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Friday, June 27, 2008

Small Victories

Last Wednesday marked the first victory of the summer: I swam in Cayuga Lake. Let me attempt to explain why I consider this a victory.

My family lives in Ithaca, a small town in upstate New York that is known primarily as the home to Cornell University and as a haven for hippies. It’s a strange little town, and I never truly appreciated its idiosyncrasies until I moved away. I also never appreciated Cayuga Lake until I spent 8 years staring into the garbage infested, oil tinged and vile smelling inner harbor that serves as Baltimore’s # 1 tourist attraction. Up here in Ithaca, though, not only do I get to stare into a beautiful, cold, (relatively) clean lake, I get to swim in it too – which is easier said than done.

My family doesn’t live on the lake, nor is there public access in any MS-friendly location. We know people with highly sought after lake houses, but they generally include a million long, steep, uneven stairs that effectively prevent wheelchair access. Consequently, if I want to swim in the lake, I need to find a place where one can all but drive into the water, I need someone to help me traverse the sharp stones that comprise the lake’s “beach”, and someone to help me get out of the water post-swim. Last summer, thanks to my mom, I found that place – it involves a mysterious key, a rusty gate and a mile of gravelly dirt road that ends up – obviously – at the lake. There is a small patch of grass that accommodates my mom’s car, and an approximately 25 step walk to the side of the lake. With my mom’s patience and help, I usually manage to hobble from the grassy patch to the rocky beach, where I gracefully sink onto my butt and crab-walk into the sub-seventy degree water. Once submerged, I remove my too-small tevas, throw them back to shore, adjust my swim cap and goggles and swim away (have I mentioned how relieved I am that this is not a public beach?).

This whole ordeal was barely feasible last summer, and last summer I was considerably more functional than I am now.

My body wants nothing to do with leaving the bed lately. I put my bathing suit on and break a sweat; I walk down the stairs of my parent’s house grasping the railing so tightly my knuckles turn white; I sit to put on my shoes and spend another ten minutes wrestling with my own feet. When it’s finally time to go out the door and head towards my mom’s car, I use the last of my energy and concentration; every step is planned. If it’s not, I fall, and it’s no picnic trying to get me up. Truly, my body is a phenomenal pain in the ass.

Swimming in the lake, though, as difficult as it’s become, offers me the only peace and tranquility I can find within this body of mine. Thankfully my mom realizes this too; so she sacrifices her summer afternoons to drag me to and from the lake - an activity that likely rivals sticking her finger in electric sockets.

So last Wednesday, I struggled to my mom's car and the three of us: my mom, my slightly spastic dog and I headed to the lake. I couldn’t help but imagine all sorts of catastrophic-type circumstances. What if, while linking arms with my little mom, I lost my balance and wrenched her shoulder out of its socket? What if I fell and she couldn’t get me up (I am, after all, 6 inches taller than her)? Worse yet, what if I got half way through the swim and my arms stopped working and I drowned? I couldn’t even bank on a heroic rescue from my 60 pound lab mix, because her only rescue strategy involves frantically paddling toward me, then paddling/climbing on top of me, and finally pushing my head beneath the water and grabbing my ponytail with her teeth.

(I guess you could call these slightly hyperbolic possibilities.)

It is with these extreme (and slightly melodramatic) fears that my mom, dog and I arrived at the beach, met my friend and swimming partner, Chris, and began the slow and potentially treacherous walk to the water. While my dog sprinted mindlessly in circles, my mom and I worked out a system: she would walk forward a step and stabilize herself, and I would grab onto her arm when she was still (with an unnaturally tight grip) and mentally will my legs to move along after her. It wasn’t the fastest process in the world, but I made it – onto the shore and down the rocky beach to the water. Eventually, with assistance from Chris and my mom, I sunk down into the water crab-style and was free. Unfortunately, as soon as I was fully submerged in the sub-seventy degree water, my dog decided it was a perfect time to swim out to me and practice her rescue strategy. She also decided that the buoy I use to help me keep my legs afloat was more suitable as a floating chew toy, and – as such – it now resembles a chunk of mangled, swiss cheese rather than a swim buoy that any self-respecting athlete would use.

Chris slid into her wetsuit (which seemed like a workout in itself) and the two of us began our swim. I kept the buoy firmly between my legs, relying solely on my arms to pull me through the water; Chris – with a presumed tear in her rotator cuff – pushed herself through the water using only her legs. (I’m certain that if the two of us could somehow combine our functioning limbs, we’d be the Amanda Beards of Cayuga Lake.) We were undeterred though, and the two of us – slow as it was – finished our half mile swim with, if not grace, then at least a respectable amount of determination.

Back at the beach by my mom’s car, Izzy galloped into the lake like the incorrigible water-loving mongrel she is, and paddled furiously towards me; she was either ecstatic to see me and relieved that I’d returned alive, or she wanted the half-eaten buoy (I prefer to assume the former). I dodged her, distracted her with sticks, and began my ascent back onto the rocky beach. Chris and my mom helped me out of the water and back to the car where I hastily removed my cap and dried off. Chris, fighting to pull the saturated wet suit off, managed to smile and say, “This was fun, when will we do it again?”

I opened the door to my mom’s car and Izzy jumped in. She managed to get her muddy paws on both front seats before she awkwardly leapt into the back seat, shook furiously and began rubbing her wet (stinky) body all over the interior of my mom’ car. I glanced over at my mom who looked somewhat defeated at this point, and said to Chris, “Every day that we can!”

My "Bucket"

I just got off the phone with one of my all-time favorite people. She just broke up with her boyfriend of two years, because – as he explained it – he doesn’t see a future between them. Somewhere in my self-aggrandizing brain, I’ve come to view myself as the only scared, single 20-something alive. Rationally I know this is not true, and though the MS thing definitely sharpens my fear of perpetual singledom, I do not have (nor want) a monopoly on loneliness.

While listening to her tonight, she said something that made me think. She said, and I paraphrase, “People say I’ll find a better guy, but I’m starting to think that everyone’s pretty much a mess. We go through break-ups in order to give us time to breathe and recover enough to deal with another person’s bucket of shit.”

So here I am, an hour and a half later, thinking about my own bucket of shit. It comes in the form of a wheelchair, but inside it there’s all the fear and disappointment and anger that have grown out of a decade with MS. I’m sure there’s other shit in my bucket by now, but everything MS-related is definitely the heaviest for me to carry, and the hardest for me to share. In spite of this, though, I might actually have a leg up on several other single 20-somethings out there: I’m acutely aware of what’s in my bucket. And while I typically reserve the articulation of my MS-related struggles for my journal, anyone I date sees the majority of my “mess” immediately. I guess this should be viewed as a positive. I’ll never ask anyone to go burying through my bucket of shit only to discover the real deal-breaker five years down the road.

In addition to this oh-so-sophisticated bucket of shit epiphany, I realized something else. My friend – MS or not – is hurting just as badly as I ever have. Post-breakup, she’s filled with the same type of fear, self-doubt and sadness as I am. And just because her own “mess” doesn’t include a neurological disease, doesn’t make it any easier to deal with, heal from and eventually share with someone new.

A year and a half later...

Since it’s officially summertime, and I’m traveling and mooching off my parents rather than maintaining any semblance of gainful employment, I figure now is as good a time as any to start writing again. I never really stopped, but for the past year and a half, my journals have been redundant entries that boil down to two things: an increasing hatred for and impatience with MS, and a concurrent loss of hope in God. My goal is to write despite my inability to get out of this funk. Point being, if you are looking for an optimistic, feel-good-type story, you might want to read someone else’s blog.

That’s my preface.

Lately I feel like I’m chronically raining on someone else’s parade. When friends call with news of marriage, pregnancy, new children, or new jobs, I’m having a harder and harder time answering the simple question, “How are you?” See, I have a few “friends” who – without much prompting – seize the opportunity to respond to the inquiry with a 20 minute soliloquy listing each and every grievance. The maladies are subject to almost daily changes and vary in extremity – from dust allergies to suspected organ failure. The only conclusion I can draw from this is that there are people out there who are genuinely unable to successfully function as humans.

I’m worried I’m becoming one of them.

So I’m learning to dodge the question and substitute a truthful response with a story about my dog or – during the school year – about my students. Sometimes, though, a piece of truth slips out. I’m worried that with it, my stock value as a friend will decline (or, at the very least, become much, much riskier to invest in).

Last week I went to a friend’s to play poker. (Read – to give away money.) I brought my dog with me so she could burn off some energy with my friend’s dog, and in between hands, one of the guys pointed out that she could benefit from some obedience training. That my dog is prone to minor bouts of misbehavior is undisputable: ten minutes into the poker game, she had stolen the other dog’s toys and destroyed them, drank a spilled beer off the floor and launched herself onto my lap to lick my ears and chew my nose. Really though, other than her overwhelming level of excitement and her occasional stubborn streak, she’s a pretty good dog. Especially since she’s still (sort of) a puppy.

Excuses aside, I acknowledged her misbehavior and – while laughing – added, “If I didn’t have that dog to feed, though, I’d definitely have killed myself by now!” I then realized that efforts at levity while alluding to suicide just aren’t funny. Especially since – even though they’re guys and thus generally oblivious to emotions – I think all four of them detected a slightly disturbing level of honesty behind my hyperbole.

I inwardly winced, awkwardly laughed and immediately changed the subject. Without further mention of my dog or suicide, the five of us continued our poker game.