Lupus Awareness Month: My personal battle

My high school track coach would tell me, “When you’re running, stop looking to the left and right because it slows you down. You’re competing with yourself. Just reach your personal best.” However, my thoughts were all about winning. I couldn’t care less about my “personal best,” and looking to see where my competitors were positioned was a hard habit to break. Before every event, he gave me that speech. I knew it so well, that I would further annoy him by saying it along with him. That same coach was generous at giving me advice about high-jumping as well. In high-jumping my desire to win was fueled when it came to Peggy from Plant High. Peggy was a phenomenal jumper and I was second best to her.

Fast forward to adulthood and months after childbirth, I started feeling ill. Fatigue, headaches, chills, pain in my joints and muscle aches became normal. One day I woke up in the middle of the night to check on my daughter and I couldn’t make it to her room. Years later, still suffering and untreated, my daughter was now 8 years old. Around three o’clock one morning, I had a seizure. Frustrated, I refused to go to the emergency room or to a doctor because I knew they would say the same thing they’ve been saying for years which bordered on being clueless. I suffered for ten years without so much as a hint of what could be wrong with me. My health continued to get worse. I have always been protective of personal issues so I went to almost every appointment alone, told no one until it was necessary and creatively continued to work without missing a beat.

Those times when I was in crisis, took its toll. The pain is described by some researchers and doctors as the same level of pain that comes with stage four cancer. I remember being in bed crying so loudly that my daughter ran into my room with a look of worry and sadness on her face that I had never seen before. I knew then, I needed to do something, but first, I needed to get myself together and get up out of that bed.

During one of the last track meets of my senior year of high school, I had to compete once again against Peggy. She held the high jump record at her school and I held the record at mine. The most I ever said to Peggy was, “Congratulations. Good job.” In preparation, to jump, I perfectly counted back my steps. The event started. Peggy cleared her jumps and I cleared mine. Once the bar was moved to whatever height my record was at the time, Peggy easily cleared it. So did I. My coach was a nervous wreck. The bar moved up to whatever height Peggy held as her record jump. We each had three jumps. Peggy missed her first one and so did I. Peggy missed her second one and so did I. Peggy missed her third jump and I was ready to suit up and consider this a tie. I had never cleared anything past my record and certainly not Peggy’s. I could see my heartbeat through my jersey. Coach pulled me to the side and reminded me to reach my hand back over the bar, arch my back and kick my feet. Most importantly, he said, “when you jump, look up at the sky,” and get off the mat fast. If the bar fell when you were off of the mat, you were considered clear. I rocked back to run toward the bar and ran those perfectly counted steps to the mark, jumped straight up and over, reached my hand back, arched my back, kicked my feet, did a backflip and rolled off the mat like lightning. I looked at the bar and it was still on the rails as still as the Statue of Liberty in the middle of the Hudson. I yelled like Steven Tyler on crescendo. I jumped on my coach like I was velcro.

As cheesy as that sounds it was my Rocky Balboa moment.

Fast forwarding once again, I finally went to a rheumatologist who diagnosed me with Systemic Erythematosus Lupus (SLE). Lupus, an autoimmune disease that mistakenly attacks healthy tissues, is often genetic but can also be caused by environmental factors.

After the diagnosis, I took everything the doctor prescribed which included having to inject needles into my upper thigh and abdomen and chemotherapy. I was teased about my hair because since I had so much of it, I didn’t lose any. The doctors said not to exercise, but I did. They told me not to work, but I never stopped. They told me to rest as more than not, but I didn’t. I spent a decade being someone other than myself and I refused to continue that way.

This health battle reminded me of high school. Today, I’m having more Rocky moments in this fight. At some point, I realized all of my coaches, in all of the sports I participated in, prepared me to win battles in whatever way I wanted to define the word. They taught me to build my mind and my body in a very strategic, often peculiar way so that I could be undefeated.

I stopped looking to the side and the back to compare myself and like to think I’m looking skyward like Coach taught me. All I know how to do is run this race the way Coach told me to run. Now that I’m better, I like to joke that I’m beating Peggy every day just to feel a bit of victory. I stopped taking the prescribed medications and the disease is now in remission. The pain is still active daily, but not as bad as it once was and I have had no crises in two years. I’m back to living my very best life.

I knew this fight would take a bit of work and time but I’m down for whatever it takes to win.

There’s no cure for lupus and it affects black women more than any other demographic. May is Lupus awareness month. Each May I say I will tell my story but I decline each time to do so because of how intimate this has been but if helps you in any way, I’m happy I’ve shared it with you.