Estimated reading time is 7 minutes.
Note: This blog post is not nutrition-related.
It’s somewhat of a ‘coming out’ post as I’ve only shared this story with a small number of people in my circle.
It was 7 years ago that I started having what I’ll call bizarro symptoms. Both of my eyes began blinking uncontrollably, forcibly, and frequently.
It would happen at random times, but there were also patterns I started to notice. I would blink A LOT while running, listening to other people talk, while driving, working on my computer, moving around the house, walking outside or in public places. It could happen at any time of day, any place, any kind of circumstance. Random and yet not.
After different kinds of diagnostic testing with an allergist, ophthalmologists, and a neurologist, I finally had a diagnosis: benign essential blepharospasm, a form of focal dystonia.
A quick Dystonia 101:
Dystonia is a neurological movement disorder that is thought to originate in the basal ganglia of the brain. It results in a misfiring of neurons to different muscles in the body, causing spasms, repetitive and uncontrollable movements and/or postures. The spasms can occur in one muscle group of the body or in multiple areas of the body depending on the type of dystonia. For some people with dystonia, they experience a high level of pain. Quality of life is often impacted quite significantly.
There’s no known cure at this time. Mainstream treatment options include medications (anti-convulsants, sedatives, etc.), deep brain stimulation (brain surgery to insert a device that modulates brain activity), and Botox injections to weaken the affected muscles. None of these fix or address the underlying cause; they are merely attempting to reduce the severity of the symptoms.
Researchers don’t know exactly what causes dystonia to manifest itself. It sometimes occurs as part of another disease (such as Parkinson’s), however, it can be genetic or caused from brain injury, medications, or ‘other insults to the nervous system’ (i.e., a physical trauma and/or psychological).
The chart below shows the various forms of dystonia and areas of the body that can be affected.
What caused my blepharospasm? It is hard to say and no one will ever know for sure. I do know that in the year prior, I was training and racing a lot (running my fastest races ever), under a fair amount of work pressure, under-fueling (in hindsight), and emotionally digging holes from various places in my past and present life. I ran my first ultra races the summer this condition developed. Did any or all of this cause my dystonia? Or was it building up from years prior? From a bike accident where I hit my head? From a medication I had taken for minor surgery? Or other traumas I never dealt with adequately? Who knows.
In late 2012, I decided to go with the conventional treatment of Botox injections in my eye area (eyelids included). Before you say “Lucky YOU for having a real excuse to get Botox!" (and yes, I’ve heard this before from some friends), let me say that I would trade just about ANYTHING to not have had to deal with this condition or use Botox for relief… just to keep my friggin’ eyes open. It was not pleasant.
Botox is temporary. It doesn’t make the spasms disappear and life to suddenly be rainbows and unicorns. It simply reduces the force of the contraction as it paralyzes the affected muscles. It did work well in its infancy, but I had to repeat the injections every 3-4 months. Daily living was more manageable. I was able to continue being an athlete, continuing with ultra races (including the Leadville 100 and Comrades runs), triathlons, and my first Ironman with my eyes staying more open than closed. It was never easy, but life was semi-doable. Eventually the Botox stopped being as effective. I got scared after a bike accident in early 2016 that left me with a fractured elbow and more mental and physical trauma.
Through these years, I’ve been to dark places mentally. I felt I was losing ‘my place’ in life. As an athlete, a friend, a partner, a human being. I’ve screamed myself hoarse, cried until there were no more tears, hidden from friends and family, muted my brain with alcohol, begged the dirt gods to just let me run free from this trap, and have pondered many a time whether to end the misery.
It’s been quite a journey. I stopped Botox in December 2016 after coming to terms that I needed and wanted to stop band-aiding, fighting, struggling, battling, and suffering. It was time to go deeper inside myself for healing, to seek more alternative therapies, and learn to live with the condition instead of against it. The fight needed to end.
My therapies have included working with one of the best dystonia experts in the world, developing and honoring a consistent meditation practice, and working with a local neuropsychologist to further calm my nervous system and explore the Self. I returned to playing guitar (after a ~20-year break), running freely without expectations, and letting myself be open to the ebb and flow that each day brings. I changed my job situation to start the Nutrition Mechanic and have found even more love and joy in the work I do with athletes. Like a channeling of energy through them while also letting their excitement for sport adventures channel through me.
It is incredibly fascinating how just giving attention to breathing, being in the present moment, and “letting it flow, letting it go” has helped me to “be” where I am. I believe my change in mindset has made room for this thing called ‘neuroplasticity’ to take better hold in my recovery and healing process.
If you’ve gotten this far, thank you for reading, having an interest, and letting me be vulnerable with you. I’ve thought about this day of sharing my story for years. To share it now is frightening and freeing at the same time.
I’m not looking for sympathy or Poor You comments. I’m just trying to make some space for my human self on this planet and to live with less fear.
Lastly, September is Dystonia Awareness Month so an extra thank you for learning about this fairly rare condition. Visit the Dystonia Medical Research Foundation if you’re inclined to learn more or certainly feel free to drop me a note.
-Dina
We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known, and when we honor the spiritual connection that grows from that offering with trust, respect, kindness and affection. -Brené Brown
We all have our own journey