It’s long been on my mind, but something I’ve been reticent to verbalize or ‘writerize’ about my diagnosis. My guess is that other people with chronic illnesses/conditions/diagnoses think similarly in regards to their own situations, when thinking about or talking to “the great magician in the sky”, as George Carlin used to say in reference to a god.
I wonder what it would be like if I could ‘exchange’ my CVID for something else. When I play this fantasy game in my own mind, I’m usually trading it for HIV—hence my reticence to talk/write about. Let me state for the record, I’m NOT a ‘bug chaser’.* (see first footnote.) Nor, do I advocate the practice.
My thoughts tend more to the philosophic ideals. How would my life be different? Do diabetics dream about trading their insulin injections for something they deem less intrusive? (This is all conjecture, and since it’s my health fantasy, I get to romanticize it the way I want.) In this scenario, my overall health is actually better, because my doc(s) treat a lot more cases of HIV than CVID, and know how to manage it (the disease) better. This is confirmed by the knowledge that my friends with HIV have a better overall health than I do. The other thing, (and this is the one that makes me envious) is that I’d have an already built in community of people like me, with more commonalities that the disease itself. There are plenty of services, support and social groups for my HIV friends. This ties in to a recurrent theme of my life of feeling like I’m always on the outside, looking in. It’s something that is a very common theme among gay people. From our earliest memories, we (or I) always knew that I was somehow different from my brothers, from my classmates, from everybody. And, even though I couldn’t articulate what that difference was for a long time, I somehow knew it had to be kept “secret”. It falls in line with the sense of the “Imposter Syndrome”. Or to analogize this to another group, my friends who are in AA, have that built in community of people like them. Again, I have no intention of abusing ETOH to get a membership card. Given my preponderance of constant anti-biotic use, I would not be able to over drink with any consistency, anyway . But then, if I had that particular disease, adherence to abstinence while on antibiotics would most likely not be in the forefront of my mind.
An additional aspect that frustrates me is that I used to do my share of volunteer work for HIV/AIDS education and prevention & services to people with HIV. That all stopped when I had my first shoulder surgery, which I believe was the catapulting event that was the beginning of my overall health decline. That was followed by the chronic pain problems (which is a completely different chapter). Aside from lacking the energy to be able to commit long term, I’ve re-focused my energies to learning about and working on causes related to CVID. While important and a necessary move on my part, what I do in these regards, impacts fewer people than did my HIV work. It also somehow feels ‘less pure’, as now my motives are now more self-serving.
When I’m able to joke about it, which is most of the time, I say this is just another aspect of how dyslexia has permeated every aspect of my life.** (see second footnote.) Even my body/blood got the letters mixed up. Gay men are supposed to get HIV, not CVID. But then, I've never been one to follow convention. The ironic part being all the years of worrying about HIV, and doing my semi-annual HIV tests (out of habit, not necessarily activity), it didn't occur to me or my various healthcare providers to look at other possibilities, until two and a half years ago. Well, that's partly untrue. For nearly 13 years, I kept saying, "There's something you're not figuring out. Something's not right. I shouldn't be getting sick all the time." And, after all those years, it was the PA who finally diagnosed me correctly.
I close with no answers to my contemplative fantasy disease exchange, but more questions, which is frustrating. As the Baker’s son, sings in the finale of Stephen Sondheim’s Into the Woods, “No more questions—please. No more tests... No more curses you can’t undo…No more questions, please. Close the door.—Just No More.” Just no more—those three words speak volumes. I believe that most of life’s ponderings can be summed up by and/or found in one of Stephen Sondheim’s musicals/songs. I would say Into the Woods is my favorite Sondheim, but I can’t. That’s like parents choosing a favorite child (although mine did, --shocker! It wasn’t me). All of his shows provide a new/usually skewed—in a good way—outlook. (I wish they would do a revival of this show on Broadway. I’ve only seen this one by smaller non-equity companies in smaller venues. I’d really like to see it on the Big White Way. Although I didn’t get there this year to see Sunday in the Park With George (another Great Sondheim show). But I digress.
*term in the gay community for an HIV negative man who seeks out and has unprotected sex with an HIV positive man with the sole intent of contracting the virus. Some view it as a ‘right of passage’ to becoming a MOTT (Member Of The Tribe). There’s an alarming amount of data indicating the widespread practice of this, especially among younger gay men who never have had to witness the decline and gruesome deaths of their friends who died from AIDS complications, before the advent of Protease Inhibitors and all the subsequent HIV meds.
**the other aspect being that I did not come out of the closet until I quit being a florist. I got that backwards too.