A few years ago, if you’d have asked me which I’d be more likely to be doing in 2009, writing a blog about living with HIV or doing circus tricks for Britney on her world tour, I would most certainly have imagined the latter.
But Britney’s tour goes on without me, and here I am, “blogging” my so-called HIV life for ShoutOutHealth.com. What the hell am I thinking, right? My motivation is simple: I think I can help blow apart some stereotypes and stigmas. I hate the stupidity out there. Hey, I've been diagnosed (two years ago) and realize I haven't sprouted three heads, or disappeared into the abyss. I’m still the same person I used to be. I refuse to cower or shrink away or even be slowed down amidst whatever challenges await.
"I refuse to think I’m different or handicapped or have to bend in any way because of some virus in my blood".
So, here goes:
I hate to admit it, but I get a little stab of dread when I see “HIV” in a news headline. I really hate it. I feel perfectly fine today, never better. But I know people die from this, like by the millions? So what’s going to happen to me? It’s my own private Twilight Zone, people I still can’t believe it sometimes.
But because my blood work has been good (consistently above 400 T cells) and feeling good, thus far I’ve opted for no meds (my choice, not my doc’s). Fingers crossed, my external day-to-day life has remained relatively…unaltered.
But waves of my new reality crash into me without warning, walking down the street, or on the bus, or at the movies, I lock eyes with someone for a second and suddenly think to myself, “what if they knew?” Would they throw things at me, look away in fear or disgust, or maybe hug me and be my new best friend?
For an approval-junkie like myself, who wants smiles and applause from my mom, the bank teller, my Starbucks barista, and the entire Universe, being HIV positive is a constant mental challenge. No denying that. But this blog will help me cope. Facing your fears is a sure way to empowerment, right?
The great thing about writing a blog is that there are no stodgy rules, you can go stream of consciousness, use haphazard typos be damned shorthand format like Lindsay Lohan or Roseanne (have you read their online stuff? Oh my god…) or just make it up as you go alone. I can link to cool things (music, authors, meditations, inane videos) that help me get through rough moments, like beyond brilliant SCTV and happy Alanis, that I hope can help others get through their tough moments.
Here’s my thinking on being HIV positive (I still hate saying that): I could die in a year, or in 30 years. I could be perfectly healthy for years or suffer and die from AIDS complications before my next birthday. I could also get hit by a bus tomorrow or die a cranky old duffer on a golf course. I refuse to think I’m different or handicapped or have to bend in any way because of some virus in my blood.
I won’t pay attention to statistics, or one doctor’s opinion, or the supposed future I face. Can you believe one provider early on told me, "and here's how the virus will progress in your body..." My God, I'm unique, not a statistic. Nothing is inevitable. Needless to say, I got a new doctor, pronto.
But I'm not made of steel. I often have mini-meltdowns on my way to doctor appointments (“Am I dying, did I wait too long to have blood work, what’s coming now, why did this happen??"), social phobias and a certain amount of creeping resignation over how most really people will treat me and my potential to excel in life, or especially, find real love.
Who’s gonna love me as I am now, right? Oh the trickery of the mind, if one lets it run wild, there’s no end to the misery it can cause…my mind is not the boss of me, not the boss, no…
OK, how'd I do so far? What are some of you--or your friends or loved ones--doing to live well and stay strong (in other words, click on the comment link below)?
I'm all ears...