I thought I’d share this glimpse of Harvard’s finest eateries. I walk past here every time I go to therapy. Sadly, Dr. R is leaving in November. When I look at this photo, I will think of her. However, knowing Dr. R, she probably never eats there! She’s the quiche and salad type.
I was in the hospital from May 26th to June 13th, and then again from July 1st until last Friday, when I was released.
Before the first hospitalization, I wrote: “I cannot take responsibility for myself anymore.I have tried and failed.I need help.I need help and am unable to ask for it.”
I determined later on that I’d inadvertently stopped taking my medicine.Although I remembered taking it, I realized the Beings had tricked me again.Simon and I discussed it, and figured out that most likely I hadn’t taken my meds for days, perhaps even a week.
Each of my hospitalizations has had a theme to it, and what I had written on May 26th, “I need help and am unable to ask for it,” summarized the hospitalization perfectly: learning to ask for what I need was my biggest challenge at that time.When I was discharged, I clearly hadn’t learned that skill. Two days after I got out, I was waiting for a bus, barely able to walk with a cane due to my knee injury.While I waited, I saw a man leaning against a heavy trash barrel.How I wanted to ask him to move, to allow me to lean on the trashcan and rest my aching knee!But I was completely stymied.I couldn’t approach him.I couldn’t ask for the help I desperately wanted and needed.My knee injury worsened, and the next day I couldn’t put weight on my right leg at all.
Now, I am learning.Simon and I decided that the only way we can come close to a guarantee that I’m taking my meds would be to take them in front of the webcam while he watches.This is what I need to stay safe.Instead of feeling as though I’m being treated like a child, I feel comforted knowing that I will see Simon at a certain time, every day.I feel loved, that my needs matter, even to another human being.
The second hospitalization was about anger.When asked to write about my feelings, I wrote this list:
I’m mad at my mother because she’s a lousy mother
I’m mad at my brothers for not calling
I’m mad at Simon because his phone is always busy
I’m mad because it’s painful to walk
I’m mad because I have a mental illness
I’m mad because I gained 100 pounds from Seroquel
I’m mad because nobody understands
I’m mad at Joe for dying
I’m mad at God for taking him
I lashed out at everyone those two weeks–other patients, staff, even my social worker.The outburst generally ended in tears of frustration: I was clueless as to where this monstrous anger was coming from–I didn’t know I had it in me!–and unable to control it.
I realized that this coming August 19thit will be two years since Joe’s death.I cried every day the first week I was in the hospital, and my doctor said that anger and sadness were closely linked, that what I was feeling was normal and even expected.How bittersweet it was when the Red Sox won the World Series, and I couldn’t hear Joe’s shouts of joy, or see his ear-to-ear grin!I can no longer muster up the excitement I once had over baseball.I can’t listen to the sports stations without getting tearful.I miss him and sometimes am unable to bear the sorrow.And this is the weirdest thing of all: I wish I could tell Joe about Simon, that I couldn’t possibly have developed my relationship with Simon if I hadn’t experienced the caring and pure joy I gleaned from knowing and loving Joe. In this new world I’m experiencing I am continuously loved and guided by Joe’s spirit, and nothing could be more right and more perfect.
(Photos of Joe from our vacation at the Baseball Hall of Fame and from my graduation are posted at my site, www.breakdownlanetraveled.com.In my book, I changed Joe’s name to Doug–occasionally Dougie–and I now wish I had left his name alone.)
Regarding a hospitalization being “about learning to ask for help” or “about anger,” that’s bullshit. Those are the kinds of things therapists and social workers would love for us to believe. Hospitalizations are about how much the insurance companies are willing to let you have. Hospitalizations are about underpaid nurses. Hospitalizations are about being so sick you can’t manage without constant observation, supervision, and intervention. Hospitals are full of people in pain. Yes, it has a lot to do with asking for help, it has a lot to do with anger, but those are secondary to the pain. Please, please, make it stop.
I used to ask for Morphine and Demerol to ease the pain I felt from The Thing. The Thing was an Evil Being who lived in my head and tortured me for years.
The doctors thought that by asking for painkillers I was subconsciously making reference to my father, who at the time was suffering from cancer. I think the doctors were subconsciously denying that I felt pain because of The Thing; I think deep down inside they did not believe The Thing existed–but he did! He was real and he lived in MY HEAD! The pain was real; I know that, and the medications the doctors were giving me weren’t doing shit.
It would be accurate to say that in 1996 and 1997, my hospitalizations were about The Thing. It would be accurate to say that in 1996 and 1997, my entire life was about The Thing, which was sad indeed.
Skipping to this August entry, I am frightened by the state I was in:
DEPRESSION, DAY SIX
This depression is bearing down on me as if I were inside a trash compactor.They’re coming after me and there’s not much that can be done.I feel like lying on the floor and pounding my fists into the rug and screaming.Please, make it stop.Please.
That was only a little over a year ago. I can recall feeling that way during brief periods (generally between two and five days) over the past year up until the time I started taking Topamax; since then, I have not had any depression.
It amazes me that I was able to write at all while feeling that bad.
Over the past couple of days I opened my journal and for each day could only write a single sentence. The reason: I was so happy; I didn’t have any complaints.
It occurs to me that people aren’t visiting my old MSN Spaces blog site and that I may as well re-post what I’ve got there, in segments, here. I thought I’d add a bit of commentary as well, to ensure that the entry is not simply a repeat of the past, but a glimpse of the past through a peephole of the present time. I began my blog on June 22, 2005, though I didn’t post the entry until July 18th. Here it is:
A CERTAIN IMPERFECTION
Sitting at the computer waiting for Simon to log on, I casually run my hand over my forehead, and then, skirting my glasses, I touch my cheeks–right first, ten left–my temples, index finger gracing my jawbone and ending at my chin.There it is: a zit.No, zits plural.A bunch on my forehead that never seem to disappear entirely, one just under the corner of my lip, and the zit I hate instantly: a nasty on my chin.This is not supposed to happen; I did adolescence decades ago.How much of this will Simon see when I put my webcam on?He knows the stresses I’m facing, stress often being the cause of pimples; he’ll overlook, more likely he won’t even notice.
I switch on my cam and check my face in the window that pops up on my screen, as if it were an image in a mirror.My forehead I can forgive.These inconveniences diminish among the horizontal wrinkles and short vertical “worry lines,” above either side of my nose, which I developed during my last relapse in 2000.Nothing to be upset about there.The corner lip zit is barely apparent under the overhead desk lamp, but the zit on my chin, the largest, whitest, worst affront, is mountainous enough to cast a shadow and even has a shine to it.
Simon loves me anyway, I assure myself.He won’t care about my pimples unless they’re troubling enough to get me into a drastic state, such as a severe depression (pimples? not likely), or the onslaught of torturous Evil Beings living in my head that, recently, have been showing up at even the slightest stress.
Simon and I been together for several months now.A disabilities dating site (www.whispers4u.com), instant messaging, and cheap phone rates gave us the chance to meet and grow to adore each other, though we live an ocean apart and have never met.It is prodigious that Simon accepts and even loves my imperfections.He gets a kick out of my often impractical ways of doing things, dismisses my 100-pound weight gain from Seroquel, and, notably, accepts my illness, or shall I say illnesses: schizoaffective disorder and a “non-specified” eating disorder, with grace; and has an attitude that astounds me, including the willingness to do everything in his capacity to help.
And now the voices have returned.Just before I switch off the cam, I notice my cheeks falling, the worry wrinkles easily spotted in the image.This relapse wasn’t supposed to happen.At my website (www.breakdownlanetraveled.com) I imply that I made a complete recovery.Agreeably, the worst of the Evil Beings, named The Thing, has been history since 1998, I assure myself, shuddering at the tiniest mention of him.At least that.But I’d frequently had breakthrough symptoms, despite cooperation with my med regimen, which were generally manageable until May of 2000.And now this, this relapse, yet another imperfection in my history.
I hate it.I hate myself and this horrible zit.I continue to rub the protrusion, knowing I will only make a mess of my face in doing so.But I gauge into it with my nails, squeezing and mangling until clear fluid and blood appear on my fingertips (the latter smells like iron rust, I note); digging deeper now–hating, hating everything about myself that isn’t perfect, that goes against the grain of healthy skin, healthy mind–I hate my yellowing teeth, my eyes that won’t see right, the flab that used to be my waist–I hate my illness itself.Suddenly, it all seems wrong–I am an imposition on the world, on the people that I love, especially on Simon, my brothers–even my dog is suffering because of me!I grab the offending bit of flesh between my fingernails, and yank it out.So there.
I fight the muscles in face as they stiffen and my eyes sting, too.Don’t cry, don’t cry.Not now.Later.Maybe.
You have to decide which imperfections you’ll fight and which you’ll just let run their course, and making these choices is one of the toughest things you’ll ever have to do.Illness happens.I get sick sometimes.I have to accept that, accept the unavoidable, and realize I can muck up everything fighting battles that can’t and shouldn’t be won, when surrender itself very well may be the better course.Patience exists for a reason, and it’s about time I learned some.
I dab my face with a tissue, then, seeing the amount of blood, hold it to the wound, pressing until the bleeding has stopped.The screensaver has switched on.I move the mouse slowly and deliberately across my desk, realizing the reason I came to the computer in the first place: to write.I am a writer, after all, messed-up face notwithstanding.I open a new Word document, hoping to say something worthwhile, and begin my blog: June 22, 2005.
Not bad for a first entry! I remember putting much more than a day’s work into this. I wrote it carefully and deliberately, making sure the rhythm (and climax in the paragraph that begins, “I hate it”) work as best as I can get them.
Regarding the content–I have never admitted this in my blog before but I might as well–it’s sad what happened to Simon and me. We simply drifted apart. Whether it was the ocean that separated us or something else doesn’t matter. I don’t know when it was that I suddenly realized the romance had seeped out of the relationship. What was strange was that I accepted it as one might learn of the passing of a distant cousin one had never met. I have no explanation.
A reader brought to my attention some confusion regarding the phrase, “I will not stoop to their level,” in the previous entry. By this I didn’t mean I wouldn’t associate with people “at a lower functioning level” than myself, but I would prefer not to hang out with people who choose to identify themselves through their illnesses. It is because I see myself in them, and it scares me, first of all; secondly, I don’t want to fall into that trap again. Of course, sometimes one is so ill that the illness automatically defines oneself, and that is sad indeed. But most of the time, it is a choice.
I just changed the home page of my website.It used to read, “My name is Julie, and I am a mental patient.”It now reads, “My name is Julie.I am a writer and have been a mental patient for a number of years.”Big difference!Why didn’t I catch my error before?Had my intention been to shock people?Because by introducing myself as “mental patient” the way an alcoholic might introduce herself at an AA meeting (“Hello, I’m Susie, and I’m an alcoholic,”) means my identity, my raison d’etre, is tied up with being a mental patient.For the recovering alcoholic, it is necessary to identify as such, at least at first, in order to stop drinking and share the message with other alcoholics.But although I am a mental patient, I am first and foremost a writer, a dog owner, a 48-year-old woman living on the fifth floor, and so on.It is essential, and I repeat, essential, that a person with a mental illness refrain from letting the illness identify herself.Because if she does, others will identify her by the illness; they will discriminate and stigmatize.
In 1985, when I was living in a small town in Vermont, I made such an identity mistake.Others saw me as a medicated entity, with side effects, hands that shook, arms with scars, suicidal and unstable, someone to be avoided.I wasn’t even considered human.I was the illness.Nobody wanted to be around me except those that felt sorry for me, and that never lasted long.Like Bertha in Bronte’s Jane Eyre, I was filthy, contemptible, despicable.I might as well have been an animal.
But because I’m not Bertha, because I am not my illness, I have chosen to re-word the intro on my home page.Subtleties, tiny differences in shading, can make a huge difference.I am a person with an illness.Yes, the illness is important in my life, and I admit, sadly, it is the biggest guiding factor in my life, but is that such a bad thing?Look at what guides others and you’ll see what I mean: people are driven by money, drugs and alcohol, rat-race jobs, greed, and mostly sex.
In 1986 I got fed up with the lack of available mental health services in Vermont and decided to move to Massachusetts.But was that the real reason?I think I had no choice but to move, because I had backed myself into a corner, a lonely corner of stigma and discrimination, a one-way mental patient trap I’d put myself in and couldn’t escape.It was too late to go back and there was no place to run.I was caught naked in the spotlight.In comes Deus ex Machina, my parents, who whisked me away to Massachusetts just as the jaws were about to close upon me.
Identity as patient comes in subtler forms.That’s one of the reasons I won’t attend a day program or overly frequent therapy sessions.Sadly, it keeps me from having close friends who attend day programs, whose lives center around their treatment, or whose identity is wrapped up in their illness–I can’t stoop to their level anymore.I refuse to have conversations in public with people I knew in day programs or hospitals about our experiences.I have changed my seat on buses on more than one occasion in order to avoid such conversations.
Isn’t identity defined by who, where, and what we are at the moment?As I sit here in the library I come to understand my identity as library patron, as writer, as student, as blogger.Nothing mental here.Within an hour I’ll head home and reassert my identity as fifth floor resident and dog mama.Hopefully, I’ll survive the day just fine, and when it is done, rest my head and become a dreamer.
Here’s Dunkin’ Donuts where Joe and I used to hang out!
As you can see, the place is busy. I was always afraid that the workers there were talking about me in Portuguese. Once, a worker Joe and I referred to as “Honey” asked me, “Why you get so fat?” and I was so shocked that I told Joe I didn’t want to come here anymore. Eventually, we went back. I went in there once and told them Joe had died. They whispered among themselves. After that, I didn’t go in at all. I saw Honey at the bus stop the other day and pretended I didn’t recognize her.
Here’s an essay I wrote in 2002 about Honey:
Writing the Personal Essay
We were supposed to go to the ball game, but instead, we’re parked in a rain-soaked Dunkin’ Donuts parking lot, in front of the dumpster with landscaped bushes on one side and the auto upholstery place on the other.Some of the regulars have set up lawn chairs under the eaves, while DD’s windows steam up and business slows.Joe hands me a five and says, “The usual for me.Get what you want.Be careful, the pavement’s slippery.”He puts on his favorite Pink Floyd tape, one I copied for him from my own collection that I’m getting sick of hearing.Whenever he listens to Pink Floyd, it means he’s depressed.
I nod to Joe, hop out and cross the parking lot to the entrance, waving to the fifty-ish retirees who’ve set up camp here.One of them gets up and holds the door for me.I notice his keys, hanging from his belt look, include an off-white rabbit’s foot.Inside, Luis mops the floor and Dalva says something to him in Portuguese while coffee grinds and drips forever.
“Uh, the usual for my boyfriend.”I try to smile.“And for me, a small coffee.Doesn’t have to be decaf this time.”
“What decaf?Creme?Acucar?”Fabiana smiles at me.
“No.Regular.You know.Normal. Black.”
The worker we call “Honey,” for lack of a real name (we’ve never asked her) says to me, “How’s you boyfriend?Say hi to him for me.”
“When you getting married?”
I choose to ignore this question.“How are you?” I ask Honey, as she pours iced decaf from a spigot into Joe’s quart-sized plastic cup, snaps on the lid, then turns to me.
“Oh, okay,” she replies.She empties a cafeteira hastily.“Going home soon.Leite?With milk, right?.”
Pink Floyd’s “Us and Them” is playing in my head no matter how hard I try to get rid of it.“Maria have her baby yet?” I ask.
“Not yet, not yet.Wait.”
Outside, the rain crescendos, washing away cut grass and leaking motor oil, fractured hopes and half-forgotten dreams, while the sky empties its frustrations.I wave to the regulars again.
Back in the van, Joe has decided to put the heat on, but I ask him to shut it off because I’m having another hot flash.“I think they’ve canceled the game,” he says to me.
“Yeah.Rain’s pretty bad.Muddy field.”
“Naw, they put a tarp on it.”
“The whole field?How can they–”
Joe turns up the tape.And who knows which is which, and who is who….
A siren sounds nearby, and Joe and I turn to see where it’s headed.“Down near my place,” I say, guessing.“Someone fell and can’t get up.”
“Yeah, sure.”Joe pops the tape out and tunes in A.M. radio.Sporting News Flash — the Red Sox lose again last night….Joe presses a few buttons and gets a music station. “Hey, Honey!” he calls out.
Honey slides toward her car, holding a magazine over her head to protect herself from the rain.She waves back, shouting, “Hi Honey!”
“Yeah, yeah.”She hops into her old Buick and starts the engine.It chugs for a second, then Honey pulls out of the parking lot and disappears into traffic.
A song by the late Harry Chapin comes on.Joe turns it down.“Too depressing,” he says.
“Where–where do you suppose she lives?” I ask.
“Dunno.Who, Honey?Round here, I guess.”
“Is she married?”
“Let’s go out to eat.”
“I’m not hungry.”
The regulars pick up their lawn chairs and head for their trucks.I notice a sizable tattoo on one guy’s arm.Another has a beard that hasn’t been trimmed for months.“Tomorrow,” the guys say to each other, crushing their cigarettes on the sidewalk.
I imagine, for a time, that I’m Honey, that I’m going home, maybe to wait for the criancas to come home from school.Or maybe she doesn’t have any.Maybe she comes home to an empty, run-down apartment near the Stop & Shop somewhere, sits at a chipped formica table, listening to news of home, on the radio portuguesa.Maybe she’s eating a few of the dozen rosquinhas she brought home, dreaming of a better life, a marido who loves her, a TV that works.
I needed one more fare…to make my night…ooh, ooh
Or maybe Honey is listening to an orquestra brasileira, taking the sound into her heart, letting it hop into her arms and breasts.Maybe the musica electrifies her entire body, and she moves her soul around in her small kitchen, the linoleum coming up in the corners, flies buzzing around a naked light bulb, while she dances, dances, dances.
I thought I’d take a photo of these sunflowers before they became too wilted. I walk past them every day just about.
Once, QB and I were walking down this very same street when QB got mad at a truck. So he decapitated a flower. Thankfully, the owner of the flowers wasn’t around. I thought it was damned funny. Needless to say, we got out of there in a hurry.
Today, we were walking past a car and he grabbed a fender piece that was falling off anyway, and pulled on it. I don’t think he did any damage. Oh shit, I sure do love my dog.
Welcome to Metro Mini-Mart, home of Entenmann’s Chocolate Chip Cookies, Brigham’s Ice Cream in all flavors, all kinds of soda (you may call it “tonic” or “pop” or “coke”), Snickers Pop ’ems, cigarettes of all types, Giant Hershey’s bars including those with or without almonds, Giant Nestle’s Crunch, Giant Symphony bar (both with and without toffee, Cadbury Fruit ‘n Nut, King Size Reese’s, 5 oz bag of Twizzlers, Sun Chips, Potato Chips, Pop Tarts, Aunt Jamima Pancake Mix, free matches to light your cigarettes, Breyer’s Ice Cream, Doritos, Entenmann’s Cheese Danish, cigarette lighters, Entenmann’s chocolate cake, scratch tickets, milk, chocolate milk, Betty Crocker Brownie Mix, Betty Crocker Chocolate Frosting, M&M’s, The Boston Globe, and nail clippers.
I think I”ll pass on The Boston Globe. The news is just too depressing.