Hi ladies, it's been a long while since I've checked in or written on my blog. Life's been busy, a lot of things have changed for me. Things I thought I would never see.
I was 18 when I was diagnosed with HIV, that was 1989. At that time there was no hope of survival past six months, so all my plans and dreams were destroyed. I can say now that that was a traumatic experience for me, although I was used to being let down and forgotten. At the time I showed no fear in the face of HIV. That's what my life had taught me. Show no fear and stare them right back in the face or else they'll squash you. Those were hard times and while they were not what a typical teenager grows up with, it molded me into a strong young woman.
I obviously made it past six months with an HIV diagnosis. After waiting for several years to die, waiting for the "other shoe," I have kept going and decided to take a huge dive...several in fact. Part of the reason I have been off the radar so long is that I finally got my Bachelor's degree. I get tears in my eyes just saying it. All my life I was kept down, told I was stupid and not worth it, shoved away, and when I thought I was finally worth someone's love and attention, they'd pull the rug out.
Having HIV has had an impact on so many decisions in my life. Deciding I couldn't get a degree was a major one. But then one day I just got sick and tired of waiting for the next HIV-related disaster and just went for it.
I had a bout with some kind of dementia in 2000 that really made life difficult for several years. None of my doctors could figure out what was causing my severe fatigue and memory loss. All cognitive skills were just terrible. I was told I'd be a vegetable and was put on disability. Well, I thought that day the "other shoe dropping" had finally arrived. But the more tests they did and the longer I had to depend on others for help, the more mad I got and the more determined I became.
I fought that dementia with everything I had. Reading used to be a favorite that I did every day for hours. But not with this horrible brain thing, reading became painful. I couldn't keep my eyes open for even a paragraph in a children's book. I couldn't focus on anything, couldn't remember the things I needed to do, where to go... I got lost going to the local supermarket I'd been shopping at for over 15 years. I slept and slept. Had to get rides to appointments and errands.
For two years I fought this and I overcame it to a degree. I read kids books until I got tears in my eyes. I made lists of everyday things I should be getting done, but no energy or focus to do them. I found a doctor who told me Ritalin would help me and I thought he was nuts! But he convinced me to try it and it worked wonders. I think it saved my life, because that really helped me turn the corner. I was able to focus and remember things much better with it. I've been on Ritalin faithfully for years and it has really made the difference.
I got my Bachelor's online with a great university that also has a campus in my state. I preferred the online learning because I could move at my own pace somewhat and reread or redo things that my brain needed a little extra time to absorb or decipher. I graduated with Honors.
Now, I have my own business. That was another leap I took... I started my business just before this Covid 19 saga started. When Covid hit, I worked really hard to stay afloat. It's been a really rough ride and I'll be making payments until I'm 100 but I am still afloat and things are better now.
During the Covid epidemic I got really depressed. Worse than usual. Even though I was fighting to stay afloat to pay bills, there was another part of me that was drowning. I take antidepressants, and I just thought maybe they aren't working anymore. Sometimes that happens and I've had to switch it up a bit. I spoke to a mental health provider and she said that a lot of us HIV'ers have gone thru a sort of re-traumatic event with this pandemic. A lot of us have self-isolated over the years and we have adapted to that. But something with this pandemic has triggered the original stigma and isolation event in some of us. Maybe not on the surface, but our brains are so complex that it may not be boldly apparent at first.
While I was chatting with this female mental health person, she told me that she has a women's HIV group that was meeting monthly before Covid hit the fan and asked me if I'd be interested in joining when things were safer. I told her sure, but the one thing she said to me that really hit me was about when she was first getting this women's group together. She told another female client with HIV that she had this women's group and would she like to join. The client's answer was, "I thought I was the only one."
This to me, ladies, is how I often feel, alone and wandering in a crowded room. As I age, I fear what will happen to me. I have no family and very few friends. I have isolated as a self-preservation reaction to my HIV and society's stigma. I don't want to be homeless like when I was a kid and die in some dark lonely place. I know that often women compete with each other. I don't understand this as an adult, although I have run into it from time to time. But with what we're facing as we age and even just day to day, there shouldn't be a competition or a one uppage. Women should lift each other, we should rally for one another.
I've decided to connect women together who are trying to help us. If I speak to a practitioner or researcher or therapist or community worker who has anything to do with helping women with HIV as we age, I am connecting them. I'm making a list and connecting the dots. I am urging you to do the same. Tell each other about the connections you have made, don't compete for them. Lift each other up and offer a connection of help or a connection in the right direction. Someone out there needs that, just as you may need it or have needed it.