This is posted in the “parents” section of Mad in America. Part 2 coming up.
Coerced unemployment has drastic consequences. Sadly, people do not realize this until they try to find a job after an absence from working. Statistically, one in 200 who were put on long-term disability ever make it off disability. The Ticket-to-Work program and other initiatives have had no positive influence on this grim statistic as more and more sign up for the lucrative disability benefits. The very fact that these payments are called “benefits” makes me shake my head in disbelief!
There are many complex reasons for the permanence of disability. I believe the reason we stay hooked on it has to do with the original reasons for accepting one’s fate as “disabled” in the first place. For me, as a woman composer back in the 1980s I didn’t have much in the way of job possibilities in a field that was at the time overwhelmingly male-dominated. I had no clue what I could possibly do for work as graduation approached. If I recall correctly, my college did not offer readily visible career coaching for music students. I was literally going to be thrown to the wolves, left to figure out the career maze on my own. Some students opted for grad school. One student I knew was going to work for the family business. Several were taking up jobs in fields other than music, knowing that the money wasn’t going to be there if they chose to stay in the creative arts. I was at a total loss. The one thing I didn’t want for myself, the thing I feared the most, was that I would end up waiting on tables.
Calling myself disabled was an easy out for me, an easy excuse for not having to go through with the job search. I could avoid the inevitable sexual harassment on the job that I had experienced in the past. It was so easy to just say, “I can’t do that anyway. I don’t qualify,” and then, I was suddenly off the hook entirely.
Calling myself mentally ill made me feel special, an exception to the rule, because, somehow, I was an artist who didn’t fit in, and that felt okay to me for a long, long time. I avoided reconsidering the fact that this was an illogical and therefore, incorrect conclusion.
I wasn’t “special.” I wasn’t “entitled.” The payments weren’t “benefits” either, nor some kind of scholarship or award that I had won for being odd or unique, even though some therapists would have wanted me to believe this (to keep me coming back!).
Some people realize that their former diagnoses were invalid, and now, they are panicked and grieving over the idea of letting go of sicko mode. We have played the patient role for much of our lives, the one constantly who needs help, the one who needs to turn to “professionals” to stay alive. It’s so tough for some to let go of the habit-forming patient role that they cling to any lingering drug effects as proof of disability. While some of this is certainly valid, we have to stay in perspective. I strongly supported withdrawal communities that help people get off drugs safely, knowing, though, that this needed to be a temporary stop along the way. I knew there was a greater path to follow, leading a world beyond patienthood that was wide open and waiting to be discovered.
I began to read books on antipsychiatry theory and history. This excited me as much as reading about religion and feminism did when I was a young person. I couldn’t get enough of this! I loved reading about how therapy was a bad idea, how locking people up who were suffering did not alleviate that suffering, and how being called a disease-name in itself was disabling. I realized then that what had held me back in patienthood was not a real disease, but stemmed from the way I was treated by society, especially economically. I realized that I had been denied a voice, that I was regarded by many as a societal waste product. I had been denied the right to produce anything useful and was forced to consume resources as much as I could. I was a hated recipient of tax money, resented by others (including mental health workers) because I got freebees from the government, and even worse, I complained when the freebees were taken away. “Why don’t you do this for me?” Wasn’t it time I stopped?
Telling my story again and again stopped being a source of negativity at this point. I realized that it was my job to do this and that I was truly helping others. Focusing on helping the greater good of society changed the way I told that same story.
As I continued to pick up the pieces of my life something else began to happen. People wrote to me from all over the world telling me they’d secretly been following me for years, and were realizing that I was onto something. A few told me they were following in my footsteps, trying out the things I’d tried, and were finding my writing immensely helpful. If this was true, then wasn’t it also true that I had a responsibility to live well? Wasn’t I now obliged to remain as healthy as possible, to sustain well-being, instead of being in patient mode and claiming I couldn’t?
I’m not the only one who owes it to humanity to live well. We all do. Whether we realize it or not, we’re all paving the way for others. We must do this well. At the same time, we cannot demand perfection in ourselves or others. We must realize that life sucks sometimes, that its lousiest moments are opportunities for growth, learning, and true progress, not a disease we should eradicate.
The first time I was ever deeply traumatized was when I was deprived of water in the hospital at age 53. Afterward, I was in so much shock that I felt my life would never be the same. It was next to impossible to get anyone to believe me. Even one of my best friends claimed I was “addicted to water.” The girls at the eating disorders hospital jeered at me, thinking no one could possibly need to drink so much. In fact, most everyone I knew was misjudging me.
I felt only slightly vindicated when I was diagnosed with diabetes insipidus the following year. Still, the anger and grief I felt over the water deprivation did not lift. Why was I not getting an apology? Why did my therapist and psychiatrist continue to call me psychotic when I wasn’t? Why did they continue to back MGH when clearly, MGH had been wrong? Why should water deprivation mean I had to go to a state hospital now? I didn’t have enough hindsight on these recent events to be able to put two and two together. I didn’t realize that their aim was to silence me. These doctors were not working for my own good, but for theirs.
It took me a long time to realize that I was not alone. Others had gone through horrific experiences while inpatient and had suffered from trauma as a result. In fact, many of the patients I knew over the years were in the same situation. They appeared angry and had the same signs of traumatic stress that I had, including anger, rapid or “pressured” speech, and difficulty holding onto relationships.
What had happened? We had found the “help” to be more harmful than any “illness” we supposedly had. The “help” had harmed so deeply that many, I feared, would never fully recover. Even worse, most patients did not even know that the cause was the “help.” Most continued to call themselves mentally ill and continued to medicate away the traumatic reaction rather than facing up to it. It is the hardest thing to admit that your doctor, or a hospital, in whom you placed utmost trust, had been negligent, abusive, or was simply barking up the wrong tree. Those of us who were relatively willing participants (coercion as opposed to a court order) have a harder time admitting this to ourselves since we might feel partially responsible. Many of us were unwitting co-conspirators in the psychiatric genocide.
As soon as I realized that others had been through similar experiences, I knew I was not alone anymore. I felt much, much better knowing this, since my doctors had repeatedly called me crazy. I knew now that I was not crazy, but grieving.
We certainly weren’t all “manic” when the drug was initiated. I was not. I’m fairly certain that Gould Farm, the facility where I was initially put on lithium, was sick of hearing my complaints about how much I disliked it there and wanted to leave. In my case, lithium was initiated as a “we don’t know what else to do, so maybe the placebo effect will stop her from complaining” drug. This was not a decision based on any scientific test, but on guesswork and “last resort” mentality. If so, this was a bad administrative choice because even if lithium were to “work” as a placebo, to silence me simply because it was a pill, it would very quickly destroy my thyroid and kidneys.
I never asked what they had for my diagnosis, but I am fairly sure I was admitted and released from Gould Farm with a “depression” diagnosis. Afterward I was a private patient of Dr. Charles Capers, who clearly did not know what he was doing at all, he very well may have changed my diagnosis several times to suit his fancy. My parents, also, noted his incompetence, not only as a clinical professional, but his billing practices, they later informed me, were so sloppy they couldn’t figure out what on earth he had billed them for. I recall feeling embarrassed having to correct him on several occasions, wondering if he drank like Dr. Finlayson in Vermont. I knew he kept no written records on me at all, even though likely he was legally required to do so. But I didn’t want to say anything. I was afraid to. Maybe he was just getting old. Dr. Capers wasn’t the only clinician I went to over the years who failed to keep records. Just about all of them were sloppy record-keepers.
I also noticed Dr. Capers had this odd twitch that I now suspect might have been Tardive Dyskinsia. It’s not uncommon for psychiatrists to dabble in experimentation with the very same drugs they themselves prescribe. Maybe he had gotten himself dependent on antipsychotic pills! It was very clearly a mouth twitch, but again, I said nothing.
One day, Dr. Capers told me in his office that I had schizophrenia. He said this the same way someone might tell me the weather had turned rainy or the bus was going to be three minutes late. Like I was supposed to take it all in stride. “But you knew that, right?” he said.
I had no clue why he was saying this, as I had no signs or symptoms of schizophrenia, and never had. Should I believe him? I didn’t know. Was he some old wise fool now? Should I just pretend I take this seriously?
I didn’t want to rile him up, so I nodded and left the appointment as usual, thinking about what he had said. Could it be true? Even remotely true? I felt obliged to humor him because I didn’t know what else to do.
A guy keeps writing to me saying my devices are all infected and that he has access to my email and all my contacts.
Later in this email he says that while spying, he saw me watching porn (implied) and also filmed my reaction.
There’s a problem here. I don’t watch porn or anything fitting the description he gave.
He goes on to demand $1,000 in Bitcoin and says if I do not, he’ll share me watching porn to everyone.
Hey, good luck to this guy. I doubt he will ever find any porn I watched. That is about the same as those folks calling you up telling you your car warranty is up, when you do not have a car. Or telling you they’re calling from Microsoft about your infected Windows computer when in fact, you use a Mac.
People who have been through psychosis often have trouble being believed. Once it is established, people can use your past record as a reason not to take you seriously. This can make it easy for people with not-so-good intentions to take advantage of you. They may steal from you and then if they’re ever caught they can say you only imagined it happened. They can take advantage of you sexually as well, and then, claim you’re delusional.
This causes equal problems for those who are only accused of psychosis. It won’t even matter. You don’t matter anymore. They can do anything they want and they know it won’t even make it to a courtroom. Doctors and others who work in the mental health field, especially, can take advantage of their diagnosing power and accuse anyone they want of psychosis as a way of discrediting them. This is especially true when they’ve harmed a patient. The first thing they’ll want to do is to put you away, and if that doesn’t work, drug you or threaten you, or refuse to give you any medical treatment at all. If all else fails, they will discredit the person, telling others in their circle not to listen and not to care. It is a tough situation indeed.
I have never experienced psychosis unless you see psychosis on a continuum.
I don’t know how easily we can distinguish a person’s story as a psychotic notion. For instance, in the case of Hemingway, the CIA really was following him. His friends thought it was a delusion and had him committed.
I have seen reality confused with psychosis in hospitals. In particular, these “staff” are unaware of cultural differences and very well may misinterpret the person and assume they’re psychotic. An example might be a new mother who says certain government officials are pursuing her. This very well may be true. She may be referring to CFS, an arm of the government that targets immigrants, poor people, minority groups, and single mothers.
They are very quick to assume you’re psychotic without even checking out what you are saying. When I was in Mount Auburn Hospital being abused, I told the student doctor that I “heard bells.” For many days she dismissed what I was saying. By the time I figured out these were the patient call bells, she already believed I was psychotic and anything I said she assumed was a delusion or hallucination. I told every staff person I could grab that I was being abused. It was too late. They refused to take me seriously.
I have seen battered wives called psychotic just to make sure they are totally discredited. These women ended up on the wards again and again and any report of her husband battering her went unheard.
What about people who really do experience psychosis? I don’t see any point in arguing with them or trying to dismiss what they are saying as delusional. I think a person should be listened to and allowed to speak about what they are experiencing without judgement.
Sometimes when I tell my story to people they simply do not believe me and assume it’s psychosis. This is especially true when I talk about the actions of the Watertown police. Yes, they did come to my home January 10, 2014 and accuse me of a crime I had no intention of committing. Yes, they did raid my apartment while I was in the hospital in 2013. I knew this had happened because when I came home, the closets were emptied as were the drawers. I had not left it messy like that! They were looking for pill bottles. The pill bottles they found were two and three years old respectively, prescriptions I did not take anymore. When they found these, they failed to see the dates on the bottles. This is why I was handed 600 mgs of Lamictal in a single dose and 100 mgs of Synthoid (old dose). My prescription for Lamictal was 600 a day, with the understanding that I would spread this out, at the time. Still, 600 a day of Lamictal is extremely dangerous. While I was in the hospital I had no clue why they handed me the wrong dose of Synthroid and 600 of Lamictal. Luckily, I spat out the Lamictal as I had not taken it for over a year. It was only after I came home and saw those two empty old pill bottles sitting out there on a table that I realized what had happened: The cops came in, tore the place apart, found the outdated pill bottles, then, called the hospital and said, “We found out what she takes.”
I should have taken pictures, but when you are extremely happy to be free at last and you aren’t expecting your place to be illegally torn apart, you don’t exactly think of using a camera.
To this day, many still think all this was a delusion. If you think that, then there’s nothing I can do to change your mind. However, if you do, I don’t want to associate with you or speak to you. It is not healthy for me to be around people who are so ignorant and naive that they think that none of this could possibly happen.
If it didn’t, then why did they hand me 600 mgs Lamictal out of the blue while I was in the hospital? This wasn’t out of their records, and not in my up-to-date pharmacy records. They found the old bottles and that’s how they knew. They were wrong, but they indeed found out due to the bottle being in my home.
In my records they never admit to this. Instead, they wrote, “We found out that she takes 100 of Synthoid and 600 of Lamictal.” They don’t admit the cops (or someone) raided my place to discover these things. Of course not! It wasn’t legal.
Many people with whom I have spoken have told me their troubles. I spoke with a man who says he works many hours but has to because he must support himself and his family. A woman tells me she is deeply bored. A girl tells me she feels excluded due to a physical deformity. A woman is happy to hear that I, too, am not married. A man tells me he’s going through a “career change” and doesn’t know where to turn next.
It is different in other countries where psych is not so prevalent, where, in fact, they can’t afford psych and its drugs. None have told me they suffer so much they feel they cannot go on. I think that’s because these problems of living aren’t seen as diseases in other places. These issues clear up quickly since there aren’t any shrinks around. This has actually been proven…but I am not an authority on statistics.