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:
The Last Iron Man.
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.
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…
I’m still in a funk, my back still hurts. I’m still really angry about it. But at least I’ve stopped crying in frustration each time I think about it. So today, I’m determined to be a little less pissed off—or at least to spend less time thinking about how pissed off I am.
Last week the Washington Post ran a stellar series on traumatic brain injuries (TBIs) among soldiers returning from Iraq and Afghanistan: Coming Home a Different Person. You should check it out, if you missed it. There’s also a fascinating description of how damage to different parts of the brain affects not only mobility and other physical functions, but also mood regulation, decision-making, etc. I don’t know, there’s something about understanding the exact part of my brain that’s damaged that I find intriguing—in a “know thy enemy” kind of way. The graphics here are really cool.
Read more…
This week in Dan Savage’s column Savage Love, I read about a 15-year old Indiana teenager who committed suicide recently after being mercilessly bullied for being gay. I was touched—ok, reduced to tears—by the out-pouring of support from gay, lesbian, and transgendered adults, and their friends who wished they could have told the boy, Billy Lucas: “No matter how bad things are right now, life gets better.” You can check out the video project here:
http://www.youtube.com/itgetsbetterproject
Warning: You’ll need some tissues.
Billy Lucas isn’t the only one, either—we’ve all seen the Breakfast Club, we know that bullying isn’t about the flavor of your difference, just the difference itself. There have been several cases in recent years of teenagers committing suicide after being bullied online by classmates (or even by the parents of classmates!). All this got me to thinking about the wisdom I wish I had had as a teenager or young adult about coping with being different. Read more…
Now that I’m getting a handle on my physical being, I’ve got some other messes to clean up. Since the physical pain factor has been mitigated to a great extent–I’m terrified to say that it’s completely gone, because my body has a habit of doing weird things to spite me. But Botox, Round Four happened this week—including a light slap for my psoas which I think might have tamed the last of the SI joint pain! Jury still out a little as things shift. . .but I definitely feel better. So with that out of the way I’ve been thinking a lot lately about the emotional barriers that keep me from making progress in my life. In particular I’ve been thinking a lot about the thought patterns and behaviors that unleash torrents of unhappiness, inhibiting our ability to change and optimize our lives.
Read more…
At the outset of this blog and this project, my primary goal was to eradicate daily pain from my life, and get as much increased flexibility and mobility as the Botox would allow. Although we haven’t quite got it licked yet, I’d say we’re really really close. I’m hopeful that the next round of injections, which will include two new muscles, will get rid of the pain completely (fingers crossed). So now I’m on to phase two, which is the Fierceness Campaign. This campaign is about more than dropping some body fat and building some muscle. Really what it’s about is about becoming truly proud of my body, what it does, and what it looks like.
Read more…
When I started this blog, I made up my mind that I would try to avoid getting mired in a protracted discussion about my attempts to lose weight. Frankly, there are a zillion and one weight-loss blogs out there, some interesting and constructive and others, neurotic and counterproductive. Whether I ended up at one end of the spectrum or the other, I felt like there was relatively little I could contribute to the debate. Additionally, I thought that my own struggles with weight were a distinctly separate issue from the CP–that I was merely unlucky enough to have both brain damage and bad genes.
In conversations with PTE, who works with children and young adults with CP, I learned that I am not alone in my struggle against both CP and obesity. (We have lots of time to chat while she twists me up like a pretzel.) I guess if you think about it, it’s no mystery that a population for whom exercising is often difficult, painful, inconvenient or embarrassing would struggle to maintain healthy weights. For me, as for millions of other Americans–able-bodied and otherwise–food also served as an emotional salve. I often felt lonely, isolated and bored as a teenager or young adult. I couldn’t join sports teams or go on Outward Bound-type hiking excursions to test my physical limits against nature, as was the trend in the early 90s. So like many other teenagers, I sat home, felt alienated, listened to loud, angry music and ate whatever was on offer. A lot of whatever was on offer.
Read more…
Since starting to write this blog I’ve been trolling online message boards looking for comments from other adults with CP about their experiences. I’ve never actually known anyone else who had CP. I mean, of course, I’ve met other people with CP, but I’ve never actually had any friends who shared my experiences. I thought that perhaps my struggles were unique, that it was my lack of knowledge or my staunch refusal to even try to seek out CP specialists were what prevented me from finding the help I needed.
What’s been surprising is the number of people who mention the same reticence to seek medical care in adulthood–even if it were available. It seems to me that among folks with what seems like mild/moderate cerebral palsy there is a common desire to blend in, to insist that you are just like everyone else, to maintain a stiff upper lip, even at the expense of managing symptoms. So maybe I haven’t been as alone as I thought?
Read more…
So I earn a failing mark for consistency in blog posting, that’s clear. And this week I also earn a fail in the workout department, due to a Spring head cold. Is there anything more demoralizing than feeling like death-warmed-over when the sun is shining?
I’m on the mend and feeling extremely chipper today: it’s Saturday, I have a new ice cream maker and some new magic UnderArmour, and I had an awesome physical therapy appointment in Baltimore on Thursday. I’ve got less than a week before my next round of injections, and although some of the spasticity is, of course, returning to my legs, my gait continues to improve and my back is remaining (miraculously) aligned. Read more…
I’m trying to get back on the blog-maintenance wagon, really. Lots of things have been going on lately, for me personally on the fitness front, in politics with the health care reform, and in medicine as related to the treatments discussed here. I’ve dutifully bookmarked the articles I’ve found, I’ve mulled them over, I’ve drafted some posts, and yet nothing has shown up here. I don’t even have a good excuse. So as far as blogging goes, my motivation is distinctly lacking. I’ve been thinking about motivation a lot this week: who has it, who doesn’t, how to get it and how to keep it when things are rough.
Motivation isn’t something you can give to someone. Read more…