As the Women's Services Coordinator at AIDS Project Los Angeles, I have the pleasure of meeting many interesting and diverse women, who, like Kimberly Howard, bring a wealth of perspective and personal history to both the conversations and in particular, the Women's Program. My conversations with Kimberly are comfortable and easy, her natural inclination is to help and be there for others, this is evident in her honest, open answers to difficult questions at a difficult time. Kimberly is a woman with obvious passions, a love of children and a drive to educate and support others. I greatly admire both her courage and her willingness to reach out, even at a time when she is anxious about her health. This is Kimberly's story.
How did you first receive your AIDS diagnosis?
From '93 to '96, I was having thrush, night sweats, fevers and vomiting -- everything. My primary internal medicine doctor kept telling me it was my imagination. I was taking blood tests for HIV because I had in fact been with a bisexual person but they kept telling me there was no way I was sick, it was all in my mind and I was making myself sick.
In '96 I was engaged to be married and went and had a full work-up and they said I was fine, and could have children and everything, but then I got sicker and couldn't get out of bed. At that point I came back home to my family. Eventually I wound up with pneumonia, and they took me to County Hospital and I was there for a week. The first test I took there came back negative for HIV. One week later, I was diagnosed with full blown AIDS.
Do you know if you have a strain of the virus that is undetectable on regular HIV tests -- the ELISA and Western blot?
No, they haven't a definition for it.
They sent me to 5P21...I started seeing Debbie Johnson, P.A., in February and the way she put it to me, it really stuck with me. She told me I could either take my meds or I would be gone. I had no choice, I couldn't play anymore, I could take no more chances because of the fact that I was so low. But now in the past year I have worked very hard to raise my T-cells and I'm up to 597.
[A hospitalization in early June for severe weight gain and swelling] is the first major complication I've had since being diagnosed and it kind of boggles my doctor because they really haven't got enough data on women in my situation...
How does it make you feel?
[When I got my AIDS diagnosis], I cried for two reasons. One, I knew I was not crazy, and I finally had a name for what was going on in my body. That was a cry of relief!
And the second [reason] was that I thought: "Oh my God, there go my chances of ever having children." But now that I am aware of what I can do to have a child and the steps I am taking to make it possible to do this, I feel more confident. Having a child in your life is so important. I think when people say, "you're sick, you shouldn't have kids," that's totally wrong. I think that if you have love in your heart and you have it to give to a child then give it to them as long as you can. That child is not going to hate you if you pass away, the child will hate you if you never loved them. You give all that you can.
Is family support partly what keeps you going?
I would not be here without my family. God, my mother -- she's my rock. Matthew, my two year-old nephew, has been my angel since finding out I was sick. He is a life saver! He keeps me going!
Do you have other support other than your family?
Actually, I just started going to [monthly women's lunches at APLA] with you girls. I love it!
The first year [after my diagnosis] I kept to myself. I didn't have a problem telling people I was sick, but I didn't feel like I fit in...Like at the clinic, I felt like I was the only white female heterosexual there. It was like, "hey, wait a minute, me and my mom are sitting in a room full of men." It kind of felt very uncomfortable at first. It's sad to say, but I am starting to see more and more women there.
Did that make you feel more comfortable and supported there?
It's sad to know that I am not the only one, that women aren't getting the message that they need to protect themselves. I never said that it would never happen to me. The person who transmitted it to me passed away a year ago...I don't hate him for giving it to me because it took both of us to do this. But it is a hard thing to deal with.
Was it very hard to let go of him?
Very hard. We were friends since we were 15. We were together 15 years as friends and lovers on and off. Yeah, to let him go was hard. It was harder to see him go. I saw him on the last day of his life. In the last few months he was diagnosed as having had a stroke, but it was actually the bacteria eating his brain. He lost movement, he lost all his vocabulary, he was just a lump. I could not stand to see him like that and he was ready. I kept telling him just go, go now please, you are making it worse on both of us. At a time when I was fighting to keep every T-cell I had, and not stress out, it was like "Oh God, please." I feel it's better for him, but it was hard at the end.
What kept you going then?
I have faith. I have faith in God, that God's going to find a way to make this right. I think that God gives you only as much as you can handle. That may sound real hokey and everything, but I think my purpose is this, telling you this to get it out there. I mean, I have always been very vocal and everywhere I go I tell people...
[A neighbor who has two teen-age daughters] asked me, "Will you talk to my daughters for me?" I told the girls, "You have things you want to do in your life, please be cautious, be prepared, and don't believe what guys tell you, like if you don't swallow or if he doesn't come in you, it's okay. Please, always use protection, no matter what." Some girls are like "Wow!" You know, they did not know any better and that makes me feel like maybe I saved one of them -- and if I save just one girl that makes me feel so much better.
You know, I am not just standing up for girls, but guys too. If you are bisexual or gay then you should know what you are up against, and some women are a little bit more naive -- I hate to say it -- and the guys don't tell us everything.
Do you know many other women living with HIV/AIDS?
Just the ones I have met at APLA. You know, all my friends from high school who now know that I am sick, they all say that if anybody was to get it, I could handle it the best. They all said that they would blow their brains out, they would have just kept it in the closet. I am vocal about it and I tell them how I feel. I tell them to tell their children, their friends, and everyone else.
Do you find them supportive?
Very supportive! [During the first three months after my diagnosis], everybody was pampering me. I was, like, look, I'm sick and I have been for five years and didn't know what I had, now that I know what I have and I am on the meds, let's treat me like I am "normal". . . this may be kind of a setback but I can still do things. I can't do everything that I have done in the past, but I've known my limitations for five years. I try to go out and I love to be social and I don't have any problems telling people that I am sick, you know, because maybe that will be what saves them. I've told everybody at the bars and clubs, even bartenders. I'm sick. Watch yourself. Be cautious.
What do people say when you tell them that you are sick?
"Wow! You are? You don't look sick." That's people's first reaction.
Well, I don't look sick now, but a year ago I lost 145 pounds and I had circles under my eyes, I was losing my hair. I started taking vitamins, herbs and now I have started going to the gym. I am trying to get myself back into shape, I want to have a child, I would love to get married.
There is a special person in my life...We are trying to work things out. It's kind of hard because he is dealing with me being positive and that's kind of hard for him. We were engaged before, and he saw what I was going through. Now that things have changed, it will take time for him to adjust.
Would support programs for both of you be useful?
That would be good. It would probably give him more understanding.
I live my life now for the moment. [Sometimes] people say "You should put that off until you are feeling better." Well you know what? I don't know if I am going to feel any better. If we are going to do it, let's do it. I don't want to wait.
What is most supportive for you right now and how could support improve for you in the future?
The monthly women's lunches with the girls at APLA are very helpful. Maybe I would like to try some counseling for my family. I know that my mother does a lot for me, and I know that it puts a damper on the time she spends with the family. I know it strains my mother and father's relationship a lot when she puts me ahead of everybody and I know that's hard on them.
Is it hard to put yourself first?
When I got sick, my doctors told me "you know, you are going to have to put yourself first." And that's something I have never done. I have always been the one to make sure that everyone else is happy first. I'll take the leftovers. Sometimes I try to practice it, putting myself first and I tend to feel like I am the worst bitch ever. I feel like "Oh no, I can't do that, I can't put myself first.". . . If you ask me to do something, I will. I can handle it, even on my bad days.
You show great courage in many ways, but particularly your eagerness to educate through disclosure.
What can somebody say?
. . .When I first got sick, my mom was like "Oh no, people who don't know you are going to think that you're sleazy or a drug user." I said to her, "Mom, if anyone asks, I got it because I had sex, I got it because I loved somebody." People sometimes ask, "If you went back and could do it all over again would you do it?" I wouldn't change a thing. I would have been more careful, if I had been more educated on the subject of HIV and AIDS.
This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.