By Patricia Wilson-Smith
This week, I lost a sister and a friend.
On Tuesday, my sister-in-law, Vickie White, died of an extremely rare disease called “Scleroderma”. Vickie was 43 years young. She was a mother of five children (three step-children, and two by birth) and my brother’s wife. The video below, which I call “If Love Were a Kiss”, is my tribute to her life and spirit:
Vickie was loud, and vibrant, and talkative; she was strong, and truly one of the most loving, giving people I’ve ever met. She was not perfect – early in her and my brother’s relationship, we argued a lot, mainly because she was very insecure about a lot of things. But despite our ups and downs, I quickly grew to know her as the generous, loving woman that she really was.
She was an amazing mother. She could always be counted on to take in a gang of kids for the weekend, mine included, just because. She and I planned dinners together, and cooked together, and bragged about our kitchen skills together for years. And we laughed – we laughed about current events, celebrities, family members, and ourselves. She was a comfortable fixture in my life that I just can’t imagine being without.
I realize now that it’s very easy to take someone like Vickie for granted; she was combative and confrontational at times, and a gossip. She was sometimes unhappy with her life, and often blamed the people in it. She made it very easy to want to avoid her occassionally, especially if like me, you were busy or just didn’t feel like hearing about her latest drama. Yes – it was very easy to take her for granted, even though I know that had it not been for her, I would have missed out on some of the greatest laughs of my life, and most definitely some of the greatest meals of my life. Vickie made potato salad that made you want to take a bath in it, put it on bread, in soups, spread it on crackers. And for all of the 16 years that she was a part of my life, I was definitely guilty of taking her special brand of love for granted, because I thought it would always be there. Losing her is devastating – for me and my entire family.
She talked me through troubles in my marriage, through my subsequent divorce, and through almost every relationship-gone-bad I’ve had since. When I decided to get my Master’s degree and needed every waking moment on the weekends to study because I was working full-time, she frequently picked up my son, entertained him, took him on outings with my niece, and never once asked for a thing. I loved Vickie very much.
Most people have never heard of the disease that took my sister-in-law. Scleroderma is an extremely rare, chronic disease characterized by excessive deposits of collagen in the skin or other organs. The localized type of the disease, while disabling, tends not to be fatal. The generalized form of the disease, however, can be fatal as a result of heart, kidney, lung or intestinal damage. According to online sources, women are more likely to contract the disease, and there is evidence that black women are at a significantly greater risk than all other women of developing it. In addition, the fatal form of Scleroderma appears to occur more frequently among black women and starts at an earlier age.
Vickie was diagnosed in late Summer last year. I remember the phone call like it was yesterday, because it stopped me cold in my tracks. Amazingly, another very good friend of mine had died from Scleroderma several years earlier, and because I also worked with this person back then, my co-workers and I were forced to watch as her health failed, helpless to do anything to ease the debilitating affects of the disease. It was no different with my sister-in-law.
It was heart-breaking to see how she suffered, because I owe so much to Vickie. A few years back, when I had major surgery, she was one of the few people who came to the hospital to make sure I was alright. She was there one night in particular after the surgery, when for some unknown reason I had a sudden and stark drop in blood pressure. I remember her standing over me as I threatened to slip out of consciousness; I remember her running from the room to summon a nurse, and standing over me, rubbing my hair as the medical staff worked to stabilize me again. Once I was home, she and she alone made her way to my house on more than one occassion during the six weeks that I was out of commission and cleaned it from top to bottom. She did it because she loved me – and it needed to be done. No other reason.
Most recently, and remarkably after getting her devastating diagnosis, my mother became very ill and was hospitalized for several days. I was unable to visit my mother during the day, and Vickie (who by then was on disability because of her illness) went to her hospital room every day in my place, argued with doctors to make sure she got the best care, and dutifully reported back to me and other members of my family. My mother, who was often irritated over all the fussing, took to calling her “Nurse Betty”. But the truth is, that’s exactly what she was – a nurse by nature, personally and professionally. Vickie loved and took care of everybody – and so I was so proud of her after I convinced her to get into a medical assistant’s program and she did.
There are so many lessons for me in losing Vickie. Losing her reminded me yet again to love the people around me, and to tell them so while holding them in a tight bear hug, because you never know when they’ll be suddenly taken from you. Vickie was at my house just three days before she died. She didn’t look well, but I don’t think any of the family that was gathered there that day knew that it would be the last time we would see her alive. I can distinctly remember walking out of the kitchen, and seeing her from behind, sitting on my love seat, chatting happily with other members of my family. And I can remember sneaking up behind her, and planting a kiss on her cheek and telling her, “I can’t believe you got out of the house today! I’m SO happy to see you!”
And in a cruel twist of fate that I’m almost too embarassed to recount, I can remember being in the restroom when she asked my brother and sister-in-law to pray with her then and there. I could hear the prayer from where I was, and when it was over, I said “Amen” through my closed door, hoping that she would hear me and know that I wanted in on the prayer for her strength and recovery. I knew she was about to leave, but before I could finish what I was doing, her daughter Alisha and my brother Gary had already helped her out of the house and into her car. I missed out on the hug, the kiss, and the “I love you” that I undoubtedly would have received otherwise. And I never spoke to her or saw her alive again.
There is also a lesson to be learned by those who take care of everyone but themselves (like me). As black women, we often become the caretakers of everything and everyone around us, and forget about doing the things necessary to keep ourselves going, like fitting in the annual mammograms, getting the regular health screenings, eating right, and exercising. I am the biggest culprit here – I’m caring for an aging mother, a young son, and heading up an entire department at work. Finding time to see to it that I’m okay has become almost impossible, but I’ve resolved to make the changes necessary to ensure that I’m here as long as I can be, for the people I love, and for myself.
But perhaps one of the greatest lessons I learned from all this came from remarks made during Vickie’s memorial service by my niece Brandy, who is also one of Vickie’s step-daughters. Brandy’s message was essentially that it’s only when we lose loved-ones, that all of the disagreements, the misunderstandings, and the stupid fights seem so petty. Relationships in life are what they are – up and down, good and bad. I for one, personally think we only help ourselves if we can learn to see the petty squabbles for what they are as well, and learn to put them in their proper perspective. I know I’d take a healthy, smiling Vickie telling me off with her finger wagging in my face about something I said or did in a heartbeat, if it meant I could have her back.
A greater spotlight needs to be cast on health issues that affect black women most, and more people need to know about this horrible disease. Sadly, our healthcare system, like our political system is predisposed to de-value black women. I wish I could believe that Vickie received the absolute best medical care possible, but studies have shown that as an African-American female in this country, she may not have. I believe fully that the kind of reform that Senator Obama has laid out in his healthcare plan will ensure that all Americans have a chance at better treatment of deadly diseases like Scleroderma. There are foundations and efforts to increase awareness of Scleroderma, but most people are simply not aware of them.
What I now know is that though there is no known cause for Scleroderma, and no cure, early detection can mean the difference in an improved quality of life made possible by treating the symptoms of the disease, and a very quick descent into the crippling later stages of the disease. My friend Madonna, who died of the disease almost ten years ago, was consistently mis-diagnosed until there was almost nothing that could be done to prolong her life and ease her suffering. In a nation as great as this one, with a healthcare system unmatched in the world, there is simply no excuse for this.
My heart is breaking, because I lost someone that at times drove me nuts, but that I loved dearly, someone that I wish I had told that a little more often. So, if you haven’t yet, look at the video. If you have, look at it again, and think about that person in your life that drives you crazy but that you love and can’t imagine life without. Then call them up and tell them so.
Rest in peace, sweet friend. I’ll miss you.
Vickie Juanetta White
July 11, 1964 – October 23, 2007
For more information about Scleroderma:
Nonprofit organization dedicated to helping persons with scleroderma, enhancing public awareness, and funding research.
Scleroderma information provided by the Arthritis Foundation
A variety of information regarding the disease, including a number of additional references.
The Scleroderma FAQ is a comprehensive document about Scleroderma.