May 1, 2013
I am ashamed to admit that I, like so many gay men, buried my head in the sand when it came to HIV. Like many in the gay community, I too had become fatigued with hearing about safe sex, HIV, AIDS, etc. I subconsciously, but purposely, avoided taking an HIV test, because I wanted to live the illusion that my IV meth use and the activity that goes along with that lifestyle would have no consequences to my health. And HIV was the unspoken pink elephant in the room amongst modern gay guys. The only time HIV was ever mentioned was when gossip and speculation over someone's status became the topic of the moment.
The nine days between my HIV test and the results was time spent in a sort of limbo. Life felt like it was on hold pending my test results. I spent those days questioning so many aspects of my life and the decisions that brought me to that point. I often tried to imagine or daydream on what my life should have been like at that point, had I made better and different decisions, but all of the things I had done wrong overwhelmed me.
What if I never left John? Would I still have gone down the road of intense sadness at the failure of nine years of marriage?
What if I never tried meth that first time?
What if I never used unclean syringes?
These overwhelming thoughts caused me to disassociate from myself; it felt surreal; it felt like I had been dropped into someone else's life. In retrospect, I believe my mind was trying to protect itself from itself by not allowing me to get caught up in regret.
When I tried to see my future, I drew a blank. I could not see past my upcoming test results. I pondered how my life would be different if I had HIV.
Would I take better care of myself?
Would it be harder to date?
Would it be harder to trust others and to allow love into my heart?
Would I want to kill myself or would I find a new appreciation for life?
These questions would run a continuous loop through my head.
I was sitting at work when I received a voicemail on my cell phone from the doctor's office letting me know my test results were back and asking if I could please call them back to schedule a time when I could come in to get my results. I freaked out. If the results were negative, I felt they would have just said so in the voicemail. I called the doctor's office back and they let me know the doctor had cleared his afternoon so that I could come in and speak with him. I knew with 100 percent certainty at that point that my test had come back positive.
I emailed my mom (she worked upstairs from me at Marriott) and let her know what the doctor's office had said. The reality of what was happening was starting to kick in and I began to panic. Mom said she would go to the doctor's office with me; there was no way I could have gone by myself. So, we both got off work early to meet with the doctor at 4:30.
When I got there, I had Mom wait in the waiting room. The nurse took me back to the doctor's office and Dr. Shamblin came in.
On Oct. 25, 2007, I was diagnosed with HIV.
I remember disassociating from myself at that moment. Everything became hazy and foggy, literally. I couldn't hear well; all I could hear was a whooshing noise, my vision had tunneled, and the room had become hazy. All I could feel was my heart pounding. I felt shame creep through me, making my face burn. Dr. Shamblin asked if I had brought anyone with me, or was there anyone he could call. I let him know my mom was in the waiting room. We decided it would be best if he told her separately and then brought her in to see me.
I felt so ashamed when I looked up and saw my mother, yet at the same time relieved that I had someone to help me get through this horrible moment. She hugged me; I was in zombieland, as if I had totally shut down. I am glad she was there, because I don't remember much of anything past this point. I know we talked about the next step being to find an HIV specialist, which Dr. Shamblin's office took care of.
When we left the doctor's office, I knew I needed to be alone, though my mother didn't think that was a good idea. She probably thought I would be suicidal, though I truly was not. I just needed the space and time to come to terms with what I now knew. The only way I can take in awful news of any kind is to be alone. Support, at least initially, is best given by giving me space. I drove home, put on my pajamas and just stared at the wall. I did text Brad and Adam in Chattanooga and let them know.
Here is what I recorded in my journal on Oct. 25, 2007:
I am HIV positive. My greatest fear has become real. I am still in shock. I have not broken down yet ... I wish I could feel something. I start to feel sad, very sad -- but then my mind suddenly slams the door to those emotions. My world as I know it will change. I don't believe I am strong enough to handle this. I don't want this at all.
I went downhill fast emotionally. My initial reaction to take some time alone spiraled into a full withdrawal from life, from everyone. Outside of work, I withdrew and didn't allow anyone in. I did not become angry; I did not cry; I did not allow myself to feel very much emotion of any kind. I felt like a failure in life, having erased and dirtied my soul and my body by getting HIV. I felt so dirty; I felt like garbage; I felt ashamed. So many times I felt like I just wanted to die, though I wouldn't say I was suicidal, because I didn't idealize or ponder how to kill myself; I just wanted to simply die due to an act of mercy from God. I lost my appetite because of the emotional trauma, but I also had a thrush infection, so eating was painful anyway. I had to force myself to eat during this time.
My physical and emotional health were so poor, I found myself wishing I would die in my sleep so I didn't have to be a participant in my life anymore. I also found out that I was anemic just after my HIV diagnosis. Anemia is common, and dangerous, in those that are HIV positive. Anemia plus my HIV explained my constant fatigue. Night sweats were a nightly occurrence. Fatigue became my intimate friend. My lymph nodes were always swollen.
I finally broke down a month later while visiting my mom's house. I let it all out, all the anger, the sadness, and the fear ... all in equal part. Something inside of me ripped open; the scab was ripped off my emotional wound, and finally, healing began.
Over time, I came to realize that my family was beyond supportive of me. At my absolute lowest point in life, they provided me love and encouragement to find the will to live. My mother never once allowed me to feel sorry for myself, beyond that first month or so. She always was an open ear and an open heart for me to lean on. My dad was supportive as well, even driving me to my first appointment to get lab work done. He was afraid they would take too much blood and I would be too dizzy to drive home. (He was right.) My brother and sister-in-law were supportive as well, not letting me be afraid to play with the kids, even though I was petrified I would get a cut or scratch or something, but in all these years that has never been a danger.
Having HIV has forced me to grow up and learn some hard truths about myself, and yet I have also found a peace and strength I never knew I possessed. Having to deal with my HIV brought all the fragmented pieces of myself together and caused me to make changes that created a more solid me. I had already ended my meth addiction, as well as stopped drinking alcohol -- challenges by themselves.
I went on HIV medication two years after my diagnosis, because my HIV was having a continuing degrading effect on my physical health. My health after starting HIV meds, though not perfect by any means, is still much better than what it was. Gone was the fatigue, but in its place is a constant tiredness. Before, I barely got through the day ... crashing and collapsing at the end of each day. Now, I can at least find the bare minimum of energy needed to live life.
But ... and this is a big but ... people need to understand that being on HIV medication in no way brings your body or your immune system back to what it was before. Most people can't just take a pill once a day and go back to normal.
Gone is your energy. Gone is your ability to go a day or two without some level of nausea. Gone is your ability to have normal bowel movements. (TMI, yeah, but it is also the reality.) Gone is your ability to be spontaneous and take a road trip without careful planning to make sure you have enough meds. Those ads that you see where a buff, tanned, hot dude is standing on the top of a mountain, presumably having just hiked there ... that may be the reality for a few, but it is not the norm for most.
If I have influenced even one person to get tested for HIV or to think twice before doing something foolish, then I have done what I have set out to do. And remember too, just because someone tells you they are HIV negative, [that doesn't mean you can stop being cautious, because] 1 out of every 5 -- that's 20 percent of -- gay guys who have HIV don't even know it.
Jason McDonald is 38 years old and has lived in Tennessee since he was 12. He's been in a relationship for almost four years now, with an HIV-negative man.
Want to share your own "Day One With HIV" story of finding out your diagnosis? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to firstname.lastname@example.org. In the coming months, we'll be posting readers' "Day One" stories here in our HIV/AIDS Resource Center for the Newly Diagnosed. Read other stories in this series.