Susan is a friend of mine. I’ve known her now for several years. I’ve seen her struggle with the idea that the meds might not be the best thing for her this whole entire time. Conversions of these sorts do not happen without pain. It’s a painful process leaving the cult of the mainstream behind. It’s earth shattering and life changing to shift paradigms. It’s also a wonderful beginning to a new life and journey. I can attest to that as I went through something similar, though for Susan it is even braver and more challenging in that she is leaving her social support system behind for the new.
Susan recently was hospitalized for failed kidneys. My post reports that it was lithium toxicity. Later Susan was told it wasn’t lithium (which she took for over two decades at sometimes obscenely high doses) and that it was either Seroquel, or something over-the-counter. It turns out that as she has poked around some more she has found doctors willing to admit that her history with lithium undoubtedly played a large part in her illness, but only off the record and so she feels they are actively covering each others behinds by not being explicit about it. This sort of blatant BS is exactly what ultimately empowers so many of us to start speaking out.
Here Susan shares her painful process of letting go of the past to grab a new future. Much love to you Susan that the future will bring you what you seek.
Saying Goodbye To My Support Group Hello To A New Kind of One (first published on her blog)
This past weekend I sent a note to the President of my local support group who is also, as chance would have it, the President of the State chapter as well. As of January 1, 2011 I won’t be on the board of either group and unable to facilitate.
Seven years ago I started going to these meetings. And in all honesty, (since I’ve never been anything but honest in this blog) I haven’t gotten much out of them. A lot of war stories that bind us together. The same problems with family and friends, and work issues.
But what I noticed over the years is striking, and upsetting. I’ve seen so many people come in from a long extended stay at a hospital, either private or state. They are on many many meds. I’m not a doctor, but is there a reason that someone has to be on five, seven, nine, different psych meds?
I’ve been on as much as nine at a time myself. Plus other pills to clear the side effects from the psych meds. Upset stomach, migraines, vomiting, even Miridia because one doctor was worried about all the weight I had put on in six months from Seroquel. (Note: He did not tell me to get off the Seroquel, though).
I’ve seen people come in and beg for answers about ECT. I’ve gone down on my knees and told them not to do it, to wait a while longer before engaging in such a procedure. I’ve been told to shut up because they were hell bent on getting this treatment and wanted to hear good things about it. And I can report, sadly, that those in the group who had it, had nothing happen, it wasn’t the panacea it was touted as.
The older I get the more cynical I get. Maybe I’ve spent too many months in hospitals, in the trenches. I’ve seen the bad and the ugly. I don’t know how many useless tears I’ve shed over this.
But this year, I hit the breaking point. To paraphrase Ginzburg, I’ve seen the minds of my generation destroyed. I’ve seen folks come in who were functional, who, now because of the drug cocktail they are on, unable to work and now on disability. I’ve seen the functional reduced to suicidal zombies, with any hopes for the future dashed and gone. I’ve seen people go from fully fully functional to unable to do the simplest tasks for themselves, and if they didn’t have the good fortune to have a husband/partner to care for them would be non compos mentos and most likely in a state hospital or nursing home for the rest of their lives. And I’ve seen those whose bodies have been shattered and practically destroyed from a suicide attempt that failed.
I’ve seen some successes, but those seem to be the people who are just on one drug not a cocktail, and rebound because they have a good therapist, or just rebound on their own when the depression lifts on it’s own, or just by sheer grit and determination to ride it out and conquer it.
I’m tired. In the seven years I’ve been going, I cannot handle it anymore. I am mad as hell. Maybe it comes from my near death experience last month, when I was brought into the hospital and told last week I had actually started to die. Or maybe it’s because I’ve been reading voraciously over the last year, books by Breggin, Szasz and Whittaker, among others. Or maybe I just feel that people with the psych label on them are treated as second class citizens, not as human beings. This flies in the face of the fact that some of the greatest most talented and creative people in history have been labeled bipolar, schizophrenic, or depressed.
Right now I have to take care of me, and I have a long road ahead with physical recovery. When I am able, though, I want to spend the time with other groups I tend to agree with now, like Mind Freedom, Icarus and Psych Rights. I know someone personally who will say I’ve gone to the dark side, but someone has to speak up for those who cannot speak. I was grateful this past month when I could not speak, others spoke for me and got the word out.
Fourteen years ago, when I realized that shots of vodka and Everclear in my Snapple wasn’t going to quell the suicidal ideation, I got sober. I had hit bottom, lost everything I owned and was practically homeless, spending 18 hours a day in a 24 Hour Club. And one of the things I learned in AA was to pay it forward.
It’s time for me in the New Year to do that. Pay it forward.I’m going to miss the old one and I’m still going to be an activist. It’s just a different kind.