A reader’s own ‘Note to My Younger Self’

I have just received my copy of the September + October 2019 issue. Like I do with every issue, I always go to the Editor’s Note first. This one put tears in my eyes. “Note to my younger self”—wow, if only I could have been able to do that! 

I have struggled with alcohol and drug use since I was 13, which is also when I drank my first beer and smoked my first joint. Little did I know then that I would later become an alcoholic and drug addict, live in and out of jail (mostly in), and become HIV and hepatitis C positive—at the same time! All of the hurt, all of the pain, all because of drinking and drug use. If I were able to go back, I need not to tell you what I would have said to that kid. Since 1990, I have only lived about three years on the street (closest I’ve come to having a home). Now, I just turned 53 and will have been in prison most of my adult life.

I was tested in in 2005 because of a rash that I developed. The skin irritation began in the summer, so my cellmate and I thought it must have been a heat rash. Turns out that the rash was actually shingles. The nurse put me on quarantine and said that it usually occurs when there is a breakdown in the immune system. So there I was in prison, alone in a cell, with nothing and no one, thinking, “What the ----?”

After a couple of weeks, I was escorted to the dispensary. I was pushing 40 and scared and nervous as hell. The possibility of getting hepatitis C and HIV never crossed my mind. I was thinking it might have been skin cancer.

I was taken to a room with a big table and five people dressed in white medical scrubs were crowded around it. Now I’m really freaking out. Two doctors I had never seen before were accompanied by two nurses from the jail, and with them was the psychologist I had been seeing regularly for mental health.

“Now, Michael, we have some news that may cause a great deal of alarm and anxiety. We are sorry, but your blood tests came back positive. You have hepatitis C and HIV,” they said.

July 2005 was when my world caved in on me, Jeff. You said that yours came “crashing down around you” and that you felt “alone and full of shame”—just as I do!

I read your note over and over and it took me back to nearly 15 years ago. I was already feeling alone and shameful for the thefts, now feeling even more alone, with the shame continuing to amplify. I couldn’t help recalling how I was molested as a young boy, considering the prostitution I was involved in, reflecting on the men I had been with while incarcerated, and thinking about my drug use with needles. Just a flood of thoughts of everything I did and everything that was done to me.

I was so overwhelmed with these erupting thoughts, memories, flashing faces, places, and everything in between, I felt shame, embarrassment, insecurity, and humiliation. I became so very isolated and hurt, even angry.

The doctors told me that I needed treatment right away. My CD4 was 209 (borderline), and my viral load was over a million. They said that starting HIV treatment was the first priority; hepatitis C could wait a little while.

I was put on Sustiva and Truvada for 10 years. I then switched to Atripla, a single, daily pill. I now take Triumeq, a different single and daily pill. My viral load has been undetectable since 2008—took three years. My CD4 has been rising, but it fluctuates. It has been as high as 1,407; however, last check was only 986, and before that it was 1,113. Every 90 days I have my blood drawn; hopefully, I will see better results over the next few weeks. I’m hepatitis C free, as I went through 48 weeks of pegylated interferon (an old form of treatment).

I have a court hearing that I hope will get me treatment via the Maryland Department of Health and Mental Hygiene. The Third Circuit Court judge for Baltimore County, Nancy M. Purpura, understands that I need help. I suffer from PTSD, anxiety, and depression, so I want to get mental health treatment. I am hoping to get into a long term inpatient program that treats dual diagnoses.

As you say and have said, Jeff, “Hope has sustained me this far, and so it will continue to do so.” I will never, ever give up hope. Hope is all that I have.

Jeff, thank you for being the inspiration in my life, as I’m sure you are in many. Together, we can continue on with our fight.

—Michael Barnhouse

Hagerstown, Maryland

Editor Jeff Berry responds:

I’m glad to hear you are doing so well, Michael, and honored to be a source of inspiration for you. Most now agree that viral load suppression is a more important marker than T cell function, so I wouldn’t worry too much about the fluctuation, especially with such high numbers. It sounds like you are getting good medical care, not everyone in your situation does. I hope that you are able to get into the long-term inpatient program and continue to keep hope alive.