly felt an empathy I hadn’t considered before now.

By the time I was finally diagnosed, I was well into my second year and now training with the all star travel team as a recruit. I thought if I was found to require surgery and had it, I would miss out and fall behind and never make it onto the team. I made the decision not to go ahead with it and just “mitigate the risks” – sit out of drills as needed.

My daily life is affected in that little things like running for the bus, or sprints in Crossfit WODs flare up my shins. Some days it’s so bad they ache for hours after a really grueling practice. A particularly good tune on the radio that gets me unconsciously tapping my toe at my desk, wears my shins down enough that I will eventually notice and have to stop. I will never be a runner – even though I think I would like to.

Now, how does this affect me at derby? Simple things that others take for granted like shuffling side to side, fast feet, 2 minute jams,  the 5 minute skate in WFTDA benchmarking, really any endurance drill that requires high intensity skating for prolonged periods of time, all blow my shins up and require modifications. Does this stop me? Hell no it doesn’t. Instead of shuffling, I do it on my toe stops, endurance drills become an exercise in modification. If we do the intense fast to fastest drill where you skate two laps as fast as the leader can, with one cool down lap – I have to stop skating for the cool down lap. 2 minute jams require extra perseverance and careful use of energy expulsion, no gratuitous hitting. Some drills are so strenuous I cannot complete them – or if I do complete it, I know I will have to sit out a portion of the next one in order to allow my shins time to deflate.
Mentally it’s a bit tougher to deal with my disability. For one, and especially for a competitive type A personality like me, to admit that I’m weaker than you, is tough to do. To know it and to see it every single practice, for lack of a better term – sucks. But, I’ve never been a quitter. I’ve got nearly perfect attendance at practices, I work hard at every single practice, even if I’m facilitating. If my shins force me to sit out for a drill, I don’t sit on the sides and gab, I remain engaged in the middle of the track and focus on the instructor and my team mates and try to see what is working and what isn’t working. Still, it’s hard to tell if that look on my team mate’s face is a silent complaint of laziness or one of genuine concern. For the most part, my league and team mates have been incredibly understanding and accepting (the few exceptions are simple ignorance). In fact, I think more than a few would even be surprised to hear that my CS has been diagnosed as a disability. For the few – my closest friends – who have educated themselves and freely ask questions, their understanding, empathy and refusal to accept anything less than my best, has been my saving grace. Their words of encouragement when I needed them most, are what I rely on when things get really rough. CS is not an excuse, it’s a challenge to work around.

I’m now a senior member of our travel team and I think I would be safe to say I’ve had success as a double threat. CS rarely gets in my way these days although a large part of that is the way the game has changed. The other equally large part is that I’m stronger. My muscles have adapted and while it will never go away completely, you CAN strengthen what you have and I think I’m as strong as I’ll ever be. Crossfit has helped a lot. So has the unconditional acceptance from my team and leaguemates.

I don’t want to apologize for my disability, I don’t want you to make concessions for me or expect anything less of me. I can do everything you can do, I just do it a little differently or take a little longer. If you give me that chance, I will give you everything I have. 
In my curiosity and research, I came across this article which discusses women, sports and disabilities. It’s a great read: http://www.un.org/disabilities/default.asp?id=1563


7 comments:

  1. Thank you for writing this. It's exactly what I've been going through. I've been so discouraged and feel pretty useless most of the time, but I can't seem to throw in the towel.
    I searched the web and found a skater that had the surgery. It was successful, but it's not an option for me at the moment.
    I'm trying to compensate by building up other muscles (core, inner thigh) and just hope for the best.

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    Replies
    1. Keep on doing what you can, and remember that everyone has something to struggle with out there/ :)

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  2. I've had CS since early last year. I was told by every single doctor and physio that I had seen the only option was surgery. My coach, as he dropped me from the A squad, told me I had to "fix it" before I would ever be considered to be placed back on and that he felt I was only putting 50% into trainings. He didn't like being told that effort wasn't a measurable trait and is therefore not something I can improve on and I should be judged on measurable skills not made up numbers(I was bitter at that point).

    The thing that got me most was he was a PT. Someone who should know about working around someones limitations to get the best results, yet he didn't even try to understand mine.

    I've since moved to a different part of the country found a physio who specializes in myofascial release whose first words after establishing that I had CS were "I can help you". Core and upper leg strengthening to encourage me to use the bigger muscles to push rather than the weaker smaller ones, plus foam roller and deep tissue massages to encourage circulation.
    I still have bad days but I can get through most trainings without stopping once to let my leg settle down.

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    Replies
    1. Good! I'm glad you found a place that will help your condition!

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  3. I was diagnosed with CS about 10 months into derby. Thankfully, being in the sports medicine field, I had knowledge and contacts that are not always available to others. Still when I was struggling to meet my attendance, difficulty getting through a single hour of practice, and felt CS starting to flair up in everyday life, I started to explore the surgical route. PT and myofascial release techniques allowed me to struggle through a month to make attendance that would allow me to take a LOA but it did not impact me enough to be a viable solution. I spoke with a specialist, had the test to confirm CS (resulting in a pressure rating almost 3x the baseline to diagnose CS) and scheduled my surgeries. The right leg was operated on in November and the left in December. I was back skating on February. I realize now that I did push the envelope a little when I first returned but it really did feel like someone had flipped a magic switch. The difference of then to now is incredible. Occasionally, I have a bad day or practice where my shins bother me (typically above or below the incision sites where the fascia was not released) but it is no where close to how it used to be. I wear runner's compression socks overnight on practice nights, and occasionally compression sleeves during some practices or workouts, but I think that's hardly a hassle of an accommodation for how my legs feel. I understand that surgery may not be an option for everyone with this condition but I strongly urge you to discuss it with your specialist. It was absolutely worth it for me and I would do it again, sooner even, to save me some of the agony I felt during that first year of derby.

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  4. I was diagnosed with Chronic Exertional Compartment Syndrome 2 years ago. I still have not been able to find a surgeon and/or a strayer (spelling?) machine in my state to really get into my surgery options. When it comes to non-surgical options, I've been through the gambit. I find the whole thing very frustrating but have never thought of it in the context of a disability. It's a different perspective that I hadn't taken into consideration. So, I'm glad you're putting this out there. Many people in derby are not aware that this is a possibility in their athletes. Trying to "push through" early on in derby, not knowing what was going on resulted in permanently numb spots in my legs. It's hard wanting to give your all and not being able to. I get more upset mentally by not being able to stay out on track than by the physical pain. I still feel horrible about having to leave the track to let my legs depressurize. I think it's important here to stress that this can lead to some big time bad stuff. If someone pushed too hard with this condition and didn't recognize what was going on in time to receive an emergency fasciotomy... it could lead to cardiac arrest and death.

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