I have been an advocate for my loved ones for as long as I can remember. My mom with breast cancer when I was in college as well as a second time and lung cancer too. Also for my sons, including one living with rare epilepsy from a young age, and their medical challenges. For two years, from 2021 to 2023, I had long term vertigo. This was the first time where I was the patient.
To this day I don't know what caused it - possibly a consequence of covid or a medication change. It was a very difficult time as I balanced work, life and family. I was worked up by multiple doctors to rule out all kinds of brain insults and other potential causes.
The doctor that was my quarterback was supportive of the many interventions – balance therapy, physical therapy, medication, cognitive behavior therapy, visual therapy, meditation, music therapy and more. However, his number one recommendation was to dance. This was a triple boarded medical doctor from a top academic medical center who was suggesting that the fastest route to recovery was through dancing –swing, modern, latin, ballroom – take my pick.
Stubborn as I am, I continued to try everything under the sun giving short shrift to dancing. Maybe a little swaying or disco dancing in my basement here or there. Finally, out of desperation, on the one-year anniversary of whatever underlying insult caused the terrible symptoms. And distressed that this was going to be my permanent state of being – my husband and I started weekly salsa lessons supplemented by regular in home practice sessions.
The weekly lessons became something we very much looked forward to. They were hysterical as we swayed, stepped, and moved to the music with a room full of strangers. We laughed, we stumbled, we stepped on toes, we argued about who should lead (can’t help myself), and we laughed some more. It was some of the most fun we had during another very stressful time. And soon after committing to regular dancing, I noticed the symptoms started to subside.
Could it have been all of the other therapies and interventions finally kicking in, a combination of everything or even just the passage of time – possibly. But I would like to think the dancing was a significant part of it.
My biggest take away from this life changing and challenging experience is there are only so many things we can control. And sometimes letting go and doing things that bring us joy, give our brains a break, challenge us in new and different ways is the thing we think we have the least amount of time for but the most important thing we actually need.
Keep Dancing to me means literally keep dancing and ask your tribe and your loved ones to dance with you. It may not be the cure, but hopefully it will bring moments of joy, laughter, and connection no matter what you are facing. And we can all use a little of that.
Ilene Penn Miller, JD, LLM
Caregiver, Advocate & Salsa Dancer
Rare Epilepsy Network (REN) Director (rareepilepsynetwork.org)
Epilepsies Action Network Cofounder & Leader (epilepsiesactionnetwork.org)
Rare Epilepsy ECHO Project Co-Lead (https://www.epilepsy.com/programs/echo)