Don Joliff was interviewed by Dale Bell.
I was diagnosed with full-blown AIDS in August of 1992 and I, at that time, had 70 T-cells and the only medicine at that time was AZT, which is what I was put on. It worked for a few months, but then gradually the virus started to overcome the AZT and my T-cells went down to as low as 5. I was getting pretty sick.
I contracted PCP, which is pneumocystis corinii, a form of severe pneumonia. That's when I decided, with the doctors' recommendation, that I retire from work. So I did retire in 1996. There were new medicines that were coming out that did help gradually over the years. But nothing until the cocktail came out. That's the way it went for a while.
The different medicines gradually built up my system so that I could overcome a lot of the infections. I'm very thankful that the new medicines came along, finally the cocktail. As far as a normal person's immune system, it runs anywhere from 1,000 to 1,200, 1,500 - in that range. Anything below 200 is considered full blown AIDS.
Don's caregiver is his longtime partner, Ed. Was he tough on you Don?
Yes, but it was a good tough. It was a very good tough. He pushed me when I needed to be pushed. Otherwise, I think I would have gradually given up. I was weak and he said, "Come on you can make it. You can make it into the gym, you can ride the bicycle for a little while." By him doing that, it helped me get out of bed and get busy and do something and get the exercise that I needed to help me carry on.
When a caregiver does that, Don, what is it a manifestation of?
A manifestation of love and concern. They're showing that they really care. That they're going to be there for you in the bad times as well as the good.
How would you define the word "honor" in this relationship?
I would say that in the trust that he's shown to me, in being here for me, is an honor in itself. That showing that he's going to be there no matter what, and that he's looking after my best interests by pushing me, by saying "eat more," by saying "you need to exercise, you shouldn't stay in bed so much." Doing things like that - it's just a great trust and a great honor having him there. I'm sure I wouldn't be alive today if it wasn't for him and his caregiving.
I joined a support group in July 1993. Dana Landers at Church of the Valley decided it was time to have a support group for people that were affected by HIV and AIDS. We knew we needed a support group because of the fear that was out there and rejection by most people and most churches against people with AIDS. We knew we needed something - a kind of way to come together - to lend support to each other. More or less telling the other person, "It's okay, you've got AIDS, but we're going to be there for you anyhow."
In the beginning, it was a very big step for the Church of the Valley to allow us to start an AIDS support group and to have people show up that were going to say, "We're going to be there to support you." Which we did very much so in the beginning by being there for each other, supporting each other emotionally, praying for each other, going to the person's house, fixing food for the person, cleaning up any messes or whatever had to be cleaned up in the beginning. Taking people to doctor's visits that didn't have the strength to make it there by themselves.
We were very much a very supportive group and we still are to a great extent. The only thing is the medicines are stronger and people are healthier now. We have a brighter outlook. It's mainly been because of the support group and the emotional support that we have been given there. In turn, by us growing stronger through that support, we've been able to go out and be caregivers to others while we ourselves are still sick be able to give emotional support to people even outside the AIDS support group.
It's a little bit like a bank, isn't it?
You know, it's like, you can't imagine at first because all that you can think of first is that you need the help, but after you've received so much love and help from the people in the group then you feel built up, you feel more confident. You feel like, "Hey, I'm okay, I'm going to make it. Then you're able to go out and use that strength that you found in the group to help other people, as we did today at the hospital. It's really gratifying to know that you're not where you once were, and that you're now thinking of other people and what they're going through more than what you're going through.
I think that just about everybody comes into the group as a receiver. They're there usually because they've just been diagnosed with AIDS/HIV, and they're frightened, they're scared. The first inclinations, the first thoughts are, "I've got a terminal disease. I've probably only got six months to a year to live and I'm panicked." By being there and being in the group, we're able to show them, because we've got people there that have been diagnosed in the mid and early eighties, "Yes, you've got a disease. Yes, it may be terminal at some point, but you've got a long ways to go. It's not the death sentence within a short time that it was six years ago. So, like I said, it's a joke in a way but, "Yeah, you can buy the eight-hour tapes, you're going to be around for a while. Or when I was growing up it was the LP's - the thirty-three and a thirds.
How many people in this support group have passed on?
Since the Protease Inhibitors came out and the cocktail, we have had one, two, three. Prior to that there was probably, between 1993 and end of 1995, there were probably five or six altogether.
You've been at their memorial services. What's going through your mind when you're there?
I think part of it is guilt. Why are they gone and not me? That's part of it. And part of it is that you feel glad that you survived. It is emotional -- a lot of sorrow because you know that that person was a part of the group and they're never going to be there again.
How can a community support people with HIV?
People with AIDS just want to be accepted. We don't want to be pitied or anything of that nature. We just want to be accepted that we have an illness… that we're human beings too and we want to be treated as such … not second class citizens.
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