I’ve seriously been falling down on the job with this blog. At first I took a bit of a mental vacation and then a physical one. My lengthy hiatus from blogging is the result of a number of factors: workout inconveniences, an injury, and a new focus on mind training as well as body. Of course, none of these constitute a good excuse.
We’ll just skip over all the excuses about how abysmal I’ve been at blogging in 2011, ok? It’s embarrassing, frankly.
But I wanted to direct anyone who hasn’t completely given up on me to this phenomenal story in the New York Times:
This article reduced me to tears in my cubicle. Straight up. I realized that I had been avoiding this blog, you all, and my mission because I was trying to force myself to accept my limitations. I was trying to force myself to accept that my athletic pursuits could only ever be therapeutic—never for leisure or pure pleasure. I’ve been trying to accept that I should give up on ever running, riding a bike, or learning to box. I was trying to be content to embrace fitness merely to maintain function and stay strong. And I was failing, miserably. The envy was just about killing me—watching other people run their first 5K after a month of training, take up rock climbing for the heck of it, or embark on a century ride because they can.
Reading about this dude, I am deeply ashamed of myself. Seriously Bee? You’re going to complain about the limits other people put on you while erecting huge stumbling blocks for yourself? So you won’t ever be able to do things as easily as many people. Big freaking deal. Since when has that stopped you? Get over yourself already. Your way has–by necessity—never been other people’s way. And your way has gotten you pretty far in the world. It’s not been the easiest way, or the most elegant way, but you got here didn’t you?
Do yourself a favor, wait until you actually *hit* the roadblock before stopping, ok? Limits are for pushing, defying and generally ignoring. . .New training regimen as of Monday—complacency is off the menu.
For the past couple of weeks I’ve been indulging in some hard core geekdom and my “nerd file”, filled with research papers is getting fatter and fatter. Horrifyingly enough, it makes me yearn to go back to college for a—gasp—4th degree. Because, you know, the perfect compliment to an English BA, a creative writing masters and a library science masters is a degree in exercise physiology. Relax, Mom and Dad, I won’t be quitting my job any time soon. I suck too much at math to study anything technical. But to indulge my nerdy side, I’m resurrecting a research feature here in my own virtual fifedom. The goal is to spread the word about research relevant to this blog—CP research, exercise research, obesity research, etc., and to allow me to pontificate and gush about the geeky stuff I read. It’s my soapbox, after all. 
So this week’s read was: Neural plasticity and treatment across the lifespan in motor deficits in cerebral palsy by George F. Wittenberg, MD, PhD.
Despite the fact that most fitness experts will tell you that long-haul cardio is generally a waste of time, I often put in one or two hour+ sessions a week. My body seems to like repetitive motion, a lot. After an hour on the eliptical, the stationary bicycle, or the treadmill, the spastic muscles in my legs have generally given up the ghost and walking home feels more like gliding.The last three days were pretty amazing, physically speaking—as is usually the case immediately following my botox injections. And, as per usual, today some new aches and pains have cropped up. I’ve learned that for me, this is 100% normal—my posture is shifting thanks to an additional stick in my right hip and some muscles that haven’t been working are being recruited to keep me upright. So they’re a bit pissed. This time, instead of freaking out, crying and sending PTE a panicked email, I just went to the gym. I canceled my planned lifting session and just did some steady-state cardio for an hour or so.
There’s something about repetitive, low-impact cardio that clears my head, makes me feel sane, enlightened, capable. When I want to think and think constructively, the gym is where I go. I’ve said here before that my new goal for this blog is to encourage other people–no matter what their struggles are– to become involved in, and invested in physical fitness. But I’m going to admit right now that I feel like I’ve hit a mental stumbling block. I’ve been feeling discouraged and like it might be a fruitless endeavor. . .or some sort of self-congratulatory exercise. So I went to the gym to think on it. Read more…
So it’s the day before Botox, Round I-Have-No-Idea-What-Number, and I feel freaking phenomenal. I keep thinking that by now I should feel like the drugs are wearing off. I keep waiting for the back pain to come back, or for my calves to feel like they’re in a vice. Or to fall on my face and get some fresh road rash. Something that let’s me know that it’s time for a top-up. Funny thing is, I feel really really good.
Sure there’s some occasional tightness in my glute med which has been working hard lately to get rid of some of the remaining scissor-gait and internal rotation of my thigh. But I’ve been able to manage that with strategic long-haul cardio and stretches. And some days, particularly after a long day of sitting, or a hard day at the gym, my left hamstrings get angry (ok, livid might be a better description), but a couple of hours in my oh-so-stylish AFOs (ankle-foot orthotics) and they usually chill out. I feel so good that it scares me.
So I’m still going through my contemplative quiet time—yeah, I know, ME quiet? Something must be out of sync in the universe. I have about three volume settings: not-so loud, let-me-make-sure-everybody-noticed-me loud, and yeah-just-try-to-ignore-me-I-dare-you loud. This is particularly true if I’ve got a bee in my bonnet about something—and clearly I’ve got a swarm going about CP, fitness, access to care, etc. Actually, truth be told I’m spending this time using my mad librarian skills to build a bibliography. It’s a list of studies and resources on CP research (particularly CP and exercise), disability and obesity, barriers to fitness/patient treatment compliance, and muscle growth in folks with brain injuries. So I promise I haven’t abandoned this blog or this project. And of course, my personal fitness quest continues, as do the Botox treatments—I feel great for the most part, I’ve got zero acute pain 99% of the time. Some days I feel so grateful it hurts—and I spontaneously burst into tears.
I’ve been really quiet for the last 7 or 8 weeks. I’ve logged into this blog a number of times to begin a post, only to abandon it half-way through. I’ve abandoned these drafts not because I haven’t had anything to say, but because I’ve had a hard time saying something cohesive and coherent. I’ve been doing a lot of research on cerebral palsy and exercise, putting my mad librarian skills to good use, and making good friends with PubMed. So far, I’ve found more articles than I expected to find but fare fewer than the incidence of CP in the population (2-3 out of every 1000 live births) would indicate their should be. Still I’m gratified to find out that there are some folks working in the field who care about this issue and are working hard to change the way CP is treated and managed.
I had an entirely different post planned for today. It was victory post about how well I’m doing and how proud I am of my progress thus far.But it’s being pre-empted by a moron I met on my way home.
On the walk home from a party this evening I was reminded that no matter how much work I put in to this endeavor, no matter how much progress I make, I will always be perceived as different from other people. And there will always be some people who will consider me inferior because my body does not work like or look like theirs.
So the first year of this project–which is about to come to an end–was all about me. For good or ill it was an exercise in navel-gazing, self-study, and self-scrutiny. It was a year spent isolating and building muscles, learning new skills, and relearning old ones—including how to walk in a more efficient and less painful way. It was about getting to know myself again—without the psychological and physiological static of chronic pain—and becoming acquainted with the person I always hoped I could be. There’s been a lot of hard work, some of it physical, but much of it emotional and psychological. It was a year spent exorcising some demons, confronting others, and making friends with a few more.
It’s been an awesome and inspiring experience–taking control of my life and learning to find joy in it again. For me the pursuit of physical fitness has absolutely been the means of empowerment And in year two, it’s my goal to share this experience with as many people as possible—starting with people like me and moving on from there. I’ve got it in my head (and my heart) to bring the fitness bug to folks have been traditionally disenfranchised from fitness culture.
Read more…
Just a quick note to say: apparently I’ve still got it, I’m still kicking it. According to my osteopath and PTE, the pain I was experiencing was likely a direct result of increased range of motion in both hips. Boo-ya! Normal standing posture—no lordosis, or increased curvature of the lumbar spine—for the first time ever! Boo-ya! What I was feeling was not the old wonkiness settling in my SI joint, but a new and different weirdness, thanks to progress. . .my friend progress, how I’ve missed you so!
Moral of the story: Sometimes even the best boxers end up hanging on the ropes. So even if you’re feeling more like the punching bag today, remember that tomorrow you can come back swinging.