Why I Walk : Sharon Slaughter
In 1996, I left Poland after the end of my Peace Corps service, and headed south to small village in northern Slovakia. There, I spent a week hiking and meditating on what would come next in my life. After three years with the Peace Corps, I felt strong and accomplished. I wanted to continue that feeling by returning to graduate school, and, somehow, doing something good in my life, something that would make a positive difference in my community.
By the next summer, I couldn’t get out of bed because my left hip was so inflamed. At that moment, I knew something was wrong. That morning had been preceded by months of dealing with spiking fevers (up to 107 F at one point), an energy drain that turned simple tasks like showering into a major undertaking, swelling hands and feet that turned blue and white if the temperature dropped below 77 F, rashes, widespread pain, vomiting, migraines, and nearly constant nausea.
I had no insurance at the time, and I was working two part-time jobs that required two hours of roundtrip driving. Luckily, the county had a grant to help people in my situation, the uninsured who qualified for neither Medicaid nor Medicare. After months of blood tests, we discovered that I have lupus.
My reaction: I’m greater than this disease. I will beat it. I will continue to pursue my goals. Unfortunately, lupus won. I couldn’t keep up with the pace of normal life anymore. I had to quit my jobs, give up the idea of returning to grad school, and pursue a disability claim. I was advised to live “a simple life.”
It was hard to believe. Me? On disability? How would I live? Where would I live? What is my life? WHO AM I? This wasn’t how my life was supposed to go. Depression and anxiety became my norm.
In the late 90s, the internet was not ubiquitous. The information superhighway was simply a dirt road accessed through dial-up. I searched chat rooms, my local library shelves, and doctors’ offices for answers to my many questions on how to live with lupus. I couldn’t find any information beyond the basic, medical definition of lupus.
I have been lucky that lupus has not attacked any of my organs. Instead, I live with many of the symptoms described above. Every day, I fight against the wall of fatigue, pain, and brain fog. Generally, I prefer not to leave the house because it drains so much energy from me.
Why do I walk? I walk because I have suffered familial rejection, the loss of my career, and bullying because of lupus. I walk because I was so confused and lost when I was diagnosed and nobody was there. Nobody should have to suffer through that. Lupus awareness has become a passion. Once lupus has been brought fully out of the shadows, I believe we can find a cure. Until then, we need resources to teach us about what is happening to our body, forums where we can get and give support, education about pharmaceuticals and worthwhile alternative treatments. We, also, need to know that the medical community understands and cares about our struggle. I walk for the thousands of lupies who need medical care, support and disability coverage, but who have no advocates. I walk, also, so scientists will one day understand where and how lupus originates so that we might rid the world of this cruel disease.
Who am I? I am Sharon Slaughter. I have lupus. I am disabled. I live with my mother and my dog. I, also, teach one course at a local college, enabling students to become active citizens in their community. Awareness and compassion begins with one person and grows into a community. Why do I walk? For the past, the present, and a better future. Let’s fight this cruel disease and never give up until it is eradicated.