This Positive Life: A Trailblazer Still Marches Forward
December 12, 2012
And now, talk a little bit about how the project has grown into other parts of the country, and other similar projects, as well.
Well, first off, we don't just print our own line of T-shirts. We do work for AIDS organizations all over the country. Broadway Cares/Equity Fights AIDS: Every T-shirt that they've done for every event, I think, for the last 15 years, somebody with AIDS has gotten a paycheck for doing ... which is astounding. They are just the most amazing people. Test Positive Aware Network, here in Chicago: Just hundreds and hundreds of supportive people have been there, buying designs from us, buying T-shirts from us, buying book bags from us, buying hats from us.
But also, we hooked up with the people from New York. The person who started Multitasking Systems in New York, which was the organization that this man was trying to tell us about; it was a temp service staffed by people with HIV and AIDS. They were started by one of Larry Kramer's doctors -- the woman portrayed in The Normal Heart. She realized that her patients who were professionals who could tailor their work hours to their physical abilities -- that they not only lived longer, but they had fewer incidents of opportunistic infections, and that when they did get an opportunistic infection, they rebounded quicker.
What's the first thing people ask when they meet you?
"What do you do?"
And if you're in that situation, it's like, "Well, I'm in recovery. I'm HIV positive." When somebody comes and works for us, they're like, "OK, I'm the shipping clerk at Nightsweats & T-Cells. I'm learning graphic design skills. I'm learning how to be a printer and I am in recovery. And I'm positive." It's like reclaiming your life. This is not rocket science.
Switching gears back to your own experience: I'm glad you brought up accessing meds. I'm curious how you access your meds now, and what your history with that has been. Did you get on ADAP?
I worked in a hospital for almost 20 years, and had good insurance -- but at first, I did not use it when I was diagnosed. My best friend was a doctor and we knew that our institution had made a decision that they did not want to become the AIDS hospital in Cleveland. So he was like, "It's not a good idea to use your insurance until you get really sick, and you're doing that $250,000 hospitalization. Then they won't be able to fire you. If they find out you're HIV positive now, they'll try to fire you. So you need to pay for this out of your pocket." I had just finished school. But I was working in the maintenance department in high school. So I was not a wealthy man -- you know, raising kids. My second job was working in the apartment complex I lived at, painting empty apartments. So I paid for some of my medicine.
I had friends in Toronto who couldn't take AZT anymore, but didn't tell their doctors, because they would smuggle it to friends in the States. I would smuggle it back. Sometimes I've smuggled drugs for other people back from Canada that people couldn't take anymore; they save them up and asked me -- and I was so flattered -- "Would you help smuggle this stuff back?" I'm like, wow. "Yeah, because it could save somebody's life."
In '94, I got very, very sick and cut back my hours at the hospital. I was working more with Nightsweats & T-Cells. I've called people from my hospital bed, trying to round up work for Nightsweats & T-Cells.
I ended up leaving the hospital, because if you wanted to go home at all, you had to go to see the doctor who takes care of the employees. I had since let them know I was HIV positive because, after a while, I figured out I would be broke and dead, so it made no sense. So I started using my insurance and then I came out to my employer.
They were very generous to me when I left. They let me extend my health insurance for 40 months after I left. That is unheard of. That is completely unheard of. I had somebody tell me that it wasn't necessarily them being generous, that I was the spokesperson for ACT-UP, so maybe they were motivated to be generous.
Generosity: What's in a name, right?
Yes. I am basically a volunteer with Nightsweats & T-Cells. But it is my life. It is the thing that drives me to get out of bed in the morning, gives me a reason to keep going. There are times that I am really, really not healthy. I still sometimes work from my bed. And it's OK. It's cool. It's good to get up in the morning and make a difference in the world.
My dog goes to the shop with me and sleeps under my desk. I'm dealing with artwork for the Tony Awards shirts, or something like that. That's awesome, you know? Elton John's autograph's on my desk; and I'm working with it to make it work on a T-shirt. Or one of the logos for one of the Broadway shows, or something. That's amazing.
What else do you do to keep healthy?
Exercise. I have a lot of problems with my back. A lot of long-term survivors with HIV are having really severe back issues. We tend to age much faster than people who do not have the same issues. We have bone density problems. I have had to have a series of five spine procedures in the last five years; pain blocker shots that are now not working. I'm going to see a spine surgeon on the 17th, when I go home from here.
But I worked with a physical therapist at Cleveland Clinic to set up a regimen of physical therapy that keeps me up and walking. It's healthy to be up and walking. You have to be up and walking to get [rid of] the toxins that these medications leave behind in your body. Being mobile is very huge; it's very important to get these toxins out of your body. So that's what I do.
I don't exercise like I used to. I can't run at all. I have other people in the shop who are taking my dog for a walk, because he's a 105-pound Rhodesian Ridgeback. I cannot; I can't even walk him anymore. It just hurts too bad. But I can still love him, and somebody else can take him for walks.
How do you access your HIV meds now?
Right now, I get my meds through Medicare Part D. ADAP helps from the state of Ohio. Like I said, now we have nobody on the waiting list.
I have a theory about all this, too. Because people are pissed off at the government, and they're saying the government is not giving enough money to ADAP. I think the problem is that the pharmaceutical companies are not giving us enough medication for the money we're giving them. I think we give them plenty of money. I think the government should spend more money on people with HIV. I think the government should spend more money on medicine, period, in this country.
We spend more on our military than all the rest of the countries in the world combined: 53 cents out of every tax dollar goes to support the industrial military complex in this country. You've got people pitting disease against disease in this country and saying, "Oh, well, it's AIDS exceptionalism, or entitlements."
Well, guess what? I've worked every day, sometimes 12, 16 hours a day, going to school at night, raising my children, paying my taxes. I am entitled to live with dignity. It is an entitlement. You're right. Entitlement's not a dirty word. I'm entitled to have medicine when I'm sick. I do a lot of good in the world. And even if I didn't, I'm a human being.
Do you have anything to say in closing that you'd like to share with those who are your viewing your video right now, and with our readers?
Just how grateful I am to be alive, how grateful I am for all the people who fought so hard for me to be alive. Most of them are dead. But there have been some protests here at this conference; and it is so nice to see people protesting again. It's so cool. It gives me such hope.
Thank you so much. It was wonderful talking to you today.
This transcript has been lightly edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.
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