Well, this blog is long overdue.
It's World AIDS Day 2015 soon and the holidays are upon us. I just returned from the 11th annual HIV cruise retreat. It's taken me a moment to catch my breath and organize my thoughts as I truly found the experience both exhilarating and exhausting.
The hustle and bustle of the fall is here. Each year this particular time and season is busy for any parent; but this year not only do I now have a married 20-year-old with a new daughter-in-law, but I have an upperclassman in my youngest son and a new college freshman in my daughter! I would say this school year is as busy as ever for the Arnolds.
Last month I celebrated twenty-two years since the day I found out I was HIV positive. My long-term memory is so shot but I do remember a lot of things about that day. It's a date that never goes unmarked by me. It was a cold, rainy afternoon in Lancaster, PA. I was scheduled to work the evening shift at Community Hospital in the ICU as usual. The Employee Health Department had called me the day before and told me to stop by and get my test results from the needle stick injury I had received approximately six months earlier, on Sept 9, 1992. I was undergoing routine post-exposure testing. This was no big deal. Once I cleared this hurdle I would have one more test to go at the year mark. It was that simple.
Well, January is almost over as I write this and it's been a crazy end to 2014 and a wild start to 2015. I've been hospitalized several times already and have had some major life changes, some good, some bad and I'm learning to roll with the punches. The end of the year saw my oldest son get engaged and we had a huge party to celebrate. He's in the Marine Corps and as we welcomed his fiancée into our lives I couldn't be more proud of both of them and it feels great to be here to celebrate that milestone in his life.
My favorite song for this year is by Taylor Swift "Shake it Off." I love the music but I especially find the lyrics fitting. She sings about finding your own beat, doing your own thing, dancing to your own music and shaking it all off! Letting the players play and the haters hate! My future daughter-in-law and I went to the West Hollywood Halloween Carnival this year and she was both startled and upset by the small group of assembled protesters. She stopped to listen as they spewed their hatred and read their hideous poster board signs all as a slight drizzle started to rain down upon us. She wondered why I was not intrigued. I explained that I have been at plenty of events where they had gathered and they were old news. I learned to ignore them as most of the crowd was doing. Why give them the time of day. They were always present at the AIDS WALK as well. Their words were nothing I hadn't heard before; their methods were nothing new.
Moving on from October ... finally feeling better, glad to be home here in sunny California and starting to feel the seasons change! Yes we have them -- don't let people tell you otherwise! It's the month of thanks and I have a ton to be thankful for. I guess it was that coming-to-Jesus meeting in the hospital when my fevers were so high and I literally thought "OK, God, I'm not gonna make it am I?" Well, since I did make it out I have turned a new leaf. I'm taking my meds. My numbers are going up -- not quite undetectable but pretty darn close. Not sure I need to be and not gonna stress over it really. Doc is happy. I'm happy. Trying to see if I can stabilize off the Neupogen and clear the neutropenia. To rid myself of twice-weekly injections right now would be pretty cool!
Wow, I've lost count of the days. Somewhere around 45-50 I realized that, gee, I had been hospitalized for a long time. I didn't even know hospitals kept you that long anymore; then just about that time that my reality became clear, I got transferred to another hospital which focused on rehab and short-term IV care. Then finally -- and I mean finally -- I went home. October is about to begin. When I entered the hospitals we were in August.
I had no intention of dwelling on my first piece about my memory loss. Yet I have been overwhelmed by the email response I have received from infected men and women literally from around the world. Readers have opened their hearts, minds and souls to me, most in search of understanding and compassion. People have written due to the stigma and embarrassment and fear that they face in the admittance of their own memory loss issues. I truly had no idea it was such a large issue affecting so many. I selfishly thought it only affected me :-) -- well not really of course, but on a really bad day that's exactly how I feel.
Sometimes people ask me what's the worst part about having AIDS. Over the years my answer has changed dramatically depending which symptom I was facing or side effect from the medication was particularly cumbersome. Right now, however, the most debilitating in my mind is my horrific and progressive memory loss. I don't remember how long I truly have been battling this but I do know that in the past two years it has risen to a crisis in my mind. People try to make me feel better by paralleling my experience with theirs due to age or depression or menopause. It doesn't really help me. Most times it just makes me feel more distraught.
I love Spring! It's my favorite time of the year. I actually find people to be a little friendlier: they smile more, they are more relaxed, their eyes are brighter, their steps are quicker, there's a lilt of happiness in their voice.
However, I'm not so sure it should be my favorite time. April 7th was the day I found out I was HIV positive.