I haven’t written for a while. Sorry Bob, it's not because I can’t think of a topic; quite the contrary there are so many topics. For example, I kept agreeing with the consensus that 2016 sucked. However, in re-examining the year, I’m forced to admit that as a Long-Term Survivor (LTS) it was no different than the last ten years.
I lost friends. I’m still on disability which really limits one’s life possibilities. There’s a sense of depressing regularity which naturally I counter with anti-depressants. I’m confined and restricted in what I can do.
On the plus side, I’ve learned to budget, but life throws curves so I’ve also learned that’s its very important to have a good relationship with my Ontario Disability Support Program (ODSP) worker.
Additionally, you’ve Gotta Ask.
Living with HIV wherever you are, I can say without reservation that you are not alone. In some countries help is available from local health resources though these resources are slim in some places. In other countries AIDS Service Organizations (ASOs) provide help. The ASOs are trying to reinvent themselves now, I think. Additionally, assistance can be found through social media. There are groups on Facebook and Twitter for advocacy, information, and just a place “where everybody knows your name”. Health sites I recommend are TheBody.com and CATIE.
"I should have peace of mind logically but my skies are cloudy. Because as my HIV specialist says, “We don’t know.” Aging, plus all the medication over the years legal and not... hell, I’m surprised I made it this long."
My friends, whom I love dearly, try their very best to invite me on their social excursions, with the joke that maybe this time Colin will dehermit (my word). When I decline, they accept it, for which I’m grateful.
There are so many reasons contributing to my self-imposed social inactivity. Going out is expensive, the people in the posses I had in the seventies and eighties are gone. Add “survivor's guilt” and the death of disco and I’ll stay in, thank you very much. And no, it isn’t easy to re-establish those relationships. Which is why December and January are especially difficult for me and other LTS. And there’s not really a lot offered to do.
Even though I live in Toronto, Ontario, Canada with a remarkable HIV specialist and family doctor (I asked them about retirement and they assuaged my fears but I’m looking into cloning or cryogenics) there’s a cloud that follows me.
Like many others, I survived the “dark period” when I went for more tests than I care to remember. I now feel that I’ve gone through a wormhole because I’m a guinea pig once more. I’ve entered the Unknown.
My health team are taking a proactive approach, so my cognitive skills have been examined, prostate, colon, hearing all good. I should have peace of mind logically but my skies are cloudy. Because as my HIV specialist says, “We don’t know.” Aging, plus all the medication over the years legal and not... hell, I’m surprised I made it this long.
So how do I cope with all this shit? Surprisingly, my hermitting serves a purpose: it means I don’t have to interact on a personal level and share all this. I volunteer with a number of ASO’S in harm reduction and Homeless Outreach, I’m a public speaker on HIV 101, stigma and discrimination, I sit on a number of committees as well as serving on a Board. On occasion, I use substances.
So, that’s where I am. My wish list for 2017: adequate funding, no more infections, a mentoring program for youth and the newly diagnosed, a national information campaign and a frigging job.