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Those of us who have received a diagnosis of Multiple Sclerosis, or any other potentially devastating illness, have suffered through our own very personal versions of Hiroshima. Not to minimize the horrific effects of the atom bomb, which literally vaporized tens of thousands of human beings and created never before imagined levels of destruction on the ground, being given a serious diagnosis has an A-bomb effect on the life and emotions the patient hearing the news. There is the blast-like shock of the sudden confirmation that something has gone terribly wrong with your body, the firestorm of searing fear about what an abruptly uncertain future might hold, and the unknown implications of the long-term effects of the illness, much like the silent but lethal radiation that plagued the survivors of the initial atomic attacks.
Similar to the residents of Hiroshima, who lived in a city that had somehow been spared the horrors of a war that had thus far kept its distance but of which they were nevertheless acutely aware (the city had been left untouched by the Allies so that a pristine target would be available for the first A-bomb), many MS patients suspect that their bodies are betraying them long before being given an actual diagnosis. Most MS patients, myself included, experience strange physical symptoms for years before the disease finally outs itself enough to be picked up by medical diagnostics.
At 8:15 AM on that long-ago sunny August morning, the citizens of Hiroshima were well into their daily routine, leaving for work, preparing for school, finishing breakfast, embarking on another day. The war had ravaged nearby cities, and had caused them privation and worry, but had no tangible physical effects on their own city. Sixty seconds later, Hiroshima was a smoldering ruin. In the days and weeks and years before their eventual diagnosis, MS patients too go about their daily business, nurturing relationships, starting families, building careers, taking their futures almost for granted, secure in the illusion of the stability of life. Once the verdict of MS has been returned, though, that illusion is blasted to pieces, the tenuous underpinnings of life suddenly revealed by the explosive light of illness.
In the months and years that follow, the destruction wrought by the disease differs from patient to patient. Some fortunate folks can go years, and even decades, with their disease largely undercover, perhaps only rarely punctuated by periods of acute illness. Others are not so lucky, their malady an aggressive and hungry beast, quickly devouring physical and mental abilities, and with them relationships and careers, hopes and dreams and expectations of what was supposed to be.
Like the surviving victims of the atom bomb, a transformation occurs among those given a bitter diagnosis, not only to mental and physical capacities, but to the very perception of reality itself. The past is severed from the present, a museum piece to be looked back on sometimes fondly, sometimes with regret, but always as an object that stands alone, as if from another life. The future, well, the future is a fragile thing, a delicate vessel of spun glass, filled with a dash of hope and an abundance of fear, so easily broken that one often averts their eyes for fear that too long a gaze might shatter it.
Best to concentrate on today, and like the survivors of a smashed city, do the very best that can be done with what remains, and not linger over all that has been lost. With everything that it takes away, the diagnosis of a serious illness bestows upon those given it the certainty of the incredible preciousness of time, the knowledge that this finite gift, which grows ever scarcer with each passing second, should not be wasted but savored, despite whatever hardships must be overcome.
"Seize the day" may be a tired platitude, but for those with progressive illness, the day should indeed be embraced, and the time held within used with purpose, thought, and even joy. Depending on one's changing mental and physical condition, the day may best be spent at work, play, or rest, but should be mindfully and willfully devoted to its greatest use. A glance back at the past will undoubtedly reveal much wasted time, and that fact should inform a present in which every effort is made to eliminate such waste. We will never again have today, and imbued with the knowledge of the dearness of time, we must try our best to enjoy each new dawn for what it most definitely is, a celestial bequest soon to be withdrawn and replaced by tomorrow.
As patients, we can draw hope and inspiration from the ultimate fates of Hiroshima and Nagasaki, as each city has risen anew, its citizens rebuilding streets, structures, and lives. Today, both cities are bustling metropolises, and the two nations whose struggle to the death resulted in the cities’ absolute destruction are now the best of allies, the once bitter enemies now friends and partners in a world so different from the days of their enmity.
MS patients, too, are watching a quickly transforming landscape, one finally showing glimmers of hope in the form of stem cell therapies along with promising new research in neuroregenerative and neuroprotective compounds and strategies. Finally, the clouds appear to be parting, and even if some of the roads now being researched turn out to be less fruitful than anticipated, the very act of traveling down them will open up new vistas for investigation, new avenues for discoveries perhaps not yet dreamed of but with profound implications.
We've entered an age of patient advocacy unlike any that has been seen before, and those to whom fate has in the past been dictated now have a voice to shout back with, and an understanding that the status quo is simply unacceptable. Without hysterics, but in a steady and rising crescendo, we must insist that new ideas be taken seriously, and demand that the vested interests of those who have profited from our collective misery not hold sway any longer. A revolution is slowly building, and with the help of dedicated physicians and researchers, we can and must become the driving force behind new ideas and new efforts that will transform the smoldering wreckage of what was into a gleaming future filled with hope and renewal. As Hiroshima and Nagasaki stand tall today, so to, both figuratively and literally, will the MS patients of today and tomorrow.