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.
It's been said that you aren't a true Angeleno until you have your first traffic accident on our freeways. Well without having a true competition in our household, the fact remains that I beat my husband in this category by approximately six years. He was just indoctrinated this past week in his own five-car pile-up. Luckily in both our cases no one was seriously injured, but the sight of the ambulances, fire crews, police cars and navigating multiple cars to the side of the freeway in ongoing busy traffic is unnerving itself. Then there's the damage to the vehicles, the insurance claims, the inconvenience of repairs, rental cars and any out-of-pocket expenses. Needless to say it's a hell of a way to become a true Angeleno!
2014. Wow. Just looking at that number in print can be astounding for many. For me truthfully it makes me both excited and just really really tired.
Christmas is my favorite time of the year. I adore the holidays. I love the music, the good will and the happy spirits. I like to plan and deliver the gifts that I give to my children. I participate in toy drives with a loving heart and I always try to remember what the season truly is about.
I remember a few years back when my oldest son had become quite a handful as he entered his teen years. In between his monosyllabic grunts and barely audible moans we were supposed to interpret his needs or better yet be amazingly adept mind-readers just to get through each 24-, no make that 12-hour, time period. He came out on the other side of those years OK and is doing really great. We as his parents wear our badges of bravery and show our scars proudly, especially in front of our 14-year-old son, as if to say, "you try any of that S**T, we have YOUR NUMBER ... Don't even think about it Bucko!!" So far, so good ... but really the parenting season has only just begun. It gets harder as they get older, we have found; don't let anyone convince you otherwise.
Wow! I can hardly believe it's the end of October; Halloween is upon us and fall is in full glory! Living in California and being born and raised on the East Coast, I miss the change (the true change) of seasons and all the little smells, feelings and beauties it provides. Granted there were plenty of times I didn't appreciate them then but like other losses along the way, I sure do now! Living the LA life has made me a wimp when it comes to temperature changes. The rain and fog here are felt in my bones and the cool dips of temperature in the evenings at times make me want to break out that old winter parka!
I'm not sure where to even begin this blog today. Since finding out I have HIV dementia, it seems my life has literally turned upside down. I've suffered through several losses of my independence. However there have truly been some really comical moments. Most have seemed funnier when I stepped away and looked back at myself not when I was right in the moment. However my friends and family members found them hysterical at the actual time they were occurring.
I have three teenagers, 18, 16 and 14. If I could, I would probably want to lock them away in some high tower and let them out after their teen and young adult years passed by so that I could enjoy them fully again and I could know that the risks in their lives could be minimized once again. Did you know that the average brain is not even fully developed until the age of 25? Yet teens every day face enormous challenges in decision making coupled with peer pressure and insecurity and many times can't even pull from the recesses of their brains to help them make healthy, and positive choices. When my friends and I say that we are raising our teens as a collaborative process, we mean it. We are living by the slogan, "It takes a village to raise a child." In our case it may be a virtual village, but it's a village alright and one I'm not sure I could live without.