By profession, I am a music portrait photographer running around in such big cities as New York, Los Angles and Austin. By circumstance, I am a 26 year-old who happens to have MS.
That last bit can be a bother, but I like it much better when it isn’t.
Here’s a little bit of the backstory:
In 2009, I was attending Pepperdine University. One day, I ran out of one of my hardest business class finals, and jumped in the car. I had to get downtown to the photography studio to start figuring out how we would engineer this set idea for a really ambitious and rapidly approaching photo shoot. I buckled myself in, turned the radio on and as I shifted my gaze over my left shoulder to pull out of a tight parallel parking spot, I noticed everything double and separate. I rubbed my eyes. The further left I looked, the farther away everything got from each other. I couldn’t tell which the “real” road was and which the “other” road was. I rubbed my eyes again, squeezed them shut and re-opened. There were two pictures of the same world and I could not tell which was mine.
I knew that I was probably not taking care of my body as I should, being a 22 year-old college student (Stress… check; lack of sleep… check; probably not eating enough… check). Off to the ophthalmologist I went for further evaluation. The lens prisms he prescribed to modify my eyeglasses with, only corrected the double vision sometimes. This was not muscular; it was a nerve issue — the plot thickened and we reacted.
A gauntlet of tests ensued that summer: MRIs, EKGs, EEGs, blood work, nerve tests, Spinal tap, antibiotics. I was a healthy 22-year-old, and all of a sudden I was a patient in hospitals, with doctors of every specialty trying to diagnose me.
There were results that pointed to multiple sclerosis (MS), but nothing was conclusive, and some of the results that raised flags were results immediately contingent on other situations that weren’t mine. All other possibilities were diseases too rare, obsolete, or required symptoms I didn’t have and wouldn’t get for whatever reason, so were immediately ruled out. Complicating things further, each symptom that I had on its own were all circumstances perfectly healthy people have all the time.
What happened in my mind after all of this new hospital stuff was full-fledged “western medicine distrust.” I watched chemo ultimately kill my dad four years earlier, and I felt like I knew the hospital/pharmaceutical politics. It seemed doctors were trying to diagnose me with something so hard that they couldn’t pin, that I didn’t believe I had. Hospital bills, drug reactions, spinal tap complications, and anesthesia all followed. I was plugged into the wall, there were needles in my arm, my spine; I was terrified of every result. There’s just something inherently frightening about going this deep into such a thorough search of your complete physical makeup and having to sit back and wait patiently each black-and-white result, over, and over.
The double vision went away on its own after about a week, and I went back to business-as-usual. A second major symptom did not come on until a year later: a numb, tingling sensation from my knees down and in my hands, tips of my fingers. It was then when my doctors agreed; it was time to begin to discuss treatment.
My goals and career to me seemed to all of a sudden be in jeopardy, at the quickly developing and bright-eyed age of 22. The more I began understanding MS and my own new set of circumstances, the more my life slowly began to come into focus.
Thinking back I’m sure there probably were smaller, more seemingly insignificant indicators that could have helped point to the MS sooner, but that’s neither here nor there. What matters is that it’s clear that I have MS, no more tests and questions or unknowns there. Although there is no proven cure, there is a lot that I can do to manage it, which incidentally are all things I should have been conscious of anyway to live a happy and healthy life.
Read on: MS as a Blessing