I'm a Longterm Survivor, Not a Miracle
"You're a miracle- you know that, right?!" Someone said that to me once. They had just heard me talk about 20 years of living with HIV at a conference. I didn't buy into the miracle theory, but I didn't voice my opposition. I didn’t survive the early, bleak days just to go and throw some shade on someone’s sunshine.
Instead, I just said I was lucky.
That was awhile ago. Now that I've tacked on another 15 years of living with HIV, I understand much more fully that some of that luck was only made possible by having some major bases covered.
A safe home
Being diagnosed at age 11 in 1987 presented some challenges. But being diagnosed with HIV at any age - in any year - is a game changer. Your present gets turned upside down and the landscape of how you view your future is dramatically altered.
As unsettled as I was by the news, I had a safe roof over my head. I wasn't in charge of paying bills. My main responsibility, in retrospect, was getting one shower in a day to rinse off that Nintendo flop sweat - Metroid was a banger.
A supportive family
On the days when I didn't feel up for going to school, I stayed home. The prognosis was 6 months to 2 years- indeed, it was a rough time. My parents hope was that I would beat the odds and graduate from high school.
If you had told my mom back then that I would outlive her (she passed to spirit last year) she would have glared at you. Rolled up her sleeves, puffed her cigarette and said: "Well, if you're saying you're going to try to kill me right now I hope you packed lunch for the job."
My mom was, and will always be, the ultimate badass.
The fact that I was a junior member of a family and being taken care of cut out a lot of stress. I also had the guardrails of six more years of schooling and parents that let me stay home and rest, whether the wounds of HIV were a result of a weakened immune or the psychological toll of living with the stigma and a secret.
Access to care
Before effective treatment became available, I had access to care. My HIV doctor was an hour-and-a-half away from where we lived. My mom was able to get me to appointments about 4 times a year in the earliest days of my diagnosis.
The main objective was tracking my t-cell count. If my t-cells dipped, the chances of staying home from school went way up. Trying to play catch up with homework was stressful but, fortunately, most of my teachers were sympathetic and limited the assignments that were sent home for completion. There is no way I could have kept up otherwise.
I'm thankful that my parents made my health more important than my attendance record. Some mornings, the thought of spending a whole day in school was exhausting. I can't even begin to explain the relief on those mornings when I turned over and slept for 3 more hours instead of getting up to get ready for school.
A medical history
I was born with hemophilia. So having a medical condition was familiar territory.
My parents made sure I didn't view myself as less due to a medical condition. My mom taught me that we all have challenges in life, and that some of mine happened to be of the diagnostic variety.
Of course, nothing much is comparable to the stigma that HIV brings to the table. But having experience with doctors and hospitals from an early age was so helpful. Or at least one less hurdle to overcome.
How do you feel about your relationship with your current doctor?
A few years before my immune system's free fall, I opened up about living with HIV. I made so many new friends who were also living with HIV. Some of them bemoaned life on medications and the side effects, others' lives were literally saved in the knick of time.
So in 1999, when my t-cells were plummeting and I had no appetite, even for ice cream, one of my positive friends did not mince words when I scoffed at going on meds. He said, "You're going to DIE if you don't go on meds!"
It was harsh. But it was the truth. And one I needed to hear.
What is most important about that timeframe is that I had met the love of my life, Gwenn, because I was HIV positive. She was also an HIV educator. I had recently moved out on my own and the timing could not have been more perfect. She finished up graduate school and seamlessly moved in with me. The timing was key because sharing a roof meant I couldn't hide my failing health.
Overcoming denial: A miracle?
In my case, I don't think I would have made the decision to go on meds if HIV were still my secret. I get so sad when I hear about someone passing who did not even try treating HIV. There are lots of reasons, denial being one of the biggest. And I'm certain I would have been in denial about my health if I had not have opened up.
Heck, I was in denial even after opening up. The difference was that the decision to go with my heart - and mind, it is so beautiful when they team up on your behalf! Talk about HIV... That really put the people in place that I needed at that crucial moment in my life.
Those effective treatments helped me not only regain my health, but enjoy the best health of my life, which continues to this day. I'm in my 40s and enjoying the ups and downs of aging under the prospects - with no promises, of course - of an average lifespan.
Admittedly, sometimes it all does feels like a miracle.
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