Just before the New Year of 1997, when I was 20 years old, I woke up in my little twin wooden platform bed from which I had removed the old saggy mattress and was surrounded by white.
Blindness wasn’t what I thought it would be…I had always envisioned a black, sightless world, and this was very different. I couldn’t make out any shapes or colors around me and the only sense of anything that I was receiving was a blinding white light. In seconds a panic began to envelope me as I felt around for my teal and pink Swatch phone that had provided me with thousands of hours of service throughout highschool and by touch I dialed my boyfriend’s number.
“Put some cold water on your eyes,” he said.
The advice was almost laughable, but with no ideas of my own, I did as he suggested and slowly my sight returned. And the incident didn’t recur that day, or the next, until it was time to go back to school.
That year the snow was deep and I gazed around the campus in wonder at the beautiful drifts of snow that blanketed the world around me…so similar to the white that surrounded me only days earlier in my bedroom. Blinding.
The doctor at the Student Health Center gave me some eyedrops and referred me to my first ophthamologist, Dr. Chew, who diagnosed me with anterior uveitis in my left eye. It must have began months earlier for the inflammation to be so bad. In hindsight, I did have problems with blurred vision and red eyes but I dismissed everything because my final exams and MCAT were more important.
So I went on my way with a prescription of prednisolone eye drops, and when that didn’t work after a few weeks I progressed to taking prednisone orally and when that didn’t work I got a steroid injection directly into my eye (and yes it was as bad as it sounds). When that didn’t work I found myself referred to a neuro-ophthamologist who specialized in uveitis who then referred me to a rheumatologist and when all was said and done I still didn’t have a solid diagnosis of what’s wrong with me.
I do, however, have a “working” diagnosis of Behcet’s syndrome, which basically means that although they aren’t sure, my symptoms are closest to Behcet’s and so they’ll treat me as such because even if I had another type of autoimmune condition, the treatment would be the same.
That journey from waking up blind to getting a “working” diagnosis took at least 3 years, and since the diagnosis I have been struggling not just with my eyes but a myriad of other problems, and many include the side effects of the medications I had been using.
But being sick hasn’t stopped me from living my life. In the many years since I woke up blind I :
- got my B.Sc. with first class standing
- finished my M.Sc. with a full university graduate fellowship and a departmental scholarship I was granted for my writing ability
- got married
- had cataract surgery on my left eye, as a result of both the uveitis and steroid treatment
- had my first child. That pregnancy put me into remission until Owen was one year old
- went back to school for diagnostic medical sonography which helped me rediscover my love of medicine. I graduated at the top of my class 🙂
- had my second child. This pregnancy was a struggle that had me in the hospital at 13 weeks and at 30 weeks until I delivered at 38 weeks, and subsequently had a flare immediately afterwards
- had cataract surgery on my right eye
- quit my job at the clinic I was working at for five years over discrimination towards my illness and started a few new jobs
- had my third child, with some pretty gnarly surgical complications but she’s my only baby girl.
So that brings us to today, where I am a working mom in the suburbs with everyday problems, plus a few extra ones.
I created this site to share some of my insights, but also some tips that I’ve found helpful for managing my illness, my family, and my budget.