Today would have been the 44th birthday of my big sister, Ellen…and is also nearing the 12th anniversary of her passing from AIDS-related causes. Ellen is the reason I am so passionate about HIV/AIDS education and have worked in this field for the past 15 years. Ellen was diagnosed back in the early 90s when AZT monotherapy was still a possible treatment option, d4T and ddI were used in combination and protease inhibitors were but a hope on the horizon. When she was diagnosed, she had somewhere around 100 T-Cells and was thought to have been infected for several years already. She was living with my parents in a suburb of Chicago, and when she started seeing a doctor at the local hospital to treat her HIV, we later found out that she was his first HIV patient…and he seemed to be learning as he went along, just as we were (note, there were a lot fewer HIV specialists at that time than there are today, and I highly advocate finding a specialist for HIV care and treatment, as well as educating yourself as much as possible about the disease, its treatment and possible side effects).
After a few months of taking a treatment regimen that is no longer prescribed, she suffered from wasting syndrome and was suddenly a shell of her former self. No one knew what to do and there was confusion, shame and fear that people would find out. Recently graduated from a liberal university where I had honed my activism skills, I advocated that she be open with her status and not feel ashamed…I kept trying to make the argument that we wouldn’t be hiding anything if she had been diagnosed with cancer. I couldn’t get past the concept that there was so much stigma around the fact that she was a single woman who happened to date the wrong guy in the mid/late-80s (when HIV was barely on the radar for most people…especially women). Well, long story short, Ellen was no wallflower, and my gentle nudging was all it took to launch her into her own form of activism which included volunteering at several different HIV/AIDS organizations, as well as becoming involved in clinical trials at Rush-Presbyterian in downtown Chicago. Soon, she had a whole new group of people who realized how special she was and found out how she could light up the room when she walked in.
Ellen was the middle of 3 girls, and true to the sayings about the “middle child”, she could be a handful. When she was happy, there was nothing better in the world and everyone wanted to be around her, but there were a lot of dark times too. At this point, it’s hard not to focus on just the good times…like when she taught me how to read when I was 4, how we used to share a room and play together in the attic of our old house, and some of the fun times we had when we were all grown up…I don’t think I’ve ever laughed harder with anyone else than with her.
So, as I sit here today working on the great programs and initiatives at The Well Project, including the A Girl Like Me blog, I can’t help but wish she were here to share her experiences, her fears, and her sense of humor with you. Just as all the women on A Girl Like Me, she, too, would be an inspiration to so many.
Happy Birthday, Ellen…I miss you and love you, today and always.
Krista Martel is currently the E-Content Manager for The Well Project, where she works to manage The Well Project web portal and the 'A Girl Like Me' blog, among other initiatives. Over the past 15 years, she has been fortunate enough to work with many amazing women whose strength and determination have inspired her in her career including Dawn Averitt Bridge (with whom she worked with for the first time in 1996), Lillian Thiemann, Rebecca Denison, Marina Alvarez, Pamela Neely, Susan Rodriguez, Deneen Robinson, Micki McCaffrey, Pat Nalls and so many others.