About two and half years ago I was hospitalized with very high fevers. It turned out I had a bizarre case of meningitis, which of course was extremely debilitating and terribly frightening, greatly exacerbating my very heat sensitive creeping paralysis. A short time after I returned home from the hospital, I was greeted with a great big gift basket, filled with all kinds of delicious goodies. To my immense surprise, the basket came from a man in Detroit that I had met only a few months earlier, and had exchanged several emails and phone calls with. He was a fellow MS sufferer, and I had little inkling at the time that we would soon develop a long-distance connection that would eventually transcend friendship and approach something akin to brotherhood.
The man who sent that basket was George Bokos, the self-described “Greek From Detroit”, who died early last Sunday morning. Although it seems almost de rigueur to offer such platitudes in this kind of essay, in George’s case the following are the absolute truth: he was one of the kindest, gentlest, most generous and good-natured people that it’s ever been my privilege to know. He was smart and funny, a master of sarcasm. In his own way, for better or worse, he was a force of nature, a tremendously emotional man whose heart was his guiding beacon. His friendship was a gift, his loss a heartbreak, and I will miss him as long as I draw breath.
The burdens and constraints imposed by the miserable beast called multiple sclerosis simply became too much for George to bear, and he exited this life on his own terms. The farewell note he left on his blog ( click here ), though quite forthcoming, only hints at the anguish he suffered. The disease and its wicked gravity robbed him of all he held dear, leaving him bereft of joy, a man whose sense of self was too enmeshed with his physicality to submit to an existence spent bedridden. The ravages of multiple sclerosis broke his tremendous heart and shattered his beneficent spirit. His decline was precipitous, a cruel freefall that proved impossible to break.
I first met George almost exactly 3 years ago, in the office of the Interventional Radiologist who performed both of our CCSVI procedures. I was there with my wife for pre-procedure testing, and George, having had his procedure the previous day, was awaiting his follow-up examination, accompanied by his mom, Hilda. The doctor, who is an avid amateur photographer, hadn’t yet arrived, and I was talking to the office manager, telling her of my photographic efforts using a camera mounted to the arm of my wheelchair. I’d been writing this blog for about a year, and when Hilda overheard my conversation with the office manager, she exclaimed, “Oh my, are you the Wheelchair Kamikaze?” Stunned, I stammered “Yes”, and in a blink Hilda was upon me, showering me with hugs and kisses, thanking me for writing about my life with MS and whatever part I played in helping to bring CCSVI to the attention of the MS population. The four of us had a brief but lively conversation, and then we were on our respective ways. I was tickled by the encounter, thinking it one of those strange bits of serendipity that life sometimes bestows upon us, completely unaware of the bond that George and I would eventually form.
Unfortunately, neither of us benefited from CCSVI treatment. At the time, my disease was fairly advanced and had already forced me to rely on a wheelchair, but George’s MS was far less noticeable, in fact, almost invisible. In the relatively short three years since, MS delivered an unrelenting series of hammer blows to George. It seemed the more he fought, the worse things became, like a man frantically struggling to free himself from a pit of quicksand, his every effort only resulting in his getting dragged further down. He was tortured by terrible spasticity in his torso, and spasms so painful that at the end he all he could do was lie in bed on his side. He tried to find relief by getting a baclofen pump implanted, but this, like all of his other efforts to save himself, only resulted in a cascade of increasingly dire problems, a grueling saga he powerfully recounted on his blog ( click here ) Please note, I know many patients who have had fantastic success with the baclofen pump, and George's experience with it shouldn't be considered the norm.
Through it all, George and I became a two-person support group, usually speaking on the telephone at least once a week, sometimes more. We shared some tears, but much more often laughter, both of us marveling at the mind-boggling absurdities of the hand the fates had dealt us. George had a keen sense of humor, and a quick and sharp wit. Together, we would pick apart our miseries as only can be done by those who share them, reveling in the freedom of not needing to maintain a stiff upper lip in each other’s company. Life with MS is filled with irony and paradox, and though many of our conversations began with a recounting of tales of woe, they almost always ended with us joined in a catharsis of fitful laughter, the two of us trading quips and throwing verbal barbs at MS and all its attendant indignities. He called me “Kazmo”, and it seems incredible that I’ll never again hear that voice on the other end of the line. I will miss him so.
Was George perfect? Of course not, none of us are. At times that big heart of his proved a detriment, and overruled his head. His emotions could get the better of him and effect his decision-making, especially when it came to treatment choices. But who could blame him when faced with so frightening a foe, when so little is known about the progressive forms of MS, and when so many alternative treatments are promulgated and overhyped on the Internet? Fear plays a large role in the life of every MS patient, and George's MS was especially aggressive. Over many years I've learned the hard way that discretion is often the better part of valor, a notion that my friend George had a difficult time putting into practice. But he always meant well and acted with the best of intentions, with malice towards no one.
Unlike me, a man who spent much of my lifetime wrestling with neurotic existential angst despite whatever successes I achieved, George was a man with relatively simple needs and desires, incredibly content with the basic pleasures of a happy family thriving on the fruits of the prosperous business he worked hard to build. As he says in his farewell note, he was in his bliss mowing the lawn, shoveling the snow, or washing his truck, three activities which I would be only all too pleased to pay someone else to do, and if he was still here I’m sure we’d share a chuckle over that one. As is far too common, George’s long marriage tragically fell victim to his disease, and though he battled to remain productive, eventually he had to give up work as well. Losing his family and business, the very anchors of his life, tore his heart out, and inflicted more pain than the disease alone ever could. He loved his children dearly, and his mom Hilda, herself a delight and my treasured friend, was among the brightest lights of his life. She was with him when he died, and says that “he was so happy to finally give MS a kick in the ass that he had a beatific glow and a smile on his face at the last breath.”
I know the “right to die” is a controversial issue, but let nobody ever say that George ended his life rashly, or on a whim. He was simply done suffering the indignities that the disease piles on, the relentless gnawing away of the man he once was. Suffice it to say that the exit he chose was not an easy one. George Bokos was a man who was true to himself, and he took control of his ultimate fate, one of the few things he still had any control over. Proud of his Greek heritage, George remained a Spartan to the end, but it is not that end for which he will be remembered. Though I write this through tears, I know that in time it is only the laughter we shared that will remain. George was one hell of a guy, a unique individual, a true and dear friend, and my comrade in arms. This world is a richer place for having had George in it; it owed him a better fate.
Rest in peace, you crazy Greek, Kazmo will always love you.