People Tell Their Stories:
Healing/Illness/Caregiving

Chemical Man   Robert Hilyard

The clock radio comes on at 7:00 AM to tell him to begin his day. Actually, it comes on a little before 7:00, since he sets the clock a little ahead to get a jump on his day (so he won't be late quite so often but he got wise to this ploy years ago and now it is merely habit). Generally, the clock radio comes on with the day's weather forecast. The only part of the forecast he would take any interest in is the air quality assessment but they rarely report this anymore because it worries people. The radio announces another day of sunshine, another day of pleasant but innocuous and essentially characterless Southern California perfection again. The bland background to his day's pilgrimage.
 
He stirs under the flowered coverlet. He would like to stay in bed, just to roll over, change position and go back to sleep. Maybe the radio will play some Schubert and he will feel his T-cells multiplying, becoming stronger and going about their work with a spring in their step...but if he lingers now, he will throw off the balance of the day. It's all about timing.
 
He sits up and reaches for the inhaler on the table by the bedside. The inhaler that opens his lungs so he can breathe the air that has no quality again today. One puff. A deep draw. Hold it. All those years of smoking to look cool were finally paying off. He's got the technique down cold.
 
Two puffs three times a day. But he must leave an interval between the two puffs, say 15 or 20 minutes. The spray makes him jittery, like the worst-ever case of coffee nerves. And who wants the nerves if they can't have the coffee? Coffee and cigarettes. Does he miss them?
 
Who has the time?
 
He's out of bed and at the dresser where he tugs open the bottom drawer. The pharmacy, he calls it, containing his stash of precious relics of five-now--opportunistic infections and two years on the hiv circuit. This group of pills here is his current medications. Funny word, current, especially in some of its applications. "These are my current meds. This is my current lover." As if, perhaps, next season he will be sporting more fashionable models. But he doesn't have a current lover and suspects the current meds will, after all, be more faithful to him.
 
These, then, are the current meds. Those there are the herbs recommended by his acupuncturist/herbalist/Doctor of Chinese Medicine to reintroduce his body to his spirit, and restore the balance inside him so he will be worthy, one day, to participate in the harmony of the universe which he hopes one day to experience first-hand. Those next are the nutritional supplements recommended by the homeopath/nutritionist/chiropractor because he suffers from "poor absorption" and he needs more--more of everything. These others are duplicate meds, sent home with him from the hospital at four times the normal cost. The remainder are the reserves, leftovers that might one day be useful again. There are: pills to help him breathe, pills to make him cough things up, pills to smother his coughing so he can sleep at night, pills to make him sleep when it isn't the coughing keeping him up, pills to mask the itchiness when the combination of other pills causes his skin to erupt in nasty-looking red bumps that no one can identify, pills to smother the nausea from that same combination of pills so he can keep them all down, pills to shield his white blood cells from the ravages of other pills, further pills to ease his withdrawal from former pills. Pills to calm his nerves so he can go about his day and look the world in the eye.
 
Pills enough to kill any presumptuous microbe rash enough to come within spitting distance.
 
There is even a section of pills that he will never take again, pills that didn't work for him but are too expensive to throw out. A constant reminder and a silent reproach, for he has seen his medical record and it never says, "This medication did not work for this patient." It always states, accusingly, "Patient failed drug." Like computers, he figures, modern medicine is incapable of making errors. It is the human in him that has failed.
 
Today his hand lingers over these last. Perhaps he will gather them all together, one day, and take them to his doctor. Maybe someone who can't afford to buy them can use them, will not fail them.
 
But to the task at hand. Here is the little blue plastic pillbox with the 6 sections--one for each day of the week with a rest on Sunday, except that he does not rest on Sunday, and his regimen for the day more than fills the little blue pillbox so he has a second one, in pink, that he keeps at home with the pills for the end of the day, and a third, in white, with a beeper to remind him to take the pills that must be taken apart from meals. The little blue pillbox has "Lucky Pharmacy" printed across the cover. He no longer gives much thought to the "lucky" pharmacy that his insurance company seems to keep in business single-handedly.
 
Thank God for the insurance. But it won't last forever.
 
He reaches first for the Vitamin C. Ten capsules, a gram apiece, taken two at a time throughout the day, with food. Any more than two at a time or a total of ten per day and his body just throws it off anyway. He doesn't mind so much pissing it away, although this gives him a sense of futility, but it is the cramps and the diarrhea he really wants to avoid. So that's ten grams he takes in the course of a day, and still his homeopath/nutritionist/ chiropractor urges him to take more.
 
Next he reaches for the pills that will forestall the fungus from crawling again inside the lining between his brain and his skull that mysterious region the doctor calls the "meninges," with almost lip-smacking satisfaction, as if these were somehow the Bahamas of the body and all the microbes want to go there for a little R and R.
 
It was last winter when the fungus took over the area, multiplied, and tried to squeeze his brain out his nose/ears. He'd suddenly understood then how it could be that people could have headaches so bad they banged their heads against the wall. But every time he got out of bed, he barfed convulsively and never made it to the wall. Janet, who no longer speaks to him, carried him to the hospital.
 
The treatment there had been nearly as lethal as the infection itself. The doctors called it "Shake and Bake." During the course of a 4-hour infusion, his temperature would plummet and his body would be racked with uncontrollable shivering. Just when the nurses got him packed under a mound of blankets so thick and heavy his body didn't dare to shake, his temperature would rebound and soar off in the other direction. He would suddenly break into a full-body sweat and be drenched by the time they got all the blankets off him and still he would be tearing his gown off because it made him warmer than he could stand to be.
 
The only reason he isn't still on this drug, or dead from it, is that the Government only 5 days after they isolated the fungus in his spinal fluid finally granted approval to the little pills he is now shaking into his hand as a "maintenance therapy." Maintenance therapy. That means he will have to take these pills every day for as long as he lives.
 
As long as he lives ...
 
The lifesaving tablets are little pink trapezoids; they look like Flintstones vitamins. They are the driest thing he has ever had to force down his throat, worse even than the time his mother force-fed him Saltines until he choked because he'd whined "Morn, I'm hungry!" one time too many. These babies/dust bombs, he feels sure, would be used to drain swimming pools. He takes two a day, both at the same time.
 
And the doctor can't say why he suffers from dehydration.
 
But he does not take them now. He puts them in the blue pillbox in the section he calls To Be Eaten With Breakfast. He will take them with his morning meal and lots of water.
 
Now he takes up the pills that are to prevent yet another episode of that garland of burning blisters that has come twice to clasp him by the waist more warmly and tenaciously than he's ever been held in his life by parent or lover. He felt a little shame when his doctor explained that these would also prevent occurrences of similar outbreaks in other areas--delicate, formerly sexual parts of his body--and he felt much shame when his doctor overrode his protests by saying, "Well, you might not have noticed when you first picked them up."
 
The pills that keep him so mindful of his shame are the blue ones. Sleek capsules of robin's egg blue. State-of-the-art, high-tech looking. They slide down his throat easily, comfortably. They even have their name and the name of their manufacturer printed right on them in a glossy, black--presumably edible--ink. Black and blue; he won't even think about the implications of this color combination. Sometimes he hopes there is magic in this printed information, for it is his understanding that a virus is not, after all, a living organism, but a free-floating coding of information. And, he thinks, even if the virus can't read, there is a certain logic, or at least symmetry, in fighting information with information.
 
But he doesn't take these now either. He places six of them in the blue pillbox, in three separate sections. Two To Be Eaten With Breakfast. Two To Be Eaten With Lunch. Two To Be Eaten With Dinner. The pink and the blue lie side by side in the breakfast section. Pastelish. Easter Egg Tones. These are, coincidentally, the colors he has picked as his healing colors. The colors of babyhood, the colors of new life. The pink and the blue help him, as well, reflect on the paired opposites of his life. The old conflict of the mascu- line and the feminine elements of his spirit, still unresolved, certainly, but no longer so important to him in the face of: life and death, hope and fear, love and anger, body and soul. He tries to wear the pink or blue, or both, as often as possible. They are his uniform of healing. His signal to the world that he has accepted the challenge and he is doing his best.
 
He passes on to the white pill, small and round, that keeps the bacteria in his blood in check, keeps it from invading his brain--those meninges again!--and bringing back the lesions that used to make him forget where he was going or what he was supposed to do when he got there. It also prevents him from going blind.
 
They only isolated the responsible agent by accident.
 
It started in his right eye. At first it was just a blurred spot swimming in his field of vision, like a traveling smudge on a pastelled canvas. Then the floaters appeared: myriad, tiny, nearly transparent dots everywhere he looked. They didn't bother him much, but he made an appointment with his ophthalmologist anyway. Hoover, before he could see the ophthalmologist. the floaters darkened overnight and he didn't notice until the next day as he was driving to visit the hypnotherapist who helps him relax his grip on the darker truths of his life and helps him look in all the odd corners for where he's stashed the happier ones. Suddenly, the morning sky was crowded with black stars and galaxies, and he knew something was really wrong.
 
At least it was only in one eye.
 
After that, the light seemed to go out of the world even as it began to close in on itself and grow smaller and smaller, and at the same time somehow ever more distant. The objects around him grew less distinct and even disturbingly distorted. As his vision grew dimmer and dimmer, more and more often he found himself closing his bad eye or turning his head further and further over his shoulder, trying to see what was in the world around him. He began to leave his apartment less and less often, and avoided crowds altogether because he was always walking into people. He worried about how much longer he would be able to drive his car.
 
The ophthalmologist made a speedy diagnosis and treatment was begun. Intravenous infusion, two hours, three times a day. He had a port installed in his arm where he could plug himself into the IV unit. A nurse came by every other day and drew blood to monitor the progressive debilitation of certain organs whose normal functioning was suppressed by the treatment. Every third day, the man from the pharmacy would come by with supplies of the drug which had to be kept in the refrigerator--beside the lunches provided daily by that snotty service group that continued to prepare food too rich for his stomach to tolerate (a side effect of the treatment) despite his complaints, among the fresh fruits and vegetables he felt too tired to wash and cut up for himself, and behind the two six-packs of Dr. Pepper that he knew he shouldn't be drinking anyway. They were a constant reminder that it wasn't, after all, the food that was keeping him alive. So the drug had to be kept in the refrigerator and still it would lose its potency after the fourth day and would have to be returned to the pharmacy where it could be disposed of safely and legally, since it was, when all was said and done, a controlled, toxic substance and could not just be poured down the sink.
 
His vision got worse.
 
At four weeks, he insisted on a second opinion. At six weeks, he insisted on a third. The third doctor was a specialist and considered the authority in the field. He was remote but efficient. The authority took one look into his eye and announced, "Well. This isn't that thing they've diagnosed you with at all. It's something else altogether. But I can't tell you what." The authority patiently explained, "The initial diagnosis is by far the most common one, accurate in 97% of cases, and the physical manifestation in all instances, no matter the cause, is deceptively similar.
 
"The mistake had been an easy one to make."
 
He now found himself in that select group of 3% not visited by the most common diagnosis. The authority informed him that there were no less than 230 pathogens, any one of which could be causing his problems, and each requiring a different treatment. Where to begin?
 
When they finally isolated the Cause--quite by accident--the authority reported that there were only seventeen other, similar cases in the entire known world, as if they were some sort of accomplishment--and did he want to leave his eyes to science when he was gone, to be studied so someone else might not go blind?
 
The accidental diagnosis happened this way. While the authority and his GP debated how to isolate the causative agent, the headaches, the nausea, the convulsive vomiting, the extreme temperatures, all returned one night. In the morning, he was again carried to the hospital-but not, this time, by Janet. Initial tests showed this was not a return of his previous infection. Further tests, however, did not reveal what it was. For five days, he floated suspended between this world and the next, buoyed up by demerol and weighted down by pain.
 
He wanted to die.
 
Finally, someone said to him, "I just don't think it's your time to go." And that day, they began treating him "presumptively"--that is, "as if they'd identified a particular agent--and he began to get better. He believes still that he is alive today because somebody bothered to invite him to remain in this world.
 
Shortly after the presumptive treatment began, his eyes got suddenly better, or at least stopped getting worse. It happened like this. Still in the hospital, he was watching the Ryan White Story on TV one night and for the first time in a long while he cried for someone else as much as for himself. When he drew the tissue away from his eye, he found on it a large rusty blot, the color of old blood.
 
When he looked around the room, the world was suddenly bright as it used to be in the old days, but the picture was still distorted, and 2 large areas were missing. Black hairline floaters still swam across his field of vision, but there were fewer of them. He felt this he could see again, although it was rather like looking through running water or broken glass. He calls that eye his shattered opal.
 
The authority has told him never to expect any improvement in his bad eye, for the retina is one of the few human tissues without the power to regenerate and heal itself. The authority presumes the little white tablet will prevent further damage and protect his good eye.
 
What has he gained, anyway, in exchange for his eye? A certain knowledge/wisdom, perhaps? He's learned for example, to feel homesick in the hospital when he's never in his life felt any connection to any place he's ever lived; he's learned that it is more fun to surprise the world with how healthy he can be, rather than with how sick; he finds, to his surprise, that the more connected he feels to life, the less afraid he becomes of relinquishing it. He is learning to love his own life and not want somebody else's.
 
He never asks himself if the lessons were worth the price.
 
The red capsule is the newest of his meds. He is still not happy about taking it. His doctor tells him it will prevent the second most prevalent killer of people with hiv and assures him he needs it. He learned the hard way to trust the doctor's judgment in such matters; the last time he refused prophylaxis, he found himself in the hospital less than two weeks later fighting off the very infection he's just been warned about.
 
His doctor tells him using this drug will darken his skin. The Physician's Desk Reference, which he consults for the fuller story each time a new drug is prescribed, tells him it is actually a dye and used to treat leprosy, which makes him feel unclean. Prolonged usage, it says, will turn him not merely darker, but blue-gray. He wonders what his friends who won't have seen him in a while will think when he shows up at their parties looking like a Smurf.
 
The doctor says he has no alternative.
 
The white lozenge here is supposed to prevent infection by the Number One killer of people with hiv, the killer pneumonia, replacing the monthly inhalation that prevents somewhat less efficiently and always made him feel jittery and nervous anyway. But the switch came, apparently, too late and he went into the hospital once with the killer pneumonia. This time, the treatment worked like a charm and, for a change, he came out of the hospital feeling better than when he went in. But he was four weeks on an IV drip and missed the holidays. He never liked Christmas anyway.
 
Now he takes the pills and the inhalation prophylaxis just to be sure.
 
Four medications keep him breathing. This blue one thins the mucus that constantly drips down into his lungs from his sinuses; two of these white ones are to decrease the production of this mucus. Both are stopgap measures because nothing seems to shut down the hyperactive allergic reaction that is his response to living in a toxic world without the defenses of a healthy person. Two of these other whites are to keep open the air passages in his lungs which may or may not have been permanently damaged by either the secretions from his sinuses or the killer pneumonia. Two of these yet other whites control the infection that contaminates the secretions and causes the fevers and the vertigo, and aggravates the cough that once shattered one of his ribs.
 
He counts out the white pills carefully, because he takes them at different times of the day and doesn't want to confuse them. Thank God he has the little blue pillbox to do his remembering for him.
 

 
This piece was written and performed by Robert in the summer of 1991 as part of a writers' workshop facilitated by Irene Borger in Los Angeles. Robert Hilyard died in the Spring of 1992. It was reprinted in Praxis, a curenow publication, L.A.,CA, Vol. 2, Fall 1992, in memory of Robert's fierce love, open heart and straightforwardness. Reprinted by permission of Praxis publisher, Jerry Terranova.

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