Finding Meaning in My Diagnosis
Part of the Series Day One With HIV
November 11, 2015
I found out my diagnosis in the worst possible way.
My physician called me into his private office, started balling and stated: "You've got 6-months, go home and get your affairs in order." He then leaned over, pressed the intercom and called in a Social Worker waiting outside to take me away (to start getting my affairs in order).
That was Summer 1997.
Up to that point my health had been declining. Not huge things, but still awful, painful gnawing little health matters people wouldn't typically get.
I was super busy with a full life -- working and finishing graduate school -- and thought I was only worn out. I knew my medical history could include anomalous immune function issues due to GRID and later when ARC was coined. Around that time, I believed I had ARC but my health always made a rebound.
The few "new" HIV tests I'd taken when they first came out were either negative or inconclusive. So I opted for living as full a life as possible believing I was likely positive since all my peers at the time were sick or dying. Certainly by 1997, many of my peers and friends were either dead or HIV+.
When my illness took the worst dip ever in '97 I went to see my Kaiser physician who did the newest of HIV tests and when the office called to schedule my follow-up I knew what the outcome was going to be.
In 1997, people were still given 6-months to "put their affairs in order" if you tested positive. That's exactly what happened.
My physician invited me into his private office. He was wearing rubber gloves, trembling and I could see the tears welling before he opened his mouth with the news. He and the hospital staff gave me my "send off." There was nothing more they could do except dismiss me to my fate.
I know today this sounds insane but it was how things were then.
My diagnosis? I didn't just test positive, I had AIDS with less than 125 T cells -- that dropped to 46 soon after, as well as a couple opportunistic infections "best treated" at the county hospital AIDS ward. Kaiser didn't have a treatment strategy for me. At the time there wasn't one.
My partner refused to believe I had AIDS and was no help. It wasn't until I received my "Diagnosis Letter," which is what we used to have to get in order to access County AIDS Services, that my partner believed me. He came apart in an emotional breakdown.
He wasn't able to care for me as my health rapidly deteriorated. I was turned away by my family. So I had to find the strength to help myself.
I needed to access short-term disability assistance while I tried to get better because I couldn't function. There was nothing at that time for the newly diagnosed living on the Peninsula in the Bay Area. San Francisco, in a way, "closed the border" to the flood of AIDS cases accessing their services from outside the county.
Emotional support was one thing I not only needed but could give to the HIV/AIDS community having recently graduated with a Master's in Counseling. I got to the Peninsula AIDS Services were I saw a specialist who immediately put me on weekly Pentamidine (remember that horrible prophylactic treatment?) and a couple other medications to combat my other infections.
Then I went into action.
I developed a counseling component to the AIDS Services in San Mateo County. I think my anger over my situation helped me focus and gave me the energy.
I didn't want to sit around waiting to die. I figured, if I couldn't survive my AIDS death sentence, then at least my diagnosis could benefit others.
I found a (highly invasive) HIV-lymph biopsy clinical trial at Stanford University. They put me on a not-yet-approved protease inhibitor. Each week I showed up so the virus could be tracked. I learned I probably had HIV over 10-years at that point from the scar tissue that was all that was left of my lymphatic system.
While I felt I was doing "the right thing" helping others through my eventual death, my emotional stability continued to erode without therapeutic emotional support.
I dove deep into alcoholism and fatalism. Why not? I only had a short time left, why feel any pain?
At one point, I decided to party myself to death and headed for an end-of-life non-stop celebration in Palm Springs. I hoped I would die drunk and high on a sex binge. Fortunately for me the Clinical Trial study medication worked and my health made a rebound.
I didn't die.
When my new physician at the Desert AIDS Services told me I had at least another year ... I wanted to live!
A party-end to my life was not for me and I found AA as well as emotional support through therapy.
That was 18 years ago.
While everything in my life hasn't been rosy -- I've struggled time to time with medication issues and toxicity -- I have the best life today I could never have imagined. I cleaned myself up and am 15-years sober, back active writing, making art, counseling people and living a fuller life than I had even before my "fatal" diagnosis.
Last year, I shared a "blip" on my HIV recovery radar wherein the original Clinical Trial medication (Protease Inhibitors) became toxic to the point of my deciding to give up -- and found a new alternative drug that changed my life. Talk to your physician. See what's available.
So I say never give up no matter what because you never know what is going to be right around the next corner. That's what we used to say to our fellows on their AIDS death beds. But now it's true. New treatments actually do come out around the next bend when you're having a bad HIV day today.
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.
This article was provided by TheBody.
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