An AIDS Walk Champion Remembers – and Keeps Fighting
Getting a diagnosis of HIV/AIDS at age 25 would not be easy for anyone to handle, especially back in the 1980s, when it could mean preparing for death. Chuck Comstock, now 56, remembers what it was like to be tested back in the day, when patients had to wait two agonizing weeks for the results.
Comstock was 25 when he learned he was HIV-positive. He dealt with the news and survived those years, and now he’s a force in fundraising for the cause through AIDS Walk.
Comstock said he initially got involved this year more for the Heartland Chorus than himself.
“My involvement came about because I was a team captain last year for the Heartland Men’s Chorus and I certainly wanted the Chorus to participate this year.” He said he couldn’t participate this year in the walk. But he wanted the Chorus to have the information, so he went to one of the meetings for team captains.
“I sat through the presentation and then started to leave and came back. I talked to Michael [Lintecum] and Josh [Strodtman] and said, ‘Guys, you’re doing a great job but …’ It felt like something was missing. I felt like I was talked to, talked about, but there was no voice from the HIV[-positive] perspective. And Michael was like, you’re absolutely 100 percent correct. But you know, we also can’t really go around asking people if they are HIV-positive. So it takes somebody who is HIV-positive and comfortable and willing to speak out to have that voice heard. And I said OK. And he was like, are you comfortable doing that? And I said yeah.”
After that, he said, he spoke at the next team captains’ meeting in early February and went with Lintecum and Strodtman to make presentations at two corporations.
Comstock talked about the wonderful outpouring of support he gets from AIDS Walk throughout the year and even from speakers on the day of the walk.
“That is so wonderful to have. But at the same time, it’s interesting being the person living with HIV and hearing all that and saying ‘Yes, that’s wonderful, but at the same time, here’s what I deal with. And here’s why it’s so important to me. Because it’s either a cash price of $2,100 a month out of my pocket, or copays with insurance of $600 a month out of my pocket, or because of AIDS Walk and Ryan White funding combined, using the program HSI [Healthcare Strategic Initiatives through the Ryan White Care Act] and zero out of my pocket each month. It’s real simple math for me why AIDS Walk is so important. Why it’s so important in my life. Those are my real numbers.
“If I had to pay the cash price every month for both generics, I couldn’t afford anything. Even with the insurance and copays, $600 a month is still outrageous. I have the receipts from Walgreens. Welcome to my world!”
AIDS Walk is the major part of the AIDS Service Foundation of Kansas City, led by board president Christopher Beal. The four primary beneficiaries from AIDS Walk are AIDS Service Providers (ASPs) in Kansas City: Kansas City CARE Clinic, Good Samaritan Project, SAVE Inc. and Hope Care Center. In addition, the AIDS Service Foundation of Kansas City gives out community grants to local organizations that provide education and services about HIV/AIDS.
Without Good Samaritan Project, Comstock said, he wouldn’t have found HSI, the program that takes care of the copays. He also credited GSP for their case management and their support after two surgeries that prevented him from driving for about a month. He needed to get to doctor’s appointments, trips that can often be more difficult by bus when those physicians are in outlying suburban neighborhoods far away from his home in midtown Kansas City.
That experience gave him the idea that this might be another area of services that could be provided for those living with HIV.
“There are no programs for rideshare,” he said. “They can give you a bus pass, but if your doctor is 10 miles away, the buses don’t often go there.”
Comstock said that when he spoke to his GSP case manager about this problem, “She was flabbergasted that there was no program at all at this point for this. And so, she said, ‘I’m certainly going to propose that we look for funding.’ So once again, here comes AIDS Walk, possibly, or other funding.”
Fortunately, Comstock said, many of the doctors that people living with HIV need to see are in midtown Kansas City near good mass transit, but there are still many specialists out in the suburbs.
“I had friends from the Chorus and other friends and my husband that could get me where I needed to be, but not everyone can,” he said.
Comstock will celebrate his 26th anniversary of his relationship with his husband, Jeff, in August. They were married in 2012 in Niagara Falls.
Comstock said he was first diagnosed with HIV on Aug. 8, 1987.
“It will be 31 years,” he said. “But in talking with doctors and looking at medical records, what we’ve kind of determined is that it’s probably closer to 32-33 years.”
Comstock said that at the time, he was an accomplished Eagle Scout going off on an adult trip with his Scout leader father and had to have a physical. At the physical, he said, he asked for an HIV test because at the time, it took two weeks to get the results and he figured he would get them when he returned.
When he finally met with the doctor for the results, “he said, ‘Not only are you HIV-positive, but the normal arc for this disease is about three years.’ And I was only six weeks past my 25th birthday. So I was being told that I wouldn’t live to see 30. And here we are, 31 years later.”
Comstock said he did experience the stigma that some had about people living with HIV/AIDS, particularly in one very personal instance.
“I’ve always been pretty much open about my status, pretty much since day one. The worst experience for me was after I was diagnosed, and I was working at the day-care center. It was from a co-worker who I considered to be a very good friend. I had also done a lot of babysitting for her and her husband. And I told her because I thought it was important that she know, and I thought I was going to get support. Instead, she became hysterical, crying and yelling at me.
“She said, ‘What about my baby? What about her? What have you done? Is she safe?”
He said he told her: “Your child is less than a year old, there’s nothing I can give her. She wouldn’t talk to me after that and she certainly wouldn’t let me near her child. It’s important to remember those experiences because it reminds me how far we’ve come. It was sad. I lost a friend. I lost someone that I thought cared about me as a person. She would not work in the same room with me anymore, wouldn’t talk to me, and certainly wouldn’t let me babysit her child.”
Comstock said that for him, AIDS Walk is about the heart.
“There’s a mixture of sadness because we recognize names of people we love. And we’re sad because they’re not with us. But with any people that we’ve loved, there’s always that laughter and joy that they left behind. I recently shared with Michael and Josh – my best analogy for AIDS Walk on the day is that it’s like the best family reunion that you’ll ever, ever attend. Because we have those beautiful memories of the people that aren’t with us anymore, we’ve got the friends that we see every year, and then we bring the new family.”
At the walk, he said, “This is what we can do. It is political. There’s just so much about it, whether we’re singing onstage, pumping people up or reminding them about why we’re there. And when we’re walking and we see the white banners, and when we’re laughing and telling jokes because some dog pooped and we’re stepping in it, it all comes together to make a statement that says we’re here, we have purpose, and we have the ability to make change.
“Whether that was 30 years ago when we were saying that or right now. The message is slightly easier to say, loudly, but it’s still the same message, because we still have so much work.”
Comstock said that, for him, AIDS Walk is tied to being part of the Heartland Men’s Chorus. The chorus always sings onstage at the walk, in addition to walking and raising money. In fact, they are nearly always one of the top fundraising teams in AIDS Walk. As of this date, they are the fifth-highest team and have already raised nearly $6,000 for the 2018 walk.
“Heartland Men’s Chorus has always been a part of the walk – for all 30 years,” Comstock said. “That’s part of the reason the Chorus started. We not only wanted to sing together, but we wanted that community as well to give support to the men who were living with HIV and dying. I always say that the Chorus taught me to live and taught me to die.”
He paused with emotion, considering his deep connection to his Chorus friends.
Later, he described standing onstage with the Chorus during AIDS Walk: “I see all these family members standing up there listening. They start off with the white memorial flags, and then everybody falls along behind. There’s a great symbology there. They are and were our great leaders. They were there. Many were great community leaders, many were great examples, great people, great friends. They continue to lead the way. That’s what I mean about the family reunion. I think the best family reunion is when we talk about people who led the way. AIDS Walk gives us that opportunity.
“AIDS Walk is a reminder every year of that.”