Now my diagnosis is old enough to order a drink in a bar.
It’s a funny thing, remembering that moment that really changed my perception of a lot of things in my life. It was the beginning of the “cautionary tale” that I tell when sharing my life experience with others — don’t wait as long as I did to get tested, it will make your life more difficult.
But there are other elements that stick with me, most of which I have written about before:
- The horrible sensation of suffocating with pneumonia, especially venturing into the cold.
- My doctor sending me to the emergency with a note that I read on the way (kind of took the edge off the news).
- My friend Doug coming to get me and going back into the cold to get my prescription filled.
- The bronchoscopy and the night in a hospital bed with oxygen recovering the strength to go home.
- My friend Maychai taking me home that second time, leaving me with a lovely dinner of holiday leftovers.
- The short call with my parents (I still couldn’t breathe well) with an easy disclosure because of how positively they had reacted to my coming out many years earlier.
- The daily phone calls I got through the holidays from the immune deficiency doctor checking on my pneumonia recovery.
- The easy consent to the HIV test when I already knew what the result would be.
- The secondary shock of the first CD4+ count (it was 4).
Those little snapshots of a crazy time that changed my life. I think about them anew each year at this time. How about some updates?
- Not being able to breathe remains one of the things that scares me the most, so I’m very proactive about protecting myself from respiratory illnesses (vaccines, baby!).
- My doctor has now retired and I am seeing another doctor. I’m left, however, with a lasting appreciation of my doctor’s respecting my stupid decisions along the way to not be tested for HIV, even as he gently pushed me to. That respect gave me the confidence that is so very necessary in a doctor-patient relationship.
- We lost Doug in 2014 and I miss him every day. I do go through cycles of seeing different friends more or less often over time, but I will always appreciate the easy comfort I feel with them, and the sense that I can count on help when I need it. A solid circle of friends is so precious.
- I remember the nurse who found me a bed in the hospital the night after my bronchoscopy when I was too weak and oxygen-deprived to go home and take care of myself. He was doing his job, but doing it well and with compassion, and I will always appreciate that.
- More friends. Maychai was my colleague and continues to be my friend. I don’t see her enough, but I always have a lovely time when I do.
- The unreservedly positive reaction I got from my parents to my coming out as gay was so important to me. After years of anguish and fear of rejection, I got their loving support and I knew 16 years later that my HIV diagnosis was not something I had to hide from them either. I don’t have Mum anymore, but I have Dad and I enjoy talking to him every week and visiting him, though less often than I should.
- So many of our encounters with the medical system can seem devoid of actual human feeling — they are understaffed and overwhelmed — that it is always a refreshing surprise to be on the receiving end of someone going out of his or her way to check up on you. That almost everyone has a story about that one health care provider (or more) who went the extra distance and provided a touch of humanity in a time of distress is so much truer an indication of the humanity that is there every day.
- When you’re ready for something, it’s always easier. I spent quite a number of years resisting taking an HIV test because I feared it would be positive and didn’t know if I could handle it, even with the solid support network I had and continue to have. You can really do anything with support and a crisis like the one I lived 18 years ago really underlines that for me.
- I still have a low CD4+ count. It isn’t 4, but more like 260, still lower than it ought to be and low enough for me to be able to cling to a bit of my personal pessimism. But beyond the odd cold that lasts longer than it should and a couple of bouts of gastro-intestinal problems after travel to exotic places I have been pretty healthy this whole time and never had to stop working.
I know that some in my community will balk at my use of “AIDS” as opposed to HIV, but I have that badge (had my AIDS-defining illness), so choke on it, kids! I use it for the shock value, for the recognition it gets among the less-informed. I also use it knowing that its meaning has changed: AIDS used to be a prognosis, and not a good one; now it is a diagnosis and while that is also not good, it is entirely possible to leave it behind and find your health.
And just to do that thing that drives me crazy when uttered without explanation: getting HIV has had some positive impacts in my life, if you’ll pardon the pun, but impacts that you can also get without the HIV, but with a little introspection and reconsideration of values.
Happy AIDSiversary to me!
This article previously appeared on Ken's own blog, Talk to the Hump, here.