Part Three of Six
For a while now, I am sure people have been wondering, what the hell is wrong with Jasmyne? Or where is Jasmyne? Why isn't Jasmyne speaking on this issue or that issue? For a time, I wondered the same thing. So, I am going to try my best to tell you a story. This is my story, a true story about love, denial, shame, anger, and just living life. While what I am going to share with you happened without a commercial break for me to catch my breath, I can't relive it that fast and so I am breaking it down into parts. Talking about it is still too hard for me and to be honest, it's even harder for me to take this first step and open up about my personal life in this way and on this subject. While writing for me is a sort of therapy, in this instance it's helping me take the shackles off with the hope of helping others do the same. Through my story I want to empower other people going through the same situation as well as shine alight on what many of us believe can't ever happen to us so that when it does, we know how to deal with it. All of us are susceptible—even me and even you.
Related: Part One, Part Two, Part Four, Part Five, Part Six
Part Three: Deep Cover
I don't know what I expected from my friend after I told her we knew. I had so many questions I wanted to ask her.
How long did you know? Who did this to you? Why didn't you tell me? How long have been off your meds? Have you ever taken the meds?
But I guess if you're so used to living a lie that you have to constantly repeat over and over, it's not that easy to come out of it.
So even though she knew I knew she wasn't, let's say, forthright or free flowing with the information, if you know what I mean.
So I just let it be. Right now, we both needed to focus on getting her healthy again—if that was even a possibility. At this point I really didn't know.
What I did find out was that apparently her right leg basically went numb and I guess her mom had stopped by to visit her—because she was keeping herself basically hidden away from everyone. Her mom saw her and took her to the nearest hospital—again under the illusion that her daughter was suffering from "stress-related" health problems.
At the hospital my friend never told them her status, so while they were wasting time testing for this and that, she just let them knowing all along what was wrong. Why? Because she couldn't let her mother, her "up in the front pew, every Sunday church going, sanctified and holified" mother know. She would rather die first, and was well on her way to doing so if you ask me.
Well, sorry, I can't play that game and I told her that I was going to tell the doctor and the nurses immediately.
She almost had a heart attack.
I had to explain to her that they couldn't tell her mother anything because of patient confidentiality. I had to explain that they weren't going to treat her like a leper and that she wasn't going to be shipped off to some remote area of the hospital and left to die alone.
She didn't believe me.
It took some convincing to get her to the point where she would let me do it. I had to. We were wasting valuable time and according to my friends who work in this field, they don't always test for HIV when a patient comes in so it can be overlooked.
It was.
Once I told the RN, it was like, ah hah, okay now we know what to do.
My friend begrudgingly signed papers at the hospital to allow me to make decisions for her and for the doctors and nurses to talk to me. I was her "sister." The lies continue.
I, in turn, made sure all of the shifts knew not to speak freely about her illness in front of her mother when she was visiting. The code word for her HIV pills became "vitamins."
The infectious diseases doctor asked me to go to her house and bring back all of the "vitamins" I could find. I did. It turns out, she had "vitamins" hidden all over the place, even the refrigerator, which I overlooked on my first visit there because I thought the brown bag was just some leftovers. I guess that made God mad, so he made sure I couldn't overlook the "vitamins" stashed in the hamper.
Some of the medicine was no good but most of it was still good. Turns out the hospital didn't have any of her medicine there and so they needed it.
Her liver and kidneys were being tested—for what I didn't know. She needed an MRI. Her leg was still numb, and she had a fever. She had a rash of some sorts on her top lip but it eventually disappeared.
I practically moved into the hospital with her and only left when I had to.
Of course, being who she is, my friend started to worry about her job. I told her that she's in no position to work anyway. But she insisted that I go to her job and get her check and talk to her boss and tell them that she was sick and would be back soon.
Now I knew that wasn't happening. Even if she was released from the hospital today, she wasn't going to back to work as a nurses assistant in an elderly care home. Her immune system was too vulnerable right now. But because of the economy and the pressure we place on ourselves, even from a hospital bed, we're still concerned with keeping our jobs over our own health. It's a sad world we live in.
I did go to her job, and I did pick up her check. I explained that she was in the hospital to her boss and I left my card if they had any questions or concerns.
As the days went on, I got more and more information out of her.
She mentioned a doctor at a clinic in Watts. She said she couldn't remember her name only part of it.
I knew the clinic. It was the Oasis Medical Clinic at Charles Drew University. I went there and explained the situation in hopes that her doctor, or any doctor, could come and see her. The lady at the window was less than helpful and actually said to me "what do you want us to do?"
I think sometimes people look at me and don't assume I will grab a person by the collar and pull them through the sliding glass window that separates us and beat the crap out of them in a time of extreme crisis and when I am emotionally unstable.
Lucky for her, I caught myself.
Instead, I made a few phone calls above the lady in the windows pay grade.
I don't have time for people's crap when there is a life at stake and she doesn't know who I know and what lengths I will go to for my friend. I'll deal with her later though.
After I was satisfied that the information was going to be relayed to the right people at Oasis, I went back to the hospital and tried to get my friend to eat. I brought her fresh fruit and something from Denny's.
She smiled and she ate. Only a little but it was a start.
She was eventually transferred to a larger hospital and that made me really happy—sort of. I didn't care too much for the reputation of the hospital she was going to, but it was bigger than the one she was in, so I thought maybe bigger means better. Sure the staff at her current hospital were nice, in fact one nurse in particular, Charlie, really went out of her way to help my friend. Because I was there all of the time, for the few times when I wasn't there, the doctors would ask my friend, where is Jasmyne? They made sure I was always in the loop but they knew my friend needed more help than theywere prepared to give at their facility.
My friend, living in her own special world of shame and embarrassment, thought she was being transferred to an AIDS ward to die and had to be talked off of the ledge so to speak.
I was there when she left the old hospital and was there when she arrived at the new hospital.
I went through the same routine there with all of the nurses to make sure her privacy and "secret" was safe.
At this point my friend is really fighting for her life. I didn't know how bad it was but I knew it was bad.
I consulted with many people in the HIV/AIDS arena about her situation because I just didn't think that the hospital's nurses and doctors knew what they were doing. I'm just being honest. You can tell when someone is out of his or her league, and some of the nurses there didn't have a clue and that's just being real.
Some of the people I spoke to were helpful, many weren't. But for those who actually gave a damn when I called them in my frantic state of mind and talked me through next steps and what to do and who to call, I will forever be grateful. Paul, Phill, Vallerie, Wendell, Carrie, LaWanda, and Glenford---thank you so much for being there for both of us.
Some of what you told me scared me so bad I was angry about the bluntness of the delivery of the news, but I know that it had to be explained in such a way that I understood what I was dealing with and what to do. For those of you who made phone calls on my behalf to certain people to get the ball rolling for my friend,again, thank you.
Throughout this process, I had to learn about HIV/AIDS all over again. Yes, I've been active and vocal in speaking about HIV testing, prevention, and the stigmas faced in the African-American community. Yes, I was the communications director for the Black AIDS Institute at one time. But I realized that what I thought I knew about HIV and AIDS, was not enough in this situation.
Thanks to my friends, I learned that I needed to request an infectious diseases doctor for my friend. I learned that I had to ask for my friend's T-cell count and viral load. Numbers that I didn't really want to know but knew that we needed to know. You see I had a bit of my own denial going on because I knew the lower the T-cell number and the higher the viral load, the sicker my friend was. T-cells are basically white blood cells and are cells of the immune system involved in defending the body against both infectious disease and foreign materials. They basically protect your body. Your viral load is a measure of the severity of a viral infection and tells the story of the amount of virus in your body.
I had to ask about cancers, failures of organs, and her central nervous system.
All of it scared me because there were so many tests and waiting on the results of those tests was enough to drive both of us insane.
We both knew that what those tests revealed, would dictate the next chapter in her life. And at this point, it's just her and me, because she was in no way about to involve her mother or any other member of her family.
So we eat, we watch TV, we sleep, we reminisce, we laugh, and we wait day after day—no one tells us much of anything.
She's back on her meds or I should say "vitamins." The side effects are horrible. Watching her go through them is hard but I stay strong and refuse to show my true emotions around her. We will go through it together.
I begin to notice her mental state is changing. She becomes very forgetful and combative at times. She hates me, then loves me.
The meds bring on a wicked fever that brings on some form of dementia. That wasn't pretty. But I remember thinking, at least we're at the hospital going through this.
She's still not eating much and she's still got an IV.
This goes on for days and then one day, the nurse comes in and says we're going to send you home today and I'm like, you're going to do what?
[Chosen as one of Essence Magazine's 25 Women Shaping the World, Jasmyne A. Cannick is a political communications strategist after having worked in both the U.S. House of Representatives and the California State Legislature. She is also a radio and television political and race analyst and freelance journalist. Follow her on Twitter @jasmyne and on Facebook at /jasmyne.]
