Tooth and Nail
I recently read Dr. Joel Salinas’ fascinating memoir Mirror Touch: Notes From A Doctor Who Can Feel Your Pain. It’s an expertly written account of a life shaped by synaesthetic perception, and I feel honored that Joel interviewed me for this project and shared some of my experiences in his book. I’ve been elated over the last few weeks witnessing Joel’s many media appearances where he reveals his neuro-atypical life with both grace and transparency. Dr. Joel Salinas is a fantastic spokesperson for synaesthesia; he is fabulously accomplished, articulate, and neurodivergent to the core. If you’ve not yet read “Mirror-Touch”, you can find it here.
Although synaesthesia is often presented as beautiful or alluring, it is in truth a neurological outlier that often comes with challenges, including sensory hyper-sensitivities and potential comorbities. Reading ‘Mirror-Touch” helped me feel more compassion for myself as I stumble through this world; the book also reminded me that my synaesthete kin are my very own neurotribe. Thank you Steve Silberman for adding this word to the lexicon. I’m confident there is tremendous value in finding community around the phenomenon of one’s neurodivergent status.
I am delighted by the Mirror-Touch book and the gathering of my neurotribe, but I am heartbroken in equal measure by this morning’s move toward dismantling the Affordable Care Act. Psychological and neurological conditions are already poorly covered by health insurance, whether that coverage is private or government sponsored. And, with higher premiums on the horizon for people with pre-existing conditions, I’m certain there will be dramatic increases in healthcare costs for neurodiverse individuals.
I’m baffled by the mind|body disparities in healthcare coverage, and it saddens me that mental health conditions are still culturally perceived as some sort of moral failing or fragility. I think many people would see me as broken if I revealed the depths of my perceptual differences and psychological challenges. It’s all lovely and fine when I talk of colored words and rainbow-hued numbers, but the minute I mention that the soundscape on MUNI makes me crazy, and I can only tolerate it if I wear headphones or rock gently in my seat, then I turn into a great big weirdo.
Guess what? I AM a great big weirdo, and I love my neurodivergent brain. I’ve learned to work with what I’ve got. I’ve found a career that supports my need for a sensory restricted environment including low light and control over ambient sound. Additionally, I have creative pursuits where I believe my opportunities are enhanced by my strange brain. Also, I’ve found my kin, from identifying the neurodiverse tendencies in my own biological family, to fostering friendships via social media with people on the spectrum, folks struggling with bipolar disorder, and fellow synaesthetes.
In the coming months, I may find that I am dropped by my health insurer, or that my $1200 monthly insurance premium goes up because I have pre-existing conditions such as a propensity toward anxiety and depression. I don’t know what’s next for me in regard to the upcoming gutting of the ACA. What I do know is that I adore my neurodivergent tribe, my Apsie friends, my OCD loves, and my synaesthete family. My own mirror-touch makes me feel your pain as if it is my own. And I will fight tooth and nail for our healthcare parity.