The Positive Side

Spring/Summer 2005 

Not Your Average Joe

Pop icon and artist Joe Average on his most challenging masterpiece — his health

Interview by RonniLyn Pustil

JOE AVERAGE: I was diagnosed in 1985 at age 27, but I’m 99% sure I contracted HIV when I was 25. When I asked the doctor what it meant, he said: “You could last six months, you could last a year, five years, 10 years or forever … we just don’t know.” And I said: “I’ll choose forever.” I’d known a few people who were living with AIDS or had died from it, and one thing I figured out, just from watching people, is that if I let it take over my life it would. So I decided to live as normally as possible.

About three years later, I was working a crappy job and was let go. I thought, “If I’ve only got six months to live, do I want to spend it collecting unemployment insurance or welfare, or do I want to spend it doing something I like?” I decided to make a stab at living off of art. Art was something I’d done since I was a kid but had never taken seriously. It was a hobby, not a way to make a living.

I thought of it as urban camping: If I found myself alone in the middle of the woods, I’d figure out how to survive. So I took that approach and started making art and having little shows in my apartment. I priced things according to my rent so that if I sold a piece I could pay a month’s rent. HIV saved my life in that I decided to make art my life.

And since then you’ve been living off your art?

AVERAGE: Yeah. But I haven’t painted for the past five years. Someone asked me when I decided to stop painting. I didn’t decide to stop painting — things just got so intense. My mind was so full. At one point I had timers everywhere because I had to take some drugs every two hours with food and some every two hours without food. It was like air-traffic control.

My life became so complicated that there wasn’t a clear area in my mind. Sketching is an organic process. My brain became so focused on surviving that the natural process of sketching kind of screeched to a halt. It’s hard to be inspired when you’re dealing with life and death stuff, horrific side effects and fear.

Not painting has lowered my self-esteem and hurt me financially. I had the foresight when I had chunks of money to produce lithographs, limited edition prints of my stuff, which is what’s been keeping me alive.

You’ve donated a lot of your art to charity.

AVERAGE: As a kid I used to watch telethons and I always wanted to make donations like the adults. When I found out that I could donate a piece of art and it would generate money, it became my way of helping. It’s a win-win situation — I get to help people and people get to see my art. I donate mostly to AIDS charities and stuff involving children. The canvases fetch a lot of money and the prints usually raise about twice their value, which is a great feeling.

I did a self-portrait, Me. I was going through a lot — the side effects were intense, I’d just healed from a broken collarbone, I had to have surgery because cysts had developed on my penis. It was very traumatic. So I sat down and did this drawing of myself because if there was one more blow I was just going to crumble. I kind of overdrew the lines that I knew had started to weather themselves into my face, like a road map of my journey. Then I drew out from the wear marks to complete my head. I did it as stained glass to create that sort of fragile feeling. That was a self-portrait of me ready to crumble. It was my therapy at the time.

Do you think your art has helped raise awareness about AIDS?

AVERAGE: Art is open to interpretation, that’s the beauty of it. I’ve been invited to many elementary schools where the teachers have the kids study my art. Kids are so wonderful! I’ve left classrooms after two hours and the kids were saying, “We’re coming to the AIDS Walk this year, Joe!” I talk openly with them about it.

I did a few images about AIDS — one called My Thinking Cap (Life with HIV) and one called Ray of Hope — when I first started the cocktail because I wanted that out of me a little bit. For the most part though, my images aren’t so much AIDS-related — they’re more about how the child in me wants to see the world: happy and with love. There is so much communication with colour. Over the years I’ve learned how much of a language colour is. Colour creates joy in me and it creates joy in other people.

There’s a little thing I’m very proud of. For me, it’s a reason to keep going with art. I’ve had parents come up to me and thank me. They say that when their child is crying, they’ve figured out that the only thing to make them stop is to carry them over to my painting or print and hold them up in front of it. And the child stops crying. I’ve somehow managed to communicate not only to parents but to babies.

What’s your favourite piece?

AVERAGE: That’s like asking a parent which is their favourite child. There are so many for so many different reasons.

The Kitchen Sink

Let’s hear a bit about your treatment history.

AVERAGE: I’ve never been hospitalised. I went for six or seven years on no drugs, and then my doctor suggested AZT — it was the only thing there was back then. But everybody I knew who was on AZT was dropping like flies, so I said “no thank you.” In the early ’90s, someone came up to me and asked how much I weighed. They said I looked like a skeleton. I’d dropped down to about 115 pounds. It actually timed out kind of nicely because it was right around the time when the first cocktail came out. I said, “OK, I guess this is the time,” and I went on AZT, 3TC and d4T, and it helped. I’ve been on cocktails ever since.

How many different combinations have you been on?

AVERAGE: Well, I won’t say everything, but everything my body can tolerate.
I became resistant to almost everything about two years ago. My CD4 count was hovering between 50 and 100. And my viral load was off the chart. We were waiting for a new drug called T-20 to come in. It’s very expensive and it took some time to get it. At one point my doctor pulled me off everything because the T-20 has to be taken in combination with other drugs, and if I’d stayed on all the drugs I would have become resistant to them all and the T-20 would have been useless. So he pulled me off everything for about six months and we just waited. In September 2003 the T-20 finally came in. I’ve been on it ever since.

What happened when you were off all the meds?

AVERAGE: I was very anemic, but fortunately I didn’t get anything. I stayed very careful. I was like the boy in the plastic bubble, without the bubble. I avoided going places and shaking hands with people. I was really wary to go to functions or benefits that I usually go to. If I had to go, I wore a mask and latex gloves. I basically cut myself off from everything.

What other HIV meds do you take with the T-20?

AVERAGE: I’ll get my little pillbox. Let’s see: tenofovir, d4T, 3TC, ddI, saquinavir and Kaletra.

Everything but the kitchen sink!

AVERAGE: Oh, that’s a small one, only seven drugs. I’ve been on 13 before.

Thirteen HIV drugs?

AVERAGE: Yeah. Like, literally everything but the kitchen sink. I’ve been a guinea pig for many different things. My doctor has experimented with me with all sorts of therapies, including non-traditional things, just trying to keep me going.

A Tale of T-20

My Thinking Cap is a bald head with the brain sectioned out like diagrams of cuts of meat, and each section has different words like hope, love, courage, sex — what’s in the forefront of your brain to keep you going. The person has no nose; instead the pills 3TC, d4T and AZT are strapped to the head like a nose.

AVERAGE: There are a lot of things that have changed in my life, like my needle-phobia. With all the blood tests I’ve had over the years, I usually had to look the other way. I’d go completely white.

Now I’m doing T-20 injections twice a day. The day I was to start the T-20 my good friend Anne came with me to the hospital for moral support and to be an extra set of ears and eyes so I’d remember everything. I had no idea what was involved. I was told there was going to be a simple device that you just clicked. But when I got there, all these hypodermic needles were laid out. I had to learn on the spot how to inject myself. The thing about these injections is that they’re subcutaneous — and I have no body fat.

So what do you do?

AVERAGE: They had to figure something out with me. I have a tiny bit of body fat on my abdomen. When you look at me you wouldn’t think it, but when you squeeze it, it’s just enough. Traditionally, with subcutaneous injections, you pinch the skin and put the needle down at a 90-degree angle, like straight down. But because I have zero body fat, I pinch at my skin and go in sideways, almost transdermally.

In the same spot all the time?

AVERAGE: You have to rotate the injections. You can’t go into the same spot twice because it leaves a node. But now, because the areas on my body are so used up, I was told to just go where I can get the needle in.

The back is also a spot. So, Anne would come over at 5 a.m. and 5 p.m. and inject my back for me. She’d do that for two weeks and I’d do my abdomen for a week, and that went on for about two months, until she said: “Why don’t I come over every day and do your back? Save your abdomen for when I’m sick or have to go away.” She’s been a little trooper.

My abdomen is scarred from the injections. It’s so dense with the nodes that the T-20 doesn’t absorb, so it takes a long time to inject and is extremely painful. But when you’re finished the injection, the pain is kind of over, unless you put pressure on the spot or hug somebody … and seatbelts are a bitch. If you have an injection-site reaction, the place where you inject stays painful for a couple of days.

It’s living with pain but it’s living. That survival instinct in me is quite strong. It’s been a very challenging year, but it’s way better than not having an immune system. Now my T cells are at about 350 and my viral load is back down to undetectable.

The B Side

What side effects have you had from all the meds you’ve taken?

AVERAGE: I’ve had so many. One of the most frustrating was nosebleeds. If I leaned over to tie my shoes or pick something up, my nose would start gushing — sometimes for a half-hour. It was a drag because I work out a lot and I couldn’t go to the gym. I’m a biohazard — I couldn’t be hemorrhaging in public. After about eight months, my doctor figured out that it was the AZT in one of my drugs, Trizivir. He told me to stop the AZT but to continue taking the other drugs in the combination [3TC and abacavir]. Thankfully he found that out because it stopped the bleeding.

I was on Sustiva for just over a year. They told me that one of the side effects would be nightmares, which I got, but they didn’t tell me that the nightmares aren’t limited to the night. Finally, I was at my doctor’s one day and I said: “I think I’m losing it. I’m frightened. I want to kill my cats. I want to kill myself. I want to run people over with my car. I don’t know what to do. I think I’m getting dementia.” So I got pulled off that drug, but what a horrible year. I felt so out of control and like a danger to myself.

For the past four years I’ve suffered from folliculitis, an inflammation of the hair follicles, from my waist up and all over my chest, back and face. I went to specialist after specialist, and no one’s been able to figure it out. They’re like pimples, but they’re right on the surface and very itchy … I’m scratching 24 hours a day. There’s been an awful lot of pain that I’ve had to live with.

Ray of Hope is my hand holding the pills I was taking — 3TC, d4T, AZT (and Septra) — with rays coming out of it because it was the first cocktail.

And what do you do for the pain?

AVERAGE: I could take painkillers all the time, but I don’t want to. I want to be active. So I just deal with it.

And then there’s the lipodystrophy. I started losing my body fat about four years ago, which has been emotionally traumatic. You look in the mirror and you look like a skeleton draped in skin. It’s one of the reasons I started working out so intensely. Let me put it this way: I’m on my fourth butt. I lost it in the beginning. There was no fat left on my ass. It hurt to just sit down. I started working out with a trainer to get an ass back so I could sit on something, and also to create muscles, as a sort of armour. I’ve had to stop going to the gym a few times because of the nosebleeds and sometimes my anemia was so bad that I didn’t have the energy, so this is ass number four.

My self-esteem is pretty low. Before body-fat wasting people could tell you had HIV if you had Kaposi’s sarcoma on your face. But this is now the new face of AIDS — the sunken cheeks and skinny legs. When I meet up with people, I can see the shock in their face. People don’t recognize me on the street.

Your appearance has changed that dramatically.

AVERAGE: Oh yeah. It’s not just the fat wasting — it’s the meds, the pain, the wear and tear. It’s weathered me. I went from everyone saying that I was the youngest looking 35 year old they knew, to looking like Keith Richards on a bad day. I’ve got eczema and folliculitis. My face is cracked and scaly. Physically my body looks better than ever, but I’ve got Band-Aids all over my skin. My skin is rather angry all the time. I have very few mirrors in my house.

Are you angry?

AVERAGE: I live with anger all the time. Sometimes it’s at myself, sometimes it’s at the virus, sometimes just at the world. I shouldn’t say all the time, but I get very worn down from the constant challenges — and lonely. You can’t really explain to people what you’re going through because they can’t imagine. It’s a lonely experience. Even when I was in therapy, everything was so overwhelming for the therapist; he’d cry or shake his head, saying: “I can’t believe this.” A lot of times, I’d leave feeling worse.

Have you taken drugs to deal with all the side effects?

AVERAGE: Oh, yes, tons of different things — which is what kind of financially ruined me. I try not to look at what I’ve spent at the drugstore. But one year my accountant told me I spent like $10 grand just at Shopper’s Drug Mart — all for drugs that might or did help with something.

Now that I’m broke, I’m eligible for Fair PharmaCare in B.C., so fortunately I don’t have to pay for prescriptions. With Fair PharmaCare, if you’re in a certain income bracket, the government will pay for drugs that are approved. So, for example, now I don’t have to pay for my testosterone, which cost me like $400 every couple of months. And all the other things, like Septra and my antidepressants, are finally covered.

The Pill Box, Part II

AVERAGE: The moment they put me on the first cocktail, I said: “I’m not doing this without both sides being covered.” So I hooked up with my naturopath at the same time I started the drugs and I’ve been with her since. I take many supplements from her.

The One World, One Hope image was for the XI International AIDS Conference in Vancouver in 1996. The conference organizers asked if they could reprint the image I did in 1991 that became Canada’s first AIDS awareness poster. I said I wanted to rework it. The first image was just different faces, different people, and there was a heart in the centre to suggest that we’re all joined together as a race — because we are — and to get through this we have to do it with love and compassion. When I reworked it, I decided to change it into stained glass to show the fragility of humankind, the face of AIDS, and that we are all connected. I kept the heart in the centre.

 

The original image, from the AIDS awareness poster, got me a lunch date with Princess Diana. I was invited to the national capital to be one of 50 Canadians to dine with the royal couple at Rideau Hall. But the invitation didn’t include a plane ticket. When the owner of a local gay pub heard about it he had an idea to auction off the little painting that was the image on the poster. The auction raised enough money so I could fly to Ottawa. A local paper printed a story about the community helping raise money to fly me out, and Reuters picked it up. The title of the article: ‘Joe Average to lunch with Princess Di.’ Suddenly it was everywhere.

 

So I flew to Ottawa, and Princess Diana’s staff had clipped all these articles and showed them to her. After lunch the Governor General’s wife, Gerda Hnatyshyn, said the Princess wanted to talk to me. There I was — this little shy guy with a weird name and weird art — with the full attention of the Princess. It was one of the best moments of my life!

Like what?

AVERAGE: Let me go back to my pillbox. I take a multivitamin, alpha-lipoic acid, vitamin C, NAC (N-acetyl cysteine), co-enzyme Q10, selenium, Panplex for digestion, a fish oil combination called SEP EFA, SAT, DHEA, and Can Plex. Once a week I get an intravenous shot of a Meyer’s cocktail — a vitamin and mineral protocol with vitamin C, magnesium, calcium, B-complex, zinc and more.

Is your naturopath experienced with HIV?

AVERAGE: She’s learned a lot from me and she attends seminars. We’re so intuitive with each other. She’s really been there for me, like a therapist at times — I’ve sat and cried with her. She’s a godsend.

With all the drugs and supplements, I can’t begin to imagine how many pills you take each day.

AVERAGE: Probably about 40 pills twice a day.

How do you keep track and remember it all?

AVERAGE: I’ve got three pillboxes and I have all the names written down and how many pills I take. Every morning I get up and fill two small glass dishes with my morning and evening stuff. Then I take the morning dose, put the evening dose in the cupboard and do my injection. It’s become routine.

Angels in Canada

How often do you see your doctor?

AVERAGE: I go to my gp once a week for a testosterone injection in my butt, and a B12 / B-complex / folic acid injection in my arm. This is my second GP. My first GP rolled his eyes every time I mentioned the word “naturopath” and wouldn’t even allow me to have a copy of my blood work to show her. So I searched out a gp who was naturopath friendly, and that was great because it cut costs at my naturopath. Now my GP does the vitamin injections, and I leave the Meyer’s injection to my naturopath. I see my HIV doctor only when I need to.

How often is your blood work done?

AVERAGE: Usually once a month.

With all the meds you’re on, what about drug interactions?

AVERAGE: We’ve learned the hard way. But right now things are pretty good.

How are your eating habits?

AVERAGE: I have to force myself to eat most of the time. With some of the drugs I’ve been on, the nausea was so bad. Pot is the only thing that helps. Both my doctors fully recommended it. I try to eat as well as I can, but when the money is low it’s difficult. A Loving Spoonful provides me with seven frozen pre-made dinners a week, a loaf of bread and some fruit and juice. It helps out a lot.

You said you like to work out.

AVERAGE: I work out five times a week. I was working out on my own for a couple years here and there, but when I started losing the body fat I knew I needed some good advice and training. I’d saved some money as an “in case I get sick fund.” But then I thought, “Instead of having this money sitting there in case I get sick, why don’t I hire a trainer and get strong?” My trainer and I clicked immediately. He was very anxious to train me and I’ve been with him for over three years. About a year ago I was broke and called to tell him I had to stop. “December’s on me,” he said. He wanted to give me a little chance to get back on my feet. “Money’s not an issue. Let’s just make you stay healthy.”

Working out makes me feel alive. My trainer makes me laugh. He’s a friend now, and they’re hard to come by. In my 20s and 30s, all my friends died. I’ve met a few friends along the way, but I’ve become more introverted over the years. The gym gives me an opportunity to interact with people, it gives me something to look forward to. Both my doctors said hiring a trainer and working out is the smartest thing I ever did. It helps mentally as well, so, so much. I’ve risen from the ashes a few times. When I first hooked up with my trainer, he knew I was HIV positive, and I said, “I don’t want you to treat me any different. I want you to constantly challenge me.” And he does, so it makes me feel like I’m winning.

It sounds like you have some angels in your life.

AVERAGE: I don’t have many friends, but I’ve got a few really great angels. I approached my naturopath last year about the financial situation, and she said: “There are a lot of bare walls in my house.” So I did a barter with her — I gave her enough prints to decorate her office. It’s wonderful to get help, but I’ve tried to be as self-supportive as possible. It’s really hard for me to take something like that, but I’m broke. It’s just necessity.

To enjoy more Average artwork, go to www.joeaverageart.com

Photograph: © jamiegriffiths.com 2005
All images are reproduced with the permission of the artist © Joe Average Inc. 2005