Yesterday I was reading an article about anti-gay protests at a gay pride parade. One of the protestors was holding a large sign that said, “Got AIDS yet?”; another had one that said “AIDS: Kills Fags Dead”. My first thought was that it’s too bad there isn’t a disease that afflicts the ignorant and bigoted. My second thought was to realize that if those people actually knew anyone afflicted with AIDS, if they could humanize the reality of AIDS, they would know to be ashamed of their hurtful words. So with that, let me tell me a couple of stories.
Lynn and I have both lost loved ones to AIDS, I an uncle and she a brother. We not only lost them to that horrible disease, but we helped take care of them through it all. And for both of us, it changed our lives enormously. It gave us a new perspective on both life and death. My story first, then hers.
My uncle Richard was a gay man, but none of us knew it. Like most gay men of that age, he tried to run from who he was by getting married and having children. He had 3 boys, but had gotten divorced long before he came down with AIDS. I recall vividly the phone call I received. It was the fall of 1986 and I was a freshman in college. My father called to tell me that Richard had AIDS, and his voice was shaking on the phone. After we hung up, I remember thinking, “Boy, my parents are not going to handle this well.” My stepmother is a fundamentalist Christian of the pentecostal variety, a group not well known for their tolerance of homosexuals. My father, while not a religious man, was from an older generation, from an era when everyone just assumed that homosexuality was an abomination. And my fear was that they were going to react badly and shut him out. I’ve never been so glad to be wrong about anything in my life.
A few days after that phone call, my father called me again. He told me that they had asked Richard to move in with them. Their house had a garage that had been converted into a mother-in-law’s apartment, with its own shower and kitchen. My father told Richard that they wanted him to come live with them, that he could live in that apartment where he would still have some privacy, but also have them there to take care of him when he needed it. Most people take pride in their children, but this is a matter of great pride I have in my parents. They transcended their generational and religious prejudices and walked a path of love rather than fear or hatred.
Richard moved in with them, and the following summer I came home from college. Things were difficult for him. Like most AIDS victims, he went through periods of depression, anger and self-pity. He tried to commit suicide twice in the first couple of years, half-heartedly. His t-cell count was dropping steadily and he was in and out of the hospital. After a couple years, something in him snapped. One day he woke up and decided that he wasn’t going to let AIDS destroy him. He told us that he wanted to do something positive with the time he had left, not just sit and wallow in misery. He had encountered many other AIDS victims in the area who didn’t have families to take care of them and he wanted to do for them what we had done for him.
We went looking for a large home that could be converted into small apartments, and found one that in pretty bad shape. Richard bought the property and my father, myself, my two younger brothers and several volunteers who also had loved ones with AIDS worked for several months to make it livable. Richard envisioned this as a sort of halfway house for those with AIDS, a place for those who were not acutely ill but still needed some nursing, nutritional help, and other care. He worked tirelessly, lining up nurses, aides, nutritionists, and therapists to volunteer their time. He named it Rainbow House. A great many people gave very generously of their time, money and energy to make it a reality.
In the meantime, Richard was working on a way to finance the operation and came up with the idea of a second hand store. He had owned several clothing stores in his life, so this was really his area of expertise. He leased a large building in downtown Kalamazoo and started spreading the word that it was accepting donations of clothing. The donations absolutely poured in, and he made the store look unlike any second hand store I’ve ever seen. The displays in the windows were incredible and the place attracted a lot of attention. The shop was called Rainbow Resale and it was a hit from the start.
The absolutely incredible thing about it was the sheer amount of donations it took in. People would come in and drop off bags of clothes by the carload, many of the items still with the tags on them. Everything from gym shorts to formal dresses. Within a couple of months, not only was the entire floor full but so was the basement, which was piled with bags of clothes stacked literally over your head, bags we hadn’t even looked in yet. I don’t know how many hours I spent sorting through bags of clothes, separating them, tagging and pricing them, but it was well into the hundreds. And for my father, who retired around this time, it became almost his full time work. He was there every day, helping build new displays, sorting clothes or working behind the counter. The whole thing was an enormous success.
And here’s the most amazing thing. From the moment Richard decided he was going to live with AIDS rather than dying from it, the moment he decided to get off his butt and do something, his t-cell count went through the roof. Literally within a week, it had quadrupled. His doctors were amazed. His immune system got an enormous boost and for the next several years, he remained mostly healthy. He started putting on weight again and he was actually healthy and happy for about 5 years, and this was before they had really gotten a handle on the kinds of combination drug therapies that helps keep those with AIDS that way today. Today it’s not at all unusual for someone to live 10 years with AIDS. In 1986, it was astounding.
Unfortunately, it couldn’t last forever. The last 2 years of his life, he went downhill. He got pneumonia several times and was in the hospital a lot. My father kept the resale shop going while Richard was sick, but by that time most of the folks who had lived at Rainbow House had died. Richard finally made the decision to close it down. He just wasn’t healthy enough to do it anymore and he knew that his time was about up. He was losing weight rapidly and had more bad days than good. When the end came, my parents called me at work and I left to go and be with them. He was in a coma by this time, laboring to breathe. The amazing people from Hospice were taking care of him. His doctor was leaving large doses of morphine so that he would be kept peaceful and out of pain, and so that his body would slowly shut down. When he finally drew his last breath, my father and stepmother and I were standing at his bed, holding his hands and telling him that it was okay to go.
After he died, my father was the executor of his will. He sold everything off and donated the money to the local Hospice organization. They are incredible people and the work they do brings peace of mind to countless families.
Lynn’s experience was similar, but it was her brother Steve that was struck down with AIDS. This story is in her own words:
One summer my very sick brother showed up at my home. I knew he was ill but didn’t know to what extent. I found out later he had come to my home to die. He had been given about 3 to 4 weeks to live. I begged him to come to the hospital where I was working, but he refused. I would come home to find him lying on my living room floor watching TV and in horrible pain. After about a week I got a phone call at work from him asking if he could come to this hospital where I was employed and I told him I would call him right back. I went to the director of the hospital and explained that my brother Steve had no insurance, was in terrible pain and had AIDS. Without hesitation he called in a social worker and told her to get the ball rolling to have him admitted under my personal doctor’s care. My doctor had a cousin who had died from this disease and he was more than willing to try to help my brother even though he had never taken an AIDS case.
My brother was admitted and after several tests it showed he had a viral pneumonia (only native to patients with the HIV virus) and also CMV (a very deadly virus that can strike any organ or tissue) plus several other conditions mentioned here. Thank God the dementia came much later.
After many days of treatment, he started to feel much better. He had a direct line inserted into his chest called a Groton cath. This made it easier to give blood for labs and to have his meds infused. Steve’s life became easier; even though he made 30 some odd trips to the hospital, he seemed to thrive. He bought a new car and went on cruises. He had a large circle of friends. As for me, I was panic stricken when I found out how far this virus had damaged his young body.
After his admission to the hospital that first time I started hunting for a support group to join. The Tuesday after his admission I found a support group meeting at a local church. I drove there alone and just sat in my car in front. I glanced over to a car that drove up beside me containing 2 men about my age. They rolled down their passenger window and said, “You look scared to death, can we help you?”. I started crying and they came to my car and reached in and gave me a hug. I told them about my brother. Larry and David were their names and we became friends at that instant and they accompanied me into the meeting. The first thing we all did is say (like in AA), my name is so an so and I have AIDs or my name is so an so and my brother has AIDS. About half there were patients who were infected with the virus and the other half were had loved ones who had it.
Most of the patients were having a hard time financially and at these meetings they could receive funds to help pay their utilities and other bills. It was hard to believe, but most were happy when their T cell counts had taken a dive to 300 or under. That is where the division was made between having HIV and having AIDS. The government didn’t supply any benefits until the person’s body was dying. The amazing thing is they were pleased when they reach that point because then and only then were they given medication without charge. Most of the medication cost in the hundreds of dollars a month for them.
Cheerfully I joined this support group and before long I was made president. I didn’t take vacations or have any social life because all my off the job time was spent with visitations and meetings trying to get as much as I could to be of help. I began stockpiling medications when my friends would die. I would get as many drugs as I could and try to supply meds to those who hadn’t reached that 300 T cell count. I must tell you I knew I was breaking the law. While I was doing this I learned of a man in Orlando who’s name was Garcia, he too had done this. He was arrested and stood trial. I am pleased to say he not only was found innocent but was called an “angel of mercy” by the jurors. Now I knew I was okay in continuing what I was doing.
My brother lived 3 wonderful years filled with quality of life. We enjoyed every moment and when the time came that his health declined and no medicines could sustain his life, we let him go. Hospice came and he was kept out of pain until the end. I had the pleasure of holding him as he passed away. He had been very pleased I was so involved with the support group even though he only ever attended one meeting. He told me he had gone to so many in the state he had moved from and couldn’t go through watching more friends die. But after his death, I continued my involvement.
I became an AIDS advocate and asked to be called when patients were newly diagnosed. That way I could counsel with the family and the patient immediately and help to educate them about this disease. The first thing family members had to understand is that no one catches this virus by kissing, hugging, holding or loving anyone with it. You can eat off the same dishes and silverware, wash your clothes with their clothes and live normal lives with them. Remember that the virus does not live very long outside the human body.
I have met with and befriended dozens of AIDS patients and their families over the last few years. They come from all walks of life – rich, poor, male, female, gay, straight and every nationality. I never once asked any of them how they got the virus because it didn’t matter. What matters is that they are human beings and they are suffering. My father was a Methodist minister and I was raised to have a strong faith, and one thing I knew for sure was that I did not want to face my God and explain to him why I didn’t do what I could to help these people when I was in a position to do so. I could not, after all that my brother taught me about being human while I took care of him, turn my back on others who needed some of that humanity shown to them.
I hope these stories help put a human face on AIDS. I hope it also helps motivate people to get more involved, not necessarily on that issue but on almost anything that could help people. I’m a cynical guy and I don’t hold out much hope for human race as a whole. But I know from my own experience, beyond all doubt, that individual people can do a great deal of good locally. We each have a certain sphere of influence of varying size. It could be just your families, churches, co-workers, or community you live in. But somewhere in that sphere of influence, you can do something that will make the world better for someone in it.
Whatever skills you have, they can be put to use helping someone. My father, who was in construction safety management, helps build Habitat for Humanity houses and he works with a group of other retired guys who go around doing little projects for people in his city, building handicapped ramps for the elderly or playgrounds for daycare centers. When I was a teenager, for one summer I volunteered at a senior citizens center. All I did was just go there 3 times a week and visit with people for a couple of hours. They assigned me to some of the people who didn’t have family that visited them regularly, and it helped to take away some of their loneliness. You could volunteer with a literacy organization and help teach people to read, or visit the local children’s hospital and bring them gifts or just spend time with them. The opportunities and the needs are endless and it doesn’t require you to give up your social life. Just give a few hours a week, or one weekend a month.
Arthur Ashe, who like Richard and Steven died of AIDS, said that service to others is the rent we pay for the space we take up on the planet. We spend a lot of time bitching about the world, and if you read the newspapers every day it can seem pretty bleak. The fact is, you can’t solve poverty and malnutrition and you can’t put an end to wars and barbarism. You can’t change the world. But you can change your world. And if enough of us make the effort to do that, we might find that the nightly newscasts look a lot different than they do now.