“What’s wrong?” I asked her.
“Nothing! I just wanted to tell you the good news.”
But really she sounded bad and I was not optimistic.
“My doctors just called me and told me that my T cells are up. I have 15 now and last week I only had 9!”
For the last few months Froggie has made an effort to take all of her AIDS meds and go to her weekly doctors visits. At various points in her life, her health has been in real danger from secondary infections and yet it has always been a struggle to get her to comply with her doctors orders, even after weeks in the hospital she would refuse to swallow pills.
It is a source of embarrassment for me that I don’t know more about immunology, given my insistence that I am a biologist. Even worse, I’ve been caring for a child with HIV/AIDS for more than a decade and I still have to think hard about relative value when I hear numbers like “viral load” and “T cell count”. I was pretty sure that 15 was not a high number even for an AIDS diagnosis.
“How many are you supposed to try for?”
“It’s like 500 or something. That would be really good but I didn’t have any and now I have 15. The medicine is working!”
“Honey? Why are you crying?”
She really let loose with the tears and while it was hard to understand, it became clear after a minute that she was saying, “I’m just so happy!”
She went on to thank me. She missed her mom and wanted to be able to show her how well she was doing. She said that my mom and I had never given up on her. That even when she would fight and fight we still made her take her medicine and now she could do it on her own and every thing was going to be alright.
I cringe when she says things like that. I’m afraid that her body, after so many years of “non compliant” medicinal abuse will give up on her even if she really tries to stay healthy. Even a few bad days can send her into a funk that makes it seem worthwhile to her to attempt life without the hassle of trying to stay alive.
“I think that’s great. I’m really extremely proud of you. Just…there are going to be days when your counts don’t go up, or they go down a little and I don’t want you to be too disappointed when that happens. You know, life can be pretty up and down.”
I’m currently nursing my own disappointments and I realized as I said it that maybe I was projecting just a little. Or just a lot.
She smiled and I could hear it in her voice. “I know, but don’t worry okay? I know there is going to be bad things but at least I won’t ever again have the bad thing be swallowing a little pill. I can do that now!”
I catch myself trying to dampen her optimism more times than I like to admit. Here she is telling me that she feels like she made it over a huge hurdle in her life and all I can think is that I have to protect her from any and all other disappointing days to come.
Last year Froggie’s mom died. It was a horrible mixture of crack and alcohol and having exhausted the medical system. In the end her mother couldn’t speak because there was so much yeast and bacteria clogging her throat. Froggie was left alone in the house with her while she died slowly for months, most days unable to leave her bed. We couldn’t get the State to take her out of there, even when she used a razor blade to carve “I hate me” into her arm and underlined it twice. When her mother died Froggie was 17 and could barely read. She now lives on social services and food stamps. She graduated from high school and is learning how to cook, trying to practice her reading, and cleaning up the apartment after her brother. She has a life-long and life-threatening illness. She’s 18.
So there she was, telling me that she was having a great day because she had risen from about 2% to 3% of the T cells she will need to get out of AIDS and back to HIV. And there I was, trying to warn her about hard times because I’m 34 and my boyfriend dumped me.
I thought about what CNK said when I had asked for his impressions of Froggie after we had dropped her off at her apartment on my last visit home.
“It wasn’t what I expected. I mean, maybe it’s different out here…but at home in Alabama I haven’t had that experience with, you know. Like African-American urban culture isn’t usually so demonstrative…they were just so taken with you. I guess I didn’t expect them to be so demonstrative, and so taken with you.”
“Who are you talking about?” I asked him.
I was trying to remain open to him so I didn’t say anything about how much the term “African-American” bores me in any context other than academia.
“Who are ‘they’ or ‘them’? Those kids are my family. Of course they are taken with me, I helped raise them!”
Then I spent the next few miles reassuring him that I wasn’t uncomfortable with his comments when all I wanted to do was talk about how great both kids looked and how much better my heart felt seeing them after a long, hard year in Alabama. I should have known that he was headed out the figurative door then. I should have opened it myself before he could tell me that our relationship was mostly ‘fun’ and ‘convenient’ but not ‘sustainable’. My relationship with Froggie and her brother has often been extremely un-‘fun’ and the least ‘convenient’ thing for everyone involved. There have been times when I thought caring about them might literally end my ability to get out of bed, but somehow ‘sustainable’ has always been achieved. I think the difference must be love.
I tuned back into Froggie. She was off on a long story about her biological father and his second family. There is a Tweety Bird jacket she wants for her 19th birthday next week. The jacket says “Lady Diva” on it and she thinks that would be accurate and classy on her. She wants to learn how to make spaghetti because she already knows how to make tacos. Her brother is still working at the job he got last week and now she doesn’t mind cleaning up the kitchen after him because he’s really contributing. She doesn’t want him to buy her something for her birthday because they shouldn’t waste their money but maybe he could take her to the movies or to get something to eat in a restaurant.
“I just want to do something that is spending time with him. I don’t care as much about all that stuff that you buy because you barely remember that stuff anyways. Like when you used to take me for a ride on the ferries and we would have hot chocolate.”
I couldn’t help it; I had to smile because sometimes talking to her for ten minutes makes me feel like I’m co-staring in an Original Inspirational Story presented by Hallmark…but with a lot more drug abuse and real curse words.
Froggie and I ended our phone call with the promise of talking again soon, I-love-youes and hints about Tweety Bird birthday presents, which I rebuffed. I got back to my experiment. I wasn’t all better. I didn’t want to dance around the room yet. But I did stop thinking that I wasn’t going to make it to the end of the day and started thinking about what to have for dinner out with B. I could feel, just a little, my value climb.
She’s totally going to get that jacket.
