Wednesday, July 29, 2015

Moments of Clarity – Repost

(Sorry I've been scarce lately, been fighting a really bad case of the creeping cruds that has kept me in bed the last few weeks. Fever, no appetite, weakness, all on top of the progressive MS stuff. Needless to say, not much fun at all. Just started my second round of antibiotics, so I expect things will get better soon. In the meantime, lest you think I simply vanished into the ether, here's a favorite old Wheelchair Kamikaze post of mine, back from December 2009, when this blog was not yet one year old. Rereading this essay after all these years reminded me that I really need to get back to my meditation routine and Zen Buddhist leanings, as I've let them slip these last few years. Anyway, hope you enjoy, and I'll  post something new just as soon as I'm feeling up to it…)

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 rules 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, a 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 in the company of my extremely difficult but very attractive girlfriend, after spending a slightly debauched but life-affirming weekend at the southernmost town in the United States. Back then Key West still had the vestigial feel of the Bohemian town of last resort it once was, a feel which I understand is tragically now lost. I drove in the early 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. 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 blonde hair playing with the wind. In the amber warmth of the setting sun, the sight of the girl and the feel of the car and the sound of the music stirred some secret part of my soul. 

I took a breath, and quite suddenly everything stopped. The music and the car and the road around me fell silent, I didn't exhale, I couldn't exhale, the girl and her tousled hair and the automobile and the sky and the world around us frozen for a pregnant instant. In that momentary pause, that crack in time, 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 direction. 

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 all things 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 unseen patterns within all of the seeming randomness grants me at least a few measures of serenity.

I guess some would call it faith...

Here's King Pleasure and Annie Ross, singing the song that accompanied my moment of clarity all those years ago… BTW, the title of the track is "Moody's Mood For Love", just for the record...


  1. Lovely! I used to meditate. My Dad ran us all through TM training when I was in my early 20's. I was pretty faithful, twice a day, for years, but fell away and returned to it off and on, never getting more than another year or so under my belt again. Unbelieveably, I have not done it more than 5 days in a row since being Dxd 12 yrs ago. I know it would have helped.

    As for you, rest up, heal up and return to us. Thanks for rallying to produce the repost--you have been missed!

  2. Dear Second Son,
    Beautiful, evocative words.
    Heartbroken (what is left of this heart) over your suffering.

  3. Mark :) thank you very much for this beautiful post. I also retreat to memories of the moments of serenity and comfort (I have a few). Meditation to heal the pain for a moment. What else is left to do ...
    Love :)

  4. Great to hear from you Marc. Hope you are feeling better very soon.

    I struggled with meditation for a few months before I stumbled upon an app called headspace - I now meditate nearly every day and am getting better at practicing mindfulness. Some of my MS related symptoms are better too, especially my struggle with anxiety.

  5. Translated from Italian into English with Google translator.

    To all of you with MS, from RR to the Progressive I recommend you use, at no cost ZERO, My Favorite drink, revealed a very broad spectrum of PANACEA in all disease-CNS diseases, central nervous system, MS in particular, with Indeed, almost immediately, max a week, better sleep, more energy in the morning, less anxiety, better memory and, over time, after three months, regularization of the total hours of sleep, reduced elimination of muscle spasms and other . If combined, in salads daily, to cactus Opuntia cladodes indicates, purslane herb or porcelain, flax seed germinated, 0.6-1.0 max powder Ginkgo Biloba, yellow gold and ever green, and olive oil EVOO, yellow gold dense live to the mill, from ripe olives, with mesocarp inner flesh-colored purple live up to Endocarp-dense core, the improvements will be felt first by improving digestion digestive flora .We enclose post of my drink: ;

    Versione ITALY : Tradotto, da italiano in inglese, con Google traduttore .

    A tutti Voi con SM, da RR a quella Progressiva vi consiglio di utilizzare, a costo ZERO, la Mia Bevanda preferita, rivelatasi un PANACEA a larghissimo spettro su tutte le malattie-patologie del SNC, sistema nervoso centrale, MS in modo particolare, con effetti, da quasi subito, max una settimana, di miglior qualità del sonno, maggior energia mattutina, minori stati di ansia, miglior memoria e, nel tempo, dopo tre mesi, regolarizzazione delle ore totali di sonno, riduzione eliminazione di spasmi muscolari ed altro . Se abbinata , in insalata giornaliera, a Cladodi cactus opuntia indica, Portulaca o erba porcellana , semi di lino germogliati, 0,6-1,0 max di polvere di Ginkgo Biloba, giallo oro e mai verde, e olio di oliva OEVO, giallo oro denso vivo al frantoio, da olive mature, con mesocarpo-polpa interna di colore viola vivo denso fino allo Endocarpo-Nòcciolo, i miglioramenti si avvertiranno prima per miglioramento apparato digerente digestione flora batterica .Vi allego post della mia bevanda : ....

  6. So sorry to hear of you going through even more than what you have endured. Thanks for reposting your blog, it is moving and the writing is exquisite. I continue to hope for your healing. Audrey

  7. Marc, I'm sorry things are so difficult for you right now. Kensho moments are wonderful. Others have mentioned meditation, and that's pretty much the only time I ever experience anything like that. I aim to meditate before starting my day and mostly do. But sometimes the intention gets lost in the rush to enter the chaos of the day. Aren't we smart to let the day engage us that way, eh? But, except for a conscious effort to do something like meditation, entering the chaos of the human condition almost seems reflexive. I hope you find relief, solace, peace, whatever makes your life better.

  8. I started reading your blog yesterday when I looked up progressing MS with no changing MRIs. I have been reading for hours since then. I find your blog so interesting. You are such an intelligent writer and investigator. I lost hope for a while now and you give me hope that there could be an answer to slowing this disease down. I eat well I exercise I'm at 20 percent body fat I do everything stay healthy but I am still in a wheelchair. It's almost two years since I moved I was walking before I moved but it seemed that the stress of moving put me in a wheelchair. That's my guess anyway. I pray to God that I could walk again But if I can do something to stop this from getting worse I need to find it. Right now I'm investigating Medicines and lifestyle to find out if anything I am doing is hurting me. I take vicodin for pain, about four pills a day. I have pot but I'm afraid to smoke, afraid I might lose the well working mind I still have. I take blood pressure medication. I think the vicodin might be the reason for that. I'm trying to figure out if exercising my legs is helping me or the stress of it is making me worse, more fatigued. I dislike the fact that sometimes I rather be alone then to watch somebody pity me. I think the isolation Puts some stress on me but when I'm alone I do not have judging eyes on me keeping me from day to day accomplishment because they want to make themselves feel better by helping the handicapped person. If they went the extra mile and encouraged me as I did something then picked me up when I fail well that might be too much for them to offer.

  9. Dear Marc,
    This re-post was very important. It made me go back to your very first post and some just following that one. Thought I could get a new perspective on your MS travails, as well as my own. it was a painful trip back; almost 6 years trying to tread water...I guess it just made me sad and angry...Not a good place to reside.

    Hope you are doing better. The hardship to your body from making that long trip to the NIH must have taken a terrible toll.

  10. Marc, your taste in music is the same as mine - love King Pleasure, love this version. Have you ever heard Georgie Fame's cover? Also very good. Any changes since biotin?

  11. Something different today. I'm going to be grateful that I woke up this morning and was able to get out of bed and into my Wheelchair. I'm grateful for not falling in the shower or when I was taking my 20 steps with my crutches. I'm grateful the Sun is out and that i didn't choke on the food I had for breakfast. I'm grateful my pain pill took the edge off of my pain I have through my entire body. I am grateful that I am able to put two sentences together to write this paragraph. I'm very grateful I have a phone With speech to text so I don't have to type this but also grateful I am able to type. Who knows how unhappy I would be right now if I was still in the rat race of getting up early every morning and going to work. I remember constantly saying I need to hit the lottery so I don't have to go to work anymore. Woohoo is this hitting the lottery!

  12. I am sorry you are having an especially difficult time lately. I wanted to write and tell you that I think you are *by far* the most talented writer on MS from the patient's perspective. Your intellect and your talent have enriched the lives of so many of us in this community of MS'ers. What you have done here is so important for all of us, our families, and medical professionals. So important. I sometimes (ruefully) joke that it is time for an multiple sclerosis version of ACT UP, but it is so difficult to organize because we are all struggling with our different types of issues - fatigue, mobility, other issues. I hope one day it will be possible to organize and push for reforms at the MS Society and other research/funding priorties. Best wishes to you - I hope things improve for you very quickly.

  13. Hello Marc - it's Suzanne from Canada. I think of you often and while I have told you this before, I am compelled once again to tell you what a difference you have made in helping me deal with my own unhappy MS journey. I am so thankful. And I don't think I am alone when I say unabashedly that I care for you very much and wish you a speedy relief from this extra unneeded crapola. Hugs❤️💛💙💜💚

  14. Hello Marc I have experienced kencho and satori. I was at my worst but at my best as I like to tell people who may listen. I did not realize the terms but I realized time literally stopped and was telling. I had a profound sense of a message….I am learning to LISTEN and TRUST.
    I am suffering from PPMS which is gift giving almost daily. My major loss is my ability to muddle thru the day clearly. Especially now as I am divorcing a individual with a addiction secondary to being a cancer survivor. My life skills dealing with PPMS and his problems were not adequate. I will be financially hurting and isolated……. I am frightened.
    Reading your blogs give me hope.

  15. We miss you Marc , hope you feel bettet soon