Experience of schizophrenia

I am in the process of reconstructing the old schizophrenia.com Wagblog here, but cutting out the inessentials. So I will start with the second entry, making only those edits necessary for clarity. Otherwise it has been left almost entirely as it was, starting back in 12/03 through 3/2008.

SELECTION FROM THE EPILOGUE TO “SOLO FOR TWO” (later DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia, St Martin’s Press 2005)

What follows is a draft of part of the epilogue to our book, not as it finally came out though:

As I read Lynnie’s description of my first hospitalizations in the fall of 2003, which ECT during the second has largely erased from memory, I was by turns horrified and ashamed-disrobing and racing through the hospital ward in my birthday suit, moving my bowels on the floor because my bathroom door wasn’t unlocked quickly enough, how is that possible?-and saddened to have caused someone who loves me so much anguish. It is not easy to be psychotic, of course; it is a horrible, frightening and debilitating condition, the after-effects of which can last for months, if ever they are gotten over entirely. But I had never understood quite so viscerally how difficult it was to be the largely helpless sister of someone who is psychotic. Heedless of my effect on others-nursing staff, friends, family-I lived inside the nightmarish fragments of a time and country beyond understanding, the shattered-glass nano-seconds of an everlasting present that had no connection to shared time or to anything or anyone. I was literally in a world of my own. Small, terrifying and constricted as that world was, it was all I knew. I don’t remember the whys and wherefores of my raging and outrageous behavior in September after I came out of my catatonia, and due to ECT I recall even less about my second hospitalization the following month. Perhaps this is for the best; I suspect I did not behave like the kind of person I want to be seen as, even perhaps usually am, when not in the throes of madness.

But madness it was, as anachronistic and moodily romantic as that term always strikes me. What else would you call it? I had no idea what I was doing or why, I acted solely upon impulse, delusion and hallucination, and for a long time I cared little whether or not anything I did had any rational basis or the slightest foundation in a reality that other people participated in. In catatonia, I abdicated living, not by choice it is true, but nevertheless, being for that time effectively lifeless. And I came close to relinquishing life altogether in my compulsion-governed by the command hallucinations of the Biohazmat Man-to immolate myself in atonement for heinous but in the end imaginary crimes. My sin was in being, and to atone I had to un-be, to burn in my own version of hell, literally to give myself over to the flames.

Schizophrenia is hell, that is obvious to anyone who has had to deal with a psychotic person. It’s a place where strangeness lurks around every corner and terrors reside within every shadow, a netherworld where nothing works and the ordinary rules of life don’t apply. But this hell is not just for the immediate victim, as Lynnie’s account makes so painfully clear. Though in the end no one is to blame, my experience with mental illness has torn my whole family apart in ways no one who knew the golden girl I once was could ever have foreseen. Abundantly talented and intelligent, once seemingly destined for great things, I have lost nearly everything I once had to this horrendous disease. Though my siblings are unerringly supportive and caring, none of them like to spend much time with me. My mother wavers between loving encouragement and avoidance of the painful reality of what my life has devolved into. And to this day my father, in his steadfast state of denial and his fear of the truth, refuses to talk to or even be in the same room with me. I understand him, I understand all of them, and therefore I forgive him, but I can’t say this stops me from feeling the occasional spasm of rage when I hear of him referring to his three children when he has four. Surely, if I am not in fact Satan, I did not willfully choose to become ill, so this continuing rejection of me, his firstborn, has to be undeserved and profoundly unjustified. If there is any, the one small comfort I have is in the knowledge that whether he knows it or not, this is as great a loss for him as it is for me.

I have always been an outdoors person. In the past, I spent many weeks camping with my family and endless hours playing in the weeds and fields as a child. Later on, smitten by wildflowers, I became an amateur naturalist. Starting in my early 20s and continuing well into my 40s, I spent days upon days wandering the woods in my passion for field botany. A tick bite, at the time, seemed a minor, almost insignificant irritation. Then, after having been stable for four years on a low dose of Zyprexa, came that disastrous Y2K episode, filled with bizarre symptoms like extraordinarily vivid visual hallucinations and an extreme startling reaction to all stimuli, which exploded my world to smithereens. Finally in the fall of 2000, with a relatively recent history of both tick bite and rash (in 1998, followed by several serious but suspiciously indeterminate illnesses), I was finally diagnosed with neurological Lyme disease. Started on antibiotics, I improved a little. Still, the damage was done and the relapses did not cease even then. But both Lynnie and my Lyme-specializing neurologist have left open the question whether my schizophrenia and/or narcolepsy might have been induced years ago by long-standing, undiagnosed and untreated Lyme, acquired in adolescence or even before. I myself cannot say, and the issue may be moot, since nothing has helped me to any greater degree than ECT and anti-psychotic drugs, Lyme or no.

However, in her practice, my sister has seen Lyme disease cause any number of untreatable psychiatric conditions that do resolve with the use of antibiotics, and so it behooves me to keep an open mind to the possibility that a spirochete, specifically the Lyme bacteria, Borrelia burgdorferi, has been the agent of all my troubles, leaving in its wake permanent brain damage and a legacy of severe mental illness.