Missing My Mother, I Recall How Stigma Stopped Me From Telling Her My HIV Status

Abdul-Aliy A Muhammad
Abdul-Aliy A Muhammad
Clint Steib/clintsteib.com

My mother was such a beautiful spirit. We were so connected to each other, and I relied heavily on her as an advisor. She was bold and had the most informed optimism I have ever encountered. Her spiritual centeredness was probably the reason for this. She saw the world as distressed and hurting, but this was not her guiding light. Melody Ellen Beverly envisioned a world where we were all taller and more powerful than we knew. She saw humanity in everyone and made space for everyone in her heart.

When I would get frustrated, as I often did growing up, she would say, "Never let anyone knock you off your square," which I remember today when I'm upset about something. There were nights when we would stay up into the morning talking about the deepest, most private thoughts we had: our existence, the afterlife and our fears. One time, we couldn't stop joking about writing a self-help book that would be a parody of how most self-help books are constructed. We laughed incessantly about that for hours.

In the summer of 2007, my mother was diagnosed with stage four non-small cell lung cancer that had metastasized to her brain and later the adrenal gland and elsewhere. I was devastated. I thought she would live forever. They had to operate immediately to remove a tumor on the brain. After coming out of the recovery suite, she remarked, "They must not know about me," referring how quickly she recovered after the surgery. I've never felt the vulnerability of death be as present as it was during this time. It was so hard to continue to live.

A year later in December, I received a routine rapid HIV test that changed my life. I got the test while waiting for my best friend to get off work. I had been slightly sick a few weeks prior, but I tested often and didn't really expect the result to be anything but negative. I knew the person who tested me, and the counseling session was warm, and I felt safe talking about what was happening in my life sexually. Back then, AIDS service organizations (ASOs) were mostly using OraQuick, and it took 20 minutes for my results to come back. During the wait, we talked about my life, then suddenly the eye contact that was present before changed, and he asked me whether I wanted to screen for other sexually transmitted diseases. I agreed, and when I returned from the restroom, I was given a positive test result.

I was devastated to say the least and went through the cycle of shame. I went into a depressed state for months, thinking that I'd never be desired again that people would judge my entire being on this new reality. My younger sister was the first person in my family I told and the only person I wanted to know.

My mother was fighting for her life, and I thought telling her would put another burden on her shoulders. We had talked about HIV often. My mother worked at an ASO in the early '90s when people were on AZT and dying at alarming rates from AIDS. I remember talking to her about people she was close to who had died, and she was often crushed by these deaths. I figured that I'd be crushing her now if I said anything about my status.

Throughout the five years until her death, people would repeatedly ask her the same question: Were you a smoker? She did smoke cigarettes for a period. The question was problematic because while, yes, smoking increases your chances of developing lung cancer, does it matter?

I noticed that lung cancer patients have fewer resources than people with other forms of cancer and that there is a stigma attached to this form of cancer. People are less empathetic toward these cancer patients because, well, more likely than not they were smokers.

It hit me that we both were dealing with stigma. Not the same kind, of course, but for both there is an idea in people's minds that your behavior led to your disease. I wanted to have conversations with her about this and couldn't come to a place where it made sense.

A few months prior to my mother's passing, I received a call from her. I answered the phone, and she was sobbing on the other end, and something told me that she knew. She said, "We have to talk about my health and your health."

My heart sank. The pain expressed in her words hit me at my core. Her heart was hurting: Because of our connection, she wondered why I hadn't told her. I tried my best to explain that I didn't want her to worry about me; I was healthy, and I didn't want her to have to think about it because she was engaged in the fight of her life.

In retrospect, I can see that what prevented me from telling her was internalized HIV stigma.

I felt as if my completeness had been chipped away at when I became poz. I didn't feel worthy of taking up space. Embedded in my mind was a feeling that my mother -- someone who loved me so much -- would discard me the moment she knew this about me. Here was someone who embraced me when I came out as queer; her love through that gave me strength. Here was someone I would talk to about everything, and yet HIV stigma had me arrested. I never got to talk to her and heal with her about my poz status. I wish I could get moments with her. I wish I had told her. I miss her so much.

Read Abdul-Aliy's blog, Chanting From the Margins: When Blackness, Queerness and HIV Intersect.