“I’m tired and don’t want to deal with it,” wrote one reader whose letter appeared in the November+December issue. “All my friends gone—my lover, too. Take care, God bless all my family at TPAN and all around the world!” With that, he had seemingly given up. The Conversation is usually the forum for readers to respond to articles in the magazine, but that letter prompted a number of PA readers to react, sharing their own experiences and offering messages of hope. What follows are readers’ responses, in the order in which we received them.
Sometimes I think somebody is talking to me through your magazine. I read The Conversation on Hughes Unit in Gatesville, Texas [“Don’t want to deal with it,” November+December 2016]. I was there. Not in Texas, but where he is in the way he was thinking. I too wanted to give up.
I also lost many people that I cared about through the years. In 2011 I lost Doris, the mother of my son. I saw her in a hospital in the Bronx. I could not recognize her. I tell you this: You really don’t want to die. What I think you are trying to say is “I want to live.” Many of us lost someone who we cared about. We feel the void. Who will replace that empty spot in my life? Nobody. I too wanted to stop taking my meds. I felt alone too. Right now I’m in prison, not my first time. I’m not proud of things I’ve done that led me here. But one thing is for sure. I want to live. That you ever thought about telling someone your story—do you know you may save someone because of it? You have a purpose in this world, so do it. Help someone else by sharing your story. Stay alive, be alive. You just made someone look at you—me. You are not alone. I would like for you to consider this. Honor your loss by giving some hope to others to live life. Maybe you can become a speaker of some kind, but how would you know if you just give up? I will honor Doris by helping others. I’m a peer educator here at Collins and it’s very hard to reach this population, but I don’t quit because it’s hard. I want to help others because by doing so I am also helping me. So, I hope and pray that you take a new look at the way you think.
I was diagnosed with AIDS in 1994. I recently found out that I have Stage 4 cirrhosis and dementia due to HIV and alcohol, among other things. I refuse to let this take me to the grave. I will fight for my life to help someone else not to go through this. That is my purpose right now. Become educated to educate others on prevention. Hope this will change your mind, my friend. Yes, my friend. So now you have a new friend, okay? You are not alone and won’t be. The Editor’s Note [in response to the letter] is right on point. I don’t want you to die. I want you to live and enjoy life. Whatever time you have, use it in a positive way. Become a new person who won’t just give up. Try it. It works.
Collins, New York
I must comment on the letter titled “Don’t want to deal with it.” I also, after 20-plus years on our wonderful meds, am ready to throw in the towel! I have been on monotherapy, then the protease inhibitors, and now on Stribild—not bad but not good. I believe most damage was done years ago.
I live in the middle of Trump/Pence Land, two hours south of Chicago in Indiana, the most discriminatory place in the world. There is no transportation for people here on disability. It costs me $110 to get to my doctor. Now I have a shrink trying to take me off my Paxil, Ritalin, and Ativan because I’m not depressed! The last time he did this, my head went into “No Meds Land.” I miss my husband (whom I cared for alone), my dog, and my real life. I buried the three most important people in my life within three months of each other. Once again I am considering stopping all meds—last time I was put on life support. I have a DNR [Do Not Resuscitate order]. No more comas to recover from, especially being totally alone.
Sorry to ramble on, but to “Don’t Want to Deal”—I get you! God bless your journey. Peace be with you.
P.S. In 1996 I was given nine months to live. Now, at almost 60, I am so over it!
I am enclosing a letter I would like you to forward to the person who wrote “Don’t Want to Deal with It.” I don’t know what kind of policy you have regarding forwarding mail, but I hope that in this matter you will see that my letter gets mailed to them. The tone of their letter left me feeling a need to reach out and offer a small comfort without preaching the need to change the decision they had made. I only offer up my own story and hope that that will encourage them to stay healthy, no matter how they do it. I can’t imagine that I am the only person who reads your publication who has been encouraged to reach out to this person, and I hope if several others have, that you will forward our letters. Thank you for your continued diligence in making HIV/AIDS awareness a top priority and a place for those of us to reach out to when the need arises.
—Thomas S. Ford
This is the most heart-wrenching letter I have ever read. This sounds like my partner. The author’s pain hits me in the gut. The response to people in this situation is so horribly inadequate at every level and for so long. They are the forgotten soldiers still fighting and fully engaged in the fight. Is no one reaching out. This is making me cry, I can’t forget this voice.
The writer of the letter that started it all wrote a follow-up himself...
Hello, TPAN and Mr. Jeff Berry. Well, after reading the November+December issue, I saw the letter I wrote you and the Editor’s Note, and I want my family there and around the world to know that when I see my doctor in January, I’m getting on a different regimen of medication. Because I know you guys care about me and people around the world would want me to fight the fight with you all too. Right now I’m on standby; I’m trying to see her before January because I’m not feeling too well. I’m having staph infections and outbreaks. This is because my T-cell count is so low. If it wasn’t for you, I don’t know what I would do. Yes, I’ve had a change of heart. Thank you!
My cousin, Lew Katoff
I am the gay first-cousin-once-removed of HIV/AIDS clinical researcher Lew Katoff. Lew died when I was 11, and was my only LGBT relative on my mom’s side of the family. He was my mom’s first cousin in a tight-knit Brooklyn Jewish family.
I have spent big chunks of time over my life trying to learn more about Lew, because I didn’t know him very well (I was very young) and by the time I came into my own sexuality, he was gone. I have listened to some of the tapes where he interviewed long-term AIDS survivors, but have seen or heard little of his own voice.
I recently learned that a speech Lew gave was adapted for publication in the October 1991 issue of Positively Aware. I would be willing to pay for the costs that would be associated with retrieving a copy from the archives, if possible. I would appreciate any assistance you could render in my quest to better know my too-soon-departed gay cousin.
NOTE FROM ASSOCIATE EDITOR ENID VÁZQUEZ
When we received Brad’s message, a copy of Lew Katoff’s article was actually on my desk. Of the thousands of articles written in POSITIVELY AWARE in more than 25 years of publication, his—“Psychology of Long-Term Survivors”—was the only one at my fingertips (read it at positivelyaware.com). Because we had recently written so much about long-term survivors, I wondered what the term meant in 1991 after I came across the story. Brad has also applied for permission to access Lew’s documents in the Special Collections office of the New York Public Library. I urge anyone who knew Lew or has anecdotes about him, or who has documents mentioning him, to contact Brad.