Sometimes life flips us upside down and leaves us gasping, wondering how we will ever be the same. The simple truth, the hard truth, the painful truth, we won’t. Tsunami level change means we can never go back, but instead must create the future, one step at a time. I experienced this daily as I find my way to fully LIVING with a rare movement disorder, cervical dystonia.
In early spring 2023, I was training for an amazing ultra marathon in the Swiss Alps. It was 55 KM, over 3000 M of vertical along the Aletsch glacier (my favorite place in the entire world). I remember talking with my friends about my training and wondered why of all the body parts, my shoulder and neck were the sorest after my training. It wasn’t my legs or feet. It was my neck. I hit the gym, added in a bunch of stretches and strengthening and kept going. Within 4 months of completing the ultra, I could barely look left and despite best efforts, I lost my body’s orientation for forward. I went to my doctor and started physiotherapy. We also tried dry needling twice weekly in the pursuit of some pain relief. Yet, nothing worked. Every day was worse than the one prior. The pain was off the charts, the migraines diabolical. I stopped running. I found myself crashing into poles, doors, people. I started pulling on my hair braid to force myself to see forward.
During a walk with a close friend, I shared that I thought I had a neurological condition. Was it MS, Parkinson’s? Leveraging my inner research nerd, I dove deep into the literature and found the name of my mortal enemy – cervical dystonia.
Navigating Swiss healthcare, outside of my native language, with a suspected rare disease provided a front row experience with the current patient journey complexity. Finding doctors who knew how to treat me was far harder than an ultra. I am the patient where all the residents are brought in, the only example of cervical dystonia they will ever see in their training. The questions I ask my doctors most often receive a deep breath and ‘I don’t know’ as the answer. And then we start the hypothesis generation and experimentation.
During my journey, I have met so many patients struggling with a health Tsunami that has changed everything, trying to find stability to build back their life. With a life changing diagnosis, we all dream of finding the new normal, the peace after the storm, the joy that makes life worth everything.
I would be ecstatic to write that my dystonia is under control, but that would be a lie. Instead, I would say the dystonia and I have figured out how to exist together. In the tiniest of steps, I have learned to move again and reclaim so many joyful moments. It’s so different from my pre-dystonia days. Yet, while my Tsunami has changed my life so much, I found my grit, my humor, my humility and somehow discovered who I am as a rare disease patient and life science innovator.