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September 1993
Clyde passed away suddenly in Vancouver, B.C. Survived by his partner, Edward Hop; his mother; brothers and sisters and many friends and relatives. Donations may be made to A Loving Spoonful, 1300 Richards St., Vancouver, B.C., V6B 3G6.1
RegGiles writes: Below you will find a group of stories written by Clyde and published in BCPWA Magazine after his death. Although they were written in Toronto and Vancouver, these documents deserve a spot here as it drives home to all people, the trauma of HIV/AIDS and how it affects each of us. These are his thoughts and feelings.
Some are dated and some not.
Wednesday, July 23, 1997
Snout raised to the heavens, tongue hanging, saliva flows like the twin cascades of Niagara; our pooch faces anticipation and the crush of unfulfilled dreams twice daily. It's the drift of chicken on spit not so gently driven across the street from the new and odor "improved" grocery. Twice daily, mid-morning and just before he has to face another bowl of that damn dry kibbel, the taps run as the birds chair.
But this is not a tale of dreams spurned, there has been a new hope and meeting of basic needs for our proud canine. Patient and knowing, my scavenger feigns disinterest at the edge of the great kitchen/dining room divide: a panther poised to pounce on unsuspecting prey. Spaghetti sauce from four feet up creates a splash every bit as spectacular as the tobacco fireworks finale! How can that tongue reach so high?
As the walls are licked clean (we call it first rinse) concern, pain and consternation emanate my way as the latest Picasso is brushed from the walls. Twin blue beacons beam the feeling from the couch. The first few shows were loudly 'panned' by the crowd. As the play continues its run appreciation of the humour glimmers through the audience at my side-dish dinner theatre.
Neuropathy is the benefactor of our fur-clad kitchen vulture. Feeding the dog leftovers has new meaning in our house. While now like an old flashcard animation, the rythmic clack of the cards as the action flies past was quite disturbing as I watched my hands: reach, grab, lift and lose those first few pots and plates. Dinner has become more interesting, last minute substitutions leaving many a guest with tested palate.
What started as a tingle in my toes now ranges over my right side. Numbness dwells in my right foot, all attempts to foretell its raids on my hands and legs only the pile of losing lottery tickets rivals. The tingle to torture ranges from sublime to the jolt of hot fiypan: where is that oven-mitt?
Medications enhance the duration and variety of sensation. Chocolate cake sends a thrum through nerve endings from finger to toe tips. Like the skytrain at rush hour; my computer overloads without notice and the crowds wait while the glitch passes. Pardon the delays, the fit is only temporary .
Lips that......
The soft brush of pouting lips fire pin-pricks through my being as we part for another day's toil at the jobs that keep the home fires burning. Common scene in any coupled household, an everyday happening. fu our house, the food of fond memories only.
Having endured the vagaries of herpes in all its known forms for what seems a lifetime, my first loss of humanity was struck by this villain. Papilloma, sounds like a horse from a fifties TV western, really nothing more than a wart.
First sighting almost a decade ago, small spot on the inner lower lip. As the T4s slip the spot spreads, inching across the crevices of my mouth like Hannibal with his elephants over the Himalayas. They say you lose language skills when you don't use them, someday I hope to find out. Yes, the French kiss was gone... adieu!
Having dealt with the less obtrusive but equally disturbing rectal variety of this invader for five years in an earlier existence, I knew the war would not be over by Christmas. This road leads through repeated laser surgery, liquid nitrogen, electric needles, assorted topicals and finally the big guns: the pseudo-chemos injected twice weekly into the mouth. Ugh, what a taste !
Willing to do almost anything for that special kiss I opt for the lot over the five year plan - socialist medicine.
Not content to leave well enough alone, I enlist the help of every alternate source known or unknown. An assortment of herbs and tinctures, corrosive mineral preparations. "What is this cooking on the stove, I'm won't eat any of this" an oft heard phrase as I began the poultice period. I've learned how to make my own herbal tinctures from scratch and even played cat burglar after spotting that one rarely sold herb in someone's front garden. I've turned my dog criminal: he was my lookout!
My teeth are almost back to normal colour after the collodial silver but my partial has lost most of its plastic from the home-made Houseleek tincture. They persist.
The kiss in any form now a ghost in my mind we brush cheeks each morning and my lips throb in a steady hum. Neuropathy or hunger, who knows?
A battle not won, a kiss to come, I scour the latest in both treatment worlds. Leery of most other pharmaceuticals, my Achilles heal is truly stuck on this mouth.
I may never feel the soft caress or the sweet tortured tug of tongue on tongue again but I'll never give this one up.
Lips that never......
Wednesday, July 23, 1997
In fourteen years with AIDS one would expect to have seen it all: the pain, rejection, emotional and physical stresses: the profound loss as another compatriate sinks - graceful, the pain easing as the great beyond looms closer. Life however, constantly perplexes.
Last fall Ev, a friend of decades, now in a far off city, updates on his bar buddy's latest setback. bedridden and riddled with a multitude of ills, Christmas presents definitely on hold! Pain resonates through the phone, flashbacks to last Christmas when a workmate struggled to see one last Santa. Will Santa go down the crematorium flue? Time and phonecalls pass, "no I haven't been to see him" echoes over the line. The week before the turkey was due he passed, another stocking off the fireplace. And "NO, I can't face the memorial." What to say, how does one express empathy, loss, shock and disgust all in one sentence?
Bland sympathy proves easiest as I hit the Intercom button instead of Off on the phone. The screech of the beeper shakes me loose, this requires digestion over time.
Several loops later on my rollercoaster ride comes a call from a soulmate's partner, "Ms DeHaviland". Things haven't been pretty. Different though our affiictions had proved, we've paced each other close on this road. Both partnered almost fourteen years, he had been my prowl partner and main rival the night my tall, lanky and maned blond entered my sights and slew my heart.
Lymphoma of the stomach. Casey House likely and the fear of finality. "Miss DeHaviland", a tag hated but conjuring the poise and pluck his spirit he embodies to me, is having a rough time with the family. Friends (?) he expected to stick have come unglued and mumble polite apologies to his answer-machine.
Time and calls fuel our cross country pshycic links, beaming endurance. I cajole, prod and coo in an effort to keep us all ready: with hope or....
The urge to commune with this link in my chain of life overshadows earlier resolve not to subject myself to the rigors of travel. A break from chemo is also very inviting. Where to stay proves a minefield. Family, which of the three friends? Fences always needing to be straddled, I opt for two nights with Ev, the friend who couldn't bear the pain and two with "Miss DeHaviland." Short visit. When your "best by" date is nigh you don't stay out of the fridge long!
No, Ev won't go to Casey House. I joke that the purpose of my visit is to see who scares who more - I still have hair, our friend radiated bald and with a Captain Kid eyepatch. Nervous laughter wells from the receiver and I lunge: "If you can't handle this, how are you going to deal with me, DEAR ? I scare myself in the mirror."
"You 're my best friend, I have to handle you!" Like the Pacific plate grating the Rockies, ridges ripple in mini tsunamis across my temple as the pressure builds. I stumble: "Isn't that comforting."
Reflection past, subplots anticipated and trip booked, I marvel at Ev's fears' he's HIV+ and frightened for himself. Having surrendered to the fear not so gracefully myself, my route is clear: steady and in everyone's face, close up.
The peace and capacity for endurance my surrender brought me will some day meet Ev. Fear is what you turn it into - best only when well shaken. His pains will add to my load, a price we'll both have to learn to bear and turn to a power to sustain.
The tingle of elapsed ecstasy still in the back of my mind, I head off from an experience no longer fun and fulfilling. For all my adult years I have been largely blessed by a succession of overly- talented haircutters -- nay, head practitioners seems more apt. The experience of the pumped chair from a true professional is sublime.
The tug of the shampooed nails and the caress of conditioning fingertips peppering my scalp. The vigorous waking of drying actions from a giving but determined grasp. Gentle gestures sweeping me into a mirrored den where the hums and clicks of well trained razors and polished scissors bring the anticipation of things to come.
The cut when executed by one such as I've been blessed brings the back and forth parrying of scissor and razor; the pluck and the gentle buzz against nerve endings. Determined demands to shift this way or that. All in the quest for that moment when the veil of my castoff locks is shaken free and the powder puff clears the full view of what the time has brought to my crown.
The afterglow carries me up the increasingly hard to walk block home from the shop. Each store window on the way allows checking if the sensory experience matches the sight.
Alas, such delights are not for me anymore. Now I live in the world of the untouchable, hair to be clipped by attachments. If I last, perhaps the search will yield such a treasure. My last such has betrayed me and I can't blame her, only mourn my loss.
My last cut from my "God of the Scissors" lies months in the recess of my mind. Much like my neck, swept by the puff brush but with that one hair remaining to grate against the collar. The shrinking of my frame from repeated ravages of the AIDS and the blot of KS lesions on neck and face rendered my goddess unable to touch one such as I. It was a spell broken, a moment I'll take with me.
The distance as the cut started hung in the air like a cloud of hairspray with stale cigarette smoke. Then it came: "Can you hold back your ears while I trim?" Dazed afterwards, I stumbled home to query my partner on such a happening.
"Can you remember your last cut?" He resolved to note things next time. The debate in my mind proven when the next week he partook of the same cutter and was rewarded with the usual experience - full touch.
An ache crept up my side as the sad truth sunk in. Another step closer. Worse, I could understand how she felt. Small consolation that.
I will search my remaining days for a more hardened pro to tingle my scalp and soul, but this scar will etch its lasting impression on my now untouchable scalp. Sorrow for my loss and hers.
July 23, 1997 10:56:29 PM
Most common of delights us folks with AIDS endure also ranks as the least discussed. A serious subject, an issue of dignity and an ominous foe if you fail to control it! To me it conjures the view of some early crooner pretending at rock, chanting "Mona Lisa, Mona Lisa" on the radio: A friend with a memory (and much more time on this planet!) tells me it's Nat Cole. The tune ricochets through me and surfaces again as "Dia rhea, Dia rhea" and the dreamy fog it raises stirs a muffed chuckle.
The most important daily battle, the fight to remain 'regular' involves a host of dietary supplements and great restraint at the bakery window. Soakings in anti-parasitics, liver cleanses and kidney rinses: like running a hand laundry. Light on the starch, it ferments and adds sour gas before the gusher at the well-head!
A trip out while in the grips of 'the relay runs' requires much forethought: bus stops to available washrooms - Denman Mall definitely out; give me a butt plug before a stall with no doors! Last minute stop at the door: cookie for the guard dog, mental signal to bowels - is it safe to dash to the bus stop?
Two stops on and off the bus, half the list met, I wait for the next bus in my loop around the neighborhood. First of those rumblings from the deep, should the next stop be skipped in a dash to make to the throne I know so well, or...
Craving veggie tempura since the chemo, I chance the last stop. Seven minutes later, tempura steaming from the bag, the knot in my guts pulls tight and I lean into the side of the shelter. Nothing close enough, bus pulling up I walk clenched to the seat furthest from anyone: only four stops! Home in sight as we crest the hill, the bus bounces over a bump. The final blow, battle lost Queasy and sheepish I waddle through the door doffing outerwear and tempura. A quick sniff sends the dog sneezing for fresher fields. Clothes off in the shower and rinsed by the hot spray a sigh of relief and a small victory: this pair of shorts made it home. Many a brave pair abandoned on the battlefield, disposed when the usual doggie bag and twist tie were in the other coat.
The tempura' s not soggy yet; I utter a silent blessing to the inventor of styrofoam and chopstick on.
In the rearview mirror some of my worst moments seem comical, the pain of the moment past. Properly packaged for friends I get the usual laughs and the inevitable: perhaps its time for Depends. A flash in my mind: lopsided toupee and in a leisure suit on a golf course. The voice over softly extols the virtues of the bag chaffing my waist. Shivers up the spine, I remember: they mean well.
Donning of the diaper is a daunting prospect, more rockslide than milestone: it can crush you.
Morning dawns with something solid. Core stabilized, warp engines back on line, saved from the final frontier till the next episode.
Two weeks down with a lung infection and another five pounds lighter, sanity and health stabilize sufficiently to explore the world beyond the patio again. Lunch with a friend, low impact activity .
The three blocks up the hill loom like Mt. Everest. I edge onto the bench to await the bus. Wooden slats dig into bones as I settle in a shifting dance. Ahh, that one spot of flesh cushioned enough to withstand the crush of wood on bone. As if I'd lit the proverbial cigarette, the bus pulls up and I pull myself up to meet the four steps at the end of the line.
Beside me in the line stands a proud yet frail, slightly stooped blonde figure, wearing the linen coat that seems almost the uniform for such folk, with matching bag. A senior, close to 70 I'd say. We reach the doors together and as I turn to usher her ahead a soft touch passes over my shoulder. She gestures her hand for me to go first and holds her arm in readiness as I attempt the first step. Thanking her I make all four pulling up on the rail. Mmm, another milestone I think as I am shot into my seat by the lurch of the bus pulling away.
Later in the restaurant I replay the scene marveling at this turning point in life. My friend, ever practical only asks: "when will you give up the dignity pretense and start carrying a cushion?" It seems that I've become better at expressing the discomforts life brings me than the wonder these turns also leave.
The ride home a treat indeed! A new diesel complete with cushioned seats. Cushion? Well I'm still looking. I have two blow-ups purchased during an earlier bout when standing under a shower proved more taxing than hoisting out of the tub. Blow-up cushions in a restaurant? I am a fag and must consider the implications of such a social faux-pas.
I search for an eight inch oval flat pad, something to tuck in the bottom of the backsack(purse) which will be distinctive enough to offset its true intentions. Our pooch has the perfect rainbow rug but even my laundry skills can 't shrink it by 75%. If I must stand out, it must be at an angle
Yes, even as life changes one's focus, standards must be set and attained. A matter of choke, choke: pride.
A scared rabbit cornered by crowds of Doctors and option-weighing family and friends, I shuffle from the office having made the only decision offering time: chemotherapy and maybe even anti- virals. Thirteen years of natural healing needing a boost, tears usher in the future.
Mom came for Christmas and landed in my decline. She runs interference with the advice panel and the partner clings tight. Taking longer to get to the door than campus roomie John used to in the 70s for a night at the Disco, we lurch towards the taxi. Three hours later, flushed by the drugs sleep takes me for twelve hours.
Coughing and gags greet the morning and run through the day. Food no longer tastes right- salt shakers running low?
Weeks and drug names fade but my the comeback is there, you can feel it. The heaviness in the lungs is ever present, but not as insistent. Food still troubling.
Week seven and the X-rays look promising. The ride from the sessions seems to have settled: well, become manageable. Three nights from a speed trip with four hours sleep, great for the light housework I can once again handle. Cooking two sets of meals as I assert myself in the kitchen. One for the man, one for the altered taste.
Day four brings the sleep I've missed and even the bitchiness ebbs. Two almost normal (pre-war?) days and it's back to the hospital for another round, the slow windup, the pump of the hypos and I'm flung out the slingshot again.
Week twelve and more X-rays. Mixed bag, reduction in one lung slight growth in the other - four more weeks of chemo.
Pounds on and with the renewed ability to make it to Starbucks and yes more X-rays. Let's try six weeks off and see what happens. Sounds scientific!
My distrust in the medical system still shrill but with greater respect for its artists. More chemo underway and yes, a cocktail but still not totally theirs. Two parts pharmaceutical, one part eye of newt (but from a respected source.) The adjustments continue but hey: so do I.
The walk from the beach getting harder each day, chemo for another twelve weeks decreed. Time to get out the side- effects primer and brush up.
Five AM, the morn after, week five: the "knock you dead " for twelve hours pill lasts four. Fortified by protein mixes and rinsed nearly afresh in the shower, I gather doggie-doo bags for the trip to the beach. Perfect morning: drizzle saved for the commuters two hours later, dark clouds keep the tourists tucked behind hotel windows.
We weave the three blocks to the beach missing not one tree. Sniff and leg lift. The air thickens pressing like a soggy bath towel as the beach stretches into view. The leash strains as I'm dragged down the last hill towards foamy surf. Whiskers sense the froth; the tug becomes frantic.
"Sit! Just a moment." as I scan for small ones or Park Patrol. Safe. I slip off the leash and he's in the waves before the leash is coiled. Mesmerized by the rush of the surf he still turns to check every few seconds, mindful always of the herd's safety. The perfect nurse, bark worse than any bite.
The plus of chemo: the return of early morning commune with sea, and sheepdog
Shaking the sand over me, we corner the hill on the way home. Tree sniff stops beckon. As the incline increases I welcome them. The walk light chirps at the last corner and brown eyes peer up as I lean into the light pole as it flashes red. Next light, I gasp, collecting breath and strength for the half block left.
X-rays and things look better: two more weeks.
Last week and consults to plot the next move: long awaited and improved (more and better side- effects?), the study drug is available. Psst, sailor want to try this on for size? Ten session run, every second week. I can hardly wait.
Two and a half weeks off. Will I be able to find my sweet tooth before the taste twister chemo returns? My mind craves Banana Creme but so far my gag reflex resists. I'll add a fork to the backpack in hopes the time will come.
Tags: Died1997Category HealthCategory NeedsBioCategory