Education essential to prevent AIDS, victim says

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Nolan Mamakeesic is not much different from you.

He's 26 years old. He grew up in Sandy Lake and left there to go to high school in Sioux Lookout, Ont. when he was 15 years old. He got into a minor scuffle with the law soon after and didn't finish Grade 12. He likes the outdoors, but after getting a taste of town and city life, he finds going back to Sandy Lake a little stifling.

Actually, there is one thing different about Nolan Mamakeesic. He has tested positive for HIV - the virus that causes AIDS. He is the first known case from the Sioux Lookout Zone.

He is not sure where he contracted the virus, but he guesses it was more than six years ago when he was living in Toronto. It is almost certain that he contracted the virus from a sexual partner, since he is not an intravenous drug user, and he admits he was very sexually active.

"Sometimes it was a different person every night. I was young, I was stupid, I didn't use condoms. I knew about the risks, I guess, but when you're drinking and on drugs, you don't think about the risks.

"Sometimes it was like I'd wake up beside someone in the morning and say 'Who are you? Where'd you come from? Did we do anything?'

"I did get a little heavy into liquor when I was in Toronto, and drugs. Heavy drugs. I never did IV drugs. I did nearly every other drug you can name, you know, cocaine, acid, crystal.

"From there, I came back to Winnipeg 'cause I was getting too heavy into the drugs, too heavy into the smoking and I was doing all kinds of crazy things in my life. You know, things a normal person wouldn't do - just to get drugs, get smoke, get money for liquor...."You know, you sell your body for sex, for money. All kinds of crazy things. So, it came to the point where I realized my life was going downhill fast."

Nolan moved around quite a bit after he left Toronto. From Winnipeg, back to Sandy to look after his bedridden grandparents, back and forth between Calgary, Winnipeg and Vancouver. It was over the Christmas holidays in Winnipeg in December 1990 when he realized he was sick.

"I was diagnosed in January 1991, right after New Years. I was sick for about two months. I couldn't eat because I had thrush in my throat - I couldn't swallow anything. I ended up in the hospital and then I had said, 'There's got to be something wrong here - I've never had anything like this before.' I knew some of the signs of HIV, so I asked the doctor would it be possible to have an AIDS test."

Nolan did test positive for HIV and was referred to an AIDS specialist in Vancouver. He says that when he found out, he didn't know what to do. He set off on a three-hour walk in the rain. He stood on a bridge for hours, just thinking.

"I thought maybe about jumping off - I didn't know what I was doing. When I'm close to water, I can think. I can close off the rest of the world."

One of Nolan's greatest concerns was telling his family and friends. He had already had friends die of AIDS and had seen how their families and communities had treated them.

"I wanted to talk to someone about it but at the same time I didn't want to because I watched three of my friends die. I was there when they died in the hospital - without family. One guy - his name was Joey - they didn't even want his body to be buried on the reserve, Nelson House in Manitoba. He had to be buried by the Salvation Army in Vancouver.

"I remember one day he had asked me to phone his sister. So I phoned is sister. I said, 'I'm a good friend of Joey's and I'm phoning from the hospital and he's not doing too good and he really wants to talk to his mom.' and She said, 'His mom doesn't want anything to do with him.' Just like that. I couldn't say anything after that.

"He (Joey) didn't start out with HIV. It just became full blown AIDS immediately. His got very sick very fast. His body literally deteriorated in front of us. He weighed about 180 pounds and within weeks he was down to about 90 pounds. He wasn't eating anything. He lated for about six months. He died in June, just after my birthday, and he was diagnosed just after Christmas.

"I learned a lot from Joey. He and I sat and talked. I learned how to cope with my illness by talking to him. Even though he didn't know, he wasn't scared to talk about it."

Nolan finally told his family after coming down with pneumonia over Christmas in 1991 - a year after testing positive for HIV. then, he had moved back to Winnipeg to be closer to his family. He says he was at "death's door" with double pneumonia, and both his natural and adopted families were with him in the hospital (he was adopted by Ernie and Elizabeth Mamakeesic when he was three months old). His family was supportive from the beginning, he says.

"I think I'm very much blessed to have a family so supportive. I really expected to be treated the same way my friends were. Because my mom works with health (Elizabeth Mamakeesic is a community health representative in Sandy,) I think she knew."

Remarkably, the pneumonia Nolan came down with was not PCP, the often fatal pneumonia most commonly associated with AIDS. AIDS victims do not die of 'AIDS', they die of AIDS-related diseases, since the body's immune system is too broken down to fight infection.

His health varies from day to day. He is taking AZT, a drug which lessens the effects of AIDS, and sleeping pills because, he says, he has too much on his mind to fall asleep at night. He gets tired very easily. He used to like to ski, but has had to give it up. His appetite is quite healthy, though he is very thin. But, he says, he has always been thin. When he was sick in January, he was down to 98 pounds, but he has brought it back up to about 166 pounds.

Now Nolan and his parents are interested in AIDS education. Nolan is considering a suggestion from Sioux Lookout for NNADAP workers. He speaks candidly and articulately about his illness as well as his homosexuality.

"I'm glad everybody knows now. In Sandy, I didn't want to play arole for anyone. I wanted people to know me for who I am," Nolan says.

"Some people said to me, 'We heard you're gay,' and I said, 'Yeah, what difference does it make? The only difference is that now you know. I'm still the same person that you knew.' I still get the odd rude remarks, but on the whole, people are supportive."

Nolan has offered to Sandy Lake band councilors to go over the radio in an attempt to clear up some of the myths and rumors going around about himself and the disease. He expresses some anger when he describes how the community found out about his illness. Apparently, a Sandy Lake band employee was at the hospital in Winnipeg when Nolan had pneumonia.

"We had a meeting with the doctor on the Monday. On Sunday, this guy went on the radio and said 'He has full-blown AIDS.' He could have waited 'til Monday to get the facts straight from the doctor. Monday, my doctor had received a phone call from the Sioux Lookout Zone Hospital asking about me. It put the whole community in complete chaos. My dad had to get on the radio and say 'It's just HIV'.

Nolan's parents eventually organized an AIDS workshop for Sandy Lake. About 50 people showed up and Nolan says he got a few phone calls as soon as the workshop ended, with friends and even some strangers offering him support. The Roman Catholic church offered to pay to bring him home from Winnipeg any time he asks. The group also sent him a huge card signed by all the participants saying,"We love you and we're with you." Nolan has it up on his bedroom wall now.

"That workshop in Sandy - I thought it was good they were willing to talk about it, to learn about it. It meant a lot to me and my parents, but it's too bad more people didn't turn out."

As long as he is healthy, Nolan thinks he'd like to possibly travel around to northern communities, educating people on the facts about AIDS.

"It has got to be talked about. A lot of people come out from the reserve, they get drunk and pick up women, men. The don't know what they're bringing home. My mom (a community health representative) talks about condoms, and people laugh at her. They think, 'It's not going to happen to us'."

(Author Leanne Larmondin of Sioux Lookout in Ontario was chosen as the National Indian AIDS Media Consortium's World AIDS Day Writing Contest winner).