The Icarus Project and Mad Pride

This is how Newsweek begins its article about the Icarus Project and Mad Pride:

We don’t want to be normal,” Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn’t take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still. http://www.newsweek.com/id/195694

Readers will note two things immediately: It is not common for someone diagnosed with schizophrenia these days to be “delicate and thin” — despite articles claiming to prove a supposed link between schizophrenia the illness and obesity, most of us would say that weight gain went right along with taking meds from the get go. And that most of us were originally either of normal weight or even thin compared to “normals.” the other striking thing, I think, is Will Hall’s level of energy. Most of those with schizophrenia, at least those on meds that I know, have a much lower level than normal of energy and motivation, which again is attributed to the illness itself. Now of course negative symptoms might be an effect of the illness, yes. But I also know that at least when I took the older drugs, like thorazine and mellaril, they added tremendously to any inner listlessness I might have felt. Indeed, what else is the infamous Thorazine shuffle but a drug side effect that practically screams medication-induced psychomotor retardation?

In any event, it may be that some of my readers with schizophrenia, and many of the mothers (and in my experience when caregivers visit this site it is often mothers who do though sometimes fathers do as well) of those with schizophrenia, may well disapprove of my posting this link. But I feel it deserves a viewing. Too many of us suffer the effects of medication without benefiting from its advantages not to offer another form of hope. As long as someone is not a danger to him or herself or others, why should they not be offered the experience of Mad Pride, should they prefer it? In these later stages of my own “condition” I too long to be off meds and to experience my experience, to do art unencumbered by the effect of meds that fatigue me if nothing else. But if I feel enabled now, and emboldened by some inner force to do art, I just might be liberated to unknown heights once off the meds, and if I can control the dangers I used to put myself in vis a vis cigarettes and such, why should i not be permitted such an experiment. Alas, no one here would ever allow it. I would have to endure such remonstrations and scolding and worse from relatives and others it is simply not worth it, or else I simply could not bear the bitterness of fighting with them…SO I am stuck, stuck on these deadening and dangerous medications until such a time as I feel free enough to move away, leave town and move elsewhere. Until such a time as universal health care enables me the freedom to leave the benefits Connecticut so generously provides me as a Medicaid/Medicare patient, and live elsewhere, I am simply forced to live in my same old tiny apartment and change nothing.

But some of you might be wanting to make that change and be more capable of it, be more able to maintain 1) stability and 2) a family support network, rather than a state of constant resentful watchfulness and remonstrations of such bitterness that make it not worth the effort. I know my friends would definitely support me, but I need my family to as well, or feel I do…I am not yet ready to say I can do without it at any rate…And so I remain in thrall to their demands on me, despite the fact that for many years I had no ties to them at all, and neither help nor obligations bound us. If it is good now between us, and I love that part of it, it also means that I feel that I must live up to expectations I could disregard before…and that is so hard, and often such a burden.

Nevertheless, I love them, insofar as I am capable of the emotion of love (see posts below for an explanation of that caveat). And if I am not, then I feel for them as mu9ch as I am capable of feeling for anyone…which is all they can ask.

But I have diverged from my initial subject matter which was Mad Pride. Tomorrow I give a talk and a poetry reading at the House where I live of 250 residents, though only a handful are expected to attend.  IN the talk I finish by answering the question, do I link mental illness and creativity, and my answer is, Maybe, but even so, in most cases the best work, mine at any rate, is done “best when I am better.” I mean by this that deep in psychosis I cannot write anything decent, if I write at all nor do any decent art, because I am no longer motivated nor able to concentrate well enough to do so. Perhaps in a manic state I have been able to, but those have sadly (yes!) been too few. Otherwise my more extreme moods  have been called a mixed state or major depression. In any of those moods, and certainly when extremely or even moderately paranoid, I do little work at all. And when hearing “bad voices” ditto, since that is when I am most likely to be concentrating on acts of self-harm and least on self-nurturing activities such as art. So you see why I say what I do, that only when I am at least getting better do I do my best work?

Moreover, I believe this is true of most people. It seems to me that even in the case of the Mad Pride artwork at the Newsweek site, those artists were not in fact psychotic at the time they did their art, Oh, perhaps they were depressed, but clearly not catatonicly depressed, by definition. And I cannot believe that they were disorganized even if their diagnosis was schizophrenia, because however weird the artwork, there was recognizable order and ordering in each and every one…

Welp, I am getting fatigued just writing this, so I will leave you with that short disquisition and the link to The Icarus Project. I am not endorsing or not- endorsing it, only expressing my interest and indicating my plan to continue to read up and find out more. Somewhat not surprisingly, there is an active ? branch in Northampton,  MA, which is the town I have wanted to move to for a number of years, but have not yet had the nerve. Nor has there been the financial or medical feasibility. Now there might be, but it is still not possible. Oh, I wish I could move, but there is Joe to consider, and I would not leave him now.

That said, here is the Icarus Project Link. Enjoy? Comments will all be read and appreciated. I will respond if I can.

http://theicarusproject.net/

2 thoughts on “The Icarus Project and Mad Pride”

  1. Thanks for noticing us 🙂 Just a note that TIP is /not/ anti-psychiatry or anti-medication — what we are for is empowerment, harm reduction, and giving support to individuals so that the feel like they are able to make the decisions that enable them to feel well and healthy — whatever well and healthy means on their own terms. Many of us find psych medications useful (some a godsend and some a necessary evil), others of us have had horrible experiences with the health industry in this country that often seems to focus more on doling out pills and getting people in and out the door rather than focusing on holistic and individually crafted solutions. Lastly, we recognize that many behaviors and emotions/thoughts often labeled as “healthy” or “normal” in our society are actually quite pathological.

    Thanks for checking us out!

  2. Hi Pam,

    All I know is that I am happier and more creative since I began taking the anti-psychotic medications. It took a few years to get to this point, but I’ve arrived. I am still obese, but no where near as depressed or psychotic as I used to be. My body appears to have adjusted to the medicines and I would be nervous about not taking them. But I have been fortunate and I know there are those who have been disturbed by various side effects. I think, despite lingering symptoms and some side effects, that you are fortunate in that you are so amazingly creative and in that you do not appear to suffer from much depression. I just want you to be as well as you can be. I guess I don’t have Mad Pride. What I do have is a kind of pride in having survived the worst of my psychosis (which at points were a living hell). My more major concern is that there be health care reform in this country, so that those of us who do want to take the anti-psychotic medications can afford to do so. The fact that there are those who could benefit from the medications, but who cannot afford them is a real tragedy. But for those who decide to stop taking the medications (and many Pam, as you know, do fall back into deep psychosis, though not all) I can’t believe that they can do it without some kind of very strong support system in place i.e. therapy, support groups, creative outlets of all kinds, assisted living, the support of family and friends, etc… Meanwhile, here’s hoping that a cure can be found for serious mental illness, or at least effective non harming treatment.

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