A big thanks to all the nice folks who sent well wishes last week for my trip up to Maine. I’m happy to report that the excursion went extraordinarily well, despite my nervousness about leaving my comfort zone and venturing forth into the wilds of territory unknown to the gimpified me and my trusty mechanical friend Legs, otherwise known as my wheelchair. In anticipation of the excursion, my vivid imagination concocted fears that proved to be not grounded in reality, and this trip made me realize that such fears are as much a symptom of my disease as my paralyzed right side.
It’s all about adapting to changes, and when dealing with a chronic, progressively disabling illness, the changes just keep coming. Nestled within the safety of my comfort zone, which encompasses not only my apartment but also the surrounding neighborhood with which I am so familiar, I can compensate incrementally as the changes come, or try my best to ignore them. When thinking about traveling beyond the boundaries that I’ve subconsciously demarcated on a map that is constantly being reworked by the troubled cartographer in my mind, I find myself consumed with unease, a barrage of “what if’s” doing their best to crowd out any notions of a carefree escape. I’m certainly aware of other disabled folks, some worse off than me, who have taken incredible journeys, but that knowledge does little to quiet the naysayers in my head.
Not that I’m some shrinking wallflower, quivering timidly in my shell. Quite the contrary, in the realm in which I’m comfortable, I am often quite outgoing. If I spot a puzzled tourist looking lost in Central Park, I don’t hesitate to roll right over to them and offer some assistance. I’m happy to meet friends old and new for a meal in one of the many restaurants on “my” NYC streets, and of course, now that I’ve slain my once percolating doubts that I might no longer be able to pull off taking photos from my wheelchair (which I wrote about here), I’ve been out and about shooting lots of photos, the best of which will eventually get posted to these pages when I finally get around to running them through Photoshop. I’m not exactly a whirling dervish of activity, though, as the disease does take its toll and demands its ritual sacrifices and burnt offerings in the form of plenty of downtime and other concessions to the fatigue, discomfort, and weakness that it likes to throw at me like Zeus hurling thunderbolts, but on whole I’ve actually had a pretty active summer.
That said, when I received a note from my dear friend Harvey inviting me up to Maine for his 50th birthday party, my initial, knee-jerk reaction was simple – no way. Harvey’s note wasn’t a straightforward invite, though, he laid out an emotional and compelling argument for me to get off my duff, which included the line “How often do we (or will we) ever get to see each other?” That “will we” really struck a chord, as getting hit with this damned creeping paralysis has really brought home the capricious nature of life, and crystallized the stone cold truth that the only thing we can really be certain of is uncertainty. I thought of two good friends who had been quite upset for me when I was originally diagnosed and had offered their continuing sympathy and support. They were both healthy when I told them of my disease, but both are now gone, one the victim of an aneurysm and the other of leukemia, while I’m still here, a circumstance none of us could have possibly foreseen when I first delivered the news of my illness.
I remembered Harvey standing up at my wedding to make a toast, glass held high. He said, “I’m adopted, and I know that family has more to do with love than blood, and Marc is family.” I knew that Harv has gone through some difficult family upheavals over the last year or so, and I thought back to the days of our youth, when the two of us laughed and loved and lived and cried con mucho gusto as we tried to carve footholds in life through a crazy quilt epic of cheap booze, raw emotion, and tantalizing hopes and dreams. We were in our early 20s back then, both fond of an obscure old 1970s movie called Hurry Up Or I’ll Be 30 (click here). The age of 30 seems very far off when you are 23 or 24, but now it’s just a speck in my rearview mirror, growing more distant with each passing second. The subject line of Harvey’s email invite read “Hurry Up or I’ll Be 50”, and if those words couldn’t light a fire under my fanny, well, I might as well have just gone ahead and gave up the ghost right there.
Additionally, I was keenly aware that Karen and I hadn’t had anything even remotely resembling a vacation in years, and God knows she deserves a trip around the world for all she’s been through the last decade. After wrestling with the pros and cons for a few minutes, I googled “wheelchair accessible van rental New York City”, and lo and behold found that such a rental was indeed possible. Renting an accessible van meant I could travel with my power wheelchair, something I’d never done before, and indeed, that was the secret to our successful trip. Traveling with my manual chair just plain sucks, since I lose all independence once I’m in it, and I now realize the tremendous role that feeling of dependence has played in my reticence to leave my little section of New York City.
Okay, enough with the endless soul-searching, or else I’ll have to change the name of this blog to Wheelchair Socrates, and that wouldn’t be any fun now, would it? So, onward ho with a little travelogue of our trip. The accessible van was dropped off to us the Tuesday night before our Wednesday departure by a very friendly and extremely helpful gentleman named Jeff, who runs the New York branch of Wheelchair Getaways (click here). Wednesday morning (well, early afternoon, since I generally do my best to avoid mornings) we packed up the van and hit the road. Jeff had removed the passenger seat in the van, so I could roll right up and sit next to Karen for the duration of the drive, playing navigator as Google maps shouted directions from my iPhone.
Our first stop was Portsmouth, New Hampshire, a picturesque seaside town just south of the border with Maine, about a four and half hour drive from NYC. We stayed in a hotel in the historic district of Portsmouth, and our accessible room was spacious and well laid out. I’d been quite anxious about the fact that there were no rooms available with stall showers, as there’s no way I could step over the side of a bathtub to take a shower. Happily, I found that the large wheelchair accessible bathroom in our hotel room
|The Flying Wallendas
Portsmouth was loads of fun, lots of good New England seafood and charming streets lined with quaint specialty shops and boutiques. We visited an open-air museum called Strawberry Banke (click here) which is comprised of about twenty late 17th and early 18th century structures, all open to the public and some staffed with reenactors. About six of the old houses were wheelchair accessible, and despite my kamikaze tendencies I managed to navigate the chair through the extremely narrow doorways and halls without destroying any centuries old buildings and/or artifacts. I’m a history buff, and Karen has a degree in Historic Preservation, so this was right up our alley.
|Marc and Mitch
|Tennessee Tuxedo and Marc
On Friday night we had dinner with Harvey and his wife Kim at their spectacular circa 1820 house, which was actually more impressive than any of the old houses at the Strawberry Banke Museum in Portsmouth. I again managed to avoid knocking down any walls or destroying any of the early 19th century details of the house, which naturally wasn’t designed way back when for power wheelchair users. Very shortsighted of the 1820 designers, if you ask me, who should have foreseen power wheelchairs even though the electric light bulb was still decades away from being invented. As is always the case with Harvey and me, even though we hadn’t seen each other in way too long, within minutes the years melted away and it was almost impossible to believe that nearly three decades had passed since we’d engaged in the antics we laughed about over dinner. Does anyone ever really grow up? I hope not.
Saturday was the day of Harvey’s 50th birthday bash, which was quite the shindig, not too big, not too small, with lots of interesting folks with whom to meet and talk. Since drinking not only exacerbates all my symptoms but also usually leaves me feeling like absolute crap for days afterwards, I sipped a little wine while watching almost everybody else around me slowly (or not so slowly) get totally smashed. That in itself was pretty entertaining, but I’d be lying if I said that I didn’t miss being able to get absolutely plastered every now and then almost as much as I miss using my right hand. Karen struck up a friendship with the Québecois wife of a friend Harvey made when he first moved up to Maine, who shared Karen’s passion for historic preservation and works for museum up in Canada. I spent some time talking with one of Harvey’s neighbors, a noted poet (click here) who teaches at nearby Colby College. Fascinating guy, and in our relatively brief conversation we managed to hit on almost all of the topics usually considered taboo upon first introductions, including sex, politics, and religion. Nothing I like better than keeping it light.
Karen and I stayed at the party till the wee hours, and then headed back to the hotel. The next morning we checked out, had some brunch, and then made the long drive back to New York, a trip that took about 7 ½ hours. We had to make the trek in one day because the van was needed early Monday morning by somebody else who was doing a wheelchair getaway of their own.
So, there you have it, our first vacation in a very long time. Literally none of the possible mishaps I had nervously anticipated came to pass, in large part thanks to the efforts of my sweet and wonderful wife, who handled all the driving, packing, unpacking, and countless other tasks and details needed to make sure I kept myself out of trouble. Honestly, I don’t know where I’d be without Karen, but I’m pretty sure it wouldn’t be any place good. With her help I managed to smash through the confines of my comfort zone, and though the trip was of course tiring, it was also invigorating, a feast for all of the senses, even the ones dulled by disease. Being able to celebrate my buddy’s 50th birthday with him was priceless, as are my newly expanded horizons.
Making this trip gave me the opportunity to give MS a big middle finger, something all MSers should do on a regular basis. So, FU MS, and hello world. I’m sure I’ll still have periods of fret and worry preceding any future travels, and if my disease continues to progress there very well may come a day when I literally can’t take to the road, but for now I proved to myself that I can. As Franklin Delano Roosevelt said, the only thing we have to fear is fear itself. And don’t forget, FDR was another guy in a wheelchair…