POSITIVELY AWARE JANUARY/FEBRUARY 2011
Bones of contention
By Barbara Marcotte
All these years, HIV was just part of me and it became a smaller part with each passing year. Most days I did not even think about it. I loved, I lost, and I grew into a successful, responsible adult and a leader in the HIV community.
I have been really lucky to have so many great friends and a supportive family to go along with my normal life living with HIV.
My parents were proud, my brother was proud, my family was
proud of who I had become. It’s been a pretty simple life that,
over the past few years, has been peaceful, calm, and
surrounded by true love.
Life goes along with its continued momentum. I always
thought I lost a bit more in life than others, a husband
—my soul mate—when he was just 37 and I was just 27, so
many friends, then my Dad and my Mom. But then, because
loss is really just a part of life, I really thought that I was left
with plenty of time to do all the things I wanted to do. After
all, I am the Princess Warrior.
Then one day it happened…the doctor called—the doctor
who I only saw every 3-4 months, because my numbers had
been great for many years. I went in to see her that week. She opened the door
and looked at me with sad eyes I had not seen before in what I thought was an emotionless career doctor. Younger than me, I
was sure she had not seen the devastation that I had seen
with this disease. But her words were filled with sorrow. Her statement was, “This is not good…this is not good…”
Like an echo in my mind, my world filled up again with all that
sorrow. Sorrow of loss, pain, fear, and dreams not yet achieved.
This echo had not been heard for many years. I remember as a
young widow who had just watched her husband die, sitting on
a sunny porch with my father’s strong hand on my back,
comforting me through my cries of loss for a too-young
husband and all the dreams I had of a life with him. All that came slamming back into my reality.
What about all those things I still want to do? I have so many things…
So many warriors passed this year. They were with us, fighting, living, and loving. Then they were gone.
Ann, my South Side warrior. She was the Queen Bee of warriors. She mentored me in ways I am sure she did not know. And then, Earl. If Ann was Queen Bee then Earl was Dolomite for sure! We never expected Earl, a community fixture, to leave us so suddenly. He was there to piss us off and wake us up whenever we just weren’t listening. Those kind eyes and his smile always made me realize that I couldn’t be aggravated with him for too long because he really was fighting for what we all wanted and needed. Jerome, I think of you as that quiet warrior, that silent listener, there for anyone who needed you. And Laird, the warrior who was never afraid to step up. Even before others were out in public and fighting, you were there. Where would we be without you? You fought on the front lines for us. You made things happen when no one else could.
Then most recently we lost Don, aka Angel Eyes. He was the first person I met when I moved from Chicago. He really was our guardian angel. He became a voice for those living in poverty, rural areas, and those who couldn’t be a voice for themselves because of stigma, shame, or guilt. It didn’t matter who you were, he spoke up for all of us.
So the news that was “not good” made me wonder if I am the next warrior to lose this battle. Could it happen to me? Can I control this monster? My young doctor and I sat down and figured out a strategic war plan. We worked together and when we finished she hugged me and, I think, maybe cried with me. Wow…I can only imagine how rare it is for her to see someone like me. Someone who had been living a long time and in such control of her health, life, blah, blah, blah.
The truth is that we all have to take this seriously. I didn’t fail because I wasn’t “adherent.” I failed because I simply have had HIV for a long time. Options are limited. And we have to remember that everyone’s body is different with this virus. We cannot become complacent for ourselves or our communities. We can’t think that HIV is over or that if I get it, then I just have to take some pills and no big deal.
The truth is that there is not a cure yet. We hope, but it isn’t here yet and we don’t know exactly what it will look like when it gets here. Until then, we have to remember that this war is not over. So we must continue and perhaps now fight harder than we ever have. Yes, I have to fight harder than I ever have. To live and to finish the things that I need to do.
at this self-care thing than your
average person. We must do
whatever is necessary to survive.
Complacency is not a blame issue. For many of us living with HIV, it has become a small part of who we are and what we do in our daily lives. The truth is that most of America could take better care of themselves—what we eat, the amount of exercise we get, resting, reducing stress, alcohol and or drug intake, etc. But then, those of us living with HIV need to be really aware of these issues. Most of my life with HIV has been focused on really, really good self-care. But there have been times when life situations and stress led me to unhealthy thoughts or behaviors.
HIV can be the blame and shame game. As a woman living with HIV for most of my adult life, I already had those pictures of what my body, my hair, my face was “supposed” to look like. HIV brought me to thinking even less of myself at times. When we don’t care about ourselves, we don’t take the best care of ourselves. Situations in life led me to be really down on who I am; HIV made me feel that I did not always deserve the best, that I had to settle. All of this helped contribute to me staying in an abusive relationship too long, not caring about my body, and not focusing on my health.
I am 43 years old now. It is time to change these thoughts and behaviors. Truth is, I know I am a sexy, strong woman—a true DIVA living with HIV. I know deep down, that fight is still there. It has been buried under a lot of shit for years, but I am there. The real me.
We have to get through these things that society, stigma, and discrimination have put on us. Living with HIV is living with a disease, not a judgment of who we are or what we have done. It’s a disease that we acquired because we are humans with normal human behaviors. We have sex; we have other diseases like alcoholism or drug addictions that may have brought HIV into our lives.
Be proud of who you are, be it gay, straight, bi, or whatever. Media and society paint a picture of what is “normal” looking or being. But the truth is that we are all who we are. I have listened to what I was supposed to look like, be like, for too long. In order to really live well with HIV, we must each address the underlying “root” causes of our HIV. HIV is not the problem, but rather the symptom. The symptom of bigger issues that each of us, our communities, and our world has. We must all decide to dig deep and start this fight. Are you a warrior?
Warrior: One who is engaged in or experienced in battle; one who is engaged aggressively or energetically in an activity, cause, or conflict.
In my mind, I believe we have to work harder at this self-care thing than your average person. We must do whatever is necessary to survive. If it means going to see a mental health specialist for stress, depression, anger, or other life situations, then do it. If it means stopping or reducing drug or alcohol use, then do it or get help to do it. If it means learning how to eat right or exercise, then ask your doctor to help. We must survive. Survive to tell your story, survive to watch your children grow up, survive to achieve your dreams, survive to grow old.
So my fight began with five new medications…a combo not sure to work, but it was the best we could come up with. I took a short-term leave from work for the first time ever, even after an AIDS diagnosis more than 15 years ago. The first week was okay; I went into this with lots of CD4 cells and feeling pretty good. The second week I started to see some shortness of breath, then the bumps (injection site reactions) started, then the rash, swollen, hot, and sooo itchy. Can I really do this? Could I even possibly go back to work like this? Low energy, tired, tired. Old—that is what I felt when I looked down at the large pill box, my lack of energy, and my shortness of breath. I must do this. I won’t give up. Too much to lose, too much to do still.
So I am fighting with all the passion inside of my soul. The passion for helping others, for loving, for laughter. I go into this fight with the people who love me, the community I am committed to, and the life not yet lived that I dream for. My fight is not over. Imagine what our world could be if we all found our fights?
Now is the time to realize that we all have this fight inside us; do we decide to fight or just let that dark monster come and steal us away from all of this? Do we have that choice? Can we stop it? I am not giving up.
Are you a warrior? I am. I am the Princess Warrior. Forever.
Barbara Marcotte is an HIV educator and a member of the steering committee for the U.S. Positive Women’s Network.