This is my rage, controlled. No, really. If it were not controlled, you would have heard on the news by now about several violent assaults on doctors in this area. But it hasn\’t happened. And it won\’t, because I like to think I\’m above that. But I really think that it should.
This is my letter of resignation. My pink slip to the world. I am not quitting, I am firing. All of you, everybody, you are all fired. Doctors, nurses, interns, health insurance agents, managed care organizers, Health and Human services officials, caseworkers, social workers — fired, fired, and fired.
Like the best of all letters, this one is not going to get sent. The most bittersweet words are never told to the ones we think deserve them the most, because it is not nice, and if I am anything other than angry, I am nice, and perhaps that is my greatest fault of all.
January 1995. I am thirteen. It is a warm weekday, I think a Monday, and I am at school. I am standing outside waiting for my school bus to take me home. I have taken off my black leather Lou Reed jacket that I fought with my parents about when I was eleven in order to obtain. I have tossed the jacket into a corner along the concrete walkway to keep it out of the way of all the students who are also waiting for their busses to arrive from the other nearby middle school.
This particular day I do not have my backpack with me, as I am in so much pain that I cannot lift the damn thing out of my locker. For once in my straight A plusses honor roll life, I do not care that I am not going to be able to get my homework done. I am in so much pain that I can barely stand up. I am grasping my left side at my hipbone and am gasping for breath. My face is scrunched up in attempt to keep the tears from overflowing. I will not let them see me cry. No. I do not know what is going on — menstrual pain, maybe? — but it is bad. I just want to get home. I need to get home.
My bus finally arrives. I heave myself off the brick wall and clamber onto it. The other kids are staring at me — not in that \”oh god, I think they are looking at me\” sort of social phobic way, but really staring at me. Several ask what is wrong. \”Cramps,\” I gasp, glad to finally be on the bus and trying to not think about the 45 minute rough bus ride and ten minute walk home that I now have to look forward to…
The daily afternoon commute is finally over. I am walking through the front door of my family\’s suburban sprawl house (with a basement, but not an upper second floor) — and my dog frantically comes up to me and starts trying to lick me. She is howling. She has not acted like this since I was seven, the day I caught my left hand ring finger in the top of a wooden six foot fence, and hung there with my seven year old body weight dragging me down further into the wood, until my next door neighbors grabbed me and my mother freed me with the help of vegetable oil. My dog, still a puppy then, was the one who alerted the adults that something was wrong, as it was quite normal for me to be screaming at the top of my lungs while playing in the backyard. I am a boisterous tomboy, and I always play rough. When I was ten I walked on a broken ankle for the three days prior to being able to see a doctor and get a cast. I have a high pain tolerance, but not for this — this pain in my side is more than I can possibly bear. What the hell is this? Mom? What is it? Make it stop!
My mom emerges from the kitchen to see me crying and leaning against the wall by the stairs. She calls the dog off and escorts me to the plaid couch in the living room — the one that looks exactly like the one in the first eight or so years of Roseanne, straight down to the ugly black-and-print Afghan hanging on the back of it. My mom asks what hurts, where, for how long, etc. I do not know how to answer. I cannot pinpoint where it hurts, just that it is in my left side, in the back but mostly in the front. I cannot pinpoint when it started, or what might have caused it. My period is due next week, so my mother gives me Midol and a hot pad, but the pain does not subside.
I am taken to the hospital, where they run numerous tests on me: X-rays, blood tests, and finally, a pelvic sonogram. I denied ever having had sex, so they give me an internal sonogram. The green conducting gel slimes me all over my stomach, down my legs, and across my extensively furry pubic region. It dribbles down the crack of my ass. A female doctor is spreading me open and sliding a probe inside of me. The probe puts images of my insides up onto the nearby screen. I did not even realize that there was an actual hole there! And god, you can fit that entire thing up inside? Jesus Christ! It is cold! It is huge! It fucking hurts! I am never going to have sex, ever! No way!
After the doctor removes the probe, my girl bits start to cramp up. The doctor leaves me alone to get dressed in private. A bit of blood is on the paper below me. My period has started early; my side still feels like a shark has bitten it, and now my genitals feel like they have been pulverized with a jackhammer. I thought this was supposed to help?
Once I am dressed I walk out of the room to meet my mother. Only then do I notice that there is a sign on the wall outside the door that points down the hallway. The sign reads \”Morgue.\” I relay some sort of stunning thirteen-year-old witticism to my mother about how I feel like they are turning me into a corpse and they should just put me in the morgue now and get it over with. My mother, who has already adapted to the brattiness of teenagers, attempts to ignore the comment. Instead, she asks me what happened to my leather jacket, as it is supposed to get cold again soon. Only at this point do I realize that I am in so much pain that I left my beloved jacket on the ground by the wall, completely forgotten.
A few days later, after strict bed rest, I return to school and check the lost and found. No jacket, of course. Stolen, most likely by the resident hoods. I argued for four months to get that jacket, and an hour of pain made it go away. My parents, who decide that I am too irresponsible to have such a thing, will not, of course, replace it. I decide that from here on out, it will be mind over matter. I will not fuck up anything else because of my body, whatever may be going on with it.
Despite all the tests that were run, the doctors had no idea what was happening. They decided it was menstrual pain. Then they decided I had a uterine \’problem.\’ After that, it was a severe yeast and bacterial blood infection that had apparently been persisting, unrealized, in my system since I had pneumonia that past September. They gave me antibiotics, and they said the infections would clear up.
It is now 2004. I have had those same yeast and bacterial blood infections ever since then — September of 1994 — in fact, whenever they run the tests, there is evidence of the infections in my blood and urine. Antibiotics decrease the amount found, but they never make it go away entirely. In the past ten years, I have been diagnosed with a variety of things. Some are treated and then \”clear up,\” even though I continue to experience the same symptoms. Other diagnoses are given and then changed or entirely thrown out the window by other doctors, sometimes even the same doctor as the one who made the diagnosis in the first place. I have received various treatments for symptoms, but none for causes. Whatever it is, it persists.
The mysterious pain in my side has never gone away, either, and instead, has grown much worse over the past years. It has spread from the top of my pelvic bone into my ass and up my back. I have strange numbness, pain, and tingling in all my limbs. Occasionally the entire left side of the lower quadrant of my body, from the labia majora on out and down, falls completely asleep. Then I have pins and needles from my labs down into my toes.
Most other times, I have no sensation in my labia majora at all, and I have never had any in my labia minora that I can recall. When pressure is applied to my pelvic bone, particularly on the left side, I feel pain directly beneath the point of pressure and sometimes down my leg and across my back. In the past year it has even become extremely painful to have intercourse. I have never had an orgasm without much struggle, and now I can rarely have them at all. It is not just due to pain, but because, for whatever reasons, my genitals are just too numb and cannot be stimulated as much as needed.
In the past two years or so, I have started having other problems. When my body feels a sudden change in the environmental temperature, it notices and alerts me. It happens when I get out of the pool and the shower, when I get out of my heated car in the winter and my air conditioned car in the summer. When I enter a room that has a fifteen-degree or more temperature difference from the room I was in prior, the same thing. Ditto when a cold wind blows, when the air conditioning suddenly kicks in, when a fan is blown directly on me, or when my feet get wet in the rain or snow. It even sometimes happens when I consume cold beverages or frozen food, and it often happens while my body is cooling down in bed at night. A sudden leakage problem, out of nowhere, comes gushing out into my pants. That would be piss, you fuckers. PISS.
I am twenty two now, and am pissing myself like my eighty year old nearly comatose grandmother, because you, the medical system, FUCKED UP. That is correct, YOU, the educated ones, the smart ones, the ones who were supposed to help — you didn\’t. Maybe you tried. Maybe you really did. Maybe you cared. But it didn\’t work, and it turns out that for TEN YEARS, every single one of you were WRONG, because you did not run ONE test. ONE FUCKING TEST. The only goddamn test that was needed, and with all the tests you did run and the hundreds of thousands of dollars of medical bills I have incurred over the past ten years, and NONE of you dozens of doctors ran it.
Just one little X-ray or MRI series was all it took, but for some reason it took ten full years for any doctor to decide that I needed one done on my lower spine. My spine, you fucknuts. Not my skull. Not my uterus. Not my blood. My spine. And what before my orthopedist\’s eyes did appear, but three degenerating discs, all of them clear.
First, you tell me it is normal to feel like this. Then you tell me I am lying. Next, you told me I was just lazy, or that I was looking for attention. Then there was something in my blood, or something in my uterus had gone wrong. Oh, and that persistent infection. Then I was a hypochondriac, a victim of reoccurring sexual abuse, and then oppositionally defiant. Not to mention being a fuck up, sick in the head, and a bad influence. Later, it was carpal tunnel syndrome and tendonitis, then it was arthritis. Oops, strike all that, it was just fibromylagia and chronic fatigue syndrome. But it really seems like multiple sclerosis. Oh, no, it\’s all just side effects from the medicine. Wait, wait, no, none of that — transverse myelitis. Sorry, wrong again, none of that, strike it, it was all wrong. Parenthesia! Sensory integration disorder! Multiple Chemical and environmental Sensitivity disorder! No, that can\’t be right… maybe you were just abducted by aliens? Or have absorbed too much bad karma over the years and have been unable to \”unsponge\” and let it go?
Let us not speak just now of emotional damages. Not just those caused to me, but to my family, when they cry and say they wish things were different. Or to my lovers, all of whom have become frustrated with my health and the ways with which I have tried to deal with it, all eventually leaving me. Or all my friends, most of whom I have managed to anger or alienate with my seeming inability to control the ups and downs. Let us speak of none of the stress and the personal relationship havocs it has caused. Let us instead speak of monetary outcomes.
From time of onset/injury, I never managed to complete a full five-day school week due to being too ill, tired, or in pain. I went from being a straight-A student to a D and F student within a year. I went from honor roll in the gifted and talented classes and full acceptance into an international baccalaureate program and an accelerated communication arts program into remedial classes at a half-day schedule because I was unable to attend a full day. I could not keep up with even the remedial classes and was kicked out of several schools, including the public school system. Faced with being sent to a school for juvenile offenders (the only option available in the public school system once getting kicked out) or dropping out of school after sophomore year, I chose the latter. I tried many times over the course of two years to obtain my GED, but it was not until the summer of 1998 that I was healthy enough to sit through the session. I was the first one finished with the exam and scored within the national 99th percentile in all five subjects. Nothing is wrong with my brain — I am still a smart cookie. Hidden under all the bullshit you have buried me under, the GT honor roll kid is still in there somewhere.
16 and a high school drop out. I tried to go to community college — not once, but six times — and every time I had too many health problems to complete a semester. I tried working instead. Eight different jobs in four years, all of which I had to leave — not fired from or asked to leave, but had to quit due to health problems. I do not have the stamina to make it through the day, even when I work or go to school part time. The only time that I do not end up bedridden at the end of every day is when I have not had to physically exert myself, and even trying to hold a book for a couple of hours ends up fucking up my back.
I have spent the past few years doing a boatload of nothing as a result — nothing except go to different doctors according to your orders, to receive different medications, treatments, and diagnoses that do not help. Since succumbing to the doctor-go-round, the science of modern medicine has absorbed nearly all of my time and energy. I have not a penny to my name and instead have debt. I have been unable to socialize and have lost most of my friends. I have no career, no job, and no education, and am unable to acquire any of them. My parents assumed responsibility as my caretakers, got fed up with it, and cut it off. I was homeless until the decision was made between my boyfriend and I to live with him; now he is my caretaker and he resents it and me for it. I cannot get the majority of my own meals, park my own car, run my own errands, or sometimes even bathe myself without assistance because I am too weak, too dizzy, or in too much pain. As the government provides my healthcare and they dictate that I may not receive my healthcare unless I continue to be in therapy because I am depressed, I am stuck in therapy — sessions where I have nothing to talk about except my health because that is the only thing that can possibly be bothering me anymore because that is the only thing that my life consists of anymore.
You tell me that there is nothing wrong with me and that it is just \”adolescence,\” then you tell me it is all in my head and that I am being a pain in the ass. Then you say it is actually something physical and you charge me hundreds of thousands of dollars to correct it, only to retract everything you have said is wrong. You suggest other diagnoses, many of which are essentially untreatable, irreversible, DEGENERATIVE, pain disorders, but you cannot decide because there are no complete tests available to science to actually diagnose those conditions — to arrive at that conclusion, doctors just eliminate all the other potential problems. However, you eliminated the others and then left me with the option of two conditions, both of which would one day leave me drooling on myself in a wheelchair after years of pain, and neither of which are treatable. And you expect me to NOT be depressed? To not be anxious? After losing my entire life and pretty much everything I have ever cared about, you tell me that the future is looking pretty bad, too, but I should not be upset? DON\’T be UPSET because we think you have one of two things that will put you in a WHEELCHAIR because you will not be able to walk anymore and eventually, after a lot of pain, your brain will degenerate like your legs and you will no longer be able to move or feel anything other than PAIN? And I shouldn\’t be upset, because look at how brightly and cheerily you have painted my future?
Fuck you. I cannot say that loud enough, bold enough, strong enough. There is not HTML equivalent to this emotion. No capitalization, strength of boldness, or size of font can express how very much I mean it when I say to you, ever so gently but with all the rage that ten years of a snuffed out bright light will cause, f to the u to the c to the k, y-o-u, baby.
Had this been discovered anywhere between now and then, who knows what my life would be like? Such a simple thing: one little test, one little scan of my back. Who knows how much suffering — of myself and others — could have been prevented if this ad been caught sooner?
But there is no need to despair any longer. It turns out that I do not have an untreatable, crippling disease. Yes, I have a degenerative disorder, but guess what? This one is completely treatable. Had it been discovered years ago, the right medications and a little physical therapy could have brought it to an end. Maybe I would have needed physical therapy off and on for the rest of my life, combined with NSAIDs, but doubtful. Up until two years ago, that probably would also have been the case, but two years ago you started me on a physically demanding \”rehabilitative physical therapy\” regimen that targeted the wrong areas, and as a result, severely stressed my discs and made them worse. Had it been caught then, I probably could have gotten away with intensive short-term chiropracty and with occasional return visits if I had flare ups. But it is too late for that now.
Now the degeneration has grown more severe and I have developed severe sciatica on top of it. I have severe and irreversible nerve damage. No matter what, I will never be fully sexually functional again. But there is hope. If something is done now, I will not end up in a wheelchair (at least from this), and almost all the pain will go away. If I take good care of myself, I will most likely have few relapses. I will even be able to lead a \”normal\” life — treatment should stop and reverse things enough to allow me to be physically functional. I will be able to get a job, go back to school, even walk my parent\’s rambunctious new dog — three things I have not been able to do in the slightest. In other words, I can still have a relatively pain-free, independent, healthy future. Imagine that. Please imagine it, because for years, I have been unable to, because of all the circles you have had me running in. Needless, painful, time consuming circles to which I have lost half of the life I have lived so far. The formative years. Note: formative. So is it any wonder that I have been depressed, frustrated, or angry? You tell me. How would you feel?
Angry? Frustrated? Bitter? Damn straight I am. But I\’ll get over it. I always do. And I will have plenty of time to do so while recovering from the BACK SURGERY I must now have because you skipped out on proper treatment for so long. Goddamn motherfuckers. I would love the satisfaction of ripping out your own lower lumbar discs, fusing some together while replacing others with gels or metals, and sticking a sensor into your spine to regulate your nerves for you because your own nervous systems can no longer do it. Believe me, I would love to, but I can\’t. I\’m going to be too busy having the above done to me as a result of your foolishness and carelessness, and then I will be too busy getting my life back together and moving on. In the meantime, don\’t turn your back to me in a dark alley, because really — I would love to.
