Fifth grader Jillian longs to wear bright colors in a school of neutral tones. To run and flip upside down while everyone else whispers and gossips. But no matter how hard she tries to be herself, shyness keeps her true brilliance hidden away. Even if it means getting the wrong glasses or losing an easy contest, Jillian keeps her mouth shut.
After a bully tells her she can never be a winner, Jillian gets fed up. She determines to prove, not only that she’s smart, but brave, too. Her goal? Win the Mind Bender, the school’s biggest battle of wits.
But breaking out of her shell is easier said than done. Jillian has less than a month to overcome a lifetime of shyness and summon the courage to fight for herself—or lose her only chance to win.
This contemporary, middle grade #ownvoices story features a Black main character, and representation of chronic illness (Mama has lupus).
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.
Marla at a party in 2010
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.
Marla (who made her own costume) as Puss in Boots in 2011
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.
Late last month, I checked email to find this subject line topping my inbox. I’ve known Marla, a slim, vibrant beauty from Chicago, since college. She’s always been stylish in her size zero clothes, a graceful stride in striking heels or casual kicks. Perhaps it’s the dancer in her, she’s regal, shoulders back, long neck, even when frowning about some injustice. Whether in locks or a full ‘fro, her hairdo compliments her warm countenance.
Marla (left) & me at Dina’s wedding, 2011.
From the mid-90s until two years ago when we saw each other at a soror’s wedding, this was my enduring image of her. In 2011, she hadn’t changed a bit. And even though her life is dramatically different now in 2013, much about her is still the same.
At 38 she is still warm, she is still vibrant, and now she is living with lupus.
Marla agreed to share a bit about her story, as there are still many people who know little to nothing about lupus. Rather than summarize or paraphrase, I’m using Marla’s own words here (quoted and in red). It’s her story, after all. I want her to tell it.
I began by asking her to define lupus:
Our immune system is supposed to create antibodies that protect our bodies from viruses, bacteria, germs, etc. Lupus is an autoimmune disease. This means that my immune system can’t tell the difference between the bad stuff and the good stuff. So it creates antibodies that also attack and destroy healthy tissue. Lupus can affect the skin, joints and damage major organs (kidneys, heart, lungs) by causing inflammation and pain.
It’s somewhat simple to describe what lupus is, but discovering you actually have it is another matter entirely. In 2012, I remembered receiving a text from Tavares, a mutual friend of ours. Marla had been in the hospital for days by then, but no one could say why. I ventured a phone call to see if she was up for a quick hello. Her voice was weak – practically a whisper. It was disconcerting to hear her that way. Ages passed before doctors put the pieces together and made the diagnosis. Marla describes this period as the scariest time of her life:
It was early January 2012, I got sick with what I thought was the stomach flu. I was having really bad stomach pains, fever, fatigue. This lasted for about four days with no reprieve. After the fourth day, I started to have chest pains and difficulty breathing. It was at that time that I decided to go to the ER.
I was seriously dehydrated because I hadn’t eaten anything during those four days. My blood pressure was really low and my heart rate was really high. They ended up giving my about 19 liters of fluid and I gained 20 pounds from that alone. I was first in the ICU (Intensive Care Unit) for about two days. They found out nothing was wrong with my heart, so I was sent to the regular area. Over the next 11 days, I was tested for everything under the sun. I had biopsies on my skin and lymph nodes. I had innumerable CT scans and x-rays. I had a colonoscopy. They could not figure out what was wrong.
Looking back, I can see that things were happening that I didn’t see as symptoms, but just as health issues. I would get my regular physical every year. Maybe starting in mid 2009, my blood test started to show that my white blood cell count was low. After retesting a couple of times and getting the same results, in mid to late 2010, my doctor referred me to a hematologist. More blood tests.
One of the tests is called an ANA test. It isn’t a definitive test for lupus – there isn’t one – but it can show that someone can be predisposed to it. I tested positive. I retested and it came back positive.
At this time, my doctor referred me to see a rheumatologist. Because I wasn’t having any symptoms of lupus, I would see her every 3 months just for testing (throughout 2011). White blood cell count was always low and I would always test positive on the ANA test. They wanted to start me on medication, but I was like, why would I do that, I’m not having any symptoms? Also, in 2010 I started having these pains on both sides of my body right under arms, and after seeing my doctor and not knowing what was going on, she referred me to a pulmonologist (lung doctor).
He thought it could have been caused by leftover scar tissue from pneumonia (hadn’t had it). We did a biopsy on my lung and nothing was conclusive. These pains remained off and on through most of 2011. So, I guess there were signs but I just didn’t know it. While I was in the hospital in 2012, I made all of this aware to my doctors. And after them finding nothing else, my final diagnosis was lupus.
Marla shared more of her story, including how her life has changed since her diagnosis, some of her favorite resources, and encouragement for others living with lupus. Read the second installment here. Marla’s walk is October 19. Please click here to find out more.
