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…
It was such a pleasure for Kim and I to show you and Karen around our neighborhood, and enjoy a nice dinner with you. I'm glad to see you shattering travel barriers. What's next? Mexico? Europe? New Jersey?ReplyDelete
It was really wonderful spending time with you and Kim. As for what's next, I'm going to Queens tomorrow. It doesn't get more exotic than that…Delete
I was really excited to read of your successful trip. Seeing the picture of you and Mitch together made me happy and sad at the same time.....I would love to have seen a third person laughing with you two guys. As for Karen and Kim, they are at the top of the list of women who have no equal, deserve the greatest admiration and respect for the love, effort and humanity that they innately exhibit. It would be so easy for them to walk away, but they know who they are and who theyReplyDelete
Hi Hilda, we would have loved to have that third person laughing with us, believe me. Karen and Kim are both gems, and Mitch and I too of the luckiest bastards around to have them. Sending lots of love right back at you…Delete
Good for you! I am far less debilitated than you, yet I have let this curse make my inertia-prone self almost into a statue. Not a good thing. Fatigue, flares, pain and other vicissitudes of life have all claimed a share, but my biggest enemy seems to be myself. Yada yada, but this weekend things change! I'll be working out with a trainer for the first time, one who is experienced with MS and Parkinsons patients. Hope to get motivation, structure and discipline back, get my diet back on track, and LOSE WEIGHT.ReplyDelete
If Marc can tool around New England in a van and power chair, then I can get off my duff and get fit!
So thank you and best wishes from your long-time reader, Essdipity
Hope your session with the trainer was a big success! I know all too well the tremendous pull of inertia, the less active you are the less active you want to be. That's why it's important sometimes to push yourself, and try to separate what you really can't do from what you just don't feel like doing. I find that once I'm out and about, it usually turns out to be well worth the effort. Then again, sometimes you do have to listen to your body and lay low for a while. As they say, for everything there is a season…Delete
Good for you for not letting the MonSter slow you down! Companion help is certainly priceless...one day, I hope we have robots that can serve as helpers for those of us that don't have a "Karen."ReplyDelete
Have you seen the little car that is specifically adapted for wheelchairs? (http://www.kengurucars.com/)
If only I had the money...
Hopefully, this new experience is just the start of travel fun for you!
Sue, I love the little electric wheelchair car. Would be nice if it had room for a passenger, though, and also would be good if it could be controlled by the joystick, as I am limited in what my appendages can accomplish. I wonder if they've ever tried to make a joystick controlled car? You'd think if it could control a wheelchair, it could control the car. Then again, given the way I drive my wheelchair, I really don't think I should be let loose on the roads.Delete
We should have helper robots already, Goddamnit! When I was a kid they told us all kinds of wondrous things about the 21st century, and so far the best thing they've come up with is the smart phone. I'd take a robot over an iPhone any day…
I'm really enthusiastic about your vacation for so many reasons. For one thing, it has made me realize there are rental resources out there I didn't even dream of. It also reminded me how much I want to go to Maine, the source of so many of my parents trips to look up family history. Love all the rich detail in this post and love seeing you and Mitch together!ReplyDelete
(oh, and cool Kenguru car link from Sue, too!)
Daphne, you should definitely go to Maine, the scenery is just spectacular. I really love New England.Delete
I was very happy to find the accessible Van rental option. Really opens up a lot of opportunities. Unfortunately, I think the guy who rented me the van only has one van to rent, so I expect I'll need to book it way in advance for certain trips. And you know how things go with MS, it's hard to make long-term plans…
Good for you, Marc!! So happy you did it and perhaps this is the beginning of more travel in your future. If you would consider cruising, I have found it to be a very comfortable and easy kind of vacation. There are many kinds of cruises to go on ... We have been on many jazz cruises. Large ships offer accessible rooms. Elevators between decks enable you to avoid stairs. Some lines even have indoor pools. All info is online now as well. Lots of possibilities await you, though you may need to alter a former vision re who does these things as in, "only old folks go on cruises"...who cares?? We have met wonderful people and seen parts of the world we never would have on land. Many times you can get really good deals as well. Whatever you do, enjoy every day, and enjoy it with Karen. She is so special.ReplyDelete
Hey Roberta, thanks for the tip about cruises. I've heard some people say that the wheelchair accessible rooms on cruise ships are some of the best they've experienced. Karen isn't a big fan of the ocean (dreadfully afraid of sharks), but a jazz cruise does sound quite enticing. I'll have to look into it. Thanks for the heads up…Delete
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Marc, how strongly evocative this story is. I have progressive secondary MS.ReplyDelete
Maybe we are better off, or the public health service support in Australia is better, or perhaps we are more rural but over the past three plus years we have inched towards the setup that we took on the road last month for perhaps the first of many road trips. How well we (Ros and I) recognise the fears and doubts that precede such an adventure and well too we know the satisfaction thereof.
With me craned (Milford Hoist) in a sling into the front passenger seat. With the power wheelchair(minus me!) guided by Ros up the ramps into the back of our VW Caddy. With the manual wheelchair and the collapsible commode chair squeezed in along with all the other equipment and luggage. So grateful to son Josh who helped Ros pack a bulging vehicle. Wheelchaiir friendly hotel accommodation down here sounds better and we could count, if we selected carefully, on a roll-in shower.
The downdside (as Karen would recognise) is that Ros had to do all the driving, packing, unpacking, heaving of ramps etc etc etc but the upside was that I was sat, like a normal person, beside my darling for more than 3,000 km of Australia's best. The vehicles that put the wheelie in the back, as luggage, cannot compare. You and I share a delight and enormous gratitude to our "upright" wives!
Along the way we visited our friend Denis Wright (http://deniswright.blogspot.com.au/) who is similarly carer-wife blessed by Tracey. He is a follower of your blog and I commend him to you.
Thanks for your posts.
David, thanks for sharing this little bit of your story. I haven't had the experience of being stuck in the back of a van like a piece of luggage, and I'm sure I wouldn't like it. But dealing with this disease certainly teaches us to suck it up at times, and put up with inconveniences and even indignities that we could have never dreamt of putting up with in healthier times.Delete
Happy to hear that you two have an "upright" wife, in all of that moniker's connotations. There is indeed great satisfaction to be had even though we must go to great lengths, at times, to find it.
Would love to visit Australia one day, not sure I could withstand the flight, though. But who knows what tomorrow may bring?
Immense thanks for introducing me to your friend Dennis's blog. Great stuff, from a very wise man. I am now a follower, and look forward to catching up on many of his posts.
LOVE the picture of Marc and Mitch together! Oh, to be a fly on the wall... or better yet: join you in my power chair for the evening. I even have my own version of Karen and Kim - his name is Allen, my own DH. Since we used to live in NH back in 1992, we frequently traveled to Maine (I wasn't Dx w/MS yet) and I was still walking, making photographs, and playing tennis. Loved going to Ogunquit in winter and eating and drinking at The Hurricane, esp. for their Sunday live jazz brunch, Strawberry Banke, and walking along the Marginal Way. I've ended my traveling days, yet enjoy living vicariously thru you both.ReplyDelete
Heidi, I'm sure Mitch and I would have loved having you with us for company. Happy to hear you have a male version of Karen and/or Kim, as it seems lots of men have a hard time handling the situation when MS strikes their spouse.Delete
Maine is extraordinarily beautiful, it's nice that you got to experience it to its fullest.
Thanks for your comments, it's comforting to know there are so many kindred spirits out there…
Marc, bravo for confronting those subconscious limits. We try to protect ourselves with them, but sometimes they just lock us up. Keep on tripping! (Uh, that didn't come out right...)ReplyDelete
Hey, I've nothing against a little tripping no matter the source of the travel. Just don't call the authorities…Delete
Yes, those subconscious limit can be quite a nuisance. Walls keep out but also keep in, so we've got to make sure not to build them to sturdily… It's a fine line, and sometimes it's healthy to just smash down the walls we've built and start anew.
What a ride and adventure! I really felt the moment you wrote about getting on the massage table. Lately my self-image has been awful and have noticed the difference in my appearance the more I slow down. I cringe at recent pictures and the expansion of me. The ‘old me’ was driven a lot by what I could do physically, so that meant being in good shape. SO now not only do I have MS, but I feel bad about how my body looks like too? Completely unfair. I wouldn’t feel that way about anyone else. Why are we so hard on ourselves? Love the post –Happy it was a smooth ride and good planning on your parts!ReplyDelete
We are awfully hard on ourselves, aren't we? One of the hardest lessons to learn through all this, for me at least, has been to practice self kindness. So easy to be self-critical, and vanity is such an unattractive trait. I'll sometimes look in the mirror in absolute disbelief, but we must accept that which we can't do anything about. I'm not going to get buff sitting in a wheelchair, so I'll just have to embrace this new me.Delete
Happily, the massage therapist didn't run out of the room screaming when I did remove my shirt, so that helped…
Oh Marc, I can't tell you how happy it makes me to read of your adventure. I'm sitting here right now with a huge grin on my face. Good for you!ReplyDelete
Hey Charlie, don't sit there grinning too long, or the men in white coats will come to get you. Glad reading about my little adventure pleased you, I always like to hear about your idyllic times spent in NH.Delete
Thanks for the comment…
I am proud to be even a little bit responsible for getting you and Karen to take your road trip, and there are no words to express how happy Kim and I were that you came to celebrate my 50th birthday with us. Now, for all of you WC Kamikaze fans out there, (I hope that I am not letting the cat out of the bag here), please join me in wishing the Kamikaze himself a happy 50th birthday, as Marc turned 50 yesterday. Wish I could be there to celebrate with you but I'm not quite as adventurous as you!
Love you buddy,
Harvey (from Maine)
Oh...and did somebody say Jazz Cruise? Sounds pretty cool!
Hey Harv, I think we could do some damage on a jazz cruise! Not sure if we'd get physically thrown out of the bars, as in the old days, but it might be fun trying.Delete
Was great spending your 50th with you, and thank you for getting me off of my ass (at least figuratively, if not literally).
Love you too, buddy…
Woo Hoo, Marc! For both the road trip (love 'em) and your 50th! I celebrated my 50th for the whole year. Happy Birthday, man, and keep the brilliance coming! I look forward to every post.ReplyDelete
Thanks for the woo hoo, Lisa, and for the happy birthday wishes. So glad you like the blog…Delete
Poem anthology by authors who have Multiple Sclerosis...soon to be published! Check out www.touchingms.com and revisit to order your copy. Proceeds will benefit the MS community.ReplyDelete
I am very inspired by your travel story and I want to do so much more, but the primary obstacle that prevents me from busting out of my comfort zone and taking a road trip to Maine (I love Maine) is sleeping in a regular bed. Can you get in and out of a regular bed unassisted? I cannot. Right now, I sleep in a zero-gravity lift chair, so that I can get up during the night to use the facilities.....ReplyDelete
I have a lot of difficulty getting out of bed, but I use something called a bed cane, which is like a little railing that attaches to the side of the bed. I can pull myself up using it. The thing is really a lifesaver. They can be easily fitted to any bed, just Google "bed cane"…Delete