I had mononucleosis for four months before the doctors began testing. Apparently, it is unusual for anyone to have chronic mono, but I was too sick to care. My deterioration was quick. Within a week, my walk was reduced to a torturous hobble and my arms weighted my shoulders. Dull, mindless pain … and that was just from watching daytime television. My condition during those first months changed my life drastically. I was too tired to read — my favorite pastime –, too stiff to chew and swallow, and my fingers were so unyielding that they stood on edge constantly, even as they tirelessly struggled to close and make a fist. Fevers made the pain bearable; they wrapped my body in a placating hearth, confusing my mind and alleviating my suffering.
I oftentimes refused to medicate because the fever was a welcome relief from the pulsating pangs that engulfed me. I was now a ghost of my former self, watching soap operas, with my own hair falling out of my head, one clump at a time. Rigorous medical testing ensued. Each night after blood was drawn, I wailed in bed, desperately wondering if they could take any more blood. They could. Tests ruled our Lyme disease, syphilis, hepatitis, fatty liver disease, and the doctors seemed confused and disheartened by my range of symptoms. My endocrinologist, gastrointestinologist, gynecologist, and nephrologist were boggled when the disease began to affect my kidneys. Pain became my college as my friends began their respective universities without me. As they wrote emails about classes, rushing, and liberation, I stopped writing about the embarrassing medical testing, my diseased body, and my addiction to watching Iron Chef when I was too weak to eat.
I finally began hoping, not for a cure, but for diagnosis. One night, too exhausted and ill to sleep, I began reading the Merck Medicine Manual, using a pen to turn the pages. After considering my symptoms, I diagnosed myself with the chronic autoimmune disease, Systemic Lupus. After I presented my case, my internist agreed to test me for SLE. The medical community has by in large ignored SLE, a disease that doesn’t distinguish between the good and bad when ravaging the cells of the body, and it took my own driving force on the obscure diseases in the Merck Manual to diagnose myself. The blood tests were overwhelmingly positive, but still inclusive, since they make up only four of the eleven criteria that are used to diagnose this oftentimes-deadly disease. After further testing, I had 9 out of 11 … I had correctly diagnosed myself with what Reader’s Digest calls one of the ten most under and misdiagnosed diseases in America today.
After the blood tests were in and criteria was established, my internist immediately referred me to a rheumatologist, who allowed me to schedule an appointment, despite a two-month wait-list of elderly arthritis patients, because of the desperation in my voice and the gravity of my condition. I began begging for relief, and despite being lectured on the cons of corticosteroids, a devastating immunosuppressant whose side effects include an almost unavoidable weight gain, a jump of blood fats and cholesterol, a lowered immune system, acne, and what doctors have dubbed “moon face” (a distinctly round face), I asked my doctor to put me on them that night. I felt alive again. I welcomed the relief, side effects were just that: inconveniences to an otherwise relatively normal existence.
For the first time in close to six months, I was able to close my fist, an external symbol of triumph, resolution, self-determination and power. I began a very new and different life.
After my diagnosis, “I have lupus” became my mantra, my own ostensible, inner strength beating like a drum. Real work began: physical therapy and Pilates helped me build my stamina. Lifestyle changes followed: no more sunlight, learning to listen to my body, learning to ask for help, and eventually being able to listen, adapt, and act on behalf of a community of young women yearning for emancipation from pain and for the healing power of health. I began my education at the University of Southern California, still on steroids and other immunosuppressant drugs, determined to be a healthy advocate and example for other people temporarily trapped by their autoimmune disorders.
I began working with the Minority Affairs branch of Student Senate, promoting the often-underrepresented Students-with-Disabilities cause. For instance, the University was made aware of the struggles of the disabled to move between classes. I was instrumental in revamping the university policy on disabled students by allowing physically handicapped people to change their class schedules to be more accommodating to their specific disadvantage. In addition, I began speaking to various university communities about women with chronic autoimmune disorders. I helped to plan a citywide walk in Los Angeles to raise awareness and funds for this charity. In law school, I wrote two papers exploring the both current law of the chronically ill and disabled in higher education, and explored and proposed new policy that would allow students to complete their degrees with dignity.
I received physical energy from helping others and speaking to people about personal power in pain. Through struggle and even more profound triumph, I found my life passion and goal. When I found my voice, I realized that I wanted to dedicate my life to giving a voice to those deprived of theirs, to give a hand to those still too stiff to form a fist, and to be the support to those still too weak to be their own backbone.
Earning my law degree and teaching degree are tools that I needed to fulfill my life dream and continue to be an example of energy in a community that is often drained. Through my companies, which focus on holistic advocacy, I will be able to show that people with disabilities have the power to make a difference, and are oftentimes handicapped not because of their own bodies, but because of cultural stigma. Although I still sometimes walk with a limp, my life since diagnosis has been filled with energy and ambition, and I know that I can continue to succeed, not despite being a woman with lupus, but because of it.