I Wish I Could Pause The World Around Me, Part 2
I was diagnosed with lupus at the age of 16 after 4 to 6 years with unbearable and sometimes untreatable headaches. When I was diagnosed, in 1990, I was confined to the bed of an intensive care unit. The symptoms, pericarditis, hypertension, pleurisy, pleural effusion, irritable bowel syndrome, seizure disorder, and anemia. (Read Part 1 of this series.)
Luckily, my time in ICU was during the summer so I did not miss school. School has always been a priority in my house. My parents took me out of public school because school principals and the county superintendent thought I had a mental illness when in fact I was suffering from a well-documented chronic illness. So my parents basically paused my education. My parents searched for a private school that could be flexible given my illness, that could provide me with an environment that I could thrive. They found Horizons School in my hometown of Atlanta, Georgia.
My high school experience with lupus
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 1 year by providing a tutor. I excelled at Horizons but that didn’t mean that my condition disappeared. There were frequent doctor appointments; moments when I slept in the administrator’s apartment or a classmate's boarding room if I were sick with stomach pains, jittery from the steroids, or had a headache. 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. Despite my challenges, I ended up graduating at the top of my high school class and being accepted at the University of Miami on a scholarship to study marine biology.
Stress of college and lupus
Little did I know that the stress of college could impact my studies and my condition even though I took a week-long patient management course before leaving for school. I never asked for or even realized that I could request disability accommodations in high school because I had lupus. My first year of college was tough and my second year was worse. I didn’t mind the outdoor science labs because I kept myself protected from the sun. I didn’t realize, however, how much lupus could affect my memory and my energy.
Lessons learned with lupus
Reading the huge science books and then trying to memorize the same was just exhausting. Standing in the biology or chemistry lab for 4 hours was too much and there were plenty of subjects that just seemed abstract.
The campus was huge and I lived on the other side of campus. Spending late hours in the library and basically taking the equivalent of 5 courses so I could graduate in 5 years. Steroids affected my sleep patterns and my other meds came with their own side effects. I tried to navigate college as if I did not have lupus. There were certainly times in which I was in denial. I tried to keep up with my friend’s activities and join friends on social outings. I joined the choir and got involved in an activist group.
Looking back on it now, I should have received some disability accommodations for each course and I probably should have studied harder. I certainly learned, late in my life that I have a chronic illness that can be both difficult but endurable if I recognize the condition and take the steps to fight it with all my might.
Have you ever had to change holiday plans because of lupus?