Here are the second and third of 4 parts of an article originally published in Coming Up! in August of 1988, during the time of most deaths in the Epidemic, when yearly losses of those diagnosed with full AIDS were about 50%. But even then all was not woe and teeth-gnashing! Any questions about that period, memories or comments are all welcome below.
“Oh Gilgamesh, why does thou run in all directs? The life thou seekest thou shall never find. When the gods created man they gave him death. Life they kept in their own hands.”
–Epic of Gilgamesh
Sharing the Loss: Two Families
There is an AIDS bereavement group in Detroit, a support system for counseling family members. The group’s therapist at the Center for Attitudinal Health tells me: “There’s so much growth that you find in this work. I’ve also had to deal with my own illness. Nothing terminal (it is multiple sclerosis), but you do learn how to stop being a victim.” She puts me in contact with two women in the group. Sally’s mother lost her son and divorced her husband at the same time, two years ago. “When I was going through it, I had nobody, nobody at all. My family, my mother, my brothers, they all knew he was gay for the last ten years, and they knew what he had. But after he’s gone, you just can’t talk about it.”
She’s getting the afternoon off from work to go see the Quilt. Her boss understands. “He’s a nice young man, married.” At first she told him Ty had cancer, so she could borrow some money from the company, but felt so guilty, she had to go back the next day and tell him the truth. So many other people at work you can’t tell, of course, we even still have people there who are against ‘coloreds’!”
I spent six weeks in the hospital with Ty, and I can’t tell you how many boys died without their parents. I held four of their hands while they died. And I have three right now that I still write to. They just don’t have anybody. The last thing Ty talked about was how he wanted me to get involved in AIDS work. But aside from those boys, I haven’t.
“I wanted to bring him home, but there was no room. I wanted to bury him in Detroit, but back then there were few funeral homes who would deal with AIDS.” At Cobo Hall, she discovers that some unknown person in another city has made a quilt panel for her son. Awash in sobs and laughter, she ushers me over, to show me where her son is.
“To realize that there is really that much love out there in the world. Every parent should see this. You would have to know, whoever made Ty’s, knew him. See how tasteful his name is. He never liked anything garish. It’s just like him. And the material it’s on—that was his bathrobe. I had no idea this would be like this. But it’s sad, too, of course. So many young people.”
The other group member described her family, and its response, differently. “We’ll never be the same again. I’d say we’ve changed for the better. We drew closer and worked together as I never felt we could.
“ My nephew Ray died almost a year ago. At first, when we heard about making a panel, we wondered, ’Is this hokey– or what?’ Then, “’What do you put on it?’ Then, ‘Can we do it?’ Last Thursday we saw an article in the paper and finally decided. So we spent the Fourth of July weekend sewing it as a family.
“He loved spending time outdoors in the woods, even after his diagnosis. And we had a picture of him wearing this t-shirt that has trees and a setting sun over a lake, reflecting in the water, and an eagle rising. That had to be it. ’This is so lovely,’ someone said, ‘I wish Ray could see it,’ and then we realized: of course he’s seen it—it was his favorite t-shirt!
“He and his Aunt Betty were more like good friends, close in age (he was 36 when he died) and probably closer than I was with my own brother. Even with her, though, the one area he never talked about was his private life.
“We never really knew about his lifestyle, so we found out about his…’gayness’ along with his diagnosis. We wouldn’t call ourselves fundamentalist, you see, but I suppose other people would. His mother now says that if a person has a sexual preference, they must have been born that way. That’s not how she used to think. But people saw him as the most caring, generous person in the family; even if everyone else forgot Mother’s Day flowers, they came from him. And I think he was afraid of losing that positive image.
“He was probably being rational, not wanting to tell people. Where he was living, he worked for a family construction firm, as a trusted person who could do anything, ten or eleven hours a day, six or seven days a week. When they found out he had PCP [pneumocystis carinii pneumonia], he no longer had a job. That was when he came back to us. It happened again here, once. It was his best friend in this small Lutheran town in the Upper Peninsula where our family comes from. It’s real traditional. Right-wingers. And this one friend couldn’t handle it and was very threatened by it, I don’t know way; that was a real hurt for Ray.
“But when his other friends in the town heard about it, they were furious with this guy. And of the family members–we’re talking about 30 or 40 people, only one sister-in-law was afraid, but she’s always been a bit strange. Everyone else, maybe they were a little surprised, but they were supportive. His two great aunts, 65 and 72 years old, hopped into their little DeSoto and drove 600 miles to see him when they heard about his diagnosis. His daily care was mostly by his brother, a brother-in-law who came over and shaved him every day, his parents, a few aunts; we wanted to hover and mother.
“His father was in the building trades, a big sturdy man who never showed feelings. It was a big shock to Ray to learn that his father had cried on hearing the news. He had just retired himself, and so flew to his son and spent six or seven weeks there, then brought him up here to Detroit, stayed with him virtually every day of his life. His dad learned how to regulate the IV and hang bottles of DHPG for CMV [Cytomegalovirus] that kept Ray from going blind in his right eye—he’d lost the use of his right already.”
Ray’s father had cancer during those last months, but didn’t know it. He didn’t have time to think about his physical pain. “Now,” says Betty, “he may be looking at his own death, and he’s become closer to people. Scandinavian and German people tend to be more coolish, not a lot of touchy-feely. But over the past year, we’ve probably hugged and touched and said, ‘I love you’ more than we ever had in our entire lives.
“Ray gave us the opportunity to talk. Though it’s painful to talk about, he was able to help people feel comfortable. His older brother and dad are up now in the hometown. He brought two horses with him when he moved back, and they are being taken care of up there as if they were his own kids.
“It’s almost like I’m afraid to go see the Quilt,” she concluded. “Everyone came over here to see the panel, but I guess that is still within the family, sort of private. His mom is still trying to decide whether or not to list his last name when we turn in the panel.” It is a major decision for families brought up to keep private things private.
When the family finally brings their panel in to Cobo Hall, they’ve decided to include Ray’s full name, so that others can find it. They proudly display their handcraft: a beautiful piece of work, a masterpiece. And their photo shows that Ray, smiling and rugged in his t-shirt, was no less so.
Betty, after seeing the quilt: “It’s not your private sorrow anymore. At the funeral home, well I used to think that was barbarous. But here, all this sharing, tears, it’s been a good thing. You don’t feel like you’re hiding anymore. We share this loss. Eveyone is sharing in something bigger. It’s the whole world.”
_____________________end of Part 2
“It is said: This heaven shall pass away And the one above it shall pass away, For the dead are not alive and the light Will not die.” –The Gospel According to Thomas
The Three Musketeers
This city has more than its share of women infected with the AIDS virus. Several were willing to talk about it. One styles herself Jenna: “If I’d had a little girl, I’d have named her that.
“There are three of us who are friends. The Three Musketeers we call ourselves. You know, I’d never experienced that before, to be part of a group. I’d always been a loner. Now we three go out, meet twice a month, always get together.
“I’m not sure how I got HIV positive. I was married and he was taking all kinds of drugs. I don’t know which. My current boyfriend says he’s negative. He is a female impersonator, though. Guess where he is right now? He just called and says he has a job at a private party—at Aretha’s!! Can you believe it?
“Anyway, what does it matter how I got it? What can I do now, except safe sex. And I am very active, but it’s always safe and just with this one person. I did stop for a while. After a month of total depression, I started taking care of myself. Found the support group, got a bike, joined an exercise club. Lost 36 pounds. Like I say, the best thing that ever happened to me.”
Jenna explains that the next Musketeer would rather not talk. First, she’s angry. “Just angry, period. Also, she moved to a new city and took a job where she talks on panels about AIDS every day. It’s good, I guess, because there’s not that many Black folks willing to talk about it. But she gets tired of it.”
The third and last Musketeer calls herself Faith, “cause I have lots of that.” She is also on anti-depressants to help deal with her diagnosis and its complications, and with her two boys, ages 6 and 8.
“To everybody here, you have the Plague. See, I had a substance abuse problem. Alcohol and, well, I threw my back out and an MD prescribed Darvocet, then Percodans. Then my husband and I went on heroin for about a year. Finally I took my kids to a shelter, my husband moved out and I checked into a hospital for 21 days. Now I’m completely clean.”
She and her boyfriend are “very, very cautious. Can I be personal? See, I’ll be giving him head and he’ll say, ‘We don’t need a rubber.’ But I have mouth problems, canker sores, so I say we do. My new invention, though, is going to be mint-flavored nonoxynol 9. We could sell millions and be rich. More people would be giving head than ever. Strawberry. Evergreen. Girls wouldn’t mind, guys would be happy! Don’t steal this idea, now!
“Actually, he started out as a trick, which is how I met a clean guy, supporting my habit.” Her kids, she says, will eventually go to her brother and his new wife. “I love her. They’re into everything I am, except that I’m a Christian and they’re atheists; but that’s okay.”
Faith is in AA and the kids are in Ala-Tot. She tells about the 12 Step Program’s children’s books, in which Pepper the Dog’s mother keeps getting so upset and sleeps all day and forget to take him on walks. So he thinks he must have done something wrong. Until he talks to his cat friend… “They get it. They also know about AIDS. I showed them that video about Susie, that followed a woman with AIDS from day to day to the end. She died, and her baby and husband carried on, but it was beautiful, because they did it the way she wanted.
“When it was over, the 8-year old asked me, ‘Are you going to die?’ and I told him, yes, everybody dies, but we never know when. It could be tomorrow or a long, long time.” She has to figure out how to give them just enough information to satisfy them. “When they’re ready for the next step, I’ll give them more.
“I’ll tell you. This disease, either you get your shit together or you die. Sometimes you die even if you get your shit together. I look at it as a warning. You better enjoy your life, living and safe, while you have it.”
On the first day of the Quilt: “It’s devastating. I don’t want my kids to come here and see me. I guess I want them to say, somehow, ‘We finally got rid of her at 90! Funny how she thought she’d die at 30, but she sure held on.’ It’s hard, you see all the survivors who are suffering just as badly as those with the disease. I can handle my pain,” Faith asserts. ”It’s what happens to everyone else.”
Mythology teaches that our job here on earth is to participate joyfully in the sorrows of the world.” –Joseph Campbell
And a Handful of Other Warriors
Like elsewhere in this country, the first and foremost to do battle with the epidemic in Detroit were gay males. Wellness Network is still predominantly white and gay, but is now considerably more colorful, largely through the offices of a Black volunteer director. Wellness House Michigan is a live-in hospice working in coalition with organizations like Visiting Nurse Association and Black Family Development to coordinate care to a wide range of clients.
Women, as across the country, predominate in the next lines of support: lesbians; medical and nursing people and social service workers who see the ravages firsthand. Some minority organizations and religious groups have also found their way toward the front.
The real enemy, whether among homosexual or ethnic groups, continues to be Shame. Along with Guilt & Fear. A handful of embattled activists in each of these communities tries to reverse this reality. Here are what some of them have to say.
“Among PWAs [People Living With AIDS], about 75% have ocular complications, and 20% if those go blind from CMV, the virus. We’re encountering some racism and homophobia among the profession. So it is not an unusual response to put people somewhere on a waiting list and hope they die before you have to provide service.” –Professional Rehab Counselor
“It’s easier for the homosexual community. People care about them. Nobody cares about drug users from the Black community. IVDUs [now IDUs for Injection Drug Users] are categorized, stigmatized, abused…. One doctor convinced a father to talk frankly. It turned into some sensationalist commercial. The ad agency wrote lines for him to read in a script: ‘I killed my daughter. I killed my wife. I don’t want to kill anyone else.’ Of course, he refused.” -–Community Health Awareness Group
“There is no end of horror stories about families of kids with AIDS. We know of three cases where a mother and her infant had to be separated before the bureaucracy would consider caring for the child under its ‘abandonment’ provision. One family’s friend of 27 years turned them in as a threat to the community. A foster mother’s family threatened to never let her see her own grandkids again if she went public in any way…. About 75-80% of pediatric AIDS cases here are Black and Hispanic kids. The number one problem is prejudice—not just racial, but also economic and religious differences. Before speaking to a Catholic agency I actually had a representative whisper in my ear, ‘Abstinence! Don’t mention condoms!’” –Children’s Immune Disorder
“We’re fighting to keep kids together with their mothers and at home. There’s a so-called ‘moral’ impetus to take the kids away. It’s not easy, like when the mother has to giver her kid AZT every four hours, all night, and the mother is usually sick. We teach them tricks: filling the night syringes before you go to sleep so you can just roll over and pop one in their mouth.” –Renaissance Home Health Care Nurses
“What is sad, particularly with gays within the Black community, is that if ever there was a time in history to come together, this is it. Instead it’s hush-hush. Detroit is staunchly Baptists. Some of these preachers have to start endorsing compassion. And the schools. The City Fathers have been dancing with economic ‘revitalization’ of the city, at the expense of realizing that a large segment of the population, and that means Black people, are in grave, grave danger.” — Black Male Intellectual and Writer
And when they name you, great warrior, then will my eyes be wet with remembering. And how shall we name you, little warrior?… Must we call you ‘Insolence’ or ‘Worthless One’? Shall you be named, like a child of ill fortune, after the dung of cattle? Our gods need no cheating, my child: They wish you no ill. They have washed your body and clothed it with beauty. They have set a fire in your eyes… They have given you beauty and strength, child of my heart, And wisdom is already shining in your eyes, and laughter.
–Didinga Naming Song
_______________________end of Part 3