Please introduce yourself.
My name is Maxwell Lawton. I live in Washington, D.C. I am an artist, professionally trained. I graduated from Virginia Commonwealth University School of the Arts in Richmond, Va. I'm a painter. I moved to Washington, D.C., to study at the graduate level at Wesley Theological Seminary's Center for Art and Religion, and it was there, in my second semester, that I fell ill and was diagnosed with end-stage AIDS.
What year was that?
Photo by Edward Grieff
January of 1992.
You were how old?
Can you describe your diagnosis in more detail?
Well, I came out in 1980, and was celibate before then. When I moved to Richmond to study art, I took an HIV test in the '80s but it came back as a false negative. Then it was a one-part test, so I just stayed with that. I never went back for other tests. So when I moved to Washington, my HIV had continued and progressed into end stage. So when I entered the hospital I was at the end, basically -- on my deathbed. The doctor said I had advanced PCP [pneumocystis pneumonia], a T-cell count of 0, and was HIV positive; and they had never seen anyone survive that. So they told me to put my house in order and call my family. They said goodbye. I was left in the hospital to die, basically. I had gone from weighing around 155 to 115 in a matter of weeks. I literally looked like a skeleton. They were weighing me every hour. The medicines were not working for me.
What regimen were you on at the time? Do you remember?
Initially, I started out with Bactrim [generically known as co-trimoxazole for the PCP], but I was allergic to that, so they put me on IV [intravenous] pentamidine [Pentam].
None of that was available. Well, just AZT was around at that time that I know of. But I stayed in the hospital for three months, actually. I eventually was able to recover from the PCP. So when I left the hospital, I had already entered graduate school in Washington, so I just continued my studies, even though I had wasting syndrome and an AIDS diagnosis, and no one expected me to live. I looked like a walking skeleton. You could see my bones sticking out. It was really hard; it hurt to sit down because my butt had nothing there.
What exactly is wasting?
Well, your body turns on itself, and eats away muscle and fat, I guess to survive. There wasn't much they could do. But I got hooked up to our local AIDS service organization here in D.C., called Food & Friends. They made daily food deliveries. I ate a lot, as much as I could. I went into studies for d4T and others. I developed side effects. The next year, though, I had lots of OIs [opportunistic infections]. Three months after my original hospitalization, I developed a type of tuberculosis in my neck; it was called scrofula. So I was in the hospital again. Then in early 1993, I had a recurrence of PCP. I was in the hospital again.
And then, that same year, I was in a trial at Georgetown University Hospital for oral ganciclovir [Cytovene], to see if it could be used as a prophylactic to prevent CMV [cytomegalovirus] retinitis. But an opthamologist found early in that trial that I was actually starting to develop CMV in my right eye, so they switched me from the preventive trial to a ganciclovir trial for people with active CMV. Out of 300 patients, I was the only one that it worked for. I think it was because I took it exactly every eight hours, and they said, "Just take it three times a day." I said, "What's the best way to take it?" They said, "Well, we don't expect you to take it every eight hours; it's too much to ask." I said, "Well, it's my vision. I'll take it exactly every eight hours."
When the study ended, they had to continue giving me the meds, so they opened up a study just so I could receive the medications. At the same time, I also decided to start going to the gym and working out, against my doctor's advice -- he said I would lose T cells. But I didn't have it to lose, so it didn't matter. So, being an artist, I bartered with a personal trainer and worked out; and in one year, I gained 20 pounds.
Presumably that was muscle.
Yes. It was just muscle. So my doctors put me on Marinol [known generically as dronabinol, a synthetic form of THC, the active chemical in marijuana] and a regimen of [synthetic] testosterone and Deca-Durabolin [known generically as nandrolone decanoate, an injectible anabolic steroid], as a cycle for 12 weeks. With that, I was able to gain more weight. After three of those cycles I [was] up to almost 165. But when I would stop the cycles I would lose weight again.
So the Marinol is for ...
It gives me an appetite. It also helps me not to have nausea. And it makes me feel good, which is important when you're facing something like AIDS. Regardless of what they say -- that medical marijuana doesn't work -- then why do they make a synthetic version of it? But regardless of the politics, I take Marinol and it works for me.
Plus the testosterone and the other drug, a steroid?
Yes, an anabolic steroid, Deca-Durabolin.
How do they work?
I basically had the same workout routine as a competition bodybuilder, and I would work out with them at my gym. It's called stacking; you take them at the same time and you can gain muscle real fast, almost twice as fast as the normal working out. But you have to be careful, though, because you don't feel pain; you can injure yourself.
But after three cycles, my doctors decided it's better to save my liver, because that's one of the bad side effects of steroids. So now I'm just doing testosterone daily, AndroGel, which is a gel I put on my stomach. I still take Marinol. I go to the gym about three, four times a week, and we work out with weights, resistance training to build and maintain muscle. I do very little cardio, because my doctors want me to have some fat. So when I'm sick I have something to lose instead of muscle.
Do you feel, with that regimen of exercise and the anabolic steroid and the Marinol, that you have pretty much stabilized now? Well, at a certain weight and with a certain appetite?
To a certain point. If I stop taking Marinol, I'll lose weight -- I know this because I tried stopping. If I stop taking the testosterone, I'll lose weight. One thing I've learned is, when taking testosterone, you really have to work out for it to work; otherwise it's a waste.
Why is that?
I don't know; something about the way it's metabolized. About 30 minutes into a workout I can feel it in my system, just kicking in. Then I don't want to stop. So I just have to go slower, and breathe slower. So, when I go to the gym, I go in very mindful that I'm going there for a purpose. It's a sacred event to gain weight and maintain it. I like to go at a time when there are not a lot of people. Since I'm on disability, I can go in the morning, between the rush hours -- because people tend to stare at me when they see me, because you can see all my muscles. My skin is so thin on my legs and my arms, you can see, when I'm working out a certain area, you can see the muscles firing and you see all the striations.
Your skin is thin because of the lipoatrophy, or the wasting?
Well, I think it's thin because of both.
You don't have that little layer of subcutaneous fat?
No. When I first had melanoma, about five years ago, it was on my thigh. When the doctors cut in to take it off, they said there was no fat there, even to be able to pull the skin together. They were really surprised at how there was just nothing but just skin, and then a layer of muscle.
The doctors originally cut it off and sent me on my way without further tests. But recently they found that the cancer had metastasized into my lymph glands and my groin, and I had to have surgery.
Presumably, at a certain point in the late '90s, you were put on an anti-HIV med regimen that began to control your virus and your CD4 cells improved, yes?
That's right. I only went on AZT and Crixivan [indinavir], not three -- just those two drugs. So I called it a "highball" instead of a "cocktail." My T cells very slowly began to climb. You know, they went from zero to 12, and then a few months later, they were 24; and a few months later they were 50. Eventually they were 100, and eventually 200. At that point, I was able to stop prophylactic medication.
For the PCP and other opportunistic infections?
Right. But in the meantime, with CMV, before I was able to stop it, I was on the oral ganciclovir to control CMV in my eye. When I'd have diarrhea, it wouldn't work. The CMV advanced, and I lost one third of my peripheral vision in my right eye. So they had developed a new ocular implant, which delivers medicine directly to the infection site in the eye, which only lasted for six months; that was the life expectancy. Well, I had three of those implants because I kept living. By the time the third [implant] was put in, my T cells had risen enough so I no longer needed that type of therapy. The three surgeries for the implants caused cataracts. So the CMV is quiet in my eye, and I haven't had any more opportunistic infections, with the exception of weight control, but I won't regain my lost vision.
Once you have AIDS wasting, is it your understanding that you always have it? Or does it stop once your immune system recovers enough?
I'm not sure. My immune system has only come up to a certain point. The highest T-cell count I've had is 400, and my viral load has been undetectable for a few years. So I'm one of those people in that gray zone. Some people, they can say that they have gone way high, and they're doing much better. I have to be very careful not to drink tap water, to pay attention to what I eat, to eat a lot. I drink about a gallon of water a day. That helps metabolize medicines, and it helps with building muscle, as well.
Just drinking water, even.
Yes. When I was on Crixivan it was important to drink water so I wouldn't have kidney stones, which is a side effect. But now I've just learned to love to drink it.
Do you drink bottled water, or seltzer water, or what?
I only drink purified water. Especially here in D.C., we've had several times, EPA [Environmental Protection Agency, which enforces safe drinking water laws] warnings that there was poison in the water.
What's your favorite brand?
It's made by the Coca-Cola Company. It's purified water, and they add minerals back into it. Then I also use a Pur water filter on my water faucet. But I never drink any tap water.
Even at the gym?
Oh, no. At the gym, I'm very careful. I don't even take a shower there. I come home and shower. I have a partner of nearly 11 years, who's HIV negative and healthy -- he's a bodybuilder. We know people who have picked up a resistant staph infection from the gym. So I come home, wash my clothes and shower at home. Plus, when I would shower, people would stare at my ass because of all the striations. I was able to rebuild my butt from being flat to being round again and it's just muscle; it's hard as a rock. I was able to do it by doing lots of legwork, or exercises specifically for building up your butt, which is one of the largest muscles in your body. But it's always the first to go.
So, you had AIDS wasting, and then at a certain point, you developed lipoatrophy, as well.
When was that and what was it like?
Well it was not a real dramatic change, but at some point the doctor said, "You no longer have AIDS wasting, but you have lipodystrophy." Then later they said it looks like I don't even have that. But it's still obvious that I have it on my arms and legs -- extremely thin, or no fat at all.
Is it different from what it was like when you had AIDS wasting, or does it just seem like another aspect of that?
It seems to me like it's just a continuation, another aspect.
Do you have facial fat loss?
I did. However, I don't any more, and I don't know why. It may be because part of my diet is a lot of fat. I'm kind of backwards from most people. I eat fat. I eat fried chicken. I eat a lot of things people who are trying to lose weight would avoid. I eat it because I figure, well, I need some body fat; maybe this will help. And apparently it has. I consult with nutritionists, and they agree that's a good idea to do.
Can you tell me: Were you on any of the following meds -- d4T?
As a study patient.
For how long?
Just a few months. I developed neuropathy and I stopped.
d4T is implicated as the main cause of lipoatrophy. Have your doctors said anything about that causing it?
No. I was only on it for a short period of time, less than two months.
AZT or ddI?
I was on AZT for eight years. I was never on ddI.
When you were first noticing the lipoatrophy -- let's say, in your face -- was that after you had recovered to some extent from the AIDS wasting?
No, that was actually while in the hospital, and for years afterwards. That was what people noticed first about me, was I looked like a skeleton head. But eventually that corrected itself. The more I went to the gym, the more people would say, "Hey, wow; you're really cut and vascular. What drugs are you on?" You don't want to get on these drugs. Because there would be other people, bodybuilders, wanting that. Because it's the result people want; they want to look all vascular and cut. That's sort of a side effect for me.
Do you look like a bodybuilder?
Yes. I look great.
Is that true?
Are you extremely muscular?
I weigh 160, and it's all muscle. It really shows up because I have such thin skin. Other people in the gym have a normal, healthy layer of body fat. They don't look as cut or muscular, even though they are.
Part of the reason you have worked so hard to develop the muscle is to compensate for not having that layer of fat that was taken away from you. So you have no other option, in terms of cushioning your bones.
Exactly. Well, that and also to buffer me for any future bouts of illness. So I would have something to lose if I were to be sick. Then I would start the process over, to regain and build back up again.
You haven't been sick for many years now, right?
I've been really very healthy, and sometimes I'm thinking wow, this is something. I'm really healthy but I know I have AIDS. I don't say that I have HIV because I know that there's a difference between having HIV and having AIDS. I'm coming from my deathbed to my current state of appearing in good health. Yet I just was diagnosed with malignant melanoma for the second time, this time on my scalp, which they found also in my lymph nodes. They said it's stage III melanoma, which might -- and probably does -- mean another battle of illness, another storm. I will likely lose some weight, but I see myself coming through it and gaining weight again because I have been through a lot. I have been through hell and high water. I have been through the storms, and I have learned how to find a balance and not give in to fear, but to have hope.
How did you learn to do that?
Well, I learned how to pray. That's part of it. My spiritual life was enhanced. I'm not saying that I have a lot of faith, that's why I'm here. But I am saying that I have learned that there's more to us than our bodies, and I have learned a lot about grace -- not just in the Christian perspective, the cosmology I grew up with, but in any kind of spiritual construct. So I add that to my combination of therapies; not just these medicines, but also working out, staying in a prayerful state of mind, and living a healthy life. Love, too, I think, makes a big difference in my life.
The love that you feel for your partner?
That he feels for you.
Yes. In a lot of ways, I feel that so many of my friends who died -- and there are so many -- they all got together and sent me this wonderful, beautiful man into my life. There's something about love that heals.
Can you describe a little bit what you mean by a prayerful state of mind?
Well, I find that I pray a lot. Normally, I wouldn't. I'm not the kind of person that would say I'm religious, but I learned to pray over my meds before I take them and send them to work before they enter my body. Some people might call it visualizing. When I go to the gym, I pray on the way. I pray for a parking space, and there's one opening up, right when I pull up. I have just learned to expect the unexpected. And it happens.
As an artist, you're visual. Is that part of it?
I think, possibly. One of my mentors told me a phrase to keep in mind. It says, "Worry is misuse of the imagination." So I turn it around and I use my imagination. Instead of worrying, when I'm working out, I imagine that HIV is being under control. I imagine, when I'm taking the medicines, and I pray that they work better than they were designed to, and that the side effects will be taken away. So I just find that I pray often. That's what I mean. Then I walk my dog. He puts me in a whole other realm, because staying in the moment is extremely important.
I think that's what I mean by a prayerful state of mind. It's staying in the moment and not jumping ahead, and worrying about all the "what ifs." That's because I can only deal with the information that I know is in front of me. Before I go to the gym, I think about what I am doing today. Okay, I'm doing back and arms. Then I think about those things, and how I'm going to do my routine. Then I come home, eat food, drink a lot of water, and play with my dog. I make art. And when I'm making art, it's very interesting. Something happens. I guess when we're creative we release some sort of creative energy in our bodies. I was never one for art therapy; but I've found that the more art I make, the better I did. I never wanted to be, to have, AIDS influence my artwork but, since I'm an artist, we paint from our experiences. AIDS crept into my artwork, and then I began to address it directly.
Well, I started just painting my journey with AIDS. I was invited, in 1993 -- while still [having] no T cells, having CMV in my eye, on experimental medication -- I was invited to Cape Town, South Africa, to repaint an image I had done in D.C. for Archbishop Desmond Tutu. A painting I call "Man of Sorrows: Christ With AIDS." A painting of Jesus as an AIDS patient, sitting in a hospital, dying of AIDS. That's the way people die these days. They don't die on crosses; we die in hospitals.
Is your art available on a Web site, to be seen?
I don't have a Web site, but if you search for my name in Google images, you'll see several images come up.
Is your art part of Visual AIDS?
No, but I intend to be as soon as I'm able. But I am also registered with Very Special Arts, here in Washington. It's part of the Kennedy Center. But I don't have a Web site because I'm not sure how to set one up. I'm a painter, and that's totally different. It's far right brain thinking.
What kind of painting is it? What materials do you use?
I use canvas and oil and acrylic. The last two years, my paintings have really become more alive than ever. My color palettes are just vivid and lively and full of hope. I suppose that reflects where I'm at in my journey.
I'd like to know a little bit more about the melanoma. Two questions: One, can you describe how you feel physically these days?
I don't feel sick at all. I feel fine. But I find I'm calming down my friends, who are freaking out. With the exception of the fact that I just had all this surgery on my head -- I still have some stitches there.
You had a melanoma removed.
From my scalp, in the hairline above my ear.
Can you explain what melanoma is?
Well, it's the rarest and deadliest form of skin cancer. It is usually caused from being in the sun, but they have noticed about a 15 percent increase in melanomas [in people with HIV]. [No one is] sure yet if it's related to HIV, or not. However, there is a specialist, an oncologist who specializes in HIV and melanomas; he is now my oncologist. I'm now working with a team: the oncologist, a plastic surgeon who specializes in people with HIV, and my regular physician, who is an infectious disease specialist.
When did you have it removed?
Almost three months ago.
What was the recovery like?
Well, I had complications. It's supposed to be an outpatient surgery event. Pneumonia developed in my lungs so I was in the ICU [intensive care unit] for a couple of days. They asked my partner if they should put me on life support and try to extend my life. He said, "Yes, by all means, do." The next day I was doing better, and I was in a regular room. The following day I was able to breathe normally, and they released me.
You were in the ICU and you were on life support?
I was in the ICU, but I was not on life support. They were going to put me on life support, but I recovered without it.
All this, because you had pneumonia?
Well, they weren't sure if I had a collapsed lung or pneumonia or what, but I had a very high temperature, very high blood pressure, and I wasn't able to get enough oxygen to sustain me.
Were you unconscious?
They had given me sort of amnesia medicine. I was on morphine, too.
What do you mean?
Well, it's retroactive amnesia, so you don't really remember the surgery, but you're able to cooperate when they tell you to move this way or that way. So my partner was there for most of it, and he had vivid memories of it, unfortunately for him.
How sick were you?
Apparently I was extremely ill, because when I went back the following Friday, after being released on Wednesday, the doctor said, "Well, I'm really surprised to see you." I thought, oh, my dear. I don't remember how bad it was. But I could tell that my partner was totally traumatized by it.
You've already recovered from that and you're back at the gym.
Yes. I'm like a yo-yo.
So you just had the second melanoma removed?
Right. There were some present in my lymph nodes in my neck. An MRI [magnetic resonance imaging] showed cancer in my groin, too. So I had surgery in April to remove the melanoma on my scalp, and had surgery to remove cancer on my groin in May. I'm awaiting surgery on my lymph nodes in my neck, as well.
Is there a possibility that the melanoma is related to the HIV, or the HIV drugs?
I've talked to several people about it and there's a sense that it is related to HIV, but they don't know how, because so many people are experiencing melanomas with HIV. It's happening more and more. I think The Body even had a recent article about that, that I read about a month ago.
You've had quite an introduction to HIV from the time that you were diagnosed on your deathbed. So something like lipoatrophy, which is essentially a very disturbing condition, but not life threatening, must not seem that serious to you.
I've learned to live with and to manage it by taking Marinol and testosterone and working out and eating and eating and eating. But it's an effort on my part. If I sat back and did nothing, I would likely shrivel up and die. But I choose to be actively involved in my health care, and be my own CEO of my health care, really.
It seems like that's your approach to all parts of your life.
It has become that.
To people who are experiencing lipodystrophy, or wasting, or lipoatrophy -- there's always hope. Looks are only on the outside. It's what's on the inside that matters. Life inside manifests itself on the outside. We have to just keep the hope alive, and keep at it.
What do you mean when you say that life on the inside can manifest itself on the outside?
I believe in healing, but I think healing doesn't happen, necessarily, spontaneously. It happens somehow on a spiritual level, or maybe a mental level. Eventually our bodies catch up with that. But I do my part, by taking my meds, going to the gym, and eating, and doing all the things I can to make it happen. I also pray. I tend to my spiritual self, whatever one wants to call that.
Do you meditate or do yoga, or anything like that?
I meditate. I don't do yoga. But I sometimes do Reiki. And well, making art is a type of prayer and meditation. I also garden. I do a Native American ceremony, smudging [a cleansing and protection ritual in which herbs are burned]. I have a sacred circle in my backyard. So, yes; I do a lot of meditating and what we call cleansing work.
What is your partner like?
My partner is the opposite of me; he's a scientist. He's very supportive. He doesn't always understand what I'm talking about. I don't always understand what he's talking about. But somehow we meet in the middle.
What was it like when you guys met?
Oh, it was like love at first sight. I looked into his eyes, and he looked into mine, and I saw intelligence. Within the first few minutes, I told him. I knew we were going to be together, and I said, "Listen, you need to know. I am a person living with AIDS, and I take a lot of medicines." He said, "Oh. Well, I have depression, and I take a lot of medicines." I thought, "Oh, well that didn't scare him."
If that doesn't scare him ...
Exactly. Well, we're going on 10 and one half years. We'll be in our eleventh year together in the fall.
Where did you meet?
We met at a dance here in D.C., at a foam party. We were both there too early.
Is a foam party where you wear nothing, or very little?
Well, you start out with very little.
... and you get to nothing?
Yes, you get to nothing. But the foam is so high; all you see are heads and shoulders.
Wow. Well, thank you very much.
Get your questions answered at The Body's Ask the Experts forum on facial wasting!
Talk to others about lipoatrophy at The Body's Community Center.