“I Wish You Came with an Instruction Manual”: Our Illness Doesn’t Affect Only Us

“I Wish You Came with an Instruction Manual”
Our illness doesn’t affect only us
by Hank Trout

My husband Rick and I (yes, after eighteen years together, he made “an honest man” of me—we married at San Francisco City Hall on October 8!) are an example of the long-term serodifferent couple. I am HIV-positive, Rick is not. But his having remained negative all these years does not mean that he has not been affected by HIV/AIDS. Quite to the contrary, my being positive has reshaped his life as well as mine as we navigate this whole business of “aging with HIV” together.

When Rick and I first met in 2001, he had been “out” for only a few years. And he lived in Fort Worth, Texas. Thus, his exposure to people with HIV/AIDS was fairly limited. He knew about the disease, of course, from newspapers and television reports, but he had had no direct experience with anyone who was living with HIV.

And then we met.

I told Rick about my HIV status almost immediately after we met, of course. His response: “So, we’ll be careful.”

(So very different from the reaction of the man I was living with when I received the diagnosis. He yelled at me with his fists clenched, “How could you do this to me?!” I won’t dignify him by naming him here. Suffice to say that his response baffled me, shocked me. I needed a hug. He hit me with a sledgehammer. I knew other men who left their partners when the partner was diagnosed positive—afraid, practically numb in fear, they disappeared. So I was prepared for him to leave. What rocked me was the anger and the horrible things he said to me. Coming fresh off the diagnosis that morning, his response felt like the second kick in the gut that day. Needless to say, that relationship didn’t last long after that.)

For the first ten years or so after Rick moved here in 2004, my HIV did not attack me so hard. But the last four or five years have been extremely difficult. For both of us. He has had to accompany me to the emergency room at least a dozen times; he traveled several times to Daly City to visit me in the physical rehab facility after my October 2018 fall; he has seen me through two back surgeries and nursed me through the removal of a cancerous appendix; he has made innumerable trips to the pharmacy to pick up my medicines when I simply couldn’t get out; he has helped me battle strange rashes, excruciating sciatica, five compression fractures and three herniated discs in my spine, and, a couple years ago, a bout of pneumonia and influenza at the same time; he has assumed all of the household duties that I used to perform; he has bathed me, dressed me, cooked for me, carried me, and put me to bed; and since April 2018, he has been pushing my 118 pounds around town in a wheelchair like the champion he is!

He signed up for NONE of this. I never forget that.

When I think of all the friends whose lovers abandoned them when things started to get difficult in the 1980s and ’90s, I realize how truly blessed I am to have Rick in my life. A lesser man would have left me when the road got rocky; a lesser man would have left me in the dust years ago when caregiving overtook lovemaking.

Through all of this, through all of the last five or six years when taking care of me has eaten up almost as much of his time as his day-to-day paying job, I have never heard a single syllable of complaint from Rick. Not one. The closest he has come to complaining happened the other day. As we struggled with getting me (and my weakened, shaky legs) up a flight of stairs, he said in frustration,

“I wish you came with an instruction manual!”

Me too, Rick, me too.

This aging-with-HIV is a completely new phenomenon, uncharted territory. Since the very idea of aging with HIV had never occurred to anyone until a few years ago, each of us long-term survivors presents a unique set of illnesses and co-morbidities that was never imagined before. It’s important for us to remember as we age, and for those around us to remember, that no one has ever done this before. We who survived the Plague Years are the pioneers, the first generation to grow old with HIV.

There is no instruction manual yet. That manual is being written on the bodies of us long-term survivors.

All of this led me to think about just how much, how completely we long-term HIV/AIDS survivors rely on others for help. Even folks like me, who would rather be eviscerated than ask for help, rely on paid caregivers, friends, family members, roommates, volunteers, doctors and nurses—it truly does take a village to care for us. And as I grow older and my health presents ever more complicated challenges, the village keeps growing. Our illness doesn’t affect only us; it creates ripples that become waves that drench all of those around us. And sometimes, when those waves become an unbearable tsunami of physical and emotional pain, those people are swept away, carried far out of our lives, leaving us to tread water as best we can alone.

The good ones, though, stick around and help.

In this season of giving thanks, please remember to thank those people around you who have supported you and cared for you. They’re hurting too, y’know. They deserve our gratitude. I’ll go first –

Thank you, Rick, for sharing my life. I love you.

Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.