There’s a book coming out next year, one that has it’s own incredible story to tell. This isn’t a work of fiction, but the pages will provide exquisite images printed in dream-like color, revealing fantastic objects that instigate multi-sensory experiences in the viewer. This isn’t a memoir, but will have first-person accounts of the uncanny trait of cross-modal perception. And, while it isn’t a research journal, the book will also have multiple papers presenting cutting-edge information on the neuroscience of synaesthesia. This is a most unusual project, one that brings science and art and synaesthesia together in one superb volume, and I very much hope it serves as a landmark publication.
Synaesthesia: what is the taste of the color blue? promises to be truly unique. While there are many nonfiction works on the topic of synaesthesia, a handful of art books, and even a few novels, there isn’t anything like the Synaesthesia: what is the taste of the color blue? available to readers who want to explore the synaesthetic experience through the lens of multiple creative disciplines and various scientific fields. This volume is a companion to the series of events hosted in Los Angeles, California in the Autumn of 2017, coordinated in collaboration between Building Bridges Art Exchange, the UCLA Art | Sci Center, and the International Association of Synaesthetes, Artists, and Scientists. Over several weeks, we presented an installation featuring works by a curated selection of international artists, Synaesthesia Dance Experience (SDE) a scintillating performing arts event, concerts, author readings, and a symposium attended by scientists from 9 countries. We collectively called these events Synaesthesia: what is the taste of the color blue? after the name chosen for the installation.
Together, they were nothing less than fantastic! Honestly, there hadn’t been anything like Synaesthesia: what is the taste of the color blue? in the United States to date, and I’m incredibly honored to have been part of the creation and administration of these events. They remind me a bit of a small-scale version of a world’s fair, or a bienniale, where multiple parties collaborate on a series of joint projects that are ultimately about revealing art and science to the public. And, while the Los Angeles events are concluded, there is still a growing audience for Synaesthesia: what is the taste of the color blue?. We would really like to host future events at museums and galleries in the United States and abroad, and to watch this project blossom.
Our very best opportunity to get traction in the arts community for this groundbreaking installation is to publish a catalogue featuring the art, artists, events, and symposium. Acquiring funding for this publication is constantly on my mind these days, as it will likely take about $20,000 to make this happen. That’s a big sum for a small organization like IASAS, but I think we can make it happen!
We have 24 hours remaining to our indiegogo campaign for Synaesthesia: what is the taste of the color blue? which has exciting perks for donors at every level. We’ve chosen a flexible goal, and right now, we’re focused on raising a minimum of $2500 to get the ball rolling. You can learn more about the campaign here. I do hope you’ll join us as we bring this landmark catalogue to publication, allowing our book to tell its wonderful story.
What a pleasure it has been over the past few years moderating the Facebook Mirror-Touch Synesthesia page. In committing to this project, I’ve found the loveliest opportunities to create MTS community, and to connect with fellow MTS synesthetes. It’s been both surprising and inspiring to field inquiries from folks who are curious about mirror-sensory phenomena, or to point these people to the best source for answers to their questions about MTS. I’m rather awed by the international reach of the mirror-touch page, and while Facebook is going through some serious growing pains, I’m confident that the global synesthesia community will continue to benefit from our capacity to connect via the interwebs and social media.
While I’ve managed this page for more than 2 years, I’ve noticed a recent increase in queries, most certainly fostered by Maureen Seaberg’s fascinating article in Glamour Magazine featuring Megan Pohlmann, a pediatric nurse who has mirror-touch. And, I anticipate this uptick in interest to continue over the course of 2018. Dr. Joel Salinas MD has an upcoming Cambridge TED talk, and both Megan and Joel will appear on the Today show on Tuesday April 10th. The CNN Mirror-Touch “Great Big Story” will hit 750,000 views in the next few days. And, as mirror-touch synaesthetes become increasingly vocal, I anticipate we will hear more fascinating stories about living with this neurological trait.
The questions and comments that come my way regarding mirror-touch synaesthesia have helped me understand how difficult it can be for people who don’t have synaesthesia to understand what it’s like to have conflated senses. But what’s even more challenging is fielding inquiries from people who seem to have experiences that are similar to MTS, but aren’t (to the best of my knowledge) wholly synaesthetic in origin.
Every week, I get at least a few responses on the Mirror Touch Facebook page from someone who writes that when they walk into a room and find another person who is sad or troubled, they feel those emotions. Or, they write about how keenly they feel other peoples experiences…their joys, fears, and heartaches. These individuals often tell me how relieved and happy they are to know there’s a name for this….mirror-touch. What these people are describing, though, is not necessarily what I would call mirror-touch; it’s a highly tuned sense of empathy. Some of these respondents are so profoundly in touch with other people’s emotional experiences, I think it would be accurate to call them empaths.
Dr. Judith Orloff MD writes extensively about the topic of empathy and highly sensitive persons. I really like her definition of the empath as one who “internalizes the feelings and pain of others — and often [has] trouble distinguishing someone else’s discomfort from [their] own. I find the empath’s tremendous sense of connection with their fellow creatures quite remarkable. Additionally, I feel fortunate to have a friend and colleague, a brilliant practitioner of Chinese medicine, who truly embodies Dr. Orloff’s description.
But mirror-touch synaesthesia is not precisely the same thing as a finely tuned sense of empathy, or the experience of being an empath, although I think they often overlap. MTS causes individuals to experience the same sensation (touch) that another person feels. For example, if someone with this condition were to observe someone else touching their own cheek, the synaesthete would feel the same sensation on their cheek. As an MTS synesthete I literally feel on my body what I see with my eyes. Got a rash on your skin? My skin will feel tingly in the same location. Is the wind blowing your hair onto your face? My face will feel the ticklish sensation of hair on my face. But if you’re crying, I’m not necessarily going to cry too, and if you’re elated, I may or may not feel elated along with you. It’s literally that straighforward….what I see I physically feel. But I won’t always (and beyond my conscious control) mirror your emotional state.
I also get comments from people who work in the healing arts and share how, as soon as they see their patient, they know exactly what is wrong with that person. Or, when they put their hands on their client, they get images of that person’s health concerns. While this level of intuition is astounding, it too is not the same thing as mirror-touch synaesthesia. I think of these people as medical intuitives. I know very little about this type of perception, but I have read books by both Dr. Mona Lisa Schulz, MD, and Caroline Myss, two highly regarded experts in the field. I learned enough from reading their respective works to know that I definitly do not have that level of intuition, but I’m confident plenty of other people do.
It seems likely that there are many people who have an overlap in two of more of these conditions….MTS synaesthetes who are also empaths, empaths who have medical intuition, medical intutives who have mirror-touch. And, I’m sure there are some people who have all three. It also seems possible that the brain aberrations that foster synaesthesia also open one’s unconscious mind to other subtle ways of perceiving. Many people who reach out to me talk of their paranormal experiences, and I can’t help but think of MTS, high empathy and keen intuition as a series of interlinked experiences. As scientists continue to study synaesthesia, and artists continue to create from the experience of joined sensation, I’m certain some of these questions will be answered. But for now, I will continue thinking of these three traits as a sort of trinity, each representing a form of amplified human perception.
I’m lucky to have the loveliest synaesthete tribe!
It’s Saint Patrick’s Day and I can’t help but think of my mother. She was fiercely proud of her heritage; all four of her grandparents emigrated from Munster to Boston, then made their way west to the city of Springfield. My mother was raised there, in the Connecticut River Valley, where a Yankee version of Irish culture thrived. She grew up eating New England Boiled Dinner, not only on March 17th, but frequently, and made the best clam chowder I’ve ever had. My mother attended events at the Ancient Order of Hibernians Hall, and bragged about sitting on the lap of Franklin Delano Roosevelt as he campaigned in the Democratic stronghold of Western Massachusetts. And, she attended college at Providence Hospital School of Nursing, where her classmates were just like her: Catholic, Irish-American, and the children of recent immigrants.
But, when my mother moved to California in the mid-1960’s, she was saddened by the lack of community. Certainly there were families who could trace their roots back to the old sod, but there wasn’t much Irish culture in the Central Valley. She did her best to keep me and my sisters connected to her heritage, including teaching me to say póg mo thóin when other kids teased me for having red hair. But, ultimately, my mother felt isolated from her people; she pined for New England and the family and friends who were most like her in heart and spirit.
This same sentiment…creating community….is what I’ve loved most by outing myself as a polysynaesthete. I’ve met the loveliest people over the last few years as I’ve explored what it means to have synaesthesia. We “synnies”, as well as the researchers who study synaesthesia, seem to get each other immediately, and I need make no apologies for my mirror-touch squeamishness or my reticence for fonts and graphics out of sync with my internal color map. Although there are more than 80 forms of blended senses, and each synnie has their own unique experience with conflated sensation, simply having synesthesia is often enough for two synaesthetes to form a connection. Plus, when you get a group of us together, the conversations can be both illuminating and ridiculously funny.
I only know a few synaesthetes here in San Francisco, but it doesn’t seem to matter that my synnie friends are dispersed through out the world. Social media and email help me feel as close to them as neighbors, and our common experiences with blended senses unite us as a tribe. On this March 17th, when I am reminded of my mother’s hunger for her kin and clan, I’m grateful I’ve found my synnie family.
My friend Daniel took his own life. He jumped from the Golden Gate Bridge in the wee hours of Monday January 8th, 2018. His body washed ashore a dozen days later and 45 miles away, on the rugged San Mateo County coast.
I wanted to share this story with a gentler entry into the topic of suicide but it’s just not possible. There’s no way to smoothly unspool the guilt, the heartbreak, and the mirror-sensory pain I’ve been experiencing without the harrowing revelation that Daniel leapt to his death.
I’ve learned more about the Golden Gate Bridge in the last few weeks than I ever wanted to know:
It was once the world’s most popular structure for suicide; it has since been eclipsed by the Nanjing Yangtze River Bridge in China.
Most people leap from the eastern ledge where the views of the city are staggeringly beautiful.
The deck of the bridge is 220 feet above San Francisco Bay.
The water temperature below hovers around 50 degrees Fahrenheit.
It takes 4 seconds for a leaper to hit the water.
The impact is equivalent to an 80 MPH head-on collision.
Jumpers succumb to massive blunt force trauma
or they die from hypothermia
or they drown.
I’ve also learned that in 2016, the United States Department of Homeland Security installed a 2.1 million dollar surveillance system on the bridge, with high definition cameras that capture the activity on the structure in crisp detail. This data is for security purposes, but it captured Daniel’s suicide. He is positively ID’ed climbing over the railing at 4:15 AM.
I don’t know if this video footage is accessible to the general public, but even if it is, I could never watch it. It doesn’t take bona fide documentation of Daniel’s death for me to have already witnessed it thousands of times in my mind’s eye. I keep seeing my beloved Doodles walking in the dark to the south tower, I keep feeling that morning’s cold rain pelting his face. I feel the slippery and frigid steel railing, the seconds of weightless terror, and the brutal smack of the bay.
I’ve seen these images from every possible angle, contortions my mind has always had a fondness for. And they’ve continuously circled through my brain, another neurological tendency, my capacity to replay and replay and replay. Each time I return to the bridge with Daniel, I am filled with panic, terror, and physical pain.
In the last month, Daniel has made his leap repeatedly, an internalized time loop I can’t shake loose. Sometimes during the day it dissipates, only to replay again and again as I drift to sleep, where I’m shocked awake by gelid water. And while I’ve become familiar with the sensations ~ the wet, cold, horrible journey into the next world ~ I can’t come to terms with the terrible loss of this lovely and vibrant human life. The experience of Daniel’s tragic passing is magnified through the lens of my mirror-touch synaesthesia, and I am desperately sad in an aching, intractable way.
The eternal return is a theory that the universe and all existence and energy have been recurring, and will continue to recur, in a self-similar form an infinite number of times across infinite time and space. I hope that in the coming months, my looping vision of Daniel’s last moments will be replaced by reminiscence of our friendship in its fullness and joy: blowing bubbles in the backyard of a Calistoga condo on a late May afternoon; riding a bicycle rickshaw through the Beijing hutongs, bundled against the brisk winter chill; taking ballet class in San Francisco’s Japantown with a patient teacher half our age, Daniel and I both about as graceful as stampeding cattle.
In just a few days, Daniel’s friends will gather to say our goodbyes. I’m confident we will have a warm and loving celebration of this singular man’s life. There’s certain to be plenty of positive mirror-sensory experiences for me with the all the warm hugs and comforting touches I will witness. Also, I think the memorial and its promise of closure will nudge me closer to some beautifully echoing recollections of my beloved Doodles. And, on Valentine’s Day, I will walk the Golden Gate with the Bridgewatch Angels, which will (hopefully) further derail my looping movie of the leap.
If the eternal return represents anything true and real, I hope you’ll come back to me, Daniel Scott Horton: maybe in this lifetime, perhaps in another, possibly in this world, or one yet to be discovered.
I await your return…
My “B” isn’t blue, nor is my “W“ white
I made a mistake at work this week, one that was bound to happen.
Among my new massage therapy clients in 2017 are two men who have the same first name, one that isn’t unusual, but is somewhat uncommon. For the sake of their privacy, let’s call them both Dennis. Not only do they have the same first name, they each have a “color” last name; one client is Dennis White, the other is Dennis Brown. Beyond these two similarities, they have nothing in common. They live in different cities, have very different musculoskeletal injuries, and look nothing alike.
Last week, Dennis Brown reached out to schedule an appointment. We found a time that fit his calendar, but unfortunately, I sent his confirmation email to Dennis White. This led to a series of somewhat funny exchanges between me and Mr. White, as he courteously told me that he had not booked an appointment with me, while I sent him screen captures of our text message exchange, certain that he had indeed requested an appointment. Finally, he asked me “do you have another client named Dennis White?” I don’t, but in an instant I realized my mistake: I’d confused my colors. Brown and White are almost the exact same shade of red.
Synaesthesia can create the strangest moments of dissonance in my day. Because I see all of my numbers and letters in color, I am at risk of making errors due to inattention to details that might be obvious to a person who does not have synaesthesia. For example, when I see the names Dennis Brown and Dennis White, they look very similar:
I’m not sure how this works for people without synaesthesia, but I assume that there’s enough difference between the colors of Brown and White that one would keep these two names distinct from each other, that the difference would take precedence. For my synaesthetic brain, it’s the likeness that dominates. The colors for these two names are just too similar; I knew I would one day conflate them.
While this confusion is an inconvenience at work, it can actually be a little dangerous at other times. Sometimes I confuse medications, even though I have a fairly good understanding of basic pharmacology. I have multiple family members who work in healthcare, including my mother who was a highly skilled nurse manager. I know the difference between my over-the-counter NSAIDS, and which to take for various conditions. But, Advil is a brownish tablet close in color to the letter “T”. I have on more than one occasion reached into the medicine cabinet for Tylenol, and pulled out Advil because I’m thinking of the brown word and matching it to the brown pill. On another occasion, I couldn’t remember a crucial medication my elderly dog was taking because I kept seeing the beautiful periwinkle blue color of the medication, but couldn’t match that color to a name. I don’t have any periwinkle letters, and I got so fixated on the color as a clue, I couldn’t get my brain to pull up the name for the drug, Kepra, which for me, is a sea-foam green.
I make judgement errors like this frequently. I’m grateful that, to date, none of them has been detrimental. Unfortunately, I believe my capacity for making mistakes based on color and context miscues is quite high. For this, I must be extra diligent, to check and re-check when I reach for medications for myself. Sometimes, I even say out loud what it is I’m looking for: Advil is a brown pill, Tylenol is a white tablet, the aspirin is in a green bottle.
One of the reasons I launched my Vox Synaesthetica blog was to reveal synaesthesia in its diverse manifestations, not just the flavored words or the rainbow-hued music, but the ways in which synaesthesia can be a bit ugly. Currently, cross-modal perception is having its moment in popular culture and synaesthesia is often presented as a beautiful or alluring trait. It certainly can be fascinating. But, sometimes, it’s just straight up confusing.
CC Hart with the ever-so-charming Todd Sucy. Photo by Marco Sanchez.
I have a love-hate relationship with Halloween. I love creating a spooky-beautiful ensemble and wandering through the city bedecked like a gothic vampire in a brocade gown, or a witch-princess covered in spiderwebs. And I adore the cooling weather, with its crisp aroma of woodsmoke and autumn leaves. I’m also fond of the detritus of a night spent trick-or-treating, the colored candy wrappers that dot the sidewalk like exotic paper flowers.
But, I hate the gory costumes and imagery that have dominated the holiday for decades. The sheer verisimilitude of some of them is a mirror-sensory synaesthete’s nightmare. Bloody zombies, and ghouls with their guts spilling forth don’t scare me, but they do send firey bolts of electricity down the backs of my legs. It’s an uncomfortable sensation and I do my best to avoid the experiences that are likely to trigger my mirror-sensory pain. I don’t watch horror films, I don’t read Stephen King, and I try to find Halloween events that glorify the “phantasmagorgeous” aesthetic I so enjoy.
I had the loveliest time last year at Paradox Media’s event “A Very Gorey Halloween”, which was very very Gorey, but not at all gory. Predicated on the art and illustration of Edward Gorey, the gathering includes some of the most imaginative and elegant costumes I’ve seen. Most are home-made and meticulously crafted, and not mere fancy dress. The guests really strive for that sweet spot between terrifying and enchanting. You can find a gallery of beautiful photographs from last year’s event on the website for photographer Marco Sanchez.
I’ve got the day off to dig though my closet and come up with attire befitting this years theme: “Neglected Murderesses”. I’m a bit worried that the costumes at “A Very Gorey Halloween” will be more bloody tonight than is typical; with murder in the title it’s a given. I guess a little mirror-sensory pain is a fair price for a night immersed in such creatively creepy revelry.
Do you feel what I feel?
I had an engaging conversation with Dr. Joel Salinas in November 2015 as he was diligently working on his lovely memoir Mirror Touch: Notes from a doctor who can feel your pain. We dialogued about the many facets of Mirror-Touch Synaesthesia and how we both recognize the impacts of MTS on our respective careers in healthcare. Joel is a practicing neurologist and researcher; I am a corrective soft-tissue therapist. Joel is the first person I’d ever conversed with who has MTS, and it was both reassuring and rather fascinating to learn how much our experiences overlap, and how they differ.
I’m an outlier in that I didn’t learn the term “synaesthesia” until I was in my early 40’s. I knew there was something a little different about my sensorium, and (almost 20 years ago) I did try to get some insight into my mirror-sensory pain. But that stream of inquiry with a physician who is a friend, while compassionate, went nowhere. A decade later when a massage client told me that there was a word for blended sensations (synaesthesia) and that there were multiple forms, I began delving into the interwebs for information on the synaesthetic experience.
It didn’t take long to find scientific research on mirror-touch phenomena; however, most of these descriptions of mirror-touch experiences didn’t (at first) seem like a match for me. For example, in the paper Explaining Mirror Touch Synesthesia by Michael Banissy and Jamie Ward (Cognitive Neuroscience 2015;6(2-3):118-33. doi: 10.1080/17588928.2015.1042444. Epub 2015 May 13) MTS is noted as the “conscious experience of tactile sensations induced by seeing someone else touched”. This description doesn’t include my most flagrant mirror-sensorial perception, which is pain shooting down my legs when I see other people’s wounds and injuries. But, also I tend to be quite literal in my thinking, and my mirror-touch sensations are greatest not when I see someone get touched by another person, but when I see inanimate objects brush against them.
I also failed to originally note my own very typical MTS because of the difference between exteroceptive sensation and proprioceptive sensation. I assumed that MTS phenomena….the conscious experience of tactile sensations induced by seeing someone else touched….should feel proprioceptive, that I should feel the sensation of pressure and firm contact. But, what I feel when I see another person get touched is exteroceptive…a gentle perception that tickles my skin. I do indeed feel exteroceptive perceptions when I see another person get touched; I also have Mirror-Touch exteroceptive sensations when I see another person get bumped or jostled. But, if the contact becomes more aggressive…for example, if I witness a person get body-slammed, then I don’t feel that ticklish exteroceptive sensation. Instead, I will feel what I call synaesthesia-for-pain (after the research of Bernadette Fitzgibbons and Melita Giummarra). That sensation, which feels like bolts of electricity coursing down the back of my legs, is my most flagrant mirror-sensory experience, and the aspect of my sensorium that launched me on a quest for understanding.
In the last few weeks, I’ve had two interviews with the BBC regarding Mirror-Touch Synaesthesia. In both dialogues, I pointed the reporter to the video for the song “Wonderful Life” by the musical artist Colin Vearncombe, who, in the 1980’s, went by the name “Black”. I get so much lovely mirror-proprioceptive feedback from the imagery in this video. The acrobat makes me feel like I am in the air turning and twisting, the boy who swings around the lifebuoy makes me feel like I am swinging around too, my legs flying in the air, my hands friction burned by the metal pole. But, there’s a more subtle image that that tickles my skin and gives me the exteroceptive mirror-sensory experience that I’ve long known, but didn’t realize is the epitome of MTS. At 1:35 minutes into the video, there is a woman sitting next to an elderly man. Strands of her long wavy hair are fluttering in the wind and brushing against her cheek. In the video, her hair is dangling on the right side of her face, yet I feel it on my left cheek, and on the left side of my head, as if I am looking into a mirror.
I’m delighted to see Mirror-Touch getting some traction in the synaesthesia research community, as I believe MTS can reveal much about human empathy. And, I’m over the moon that the upcoming IASAS Synaesthesia Symposium will host Dr. Joel Salinas, MD as our keynote speaker, and Michael Banissy, PhD as our keynote lecturer. While the IASAS symposium isn’t specifically focused on MTS, I think there will be plenty of reflecting on the “mirror” this coming October.
It’s a little bit wonderful to see my Great Big Story on MTS at the top of Google’s search results!
Just another fog-shrouded summer day in The Sunset.
Spring is yielding to summer here in California and there’s no surer sign of that transition in San Francisco than the ubiqutous fog bank that hangs over the Sunset District. In this neighborhood at the western edge of the city, summer days are gray and cool with tempertaures rarely breaking the mid 60’s. Boots and scarves are appropriate garb from late May through mid-September, and the smattering of brilliantly sunny days brings crowds down to Ocean Beach, a 3.5 mile strand along the lip of the chilly Pacific.
I have time units->color synaesthesia, which means I experience things like days of the week and months of the year in color. The summer months are especially pretty: lavender for June, a rich scarlet July, and olivine green for August.
These shades are not reflections of my lexeme->color synaesthesia; if this were the case, my summer months would look like this:
Along with the colors I see for the months of June, July, and August comes an overlay of hazy yellow. This sunny tint represents the concept of summer and season->color synaesthesia. It swirls around the months and stains every recollection of summers past in buttery hues. Rollerskating in dark indigo denim shorts on the last day of fourth grade, my bestie Julia at my side. Strolling the midway at the county fair with my boyfriend Mark, eating hot pink cotton candy from a paper cone. Placing white stephanotis in my sister Elizabeth’s hair at her 07-07-07 wedding. I see every nuance of color in these memories, yet each moment is also enveloped in a golden glimmer.
One of my favorite songs is Gershwin and Heyward’s “Summertime” from the opera Porgy and Bess. I love its conflation of gospel spiritual + jazz standard wrapped in the harmonic progression of a bluesy folk song. The lyrics are beautifully evocative of the slow pace of a summer’s day and the natural abundance of the warmer months.
Summertime, and the livin’ is easy
Fish are jumpin’ and the cotton is high
Oh, your daddy’s rich and your ma is good-lookin’
So hush little baby, Don’t you cry
One of these mornings you’re gonna rise up singing
And you’ll spread your wings and you’ll take to the sky
But ’til that morning, there ain’t nothin’ can harm you
With Daddy and Mammy standin’ by
None of these words hint at the color yellow; there are no yellow objects, no synonyms for yellow, and not even a mention of the sun. Still, “Summertime” is the yellowest song I know. I don’t think this synesthetic perception is solely about chromesthesia, the experience of sound triggering perceptions of color. Instead, it feels as if the season is so perfectly reflected by the lyrics and melody, that my brain bathes the tune in a golden light.
It’s still a few weeks to the solstice, the official start of summer. Although the days are appreciably longer in San Francisco, they’re also cold, overcast, and dove colored. I’ve got a row of parkas at the ready hanging near my front door, and seven versions of “Summertime” saved on my iPod via Spotify. When I walk down to the beach this evening, I’ll bring my earbuds, and let Ella Fitzgerald and the Gershwins give this steely day a sweet yellowy glow.
Ahhh! The yellowy glow of summer!
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.
Synaesthesia may be misconstrued, but it’s not a myth
Last year, I wrote a blog post titled Seven Misconceptions about Synaesthesia that explored common myths about the synaesthetic experience. That post was largely inspired by my opportunity to present at Trinity College, Dublin Ireland for the United Kingdom Synaesthesia Association. I met so many fellow synaesthetes at that symposium, and we shared similar stories regarding public misunderstandings about cross-modal perception. It was wonderfully collaborative to hear other synaesthetes share their thoughts. Common themes included the fact that synaesthesia isn’t always pretty, that it can include really unpleasant aspects, and that it’s a real and true form of human neurodiversity despite what the naysayers think.
My recent media appearances have me circling back to the ways in which synaesthesia is misconstrued. I am honored to have my Mirror-Touch Synesthesia revealed by the CNN property Great Big Story. They created a beautifully evocative video narrative to accompany my words about MTS, and the whole process from my initial interviews with producer Julianne Wilkinson, to recording with radio journalist Jessica Placzek, to first witnessing the completed story in a FiDi cafe on my iPhone was just dreamy. I am forever grateful for this opportunity. I’ve long had a secret crush on Great Big Story and the fact that they like me back is sweller than swell.
I hold an MFA in Writing from the University of San Francisco, and if my professors taught me anything, it’s don’t read the general comments on your published work. Perhaps my mother should have named me Pandora; I dropped right into the comment section on the Facebook posting for my Great Big Story not necessarily looking for praise or validation, but wondering what people are thinking when they learn more about synaesthesia. The vast majority of the comments were imbued with curiosity and delight in the spectrum of human experience. But, a few comments have left me perplexed, and serve as reflections on the challenges neurodiverse individuals face as they reveal their sensorium.
This is the comment that gave me the biggest WTF?
It seems the original poster here believes that if I just got enough mentoring, education, and training, my synaesthesia would disappear! The coolest part of this post is that on the same day I saw this comment, I read the academic paper by Jamie Ward, Julia Simner et al published in esteemed scientific journal Nature regarding atypical sensory sensitivity as a shared feature between synaesthesia and autism. My brain is strange, synaesthesia is real, it has features common to other neurological outliers, and one never needs a mentor to just “get over” their atypical sensory processing.
I also find myself bristling a bit at comments that suggest therapeutic bodywork treatments will help me control synaesthetic perception:
The first bodywork certificate I earned was in the Reiki tradition, and while over the years I have achieved the “master” level of attunement, I’m confident manual therapies aren’t the solution to my neurodivergent brain. As Popeye said, “I yam what I am”.
Perhaps my favorite comment focused on the concept that my Great Big Story was just an advertisement for my therapeutic massage practice:
Nice try! I was swamped with clients before this GBS video posted, and not a single person who has reached out for an appointment has told me they learned of my practice via CNN. Ultimately, if you research my interests, it’s pretty clear that I am an advocate for neurodiversity. That’s what really matters to me. And, I am forever grateful to Great Big Story for helping me advocate for synesthesia as a component of human neurodivergence.