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Receiving a diagnosis of MS, or any serious illness, is a reality shattering event. There you are, going about the business of day-to-day life often as if on autopilot, when a huge hairy beast steps into your path, grabs you by the ankles, and drags you kicking and screaming into some strange new dimension. Suddenly, the world is a different place, everything that you took for granted now imperiled, your expectations for the future warped beyond recognition. What once may have seemed quite orderly has now fallen victim to chaos, and however composed one might appear on the outside, on the inside pandemonium has gained a foothold.
Even after many years of dealing with chronic illness, the chasm between what was expected and what has been received can be tremendously disorienting. When dealing with a progressively disabling illness like MS, reality is a moving target. It seems that just when you acclimate to your current condition, some new symptom or event crops up to tear apart even that impermanent reality. The human mind craves at least a minimal amount of order, but in the life of a chronically ill patient, disorder often has the day.
Lately I've been awash in a surplus of muddle and inner tension. The relentless progression of my MS, my dissatisfaction with the results of my cataract surgeries (which I'd had such high hopes for), and a bunch of other nagging health issues have combined to turn the universe into an unfriendly swirl of doubt and confusion. The coming of another holiday season, which starkly marks just how far my disease has progressed compared to holidays past, has also taken its toll. What is this treacherous path that I've been forced to follow? Is there some purpose that can be divined from it? And can this path possibly lead to a destination less ugly than the one I anticipate?
As threatening skies have gathered, I've managed to find some solace by taking shelter in a moment I experienced many years ago, a fleeting instant of understanding, a flash of insight that was gone before I could grasp it, the momentary comprehension that there are indeed patterns and reason and logic that lie just beyond the abilities of our puny, inadequate brains to realize.
I think I've experienced such a moment only once.
In late November, 1993, I was driving back from Key West to Miami, after spending a deliciously debauched but life-affirming weekend at the southernmost town in the United States, in the company of my extremely difficult but very attractive girlfriend. Back then Key West still had the vestigial feel of the Bohemian frontier town it once was, a feel which I understand is tragically now gone. I drove in the approaching dusk of one of those perfect tropical winter afternoons, the sky an endless blue, the balmy air tender as a gentle peck on the cheek. The convertible top of my little red sports car was down, its engine singing its satisfying throaty growl, King Pleasure's "Moody's Mood for Love" pouring from the speakers which lay embedded in the car's head rests, cleverly placed there so the music could be heard above the noise of the open road.
The late afternoon sun infused everything with a glowing pink and gold, and the road we followed was on one of the smaller islands that make up the Florida Keys, just a little spit of land less than a half-mile across, the Gulf of Mexico a few hundred yards to my left and the Atlantic Ocean the same distance to my right. The air whipping around us tasted like the ocean, and with one hand on the steering wheel, and the other feeling the vibrations of the motor through the stick shift, all of my senses were full.
I started to say something to the girl, and glanced over at her sitting to my right. Though she wore big dark sunglasses, I knew in an instant she was dozing, her head cocked gently to one side, her long strawberry hair playing with the wind. In the amber warmth of the setting sun, the sight of her, set in such perfect repose, stirred some secret part of my soul.
I took a breath, and quite suddenly everything stopped. The music and the sound of car and the road around me fell silent, I didn't exhale, I couldn't exhale, the girl and her tousled hair and the car and the sky and the world around us frozen for a pregnant instant. In that momentary pause, I flashed upon the unexpected understanding that I might have a chance at figuring it all out, that there could be significance and purpose to the teeming chaos that makes up a life, that the path upon which I tread might actually have some meaning.
And then it was gone, everything set back in motion. King Pleasure sang another note, my heart registered a beat, the girl stirred, and the march of life continued once again, just beyond the reach of comprehension. I exhaled.
Well, the car was sold about a year later, and the girl and I didn't last half that long. I’ve heard that Key West has since succumbed to the inevitable rot of commercialism, and is no longer the wonderfully strange little place I so loved back then. But for one single transcendent moment, all of these elements came together in a way that still keeps me pondering, in a tableau forever imprinted in my minds eye. In times of sadness, or trouble, or remorse, or confusion, I often retreat to that moment, and somehow find comfort in the wisp of insight into the wholeness of being that it provided.
Zen Buddhists refer to these brief moments of understanding as kensho. They call a deeper, more lasting enlightenment satori. Whatever its name, I'm grateful to have experienced my moment, as its impact has served me as an anchor through troubled times. Whenever the burden seems too great, the road too twisted, when I start getting lost in abstractions like "fair" and "not fair", I can slip back into that moment, and though I can't re-create the experience, the simple knowledge of it and the sense that there are indeed unknowable patterns within all of the seeming randomness grants me at least a few measures of serenity.
I guess some would call it faith...
Beautiful writing Marc. I feel a sudden urge to vacation in the Keys- 15 years ago.ReplyDelete
I've never had a moment like you describe, but once a month or so I have mini moments of clarity. For me, its an overwhelming feeling that everything is OK. Life is good. I am happy and content. I'm generally a content cripple, but not with this level of intensity. It isn't like what you experienced, but it lasts a bit longer, maybe up to an hour.
I try to learn from these moments too, so I can recreate and/or lengthen them, but they seem to come and go on their own schedule.
Hopefully you can have another transcendent moment, but it does take a certain set of circumstances that are harder to find from the seat of a wheelchair (says the guy also stuck in the seat of a wheelchair).
Thinking of you...I'm having my own challenges, as my MS gradually worsens with no seeming interest on the part of my health care professionals to help me. It IS hard to redefine oneself in the anomie that results. You are a fighter, so people will expect you to fight back, to manage these challenges as you have the others, with charm and aplomb. We fighters can't always do that, though, and at these times, the quiet of meditation or a cup of tea in a peaceful room, the view of snow and life outside the window - they help. I find it helpful to have a day where I head out and just smile at people, too. So many are tied up in their daily miseries. Like Tiny Tim, when they see us laboring along, and we smile, it lifts their day, whether by schadenfreude or reconnection, who can tell.ReplyDelete
In any case, they usually smile back, and that cheers me. So hey, win win.
Wishing you peace, tranquility, clarity and better health for 2010.
What a lovely read on a quiet Sunday afternoon.ReplyDelete
I have not had such a distinct moment of clarity as you describe, but there are scattered smaller moments that were close. They were, perhaps, more on the outer edge of what you describe.
I remember sitting in a circle with my small group of friends in the courtyard at Madonna High School. We were on some sort of afternoon out occassion. I am not now, nor have I ever been religious in the traditional sense. However, I loved this girls' school, my friends, the beautiful building, the nuns, just the feeling of the place. As I sat there playing cards and laughing, the whole scene seemed to freeze for a spilt second -- and that split second is with me to this day: the faces, the voices, the smells, the feeling that the world was right, and I was right in it.
Thank you for bringing me back to that today.
Wow Marc. That is a great bit of writing! i wish i could have had moments of clarity like that. right now i feel a flare coming on, 72 hours before a trip to Vegas to see the MIL for Christmas. i think it will have to be me or it and i need to fight it. clarity is not what i usually get in times like this.ReplyDelete
i tend to go for the "moment of surrender" as if the sooner i give up and give in to it i can get past it. vision over visibility i guess...
i too look back on past holidays and see what i WAS and how i could outlast any of my famiily at any gathering and now i am gone and in bed before anyone else. i am not at your point of disbility yet but there for the Grace of God i guess...this damn disease takes so much from us no matter how progressive it is. at least it cant take our memories.
anyway, i am sorry about your progression and the poor results in the cataract quest...hang in there and keep posting.
And I thought that moment of clarity was going to include a 2am beer at a Montreal strip joint back in 1994. Aww, shucks.ReplyDelete
I'm a new fan of your writing and website, Marc. Jacqui and I used to live in Manhattan when we were courting and first married. I love your Central Park video and just sent a link of it to her. She has SPMS and has been diagnosed since the early eighties.ReplyDelete
The moment you described was most definitely a gift. I've had at least one of my own, but nowhere near as colorful a one as the picture your words painted.
Kensho can be a wonder-full thing indeed. I've been there a few times, but then I've been at this business of living (and practicing) for quite a bit longer than you. May you be "surprised by joy" again...soon!ReplyDelete
The trick, of course, is not to cling to the transcendental experience in a life too filled with a seemingly continuous progression of miseries and mistakes. We have to shake it *all* off...the highs, the lows, the inbetweens...in order to be open to the next moment.
But you already know that.
Beautiful writing, as always.