I was in the best time in my life with a busy fulfilling career as a G.P., in love with a wonderful man, involved in philanthropy, and with great friends and a deep appreciation of the arts and sciences. I’d paid off my student loans and was beginning to travel: museums in France, castles in Italy, concerts in St. Petersburg, SCUBA diving around the world. Six months after we began dating, I knew my good man was the only man for me; I finally understood the songs and poems about epic love, and why like Uther Pendragon I would have sent my comrades into battle just to have my good man for a day. But I was having trouble with my hearing and vision. I’d seen my own GP who after a few tests told me it was ‘stress’. I was puzzled, since I’d been under tremendous stress all my student and working life: it’s just my state of being.
One day after doing paperwork in my private office, I stood up: and I was blind. With my faculties intact, I knew it wasn’t a stroke or a retinal detachment. I fumbled for my ‘phone and called a colleague, who raced out of her own clinic a few blocks over, and drove me to Emerg. I had hydrocephalus [increased cerebrospinal pressure]. As we discovered during a spinal tap and CT scan, the annoying sensation of water in my ear was actually the sound of my cerebrospinal fluid sluicing around at four times normal pressure, strangling my brain and nerves, blinding me, deafening me.
I was in surgical intensive care. I wasn’t responding to medication, so to keep the pressure down they had to keep tapping me, draining the fluid out of my spinal canal like a keg of beer, occasionally missing and driving the pointed steel tube directly into my sciatic nerve. Blind, with every noise drowned out by the ceaseless roar of the fluid, my face and limbs burning and tingling with a constant ‘hit funnybone’ dysthesia, doctors and nurses could only communicate with me by drawing letters on my back with their fingers.
I’d faced my own death twice before, once from hypothermia during a canoeing accident when my core temperature dropped to 32’C [according to the unforgettable rectal thermometer], once from an allergic reaction when they couldn’t find my blood pressure [I wanted to tell them I’d check it myself but I couldn’t lift my eyelids.] I know there is no god, and death holds no fears for me. But this wasn’t how I’d expected to go, under torture.
I discovered when you’re deaf and blind, you have no privacy. Colleagues had seen my grace under pressure in all sorts of extreme medical situations, but after coming into my hospital room and seeing me weeping since I was unable to detect their presence unless they touched my torso, I found out later that independently many had each ‘phoned my fiancé and told him he should come in.
I also found out later that he said simply, ‘I can’t do it.’ My good man never visited me in hospital. I never saw the only man I’ve ever loved again.
My mother was two hundred miles away, looking after my father who’d had a stroke. My brother and sister-in-law were wrapped up in their first pregnancy. My friend and colleague, a young widow who’d saved my brain if not my life, was strangely distant. None of them visited me in hospital. It was discovered my friend had terminal pancreatic cancer, and died before Christmas, leaving her three children.
My ophthalmologist was concerned about the length of time it was taking to get my vision back. During one visit, he pondered why my pressure was back up; he had examined me after I’d been weeping and wondering why my fiancé hadn’t come, begging, craving, pleading to feel his huge dear hand on my shaking shoulder, to let me know I wasn’t alone in this raging hell. My ophthalmologist wrote on my back: ‘Just don’t cry.’
Yeah, that’ll work.
Gradually the deafening noise eased a bit and permitted me to sleep. They found high doses of two medications which began to lower the pressure, but left me with beriberi ‘rice water’ stools and incontinence. I gained a bit of vision in one eye, although as if through a pie-shaped pane of smoky yellow glass: a bright blue sky behind a snowdrift looks like a narrow triangle of dark green blanket behind a piss-yellow snowcone.
Reading made me pass out even in bed, since moving my eyes increased the fluid pressure, and trying to follow a moving book gave me vertigo.
So, discharged from SICU, I’m back home. Alone. I’m deaf, almost blind, incontinent, my limbs burning with eternal hellfire, and the man I expected to spend the rest of my life with is gone. I flop on my bed and for a heartbeat, I think of ending it all. But I remind myself now that it’s starting to respond to treatment, it should be gone in a year or so. So I try to distract myself from my unending misery, but I can’t read, or hear talking books.
I can’t watch TV, but I realize I can hear some of the bass notes. Hmm… As Isaac Asimov said, the best words expressed during scientific discovery aren’t ‘Eureka!’, but rather ‘That’s funny…’
I can’t read my CD’s so I feel around in the back of a cupboard and pull out my dusty box of cassettes. In the bottom is what I’m seeking: low- frequency music, loud, with a beat: Rock/Metal/Punk from a previous decade. I trail my fingers over the walls to find the living room, grope for my old ear- covering headphones, and hit ‘play’. Henry Rollins’s voice pierces the sound of cerebrospinal fluid, and I lie supine on my carpet, blind eyes open to try to decrease the pressure on my optic nerves, tears rolling down my temples and pooling in my ears, thinking of how my dead friend had saved my life, of her orphans whom I’m in no shape to help, of the husband and children I’d never have, and envision my ex- the cop as I play ‘Liar’ over and over and over: “You think you’re gonna to live your life alone/In darkness and seclusion. Yeah, I know…Sucker. Sucker! Ohhh, SUCKER!” Ohhh, yeah!
Six weeks later, I’m cleared to go back to work. I tell my neurologist I’m concerned that I’m not capable of functioning safely as a GP with only partial vision in one eye, partial hearing in one ear. I can’t drive. I black out if I turn my head at a sound or bend over to tie my shoes; my vertigo is still so bad I fall off my stationary bike. He tells me to ‘suck it up,’ that he’s seen a lot worse, and refuses to sign any disability or insurance papers. Being self-employed, I still have to cover practice expenses despite having no income for two months. I pay to have my own IQ test: to my surprise and relief I’m still in MENSA. I go back to work, but for months I have to come home at lunch; my staff thinks it’s so I can have a brief nap. I come home at noon every day to cry for twenty minutes by the clock, then go back to the office.
My vision and hearing remain impaired for two years. I would work for ten hours and sleep for fourteen. Every day. For those two years, I would keep trying to taper off the meds, I would need less sleep, then I would lose the vision it had taken months to improve. Work. Sleep. My family gradually realized how ill I was. I explained it to my brother over half an hour of tears and diagrams, and he condensed it into, ‘So, what you’re telling me is your brain’s too big?’ Yep, that’s it.
Needless to say, I’m too damaged to date, let alone drive. I can’t hear or see performances, so I’ve given up the season’s tickets to the theatre, symphony and ballet I’ve had since undergrad. The prednisone makes me Cushingoid [a.k.a., fat] and the acetazolamide diuretic makes me incontinent and comatose for fourteen hours per day on a work day, and for 24 hours on a weekend, so I have to decrease my call hours, and my income. Yet who knew there’d be a sliver of silver lining; the diuretic engorges my G-spot, and I discover I can come spurting like a bull. Work. Come. Sleep. So lonely and alone I still only sleep on ‘my’ side of my bed.
Friends chivvy me into attending a Henry Rollins performance. I think it will be more wasted money as I sulk in my dark and roaring silence, and dream of bed. But I could actually see Hank’s pale face and arms in blinding contrast against his black T-shirt when lit by the Klieg lights of an old refurbished vaudeville theatre, and hear his beautiful baritone echoing as it ranged from cool to growl to rant, in a space made to project sound. The clouds around my senses part as I see him and hear him talk about the physical pleasures of travel, the culture, the music, buying silk suits in Thailand, masturbation crash helmets, a kid with a fatal brain tumor …
I, too, had almost died: critically, almost. Hank’s stories made me realize I had not been living for two years. I wanted to travel again. I wanted to find a good man. I wanted to make love again and throw away my masturbation crash helmet. I wanted to hear music again, dance, read. Live. A month later, I travelled to a tropical island with a good man, and my joy in life began to seep back in as the hydrocephalus had driven it out.
My senses improved, but more importantly I came to my senses. I have season’s tickets again. I’ve lost some friends who couldn’t handle my temporary disabilities, but gradually told my good friends what I experienced and they’ve been properly appalled: it’s good to rant to the right audience [everything but the G-spot stuff: TMI]. I lost the only man I’ll ever really love, but I tell my lovers about the G-spot stuff: good men love a challenge.
I can never SCUBA dive again, but I’ve snorkeled in the blue, blue waters of the Marquesas, Australia and Hawai’i. And I read and sprawl in my beautiful bed. I live, not just survive, as joys continue to seep back in and are beginning to spurt out.
And I would love to thank Hank, but being Canadian and feeling ugly, I was too embarrassed to tell him his music was fucking THERE for me when nothing else could reach me in my private hell of ultimate blackness, noise and pain, and his spoken words helped catalyze me back into the real world.
I could hear Hank when I could hear no other words or music. I could see Hank when I could see no other art or artist. He reminded me of how good my life was, and could, no, would be again.
I save lives for a living, but Hank saved my secular humanist soul: Orpheus and Dr. Eurydice, but with a happy ending.
So, Henry, if you’re reading this: thanks, man. And as with my profession, you saved another one [fist bump]: now just 5,999,999,999 to go: next!
Regards,
Doc M, M.D.
Age: “Younger than Hank”
Ottawa, Ontario, Canada
