Excerpted from Inside this Place, Not of It edited by Ayelet Waldman and Robin Levi. Published by Voice of Witness Books.
It’s Like You’ve Been Put in a Little Box
Out in the world, when you get a diagnosis of a serious disease like this, you would go get a second opinion, just to be sure. But in prison, that isn’t an option, so you have to rely on their diagnosis. You have to trust them. That’s what I did, and look what happened. My advice, even to people in the free world, is to be your own best advocate. Do your research, get on the computer if you have access to one. Try to find out as much as you can, and make sure you get a second opinion.
My liver has gone through the stress of processing HIV medications, which can cause damage. But I don’t even know if there has been any damage, because they won’t test me. So I’m trying to monitor my own body to see what the effects of the drugs have been. I’ve had a series of problems which may be related to the HIV treatment, and may be related to my many years of drug abuse. For example, I’ve had my gall bladder out. I also have neuropathy in my legs, which causes terrible pain. I don’t know the cause, but many other HIV-positive patients I know experience the same kind of pins and needles in the bottom of your foot where you can’t even step on your foot. I wake up at night sometimes because my whole leg feels like it’s going to crack off.
It took nine months for the decision from the hearing to come through, during which time they kept sending my forms back to me, telling me the wording was incorrect or the filing dates were incorrect. Because I had to go through this process before even considering a law- suit, I resubmitted three times, but each time they’d send it back, claiming there were clerical errors. But during the process I had a public interest attorney from the prisoners’ rights group Justice Now with me, so I was sure that the forms had been in perfect order.
In the end, the prison refused to accept responsibility. They blamed the mistaken diagnosis on the lab, and told me to go ahead and take it up with them. I tried to do that, but the lab was closed down by then. It turns out it had been shut down by the government because it was falsifying tests.
I also have, for years, been testing positive for tuberculosis. Each time they say it’s a false positive. When I had the HIV diagnosis they would say that a false positive was a side effect of the disease. But now, I don’t know why I keep testing positive.
I also have these ongoing gynecological problems that won’t clear up on their own. I keep testing positive for vaginal bacterial infections. I’ve had Pap smears that showed abnormal cells, which they diagnosed as a bacterial or fungal infection. They’ve given me a variety of medications for these vaginal problems, including medications for herpes, despite the fact that I did not test positive for the disease.
Even when I catch a simple cold, I can’t shake it off like my roommate does in three, four days. I carry it for about ten days.
I’ve also tested positive for hepatitis C, and for many years was considered a dual-diagnosis patient. Since the HIV diagnosis has been disproved, sometimes I wonder whether the hep C diagnosis is accurate. But according to the prison, I’m positive. They won’t treat me, however, because interferon is not available for women like me, who have less than a year left on their terms.
More than anything I’ve gone through in my life and in prison, this medical stuff has messed me up. If you live in the free world, I don’t think you can really understand. When you’re in prison, it’s like you’ve been put in this little box, and little slips of paper are put in the box with you, with pieces of information. You can’t verify it, you don’t know if it’s true, you don’t know what to do or how to act. And worst of all, there’s no way of you getting out of this box. You just have to keep breathing.
“Excerpted from Inside this Place, Not of It edited by Ayelet Waldman and Robin Levi. Published by Voice of Witness Books.”
 Valium and codeine are both prescription medications that can be used, and are often abused, to affect mood and relieve pain. Because of their sedative affect, they are also referred to as “downers.”
 Phencyclidine, a synthetic drug also known as angel dust. Users experience distorted perceptions of sight and sound, and symptoms resembling those of schizophrenia, including hallucinations and extreme anxiety.
 An antiviral medication used to treat hepatitis C.