Tooth and Nail

BetterTooth

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.

Mythbusting

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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?

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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:

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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:

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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.

Midnight Clear

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I’m curious about the potential for co-morbidities in synaesthetes. My interest in the psychological and neurological conditions that are concurrent with synaesthesia is rooted in my own family’s diffuse weirdness, and amplified by the fascinating line up at Trinity College Dublin, Ireland for UKSA2016. Duncan Carmichael PhD (University of Sussex) presented on “The Health of Synaesthetes: What conditions are co-morbid with synaesthesia?” Dr. Carmichael’s work intrigues me; I’m quite certain future research will reveal many neurological, psychological, and somatosensory differences between people who have synaesthesia, and those without this variant. Additionally, Carol Steen, MFA (Touro College) offered a brilliant glimpse into her experiences with hypnagogia via her collaborative paper with Noam Sagiv PhD (Centre for Cognition and Neuroimaging, Brunel University) titled “Synesthestic and Hypnagogic Imagery, a Comparison”. Accompanying Steen and Sagiv’s presentation were immaculately detailed illustrations of hypnagogic imagery created by Ms. Steen. Those images were wondrous in their symmetry and beauty.

Hypnagogia is particularly pertinent to me this evening, December 24th, 2016. I’ve had hypnagogic hallucinations throughout my life, but none of these episodes has been as protracted and as memorable as those from my early childhood. And, there is a specific sequence of hallucinatory images from Christmas Eve, 1971 that continues to awe me with its intersection between the dreamworld and reality.

I went to sleep that evening with my elder sister Elizabeth, the two of us sharing her double bed, both of us positively stoked at the thought of Santa Claus prowling through our home, depositing gifts under the noble fir, and stuffing our stockings with trinkets. We couldn’t stop talking, even though our parents had threatened to part us and send me back to the room I shared with my younger sibling. Eventually, Beth drifted off, as did I. But, at some point that night, I wakened, at least partially. I sat up and gazed out the window, where I envisioned a repeating sequence of imagery, Santa in his sleigh, pulled by galloping reindeer, who traipsed across my visual field from right to left. They looked somewhat like Indonesian shadow puppets, although the contrast was reversed, with my hallucinatory images appearing in bright white against a black background. Every few minutes, Santa and his sleigh were replaced by large blocks that moved from bottom to top and then back. I’d count them off..one, two three four five…and back again…five four three two one. Then, Santa would reappear with his reindeer team, moving across the neighbor’s rooftops in an illusory journey.

When I awoke on Christmas morning I was too excited to tell my mother and father what had transpired the night before. I thought that I’d perhaps seen the elusive St. Nick, although even at six, I recognized that the images I witnessed were not realistic. My visions had a phantasmagoric quality, a transparency and luminosity that stood in stark contrast to the stolid suburban landscape over which they were transposed. I decided to keep quiet, another hallmark of my young life, my tremendous reticence about revealing my disconcerting sensorium. I only recently shared this story with my older sister. Beth corroborated the layout of our early childhood home and a Christmas Eve spent huddled together in her bedroom awaiting a midnight visitation.

Forty-five years later I still have hypnagogic hallucinations, but they seem to be a bit quiescent at this time. When I do have them, they’re most likely to show as form constants, detailed geometric shapes that wake me from early sleep and scintillate in the air above my body. I do occasionally have auditory hypnagogia: ringing doorbells, a phantom voice calling my name, buzzing telephone notifications and alarms. I’ve never again envisioned Santa Claus and his reindeer coursing through a darkened sky. But, perhaps tonight…

Long December

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December 25th 1971, just moments before my sisters and I awakened…

My mother died 20 years ago this month, on Friday December 13th 1996 just a few minutes before midnight. I never told her about my mirror-sensory synaesthesias, which is perhaps my life’s foremost regret. But, like so many synaesthetes, I didn’t know there was a name for my acute sensitivity. In fact, I thought something must be terribly wrong with me; I was frightened and bewildered by my otherworldy sensations, and I became quite adept at keeping them hidden.

If there’s a second great regret stepping on the heels of the first, it is surely my infrequent visits to the hospital in the weeks leading up to my mother’s death. She was bedridden, aphasic, and fading quickly. My sisters both had young children and lived too far away to make regular visits to Merced. With my father already deceased, and no family on the west coast, the burden for my mother’s care and companionship fell singularly on my shoulders.

It seems terribly ironic that a woman whose career spanned 30 years and 3 different acute care facilities, an expert nurse capable of triaging an emergency room and managing the patient care for a large and underfunded county hospital should be left in the custody of someone so ill-suited. To be clear, I don’t hate the medical field, I’m not squeamish around blood or body fluids; to the contrary, the life sciences positively thrill me. My therapeutic massage clients know that I am a diehard anatomy geek who is passionate about kinesiology and human biomechanics and theories of spatial medicine.

But, I get electric bolts of sensation down the backs of my legs (following the path of the sacral dermatomes) when I see other people’s wounds or injuries. Similarly, I get flashing zaps of pain when I see certain objects: broken glass, nails, tacks, knives, hypodermic needles, casts, crutches. The list of offending objects is long and sundry, with at least a few items of little potential threat. Wooden skewers, for example. And toothpicks, which feel like a great big WTF??? It seems illogical to get painful sensory feedback from 5 centimetres of pointed wood, but there you have it. My sensorium confounds me and it has since my earliest memories.

Hospitals feel like a minefield. I can’t be anymore clear. When I’m in that type of environment, I get waves of synaesthetic pain, not because of what I think about the environment, or because hospitals feels scary or unfamiliar. It always comes back to that strange conflation of my skin, my vision and my mirror neurons, my own little unholy alliance. And so, my visits to my bedridden mother were infrequent. For this, I am sad beyond words.

Two decades ago I had no idea why my sensorial world was so harsh. I didn’t know the word synaesthesia, and I was unfamiliar with concepts of cross-modal perception. What I did know was that it was terribly hard to see my mom in her final days, despite my conscious awareness that she was likely experiencing her own physical pain, sadness, anxiety, and fear. I felt like a horrible daughter for yielding to my own hurt and confusion; sometimes I still do.

My favorite band at the time of my mother’s passing was Counting Crows. They had released an album earlier in 1996, Recovering the Satellites, which I played often as I drove my mother to her chemotherapy appointments. She liked the group and was a bit charmed that I had gone to college at UC Berkeley at the same time and in the same program as the band’s lead singer Adam Duritz. One of the last tracks on the disc is a song called “Long December”; the line that sticks in my mind is this:

The smell of hospitals in winter, 

and the feeling that its all a lot of oysters

but no pearls

It’s always a long December for me, wistful and melancholic. I miss my mother more than ever this year. I feel like my inability to be fully present for her was like a whole lot of oysters for both of us. But, twenty years later, learning about synaesthesia, identifying as neurodiverse, and coming to terms with my atypical sensorial world feels like a pearl.

Oranger

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Photograph by Valentina Sadiul

Fall is the harvest season in the northern hemisphere and November represents its apogee in the warmer climates of California. The rush to last harvest has commenced; yams are pulled from the earth and squashes are culled from withering vines while persimmons and mandarins still hang like fiery ornaments, awaiting the first frosts.

It’s no wonder that my grapheme-color synaesthesia has imbued this month with a burnished hue. I see the word “November” in a rich orange, the color of roasted pumpkins, and akin to the warm highlights on the ubiquitous liquidambar trees that adorn gardens in the greater Bay Area. The letter “N” has always been orange, as long as I can recollect. And, as a spatial-sequential and time-units synaesthete, it seems obvious to me that this eleventh month would sit off to my left, warming the waning year with its incendiary glow, one that fades to black as winter arrives.

I have a haphazard pattern of colored months. It’s rather common for grapheme-color synaesthetes to experience a given word as stained by its initial letter. For example, my first name Carolyn, is cerulean, which is also the color of the letter “C”. My last name Hart is chartreuse, as is the letter “H”. But, while the word “October” is white, I see the month of October in yellow. And the word “December” is purple, but the month is inky black.

Perhaps the congruence of my orange letter “N” and the even oranger word “November” is why I’m so fond of late autumn. But, I think those pumpkins, ready for roasting and folding into sweet and spicy pies have something to do with my delight….

Phantasmagorgeous

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Photograph by Valentina Sadiul; Headpiece by Tora Engle at Black Iris Creations

Halloween is just a few weeks away and I am planning to follow through with my commitment to the phantasmagorgeous. While I don’t yet have a costume put together, I do have some concepts predicated on the intersection of allure and fear. I also have plans to attend gatherings in San Francisco that offer a platform for expressing the conflation of the beautiful and the spooky. The Vau de Vire Society will present Phantasm, which offers “a midway of careening colors and karni oddities”, while on the same evening the intrepid folks who create the Edwardian Ball will host their own version of pretty terror, The Haunted Hourglass. I’ll most likely attend Paul Nathan’s event at the creepy and mysterious Great Star Theater. And, on November 2nd, I will once again build my fireplace mantel offrenda, then haunt the streets of The Mission bedecked in calavera make up.

For more than a decade I’ve been disturbed by the increasingly gruesome imagery that has overtaken celebrations on October 31st. I’m a mirror-touch synaesthete, and I feel pain in my own body when I see wounds on another person’s body. It doesn’t matter if this blood and carnage and ruptured flesh is real or imagined; I experience painful sensations the nanosecond my brain perceives “hurt”. My mirror-sensory synaesthesias are so flagrant, I consider myself to be “built for hurt”.  But, the lovely underbelly of this reactivity is my sensitivity to sumptuous fabrics and aquarelle colors. The sight of burgundy silk chiffon makes my fingers warm; the orange petals of a late autumn chrysanthemum are as threatening as teeth. Put them together in a strange and fascinating headpiece and I’m captivated.

I’m building my All Hallows Eve ensemble on a framework of texture, color, and transparency, a formula that’s hardly novel to fear mongers. Guillermo del Toro combines these elements masterfully in “Crimson Peak”, a haunting, ethereal ghost story. Similar images are evoked in Edgar Allen Poe’s poem Annabel Lee and the haute couture of Thierry Mugler. I’ve plenty of experts to consider as I build my own bewitching disguise. And as always, I’ll let go of the gory and elevate the eerily pretty.

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Photograph by Valentina Sadiul

Introducing IASAS

 

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Our lovely IASAS logo, created by Christina Eppleston.

My inquiry into synesthesia has connected me with some truly intriguing people; I can’t think of another neurological phenomenon that fosters such an odd and compelling community. Through a decade spent exploring my own synesthetic perceptions, I’ve met neuroscientists of all stripes, from developmental neurobiologists studying the genetic underpinnings of cross-modal processing to anthropological psycholinguists documenting the global frequency of colored graphemes. I’ve met artists who paint vivid soundscapes on canvas that depict their own chromesthesia, and I’ve re-read Nabokov, looking for clues to the tints of his synesthetic alphabet. The Synesthesia List has introduced me to a teenager in Asia who hears shapes and a senior in America who tastes words. I’m beyond honored to be part of this wonderfully inclusive group who reveal the experience of synaesthesia through their personal stories, creative endeavors, and research.

Writing my Vox Synaesthetica blog has fostered connections with several individuals who are committed to developing a global collective focused on cultivating interest, understanding, and acceptance of synaesthesia as an expression of human neurodiversity. I’m delighted to serve as secretary of the board for this nascent organization. The past few weeks have been a flurry of activity as I help to develop the International Association of Synaesthetes, Artists, and Scientists into a bona fide 501(c) 3 nonprofit corporation. I’ve set aside some of my own creative writing projects in order to draft our nonprofit documents, and I’ve left my social media mostly quiescent while I’ve constructed an electronic presence for IASAS. While we aren’t yet ready to bring members into the International Association of Synaesthetes, Artists and Scientists, our board is actively building what promises to be a diverse and dynamic community.

I believe IASAS will encourage collaboration among synaesthetes, (people who have synaesthesia), the artists who create from their own synaesthetic perceptions, and the scientists who study cross-modal processing. But I’m equally curious about the fascinating and varied permutations this organization nurtures: scientists who have synaesthesia, artists who aren’t synaesthetic but who create works that promote conflated sensations in their audience, synaesthetes who aren’t scientists but who participate as subjects in research studies. IASAS represents tremendous possibilities for cooperation and unity; I look forward to my opportunity to both witness and participate in the rise of an unprecedented alliance.

Pretty Ugly

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Pantone 448C, aka “opaque couché”.

Is Pantone 448C the world’s ugliest color? Many people think so, including the 1000 smokers who participated in an Australian research and marketing project aimed at creating an unappealing but compulsory plain package for all cigarettes sold down under. I picked up the story of Pantone 448C, aka “opaque couché”, as reported by UK newspaper The Guardian. But, I’ve long known this color as a component of my synesthesia. And while I agree that it’s not a particularly alluring color, I’m convinced opaque couché helped me learn to read and write.

My grapheme->color synesthesia gives each of my letters and numbers a distinct, unique-to-me color. My “A” is a deep aquamarine blue, my “B” a scarlet pink, etc. Like many synesthetes, the first letter of a word colors the rest of that word. For example, the word “book” is scarlet-pinkish-red. Although its comprised of a scarlet  “B”, two white “O”s and a seafoam green “K”, when I see the whole word, it appears to me in scarlet.

My letter “T” is a light warm brown, and my letter “H” is a shade of green that leans toward chartreuse. But something funny happens when they are side-by-side in a word like ‘though” or “thought”. When I see T and H next to each other, they both turn a weird brownish-greenish-grey, almost the exact shade of Pantone 448C. And while, I find the color kind of ugly, it begs me to notice it. That odd color really stands out in a way that made it quite simple for me to differentiate between words that are easily confused by early readers, words such as ”tank” and “thank”, or the words “though”, “thought”, and “through”.

A few weeks ago, I wrote about the misconceptions that accompany public perceptions of synesthesia. One of those misconceptions is the idea that synesthetes experience a world of exquisite rainbow hues. In truth, many people with grapheme->color synesthesia have really hideous colors that inform their synesthetic perception. Though I find Pantone 448C to be pretty ugly, I like it, through and through…

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Built for Hurt

 

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I’m delighted to have my essay “Built for Hurt” published in the inaugural issue of qualia, an “experimental journal dedicated to creative and critical thinking at the intersection of the arts, humanities, and medical sciences. With a focus on lived experiences, embodied encounters, phenomenological investigations and unusual perspectives, qualia publishes personal, theoretical, scientific, sonic, and visual responses to particular themes: this inaugaral issue of qualia explores the theme of pain.”

Qualia is edited by Dr. Elinor Cleghorn, who has conducted research on the scholarly and artistic implications of mirror-touch synaesthesia at Oxford’s Ruskin School of Art. I was fortunate to participate in some of Dr. Cleghorn’s inquiry into experiences of mirror-sensory synaesthesias, and I’m honored that she encouraged me to pen an essay about my encounters with synesthetic pain for the first issue of qualia.

I am indeed built for a certain type of hurt. My synaesthesia-for-pain is triggered every single day on multiple occasions, often by the most mundane objects. But sometimes my mirror-touch synaesthesia and synesthesia-for-pain go into overdrive; one such example of this sensory overload was witnessing (via electronic media) the wreck of the Costa Concordia. My essay Built for Hurt explores this tragedy from a synesthetic perspective. I’m grateful for the opportunity to share my essay with you via qualia journal.

7 Misconceptions About Synesthesia

 

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Chromesthesia is one of more than 80 forms of synesthesia.

I was on Pintrest this morning, working on my Synaesthetic Alphabet Project, when I kept encountering the same pin: “I see colors when I hear your voice”. There are many different versions of this meme, most featuring rainbow-hued abstract art. While I recognize that the popularity of this pin is likely due to its romantic connotations, I think the meme perpetuates some myths about synesthetes and synesthesia:

  1. All people with synesthesia experience colored sound:  Chromesthesia, or sound-to-color synesthesia, is indeed one of the more common forms of conflated senses. But not every synesthete has chromesthesia. And even among people who do have sound-to-color synesthesia, their experiences are unique. I’ve really enjoyed looking at the sound-to-color paintings of artist and synesthete Melissa McCracken, who appears to have much more blue in her colored hearing than I have. My own chromesthesia tends toward faint yellows, pinks and greens.
  2. Synesthesia is a beautiful experience: While many synesthetes do enjoy their synesthesia, it isn’t always pleasant. Earlier this year, the NPR program Invisbilia profiled a woman whose mirror-touch synesthesia made it impossible for her to be in the presence of people who were eating, as it would make her choke and gag. My own mirror-touch includes synesthesia-for-pain. And some grapheme-color synesthetes dislike many of the hues in which they see their letters and numbers. Syn isn’t always pretty.
  3. Synesthesia is a disease: It’s a neurological trait, not an illness.
  4. Synesthesia is really rare: It’s actually somewhat common, affecting approximately 4% of the global population.
  5. Synesthesia isn’t real: At the dawn of modern psychology, interest in the study of synesthesia was quite high, with some researchers gathering extensive narratives of synesthetic experiences. Unfortunately, there were no means to scientifically validate these experiences, and research into synesthesia declined for decades. With the development of functional magnetic resonance imaging, synesthesia research has increased dramatically. fMRI studies are documenting how very real synesthesia is.
  6. There are no tests that prove synesthesia: see above. Also, the Synesthesia Battery is an online test developed by Dr. David Eagleman. While it only tests for a few different forms of synesthesia, it’s considered to be quite accurate.
  7. Synesthesia is like tripping on drugs 24/7: I’m not the best person to address this fallacy, with my very limited encounters with psychedelics. But I can speak for the experience of synesthesia, and say that my conflated senses are so tightly interwoven into my perception of the world, it hardly feels “trippy”. It’s not like I walk around all day in the equivalent of a hallucinatory stupor. I believe this is true for other synesthetes as well. Even if our synesthesia is sometimes confusing, alluring, or frightening, it’s not the same as tripping on LSD or mescaline.

I’ll likely add to this list as I encounter additional myths about synesthesia. If you’re a synesthete who’s encountered misconceptions about your experiences, I’d love to hear about it. Please leave a comment below.