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.
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.
“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…
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.
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…
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.