I was diagnosed some time between Valentine's and Easter of 1986. The exact date is lost, but I do remember I got a Dear John letter from my boyfriend around Valentine's and I was starting to have symptoms of shingles then (which is what led me to get tested) and when I came home from the doctor's my room-mate was making an Easter bonnet. The lab forgot to do my first test, so I went to a different hospital, and I think it was near Easter I finally got the results ... more than a month from the time I'd gone in.
It's an awfully long time to be poisonous, and hard to have survived all of my friends, but I have been relatively free from physical suffering. The stress of hearing I might have a year to live to "as much as three" to "possibly up to ten" to "some people make it to fifteen" etc is a mindfuck. From today's perspective, I can look at all the things I "should" have done and see how silly/wrong/stupid/damaging it was to worry, but I'm surprised I haven't learned more from the experience. It's as if my capacity for emotional development was arrested at that moment when I was 23 and I've been walking around half dead ever since.
To bitch about it to anyone who didn't live through that era sounds a lot like someone who'd complain if they were hung with a new rope, but it's not the "being alive" part I'm struggling with. I haven't dated in 15 years - some because I fear transmitting the virus, some because I'm pretty shut down socially, and some because I'm physically out of shape and I feel too gross to be intimate with anyone. I haven't found an anti-depressant that works, and I've been on over 30 different psych meds, and though I've been for two consultations for ECT, I chicken out before I go through with it. I didn't prepare, financially, socially, professionally, physically, or mentally for old age. I was doing the things senior citizens do when I was in my twenties, like going to my friends' funerals, talking about medications and bowel movements, and not pursuing anything I didn't think I could reasonably commit to staying with like a college education or a relationship.
I have a lot of rage to work through. It ticks me off to be "congratulated" on surviving, or to be told I must have "had the right attitude" because I'm still grieving for my friends and I feel guilty for not knowing that I had so much time. It feels like I betrayed them by not living the lives I know they could have lead. Inevitably, someone will say something like "Nobody knows when they're going to die!" or "Live each day like it's your last!" but I know, living it like it's the last means staying very still and not getting your hopes up.
I'm writing this here for me, so I can vent, and I figured there might be some long-term survivors who can relate. But I'm also writing it to say that, especially with all the treatment available now, it's not necessarily a good thing to be ready to die. Write your will, tell your Mom you love her, and maybe give a little extra consideration to "lifetime memberships" to anything, but otherwise prepare for the best.
