I was surprised last week once again when I tried to get my son into a new Doctor who might be able to help him with the side effects his medications were causing. My attempts to support/fix/change/transform myself, my own attitudes on this subject, and most important, the debilitating state of existence I saw my son descending into all contributed to my newest effort to do my part, to do something about an unsatisfactory response from the Mental Health community. My reactions feel powerless and ineffective. I am faced with either moving the sluggish leviathan of common interest and thought about mentally ill people or acceptance of the status quo. My latest attempt involves research of the laws that “protect” the mentally ill from predators who seem to be invisible and uncommon compared with what a person with a personality disorder can do to themselves (as is their so called right according to the law). It is amazing to me that short of suicide or suicidal attempts, a mentally ill person is allowed to kill himself or herself slowly–with meds that don’t work, with food, with isolationism, with a host of rejections from people who are bound by rules that apply to the mentally ill person, but do not necessarily help them to survive in the world.
Don’t get me wrong though. The alternatives- incarceration, institutional abuse, secrecy, loss of freedom, ignorance about this form of illness and the societal prejudice of being considered social pariahs (the list is longer), etc.–all of these are to some degree becoming more enlightened. However, we are still a long way from viable solutions. In the meantime, a large percentage of people with a mental illness are still suffering. My son’s symptoms that caused me to wonder if his anti-psychotic drugs really did make a difference and were working came from the following observations: he seemed to have developed Tourette’s syndrome, but an odd form of it–he shouts out occasionally but speaks in an un-intelligable language. Sometimes it is just noises, sometimes it is weird disconnected or fragmented sentences. He says his head and his sternum hurt and he is less able to focus than he has ever been. To have a conversation with him is an exercise in patience and your ability to interpret un-related ideas. He speaks more slowly sometimes in what looks like an attempt to respond to any question I might ask him. But he still answers my questions with answers on total other subjects. However, his actions or responses to my requests seem like he understood my question, could and does act on it, but cannot not tell me that (response) in language (english language). There are more quirks than this. I made a list for his old Doctor, but she did not think it necessary to change his medications. All of his behaviors are new and have been showing up in the last six months. He has been on this particular drug for over a year and at first it worked well but now- not so much.
So the the laws don’t cover what can happen to someone insidiously. He seems to be deteriorating mentally; his cognitive process or thinking seems to have lessened. He still lives in his own place and maintains some independence and likes living by himself. Watching his deterioration without being able to do anything about it according to the law has been difficult. I could apply to become his legal guardian. But I am concerned that requesting guardianship over him will cause his already low self-esteem to be affected. The reading/research I have done about what it looks like when medications stop working list his symptoms as the most common ones that occur. Why doesn’t a board certified psychiatrist notice that? I wonder? Are the laws binding her as well? If she says to Sean, “would you like to change your meds” or “Are you having trouble with your meds?” and he responds, “Phish is my favorite band, but they keep me awake at night” (usually his response is not that coherent, but that is an idea of how far off he is from hearing what you say); houldn’t we be concerned and help point him in the right direction, though? Or insist he do something about his meds? I have been in a dilemma about this for about 2 months. My solution, get another Doctor to at least observe him, or talk with him. The problem with that solution: her clinic requires he make his own appointment with them which so far has taken over a month and we still don’t have an apt. Is he is able to have a conversation with anyone in his state of mind, make his own apts., write them down, etc.? So far no matter how many times I tell him, don’t forget the clinic is going to call you on Wednesday, he hasn’t made contact with them yet. They told me it might be last Wednesday or next Wednesday, they were not sure which Wednesday they would be calling Sean to make his apt. -for Thursday (thursday being the only day he would be able to see the new Doctor), but they said as soon as they could get him (talk to him on the phone) on an unknown Wednesday, Sean would get an apt. with the new Doctor. Does that sound convoluted to a so-called normal thinking sane person? Imagine someone like Sean figuring it out.
Self-Portrait by Sean