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Michael Bihovsky Biography

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“Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.” “Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it. Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it. But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone... A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.”

“To those in need of healing, Who can never quite be healed: May curses be your blessing, And may weakness be your shield. To feel despite the numbness, And to hear the silent sound. To see there still is meaning When no answers can be found. I hope you’ll keep on searching, While you also search no more. For know that sometimes healing Is far different and far purer and far greater than a cure.”

“We have a genuine and devastating epidemic of opiate abuse in this country, and it is of critical importance that this problem be addressed. But we must do so in a way that doesn’t cut off an effective (and often the only) treatment for the chronically ill, many of whom are able to function in this world at all only because of the small respite that responsible opiate use provides.”

“We liberals and progressives need to do a better job at verbalizing what we are for, and not just what we are against. If we want a public option, we must make the case for it. Every time the Republicans start talking about the corruption, waste, and negligence of “Big Government,” we should talk about those same qualities in Big Corporations. If we want to end factory farming, decrease income inequality, and end discrimination in all its insidious forms, we must fight for those things and so much more. It is a subtle but important difference to stand for equality rather than to merely stand against inequality, and I believe that within this positive framework, more transformative arguments can be made.”

“Learn as much as you can. Part of this learning will be your art, learning all aspects of your craft in depth and always challenging the boundaries of your style and comfort zone. But also study the world, literature, philosophy, politics, science—all the things that combine to form life as we know it. Because art is the portrayal of life, and the more you learn, the more you will have to call upon and be inspired by. Finally, don’t be afraid to market yourself. No one else will do it for you. Know what you’re capable of, and do not rest until others see it, too.”

“My doctors, who are not cavalier with prescriptions, give me this medication because I have earned their trust. And yet, with mounting government and public pressure, my doctors’ hands are becoming increasingly tied. They apologetically explain to me why they are required to make the medication even harder for me to get, against their own medical judgment. If the day ever comes when they aren’t allowed to prescribe Percocet to me at all, it may well be the end of the minimal quality of life I fight so hard to achieve.”

“Since my symptoms began 13 years ago, I’ve tried every form of pain management I could access — NSAIDS, nonopioid analgesics, neurologic medications, acupuncture, laser therapy, physical therapy, prolotherapy, massage, and trigger-point injections. Most of these have been unhelpful; others provide temporary relief, often at great expense. At the end of the day, when my body is fully depleted of its resources and in the most pain, a single dose of Percocet is the only tool that silences the pain enough for me to fall asleep. I honestly don’t know what I’d do if Percocet became unavailable to me, and the very thought scares me. I’ve been taking it for five years. To avoid any chance of addiction, I only take it at night and have stayed on a consistently low dose.”

“EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.”