How I Learned To Live With Dystonia, A Movement Control Disease


While in college, my dystonia progressed and traveled to my other leg: My toes curled into claws so I had to move incredibly slowly, but I kept moving. In fact, in my mid-20s, I ended up moving to New York to work on Wall Street—ironically one of the most fast-paced jobs in one of the most fast-paced cities. Though I was “successful” in the financial sense of the word, I became consumed with the work and neglected my general health and nutrition. The lifestyle of working outrageous hours (paired with my stubborn attitude) exacerbated the disease. Thankfully, though, I found a good neurologist who provided me with genetic counseling. After finding out that my disease is genetic (I have the DYT1 form of Dystonia, meaning my DYT1 gene is mutated), I made the decision that I was likely not going to have children. Instead, I focused my attention on getting my Master of Business Administration (MBA) from Stanford which, due to my dystonia, my friends and family strongly urged against. Everyone was coming from a place of love and concern, but I’m a stubborn person by nature. Please don’t let the disease take me off the journey I know I am supposed to be on, became my battle cry. Like all the challenges in my past, I faced the master’s program head-on, and I found a group of friends at Stanford that supported every part of me. I’ll never forget them fighting over who got to ride in my car for the “VIP” treatment (aka front-row parking spots). They took my handicap placard, which was previously a source of self-consciousness for me, and made it cool. After graduating with an MBA in 2005, I got a job working for American Express. After everything I’d accomplished up to that point, it should have been smooth sailing, but my dystonia was progressively getting worse. 

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