How I learned to live with dystonia, a movement control disease

During my studies, my dystonia progressed and moved to my other leg: my toes curled into claws so I had to move incredibly slowly, but I kept walking. In fact, when I was in my mid twenties I moved to New York to work on Wall Street – ironically, one of the fastest moving jobs in one of the fastest moving cities. Although I was “successful” in the financial sense of the word, I got busy with work and neglected my general health and diet. The lifestyle of working insolent hours (coupled with my stubborn demeanor) made the disease worse.

Fortunately, however, I found a good neurologist who could advise me genetically. After finding out that my illness was genetic (I have the DYT1 form of dystonia, which means my DYT1 gene has mutated), I made the decision that I probably wouldn’t have children. Instead, I focused on getting my Masters of Business Administration (MBA) from Stanford, which my friends and family desperately declined due to my dystonia. Everyone came from a place of love and care, but I’m a stubborn person by nature. Please don’t let the illness dissuade me from the journey I know to take became my battle cry.

As with all challenges in my past, I took up the master’s program directly and found a circle of friends at Stanford who support me in every way. I’ll never forget her arguing over who can ride in my car for “VIP” treatment (aka front row parking). They took my handicap poster, which used to make me feel biased, and made it cool.

After completing my MBA in 2005, I got a job at American Express. From what I’d accomplished by then, it should have gone smoothly, but my dystonia just kept getting worse.