Most people dream of retirement...leisurely days, traveling at will and the idea of doing what they want to do, when they want to do it. By age 40, after working for a number of years, those dreams start to turn to something they are eagerly looking forward to, and they start making plans accordingly. But for Nneska Williams, that is still too many years to think about. She just takes it one day at a time.
Williams, 40, does not think of the future. The lupus fighter lives each day as it comes, because she never knows what each day will hold.
"I can only live one day at a time. I cannot plan ahead, because I really don't know what the future holds for me. Once I wake up each morning and I'm fine, I thank God I've made it through to see another day," said the mother of three who was diagnosed with the disease on January 6, 1992.
Williams has been waging a 23-year battle with lupus that flared up when she was 17. The chronic inflammatory disease was triggered after Williams had her first baby. When her baby was eight months old, Williams' mom, Sarahlee Williams found her daughter unconscious on the floor. She went through a battery of tests and was misdiagnosed before she received a lupus diagnosis.
With lupus 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, but 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. With the highly individualized disease, no two cases are exactly alike.
In the two-plus decades that she has been battling lupus, Williams has had five strokes -- the worst in 2000 that left her bedridden for two years and totally dependent. She wasn't able to feed herself, comb her hair or take a bath.
"I could not do anything," she recalled.
Another stroke that affected just her face left her having to wear an eyepatch as she was unable to close her eye.
Her last stroke six months ago left her right leg and hand paralyzed. She has resumed function and mobility in the hand, but today is still unable to feel any sensation in it.
"I can use it to write and hold things, but if I need to feel hot water, I have to use my left hand to do that because the right hand still does not have that feeling in it," she says.
Of the five strokes she has suffered, she said the first and last were almost identical, with her not being able to move. According to her, the first time she was wheelchair-bound. This last time around, in November 2013, after an initial stint in a wheelchair, her independent nature (which she's proud of) reared its head, she chucked the wheelchair and used a cane for mobility. She also wore a brace on her right leg to assist her with walking.
Independent nature
"I'm very determined and have always been independent. I persevere," she said of herself.
Recalling a story that she said speaks to her independent nature, she spoke about stealing her mother's car after her first stroke.
"They told me I may never drive again. I told them that I wasn't going to sit down and wait for someone to take me where I had to go and that I was going to drive myself. No one thought I would be able to do it, but I'm very determined."
Looking back, she said during the early years after her diagnosis she did not let it get in her way.
"I partied. I lived my life and I enjoyed the life that I lived. I didn't think about it. I really, really didn't think about it," she said, even though she said her mother, a nurse, would always warn her about being careful and the serious nature of the disease which sends sufferers through crises. Williams said she just laughed it off.
Even as she spoke with The Nassau Guardian she was suffering through a flare-up, which presented itself on Saturday in the form of a painful rash across her chest, the result of exposure to sunlight. But she was at her job that Monday, as an office manager with a company she's worked for since 1989.
In November she was diagnosed with APS (Antiphospholipid Antibody Syndrome) that causes blood clots in her brain and affects the right side of her body. As a result she's on constant blood thinners and has to have weekly blood tests to ensure that her blood remains thin. She's also developed diabetes, high cholesterol and high blood pressure. She says she knows no one else with lupus with APS. Lupus is a highly individualized disease. No two cases are exactly alike, which means treatments also vary depending on the symptoms and needs of the patient.
"Someone else may be going through chemotherapy, someone else may be going through dialysis because they lost their kidneys, I thank God everyday I don't have to go through that," she said. "I just have my pain, my swelling, my migraine headaches and now I have to be very careful because of the thinning of the blood, and careful because if I fall down and scratch my knee I can actually bleed out. But I smile through it all because I may be going through something, but there's somebody out there going through something that's worse than me, so with that thought I go on."
Williams, an only child, says she thanks God that none of her three children (the eldest is 23, the youngest 16) have presented any lupus symptoms to date, and that they never develop the disease. But she says her children's lives have been affected by lupus.
"From very early on in life they knew exactly what it [lupus] was and how it affected me. A lot of people don't understand what lupus is, but [my children] do and they know how to deal with it."
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.
During the month of awareness, Williams' one wish is that people would educate themselves about the disease, because she does not want anyone to pity her, but to simply understand what she and fellow lupus sufferers are going through.
"I am normal," she said. "I just take a longer time to do things, so you just have to accept me for who I am. If I take 10 minutes to walk from my house to the car and it only takes you two minutes, all you have to do is be patient and wait."
Do not stare
While she admits that she walks funny, she says she hates when people stare at her. And the one thing that hurt her the most, she said, was when her youngest son's schoolmates treated him like he had the plague.
"They really didn't understand what I had. I had to go in and speak with them, and everyone was understanding and kind of apologized," she said of the primary school-aged children. "As a parent I can't hold that against them because a child really does not know." But the mother said she felt for her child.
"I don't like the stares, and people do stare if they see me walking, or they'll come up to me and ask if I had a car accident, and I think that's so rude. If you come in a funny way I get offended."
Williams recently gave a lupus band to a new co-worker who wore it for the entire day, then said he really knew nothing about lupus. She gave him a pamphlet and encouraged him to educate himself.
"I do not like people to pity me. Just accept me for who I am," she said.
Lupus is a disease that is expensive to manage. When Williams was initially diagnosed, she had no insurance. After a three-year remission, she was able to enroll in a group coverage plan. As a result she pays approximately $400 per month out of pocket for medication, almost half of what she would have had to pay without insurance.
Williams is an active member of Lupus 242, a non-profit group that provides support and information for people living with lupus in The Bahamas, and whose goal is to increase awareness. The mission is to reveal the secrets of the chronic disease by finding and sharing information and providing support to people living with lupus, their families and their friends.
"Lupus 242 is not only a group, it's like a family. We go in, we share, we laugh, we talk...it gets our minds off of the pain or what we're dealing with. When we go there, we lay back, we relax, we have a good time. I can pick up the phone and call someone and say I'm going through this, have you ever experienced this, and they'll be like, 'no, but let me call somebody else and ask them'. The group is very close," said Williams.
While Williams has made no plans for next year, the next five years, or even for life after the retirement age, she said as long as she has life she wants people to accept her for who she is and to give her a chance.
LUPUS 242 AWARENESS EVENT
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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