By: Joe Siegel/TRT Reporter
The first known case of AIDS was discovered in June 1981, 30 years ago. Since then, more than 30 million people have died from the disease. Millions more have been infected with HIV. Forty-two year old Darren Wells, from Woonsocket, Rhode Island, is one of them. This is his story.
TRT: When did you learn you were infected with HIV?
DW:
I learned I was infected on September 6, 1999. I was thirty years old. I remember the date because I was in the hospital, and I was very sick. I was tested on September 2, but because it was Labor Day weekend it took a little longer to get the results back. They couldn’t rush it any faster than that.TRT: How did you react?
DW: I was quietly resigned. I was pretty sure that I would be dead in a few days. I had severe wasting, having lost about a third of my body weight; I am six foot three, and my weight got down to 123 pounds. (I weigh 195 now, in contrast.) I had an extremely severe and painful esophageal ulcer. I had pneumonia. I was so weak; I couldn’t even sit up in my hospital bed without assistance.”
TRT: How did you get the virus?
DW: Sexually. I don’t know for sure who infected me, but I’ve narrowed it down to two likely candidates.
TRT: How has this disease impacted your life?
DW: It’s forced me to pay a lot more attention to my body. I’ve gotten a lot better, out of necessity, about letting my doctor know everything going on in my body, even if it seems insignificant, because a couple of times what I thought was a small thing was a sign of something pretty serious. The first year was the hardest, because I was so scared, paranoid, every time I sneezed I thought “Oh no, this is it, I’m going to die…” But it takes a lot of energy to be that terrified all the time. So, I kind of had to let go, to just get in the habit of seeking the attention of a doctor when something’s off, and letting them worry about it.
TRT: What medications have you been taking?
DW: I am currently on my fifth regimen. Sustiva was kind of the backbone of my various regimens for several years, but the sleep deprivation finally got to me and I more or less told my doctor “I’m not taking this anymore, so you need to find something else for me.” I was fortunate that I only got a couple of nightmares from that drug; for those who get the nightmares, it’s terrible. I’m currently taking Reyataz, Norvir, and Truvada, and tolerating it pretty well.
I want to emphasize, for anyone who might be HIV+ and reading this, and considering medication: plenty of people take Sustiva (or Atripla, which has Sustiva in it) with no weird dreams, and no nightmares.
In the grand scheme of things, taking pills really isn’t that big of a deal. Sometimes it’s inconvenient, because I have to take my meds with food, but that’s not a huge imposition. It’s become part of my routine. Even the side effects are not as big of a deal now, although if you’d told me twenty years ago I would be dealing with this stuff on a daily basis (neuropathy, GI issues, fatigue) I would have thought that was horrible.
TRT: How did friends and family react when you told them about your diagnosis?
DW: For the most part, my family has been supportive beyond any expectation I had, beyond what I could imagine, and that’s made a huge difference. As I’ve already said, I was ready to give up when I found out. I told my dad and my older sister, Mikki, about an hour after I got the news. They were visiting me, flying in from out of town, and they saw how bad I looked. I figured that I was going to be dead soon, so I might as well let them know the truth about what killed me.
My friends have been a mixed bag. Some friends quietly drifted out of the picture; one friend in particular told me in a very painful way that he couldn’t handle it, and that was the last time I spoke to him. But while that was painful, something wonderful happened also: the friends who stuck around proved themselves to be real friends. So now, I am surrounded by amazing, supportive, nurturing people. Again, I am very grateful for them, and they help me survive and thrive.
TRT: When did you begin volunteering for AIDS Project RI?
DW: I started in 2004, with the Speakers Bureau, and that position led me to do other things, like staffing the table at Pride and helping to set up Gay Bingo. I had an inkling I was headed in that direction from the moment I went to my intake with the Project, but it took me two years to finally get my foot in the door.
TRT: Tell me about your work for the Speakers Bureau.
DW: First, I want to share a secret about Speakers Bureaus in general: they are a largely untapped treasure. They do as much for the speakers, if not more, than they do for the audiences. There is no better cure for shame and stigma than standing in front of a group of strangers and saying, out loud, the very thing you want to hide, and then being thanked for doing it and told how brave and wonderful you are. It disarms the shame’s power like nothing else can. It’s not just about education for the masses, which of course is also important; it’s the best kind of therapy for the HIV+ individuals themselves. Everyone wins. It’s one of the greatest blessings I’ve received, in a life full of blessings, to be able to tell my story the way I have.
For more information about AIDS Project Rhode Island, call 401-831-5522 or go to their website at www.aidsprojectri.org.
