For more than three decades, Shirl Gaskins has been battling a brutal disease - but to look at her on most days you wouldn't know it. As far as this 50-year-old beauty is concerned, lupus may be on the inside of her, but she won't let it show on the outside.
"Shirl understands whatever her challenge is of the day, and Shirl camouflages that challenge and focuses on the good that is going on with her to take away from whatever the challenge is of the day. Shirl will always be dressed to the nines. Shirl will always have her makeup on. Shirl's hair will be done. Shirl's nails will be done. Shirl's toes will be done, and Shirl will always be matching. I am not allowing lupus to have the best of me," said Gaskins, who described the autoimmune deficiency disease as "awful" and a "brute".
Lupus is a chronic inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. It can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus is the facial rash that resembles the wings of a butterfly unfolding across both cheeks. Some people are born with a tendency toward developing lupus, which could be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms. It's important to remember that no two cases are exactly alike.
Gaskins was 17 years old when her symptoms first presented after having pizza with friends. She was treated for food poisoning after bouts of vomiting (to the point where she was bringing up bile) and diarrhea. Weeks after treatment was administered for food poisoning, her gastroenteritis symptoms continued for another eight months. Her parents, who were in Atlanta, met a rheumatologist who was starting a lupus research trial. The specialist told her parents to enroll Gaskin as a subject. At age 18, she was officially diagnosed with lupus.
She's battled the disease all of her adult life and has had many ups and downs, including the collapse of her central nervous system in 2000. That episode meant she could not do anything for herself and was dependent on her husband, Dr. Clive Gaskins, to provide detailed care for her. The collapse required her to have to learn to walk again. Under significant stress, Gaskins suffered the onset of Raynaud's disease, requiring her to wear woolen gloves for six months. For the next year, she suffered Temporomandibular disorders (TMD), mouth ulcers and broken bones - including a fractured ankle.
Adapting to her circumstances
"Lupus sends you through these crises. You learn to adapt and you become adaptable to whatever lupus throws at you. My motto is, whatever it throws at me, I'm going to rock. I'm going to make it look good," said Gaskins. "So when I had pleurisy back in 2011 and some other challenges, I lost my hair, tripled the amount of weight that I normally have [she went from a size six to a size 16 because of the amount of steroids she took for treatment] overnight. But my position is, I'm going to rock it. I'm going to make it look good."
While others may have been told not to risk having children, when Gaskins decided she wanted a child, she endured all the necessary medical tests and took precautions to ensure that she would not have a problem with a pregnancy and that lupus would not affect her baby. It took her five years to do it all, but she had a child who is now 23. Her daughter, Aliyah, does not have lupus, but she has lived it, said Gaskins.
"My daughter has lived lupus through her mother having the autoimmune deficiency. She's watched me every time I've gone through a crisis, but I did not realize how observant she was or how much attention she was paying to me until one day she came home from school. She was about 13 and she said, 'Mommy you're not feeling well are you?' And I was like, 'what do you mean?' Because I was pretending to be fine. She was like, 'You're eating junk food. You never eat junk food. You only eat junk food when you're not well.' I did not realize I would eat junk food when I was sick and that she was paying that much attention -- she was a teenager. And even now that she's away and I have a broken toe and a few other issues she calls to ask if I'm staying off my foot. Even though she's not here, she's still in tune with me and what's going on," said Gaskins.
The month of May is recognized around the world as Lupus Awareness Month, and Nassau-based support group Lupus 242 is leading the way in the education about the debilitating disease that affects an estimated 5.5 million people globally. There are no real statistics on the number of people in The Bahamas with lupus. Lupus 242 to date has 50 active members.
"It's a comforting feeling to know that there are others out there who understand what I'm going through, who appreciate when I say I'm not feeling well today but I'm not going to let it get the best of me, that I'm going to just soldier on and do what I have to do, or don't mess with me, I'm not in a good mood. This is no-fly zone today; don't bother me. I've gone under for a few days," said Gaskins of the Lupus 242 group. "They understand that. Even my friends understand that because they've gone through everything with me as well. All of the friends that I have I've had over 30 years, so they understand when I say I've gone under and realize that there's nothing they've done, it's just that I need my space."
Education is key
Gaskins' wish is for more people to read up on the disease so that they can have an understanding of it and what it means to be a lupus patient and the fact that no two sufferers are alike.
"Do not assume anything about this disease. Each individual is different. Do not compare one patient with another. It is extremely unfair to do that to a lupus patient or any person with an autoimmune deficiency disease."
She also wants people to realize how hurtful negative comments can be, especially in reference to weight, their skin or the loss of their hair.
"One Saturday morning, someone I'd known for a really long time who I thought understood my challenges, the first thing that came out of her mouth was 'girl, how you get so fat'? You're telling a woman who is accustomed to being a size six her entire life how she get so fat, knowing her challenges. To me that is the cardinal sin. Or they say to you, 'But you don't look sick.' We don't want to look sick. We don't want anybody's pity. We want empathy and understanding and an encouraging word. A kind word towards a lupus patient I think is the best medicine ever."
As for Gaskins herself, most of her top embarrassing moments are all personal encounters with people who are supposed to know her not recognizing her due to distortion from the disease.
Topping the list of her five most embarrassing moments, she said was having to travel alone at age 18 to Atlanta every other month to go to a strange hospital and to be probed and prodded by doctors and interns for two weeks. She recalls enduring embarrassing tests when she was not accustomed to them, and having onlookers present during the tests.
The number of times Gaskins has gone unrecognized by people she's known for years is difficult to count.
There was the occasion when a girl she had gone to high school with and spoken to in person on a daily basis did not recognize her and asked her if she was Shirl's sister. At that time, Gaskins said she was on lots of steroids.
Recently, she visited someone who had known her for years and the acquaintance failed to recognize her because she looked so different. Gaskins said that hurt. Then there was the little boy who has seen her over and over again; on Sunday he told her he didn't recognize her.
Speaking of each incident, Gaskins' voice gave away her pain.
"The most embarrassing situations are personal -- the way people say to you, 'well why you look like that'? And I say I'm sick - did you not get the memo? The distortion of the body and the distortion of the face - to me - is the cruel part of lupus," she said.
Today, because of what her body has endured, Gaskins has five sizes of clothes in her closet, ranging from size eight to size 16. She said she had to "give up the ghost" recently and gave away all of her size six clothes.
The cost
Dealing with her illness isn't cheap either. Without insurance, Gaskins' monthly medical bills are astronomical. Her medications can cost up to $1,500. She also has to visit a nutritionist monthly at a cost of $500 and a rheumatologist every three months in Florida at a cost of approximately $500 a visit. The medication prescribed from those visits can cost up to $1,500.
Gaskins also does Pilates and yoga to alleviate her suffering, at the cost of an additional $500 per month. She has lupus myositis, and her muscles have to be stretched and lubricated daily, which is where the exercise comes in. Living with fibromyalgia as well, Gaskins endures constant pain and feels the need to exercise constantly.
"Everything that I have means constant exercising. My central nervous system needs to be lubricated and moved every single day. My neuropathy needs to be exercised every day. Everything I have needs exercising," said Gaskins.
And then there's her diet. Due to a number of food allergies, she has to consume a special diet. "I have allergies to foods that people would be like 'What!' -- pumpkin, mango, strawberries, blueberries, asparagus, broccoli -- things that we take for granted. That's why I say anyone who has only heard of lupus needs to read for themselves because you never get the true picture, and the true picture is no two people are alike. And you would probably never find another lupus patient with the same nonsense I'm going through."
In spite of lupus, Gaskins says whoever Shirl was when she was 10 years old is the same Shirl she is at almost 51-- one who intends to live her life.
"I'm a butterfly by nature, so I'm always doing something crazy."
Depending on who you speak to this may not be crazy at all, but at 50, Gaskins still wears her bikini and doesn't care if she's a size two or 22. She says it's her body -- she loves it, embraces it and will flaunt it. She's also competed in four half-marathons, swims three miles three to four times per week, and walks 10 to 12 miles, three to four times per week
She still remembers her beautiful head of hair that she had back in the day. Though it may not be as long, her hair still retains its beauty, though it's now cropped low and dyed platinum blonde. After a steroid treatment, her hair started falling out. She told her hairdresser to cut it all off. When she was able to drive again, they bleached it. She's been rocking her platinum blonde 'do since 2011.
Even though she was diagnosed at an early age, Gaskins managed to hold a job over the years. When she was first diagnosed, she worked with the government and had a permanent secretary who worked with her, even though she was off the job for almost two years. She also worked in a law firm and an offshore bank, places she said that were all accommodating to her, but with the stress level that came with the work environment, her doctor told her she could either work or die. She stayed home for a year in her early 30s with her then four-year-old daughter before landing a part-time job (9a.m. to 1 p.m.) that helped her regain her independence. She worked with that company for 10 years before it went under, but she is grateful for that period because it was what she needed to bolster her confidence.
Today, with many ailments, Gaskins says she is unemployable. To see her, again, you wouldn't know it - she's well dressed with a smile on her face.
And to families who have someone fighting the awful disease, she encourages them to love their relatives.
"Wherever we are that day...whomever we are that day...just love us -- because we don't mean or want to be anything other than the loving, caring person that God has always wanted us to be," she said.
LUPUS 242 AWARENESS MONTH CALENDER OF EVENTS
May 9 -- POP (Put On Purple) For lupus, corporate Bahamas and schools
May 10 -- World Lupus Day (Put on Purple for lupus)
May 18 --Purple Hat Tea Party at St. Matthew's Anglican Parish Hall. Tickets are $25 adults and $15 kids. Telephone 525-9967 for more information.

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