I wrote some or most of this in 2009 but I want to rewrite and update it..
Art, capital A, saved my life. It did more than that. Art gave me a new life, new hope, and something to get up for in the morning. It’s not that I’ve stopped writing. But I had been writing in a vacuum for a long time and needed an outlet for my creative urges that involved more than just my brain. Oh sure, writing involves the hands, too. But not in the way I mean. What I needed was, well, what do I mean? In some sense I needed more activity, if only because my poor brain shuts down and goes to sleep whenever I read, and it simply capitulates to narcolepsy whenever I am sedentary. I have indeed tried standing up while reading and writing, but this doesn’t work for someone whose feet swell very easily. And I find that standing up is just more distracting than anything.
But also I felt an intense to make things, create objects or works of art that could be seen and touched and even smelled and if scratched or thrown to the ground, heard. I had no idea in 2009 that in 2014 I might even write a couple of rap songs before I succumbed to the impulse to retreat into self-imposed total mutism. If I were VIncent Van Gogh, I might even want to taste my art, but I will try to stick to real culinary arts when that urge overtakes me as I do not at the present time wish to be poisoned by cadmium red etc. Nevertheless, despite my lifelong love for words, I still wanted to create something physical, not just an imagined or recalled world in words, however long-lasting.
I have always needed to work with my hands. I once wrote a poem called Hand Hunger which some silly psychoanalytic candidate insisted was sexual rather than seeing the references for what they clearly were, to making and creating and building with the hands, to MANUAL LABOR and not to — (sheesh!) masturbation! I mean, how stupid and dim can you get?
Anyhow, I needed to make something or do some sort of craft or artwork. Fearing/Knowing that I could not do “real art,” (YASS,that was ME only a few years ago, telling myself that I could never paint a face! Listen up all ye who think YOU can not do art!) that I was not the stuff of which true artists are made, I always gravitated towards the crafty side of things. (But pray tell, what stuff is that, Pamela?)
So even when I – on a manic whim – dove into sculpture, creating that llama-in-a-day, Dolly the Llama,
the result was mostly folk art, which is to say, unsophisticated, rustic, and at best a craft-like work. Sure, I was pretty proud that I’d made a lifesize animal that actually stood up firmly on its own four legs. But with a deli-container-head (underneath the papier mache) and huge mailing tube body, scarcely concealed, big enough to have once held a large amateur telescope, it didn’t look much like a llama. In fact, the result was not much more than that tube covered with a few layers of paper and glue, and all of it painted red. Nevertheless, I was happy enough with “Dolly the llama.” I have to confess though that it took me a entire year after the psychosis and mania were treated to finish her. Her saddle blanket have fooled many into tugging at the finge to see if it is real or not. a trompe-l’oeil — eye fooling — success that pleased me no end.
But a year-in-the-making was too much time to complete a craft or artwork, even a life-size llama. I came to dread the work by the time I got to applying the last few strokes of paint. You really need more drive than that to do art, but I didn’t seem to be able to sustain the energy or enthusiasm for much of anything. in fact, I’m not at all sure how I managed to write even my part of the book DIVIDED MINDS given those obstacles.
Then, during my hospitalization in 2007 it seems one obstacle was overcome: on Abilify plus the Abilify-tempering Geodon I suddenly had both energy and stamina* (see bottom of post for a later 2014 discussion of this). Or perhaps it is simply that the medications enabled a “well me” to come out, someone who could sustain an artistic effort, even if it was for the very first time. Given a different life I would have been doing this sort of thing all along had I known it was possible, had I had that kind of stamina… But I didn’t think about this, no, for me there was no looking back.
What I did not know at the time I wrote those words back in 2009, or at least the connection I was unable to make, was that I had actually been on that same antipsychotic drug combination for a several years before this sudden transformation. But in late 2007, however, a small vascular malformation in my frontal lobe hemorrhaged. This was a small bleed, to be sure, but I later felt and some doctors have also agreed this was not impossible, that the timing was such that the bleed itself might in some sense have been responsible for the sudden production of Decorated Betsy
and as my new-found compulsion to do art as well as the felt inability to stop…
Since that time I have jokingly said, “Well, a little brain damage (in the right place) never hurt anyone.” Of course, that is indeed only a joke. because brain damage almost always DOES hurt people. But in this case it seems to have wrought a miracle in my life.
Over the years since Dec 2007, I have created many pieces, large and small, from bowls to two large tortoises and two geese, even a “crazy fruit” bowl. Also a large seated man, a child detachable from her hassock (not quite finished) and several small birds. My female sculpture, the Decorated Betsy, even won a NAMI national contest on creativity and mental illness. But why tell you about them. I will upload a few photos instead.
I am going to try to show you them chronologically, but without the many bowls I have made along with way, except for a few that are particularly special to me. Note that all the sculptures incuding a few that are not shown here, have been donated to someone or some organization, However if anyone is interested in purchasing a new sculpture, I do accept commissions.
This is the Dream Tortoise, otherwise known as Yurtle the Turtle, which is about 3 feet in diameter. It was my second animal, but my first turtle.
The prescription that this brightly clad psychiatrist holds in his hand reads: Dr John Jumoke, Rx: Art, Poetry, Music. I thought, well, that is one shrink even I wouldn’t mind seeing!
*As for Abiilify and Geodon “causing” my stamina and better endurance? I dunno what to say? I have little social stamina even now. But I stopped the Geodon almost as soon as I restarted it. I just feared taking any drug that prolongs the QT interval, one, and isn[t even approved in Europe for heaven’s sake! Why is that? I can think of two reasons. One is that it is NOT effective at all, not even enough for them to fake-believe it, or two, it is too dangerous for the Europeans even to subject their mentally ill to it. There may be other reasons why the European Union declined to approve Ziprasidone, but I cannot think of any other obvious reasons.
As for the Abilify, well, I have taken it, more or less, since I was in Care Bed, largely because they got me onto it and I am scared, frankly to stop it…And yet, I do have to “get myself” to take it each and every day, stop myself from simply removing it from the slot in the pill tray that it is in…I should. slowly, but I am afraid, I confess. My therapist at the Northeast Kingdom Human Services told me yesterday that I came extremely close to having been forced into the hospital this month…and she is worried about me if I do not take the fricking drug. But I do not believe it does a danged thing for me, nothing bad either, nothing bad that tis obvious at any rate…But what will it do down the road, and what was that stuff going on with my mouth when I was OFF it??? I want to know but I know no one will tell me or even test me for TD, because they do not want to KNOW…They do not want toi know if the drug is causing brain damage because of the consequences of their KNOWLEDGE both from me and for them.
FUCK THEM and FUCK ME. I don’t know what to do. Everyone has an opinion and everyone has a different opinion and because I do NOT TRUST MYSELF to know myself or my needs, I listen to everyone at least temporarily. I listen to everyone! But I cannot trust what anyone, any one single person tells me, because I do not actually trust any single person to know a goddam thing about it OR to tell me the fucking truth. That is the problem. Even Nancy, the APRN, who admitted that the drugs were imperfect and very broad targeting, etc seemed to be too enthusiastic for them, rather than trying to find a way NOT to use them. But that may have been because I myself raised a stink about their having taken a WHOLE bottle of expensive pills (GEODON) from my bags at CARE BED and not returned them to me,…I did not like that one bit.
i mean, I am not going to overdose or sell the meds, but I want what I came in with, and they are MY pills, goddam it! Wh=at right does ANY one have to take them from me! So i partly agreed to the Geodon just to get my bottle of pills back, only then it turned out that they wanted to give me a weekly tray so I would try to be compliant …so I did not get the entire bottle only a week’s worth which I frankly am not even taking.
I do not want to take any pills except for what I FEEL in my soul I need! I NEED 1) methylphenidate, or I cannot stay awake to do anything, esp not to drive any farther than 10 minutes away, if even that. I start yawning about 15 minutes after I wake up…You may think this is a bad drug for someone with a propensity for psychosis but having narcolelpsy is NOT my fault…I cannot stay awake for the life of me. And that was true well before I ever took any other drug. 2) I need topiramate because I really fear seizures, and because if it just reduces my headaches by one a week, it is worth it. I take severall vitamins in larger than usual but not mega-doses. I take a very small dose of a thyroid medication also, which I would not want to stop…Do I NEED Abilify or Geodon? Some people who have known me for years and in and out of hospitals say “Yes, absolutely!” some others say, No, not if you reduce the dose very very slowly..”
I do not have ANY inkling myself, none at all, but I want to believe NOT…I do not feel that these drugs do a thing at all frankly. Except bad things, especially in the case of Geodon. I do not usually like it when people tell me what to do, but I wish wish wish in this case that SOMEONE with influence would indeed tell me what to do. Precisely..and convince me. But no one is in that position, not any more. I am just alone and fucked…My therapist practically said, no she DID say: f you end up in the hospital it will be no one’s fault but your own, because you won[ take the Abilify….What sort of thing is that to tell me??? Should I just accept that and be quiet or what? Is she right? I didn’t like it one bit. I felt utterly abandoned and scolded and also basically told, well, you heard! It WILL BE YOUR FAULT! YOU TAKE THOSE PILLS OR WE BLAME YOU!!!!
Enough of this shit…I should, I suppose, have written something about my gratitude for this lovely holiday, the original one that presaged a wholesale slaughter of our good “Indian” buds we had over for the first T-day…ha ha ha. And how grateful I am for this wonderful country that treats everyone “equally” and with compassion and kindness (justice? Oh well, we need not mention JUSTICE, need we?Justice goes without saying, don’t it???) Ha ha ha, of course if you are melanin-challenged you might not agree that justice nor social compassion…But some folks in MO, and a certain MO town these past few days and nights have come to a different understanding about such things.
Okay enough for the “holy-day” chatter from me for now.
Gotta go pace the driveway.
Although I usually draw with my right hand, this portrait sketch of the young Theodore Roosevelt was drawn with my left, and is much freer and (I would hope) truer to life than the right-handed portrait I had drawn earlier. I started with ballpoint pen, then “corrected” with green, brown and blue pencils in sequence. Eyes, TR’s right eye especially, still aren’t right, but I couldn’t do any more corrections on this particular sketch. Better luck or one would hope more skill maybe, next time…
I dunno that more need be said about this picture except that Tim is a dear friend and I owed him this turtle for two years before it was actually finished…
When I saw at the end of this film, part four, before the depressing note that stated all that Indian law might not permit Reshma to do in her life, how she was making a living by painting, all I could think was, WOW! Go for it! At the very least, she is not being held back by the strictures of disability law and Medicare and Medicaid earning limits, or being forced into a permanent sick role because of same, simply in order to have a roof over her head and food to eat. No, she was lucky enough to have a family that both really and truly took care of her in her worst moments and fought for her in the best sense of the word, and also one that let her go when she needed to fly free. Most of us are not so lucky…alas. I think the support that she got all through her illness played an enormous role in her recovery, frankly. And I dunno how many of us get that sort of community or family support, but I wager that it is not many. I certainly did not. I wish I had, but it was very much to the contrary. Instead of support, I was abandoned entirely, both financially and emotionally. Left high and dry, to such an extent that people who met my parents after the break, never knew I existed, not for thirty-five to forty years. Some are only just learning of my existence now, as they meet me when I visit my mother. They didn’t even know or understand that all along Lynnie had a twin!
But I do not wish to dwell on that, except to say that things did not have to be as they were. And we do not have to live as second class rejects in society, except insofar as we accept that role. And take it on, along with the disability status and payments that we are told we should apply for at the first psychotic break. I disagree. If a person has a work history (and history is the single best predictor of the future, if anything can predict it) and has shown that he or she can hold a job, then why after a psychotic break should they be told they will never work again and that they should apply for social security disability? Disability signifies Permanent and total disability, that’s what it is for. You are not supposed to get better, and it’s meant to be “for good.” No, it is not impossible to get off SSDI and you can in fact earn your way off it. But how many people do? Not a single person I know who ever obtained SSDI payments ever got off it or ever even tried to do so. The best they did was earn just below the legal limits of what one can earn before they start counting against your disabled status. Which is to say, they worked, yes, but only a little, and only to the extent that it never threatened their standing as a disabled person.
What a crappy system. Someone a few months back when I was in the hospital asked me why I was so angry at the System, and why I counseled anyone under 50 not to go for disability…and this is why. Because it paralyzes a person into doing nothing with his or her life, it keeps them mired in permanent poverty, and it encourages lethargy and breeds depression and recurrent illness. I believe it does NOBODY any good. Frankly. True enough, I cannot say that I am not grateful as hell that I have had a monthly income for all my adult life, as I have never been able to work an 8-hour day regular job. But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.
I was never, and never claimed to be, unable to do anything at all. I simply could not follow a routine of any kind or go into an office or workplace from 9-5pm. Since that made me unemployable in their lights, I was “disabled” and put on the SSI and SSDI rolls. But in truth, while it guaranteed me an income, it also sidelined me for life, because I didn’t have to do anything to survive or even to get ahead. And in fact I was not allowed to get ahead or I would have lost the very disabled status that I now needed simply to qualify for housing and food. It was a terrible catch 22 situation that only perpetuated itself once I was caught in it. I could never get out of it once I accepted the first check…
And it only got worse when I moved into the cushiness of subsidized housing. Now, not only can I not move (it is HUD housing not Section 8 so it isn’t even portable) but I am “used” to a piddling rent of 1/3 of my piddling income. I have stopped knowing how to scrimp and save and live on pennies a day…because I do not have to. Everything is guaranteed here. Everything is safe. But I am suffocating, because I have no life, and no prospects for any change or growth or movement because at age 60 my life is at an end…I will live and die in these measly 2 rooms, living on SSDI and SSI, earning nothing, doing art and storing it away for nothing and no one…What good is that?
That, my friend who wanted to know why disability is such a bad deal, is why I counsel anyone who is not close to retirement not to go the disability route, not unless you want to do nothing and live in poverty for the rest of your life, and are content with a life of watching TV and a strict budget, using food-stamps and coupons. Because it will come down to that, that is, if you have a TV. And lucky you if you have a car and can afford to keep it on the road….If not, think about whether or not you can get rides, because the bus can be a drag when it is raining or snowing and you have a lot of groceries to carry. You better keep the car in tip top shape in any event, because you won’t be buying another anytime soon on disability from Social Security…I dunno about you, but no one I know gets much more than $1000.00/month from SSDI and usually we get hundreds of dollars less than that. One car repair bill can rip a monthly check to shreds.
I dunno what most wage-earning people think a life on disability is like, but it isn’t a cushy life of luxury, not at all. I haven’t bought or been able to buy new clothes in nearly ten years. (I wouldn’t want to anyway, because I like to buy used clothing and not generate new carbon, but do you really think I could afford on my SSDI check the price of any clothing except Walmart’s, that abomination of a store?) I cannot even afford to get food at Stop and Shop, let alone new clothing anywhere. I buy literally everything used, at GOodwill, or I barter or get things free through Freecycle. Or I do without. The only new purchases I make are art supplies, when I cannot get them at tag sales, or through other outlets. And I do not replace my erstwhile beloved pet Eemie, because I know I cannot afford a cat. You make choices in this world. If you choose to go on disability, I believe they should tell you precisely what sort of life you are choosing. Or give you options so that disability is only one of several equally feasible ones. It ought not be simply: go back to work at the same job, at the same level of stress, or go on disability. That is stupid, especially if one has been psychotic. But it also ought not be, You have been psychotic, and we are certain it will recur, so you will never be able to work again. That is double nonsense. NO ONE can predict the future, or tell a single soul that a psychosis will or will not recur. Only time will tell, and predicting a good prognosis has been shown to pay off with better outcomes than telling a patient that the future looks dire.
Okay, enough for now. I hope I haven’t been too oldy and moldy-sounding. I’m just very discouraged about my own limited and stagnating life. I do not feel as old as the system is making me behave. I could have a good life for the next two decades or more and maybe even a career. After all, Grandma Moses didn’t start painting till she was much older than my mere 60 years, and she had a long painting life ahead of her. No one told her she should just hide her head in the sand and wait to die. Or if they did, she ignored them and went ahead and painted and painted. I won’t give up on art, but I am frustrated and feel utterly stymied by a system that has clipped and cauterized my wings.
Finally, this is the large Turtle that I owe Tim, as it looks at present. I am going at it very slowly but surely.
Sorry this is so unprofessional but I hope it is helpful and at least a little entertaining. I think i at least managed to get the entire 8 plus minutes uploaded to Youtube this time! 8D (that is an emoticon for me, in round glasses with a big grin)