To give you an idea of how bad it gets, I'm sitting here seething now because we're out of toilet paper. It’s these small things and how big they become, it’s the fact that it is such a small thing that has become so big, that makes it an even bigger deal that it’s not working right.
It’s not just a small inconvenience for me to run out of toilet paper. I have the runs every morning. I’ve had diarrhea three or four times every morning for the past three years. So when I run out of TP it means I have to deal with cleaning it all up in creative ways.
Not just that.
Once the door for anger is open in my brain, the rest of the mess is able to pour in, so before I’ve even gotten out of the bathroom I'm running the whole scenario over and over again in my head. It’s bad enough I have to still be working when I have diarrhea three or four times every morning, and have for
Three years every morning ,
And still can’t get a doctor to even talk to me about it.
The guy at the Free Clinic just shrugs and says, oh yeah, Irritable Bowel Syndroome, people with Fibromyalgia often have irritable bowels. Then he recommends over the counter diarrhea medicine that says right on the label, if stomach problems persist see a doctor. . . .
Bad enough that fibromyalgia probably isn’t even really an illness, it’s just a way for doctors to shrug off a variety of unrelated symptoms when the patient in their office doesn't have health insurance.
It’s it’s not just that I ran out of Toilet Paper it’s how that plays into the scenario of everything that is wrong with the world and me today. It’s, I can’t walk all the way to Normandie or Western from here because of the pain in my legs, but at Four in the morning that's the closest place to go. All the neighborhood stores are gated shut, their proprietors sleeping soundly in some nicer part of town.
Even if I could walk, I wouldn't want to go to either corner this time of night, as since I’ve been losing weight and looking better, the johns have been mistaking me for one of the prostitutes, a problem I never had at all the three years I was living here when my stomach stuck out farther than my chest.
Thanks to being so sick, I'm finally losing weight. . . they say, watch what you pray for.
Okay, so I run the whole scenario over and over again in my head: I shouldn't even be getting up to go to work when I'm this sick, and if I was working in an office or studio, someone would notice how sick I am, but since I'm working at home because I'm sick no one can see how sick I am so I can’t document it and get on Disability and finally stop working. If I had a doctor who was seeing me regularly and not just one of a blur of hundreds of poor people who file in and out of his clinic every day, if I had a doctor paying attention to me, I’d have had forms filled out a long time ago and I’d finally have a disability check coming every month and I would not have to continue working this job full time, just part time, and I probly would end up not being as sick. . . .
But one thing causes another and another and another.
If you think it’s easy to live with this, it’s not. I practice Yoga, I'm a journalist who has researched and written about mental health self help. I know a hundred and one ways to relax.
Still this scenario runs through my head. I can’t get disability because I don't have a doctor, I can’t get a doctor because I don't have disability. I have to live near the studios to work, because I have to be close enough for the studios to deliver work to me, but I can’t afford the rent near the studios, so I have to settle for a slum. I shouldn't have to work this hard when I'm a sick old lady. I shouldn't have to work in a slum on broken down equipment - a table held together with duct tape - when I work for national television and cable networks.
But that's the way it is.
My legs sometimes won’t lift off the floor. So I’ll get up to walk, take a step like a normal person, but the foot won’t leave the floor. Still I’m already gaining momentum moving forward, I don't expect my foot to be stuck on the floor. So instead I kick over or knock over or trip over anything that is on the floor, including the carpet, because I'm all thrown off from my foot not leaving the floor.
No one sees this. I can write these descriptions down all day in an application for disability benefits, they won’t acknowledge anything unless my doctor documents it. So since I don't have a doctor they send me to one of theirs.
This is where it gets even more personal and pissy.
Doctors who write about fibromyalgia and PTSD and these weird body pain “syndromes” insist the physical conditions are related to mental conditions. But every psychiatrist I’ve seen in ten years says I don’t have any mental illness. So the GP says since I don't have a mental illness, I must not have fibromyalgia, but I have all the symptoms of fibromyalgia (which is what doctors call just about any symptoms), so I must have a mental illness. When I had health insurance a few years ago, I used to bounce back and forth between psychiatrist and rheumatologist as each passed me back to the other, when they couldn't figure out what was wrong with me themselves. So in a way maybe I'm better off just not seeing any doctor at all, as I really am tired of reading waiting room magazines.
Social Security is different. Since people who have no idea what fibromyalgia is are convinced it is caused by some defect in the brain, Social Security sends me to see a psychiatrist to see if I qualify for benefits.
They schedule me to see their psychiatry one day, and a doctor the next day, both appointments at the end of a long bus ride -
Down Sunset Boulevard, ironically enough, so it even fits into this story.
I'm a sixty year old woman, trying to get social security benefits a few years early because I'm sick, but since I have no doctor, I have no way to prove I'm sick, so the Social Security people send me to doctors they have on contract.
First day I see the shrink. He is this black guy with missing teeth, so I think, wow, a medical doctor who looks like a home boy, and I open up to him, actually I'm usually in the middle of a bad PTSD episode, and I am that week anyway, so it’s great to finally have a shrink to talk to. But how do I summarize this whole complicated connection between being raped by a priest when I was a little girl, growing up with the after effects all over me, and as a result being the weirdest person on Earth most of my life, plus a slut, so people never liked me.
That's all they seem to hear, the slut stuff. Oh, and wait.
Okay, this shrink, I'm thinking he’s sympathetic and understanding - I mean almost everyone who goes through the court system on the pedophile priest issue gets a huge settlement because of the same kind of symptoms I'm suffering now, this terminal obliqueness, the inability to stop crying, the fear of everyone.- Some call it a trust issue, the truth is I'm scared shitless of almost every human on earth - all this stuff- the misdirected anger where running out of toilet paper is a reason for me to scream for twenty minutes.
The Social Security psychiatrist interrupts me when I'm in the middle of all this passion and asks, do you use medical marijuana.
Are you using medical marijuana?
Well he’s a guy from the ghetto, it’s cool, I think, so I say, yes, in fact I had to smoke some before this appointment to stop the panic attack I was having, so I could get here.
And the interview ends. The appointment was over. He did this kind of slap of his hand on the table, he’d been leaning back in the chair, and now that I’d answered yes, I use medical marijuana, he shifted his weight back forward and started to make closure movements.
I no longer had any credibility to him. I'm just some stoner trying to live off the state so I can sit around smoking weed all day, is the look I see on his face.
Okay. The weirder thing happened the next day when I had an appointment early in the morning at the same clinic, only this time with the doctor whose clinic it was, this Chinese guy.
He wasn’t born in China, he looked and sounded American born, but he was definitely not American culture. Not someone who would understand an old hippie.
The worst part about it was, no one was in the clinic that morning. I arrive for my appointment and find out the Chinese doctor has sent the receptionist and the nurse both out to run errands, so I'm to be examined, physically, by this strange man, in a clinic that looks more like a telemarketing office and the gray traffic of Sunset Boulevard east of Echo Park going by outside.
He wants me to sit on his little examination cot and take off my clothes while he waits outside the door, and then he’s going to come in and examine me when there is no one else in the office.
I'm shaky still from yesterday, and weirdest thing, when I have a passion session, like I’d had the day before, where I pour everything out and cry buckets, I'm always pain free for a few days afterwards. It’s like I'm wearing a Valium patch or something, the end result from all that passion is a flush of endorphins.
So there really is nothing this Chinese man is going to see by examining me this day.
Still, I'm sitting there with nothing on but a little robe that does not close, and here is this chubby Chinese man with acne in front of me with this little mallet from a 1949 style medical practice. He hits my knee with the mallet and I kneejerk up wild, and my leg hits him in the face.
That's it. I won’t let him do another thing. I jump off the table clutching the robe closed. I say, You have to stop now, just please leave, let me get dressed.
Let me get dressed, I say louder. I hear the outside door open, the receptionist is back with his breakfast and she runs immediately into the room like she was trying to get back as fast as she can, so she can stop whatever horrible thing is going on before it gets too horrible.
She comes in just as I'm insisting the doctor leave the room, I don't want to be examined.
Shit, I got out of there so fast. Sure didn't look like a crippled old lady. . .
So of course the report back to Social Security is that I'm perfectly healthy, just a marijuana smoker who was uncooperative and refused to be examined, and I get turned down for disability benefits.
So I have to get up at 4:30 in the morning every day, roll out of bed to my computer, and do a job that pays the same as it paid in 1998 when I started doing it, only it’s harder to do now thanks to technology. (I've had to figure out a way to do the work faster and faster, to make up for no raises since 1998.)
One thing causes another and if something exterior doesn't break the cycle to intervene and change the course, the cycle can’t really do anything but keep bouncing back and forth between obstacles, never getting past them.