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...

Monday, July 6, 2015

Back from the NIH: Unfortunately, Nothing Dramatic to Report

Well, I’m back from my sojourn to the nation’s capital in search of answers regarding my ever progressing and relentlessly stubborn illness. Sorry it’s taken so long to report back, but the trip left me pretty exhausted, and for the last week or so I just haven’t been myself. Oddly, I think I’ve been Ethel Merman, but that’ll have to be a subject for another blog post…

On the evening of June 23, Karen and I packed ourselves into a rented wheelchair accessible van and hoofed it down to Bethesda, Maryland (just outside of Washington DC) for a visit to the National Institutes of Health, where I was examined by members of their neuroimmunology and endocrine teams. I haven’t yet received a final report, but it doesn’t look like any new discoveries or insights were made about my condition. Despite the fact that I try to keep my expectations in check, this time around I thought that maybe, just maybe, some aspect of my disease would raise its ugly little head high enough to be recognized by one of the doctors handling my case. I’ve been feeling particularly cruddy the last several months, so I thought that perhaps some kind of shift might have occurred that would lead to an “aha” moment. Alas, it appears ‘twas not to be…

The NIH is the US government’s primary medical research organization, and is staffed by some of the best minds in the business. As a taxpaying US citizen who also happens to suffer from a chronic illness (and who is also a bit of a medical research wonk) my visits to the NIH are always interesting, if only to see firsthand our tax dollars being put to good use. For those qualifying for the NIH’s many ongoing studies, treatment is absolutely free, and the NIH Clinical Center, located on a sprawling campus packed with research facilities, is top-notch. Though I’m no longer part of an NIH study, once you’re in you’re in, and I’ve been making semi regular visits to Bethesda ever since 2009 in my quixotic quest for answers to my medical conundrum. Hey, I used “quixotic” and “conundrum” in the same sentence! Bonus points!

This time around I saw the MS neuro who is in charge of my case, Dr. Irene Cortese, as well as a member of the NIH’s endocrine staff. I underwent a full neurologic exam, had MRIs done of my brain, spine, and pituitary gland, lots of blood taken, and had few functionality tests thrown in just for good measure. All of this over the course of two and half days, which made for a pretty grueling schedule. Especially since the NIH doesn’t keep to my nocturnal ways, forcing me to acknowledge that yes, there is such a thing as morning. As a matter of fact, on day two of our visit I had to get up at the ungodly hour of 5 AM to be ready for an early morning MRI appointment, and getting up at 5 AM is NOT in my repertoire of favorite activities. As a matter of fact, going to bed at 5 AM is more my style. Maybe the NIH should have tested me for vampirism. Just call me Count Gimpula.

As I mentioned, I have yet to receive a final report, but I do know that my MRI images were once again unchanged, which is no surprise since they haven’t changed at all since I was diagnosed over 12 years ago. Same two lesions as always, one tiny spot in my brain (again termed “insignificant” and perhaps not even related to my illness), and a big juicy one right at the top of my spinal cord, where it connects to the brainstem. Not a great spot for a very invasive lesion, as there’s lots of important stuff going on in that area with little extra real estate available for any rewiring or other physiological workarounds. My neurologic exam confirmed that I have gotten significantly weaker over the last year and that my muscles have noticeably atrophied. Some of this atrophy might be attributed to all the weight I’ve lost, which in turn might be attributed to my endocrine problems. No surprises there, either.

Speaking of my endocrine problems, I was seen by a member of the NIH’s endocrine staff, a young “fellow” (this particular fellow happened to be a woman), who while quite diligent didn’t seem to want to even try to integrate my myriad endocrine dysfunctions with my neurologic problems. This is one of my pet peeves with modern medicine – it’s become so damned specialized that each individual specialist views the patient through their own very narrow lens, making it almost impossible to find someone to put together all the pieces of the puzzle. The situation is kind of like that old parable about three blind men trying to describe an elephant. One feels the trunk and thinks the beast is a very large snake. Another bumps up against the elephant’s leg and declares that he’s dealing with a tree. The third reaches out and touches the animal’s side and says he’s come across a wall. All very reasonable assumptions, but all quite wrong.

And here I am, presenting with a wide assortment of debilitating symptoms that to me scream “weird systemic disease”, but each specialist I see concentrates only on one very specific aspect of whatever it is that ails me. Sure, I suppose it’s possible that my neurologic symptoms are completely divorced from my endocrine symptoms which are completely divorced from some of my other strange findings, but common sense would seem to dictate that there must be some common thread running through all of them. But I guess I’m just the Count Gimpula Elephant Man who every now and finds himself turned into Ethel Merman, so why look any further? Shouldn’t I at least have my own reality show?

My pituitary MRI showed that I do not have a pituitary tumor, which counterintuitively might actually be bad news, since pituitary tumors are almost always benign and very treatable, so if I did have one something could be done about it. I do suffer from something called Empty Sella Syndrome (click here), meaning that the space in my skull that should be taken up by my pituitary gland is largely vacant due to the fact that my pituitary has shrunk or become flattened. Why? Who knows? I’ve never gotten an answer. I’ve known about this condition since around the year 2000, but somehow this further physical weirdness never seems to get fully factored in to my complicated diagnostic mess. Really though, since it's so evident that I'm the Ethel Merman Count Gimpula Elephant Man, why bother?

So, there you have it, a nutshell summary of my trip to the NIH. The actual trip itself was okay, aside from the fact that the hotel in Maryland decided to forget that I’d reserved a handicapped accessible room so I could barely get into the bathroom the first night of our stay (we didn’t arrive until after 1 AM and had to be out and about by midmorning the next day, so the mistake wasn’t calamitous), and getting back was a slow 7 ½ hour crawl through Northeast corridor traffic, which was none too kind to my crumbling hips. Still, nothing ventured, nothing gained, even if it doesn’t look like very much was gained. Who knows, maybe once the NIH doctors convene and go over all of my test results something will have revealed itself and I’ll be pleasantly surprised with the final report, but I’m keeping my expectations to a minimum.

Much thanks to everybody who sent me well wishes and notes of support, all of them greatly appreciated. In return, I give you this very private video of me recovering during the week after my return from my visit to Bethesda, when I still wasn’t quite myself…