by Frances Grote

1st Place Winner, 2008 Essay Competition

It is 5:30 AM.  We are racing south on Route 1 toward Philly, averaging 60 miles an hour. I speed up at yellow lights.  I could stop if I wanted to.  I just don’t feel like it.  I am in control.

Pink Floyd, The Wall is roaring from the speakers.  I play it as loud as I can, all the time. I don’t sleep much anymore.  And did I mention I am happy?  Very, very happy.  Wait.  Happy is not good enough.  Elated.  Ecstatic.  Chock full of glee.  Sharp, sharp glee.  Only nobody else gets it.  My daughter, for instance, teetering on the cusp of early adolescence, tracks me from a distance with a stare as intense as a laser beam.  When I demand to know what her problem is, she accuses me of being mad. Years later, when she is a writer, it will finally dawn on me her choice of words was not merely childish vernacular.

I need to be on time for my surgery.  That’s why I’m driving. We were late getting out of the house. I couldn’t remember where I left the keys. Or my glasses. If I let my husband drive, he would go too slow. I look to my right.  He is curled up against the passenger door in a fetal crouch, staring straight ahead.  What is his problem? I wonder, annoyed.

Does a “tumor” officially start the moment that first malevolent seed fools the body’s vast network of defensive resources?  Or is a collection of wayward cells not a Tumor until your feet swell up like baseball mitts and muscle wasting makes your arms and legs so spindly you resemble an avocado pit supported by toothpicks? Is it a Tumor when you’re still not diagnosed after you give up brushing your hair because the gentlest strokes leave bald spots and your brush looks like a mohair sweater?  Who cares if it’s a Tumor when you bleed through your clothing every time some stranger bumps into you? 

I know something is very, very wrong.  I just can’t prove it. I belong to an HMO. My coverage offers a pleasant pediatrician, affordable prescriptions, good maternity care. And a very literal interpretation of health insurance. Diagnosis and treatment of serious illness are outside the system’s standard functions, which are designed to manage costs, not illness. Expensively unhealthy people don’t fit in. I don’t know this until I become one. Doctor visits are only allowed once a month. Corporate exceptions are required to see a specialist. Given an alternative, most seriously ill people choose to switch. I have no alternatives, except for wishing my body’s means of taking care of itself were as efficient as the HMO’s.

***

How have I become the victim of substandard healthcare?  I am insured.  I am a professional in the pharmaceutical industry.  I know how the system works.  In the end, all this guarantees only that I will know, with painful and helpless certainty, when things being done to me, about me, over my head and behind my back have, if not the outright intent, then certainly the full force and effect of doing me harm.

***

After months of fighting to get help while I watch myself disintegrate, I am finally “capitated” to a specialist, an endocrinologist.  The HMO contracts with him to treat me, for less than market rate. Later, when I can finally laugh about some of this, a doctor friend will joke that all endocrinologists, thanks to their rigorous training, become psychotic.  I suspect the one who works for my HMO didn’t need medical school to get that way.  Stacked against his office walls, in every corner of the examining room, sliding off his receptionist’s desk are stuffed folders, unopened mail, paper leaking out of piles like sap from violated trees.  If I were visiting him on behalf of my employer, I would not allow him to do research on our drugs.  Now my life is in his hands.

This doctor moves like a whirlwind, chases his thoughts around like a butterfly in a field of coneflowers. At our first visit I start by describing my most obvious symptom, the inexplicable weight gain. He listens a little bit, then demands that I tell the truth, admit I am a glutton, a gorger, a closet eater, for how else could I be gaining over ten pounds a month?  I insist I have been living on a handful of Cheerios in the morning and nothing but black coffee for the rest of the day. He tells me I am a liar. I begin to cry. He writes me a prescription for vitamins, and says next time, if I am ready to face my problems, maybe we will do some blood work. Only after he leaves the room do I understand he’s serious.  I have to wait weeks for my next appointment. Symptoms continue to accumulate. At my second visit, I describe fantasies of opulent indulgence, stories about all the things I have been craving to the point of obsession while depriving myself into malnutrition in my efforts not to gain weight. He is pleased, and rewards me by ordering some tests. Here is the worst part. I don’t blame him for treating me this way. I despise me too. I have become a repulsive creature, my jaw buried in the ruff of my neck, my eyes beady slits. People stare at me with open distaste. And it’s not just appearances. I can’t walk upstairs without pausing to catch my breath. I can’t lift a bag of groceries, or remember what the sentence I am reading is about by the time I get to its end. I am ready to accept anything this man does. I want to be well.

We do a few tests each month. While we wait for results, I develop high blood pressure, diabetes. Finally he announces that I have Cushing’s. All these things are happening to me because my body is producing too much adrenaline. Then he tells me he is very excited. He has never had a chance to treat Cushing’s before. He doesn’t offer the option of referring me to somebody who has treated Cushing’s before. He tells me he will begin my treatment by “sucking some tissue” out of my brain. He describes how he will insert little vacuums through the arteries in my neck. I envision the creature I will become as he destroys the core of my brain, learning what he shouldn’t have done as he goes. I consider my choices, death by gradual system failure or death by crazy endocrinologist. 

There is a road near my house, a four-lane highway, and in the middle is a huge old tree, as wide and solid as a small truck, left there by someone with a quirky sense of aesthetics. If I come at the right time of day, I can start a mile back, run my car’s engine flat out and hit that tree, head-on. I make my plans. On the way, I do something I didn’t expect. I stop at a pay phone on a noisy street corner and call an old friend who has not seen me in a long time. In his mind’s eye I am still beautiful and worth saving. I am crying, screaming, telling him what I plan to do, and why. When I finally stop, he says quietly, “I can’t help you.” His words are as unexpected as a dousing with ice water. I stand mute, sweat and cry. Finally he speaks again. He says it’s time to ask one of the doctors at work for help. I tell him my insurance won’t pay. He says I can’t worry about that, not now. First I must worry about how I will manage to live. Why didn’t I see that myself? Ask Pavlov’s dogs why they slobbered every time they heard that bell.

So I am driving to the hospital to have the tumor removed, the real one on my adrenal gland. It’s bigger than a ripe walnut. Anybody who looked for it would have found it right away. I am happy, because I’m going to be all better. Nobody has told me any different. I still believe in the system, that its default position is to take care of me.

***

There can be total recovery from this kind of tumor, but mine went untreated too long. Two years after surgery, I am “discharged from treatment” a euphemism for ‘this is as good as you’re going to get’. I have finally learned to refuse any judgment but my own. It will be a decade of hard work and nasty setbacks before there is nothing left to give me away but a premature aging of the skin, an occasional slurring of my speech or loss of balance. There’s a big ugly scar on my back, but it only hurts if I twist the wrong way. It’s the one in my mind that’s a constant dull ache.