HOLLYWOOD'S FIRST HIV POSITIVE MOVIE STAR
Sometimes it's the little things that make you lose it. After I finished packing this morning, I noticed the Blue Light Special's empty red Adidas sneakers placed on the white wall-to-wall carpeting at one end of the white leather sofa where I love to lay, gazing out at the Merchandise Mart and Sears Tower. I recalled how they looked in my apartment when he still lived in Jersey City. He'd just told me about a dream he'd had on our last night together.
I was in Herborn. A big jumbo jet had landed on the roof of my mother's house. I called to my brother downstairs to ask if he could help me get it off.
Yes, the Blue Light Special tested positive for HIV.
We found out definitively a little after noon, yesterday, a Monday so warm that we rode to the Lakeview STD clinic in our t-shirts. The woman who had shown up at his front door the week before wasn't there. No matter. They don't keep you waiting long for bad news.
A kind, if ineffectual African American woman with straighened hair, asked the Blue Light Special to accompany her into a private counseling room. The Civil Servant didn't want me to come until I played the New York card.
But I flew here to be with him today I said when she said that she hadn't established "a relationship" with me.
It's OK the Blue Light Special said.
The Civil Servant assumed he already had been informed of his status and that he was there to get counseling about next steps. I told her that he hadn't been, officially, and asked to see the paper that she had handed to him. In tiny print, it indicated by both name and number that he had tested reactive (to antibodies in the blood) previously, a result now confirmed by the laboratory analysis of the blood sample he had given two weeks earlier.
How are you doing? she asked.
OK he said with his solemn Teutonic face.
All our doctors have full caseloads she began but I have a book here that lists HIV specialists all over the city so we can make some calls together. The Civil Servant seemed relieved when I told her that he already had an appointment scheduled at the Core Center. Then she asked me to leave the room.
I went to pee and sat in the hallway staring at the public health brochures and copies of Poz magazine, unsure if I was feeling sorrier for him or for me.
The door opened and the Civil Servant called me back into the room by name.
Have you and the Blue Light Special had sex recently? she asked.
Until two nights before, the answer to that question would have been not in almost a year. But after we'd returned from a late-night visit to Touche, an inconveniently located leather bar he'd last visited with Gonzo, the Blue Light Special had aggressively initiated sex by grabbing my dick--which still gets hard whenever we're in close proximity--and gently pushing me down on his own. Not my idea of a seduction, more an expression of animal need, but I felt like any objections would be interpreted as a rejection based on what we both believed was his new HIV status.
Clumsily and without much passion, I sucked him off knowing from past experience he was unlikely to ejaculate that way. He got up to get a condom when he realized that even a dose of poppers was not going to get me to deep throat him. Then while fucking him and looking down at his drawn face, the face of the incubus that used to scare me with its sexual intensity, I realized once again how much he always puts his needs before mine.
Why, exactly, was I putting my definition of safe sex--everything goes for me except getting penetrated anally without a condom--to the ultimate test?
Needless to say, these thoughts inhibited my orgasm but didn't affect my performance. He came with a great shudder. Duty done, I rolled over to go to sleep even though I could tell he was ready to go a second round. I made it clear that I wasn't. Eventually, he fell asleep, lightly snoring on his back.
The Civil Servant asked me if I wanted to take an HIV test. I told her I had tested negative and would wait until I returned to New York and had a regular check-up. She didn't press me.
We left the Lakeview clinic with a legal referral and an offer of additional assistance if the Core Center didn't work out. The Blue Light Special got mad at me as we began to discuss what had just happened while unlocking our bikes.
Don't talk so loudly about me being positive on the streets. That guy just turned around to look at me! he admonished.
Uh, perhaps because he's cruising you, I thought, but kept my mouth shut. When David got sick the first thing I did was promise to myself that I would never be angry with him again, a promise I mostly kept and one which, I believe, resulted in a strengthening of our friendship as he got sicker. But I wasn't sure I could do it again with someone like the Blue Light Special who manages to get under my skin like no one else and who bore a much greater degree of personal responsibility for getting infected. David, after all, didn't know any better.
Just as we had planned, we hit the Belmont library to pick up some new audio books for the Blue Light Special who's trying reduce his German accent and sound more American. Then we returned to the Lincoln Park Zoo to say hi to the polar bears, his favorites, and check out the spring flower show. That's where I took his first post-diagnosis picture. At least that's how I'll always remember it. His broad smile, the one I've photographed hundreds and hundreds of times, doesn't seem diminished in the least.
We rode to Home Depot to pick up some WD40 for his bicycle chain and then searched in vain for a green grocer that had been recommended for its quality and prices. Both of us were sweaty and thirsty by the time we reached his apartment.
We spent the next several hours eating, talking and cuddling. I tried to be reassuring without being unrealistic. I discouraged him from trying to figure out exactly how he had been infected.
You can't turn back the clock I said. What difference does it make? It's more important to focus on your future. You caught this much earlier than most people do. The big decision you face now is how soon to start your medications.
We never made it to the Body Worlds 2 exhibit at the Museum of Science and Industry. I didn't relish the prospect of paying $20 for an experience that would provide the Blue Light Special with ample opportunity to dwell on the possible deterioration of his glorious body.
Are you having a pity party? I asked when he turned away from me on the bed after a long silence. I can read him like a book. Or maybe he can play me like a fiddle, who knows?
That's not an effective treatment strategy. Things could be a lot worse. Imagine what it would be like if you had to depend on Gonzo or your drug buddies in the Pines instead of me and Thug Lover.
You're my angels he said before confessing that he had been a "bad boy." I didn't express what my unemployment buddy,Her Fierceness, calls my completely justifiable sense of outrage.
You're not a bad boy, but you did a bad thing I replied. Paging Dr. Phil.
I finally persuaded him to get up and go to the Harold Washington Library, part of his new day-off routine.
It's better than lying here on the bed, brooding.
First we stopped at Kinko's to photocopy the tax returns I had prepared for him on Saturday while he was at work. I figured we would need them as proof of his financial need for discounted or free HIV treatment at the Core Center.
After picking up a DVD that he had reserved at the library, our relationship returned to normal. We spent at least 90 minutes looking for an area where he said we could find a good, affordable Mexican or Puerto Rican restaurant, riding east on Kedzie through the most blighted areas I'd seen yet. I always forget just how big Chicago is and that I tire a lot more easily than the Blue Light Special even without HIV because of our age difference and my difficulty in adjusting to the Thug Lover's bike.
The evening devolved into accusations, excuses and recriminations until a guy he stopped on the street in Wicker Park gave him directions to a Mexican restaurant a few blocks away at the intersection of Western and Milwaukee. It wasn't great, but we left in a better mood.
Back at the apartment, I tried to watch the French silent film he had picked up at the library but fell asleep on the couch. He initiated sex a second time as soon as we got into bed, giving me a sloppy blow job that thoroughly wetted my sleeping shorts and licking the semen from my stomach, something he has never done before.
What's up with that? I asked.
What difference does it make? he replied, with the incubus grin.
Uh oh, I thought. This doesn't bode well for the future. I slept fitfully, awakening at 5 a.m. and wondering what lay in store for us at the Core Center.
The Blue Light Special had set the alarm for 7:30. He got up without much prompting but instead of dressing he sat down at his computer and began trying to create a new password for his online banking account.
At 8:15 a.m. I began to pack and announced that I was leaving.
If you're not going to let me help you the only way I know how, then there's no point in my sticking around.
It wasn't the first time I had threatened to go back to New York during my brief visit. On Sunday evening, after we had returned from a long tiring day on our bikes that included watching a parade in Greektown and a visit to the Chicago History Museum. It ended with him getting a flat in Boystown, we had a fight about what to do about dinner. I had offered to pick up some garlic so that we could use the shrimp I had purchased shortly after my arrival.
I have an easy recipe for scampi I said, forgetting that the kitchen truly is his domain.
Thug Lover doesn't tell me what to make he responded, tensely. He just enjoys whatever I make for him.
I'm not Thug Lover I answered, resenting the comparison to his absent roommate.
Our argument escalated quickly, like blood clouding water. When I refused to go out to eat with him--he offered to treat, in return for doing his taxes--he told me to leave the apartment.
OK, I'll go home I said going in the bedroom to pack.
Are you crazy? he had asked then, as he did now, telling me that I should calm down.
I continued packing until he started dressing. We were out the door at 8:35 a.m., only five minutes later than we had planned for our 9 a.m. appointment. Who knew if my second hissy fit had even been necessary?
We arrived at the Core Center a few minutes early. The Blue Light Special was told to fill out a single form with his address, social security number and other standard information. He balked at providing his social security number or indicating his race and religion.
Look, they've already got your social security number as a result of your ER visit. If you want this bureaucracy to help you, I suggest that you cooperate fully and be completely honest about your situation.
He put this advice to test as soon as an unsmiling but clearly efficient clerk called his name, informing her that he was an unemployed student.
They're going to find out that you have a full-time job I whispered as soon as she walked away and pointing to posted signs announcing that federal law protected all aspects of patient confidentiality.
Sure enough, the subject of income came up again as soon as he was given an orange card that he would be required to present during all future visits. We were referred to a second clerk two computers away who was responsible for determining his financial status.
Well, actually, I had a temporary seasonal job last summer and I was just hired again last month he said, truthfully.
I thought you told the other woman you were unemployed she responded.
The financial status clerk became much less suspicious and more compassionate as soon as I pulled out his W2 form and completed tax return.
Everybody's got somethin they gotta deal with she said upon learning that he had learned his status only yesterday. Me, I've got lupus. And a 17-year old daughter who wants to stay out all night.
She also indicated that he should be eligible for the state ADAP program that will cover the cost of any HIV medications. I didn't ask how their sliding scale worked or how much he would be charged for other services for fear of scaring him away.
While we were with the financial status clerk, an elderly black woman interrupted to ask for her assistance.
The pharmacy just sent me to Walgreen's for my prescriptions she complained.
You have to go there now because you're old enough for Medicare to take care of the costs now, she said politely, but firmly. Then she explained to us that the state was having difficulty subsidizing medication costs and that the Core Center was shifting people with HIV/AIDS who were eligible for Medicare or Medicaid to those programs.
Once the Blue Light Special's financial paperwork had been completed, a friendly if unfocused black woman in her 30s introduced herself as his New Patient Guide.
It's my job to take you around to all the services that are available to you here she explained. First I'll take you to your clinic on the third floor where you'll always report for your follow-up appointments.
She got my name wrong and apologized.
It's a bad day for me.
Neither of us asked New Patient Guide why but on the way up in the elevator, she filled us in.
A good friend was taken off life support and passed last night.
As soon as the Blue Light Special was out of earshot, I asked if her friend had AIDS. He had. Later, she told both of us that she had been HIV positive for 11 years and that she had a seven-year old daughter who praise the Lord was virus-free.
I had a couple of bad scares so now I'm committed to taking my meds she said even though they're pretty toxic.
A receptionist in the crowded waiting area directed us to the east side of the clinic. We were the only Caucasians present aside from a female social worker. The Blue Light Special better get used to the American urban melting pot, I thought.
The night before, when we passed the Core Center on our bikes and I noticed that it was named for Ruth M. Rothstein, I couldn't resist ribbing him.
It's a pretty delicious irony that you may be getting free medical care from a place honoring a Jew even though your grandfather was a Nazi.
By the end of the morning, New Patient Guidehad introduced us to an Illinois state benefits coordinator (nothing there for the Blue Light Special's because of his immigration status) . . . a case manager who instantly put him at ease by teasing him about his body though she made me a little wary with her probing questions (is your name on the lease? how do you pay the rent for that address on your income? does your roommate know what's going on? ) before deciding that he didn't need her services because of his stable employment and living situation . . . a mental health counselor (given your recent drug use and inability to explain why you did it, I think a follow-up consultation is advisable) whose psychological assessment offended him (why would she think I hear voices? or see things that aren't there? ) . . . and an Asian nurse who finally intervened with the young Indian physician who kept us waiting longer than he was supposed to while he mysteriously consulted with another patient in the dark.
Truly, the Core Center offered one-stop shopping or in more voguish terms, the kind of "wrap-around care" that researchers believe leads to better outcomes. None of the staff questioned my presence or seemed to resent my occasionally assertive questions and additions to the Blue Light Special's answers (his roommate gives him a rent reduction in exchange for food shopping, cooking and cleaning). America may not recognize gay relationships or have universal health care but this ain't bad. My tax dollars were being put to use for something I could be proud of.
The physician apologized, explaining they were short staffed, and ushered us into a consulting room and began delivering an HIV 101 lecture in a flat mid western accent. It may have been useful for some patients but we already were familiar with the information he clearly was providing by rote. He earned my trust and admiration when he responded I don't know, a phrase I've never heard a doctor utter before, to one of my questions but then lost it with another.
I had asked him about the two current schools of thought among AIDS treatment specialists. One group advocates using drugs to eliminate the viral load from the outset and keeping the t-cell count high; the other has adopted a "wait and see" attitude based on the results of blood work at three month intervals, prescribing medication only when the t-cell count falls below a certain level.
I don't see any reason not to begin taking medication immediately, even if you just tested positive he said blithely.
Uh, how about the side effects? They can be bad enough over the short-term. Who knows what will happen to people who end up taking them for decades? What if they compromise the efficacy of future, less toxic treatments?
Later, it occurred to me that early drug treatment may very well be a public health strategy to reduce infection rates by keeping the viral load as low as possible in the HIV positive population and to reduce acute health care costs incurred by an uninsured population coping with opportunistic infections even over abbreviated lifetimes. (Live Life Out Loud dismissed this when I asked her, however, insisting that long-term drug therapy costs more. I'll reserve judgment until I see a cost benefit analysis.)
The physician gave the Blue Light Special a follow-up appointment in two weeks and signed the paperwork necessary for him to proceed to the lab where they would draw seven vials of blood, enough not only reconfirm the presence of HIV antibodies, but also to determine his viral load, t-cell count, possible infection with other STDs and major organ function, including kidneys and liver.
Even though the Blue Light Special already was late for work, I persuaded him to stay and have his blood drawn instead of returning another time. They kept us waiting longer at the lab than anywhere else but at least we got to speculate about the cute teenager who was waiting, too. We both assumed he was gay but his mother, not he, entered the lab alone.
The lab was the only place where I wasn't allowed to accompany the Blue Light Special. I wondered if he behaved any less passively outside of my presence.
By this time, New Patient Guide was as eager to see us go as we were to leave. Nevertheless, when the Blue Light Special emerged from the lab, I asked if we could meet the nutritionist downstairs, mostly because I thought this might be the one person with whom the Blue Light Special could establish a continuing relationship, the kind that could encourage him to form a real connection at the Core Center. He studied nutrition, he takes a handful of vitamins every day and he examines food labels obsessively to reduce his sodium intake. She wasn't available but New Patient Guide told him he could come back and see her anytime before hugging us goodbye.
Depending on his t-cell count the Blue Light Special may not have to return for another three months after his next appointment. I'm afraid that the arrival of a bill or the side effects of medication, if he chooses to go that route, could undo the progress that I think we made today. We shall see as he would say.
I didn't realize how stressed I was until I tried to pick up Thug Lover's dry cleaning and discovered that I had left my wallet at the 7/11 where I had stopped for a diet Dr. Pepper after the Blue Light Special rode off to work. I spent the next hour or so reading the Times online to get my mind off of things. A news item announced that the coroner had reported that an accidental drug overdose had caused Anna Nicole Smith's death. That was about all I absorbed. I decided to call Her Fierceness to unload.
At 4 p.m. I left the apartment, thoroughly unprepared for the steep temperature drop to 37 degrees. A harsh wind off the lake made pedaling north to the Montrose Beach parking lot, a gay crusing area for cars, extremely difficult. I wanted to check out the scene before meeting the Blue Light Special in front of the nearby Elk's Veteran's Memorial at 6 p.m. Guys sitting in parked cars flash their brake lights at each other to indicate their interest. Not much was happening so I killed some time freezing my fingers by photographing the Montrose Beach bird sanctuary from a chilly pier.
For once, the Blue Light Special showed up early. We ate delicious spinach appetizers, grilled meat and couscous at a Moroccan restaurant Thug Lover had recommended, warming our hands on the tiny mint tea cups. I had decided not to let him treat me but I had no choice when the bill arrived and I discovered that they didn't take credit cards.
The world really is topsy turvy when you're working and I'm not and you're taking me out to dinner I said.
He seemed to be more pleased than I thought he would be, handing the waiter a crisp $100 bill.
On our way home, we finally managed to find Stanley's the green grocer we had looked for on Monday. The prices thrilled him, the quality of the produce less so.
It's OK if you buy it on your way home and use it immediately he observed. Among his purchases was a bulb of garlic.
I bought a pint of mint chip ice cream to celebrate the end of a very draining day. Both of us returned to the apartment in very good moods. The Blue Light Special was as affectionate as he's ever been.
He also made another confession.
I knew I would become positive in America because I had a dream once. I dreamed that I would become the first HIV positive Hollywood movie star.
Really? I asked, more gently than I thought possible.
Yes he said in that purring way of his that comes across even in our daily phone conversations.
Well, I'm sure you will. And I'll write the role that will make you famous.
Enabling has never been my strong suit but for once I believe the occasion called for it.
As soon as he opened his eyes this morning, I played Celluloid Heroes by the Kinks,a song I'd tried to send to him via e-mail earlier.
Everybody's a dreamer
Everybody's a star
Everybody's in show biz
It doesn't matter who you are
There are stars in every city
In every house and on every street
But if you walk down Hollywood Boulevard
The names are written in concrete.
The music startled him.
This is a sad song he said, sleepily.
I don't think so I said, hugging Blue Light Special hard.
I wish my life was a non-stop Hollywood movie show,
A fantasy world of celluloid villains and heroes,
Because celluloid heroes never feel any pain
And celluloid heroes never really die.
Labels: Celluloid Heroes, Chicago, Core Center, testing positive