Today I called to withdraw from a clinical trial I've participated in for a couple years. I'm not going to be specific about which study it is or where the clinic is, but the trial is a longitudinal study comparing relationships over time between living circumstances of low income-women with AIDS, their risk behaviors, adherence to treatment, and laboratory test results of bloodwork.
Appointments consist of the taking your weight, blood draws and check-ins about doctors and meds, health isuues and degree of disability, housing situations, and social support. There are interviews about psychological vantage points and emotional wellbeing. There are questionnaires about specific sexual practices since the last visit, and recent drug use.
The easiest part is the blood draw. The one-to-10 scale health issues questions confuse me. I have no idea what to compare myself to, so I have no idea what to say. And questions like "Would you say your health is poor, average, or excellent," are impossible to answer. If you are asking me as an ordinary person, I don't know. It's either poor or excellent, because it's not average. If you're asking me as a person who has lived with HIV for 21 years with an AIDS diagnosis for twelve of those years, then my health is excellent by far no matter what my body is doing, as long as my heart is beating.
Reporting all the drugs I have not done makes me feel like I have, without trying, done something "right," but reporting no sexual behaviors is just as difficult for me as having to describe them would be.
The same people have worked with me all along. They are very professional and matter of fact in a kind way, but also in a warm and familiar way. I haven't noticed how long the appointments take, but I have come out usually feeling kind of drained, but known and cared about. We are called in once a month and are paid thirty dollars per appointment.
I went in for my last appointment two Fridays ago. It was the first time I'd been in in a couple months because I had been out of town, in New Orleans. I got through one of the interviews more easily than usual and noticed that my answers seemed more emotionally stable than typical for me. A little more optimistic--or normal.
I had my blood drawn by a woman who had already known my name when I first started here, because she used to work at HIV Care, Ward 86, at San Francisco General. There are pictures of her sons on the wall, like there were there. She butterfly-needled my vein, drew several little vials of blood, snapped the needle back. She put the labled vials on a rack while she pressed the cotton on my arm, and then taped it. We said thanks and see you later.
The reason this was my last appointment was that as I went out the phlebotomist's door into the bright yellow-painted hallway, I saw at the end of the hallway a woman I will call Isabella. She stood in a circle of people who work there, but not with me. They were all laughing about some story. She looked the most comfortable of them leaning back against the wall, her hands behind her hips flat against the wall behind her. They (maybe six people, men and women) would have all been taller than she even if she'd been standing upright. She seemed, and is, very small. She was wearing a black shirt, jeans, a black belt, and black boots. Her hair was pulled back in a bun. She was smiling, and her face was flushed from a laugh.
My first reaction to seeing her was an adrenaline flood of fear. We'd unexpectedly ended a very long and strong friendship on horribly bad terms about a year ago, and I hadn't seen her since. I had told her to stay the fuck away from me which I've never said to anyone--and that if we ever ran into each other somewhere, I would be the one to leave. She was at the end of the hallway I had to go all the way down and turn right out of, right in font of them all, to get out to the waiting room to find out about what I was supposed to do next.
I was glad I saw her first, had warning, and that she was encircled. I went very fast thinking maybe I could get out without her seeing. I had a hint of thought that if I had to talk to her I would say something rushed about being late to an appointment. I had a hint of it in my head that that appointment was with my psychiatrist, but I wouldn't say that. I didn't know what else....
When I was almost to the door, she turned her head toward me, and looked up without seeming to recognize me. She is a therapist now so I don't trust her expressions (or lack of) to be real. I said hi without showing recognition the first split second but then the eye contact felt to me like time got crossed clean through and she was just Isabella, and I was just me. And I smiled carefully at the edges. But she gave a soft, flat, monotone, careless-seeming hi back with no response at all in her eyes. Not at all. I wouldn't be able to do that caught off guard so close and fast like that--I couldn't even do that with warning--but maybe she did have warning. Maybe she'd anticipated that we might run into each other at this place, her place now, and planned it this way--thought it through ahead of time. She was tired of HIV last time I knew. So I thought I was safe. I hadn't anticipated she'd be here on any terms. Maybe didn't just know these people somehow related to her work. Maybe she worked here now. Maybe she'd even seen my records.
My reaction at this point, along with the adrenaline, was overwhelming relief that she was alive. She hasn't been positive for as long as I have, but she's had HIV a long time. And the last I knew her T-cells had come down to not much higher than mine and she'd said, "I just don't feel like putting those poisons in my body right now," about the medicines she was advised to take, and that she knows I take to stay alive. (It hadn't seemed to me that she was very sensitive to other people for becoming a therapist.) I was hoping she'd go back to meds when she was ready, but I couldn't know anymore. I couldn't tell at all whether the people around her knew at all.
I was glad that my reaction to her looking so good was relief before it turned to envy and self-consciousness. (In the tangled mix of all the reactions to our friendship's breakup had been fear that she would die and I'm not even in contact with any of the people we used to know in common, and I wouldn't even be told. How can you resolve anger and personal hurt from a fight when it's mixed up with that?)
Her face was rosey. I know my palor. She didn't have circles under her eyes like I do. She was wearing make-up; I wasn't. She was being some kind of professional, whether visiting or staying. I was wearing flip-flops and coming out of a nice interrogation about the most personal things of my life as a low-income woman with AIDS, with my cotton ball taped to the vein of my arm, going to the waiting room to pick up my thirty dollars and get my instructions for the next part.
The eye contact between us lasted the amount of time it would take for two people who didn't know each other saying hi in a hallway. She broke it and ducked her head and pushed herself up away from the wall, and even raised her hand to shield her face and bent her body straight forward, a thirty degree angle forward into her circle of peers as I walked the last steps toward them and turned right and got out the door.