Long December

christmas_late_60s

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.

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