LIVING WITH ...
A Normal Life, Plus Agony
 Chris Maynard for The New York Times |
Janis Spurlock-McLendon is a social work consultant with the Connecticut Department of Public Health. |
Living With Sickle Cell Disease
by Janis Spurlock-McLendon
I do not know what it would be like to live without sickle cell disease because it is a disorder that you are born with. I think that this may make it easier because I haven't had to deal with the loss of good health. That's not to say that having sickle cell disease has not caused me to make adjustments in my life. In fact there have been many, and they influence the way I live and the choices I make.
Sickle cell disease is a genetic disorder that gives the red blood cells an abnormal shape, making it hard for them to pass through veins and capillaries. This may cause anemia, severe pain, susceptibility to infection and the possibility of stroke and damage to vital organs such as the kidneys and liver.
I was diagnosed at two, and I am now forty-five. I'm quite proud of my age because years ago it was commonly believed that people with sickle cell disease did not live to adulthood. The truth is that life span varies as does the course of the disease. I remember feeling exuberant when I reached forty. Although I always tried to ignore the generalizations about life span that I had heard and read about throughout my life, they lingered in the back of my head. I had never really stopped hearing the voices of high school acquaintances inquiring sympathetically of me at the age of fifteen, "Are you going to die?" Or the whispers of friends and family who couldn't understand why my parents would waste their money sending me to college because I wouldn't live long enough to use my education.
Fortunately, I had parents who understood that the quality of my life was what mattered, and who had high expectations for me despite my illness. Ironically, at forty five, I have now experienced the death of a number of childhood friends (who I fully expected would outlive me) from causes like cancer, AIDS and car accidents.
For the most part, my life is quite normal. I am a wife and mother and work full time. I am affected most by the anemia, which tires me, and the painful episodes called sickle cell crisis, which can be triggered by overexertion, dehydration, chilling, infections and high altitudes. Though I try to avoid these things, every six months or so I have to go to the emergency room to be treated for pain.
I do have some underlying fears that are related to my illness. Recently I was invited to Barbados but hesitated before saying yes due to my anxieties about becoming ill outside of the country. I worry about not having adequate health insurance or sick leave and base my employment decisions on this.
Faith in God, the love of my family, and a positive attitude are the things that sustain me. The support that I receive from family and friends is crucial to my ability to maintain a normal lifestyle. I have been able to accomplish the things that I have due to the fact that my parents helped me to develop a vision for myself that expanded beyond my illness. I try to avoid feeling overwhelmed by the uncertainties of the disease. I look to the future and plan to spend it watching my children grow up.
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