Held in conjunction with national sponsor Macy’s, the event promised a star-studded catwalk. Celebs would include Gina Torres, Kat Graham, Alicia Quarles, and Anika Noni Rose. Anika asked me to tune in if I could. I did, so I did.
The fashion show, streamed online, began fashionably late. The women sported gorgeous designer gowns, some of them strutting, dancing, and bouncing down the runway.
Although the online stream played some strange techno mix, I later discovered the live audience was treated to upbeat songs. Anika shimmied and sashayed to Dreamgirls hit One Night Only. I’ll admit bias, but she was my favorite with Bella Thorne not too far behind.
As some of the women appeared on the catwalk, messages projected behind them. The sayings included their names, their featured designer, and why they walk. I walk to empower women, for instance. Later on in the evening, Anika shared why she walks:
The official cause of death was a brain hemorrhage, which was an unfortunate complication of her heart attack. Although she’d been slowly working to reclaim her fitness, lower her cholesterol and free herself of nicotine, time wasn’t on her side. She died a few months before her 60th birthday.
I wrote a piece for the Body Narratives, a project founded and curated by Hana Riaz. The project creates space for women of color to reclaim and share their experiences. It’s a beautiful platform, and I’m honored to have a piece included in this body of work.
Here’s Hana’s introduction:
Our bodies are often physically and emotionally tied, and yet the disconnect experienced, the gap between the two can often seem overwhelming, painful, difficult. In this moving and deeply honest piece, nicole d. collier talks about living with fibroids and the body as a site of trauma.
In Part 1 of this brief series, Marla shared the long road from obscure symptoms, to crisis, hospitalization, and diagnosis. In this installment, she discusses the ways her life has changed as a result and how she is supported on her journey.
My life has changed quite a bit. I now take medication every day, which I hate. Some medication I may have to be on for the rest of my life as a maintenance kind of thing. Because lupus has no cure, all you can do is treat it and manage it. Boooo!!!
I was in denial at first about my diagnosis, but not because I couldn’t accept it. Everything I would read would list these typical symptoms that I didn’t have. It wasn’t until November of 2012 that it all became real.
Out of nowhere, these itchy skin rashes popped up all over my legs and arms. I had a constant reminder every day that I had lupus and I still have these rashes. They have left hyperpigmentation that has yet to fade.
I now have a sensitivity to the sun, and this is a common symptom. So, I have to avoid the sun as much as possible. This summer, no shorts for me . I have to wear sunscreen every day (yes, black people need to wear it too). This has been extremely hard to deal with because I love the sun and now I’m afraid of it. So now, in addition to the rheumatologist, I also see a dermatologist. (Really tired of all the “ologists”). I’ve lost a little hair. I am also experiencing more than usual fatigue, which is also a common symptom.
Most recently, and I say this with a whisper, I’ve noticed a significant decrease in my libido. I don’t know why, but I’m thinking it’s a combination of the medication as well as the psychological trauma and stress of this journey. I haven’t spoken with my doctor about this yet, but I plan to. I mean, I’m only 38.
The hardest thing I’ve had to deal with is the not knowing what could happen to my body next. I didn’t know these rashes would appear, they just did. Will I have the joint pain that is characteristic with lupus? As a former professional dancer and I’m being candid here, I think that would devastate me. I know that I would prevail, but that would be really hard.
Family and friends have been amazing. In addition to educating myself, I have had to educate them. They can be of more help if they know some of what is going on. Some of my friends have referred me to friends they know who have lupus. Talking with them has been a tremendous help.
I have felt alone with this disease and still do sometimes. Lupus manifests itself differently in each person. For me, right now, it is affecting my skin. So being able to relate to someone else has been instrumental in the processing of this journey.
Friends and family members have also turned me on to alternative methods of healing. I’ve incorporated acupuncture, adopted a gluten-free diet, and tried to reduce the stress (a major cause of having a flare-up). Therapy – I know that we aren’t supposed to talk about that, but therapy helps. Having someone not emotionally connected to you provides a different type of support. I have also entertained the idea of joining a lupus support group.
What do you want people to know or understand about lupus?
I would like people to know that lupus is a quiet disease, kind of a mystery disease. Most times, no one would know you are living with it. The symptoms aren’t in your face. For me, I can cover my arms and legs, so no one would know I have these rashes. We have all said we are tired, we say it all the time. But for someone with lupus, the fatigue can be extreme. Those who don’t have it or understand it may not take someone saying they are tired as seriously as they should. It’s not laziness, it’s fatigue.
There is a quote by Maya Angelou that I love:
You are not your lupus, and life continues. You just might have to make some adjustments. There are going to be bad times, but also good times. It’s the looking forward to the good times that help you through the bad times.
I have learned a lot about myself during this journey. I learned how strong I am and how far I can be pushed and still succeed. But at the same time, I learned that I didn’t have to be so strong, trying to get through this alone. I learned how to ask for help. And, I learned how to truly love myself.