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Living with Remission

My days are serene yet full of purpose:  reading, writing; tending to the small potted plants in my writing room; grooming and training my dog; reaching out to the people neglected in the acute phase of my illness; interacting with loved ones in a relatively normal way.  I am full of hope that this time the productivity and satisfaction with my life will last forever, though I know from experience this isn’t possible.  Only a few weeks ago I spent my days lying in bed with the shades drawn against the brightness of the day and my eyes closed against everything in my Spartan hospital room, or sitting on the “smoking patio,” avoiding eye contact with the others seeking solace in nicotine.  I dressed in loose, blue hospital scrubs, the badge of those of us locked in the small psych unit in a large hospital.  I stared at the “soothing” neutral-colored walls, seeing nothing, my shoulders slumped in defeat; the mental illness I have lived with for over five decades had won yet another battle in the war for control of my life.

Now I have stepped out of the tunnel into the light barely glimpsed during the days in the hospital and though I know I am not destined to remain here forever—or perhaps even very long—I don’t truly believe that.  Remission brings its own distortions of reality.  The reality is that something I may not even recognize as stress has the power to send me back to the tunnel or—worse in some ways—the too-bright kaleidoscopic world of mania.  There is a motto—a promise of sorts—stenciled onto the wall of my writing room that reads:  “The next remission is as inevitable as the next mood episode.”  Experience tells me this, too, is true, and while I find it comforting when I am ill, it isn’t something I dwell on during periods of remission.  I am quite knowledgeable about the disorder that has affected my life for as long as I can remember, both from experience and from extensive research.   Nevertheless, when the peace of remission settle on me like a mantle, I begin to believe that if I do all the “right things,” I can remain in this state indefinitely.  This is the distortion of perception in remission; no matter what I do or don’t do, someday—maybe not today or next week or even next month…but someday—I will descend onto a gray, arid, featureless plain or even into the darkness that convinces me I am nothing, less than nothing, unworthy of life…or soar into the false celestial music that convinces me I am invincible and entitled to take whatever I want whether from loved ones or total strangers.  While my perceptions in both states are distorted, are they really any more unrealistic than my refusal to recognize the inconstancy in my life is rooted in neurobiology over which I have as much control as I would over a malfunctioning pancreas that can no longer regulate blood sugar?

If biology is truly my destiny—though not in the way feminists so eloquently rail against—I must admit it isn’t all bad.  I joke sometimes that normalcy is highly overrated, though at a deep level I take that seriously.  However much I may lament the losses that have resulted from this rollercoaster ride of a life (two marriages and countless friendships to date), I also value the entwined threads of personality and brain disorder that have produced the intensely emotional and creative woman I am today.  I can no longer distinguish disorder from personality, and it is only in remission I think I see what might have been—perhaps yet another distortion—and crave this relative peace, the ability to trust my judgments, to have me teeth not embedded in my tongue to keep from saying things I will regret later—or worse, to give free rein to my irritation with lesser mortals.  Perhaps I can appreciate the “normalcy” of remission only because of the contrast to the changeability that is informs the rest of my life.  Do I dread the next bout of darkness or chaotic destruction?  Of course I do; I will continue to take medication, structure my days, and stick to my sleep schedule to ward them off as long as possible.  When they come despite all that, I will endure—something else I have learned from this illness—until the next remission, which after all, is inevitable as well.

by Pamela S. Carter

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