Vepesid

It is a beautifully warm Monday afternoon, and I wake with good spirits to receive a telephone call from a former colleague in Washington, D.C. We talk about my current situation, I crack jokes in the face of adversity, and we laugh hilariously like old times. After a few minutes, she tells me that someone is waiting outside her office, that she must run but had just wanted to holler at me for a second. She tells me that I haven't changed a bit and that she loves me. She'll keep in touch.

I remember that today is the last day I can remit my rent check without penalty of a 5-percent late fee. I find my checkbook and cringe as I write the check. When I signed the lease almost two years ago, I knew full well that the rent was outrageous. But now, my hand shakes a little more nervously each month as I sign the check.

I take the check to the management office on my way to the corner bodega. By the time I return to my complex, the mail has been delivered. Despite appearances, my life has become so solitary that I am forced to look forward to this daily ritual. As I lock the box and peruse the envelopes, I am overjoyed to find that today's assortment contains two reimbursements checks from Blue Cross/Blue Shield.

I return to my apartment, pour my fist cup of coffee and sit with a cigarette to open the good news. The checks total $325--an amount I have already paid my therapist and hematologist. This will carry me through the remainder of the week. I open the next envelope, which is a $380 bill from my radiology every word on the bill three times, I conclude be billed directly to my insurance carrier as I had been led to believe. I must remit payment and then submit a claim for reimbursement. The worst of it is that this bill only covers the cost of two radiology treatments, and I receive four treatments per week. I lose my appetite and decide to skip breakfast, though I know quite well that my body is in desperate need of the vitamins and nutrients, calories and bulk.

I could bitch and complain. I could become depressed and withdrawn. But what good would either do? So I sit and contemplate my situation. I am one of the lucky ones. No matter how unfortunate my situation may seem, I know that I am a "privileged nigger." I know this because not only have I worked every day of my life, but for the last seven years I have worked in various positions in HIV prevention. I have a good job. I have health-insurance coverage. I have access to the most updated medical information and a stellar medical team.

On January 29, 1991, my hematologist informed me of my diagnosis of pulmonary Kaposi's sarcoma. He compassionately explained to me that I would probably have to undergo aggressive chemotherapy treatments for several months. When I complained, he explained that the most recent studies from San Francisco indicated that left untreated, the average postdiagnosis life expectancy of someone with my condition was three months. He ordered blood drawn, X-rays and a gallium scan. On the way home, I stopped at a liquor store and purchased a bottle of Haig & Haig Pinch Scotch. I also stopped at Li-Lac Chocolates and purchased a pound of champagne truffles.

Back at my apartment, I poured myself a drink and placed half a dozen of the chocolates on a china dish. I surveyed my mail, paid bills, renewed my subscription to Out/ Look and proceeded to conduct my personal business. I played back my telephone messages and copied the numbers of callers onto a message pad. I bad received a call from my friend Lauri, with whom I cochair the African-American Alumnae/i of Vassar College.

Positioned with my Scotch, chocolate and cigarettes and my Vassar file, I returned the call. Lauri and I discussed pending business, divided up assignments and made lists of the items we would fax to each other the next day from our offices. With all business efficiently taken care of, the conversation became more social.

"So, how are you doing anyway?"

"Okay, I guess. But my doctor diagnosed me with AIDS today. Pulmonary Kaposi's sarcoma, more specifically."

"What? And you let me go on like that about business? Why didn't you stop me?"

"Well, you know, the shit has to get done, and life does go on."

After I finished talking with Lauri, I started to make a few of the perceived obligatory calls to inform people of my condition. The first call was to George. George and I have worked together on these issues for numerous years. I suppose that's why I expected him to react to the news in a very enlightened, professional manner (whatever that might be). George listened to the details and then asked me what I was doing. I explained to him that I was having cocktails and eating,chocolates. He told me that I was in denial.

"No, I'm not in denial. I just told you I'm drinking Scotch, eating chocolates, and I have Al D S. That's not denial, George."

I firmly believe that every individual has the right to select a support group that works for him or her. Mine, for the moment, happened to consist of Benson & Hedges menthol lights, 12-year-old whiskey and expensive confections. Without them I don't know how I would have made it through that first night. With them I managed to call my brother, some cousins and assorted friends, realizing that each time I'd have to assist them in dealing with their issues before they could assist me in dealing with mine. Disclosure is a very tedious task.

During my second visit to my hematologist, he prescribed a number of medications. Aside from the antiviral Retrovir, I was instructed to purchase Myambutol tablets, Zovirax capsules and a five-day supply of Vepesid oral chemotherapy capsules. I went to a nearby pharmacist who had been recommended by my physician, hoping that he would assign the costs to my insurance carrier.

When I presented the prescriptions to the pharmacist and asked about assignment, be explained to me that he couldn't do this with Blue Cross/Blue Shield, but that there shouldn't be a problem. If necessary, I could write a check. Thinking to myself that I don't possess any major credit cards, that I carry a New York State driver's license but live in New Jersey, and I have no identification that bears any reasonable resemblance to my current look, I figured there could be a problem if the acceptance of my check were to be based on any of these qualifiers.

The pharmacist packaged the drugs and used an electric calculator to tally the costs. When be reached the balance, he looked up at me with a smile and said, "Mr. Harris, that will be $1,329.55. Oh, and you can postdate the check."

"Thirteen hundred and twenty-nine dollars! And I can postdate the check? Until when?"

I picked my chin up from the counter and nervously wrote the check. The lack of identification wasn't a problem. The pharmacist explained to me that he didn't have to see any ID because he was fully aware that my doctor didn't see "riff-raff." But what if I were one of the many who received medical attention in a clinic or emergency room? What if I didn't have health-insurance coverage that would reimburse me eventually? Thirteen hundred dollars for four prescriptions. And I knew that this was only the beginning. There would be lots more drugs to be bought.

I am thankful for the privileges I have. I resent the fact that these are not readily available to the bulk of people of color dealing with the HIV disease. I am angry that because of the differences in the manner in which local municipalities and state health agencies set health policies, I am cut off from certain benefits as a result of the county of

new open or essay I have just finished, but there is no one I can immediately turn to share these words with. I feel alone most when I realize that through the years I have become strong. I have become stronger than would be necessary if I had a shoulder to sob on, arms that reassured me, lips that passed on a reason to live.

I'm not waiting for a cure. I'm not looking for a miracle. I am not resisting the inevitable. I will die. I will die much sooner than I would like to accept, and there is little I can do about this fact. Kubler-Ross can call that acceptance if she wants, but in doing so, I believe she minimizes one's will to fight. It is precisely because I know I will die that I work even more diligently for the causes I believe in.

It is within this framework that I make decisions about my medical care. It is within this framework that I have made decisions to increase my activities or lessen my involvement in certain organizations. It is within this framework that I continue to plan and conduct HIV-prevention programs for African-American gay men. It is this philosophy that has caused me to renew work on a manuscript of poetry and fiction I began more than two years ago.

It is all about the quality of life I have found. My quality of life is a control issue. I refuse to be controlled by a daily regimen of oral medications and radiation therapy, controlled by weekly chemotherapy, treatments, controlled by the increasing number of side effects, fatigue or depression, medical bills or reimbursement checks. I refuse to be controlled by limitations imposed on me by my race and ethnicity, class, sexual orientation and health.

I have made a commitment to relinquish control only as a last resort. I want to live the rest of my life with an energy that ignites and irritates, burns and bubbles, soothes and inspires until it bursts from the atmosphere, dissipating into the cosmos.

COPYRIGHT 1993 Essence Communications, Inc.
COPYRIGHT 2004 Gale Group