Irascible Ink

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.

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…

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…

I have to keep reminding myself that the purpose of this blog is to share my experiences, missteps as well as victories. The purpose is not to show how well I’ve got things sorted out, or to dispense advice that I can’t take myself. So in the spirit of full-disclosure, I’ve got to admit to skipping my planned workout this evening. And I’ve got to admit to skipping it for no good reason. I got home at a reasonable hour, and had plenty of time to go. Frankly, it’s still early, I could still make it.

But I find myself inexplicably stuck: stymied and deterred by inconsequential things. I haven’t got any clean workout gear that I am willing to wear in public. The gym is likely crowded with people determined to adhere to their new year’s resolutions. I’m irritated by some work events late in the day. A stranger nearly knocked me over at the grocery store yesterday and then was rude to me too boot, and I’m still stewing over it. I don’t want to watch other people at the gym easily twist themselves up into pretzels while I struggle to move my toes 3mm closer to my shins. (Dorsiflexion Holy Grail, remember?) Today, I just plain old don’t feel up to it, and not just the physical effort either.

Read more…

Yesterday was the office holiday party, an event that called for some coerced socializing and revelry. The holiday season is chock-full of this kind of carousing. Much of it with people you like a lot, and some with people you’d be horrified to find sitting next to you on a trans-Atlantic flight.

This got me thinking about social awkwardness. I don’t think anyone who has ever met me would consider me to be socially awkward. Rather, I appear to be outgoing and confident in the extreme: the consummate extrovert. When I’m in top form, I walk into a room, stick out my hand and introduce myself to everyone within spitting distance. I tell a couple stories, I ask a bunch of questions, I make it my job to make sure that the people around me have a good time. Even if it isn’t my party!

To most people I come in contact with, it probably seems really natural. But I have a secret–which some of you who’ve known me for ages might remember–I’m actually a shy, self-conscious person. Or at least, I often feel that way on the inside when I walk into a room of strangers. The extroversion, in my case, is absolutely a learned skill. This doesn’t mean that my interest in people and investment in getting to know them is somehow phony or disingenuous. It’s just that engaging with people this way takes time, effort and practice.

It’s a skill I cultivated, I think, to try to belong. I wanted to seem less foreign to people, and to feel less like an alien myself. I wanted to make other people feel welcomed and accepted by me, and hoped they would return the favor. I found that the way to ensure that you’re not excluded from the party is place yourself at the center of it. And by that I don’t mean donning a lampshade or attempting to dominate every conversation. Although, as I said, socializing when you feel awkward is a skill that takes practice. So I have been guilty of both ridiculous behavior and incessant nattering.

When you walk into a room, recognize that most people feel pretty much the same way you do. Maybe they don’t limp, but they’ve got some ketchup on their tie. Maybe they’re having a bad hair day, and are praying that no one notices that it’s is slightly green. Enter that room as if it were your job to make everyone feel at home. Every person you meet has a story to tell you, if you listen. And if you ask the right questions, you might hear a really epic one.

Many times this strategy has worked for me–I’ve made a new friend, made someone’s evening a little less stressful and a lot more fun. Many times, that someone has been me.

Happy reveling season, people! Let the wild rumpus start!

Barry

Welcome to Irascible Ink!

This is a blog devoted to my experiences as an adult with cerebral palsy, and my year devoted to optimizing my physical fitness and living the best and most limitless life possible.

I have to admit, I’ve got some misgivings about launching this blog. I’ve spent my whole life trying–by humor, by kindness, by stubbornness, by zaniness–to get people to forget, or not to notice, that I have cerebral palsy. Not because I am particularly ashamed of it, but because I firmly believe that it is irrelevant to my essence and sovereignty as a person. Or at least, I fervently believe that it should be irrelevant–merely a biological fact, like blue eyes or brown hair, like hitchhikers’ thumb or a widow’s peak. I have lived as if the rest of the world agreed with me–as if people didn’t stare, as if the staring didn’t bother me, as if having CP didn’t impact my life in any meaningful way.

For the most part, my cunning ploy worked. Most people who have known me for any length of time will tell you that they never noticed, or quickly forgot that I have a limp at all. They were too distracted by a silly story, a big smile, or a friendly handshake. I pretty much ignored CP’s influence, and because I ignored it, most people I cared about ignored it too. It was merely a footnote in the story of my life: it’s there for reference, but no one reads it.

As an adult, I discovered the gym, and working out as a way to feel in control of my body and my life.  I felt good. Sure, I struggled in ways other people didn’t, but I was in control and beating the CP into submission.  I worked, I traveled, I made friends, I went to school, I kayaked, I boxed, and I even learned to run.  Then came a string of injuries–a tibial fracture, some SI joint debacles. Then a long struggle to find knowledgeable medical professionals willing to work with me, and to help me do more than cope with less mobility and more pain. Suddenly having cerebral palsy took up a lot of my time, my brain-power, my physical and emotional energy, and my money.The thing that I had struggled so long to keep on the periphery of my life, had suddenly become central to it.

Launching this blog means really acknowledging the fact that this biological accident matters. It means accepting that it has had weight and influence, and that the experience has shaped me as a person. It means accepting that for some people in this world, the most memorable thing about me will be the fact that I have cerebral palsy. Frankly, that’s a really scary prospect: to allow, and even encourage, people to put me in a box, categorize me, simplify me. But I’m hoping that what I have to share will be helpful to folks fighting similar battles or to parents of kids with CP who worry about how their children will fare once they age out of treatment programs. I hope too that it’ll be at least a little bit entertaining.

Please see the About section to find out about me, the mission of this blog, and the disclaimers.

Cheers!

Barry

Note: If you’ve got questions, want to register a complaint, or have suggestions for topics to be covered here, please email me at irascibleink[at]gmail.com.