The Hardest Part of AIDS....

I sat in the back of the taxi yesterday as the tears flowed from my eyes. “Pull it together girly,” I kept telling myself. But no matter how hard I tried, I just couldn’t. “Here I go again. Here I go again,” I mumbled through my tears. I had just left the hospital having a PICC line placed in my arm and no matter how often I’ve had it, I never seem to adjust. For me it is the signal of the grueling task ahead of me: intravenous (IV) medication for however long it takes. The last time, just 3 months ago was for 23 days.

It’s the world of AIDS that is hidden by my fancy clothes, my hard hitting message and my overachiever attitude. But no matter how hidden the pain of it all may be, for me it’s the hardest part of having AIDS. Yes, I Facebook and Tweet about being on an IV, but I sometimes even wonder if people really understand. This time, when I discovered that I was going back on the medication, I decided that I wasn't going to talk about it publicly. Not that I was ashamed or anything, but I’ve been working on a social media project and pitching it to sponsors. I didn’t want them to stumble upon a tweet and think that I was too sick to deliver. Then I thought about it. I am sick whether I’m on IV medication or not. I have AIDS! And I also have an awesome ministry wrapped around this horrible disease. For me, there is not one without the other. If I'm going to get sponsorship and support, they can’t have the glamourous AIDS Activist without the AIDS.

So today I will begin blogging about the Hardest Part of AIDS for me and chronicle my journey on this IV medication. It began this morning when the home health nurse asked, “And why are you on this medication?” I explained that I have an infection that was resistant to oral medication, so this is my last resort. “I see,” she said. “And why is this infection so resistant?” She asked slowly. “I have AIDS,” I said matter-of-factly. And then it came, the look that said, “How did a nice girl like you, living on the Gold Coast, end up with AIDS?”

I bet no one ever had that thought about someone with diabetes or cancer or lupus or heart disease. Exactly! But nevertheless, we are so quick to compare HIV/AIDS to any other illness. Implied in that comparison is this: Having AIDS is no harder than any other illness, so what’s the big deal? But if we are honest about it, HIV is not just like any other virus and AIDS is not any old other disease. They both carry a social stigma that weighs down heavy on ones heart and spirit. It’s enough to have to deal with the daily routine of managing ones health but to be weighted down with the stigma of it all is all too overwhelming.

So this morning I gave the nurse no room for discussion about my life. There was no defense against her silent moral judgments that spoke loud and clear through her mannerisms. Today was not the day!! When I awoke, I was so fatigued that I didn't want to brush my teeth, and that was after 11 hours of sleep. I had a very sore arm from the PICC line placement and my skin around the bandage felt like I had second degree burns. I knew what was ahead of me, a two hour IV drip this morning and another two hour drip tonight. It would also be the beginning of side effects like nausea, diarrhea and more fatigue. I decided to save what energy I had for me.

Today I choose NOT to defend the incredible Black woman that I am. As the nurse was walking out of my door, with her eyes wandering around my apartment, she said, “Your art is beautiful” “Thank you, I've been collecting for about 20 years now," I said to her. She paused expectantly. I knew that she wanted more, but today was not the day...