1999. I just completed my freshman year at The University of Texas at Austin. Like other Finance majors, I spent my summer interning at a banking firm. While driving home from the office one afternoon, I noticed a smudge in my right eye. At first, I thought it was a dirty contact lens. But even after I removed it from my eye, the haze remained. I saw an optometrist who referred me to a neuro-ophthalmologist, saying that what I had could be a brain tumor. The neuro-oph mentioned no brain tumor, but instead ordered numerous MRIs, lab work, and even the dreaded lumbar puncture. Multiple sclerosis? Lupus? Rheumatoid arthritis?
In the end, the neuro-oph had no answer. I was given the routine intravenous steroid treatment, my case being written off as simply “stress related.”
The vision in my right eye only partially recovered, and I learned to adjust to life as a cyclops. In 2001, I graduated with a Bachelor of Business Administration in Finance/Management Information Systems and returned to Houston to work as an oil and gas accounting software consultant.
I had been working for less than six months when my left leg started feeling cold. Donning three paris of socks did not help. The strange frigid sensation soon gave way to tingly-ness as though my leg was always asleep. Again I was referred to a neuro-ophthalmologist, and again I endured the interminable tests. This time, however, I was given the diagnosis of MS. Even though I did not exhibit any MS lesions in my MRIs, the doctor claimed that to experience two different neurological symptoms on two different body parts at two different points in time were enough to warrant a MS diagnosis, and so I began daily Copaxone injections.
Despite the MS treatment, I continued to experience multiple exacerbations, the worst of all culminating during the holiday season of 2002. First, my legs went numb. Then my arms. I had difficulty walking, then standing, then feeding myself. The strangest thing was no matter how much fluids I drank, I could not urinate.
Surely if I chugged four glasses of water, my bladder would eventually release, I thought.
What a mistake that was. I ended up in the ER with a catheter inserted up my urethra. They drained 1200 cc of urine that night—the equivalent to a little over half an entire two-liter soda bottle. The nurse had to switch out the foley bag halfway through the cath because my urine was overflowing.
I tried to get discharged afterward but by that time, everything below my neck had become paralyzed. I checked in as an inpatient and was immediately given morphine and high dosage steroids. I spent two weeks in the hospital, including Christmas, receiving physical and occupational therapies until I was able to transfer from bed to wheelchair (with assistance, of course) to the doctor’s satisfaction. Three months after I came home, I was diagnosed with NMO: my doctor had reached the end of ideas, and my constant progressive flare-ups in spite of the MS therapy left him with NMO as the default diagnosis. It was just as well because after the Mayo Clinic developed the IgG antibody, I tested positive.
After trying IVIG and immunosuppressants (azathioprine), I am currently receiving Rituximab infusions as my main source of NMO treatment and have been faring well since 2008. (And by well, I mean relatively stable.) This did not, however, come without a price. Before I received my first round of Rituximab three years ago, my vision had deteriorated even further to what they call “counting fingers” at one foot, meaning I can only count the doctor’s digits if he waved them twelve inches from my face. The last four years of my life were spent learning how to get around with a cane, relearning how to make a peanut butter jelly sandwich, figuring out new ways to adapt to the vision loss.
After five years of being on long-term disability ever since the fortuitous attack of Noel 2002, I had returned to a childhood pastime of reading. What else could one do when bedridden and blind? Once feeling oozed back into my hands, I started pounding away at the keyboard, journaling my fears and triumphs with the illness. Writing became my coping mechanism, and I discovered I was good at it. Writing for myself led to writing for my friends which led to taking online writers’ workshops which led to getting into an actual graduate program for creative writing. Now it is 2011, and I am in my third year of University of Houston’s Creative Writing Program as a Master of Fine Arts candidate in Fiction. Every day I am awestruck by the irony of how it took a disease as challenging as NMO to make me realize my true calling in life. Through words, I hope to express compassion for not just the sick and oppressed but for all humankind.