Furious Seasons

May 10, 2006

I’ve Never Been The Naked Guy

A couple of years ago I went on a date. Things were going well and she and I had moved from beer number one to number three. We'd gotten to that point where old relationships were being discussed. She mentioned that she once lived with a bipolar boyfriend. I told her that I was bipolar. She had a nice tan and the color in her face changed then. Her boyfriend, she said, had melted down once and run naked down Boren Avenue on Seattle's Capitol Hill and ended up in the psych unit at Harborview. She said he hadn’t taken his meds. Then she said she had to leave. We split the bill and I tired to talk with her on the sidewalk. I told her I'd never been the naked guy and that shit with bipolar and me had played out fairly well in recent days. I'm not him, I said.

I can't take that chance, she said, and left me standing there.

I was pissed and not because I wasn't getting any love that night. I was angrier over her gut assumption that all bipolars come in the same size. That's not true at all, I tired to explain to her in an email later that evening. Some of us have done really damn well, sticking with treatment and meds even when they didn't work, and doing whatever we've had to do, psychologically and existentially, to claw back into American life. And we've gotten there. Maybe not most of us, but a few of us at any rate. I explained to her that I was one of the few and planned to continue wearing my clothes. Never heard back from her.

It's funny how people carry long-held beefs with the mentally-ill and hold them against people who are examples of exactly how the system is supposed to work. Allegedly we are the ones American society is supposed to want to embrace in our new age of no shame for those beaten-up by nasty illnesses and abnormal behaviors. But that hug-fest rarely goes on.

I saw an ugly example of that dynamic play out on a larger scale last Thursday evening. That night about 100 residents of a traditionally lower middle class neighborhood gathered in a library conference room to denounce a planned project to build apartments for homeless people with mental illness in their neighborhood. This is a neighborhood where residents paint themselves as progressive and burning for diversity in American society. I'm sure if you asked them if they were down with "social justice" for America's disadvantaged, they would have gone glassy-eyed and nodded their heads.

But from their mouths I heard the same basic bullshit then that I heard from my date. The mentally-ill are dangerous. They don't get better. They're going to ruin our dreams of gentrification. The dicey part for me was that I was at this meeting as a reporter and I had to breathe deeply several times. There's only so much hypocrisy I can tolerate. You can judge how I handled it in what I wrote for my paper.

As pissed off as shit like that makes me, I am more frustrated that I am not more the norm than I am the exception. That's what I am told is the case. Typically, researchers pin the blame for patients getting poor results on patients not taking their meds. I place the blame elsewhere. I blame researchers, psychiatrists, pharma companies, the media, policy makers, employers, advocates and families for turning the game into one of meds-only. That's a psych patient's only option when the bad voodoo settles on their world: take your meds. And if you don't have good results, take more of that med. And if that doesn't work, or if it fucked up your body in the first place, then switch to this other med. And then take more of that, or switch to something else. And, then, let's add this in with that. And, OK, let's add a third med. That ought to do it.

The maddening thing is that when that doesn't work and a patient starts backing away from some of their meds, then the patient is at fault and labeled non-compliant. That's crazy. And that's what I wanted to tell the woman I had beers with and all those pretend-progressives at that meeting (many of whom were arguing for forced medication). That they are crazy because there isn't a psych patient in the world who wouldn't do anything to feel better and make life work out for them. There isn't a bipolar or schizophrenic who wouldn't take some gnarly meds if they produced robust results for most of the people most of the time. They would take them even if they had to sacrifice their bodies in the process. But that trade-off just isn't in the cards for most of us.

My experience is all of this is fairly unique. I've taken my meds without fail for 17 years even when they weren't giving me more than half results. Only for four months did I do a med-free experiment and then I was back on three meds that were beating the shit out of my body and mind and not working with a damn. It was only a couple of years later that, out of desperation, I went to my doctor and said I wasn't going to take all my meds anymore, that they were eating me alive and not giving me the kind of results I had a right to expect. It's thorny times like that in your life that often produce a strange wisdom. You take a chance and see what happens. I went down to one med nine months ago. Despite a few short-lived setbacks, I've been remarkably well. Clear-headed. Running my mind instead of my meds running it for me. Even my doctor doesn't have much of an answer for why this is working. For why I am "recovered." For why I am one of the few and not the norm.

I don't have a firm answer either, aside from a string of good luck. But I know from long experience that if my present regimen were going to fail me, then it would have already. So there's more than luck and random chance at work here. I want to know why this is.

And not knowing pisses me off. Because I want to know what we can do for each and every psych patient to make them whole again. So I don't have to go to anymore public meetings and hear the squealing fears of urban MIMBYs as they trot out the old assumptions that the mentally-ill are not redeemable and that they need to be forced to take their meds so that all the normies feel better about themselves. And so that I don't have to go through another date assuming the worst about me because of the worst that went down with someone else--all because their meds were intolerable yet America's only answer for them was to take more meds.

Posted by Philip Dawdy at May 10, 2006 12:01 AM

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Comments

This is an unbelievable story. It is sad, it sucks, and pisses me off that she walked away. Her loss. I recently googled a group home situation one of my kids could have been sent to, and the only thing that came up, ironicially was a minutes posting from the City Council meeting regarding this home, being set in a residential neighborhood, the homeowners association wanted it not to happen, for fear the clients 'could get out of hand'. I sat and read this, and thought, wow. This is my daughter they were addressing in this meeting that had happened a year before my daughter was even diagnosed. She paints houses for Habitat for Humanity, and most likely would work on that house if it was needed, and most likely, the neighbors on the street would have commented how great that was that she was helping out, and gossip about what lived in that house, prejudging people is what is wrong, it is the ultimate stigma, it is was fuels the fires and keeps self esteem low. When my other daughter did run down a road in my neighborhood, I was asked by a neighbor if her meds were going to 'help this'. They wasted no time hanging around outfront talking in front of us, while we and 3 policemen tried to get her inside the house safely. What I get now, are polite half smiles of some, some give nothing in the form of recognition, the ultimate removal of eye contact with that 'house where the crazy one ' lives. She ran down the street with her clothes on. Same judgement. Are the neighbors glad she is gone? (back to the hosp)I would place bets they all sighed relief. I too, saw the faces turn white as a sheet when I told them she had just gotten out of Western. What you wrote is painful to read. I do not understand people. Also, on the meds approach, oh have I heard that so many times re: my kids, it is the first thing out of anyone's mouth if someone is having a bad day, "did she/he take their meds". Ive also been asked by staff at Western, that if I were to write any other letters, would I please ask for funding for therapists? the staff are referree to fights, arguements, and basic manangement of a ward of people not feeling well, and tell me they are not qualified to do the therapy some there so desperately want and /or need. They get meds only, and if lucky, are sent home to function without many coping skills/tools. The art of the science of medicine is in this realm, we really do not know why one med works for one and not another, why do you (Philip)do so well on one med? why didnt my daughter do well off of them? why dont doctors have an answer for her rapid and fast decline off of meds, and how they cant get her brain back? they want it to happen fast within their system (stabilization)yet tell the patient, that it takes time for meds to work. But contradict themselves when they push for beds to open. Soon as someone remotely looks functional, they can be released, too soon. The entire mental health topic is so complex, so hard to understand, how any of it works, I have yet to find someone to step up to the plate to really study my daughter's case, intensely, and never will, who has the time, money, or interest.
I was told in the school system when my daughter was younger, "dont be afraid of labels, get her an IEP in place to get her through the school day, though she will be labeled, 'Emotionally Disturbed", that doesnt matter, it is just paperwork." Labels matter. Society has a label for mental illness, and anyone who divulges anything beyond 'depression' gets lumped into the "Watch out, something could happen" category.I was told that by professionals re: my daughter being released to home from one hospital."we are afraid something will happen".
Afraid. They had it right didnt they? people are afraid of mentally ill people.
I work for a living in this system, and my life is better as a result of meeting and loving many people with mental illness. Mental illness, is like color of skin...why should it matter? why do some people see it as a barrier, or even as a topic? I see the person. I see the person, not the illness.I see the person, not the skin. Some people just dont know what they are missing when their head is up their ass being judgemental, and afraid. As a sidenote re: me being a parent of kids with mental illness, I have also heard this statement regarding myself :"you know the Apple doesnt fall far from the tree.". Yep. As a parent navigating this system on behalf of my children, I have been judged myself, and if I want them to really hear me in meetings, they can never know anything about ME.I have been told recently, that this person (in the school system) was glad that a student was 'institutionalized', because their parent was also mentally ill....So I attend meetings, as a matter of fact business deal advocate, leaving the emotions out of it, to get what I can for my kids, and meetings whether with doctors or teachers, are all impersonal with me. I hate that. I would love for them to know how hard this is, but when you let that out, their ears perk up, ready to slam the gavel down. No one knows to this day what drives me. Gotta get my job done emmulate their system, kick some butts and appear confident. Some parents cannot pull this off, and in the end suffer the same judgement their children do, and frankly, I know Im scrutinized, constantly. To the point of them almost breaking me. I will not let them.(and I will never say if I have a so called label, for me, it is not important for anyone to know what I am, because I know who I am, and Im a hella good person, and am getting a lot done, and it is like a game, really, let em wonder)
That is what we all must know: Do not let the society labels and the people who slap them on our foreheads, break us. Do not let them win. Do not let them break your spirit.
Gotta fly high above them all, where we, as human beings soar above people like this daily.
The one who walked away, let's just place her in that 'shallow' category. She clearly lacked human kindness, empathy, concern and compassion. I dont want anyone in my life who isnt driven by kindness, empathy, concern, compassion, genuine concern, and love. Shit anyone driven by anything else, is not worth a beer.

Posted by: Stephany at May 10, 2006 01:17 PM

Along these lines of judgements, and bringing back the topic of the role and who is in the "survivor" category:
I am asked many times a day, a week, a month, "How do I do it?".
Let's pick that apart. How do I do it. What exactly am I doing? Am I surviving the depths of depression and surviving? am I surviving moodswings and depression and getting through the day? What did you want to know again? "How do you do it?" Do you mean manage having 2 adult aged children with mental illness? What exactly am I doing? The question to me should be: "How are your kids doing it?" You see the focus, from Professionals especially, is how hard this must be for me. Well of course it is hard for me to see someone I love suffer. But it is not about me, and how I do it. Why do I advocate? Bottom line is, it is not easy to gain services in the mental health system alone ,without an advocate. What drives my advocacy? my love for my kids, I see them, not the illness, which has landed me a few steps backwards in my gain of services for them a few times, because of my love , being unconditional, blind, I found out the hard way if I stepped up to the plate to help, the services werent there.I couldnt gain any . I had to learn to remove my emotions to advocate for them, to help them get services that are there, but never offered up unless pushed for, because as we all know there is a shortage of funding out there. So at the end of the day yesterday, when I worked, came home and spent 2 hours on the phone advocating for my kids, one person I was dealing with asked ME 'How do you do it?'. This person was referring to having mentally ill kids. I am not doing it. They are. Ask them. How did my youngest go to school everyday never giving up, even if her eyes rolled up from drugs she was on. Ask her. Ask my oldest how she goes to work, regardless of the shitty suicidal ideations taking over her mind. I am not doing anything. Yes, I have mashed potatoes and gotten dinner on the table with a raging child at my feet. How did I do that? ask me then, not when my daughter is not home and in a hospital. Well I mashed the potatoes, and she got up and ate.Life was just life. My kids have more to manage than I do. Why do I do it? could be a better question. How are your kids surviving the stigma of mental illness? Even a better question. But nope, the question I get is aimed at me, as if I have something enormously wrong with me. Now if I had breast cancer, got chemo treatment, went to work, made dinner all in one day, then you can ask me how I do it. It is that survivor thing. Who survives? Survive what? The simple answer to 'How do you do it': because it needs to be done. Problem solving, creating win/win situations, I'm good at it. But when they ask me how I do it, I just think about my kids and how they are the ones doing more than me. They are surviving mental illness in this world of stigma. I hate that word stigma, it is actually discrimination at its best. I suppose if I were to answer the question, which is really so complex it is hard to answer, harder to answer than anyone can imagine.I guess I would say,~ One foot in front of the other, just like everyone else, always mindful that someone else's feet hurt worse than mine. Being mindful with every step I take, that I really do not know what it is like to walk in another's shoes, yet I will compassionately tie their laces, if they need help.

Posted by: Stephany at May 10, 2006 02:33 PM

I need to add there is another side of what drives me, and that is the other Professionals that are rude, uncaring, and make sure that I know when they see me, that I am a pain in the ass. Pain is an energy force, so once an incident like that happens, I may hit the ground for a few days, but get up and am more driven than ever, using that energy that was sent to me from another human being meant to tear me down, to push even harder. So the people who have been kicked in the gut for one reason or another, dont let em win. When Ive been told "Im the doctor" it just drove me further forward. When I was told if you want to act like a psychiatrist, then become one, made me take to steps forward. So with all of the energy force behind the mental health brigade, why cant we get a movement with integrity, intellect, and loud mouthed fundraisers going for research, etc? All of the pain and agony, suffering, gut punches, bad comments:weave it together into one large force for the positive. Take these negative experiences and shove it forward. Who is afraid to do it? I think this is the culprit, the word afraid comes up again. The people with mental illness sometimes cannot afford to step out of the shadows for fear of losing jobs, friends, neighbors. So who will drive this bus?

Posted by: Stephany at May 10, 2006 02:58 PM

I don't have health insurance right now. I'm so dedicated to staying sane that I'm putting just under $400 on my credit cards to pay for my meds each month. lamictal is damn expensive.

Posted by: kara at May 15, 2006 04:36 PM

Distressed per my neighbors opinion of my daughter, I started reading this to pass time on the way to the psych appointment today.

I came across this entry and saw these words:
"..Because I want to know what we can do for each and every psych patient to make them whole again. So I don't have to go to anymore public meetings and hear the squealing fears of urban MIMBYs as they trot out the old assumptions that the mentally-ill are not redeemable and that they need to be forced to take their meds so that all the normies feel better about themselves."-Dawdy

I thought, yes, that is exactly what happened in my front yard. To me.To my daughter.Then I saw my own long, long replies. I had no idea, something was to happen now, in November with my neighbors.

Then I read in one of my posts here, something I said :
"That is what we all must know: Do not let the society labels and the people who slap them on our foreheads, break us. Do not let them win. Do not let them break your spirit.
Gotta fly high above them all, where we, as human beings soar above people like this daily."-Stephany

Well, I need to read my own words, and get above it all again.

What really bothers me, can be read on my blog in a couple of posts about it.
Why am I shocked at my neighbors being open and wanting to know if my daughter is under control and on meds?

Damn it all.
Thought this world had moved forward a bit.
Wrong. Stigma is an ugly word, and it's here to stay. I don't know how to remove it.

Posted by: Stephany at November 6, 2006 01:58 PM