It’s Shocking

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Original photograph by Valentina Sadiul, photo manipulation by CC Hart

Imagine for a moment that you have a friend or family member who is hospitalized. This person has been through quite an ordeal, but is recovering. You call the hospital to inquire about visiting hours, and the nurse informs you that guests are welcome from 8:00AM to 6:00PM. You make plans to visit your loved one for an hour or two.

When you get to the hospital, there’s a catch; the facility is conducting an experiment, and on your way in the door you will be fitted with a device, a weightless series of electrodes that will be attached to your low back, buttocks, and legs. You will then be randomly shocked as you walk through the corridors and into the wards. You will feel this pain shoot down your legs to your feet. The shocks will be of varying intensities; they won’t harm you but they will certainly hurt. You will not be able to decipher a clear and consistent pattern, as the electric shocks will be unpredictable in regard to timing and intensity. You may get zapped many times in a row, and you may have moments of reprieve, but you will most certainly get shocked periodically for the duration of your stay.

Would you become reluctant to see your friend? Make excuses for why you can’t visit? Avoid the hospital at any cost? Your reticence would be unsurprising; electric shock is a fantastic deterrent. It’s been used for decades as a means of aversion therapy, and according to some studies, it’s exceptionally effective. The basic concept is to pair an undesirable behavior, such as nail biting or skin picking, with a jolt of electricity. The unpleasant sensations from the shock rapidly become conflated with the nail biting and this undesired behavior will decrease in frequency or stop altogether.

But what happens when electric shocks are paired with a desired behavior, such as consoling a hospitalized friend? It’s a bit of a mindfuck (for lack of a better term) to get zapped by bolts of pain while in the midst of a goodwill mission, but that’s basically what happens to me. I have a deeply embedded synaesthetic perception tied to the visual landscape inside hospitals and clinics. Waves of electric pain course down my legs when I see sundry and random articles that are part of the medical environment; casts, crutches, splints, blood pressure cuffs, wheelchairs, bottles of medication, hypodermic needles, as well as waaaaay too many other objects to mention.

Although I’ve had these experiences my entire life, I’ve never become accustomed to the mirror-sensory overload that hospitals provide. And, while not exactly the same as getting shocked by electrodes, the pain does follow the route of my lumbar and sacral dermatomes, coursing a fiery path to my feet. It’s a whole lot of no fun, and serves as an inborn analogue to aversion therapy. I am averse to hospitals, even while I have big love for the medical professions and the awesome people who work in healthcare, including several members of my family.

Currently, I’m caught up in an ugly conundrum. One of my therapeutic massage clients is recovering from a serious surgery, and I’d like to pay her a visit. I can go to the hospital to see her and get shocked repeatedly, or I can avoid the hospital and spend every day feeling like a horrible person because I can’t get past my own pain long enough for a social call that might alleviate some of her loneliness. It’s worth noting that I’m not a “special snowflake” easily triggered by life’s daily difficulties, and lacking in grit. Sure, I’ve had a few meltdowns over San Francisco’s notorious parking situation, but I also earned a graduate degree and wrote a novel while working full time and volunteering at a women’s shelter in the skeezy part of The City. I (literally!) just blazed a narrow path to my own front door so that the homeless man sleeping on my doorstep could rest. I also gave him a pillow and blanket, because sometimes doing the right thing means relinquishing one’s comfort and judgement so that someone else has a moment of respite.

In so many ways I’m tenacious in my empathy and compassion. But when it comes to hospitals, I’m shockingly irresolute.

Monstrous

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“The artist must bow to the monster of his own imagination”-Richard Wright

According to the OED, my favorite writer’s resource, the word “monstrous” refers to not only a large, ugly, and imaginary creature, but to something which is extraordinary and/or unnatural. I’ve often felt my mirror-touch synaesthesia fits that second description; it’s outside of the ordinary to feel other people’s bodies as if they were one’s own, but it also seems unnatural to walk through this world vulnerable to so much idiosyncratic pain. It’s difficult enough in this life to bear one’s own sensations, but to also feel what one witnesses can be a little sliver of Hell, monstrous in both terms.

Like all synaesthesia, my mirror-touch has the defining features of the phenomenon itself: my experiences are conscious perceptual or percept-like in expression, induced by an attribute not typically associated with that conscious experience, and occurring automatically. And, similar to other mirror-touch synaesthetes, I experience various manifestations of mirror-sensory perception. I feel touch on my own body when I see other people receive touch or contact. I move like the bodies I see. I feel pain when I envision another person’s injuries.

Sometimes, I like to call these three forms of mirrored perception the “unholy trinity”. They are soon to be unleashed in a most wondrous way; my sweetheart bought tickets to the San Francisco Ballet’s production of Frankenstein. This is my birthday gift, and we will celebrate at the War Memorial Opera House, a name that launches a nettlesome wave of synaesthetic sensation, via the lurid red of the word “war” and the vivid images from Vietnam that saturated my early childhood.

Ballet has its own home in my heart, in part because I’ve studied on and off throughout the years, but also due to its accessibility as a synaesthetic trigger. When I see other people dance, I feel my own muscles fire in response. This mirror-proprioception is a frequent feature of mirror-sensory synesthesia. At fifty, I’m still the squirmy kid, it’s in me in a way that can’t be extracted, just as I can’t see the word ballet in any other color than scarlet. I’m fortunate to not only feel other people’s movement, but to also experience their vestibular responses. When I watch dancers spin, I get a giddy reaction fostered by the dizzying precision of their pirouettes.

What’s also in me is the inextricable electricity of synaesthesia-for-pain. When I see other people’s injuries, I feel as if I’ve been shocked with a cattle prod. And so Frankenstein presents a special case, an opportunity for abundant mirror-sensory stimulation. The online images of the costumes and props are enough to launch salvos of synaesthetic pain. But the exquisite movements of the dancer’s bodies frozen in still photographs makes me feel as if I am floating. And the physical contact of the company as they move through Mary Shelley’s Gothic classic is sure to enrapture me with its grace and dynamism.

I’m full of both delight and trepidation for my upcoming visit with the monster. Frankenstein is still a few weeks away, but I’ll be certain to post an edit when I meet the creature…

Needled

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H3N2 virus, my nemesis du jour

I’ve been sick with influenza this week. The flu fairy arrived Sunday night and brought me all her gifts: fever, body aches, a sore throat and that hideous orbital headache I always get with respiratory viruses. I’ve missed several days of work, and am a bit worried I passed this virus along to my clients and community. I’m also worried that I’ll be less than healthy next week when I travel east for the Women’s March on Washington.

The worst part of all of this is my awareness that my illness could likely have been prevented had I chosen innoculation. As a health care provider, flu vaccines are typically a given; when I worked in outpatient orthopaedic rehabilitation, they were mandated. But, I’m in private practice now, and although I recognize the arguments for vaccination, I’m averse to sharp, pointy things. I’m not needle phobic; instead of a generalized fear of hypodermic injections, I have a synesthetic response to medical implements that manifests as synesthesia-for-pain. I get bolts of pain down the back of my legs (and sometimes down my arms as well) when I see certain objects. The list is sundry and sometimes baffling: casts, crutches, broken glass, toothpicks, skewers, syringes, jagged metal, etc. So, it’s difficult for me to show up for a flu shot when the whole process hurts. I feel pain when I envision the needle, when I actually see the needle at the clinic (I try not to look), and when I receive the vaccine, not just at the site of injection, but in a dermatomal pattern, spiraling down my legs in flashes that feel as if I’m being shocked by electricity.

A journalist recently asked me if there were any drawbacks to my synesthesias. I offer my current illness as a relevant example of synesthesia at its worst. I didn’t get the flu shot because it hurts synesthetically to do so. And that pain comes repeatedly in the process of innocultaion, as if I’m getting throttled by a cattle prod. So, I put it off in hopes that I wouldn’t get sick. Unfortunately, H3N2 is agressively spreading through the San Francisco Bay Area. I don’t know which specific virus I have, but I do know over the last few days I’ve compromised my already reactive lungs, I’ve lost income, and I’ve certainly helped spread this nasty bug.

I’m a proponent of revealing the synesthetic experience from mutliple perspectives. While the media often reveals the curious, colorful, and fascinating attributes of synesthetes, I believe it’s equally valid to explore the ways in which synesthesia is an impediment. It certainly feels like a burden today as I pop ibuprofen and make yet another mug of hot tea to soothe my scratchy throat. 

There’s a Facebook page for synesthesia that marks the condition as a disease. I won’t give this page the courtesy of a link, as this categorization is an inaccurate portrayal of the condition. Synesthesia is not a disease, it’s a neurological phenomemon with various manifestations of interlinked sensation. As an advocate for neurodiversity, it’s really important to me that the public understands synesthesia is not an illness. But, I can say with certainty my synesthesia is complicit in my current sickness.

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

Touched

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Photo of Carolyn “CC” Hart, CMT by Annetta Kolzow

The trees are turning all yellowy-gold here in California, and I can’t help but think of my mother. Autumn was her favorite season, and tomorrow marks her 81st birthday. She’s been gone for almost twenty years, but her impact on my life lingers on, particularly in regard to my vocation.

My mother helped me get my license to practice therapeutic massage, and I’m forever indebted to her for her generosity and support. I’ve been a Certified Massage Therapist for more than two decades, a career that continues to spark my intellectual curiosity. I love the body sciences…anatomy and kinesiology and biomechanics…and I feel well suited to a job that helps other people feel their best. While most massage therapists wash out of the occupation before their seventh year in business, my manual therapy practice is thriving in its twenty-fourth year. For all of this, I’m thankful.

But I am most grateful for the strange conflation of the senses that is mirror-sensory synaesthesia. I was born this way, with my vision and my mirror neurons and my skin all entwined together. When I give people therapeutic massage, I feel as if I am the one getting a massage. When I work with tight muscles and my hands palpate their shape beneath the skin, my own muscles quiver and twitch in response to the knots and trigger points uncovered by my fingers. And, when I see my clients injuries…their bumps and bruises and cuts…I immediately feels shocks of pain akin to electricity that shoot down my dermatomes from my hips to my heels. This synaesthesia-for-pain facilitates my sense of empathy.

My grapheme-color synaesthesia is immensely helpful in my career as well. My dirty little secret is that I never write any of my appointments onto a calendar. Instead, they appear like a vibrantly colored hologram that surrounds my body. I know who is on my schedule on what day and time simply by the colored patterns created by that appointment when it was booked, whether in person, on the phone, or by email. And, that colored pattern occupies the three-dimensional space around my body, so it’s quite easy for me to find my upcoming appointments.

Friday October 7th, is the prettiest shade of pale ocher punctuated by a stripe of deep scarlet. I will think much of my mother tomorrow, and once again wonder if I got my synesthete genes from her.

 

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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