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It looks like I'm going to be on only the Abilify sooner than expected, because the pharmacy belatedly, very belatedly indeed since we asked them for a cross reference twice before, discovered a serious interaction of Biaxin, which I can't stop, witrh Geodon, and I found one of Haldol with Geodon...I hope to get off both Haldol and Geodon very quickly.
THe following is part of a draft of a new piece I am writing for our next set of speaking engagements. I thought you'd like to be in at the start of my writing, though you all know how much I polish and polish. I might even end up not using any of this at all, but for now, it is what it is.
...Medication is a powerful tool in the treatment of schizophrenia. It can make the difference between chronic illness and recovery and I would not be standing here to day without it. Talk therapy too. That has been much underrated in the recent past, yet it is essential. But the power of love is the power of hope, and it kept me afloat many times when I lost all hope for myself. Because someone else kept that flame alive for me, most often that person being Lynnie, my twin sister, I managed to survive, even when I least intended to and didn’t become one of the terrible statistics that haunt this condition; historically, 60% of patients with schizophrenia attempt suicide at least once and 10-15% succeed.
Having a twin sibling must be different from having a mere brother or sister, no matter how close. It is true that many's the time that Lynnie and I were out of touch, when others in our lives appeared closer to us than one another. Indeed, for several years, I did rely on other friends and other professionals rather than “bother” my twin with my problems; but once she accepted them, once I broke down and told her, once she saw them for herself, she couldn’t have been my greater advocate, no matter how little she feels now that she did.
I knew what she was fighting: the establishment clearly wanted nothing from her but silence, just as it wanted nothing from me but complete compliance and unquestioning obedience. The doctors who were in closest contact with me all saw that I had schizophrenia and said so on my many hospitalization papers, but the still-in-training social workers and psychologists of the day treatment program I went to for several years decided that my non compliance with the dreaded medication regimen, my chronic inability to look at people, and other bizarre behaviors like eating garbage from the trash rather than going to the cafeteria for meals, constituted “borderline behavior,” which had to be brutally tough-loved, which really meant abused, punished and humiliated out of me.
Lynnie herself understood abuse was going on, and felt helpless even as she knew it was the kind of climate her training had inspired in psychiatric communities. Psychiatry may have stopped blaming mothers for causing schizophrenia, but now by calling schizophrenia a functional disease, it was blaming the victim. Functional meant something the patients unconsciously chose and could control, but that also meant it was something they could choose not to have. In any event, fearing to do me more harm than good -- the staff reacted very poorly to family interventions -- she refrained from interfering, even when she felt I was being mistreated, though she unfailingly told me when it happened. Oddly, I felt protected, because she was at least there witnessing.
Finally, though, she had had enough and did step in, to save my life; it was no surprise to me...after all, she was my twin sister. She was not going to let me die in their care just because they said it was the best of care.
Our twin bond is a mystical thing. It may play out in the daily world as nothing much more than sisterly affection or an uncanny agreement, but to me, she is what my life is about and I could not live without her Although we no longer look alike, we still complete one another’s sentences and get interested in the same thing independently. For example, just last spring, she was studying Italian at her end of the state while unbeknownst to her up in mine I was looking for an Italian woman to exchange languages with. And many other such coincidences that no longer seem coincidental to us, but part of our normal daily lives. I may never have felt romantic love, but I love Lynnie, I know that, and I know she loves me.
Love is a powerful force between people, even in a brain-based disease. Perhaps it is more powerful in a brain disease than in others, because love is experienced by the brain. I don’t know why in the end, I clung so, clung to hope. I tried many times to avoid living. I tried to become a statistic. In Sept 2004, I set my leg on fire, and just last February during my last hospitalization, I had to decide whether or not to immolate myself or stay alive, those were my only options, that’s what my world had been reduced to. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness and it made a life’s worth of difference.