Amy Upham was a recent guest on the Proactive Planning Blog Talk Radio show…you can listen to her story here at the show page.
Below is a follow up essay that Amy wrote at my request.
I was asked to write a follow up article to my interview on Proactive Planning’s blog talk radio show. I am really glad about that because there are some things I want to clarify and expound upon.
The first thing that struck me in listening to the interview was that I said I am not against (psychiatric) drugs but that I am also not for them because I do not know enough about them. What I meant by that is that none of us do, including psychiatrists. We do not know enough about the brain, period, to be altering it so dramatically on such a large scale. Psychiatry is a profession trying to find a reason to exist, when neurology does a better job of studying and treating real brain diseases, but even it knows very little. The whole brain scan thing causes me much amusement because now diagnoses can be made from measuring brain activity with colors on a screen? Oh, I have to lol there. Why would we want everyone’s brains to light up in the same way? Isn’t that…preposterous? What passes as science in psychiatry is the stuff of absurdist playwrights like Edward Albee to use as matter for their art.
Even though I was an English major in college, just for fun my senior year I took an advanced Human Physiology class, because the human body interests me. I have a fairly good understanding of human anatomy and biochemistry because of my brief college experience, self-study and because my mother was a chemist and a very good nurse; I am routinely appalled that counselors or social workers, most who do not have more than a 2 year Masters degree in, essentially, human relationships—not biochemistry, counsel their clients to take and continue taking their drugs. I have 33 credits of a Masters in Social Work and I can tell you that there is not one class, nor one day of one class, where biochemistry is discussed in detail. There is however a very involved study of the Diagnostic and Statistical Manual (which has no statistics in it) and an almost religious worship of the myths contained therein. Humanists go wild over the book because it gives a seeming scientific explanation to suffering, where religion seems to fall short. I left religion some years ago because of my own humanist leanings, but I’d be more apt to return to those walls than the walls of a psychiatric hospital. At least in the former, I was not administered any disabling chemicals.
Now, that said…there is something I did not discuss in the interview, and that is my “recovery”. I do not use the disease model language nor the recovery model language, which is really just the other side of the coin of the disease model language. But I do want to give people hope. I will call this article “Life without Psychiatry”.
Life without psychiatry, including life without the belief in the disease model of distress, is awesome. In 7th grade, I was voted “Weirdest” in my junior high class. The nun, god bless her soul, made the yearbook committee change it to “Most Unique”. I did not really care. I liked both words to describe me. I am weird, wyrd, and unique. I have a need for diversity and to continue learning. I get bored easily, not because I have some personality disorder, but because I am pretty bright and have a curiosity about life. I love people, I love learning about people and helping people be their best selves. I love creating art, goofing around and having divergent thoughts and saying things that make other people think, or scratch their heads. I am more than happy to recant as I firmly believe in asking for forgiveness more than asking for permission. I have experienced forgiveness and given it and it’s great!
My one friend said the other day she cannot imagine me having a coffee habit. I smiled and realized…I AM BACK. That kid who loved life, was the fastest runner, thought too much and overanalyzed things, made funny comments and puzzled teachers. I am back, with a deeper knowledge of the breadth of human experience, pain and joy. With the derealization that occurred in a psychiatric drug haze, I experienced a complete loss of ego. I came out the other side, whole again.
At the worst of the withdrawal, a professional was concerned that I was experiencing early Alzheimers. At 33! She asked me if it ran in my family. That is how bad the cognitive dementia got from the encephalopathy and brain damage. I was forgetting to eat, forgetting to bathe…and when I did bathe I was forgetting to use soap. My hair ended up in nappy disgusting dreads from the profound memory loss. I would start writing a poem in the morning and when the afternoon came, not remember…for months…that I had ever begun it. It is a wonder I was able to survive living alone, or write anything of substance. My friend Jen did come by twice a week to help cook but other than that I was by myself. A group home or nursing home was suggested but I refused, knowing that if I got caught up in that system, I would never get out. I decided I would rather risk death than risk a life of institutionalization. That does not have to be everyone’s decision, but it was mine, and everyone should have the right to make their own decisions. It was the right one, for me.
Along with my mind, my emotions are back now too. Three years after tapering all psychiatric drugs (which I like to think of as the anniversary of when I got sober), I feel completely comfortable experiencing sadness, anger, worry and joy! Going through benzo withdrawal I experienced suicidal thinking, auditory hallucinations and rages and paranoia so severe it is a credit to my training in non-violence, my generally affable spirit and my energy worker that I did not burn something down or begin self injury. If I can go through that, I thought afterwards, I can certainly handle crying for a week straight at the end of a relationship, anger when someone harms me or tears of joy at the birth of a child. In fact, if anything, I am more in control of my emotional world than ever before.
How did I get there? The single biggest factor was accepting my thoughts and emotions as ok, as not a disease. It is only when I began thinking of myself as not sick that I became well. Here were some other things that helped:
- An organic, whole foods, diverse diet. Once the withdrawal was over and my food allergies began to subside, eating a diverse range of foods and correcting some nutritional deficiencies (iron, B12 and vitamin D particularly) was critical to my physical recovery. I am not a believer in radical fad diets because I did give up dairy and sugar during withdrawal and consider it the biggest mistake I made, second only to taking the drugs in the first place. But processed and pesticide ridden foods really need to go.
- I question any cure in concentrated pill format. Having grown up in the Appalachians and being very close to plants and animals, which work in balance and moderation usually, I have come to be very skeptical of any miracle cures. After having a nicotinamide reaction to Taurine (which they still cannot explain), complete with a seizure and a hospital stay, as well as a toxic reaction to a Thiamine injection (and another hospital stay), I realized that unless there is a measured deficiency with a moderate dose to correct that deficiency, going pill and supplement happy is really hard on the stomach and liver and not the answer to most of what ails us.
- Getting back in touch with friends. So many victims of polypharmacy and psychiatry stay angry with the people that abandoned them in their time of need. I was angry, livid at times that my family and good friends left me to die. I have come to terms with the global situation at hand, however, and that is one in which psychiatry is God and profits best when it can tear families and communities apart. We all have been lied to and to hold onto my anger would only further hurt me. That does not mean that some of my relationships did not change, a few unfortunately in grievous ways. It just means that I decided to not be God.
- I don’t take bullshit to heart anymore. I don’t care if I am seen as some angry feminazi or butch dyke lesbian or mental patient psychotic. Because I know now that I am not, any accusations thrown at me when I speak up for myself or others or say something “radical” repels off of me as if I was wearing a waterproof jacket. Which is good imagery, too. Art helps (duh).
- I refused to get caught up in any “answer”, because I dropped the question. I revel in the mystery of humans and myself now. No church or new age movement or philosophy or medical discipline became my God. I really like not worshipping a God. Although I do believe in a bigger power (which I prefer over the term higher power), I do not believe she wants us to worship her, just as I firmly as I believe Jesus would be a little creeped out by most Sunday services.
- I have a really good therapist. Initially she did not buy my no drugs paradigm but now I think she is pretty cool with it. She is a Jungian psychoanalyst but more than anything, she was a surrogate mom. It could have been a therapist, a mentor, a friend’s parent, really anyone could have filled that role. She happened to do so and I am really glad she did, because I needed that hole filled. Counselors are taught those holes can never be filled for trauma survivors, you know just meditate your way out of them, but I experienced that they can. And it’s been years of no longer pining away for a mother figure for me so I’m pretty sure it was a permanent fix. I always knew it was what I needed, and was so angry when therapists told me otherwise. Boundaries. Our world is so full of them and where has it gotten us? Some of them need to be broken. Listening to my gut has been glorious. I was right–human relationships matter.
- I no longer believe I am going to hell for making love to women. Phew. That accounts for maybe 90% of my “recovery”. How anyone can believe such pleasure and love is wrong is beyond me, except that I did. I bought the story hook line and sinker. I was not creating as a lesbian because I could not get pregnant. What a bunch of hog shit. There is so much two people can create together.
- Research. I read everything I could get my hands on…especially medical journal articles, on the pills I was taking. The side effects, interactions, withdrawal effects and the research into how they worked (which is appallingly little). If there was no information on a topic (as there would not be yet with some polypharmacy specifics), I read anecdotal stories. I learned about sodium channels, hyperparathyroidism, portal hypertension, GABA receptors, macrobiotics, hydrochloric acid, refeeding syndrome. I studied the human cell again—the mitochondria and cell wall. I tried to envision what the drugs and the withdrawal were doing to those precious cells. I envisioned them healing, the cell walls becoming stronger. I did what they say never to do: I doctored myself from the Internet. I had no choice; no doctor knew what to do. It worked. That is not an instruction to others as I have been told I am sort of an idiot savant when it comes to medicine, and I believe I am. Through the intense cognitive dementia, I was still able to think through complex biological conundrums even when I could not recall when my last meal was. So I don’t recommend it for everyone. That said, do research. Psychiatry doesn’t tell you much about the drugs they administer. Research will help.
- Aside from the regretful move of taking too many sedatives in the shelter, I did everything in my power to not kill myself. Accused many times of self-harm for losing weight or trying to go off of “medication” that was “such a low dose” I actually practiced a lot of self love regularly. When voices are telling you to stab yourself and you instead choose to pace and get mad at your family, or even sign yourself into a hospital for a temporary reprieve despite what horse shit you think it is, I think that’s pretty good. I think we owe “mental patients” a lot more credit. Most people would not be able to handle the things I went through, but then again I had little choice. That said, although my choices were limited, I had a few. I took responsibility for myself; I refused to become helpless. Even when I was asking for assistance and knew I needed more home care than I was getting (my doctor refused to ask for Visiting Nurses or Meals on Wheels for me even though I needed both), I did not acquiesce to the idea of going gentle into that good night. I fought. I got angry. I walked listless and wasting to the local coop to buy as much food as I could carry and the next day, went again, never knowing if I would pass out on the trip. Anger and fortitude helped to save my life.
- My dog.
- It is so important I will say it again. Despite overwhelming evidence to the contrary, I stopped believing I was mentally ill. At the end of my taper, I decided to see a neuropsychologist to get some cognitive tests, mostly because I knew that the drugs had done tremendous damage and was afraid it may be permanent. I wanted it documented in case I ended up in congregate care. A month before my final dose of Ativan, the report was incredibly grim: I had some kind of undiagnosed mental illness that was so severe I would “never work again”. Despite the fact that they knew I was experiencing benzodiazepine withdrawal syndrome, they made the bleakest predictions for my future. “Maybe”, the PhD wrote, “It would be helpful for her to volunteer a couple of hours a week to make her feel as if her life has some meaning”. On all of the scales: depression, paranoia, anxiety, psychosis…on every one…I was off the charts. I probably could have been diagnosed with schizophrenia, bipolar, psychotic depression and all of the other “serious and persistent mental illnesses” had I ever returned to a psychiatrist. “Her diagnostic history does not match her symptomatology. There seems to be some error in her medical charts.” I took the same tests again 18 months off of all drugs and there was no marked elevation in any category aside from slight depression, which in small doses is critical for any artist. There was an error alright.
- I never, NEVER, NEVER, NEVER, returned to a psychiatrist. And I NEVER, NEVER, NEVER took another mood altering drug. The last three psychiatrists I went to affirmed that I could not take their drugs. The very last one said that she would continue to see me for my SSDI application without prescribing me anything because I was so “chemically sensitive” but I even stopped seeing her once the last Ativan script was done. I didn’t need a psychiatrist anymore because I no longer wanted drugs.
I am sober now. No more self-medicating via a drug dealer or psychiatrist. No more looking for the quick fix. Life sometimes sucks. Life is sometimes unbearably beautiful. I accept it all. I know that I am good. Thank you psychiatry, for healing me in spite of yourself. La vita è bella.