Tuesday, August 09, 2005

Right after the triathlon... Lovely orange swim cap, huh? Posted by Picasa

Monday, August 08, 2005

Brett and Me (he beat me... but only 'cause I can't swim in a straight line!) Posted by Picasa

Our Triathlon Team...."Nutty's Buddies" Posted by Picasa

Wednesday, August 03, 2005

Why I'm (sort of) Starting to Like Baseball

One week remained in my first year of teaching at Baltimore City College High School. Unlike my gullible 6th graders at Morrell Park, my sophomores knew that my gradebook was closed, so planning a structured and scintillating lesson on the United States Government was about as lucrative as the crunches I once thought would give me washboard abs. Instead of agonizing over lesson ideas, or grading work that I had no intention of recording, I threw a few student-written current event summaries into the recycling bin and drove to Frederick, MD with Jim for the weekend. We originally planned to camp, but opted for the Travel Lodge instead, and substituted a Friday night canoe trip for a minor league baseball game. If my memory serves correctly, the Frederick Keys (Baltimore's minor league team) were playing the Nationals. By the fifth inning, the score was still 0 to 0 and my attention started to wane. That's the problem with baseball: there are too many innings and not enough action. I like hockey or lacrosse games and (even though I'm biased) a good fast-moving track meet. Baseball is only one small step above picking the lint out of my dryer vent, so I don't buy season tickets.

On this particular evening, though, I went to a game. I also, for whatever reason, went with a moderate level of enthusiasm (which had something to do with Jim). I drank an overpriced beer and watched the people around me. I tried to concentrate on the first few innings of the game and learned that the letters KKK stand for more than a white supremacist organization founded in 1865, they also represent strike-outs (I was relieved to learn this, but still confused about the absence of African Americans in Frederick, Maryland). Then I lost my focus again and had to pee.

Jim was engrossed in the game and I had my wheelchair, so I wheeled away without discussion. I got about three feet from the bathroom when I passed a girl and her mother. As the girl was approximately six years-old (and thus at eye level), I smiled - I like to convince small children that people in wheelchairs are normal and nice. In this particular instance, it must have worked; rather than gape or walk by me (her mother was literally dragging her back to their seats), she stopped, pulled her mother to a halt, and looked me straight in the eye.

"Hi." I addressed her as non-threateningly as possible so as to avoid having my wheelchair tires slashed by her mother. The girl had thick glasses and stringy blonde hair all attached to a beautiful rosy-cheeked face.

She was literally pulling against her mother at this point, but I could tell she wanted to talk.

"Umm, why do you use that, that wheelchair?" She sort of pointed at my chair and then put the majority of her left hand into her mouth.

Like I said, she was six, right - she obviously had no concept of nerves or myelin or autoimmune diseases that compromise a person's functionality, so I rejected even a cursory explanation of multiple sclerosis, and summed it up like this:

"Do you ever get colds?" (She nodded) "Well when I was 19 years old, I got a cold in my legs. Only my cold won't go away. And just like your nose doesn't work really well when you have a cold, my legs haven't really worked well since. So my wheelchair helps me get places..."

Her mom stopped pulling her and let her listen, and right as I finished my blatantly inaccurate explanation of my neurological disease, the little girl put her hand on my shoulder:

"That happened to you?" (Now I nodded while her eyes got very serious.) "Well I'm really sorry to hear about that."

Then she walked away. I went to the bathroom and started crying. This little girl still makes me cry, in fact, and I don't even know her name. For whatever reason, when she spoke I felt every disdainful look I've ever received in grocery stores/parking lots/malls/restaurants/churches/pretty much everywhere I've ever tried to go, all come back at once. I remembered bouncers turning me away from bars because they assumed I was drunk, the note I found on the floor of my classroom that referred to me as a "crippled bitch", and Darryl, a kid on the track team that I'd coached, who'd imitated my walk. All at once, I felt the memories of eight years worth of shame and preemptive explanations or apologies on behalf of a disease I never asked for, all land straight on my sternum in the form of 18 cinderblocks. So I couldn't breathe evenly for a few minutes (cinderblocks are heavy) and I started to question why it is that small children are so real and honest and pure, while adults are awkward and scared and meek. I started imagining the past eight years of my life if people just asked me what was wrong, said it sucked and moved on, instead of whispering things and treating me like a three-armed circus freak that earns averted looks, blatant stares or pity. I decided the 18 cinderblocks would have felt far less heavy.

So I cried.

Jim thought I'd injured myself in the bathroom (which is, sadly, highly possible). But I don't cry when I'm hurt, or even when I'm sad. I cry when someone acknowledges that concrete blocks are heavy, and that MS (or a "cold" in my legs) does suck. I cried then because a six-year-old, with genuine concern, and innocent inquiry, validated two things: what I felt on behalf of a debilitating disease, and what I want from the people around me. Neither of which I know how to get, and both of which I think I need.

The Keys won that night, but I don't remember the score. I do know, though, that if baseball were more interesting than dryer lint, I never would have gone to the bathroom in the middle of an(other non-scoring) inning. I would have spent one more day with the cinderblocks that I try to forget about, instead of remembering, and receiving, what I need.

This is Brett, whose butt I plan to kick in the swim portion of the triathlon (even though I can't kick!) Posted by Picasa

My brother (whose graduation inspired me to bust my knee in a handicapped bathroom) Posted by Picasa

Tuesday, August 02, 2005


Last summer I planned to go to Scotland. Sarah, my roommate from my Junior year abroad was working in Edinburgh, and compared to the 27 hour flight from Baltimore to Australia, I could travel to Britain in a mere 9. Without much thought, I booked a ticket on Orbitz, and briefly rejoiced in my impulsive, carefree attitude. I was empowered. I was an independent teacher who'd saved her money wisely, and planned to spend it in style. I would travel intercontinentally alone, with a neurological disease, and it was going to be fabulous.

But that's not exactly how things worked out. First I discovered that Sarah was still, after several months in Edinburgh, living in an un-MS-friendly hostel (she'd assured me she'd be living in a proper "flat" by the summer). Then I had a relapse. To complicate things further, somewhere in between, I'd convinced my co-teacher/favorite friend in Baltimore to travel with me. To clarify: I purchased plane tickets in March, convinced Amy to purchase plane tickets shortly thereafter, found out that the aforementioned "flat" was nonexistent in April, and had a relapse in May.

Relapses vary when it comes to MS, and certain people bounce back without sustaining permanent-types of disability. I, however, didn't. I got a sunburn that turned my skin tone from relatively normal to that of a fetal pig in formaldehyde, presumably melted some precious nerve myelin in the heat, and was suddenly rendered just a little more disabled than I was before. My symptoms were bad enough that I started using my wheelchair in the grocery store, at the gym, when I went to get my hair cut, on trips out to dinner, etc. My legs and coordination deteriorated to the point that I managed to slip in a handicapped bathroom while I was at a hotel for my brother's college graduation, and was forced to use a walker for the majority of May. The relapse was serious enough that the trip to Edinburgh no longer seemed practical. I started to envision my wheelchair wheels stuck between historic British cobblestones, and my friend Amy hauling my wheelchair up stairs while I climbed, a la Spiderwoman, to wherever our destination might be. I saw myself in bars with cute Scottish men and my walker, and concluded, thus, that I needed to cancel the trip I'd already planned. I needed to leave Amy alone with intercontinental travel plans to see my best friend, and spend the summer home, with my family, in Ithaca.

I didn't deal very well with any of these conclusions. Especially when Orbitz refused to refund my tickets, and the various hostels I'd booked throughout Scotland were ostensibly impossible to reach. $2000 poorer, and one geriatric walker later, the school year ended, Amy left for Scotland without me, and I went home to my parents'.

I planned to write a lot, but the keyboard was stiff, and my fingers were MSey and uncooperative. Instead I worked really hard on two things: not taking my anger out on God, and swimming. I begrudgingly had hand controls installed in my car (wince!), and bought "life-changing" jeans for far too much money (no, there is no correlate). Then, though, just as I reached the pinnacle of my pity party, I met Jim.

Jim had been roommates with my closest friend from high school, Meli. The two of them had lived in Seattle for three years, initially building houses for Habitat for Humanity, then living together while Meli continued with carpentry and Jim worked with incarcerated youth. At the end of their three years together, they drove from Seattle to Ithaca; Meli prepared for law school the upcoming fall at Cornell, and Jim prepared to move back to South Florida, where his family lived. When the two of them arrived in Ithaca, I was supposed to be in Scotland. Jim, according to my unwarranted expectations, was supposed to be annoying.

He wasn't.

We spent four days together, Meli, Jim and I, and when he left I felt a little different about things. I didn't think about MS as much. I signed up to swim across the lake. I started writing more. I remembered how to laugh. I thought at first it was the jeans, but after some not-so-challenging introspection, I realized it might have something to do with Jim.

After a decidedly ineloquent email where I attempted to express these sentiments to Jim, we slowly started talking. Then I visited him in Florida where he sat with me on the ground after I'd tripped, and asked me what it felt like to walk. A question that no one had ever asked me before...

A year later I'm still not in Edinburgh. Amy had fun without me and Sarah moved back to Australia. I still use a wheelchair to grocery shop, and I've gotten much, much better at balancing the bags on my lap (a skill I'd never hoped to acquire). I swam across the lake and wrote a book. I found a job teaching that I actually enjoy, and, more importantly I fell in love.

Jim lives in Baltimore now. He drives me absolutely crazy and just dropped a hamburger on my new couch. His feet smell and he's the most self-righteously stubborn person I've ever met. He's passive aggressive and independent, yet undoubtedly the most unconditionally loving and perceptive person I've ever met. No one has ever had this much capacity to break my heart, and the whole thing makes me want to bury myself in a bag of mulch - I'm vulnerable and scared and can so clearly remember the days when just my disease and myself governed my mood... But Jim, and the circumstances that brought him into my life, are what I would characterize as Jesusy.

So far.

So I guess I'm glad, in retrospect, that in spite of a new walker and a $2000 loss, I didn't take my anger out on God. I'll take a grease-stained couch over a summer in Edinburgh any day.

Jim, Taylor, Sarah and Mike Posted by Picasa

Jim and Me Posted by Picasa