Salina Coleman: “I Have Lupus, but it Does Not Have Me”

As told to Bernice Elizabeth Green

Producer Ava Duvernay has it.
Singer Selina Gomez has it.
Entertainer Nick Cannon has it.
But there is one remarkable difference in the case of Brooklyn’s Salina Coleman who also has Lupus, she is taking every muscle, much of her funds, and a heavy dose of compassion to inform her community about the disease which attacks the immune system.

And although Ms. Coleman’s compelling medical journey comes during the national observance of May as Lupus Month, she would enjoy a profile in Our Time Press, still, for her remarkable leadership in delivering wellness and healthcare messages to those who need it most in her community.
Last week, Ms. Coleman shared topline notes on Lupus: what it is and how it is increasing in populations of color, particularly Black women, the segment in which it is most severe. This week, she talks about herself.
Last week, you informed our readers about the impact of Lupus, an autoimmune condition that attacks normal, healthy tissue in many parts of the body causing inflammation for which there is no cure? Can you share some of the medical challenges, including symptoms you have experienced?
I am considered a critical case because I am experiencing every form of Lupus. The case is so significant because to my knowledge there’s never been a case like mine where the patient is still living.

The list goes on and on. I’ve gone through dialysis, chemotherapy, plasma freeze, loss of my right lower leg, loss of the use of seven fingers, constant sleeplessness, and inflammation in many parts of the body. All basic symptoms are ascribed to all forms of Lupus I’ve experienced. Pain, shortness of breath, Lupus Fog.
All parts of my body have been under attack: joints, lungs, kidneys, skin, spine, and more.
I have anemia and contracted thyroid, and digestive problems, including gout and Gerd. Heart disease, high blood pressure levels.

Yet, you find the time and energy to inform others through events and health workshops, plan, design, promote, do all of the work, and even gather and pack gift bags?
After discovering the extent of my condition, I incorporated health workshops into my work at various centers, Metropolitan, Lakeside, and here at the Tompkins Park Center. It is natural for me because basically, I have been doing this for most of my life, starting as early as age 16-17. Organizing events, games and doing something special with people. I’ve formed Christmas caroling groups, Easter basket giveaways, and organized fashion shows. Also, organized, all varieties of health care workshops: breast cancer, heart disease, breathing, slips, and falls,

Last week, on May 10 Lupus Awareness Day you hosted an initiative for the seniors here at Tompkins Park.
In 2019, a Men’s Health Initiative was launched, and we may do it again next month. There was also a successful Woman to Woman conference, launched last year, which is coming back. We discussed topics related to women’s health concerns, lifestyles, and stress relief. I hosted a breast cancer workshop, a workshop on diabetes and so many more. On average, about 12 to 15 a year for about 12 to 15 years.

As I mentioned, my interest in sharing information came very early, around the time I had Lupus, but it was not pronounced and I did not know what it was. As a teenager, I worked with children in the Junior Knicks League at the YMCA across the street from where we lived on Humboldt.
The directors observed how I worked with kids and hired me. I was a student at Eastern District High School at the time. I was charged with 100 kids all by myself and I would make up fun group sports games to hold their interest. We did drills, danced, and cheerleading. I was a cheerleader and I taught them all that I knew. Of course, we made sure they did their homework first. I was attending school at the same time I worked in this evening after-school program.

Your niece Kaliyah told us you are a whiz at not only playing but creating your own games for young people and seniors.
I created a Celebrity Lupus game, and a New Year’s Bingo game. There’s also Hot Cocoa Conversation where we have conversations exploring history over hot chocolate.
Just like a good game, every workshop is a learning experience. Seniors learn something from each workshop and they, then, take something they’ve learned and share it with someone they know.”

What else can you share about your journey?
It’s been a rough road. There was a time I had no real income, and I paid out of pocket for expensive medications like Prednisone.
In 2004, nearly 20 years ago, there was one medication that cost about $800. I was backed up on rent and bills. I just kept going although it was not easy. Trying to deal with personal issues was an uphill battle: I lost my Faith. I asked: ‘why is God punishing me if He loves me?’ I knew that we all endure hardships in our lives, but I thought I was abandoned. Then my church family stepped in to help me. I found the strength through a deeper relationship with Him to make it through the storm. That is what gave me hope to live, and that is where Faith comes in. I think it may be difficult for those who do not have a relationship with God to understand what I mean. I give them my favorite scripture for reference: All things through Christ who strengthens me. Philippians 4, 3-10.

With regards to my limbs: on my left hand, I lost three fingertips; four, on the right, but I still do crafts, for showers and weddings. I write. Although I can’t pick up certain things off the floor, I like to try to challenge myself to do it. Sometimes the skin peels on my fingers. The feeling is like a thousand papercuts. In wintertime, I hibernate. Sometimes, I wear gloves inside my home. Summertime, too, can be difficult. Extreme cold and extreme heat are unbearable.

Who are some others who have helped you along the way in addition to family members, the church, and niece Kaliyah (from whom readers will learn more, next week in OTP)?
My rheumatologist of 27 years, Dr. Mona Pervil-Ulysses, and my mother.
I would not be here if it were not for them. They were the platform to help me get good health. I was on life’s deathbed several times. But God sent a woman from rheumatology school to help my case, a critical one.
Before meeting Dr. Pervil, I did not know what was going on with me. I was getting blood transfusions, anemia was so low, my iron was almost nonexistent. My whole immune system was tearing down, and rheumatoid arthritis, affecting the lining of my joints and painful swelling, was out of control.
I was being given different antibiotics, and all that medication was poisoning my system. No one knew what I had so they did not know how to treat it. When it seemed like I was about to die, Interfaith called in my whole family. I didn’t feel anything, didn’t know what was being done. But people started praying, and my mom told my family, “My daughter’s not going anywhere!”

She called the police, signed a waiver, and had an ambulance take me to Downstate. As soon as I got to the emergency door, they knew they had a critical case. I was lifeless. My mom had gotten me out in the nick of time. God was with me the whole way. They were praying in Intensive care. Even the nurses were praying. There were eight or nine machines around me, and there were calls for pressure, bags of medication, and big sacks of blood.
I was in and out of conscience until I saw… and I heard them yelling … yellow code. Then I blacked out. I wasn’t awake when I went to OR. I lay in a comatose state from that night on for several months.
I met Dr. Pervil when they gave her my case. God blessed her to save my lie. She told me what it was and told me she had never seen a case like mine.
She went beyond the call of duty. She made sure I was getting proper medications.
When I opened my eyes, the nurses clapped and laughed. I lifted my head up to look out the window at the sky.

When did it finally hit you that Lupus would be with you forever?
When they said there was no cure for it, no medicines to keep it under control. I take 20 pills per day.

Anything you miss doing?
I love winter. Snowball fights. I would dress and lay in the snow. I can’t go out into the snow now. After five minutes, I get frostbite. Sometimes I go to the lobby and look out the big windows at the snow. The best for me is fall. I do autumn.

But what’s the most important thing to you now?
Knowledge is the most important thing of all. If I didn’t get educated about the disease I would not know about it or the medications to take, the blood clots, the procedures…I would be lost.
The first key is to learn, and then learn how to cope …

How has your outlook on life changed since you were a point guard in high school looking forward to a career in basketball with the WNBA?
I give myself birthday parties every Dec. 4. I look forward to them.
In 2022, it was a dinner party for 20 people. I do it to celebrate my life.
The theme that I created centered around The Queen Within. I looked at the history of different Black queens of the past, Nefertiti, Amina, and others. I created a game called “Queendom.” I always try to give a little education, and a little knowledge to my guests so they can take with them something to remember.
I’ve been from the hospital to rehabilitation nearly every year for many years. Every holiday. Every birthday. For years.
Every day you are alive is a chance to celebrate your life.
After all I’ve been through, heck yeah! (To be continued)