How It All Is Meant To Be: My Friendship With Stevie, Part 1
Last updated: March 2021
I was diagnosed with systemic lupus erythematosus in 1990 at the age of 16 after 4 to 6 years with unbearable and sometimes untreatable headaches. For years, my parents consulted psychologists, neurologists, therapists, nutritionists, chiropractors, and even took me to a headache clinic. I was on a national news show 20/20 while in 8th grade and remember my mother stating on TV that she even considered a witch doctor.
My parents took me out of public school because school principals and the county superintendent thought I had a mental illness, even though my chronic illness was well documented on 20/20. So my parents basically paused my education. My parents searched for a private school that could be flexible given my illness and provided me with an environment that I could thrive. They found Horizons School in my hometown of Atlanta, Georgia.
I describe Horizons as a hippy school, but really it can be considered new age, alternative, progressive, and just plain awesome. We called administrators and teachers by their first name. The school always brought in progressive speakers. Since my parents removed me from public school in the middle of my 9th-grade year, Horizons permitted me to complete my 9th and 10th-grade courses in one year by providing a tutor.
Lupus still made school difficult
I excelled at Horizons but that didn’t mean that my condition disappeared. There were frequent doctor’s appointments. Moments when I slept in the administrator’s apartment or a classmate’s boarding room if I were sick. There were times when I went home early because I couldn’t bear the pain or I had a medical exam. This meant missing school events or participating in extracurricular activities or social events. Missing classes during the 9th/10th-grade year didn’t affect my grades at all. I excelled.
In the last semester of my 9th/10th-grade year at Horizons, headaches were the last thing on our minds. I began to suffer from chest pain while I walked to and from the bus stop on a daily basis. I was short of breath every time I traveled up the stairwell to my bedroom. I crawled along the floor because the pain was so horrible. I could not eat without vomiting. My muscles ached. I lost weight and I had minor wrist pain.
By summer, my internist finally located the inflammation in my lungs. He thought I had pneumonia. I remember taking driver’s education that summer. I constantly coughed and had a sore throat. I was barely able to wrap my hands around the steering wheel during simulation classes. I think I ended dropping driver’s education after 2 classes.
My lupus took a turn
Finally, my internist admitted me to the hospital where I progressively got worse. My wrists and knuckles swelled. My pulse and blood pressure increased, my fever hit extreme temperatures, I hallucinated, and I had a seizure. I was subjected to embarrassing tests, after all this was 9 years after the first case of HIV was discovered in the U.S. The infectious disease doctor who handled my case consistently removed my family from the room not knowing or even understanding my condition.
I had pericarditis, hypertension, pleurisy, pleural effusion, irritable bowel syndrome, a seizure disorder, and anemia. I pretty much had tests run in every corner of that tall midtown hospital. I was admitted to the ICU and eventually diagnosed with lupus. After leaving, I had appointments with numerous specialists – an experience I live to this day.
Finding support and friendship
On the bright side, lupus connected me with 2 very wonderful women who gave me inspiration. My mother who has a background in both social work and therapy insisted that I attend a support group for people living with lupus. There I met a man confined to a wheelchair covered in blankets and strapped to an oxygen tank. I was scared. Then I saw two women who seemed to be taking things in stride. One of those women was Kathleen Lewis, author, nurse, advocate, support group leader, and spiritual guide. Kathleen taught me to be the man I am today by not placing limits on who I could become.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?