You Were Absent That Day

We have dealt with many doctors and therapists since my son got sick and the majority, well... all but the last one, have been either overworked or idiots. Sometimes both.

The first psychiatrist our son was assigned to, did not see him until many weeks after he was released from the hospital, and then saw him once a month for approximately 15 minutes each visit, at which time she would write his prescriptions for the coming month. This was very different from what we imagined his treatment would be, especially because he was still extremely psychotic. We were completely freaked out at the condition he was in and couldn't believe that we were supposed to take care of him at home.

After years of experience at this, we now know that he should never have been out of the hospital in that condition. The medication he was prescribed did not giving him sanity. But, we were new at this. The doctor that saw him during his first hospital stay told us he was bipolar. I had studied enough psychology to know that the diagnosis sounded incorrect, but, he was the one with the medical degree. So, he was put on a mood stabilizer and an anti-psychotic. Mental hospitals have a habit of releasing patients as soon as they possibly can, particularly if they are on Medicare or Medicaid. So if they can find a clueless relative to take over, all the better for them, regardless of the sanity level achieved.

The psychiatrist he saw, after he left the hospital, said he seemed more schizoaffective than bipolar, to her, and changed his medication. He became a bit more lucid, but nowhere near normal. The doctor set him up with once-a-week sessions with a therapist in the office. The sessions did not provide any road map for living-while-insane to my son and it frustrated him having to spend time with this stranger that he did not want to talk to. My husband and I were stressed beyond belief, as was our son. When we met with the doctor to discuss our frustrations with the lack of real treatment for our son, the doctor told us that she had a huge case load, as one of the very few doctors in the state who would accept the (short lived) State's insurance program (which our son was put on because we did not have any health insurance at the time) and so we were introduced to the "tag the loony, collect a check" branch of American psychiatry.


All along this journey, with frequent changes of doctors, diagnosis, counselors, clinics, hospitals, and medication, we were led to believe that they were doing all they could for him. Some months were better than others, but he was continually delusional, sometimes severely, but we thought that was as good as it was going to get, and at least he could speak sentences instead of the word salad he used in his deepest psychosis, and seemed to know where he was and who we were, and only sometimes thought we were evil impostors. His diagnosis quickly changed to schizophrenia, because he had a persistent psychotic state, which became severe when he would go off his medication.

He became thin, his hair grew long and unkempt, his clothes were rarely changed. He and his clothes were perpetually in need of a good scrubbing. He became fearful about his safety and would hear noises that frightened him especially at night, making him afraid that he would be harmed somehow if he dropped his guard and slept. Sometimes he would become argumentative when someone tried to reason with him, but usually he was very meek and quiet, preferring to be alone in his room writing, writing, writing, filling little notebooks with????, or riding his bicycle around town taking pictures with his camera, or working on his digital art on his computer. For a long while, he would not wear a shirt or shoes and would write on his stomach and arms in ball-point pen.

He started smoking cigarettes during his first stay in a mental hospital. The staff would announce that it was time to go outside to smoke, and he would line up with everyone. It was a chance to go outside into the courtyard and he didn't know he didn't smoke. He's a chain smoker now.

That first hospital, the State Hospital, let us visit him every day. It is fairly new and cleverly designed. Visitors come in through the front entrance, patients are admitted at a different wing of the hospital that has holding rooms that can be locked, but have large windows so they can be seen and there is no feeling of claustrophobia. There may be a "padded room" somewhere, but we didn't see it. It was very late at night by the time we arrived there from the emergency room where we had spent most of the day. Our son was brought from the emergency room by the police as is required with involuntary committals. We didn't know then, that this committal was officially involuntary, we were so tired and frightened by our son's mental and physical state that we didn't care how it was classified; anything, just so he would get help.

We were allowed to be with him while the doctor that was in admitting tried to interview him. He had been speaking in "word salad", phrases and groups of words that didn't seem to have any connection to each other and made little, if any, sense to us. In the emergency room he had mentioned a mole several times, and I was really puzzled by the importance he seemed to be placing on a fuzzy little tunnel digger. Sprinkled in were things I recognized like literary references, movie references, mathematics, physics, messages to him that were written on the walls in the jail, Buddha, Jesus, Seven Years in Tibet... I was amazed that the doctor was able to connect with him. She picked up on obscure physic and graphic novel references, and a bizarre and fascinating conversation ensued. It turns out that "mole" is a word with many meanings, and he was talking about the molecular weight of a substance expressed in grams, and the doctor discerned that this was the meaning he meant. They jumped from subject to subject in a rapid fire verbal shorthand that was understood by only the two of them. The doctor, a woman of Indian descent, said she had teenagers, so she was familiar with the obscure comic book references he included in his tangled speech. She told us that it was particularly sad when it was one of the smart ones. We told her that he had not eaten all day and she had a sandwich and drink brought in for him. He tried to fit the whole sandwich into his mouth and I said something typical like, "You'll choke on it if you do that" and he looked at me like he didn't understand. She was ready to admit him and gave us the sheets of paper that had the visiting hours, hospital map, rules, phone number to call for information and to locate his room, and we went home.

I was impressed with the design of the hospital. Once you got your visitor's badge from the guard inside the front door, at the waiting room, the plan looked a bit like a lizard that had swallowed a few rocks. It was vaguely mall-like. One of the "rocks" was a court room where a judge met, once a week, with patients who were involuntarily committed, and other legal business was conducted there without having to transport anyone off the grounds. Another of the rocks appeared to be a dining/meeting room. I never saw anyone eating meals there, but once I did see a few people there participating in a sparsely attended Karaoke night. The wide corridor split around these rooms and met again on the other side. There were offices, a library, a beauty/barber shop, snack shop, vending machines, etc.. Almost all of these rooms had windows that looked out onto the corridor and open doors, adding to the mall affect. Along the hall, at intervals off to each side, would be the locked doors to the pods where the patients stayed.

Visiting hours were in the evening and the hall was empty except for other people going to visit someone, and a few patients who were allowed to spend time out in the corridor. They were usually sitting on the benches that were placed against the walls. One of the women asked me for money. I had trouble understanding what she said, but her outstretched hand, palm up, cleared up my confusion. I gave her some quarters and she smiled and gave me a hug. It became a routine we were both pleased with. She would start to smile when she saw me coming down the hall. I always had a little money for her and she had a hug for me. The last time I saw her, she was curled up on the bench, sleeping. I folded up a dollar and slipped it into her hand. She didn't really wake up, but she whispered, "money", and returned to sleep. I supposed that she had spent a long time living on the street in her life.

Once an old fellow standing outside the hospital entrance asked me if I could hear the voices coming out of the speaker. He indicated a surveillance camera above the front door. I told him that I couldn't, but I thought my son might be able to now. I was beginning to lose my fear of crazy people, at least in this controlled environment. If my son was going to be one now, then there was the possibility that these were also wonderful people who were trying their best to make sense out of the faulty information their brains were sending them.

The door to the pod my son was in stayed locked and you had to be let in by one of the employees inside. Most of these employees had no special training, but were there to watch the patients and keep peace. There was a living room, a dining room, a meeting room, a completely walled outdoor courtyard, a nurses station, a few offices for social workers, nurses and miscellaneous staff. There were two hallways with patient rooms, two to a room. We were supposed to stay in the small dining room for our visits.

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I would ask him to take a shower and to put on the clean clothes we had brought for him when I would visit, because he was quite dirty and had not been clean before he was admitted to the hospital.
See: The Weekend's Entertainment (schizophrenia in jail)
He would ignore me at first, then one day, after a week or so, when I got there for my daily visit, he noticed me in the hall and turned around and left in another direction. After about twenty minutes I asked one of the staff where he was and I was told that he was in the shower. He may not have known who I was, but he remembered that I was the person who always asked him to take a shower. A little while later I spotted him, as rumpled and dirty as he was before. I told him that someone told me that he was in the shower and I asked him what had happened. He said, "There are no holes in the shower head. They are fucking with me." I suggested that sometime he might take a leap of faith and try turning the faucet handle to see what would happen. He reiterated that there were no holes in the shower head, to make it clear that a shower was impossible.

He had lost so much weight that his pants would not stay up. They take belts and shoe strings away from the patients. I was told that he would dance to the music and forget about holding up his pants, and that he would be oblivious to the fact that he was naked below the waist. The staff thought it was really funny, but it made me angry at them. This was a young person who had always been modest before his illness, and it just seemed wrong that they would not help him preserve his dignity by finding a way to make his pants stay up or help him into the smaller clothes that we had brought for him. They managed to "lose" them. Their explanation for the disappearance was that he might have given them away. That made me angry with the staff, because he was so guileless and vulnerable, that the concept of ownership meant little to him in the condition he was in. They let him wear some pants from the lost and found bin, and a few days later his clean clothes reappeared. The day he finally took a shower, his father dressed him in them.

He hasn't been back there, partly because it is far away from where we live and most doctors use other hospitals. Sometimes there is no bed available at the hospital used by the doctor he is seeing, so he is taken to a different hospital. That is one of the ways he ends up with a new doctor. All of the hospitals he has been in usually only keep him for two or three weeks, change his medicine, and only let us visit him once or twice a week. One way we can tell that the medication is beginning to work is when he starts saying that he wants to leave. Before that, he is a bit too messed up to care.

to be continued..