I hate when I wake feeling this way: like I’ve done 10 sets of lunges in 4 inch Manolo Blahnik’s; like I hadn’t been to sleep in two days; like I’ve been flipping burgers for twelve hours; like lifting my body is an effort; like I want to sit in a chair while I brush my teeth because each stroke of the brush makes me just want to lay my head on the sink.
I hate this thing that HIV/AIDS does to me that I can’t describe or explain no matter how hard I try. Over these years, when people ask how I’m feeling, I typically say, I’m moving slow, I’m struggling or I’m having a bad HIV day. If it’s really bad I do say, I’m not feeling well. But those answers are inadequate and people want to know what that means. So inevitably I get asked, “What’s wrong?” Even my closest friends, after years, continue to ask, “What’s wrong?” I want to shout it from the top of the roof: I have NO freaking idea or my brilliant self would’ve named it nineteen years ago! STOP asking me that stupid ass question and making me give you a stupid ass answer! For Real! For Real! We have traveled this road before and it’s frustrating. I know the underlying theme in this question is: how do we make you better? But it ain’t getting no better, so man-up, like I do. I have AIDS!
Since my transition to AIDS nineteen years ago, I’m guaranteed to wake with this indescribable feeling one to three days a week. If I’ve had a busy week, like last week, (speaking at the University of Wisconsin at Madison and then the Red Pump Project event honoring me), it’s even worst. When “it” first began, as usual, I went straight to the doctor. The best explanation was that HIV causes fatigue. The fact remains, no matter how healthy I look, the break neck schedule I keep, or the work load, my workaholic self maintains, I have no immune system. This means that my body does not work properly. The end result, among a list of things, is this fatigue.
When my T-cell count started to improve over twelve years ago because of advancements in treatment, the assumption was that this condition would also improve. But that has not been my case. That has been one painful reality. This is just another way AIDS intrudes in my life. I don’t like it but there is nothing I can really do medically to change it. A regular workout schedule does mildly help, but that is not always possible. Adjusting is what I have had to learn to do. Learning to adapt to this fatigue means different things on different days and “it’s complicated,” just like loving a man. For Real!
Passover dinner with my girlfriend’s family because it required more effort than I could muster up. However, her daughter’s Bat Mitzvah was a once in a lifetime event, so I pressed my way through. It’s the balance that I have learned to live with. I painfully accept the losses that come with this disease but I never surrender all of me. This means when I lay around the house, I at least brush my teeth, shower, put on clean PJ’s and earrings before the day is over. Diva Rule!
bracelet line and the blog I have added to my plate it’s over flowing.
As I write this post, I’m literately sitting in bed with the laptop. I will admit that in a moment of self-pity I was thinking it would be nice if someone knew what was in my heart and mind and could write these posts for me. But reality always sets in. It is only me. My curse... My gift… My call... My life! At the end of the day, AIDS is not going away. There is no cure. Yes, I’ve been blessed with years beyond my understanding, but this does not change my daily struggle.