Monthly Archives: November 2008
I had an interesting experience yesterday. I inquired about membership to a dating service. For my own safety I will not mention the name of the dating service. I applied online and the site notified me that someone would be getting in touch with me. I gave them my e-mail address, my phone number, and the name of the town I live in, and basic info on myself, that I am single, and so on and so forth.
Someone called me yesterday from Utah and explained he was from a parent company that does these dating services. I looked up his number and he was indeed calling from a landline in Utah, and he had a Utah twang to his voice. He told me about his services. Here is an excerpt from our conversation, paraphrased:
“So I take it you’re looking for a better dating situation.”
“Well, actually, I’m not looking for marriage or anything like that. Just someone I can have coffee with on a regular basis, someone special.”
“Well, I think we can help with that. Let me tell you about our service. We aren’t an internet dating service. We meet with people one-to-one. You meet with your dates and get to know them in person. Now, can I verify a few things?”
“Yes, but I actually consider myself to be widowed. I had a boyfriend who passed away. We’d been together a long time.”
“Okay. I see. And you’re how old?”
“Okay. And it says here your occupation is in the arts?”
“Yes, I’m in graduate school at present.”
“But how do you support yourself? That’s what I meant.”
“I–er–have a disability….” (Apparently this wasn’t the wisest thing to say.)
“I see. Are you able to drive?”
“No, I’m not.” This I said with conviction and confidence. I am not ashamed of my inability to drive.
“Oh, I see. And you put on the form that your income is less than $25,000.”
“Okay. Well, I also want to tell you that our company holds many events for singles, not just individual meetings, that might interest you. We have dinners, movie nights, and even singles vacations and trips. And we screen all our members. You don’t have to worry about a thing. We do criminal background checks and we screen for serious mental illness, don’t worry.”
“We’ll be getting in touch with you by e-mail or phone in a few days.”
Can they do this? Can they discriminate against people with serious mental illnesses? It is against the law to ask a person what their disability is, or even if they are disabled. It is against the law to ask a person if they have a mental illness or to assume that they have a disability of any sort, including mental illness.
I’ll keep you posted.
It seems that I have very little hair remaining on my head. When I mentioned my thinning hair to my sister-in-law last Passover, she suggested that I have it cut. How dare she! Despite the fact that it was a well-meaning suggestion, I took offense, and was sorry I brought up the topic in the first place.
Here is a recent photo of me. You’ll see what I mean:
It doesn’t show in the photo, but I still have my wonderful braid. So what am I complaining about? I am happy. I have my mental health. I can walk. I can talk. I don’t have Tardive Dyskinesia–it looks like it isn’t going to get any worse than just a little tremble in my tongue. I will be graduating with my MFA in Creative Writing on JULY 12, 2009. I am 50 years old and my body is only falling apart a little bit, not a lot. I have the second half of my life to look forward to. I just found out I’m GETTING PUBLISHED AGAIN – details soon! So what is the big deal about hair?
You tried suicide; this is your punishment. Six months labor at the farm in the Berkshires, six months of isolation in this place of beauty. Maple syrup laps at your feet. You tried suicide; this is your punishment.
You are alone here in the presence of others. It is the place of Babel. You speak to the others, try to reach out; all you receive are grunts in return. The guests are medicated. You are medicated. The nurse brings each guest his own medication in little envelopes at each meal, is own private words, to swallow alive. This is your punishment; this is Hell.
You disappointed your parents and so they sent you here. There were delighted with this work farm. They talked to the director in hushed words behind the door. You will stay, they told you. This is the answer. This is the Miracle Cure. Arbeit Macht Frei.
You remove your boots to find frostbitten toes. You don’t dare tell your supervisor. Your back aches from shoveling snow six hours a day. The others have been shoveling cow dung. You tried suicide; this is your punishment.
One man, though, is not like the others. He doesn’t grunt. He speaks, in your language. He is handsome and talented. His artwork fills the walls of his room, and spills into the hallway like a bathtub overflowing. House-parents put restrictions on both of you. Close friendships are discouraged here. Don’t let them talk, ehrenmanner, they’ll plan a riot. They send him to a halfway house. You feel that you will die of loneliness.
You tried suicide. Now, contact with the outside world is further limited. The only telephone is a pay phone for which you have no money. You call your parents collect. You beg them to send you to a hospital.
They pronounce you well one day, release you to the world. What good has it done to be shut up on this farm, only to be thrown to the wolves? Now, you cannot bear the brightness of it, the reality of freedom: A car. Roommates. Electric bills. For the farm, in all its cruelty, sheltered you from the world. The Farm, like the cruelest state hospitals, became a routine, as all prisons become. You learned every loophole, every weakness in the system, every “way out.” And now, you had nothing to fight against. You were like the kid with the bag of Halloween candy who ate too much. You didn’t know what the do with this freedom that now was turned against you
You tried suicide; this is your punishment.
This is an excerpt from my wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness, which is now available in e-book form from Chipmunkapublishing. Click here to download the .pdf file. To read excerpts at my home site, click here. The book will be available in paperback form in May 2011.
To read my other article about Gould Farm at this blog, click here.
ROAD WORK AHEAD
“I’ll bring you with me to South Boston,” Joe said to me over the phone. “There’s construction, but the ride will help you get your mind off your dad.”
I had been on the phone all morning with family members, discussing funeral plans. A trip on the Mass Pike and the Expressway would be welcome.
Joe asked, “How’s your mom taking it?”
“It’s weird,” I replied. “After she found out, she stayed up all night doing her taxes.”
My father’s death had come after a long struggle with bladder cancer. He had fought chronic pain for years. A few weeks before he passed away, he crossed the invisible line that meant he was dying.
Then one day he perked up, joked around with the grandchildren, and almost fooled one of my brothers into thinking the doctors were wrong; Dad would live. When I heard my brother’s reaction, I was livid, for some reason. “He’s going to die,” I replied, sounding more forceful than I had intended.
Perhaps my viewpoint had something to do with the fact that I’d endured 18 years of devastating mental illness; I’d seen more than most. My dad’s death came at a point during the years my illness was at its worst. A medical student, a stranger, took me aside, saying, “You have had the best teatment we could give. You’ve had this problem most of your life — what makes you think it will disappear? You must accept that the illness won’t go away, not entirely, anyway.”
I bowed my head, his words streaming in my mind like tears.
“I know this is upsetting for you,” the student said.
But I was relieved. “I don’t have to fight it anymore.”
One day, my dad had said to me, ” I know what it’s like to have something that just won’t go away.”
I didn’t know it then, but the illness would run its course in a year, and would dissipate like a spring dew.
But I did know, as I do now, what both were talking about. And I was grateful for their words.
As Joe drove around the Ted Williams Tunnel, I was amazed at the detours posted. The gravelly road under us full of potholes that had emerged since the April thaw. “So the funeral’s tomorrow, right?” Joe asked.
“Get this: My mother said she was glad Dad didn’t die last week, because the relatives wouldn’t be able to come up for the funeral on account of the snow storm.”
The road flattened, but only momentarily. A huge orange sign ahead of us read, ROAD WORK AHEAD, and then EXPECT DELAYS. I thought for a long time about what this meant.
The image would stick in my mind for a long time.
Joe swore under his breath as a cop stopped the flow of traffic to let some trucks pass. “See that?” he said. “He should have let me go.”
But I knew we had no choice but to wait.
This didn’t post properly before. Sorry. Here it is again:
When I was ill, nobody listened to me, or at least nobody heard. When and if I spoke, I didn’t make my point well. My tongue didn’t have the right words, and I was timid. Now and then a word came out: “wind,” “grow,” “china doll”–but the words wouldn’t line up properly; they fluttered in the air before me like downy feathers and I couldn’t catch them. I tried to speak to the doctors, and to them there were even fewer words; all that came out was rage, or tears, or silence. The doctors responded, mostly, by turning away. I saw them turn like figures on a cuckoo clock: methodically, with clicks of their shoes, timed just so. When I saw their suits and ties, I sickened.
When I was ill, I was misunderstood, that much was true; I realize this only now that I have a grasp on things, that I can see myself as an ill and a well person side by side. I recall that when I was ill even the most basic tasks of communication daunted me: eye contact, body language, even sentence construction: “I”–“need”–“food” quickly became “I food” and finally “I,” a single eye that watched the others eat pancakes and fake maple syrup with plastic knives and forks. So I squirreled away my hopelessness, my angst, my visions, and kept them locked in the murk of my mind.
When I was ill, I had everything in storage. They talk about keeping feelings “bottled up;” well, I kept myself in boxes, as if any day my mind would relocate to a new residence. I remember those boxes well, the smell of the dusty cardboard, the clear packing tape, and the pressure of boxes piled on top of each other, waiting and waiting for someone to come move them to a better place.
When I was ill, I knew well the sound of tap-tapping of nurses’ shoes on tiled hospital hall floors, the hiss of the blood pressure device, the call: “Come get your meds!” I knew the sounds of the hospital at night: the whir of the copy machine, the whispers of the night staff; I could even hear the turning of newspaper pages the night staff read when they tired of doing their “charts.” Often, it was during those night hours that I would, if I were allowed, get up and go to the dining room, dressed in a couple of johnnies, one facing forward, one backward, with a pad of paper and pen. A drip, and then a trickling stream of all that stored misery came out on paper.
It wasn’t much at first, just a few words; perhaps they made sense; perhaps they did not–it mattered little. I only stopped for a moment to heat up my leftover macaroni and cheese in the microwave, gobble it down, and wash it down with skim milk out of a carton, then I returned to my writing.
As time passed, this became a gush and rush of emotion splattered on the pages of my journal. I tended to repeat myself from day to day: “I am Evil.” “Everyone can see the Evil in me.” “I cannot rid myself of Evil.” As I passed from hospital ward to halfway house back to the hospital ward, I brought my journal with me. Occasionally I shared pages with the social workers and doctors that attempted to help me, but most I kept hidden in notebooks. I wrote profusely and with great fury and flurry, especially when I was smitten with feeling. There was much I kept hidden in the pages of my journal; indeed, there was much packed up in my head at the time, some broken like china packed improperly, in haste.
Then I became well, which happened rather suddenly and dramatically. It was not due to any sort of medication, but rather an act of Nature; and Nature happened in a whirl, seemingly overnight, on my 40th birthday. Yes, I was still the embodiment of Evil, but the Evil Being that had lived in my head for years was suddenly gone, and as if I were suddenly relieved of a tremendous weight, I lifted myself, feeling as though I could stand upright for the first time, my spine no longer hindered by curvature, by heaviness, by bone deterioration, by grief. I could breathe real air, not the stale air of illness I’d been breathing for so long, the air of hospitals and shrinks’ offices and the stench of meals on trays that reeked of nursing home food.
And then I had nothing to hide anymore. I stopped keeping a journal. Eventually, I started a blog. There was just as much conflict to deal with in life, perhaps more, but was less pressure in my life, less to fight against, no Evil Being, no rash of stuff in my head. The outpouring of feeling stopped. I wrote pinched e-mails that lacked outbursts of unrestrained joy or tears, and never shook. I suddenly found myself unable to cook up true passion as I had when I was ill.
I no longer had to fight against my own head and the Evil Being that lived there. I no longer had to fight so I no longer had to push against myself, that isometric exercise I had completely forgotten about. A muscle that pushes against another gains more strength than does one that simply pushes air, right? Is this why some people complain that when they get well, they’ll have no drive to write, no muscle? Is this why patients, particularly those that are the artsy sort, tend to go off their medications to deliberately fall back into illness, out of frustration because they want some of the passion they once had?
I, however, chose to stay in the realm of wellness, as madness scared the heck out of me; even passion would not pull me back to where I was before. Did I create passionate work? You could say that I did; you could say that I did not. My concentration, organizational skills, memory, stamina, and confidence had all improved tenfold–imagine: the interference in my head was gone, the Evil–gone, gone, gone! I could write a paragraph without someone telling me that it sucked. I could think my own thoughts. I could write my own words.
I wrote every day. I wrote a draft of a novel, then decided I wanted to go to school and study writing. This I could not have done in my illness days, in my days of heightened feeling–passion itself would have betrayed me. I was able to concentrate on my school work and graduate college, and go on to graduate school. This I would not have been able to do had I been ill.
Do I miss the angst, the feeling, the passion of my illness days? Yes, I do, but not enough to pack myself back into boxes and suffocate in my own crap, not enough to walk those halls and listen for the tap-tapping of doctors’ shoes so those men in suits could present their verdicts to me as if on a plastic tray from the kitchen “downstairs,” not enough to give up what I had earned: wholeness–because what I had now was so precious that I had to be sure to tread even ground to keep it upright, balanced, and fair. And what I had now was not dry; it was so dear to me, so sweet, so luscious and full. I deserved every bite, every lick and taste I could muster. I relished in it. I suckled. I slurped. It dribbled down my chin and onto my t-shirt–and though it wasn’t the same passion I’d known in earlier days, it was a fruit of magnificent beauty and weight, and it spoke to me in words that–pen in hand–I could at last comprehend.