Bitter-Sweet

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Hello world, we meet again! Despite being a ‘night person’ starting this passage at 10pm is pushing it, even for me. But I feel compelled to write tonight so here goes...

I’ve been going to Ocean City, NJ for 15 years now, at first for a yearly summer week long adventure and in more recent years, for Easter weekend. Obviously this tradition has grown increasingly difficult for me to accomplish as my physical disability has increased. Accordingly, my experiences there have been marked with both the positive memories of the ‘good’ years and more recently, the still wonderful but often frustrating reality of navigating my beloved vacation spot with my traitorous, wheelchair-bound body. Oftentimes with MS there are cognitive and memory losses but not for me. I’ve described my mental function as ‘obnoxiously intact’ while my legs bore the brunt of MS destruction. And so with every trip to Ocean City I’ve progressively lost my ability to enjoy what I used to. I can get to the boardwalk in my wheelchair but I am then met with the cruel presence of the sandy beach I can no longer traverse. And so it was this past weekend...I made it to the vacation town I love, that was a victory in itself! But just getting there was hard won because in the ‘excitement’ of packing for the weekend, I tired myself to the point that I was too weak to transfer into my drivers seat and found myself literally pinned between my wheelchair and the seat, with absolutely no strength left to even maneuver myself to the floor of the car. My vacation excitement quickly gave way to hyperventilating panic. The police and rescue squad came and it took roughly eight of them to extricate me from the car and hoist me back into my wheelchair. After all this, I did NOT want to take the trip south. I waited a few hours and stubbornly decided that this humiliating setback (I’ve had so many over the years that I’ve lost count) would not keep me from getting to Ocean City. So yes, I made it down there. But I cannot help that the trauma of the fall before then seemed to tarnish any fun I might have otherwise had.

Don't get me wrong- I did have fun over the next two days, having family sing-alongs and even a stellar game of UNO-but at the same time, I could not tear my eyes away from the beautiful ocean that mocked me with its inaccessibility. I was able to sit on the boardwalk and soak up the sun and it was sublime...but I had a tough time appreciating the glory of that moment because my mind kept wandering to years before, when I could walk on the beach, not just look at it.

So do I count my blessings and be grateful for the years I spent there as the able-bodied version of myself or do I let those same memories prevent me from enjoying being there again at all? I realize I've gone off on an introspective tangent of sorts but these are the rotten thoughts that so often rob me of my ability to enjoy life in the moment.