by Tilda Shalof
“My accident happened a year and a half ago. It was a warm summer evening. I’d been playing music, chillin’ with friends, had a couple of drinks. I went to take a dip in the pool, but slipped off the ladder and fell on my head. In an instant, I was paralyzed. I lay there at the bottom, waiting for someone to save me. They did. Later, I wished they hadn’t.”
Gaétan’s injury was high up on his cervical spinal cord. One vertebra higher and he’d be on a ventilator permanently, completely unable to breathe for himself, like he can now.
“Before my accident, I’d been into running and working out. I was in the best shape of my life. Now look at me.” He looks down at his pale, soft body. There is no muscle tone in his legs, arms, or chest, and considerable atrophy. What a drastic change from the rugged face, the chiselled image of “before.”
“I was so buff. Bodybuilding was my obsession. I played hockey, rode a motorcycle. I played guitar in a rock band. Now I can only play the harmonica.”
“What was it like at first? Do you remember the hospital?”
“The ICU? It was great. Getting off of the ventilator was a wonderful feeling. My first food was a slice of watermelon and nothing ever tasted so delicious. I was confident I’d make a full recovery. I told myself that I was going to be the one to beat the odds. My mind was strong and I was in great shape, with huge muscle mass and peak cardiovascular stamina. To be completely paralyzed? It was unthinkable, totally unacceptable to me.”
“What was rehab like?”
“I was very motivated and worked hard. It was a hopeful time – mostly. There was one guy there who kept trying to encourage me. ‘I get the nurses to toss me Timbits,’ he’d say. ‘Yesterday I got three out of six in my mouth.’ ‘Dude, that’s supposed to cheer me up?’ ‘Don’t worry,’ he said. ‘I used to buy a dozen and get three in my mouth. Now, I’m three out of six.’ He freaked me right out. Keep this guy away from me. Don’t let him near me again.”
We laughed but, of course, it wasn’t funny. Here’s another perk of being a nurse: you can share jokes that only you and your patient get.
“In those early days, each step of the way, you can only handle a certain amount of information. There was a girl in rehab, Desdemona. Her husband left, ran off with her nurse. She was so depressed. She wouldn’t exercise, didn’t even try to use her arms. She retreated and was jealous of me because I could breathe. Another guy was jealous of her because she had arms, but Desi was jealous of him because he had legs and a wife. We were all jealous of the paraplegics. They have it made. They can move their arms. But if I was a paraplegic I’m sure I’d be unhappy, wanting to walk.
“That was rehab. Back then, I had a positive attitude. Now, I’m more scared. Suicide has been on my mind a lot lately.” He looks back over his shoulder, up at Rhonda. Their eyes contain his secrets.
Has he ever asked her to help him? What would she say? What would I say if I were his nurse? “Do you have a plan how you would do it?”
“How could I do it by myself? That’s the problem. Think about it. Suicide is hard for a quad. Paraplegics have more options. I came very close one day, a few months ago. I was at the girls’ swimming lesson. They had gotten out of the pool and were in the change room. No one was around. I wheeled over to the deep end and stared down into the water. All I’d have to do was press the button on my chair and roll myself in. I was so close. Then I heard their voices – Juliette and Genevieve. They were giggling. They sounded so carefree. I thought about what it would do to them. To Veronique, too, but in many ways it would also make life easier for her. The girls were the main reason I didn’t do it. At that point, they were the only reason. I haven’t told this to anyone, other than Rhonda, of course.”
What a privilege to be let in, too.
“Now my focus is getting on with life. It’s a choice – get busy living or get busy dying. My chance of walking is nil. My hope is for some mobility in my arms. That would give me more independence. Meanwhile, I have lots of gadgets that help me. A pincer with a fork attached so I can feed myself. A motorized wheelchair. A voice-activated computer. A coughing machine because I’m super-vulnerable to infections. With winter coming, a simple cold could kill me. My cough is weak and I can’t clear my airway.”
Rhonda showed me how his nurses use the device to stimulate him to cough and expand his lungs. They do this every day, and more frequently if he has a cold.
“Recently, I developed an electrical disturbance in my heart so I have a pacemaker. It’s going to take awhile to accept my new reality. I haven’t come to terms with it yet.”
I can hardly come to terms with it myself, just hearing about it.
“I’ve had a lot of time to think about all of this, so in a way, it’s harder now than at the beginning when I couldn’t take it all in. At least I no longer have a fear of death. I’ve lost that.”
Rhonda has taken down the dressing and is examining the wound on his backside. She motioned for me to take a look and Gaétan nodded his agreement. I leaned over his hip to see an open and inflamed ulcer, not overly large or deep, with no sign of infected discharge.
“It’s getting smaller and beginning to show some granulation tissue,” Rhonda reports.
Both signs of healing.
(Hopefully, they both knew that a pressure sore like his is a practically unavoidable result of sitting in a wheelchair for most of the hours of the day. Even Superman Christopher Reeve, who became a quadriplegic after a horseback riding accident, and had the most advanced equipment and the best around-the-clock nursing care, developed pressure sores. Most people assume they’re caused by bad nursing care. Without frequent turning, proper positioning, regular skin care, and the new therapeutic, undulating beds, pressure sores will occur in immobilized people. But some occur because a patient is debilitated, septic, undernourished, or has poor circulation. Healing depends as much on a patient’s health as on a nurse’s technique.)
“These days, how are you doing?”
“Usually four out of six Timbits.” He grinned.
“Ahh, Timbit scores.” Again, not funny, but we laughed. Then I asked him a question that’s no laughing matter. “What has all this done to your marriage?”
“Veronique accepts it more than me. ‘I’d rather have you this way than not at all,’ she says. Her folks were worried because at first she planned to quit her job and stay home to take care of me, but we both knew it would ruin our marriage. Besides, we need her income. Having the nurses come in every morning and evening makes it possible for her to get back to work and have a break from caregiving. Luckily, my injury is severe enough to qualify for twice-daily nursing visits,” he says with a rueful smirk at his stroke of “luck.”
Silence falls and I try to gauge if he’s tiring of my questions. Maybe I should get going and let him and Rhonda get on with his day. I thanked him for his time and put my pen and notebook away.
“I’m glad to be of help,” Gaétan said. “You can ask me anything.” He flashes his full, animated smile that contrasts so sharply with his prone, still body. “Absolutely anything.”
Do I dare ask him what comes to mind as I sit here on their bed, the intimate smell of sleep still lingering in the air? I look at a photograph of his wife hanging on the wall on his side of the bed. She’s beautiful, her toned body draped only in a diaphanous scarf.
“Anything?” I ask.
“Of course.”
Okay. Here goes. “Sex. How do you have sex?”
He gave an easygoing chuckle. “I’d like to tell you about that. I don’t get erect, so we can’t have intercourse, but Veronique sits on top of me and I give her oral sex. I’ve gotten good at it. That’s what she says, anyway.”
“How about you?” How to say this … “How do you get … pleasure?”
“Viagra didn’t work for me, but I may get an implant. There are some new treatments, including surgery, I’d like to try that might make me hard.”
“Why go to the trouble if you can’t
feel it, anyway?”
“It would be for her, to feel me inside her. For me, too, to know that I’m inside her. For me now, sex is all about giving. Veronique’s arousal turns me on, so I try to give her as many orgasms as I can. I have to say, she’s a very willing participant.”
“But when she kisses you or touches you … you can’t feel that? Not at all?”
“I imagine how it feels, I remember how it felt. No, I can’t have an orgasm, but I’m coming to terms with that – excuse the bad pun. Giving pleasure to her is what turns me on now. I’d like to be able to have intercourse, but even though I won’t feel it, I’ll know it.”
“Were you always so comfortable talking about your sex life?”
“No, not at all, but the nurses have helped me. Especially Rhonda. We talk about it all the time. There’s nothing I can’t say to Rhonda.” She looks up from disposing of the dressing change equipment and she and Gaétan exchange another glance of understanding.
“But tell me, when you have a urine bag on your abdomen and a pressure sore on your butt, how do you get into the mood?”
“Sex takes place in my mind, but it definitely has to be planned. We can’t be spontaneous because Veronique has to use the lifter to get me on the bed. I guess that’s our foreplay.”
I looked at the swinging bar of the lifter that he holds on to. For a moment, it looks like what a trapeze artist would use. “Is that all you use the lifter for?”
“What kinky purpose were you thinking of?”
“You read my mind!” The three of us laughed at that.
I went out of the room while Rhonda got Gaétan up into his electric wheelchair. Sure, I could have stayed while she did that, but I wanted to give him back some privacy. Thinking it over now, I realize I also chose to leave the room to protect myself from the heartbreaking sight of this proud, handsome, virile man suspended helplessly in the air, folded into the stained hammock of the hydraulic lifter device.
Out in the sunny kitchen, I made a full pot of coffee. Gaétan rolled in with Rhonda beside him. I’m sure that sitting upright, meeting me eye to eye, must feel more dignified, than talking to me lying down while I’m sitting up. We chatted for a few minutes about our kids and music we like. We admired the view from his window of a beautiful lake that’s practically outside his doorstep, just a short distance from this house to the shore.
Gaétan’s story is tragic, but I didn’t feel sadness or pity – he’s not the least bit pitiful. A tragedy demands that one choose life, and I feel he has done that. He’ll make his new life. He’s on his way. This man is healthy. He’s not sick, just broken, and well on the mend. He plans to go back to work in two weeks for a few hours a day to ease back into it, and he’s looking forward to that. “Not as much for the income as an opportunity to think of things other than my situation.”
“Are you still okay sharing your story with others?” I did a hasty, cursory assessment of his emotions as I put on my coat. He seemed fine, but I wondered if it made him feel vulnerable to open up to a complete stranger who suddenly leaves, taking off with a piece of his story to share with the world.
“I’m okay,” he assured me. “I’m happy to do what I can for VON. Anything for the nurses.”
I bent down to hug him goodbye and felt how much he wanted to hug me back, and his frustration at not being able to do that. I hoped he felt the warmth I felt for him, but what about the warmth of my body against his chest? Can he feel my beating heart against his beating heart? Does he have any sensation whatsoever of my arms around him, embracing him tightly? No, he does not. I know the anatomy and physiology of a spinal cord break. But, maybe there are times when knowing is as good as feeling. If so, he feels my hug in the way that a hug matters most.
HOME AT LAST
BACK HOME, I unpacked and relaxed. I did a few shifts in the ICU, and then, a few days later, repacked and set out on my next trip. Of course, I picked up a stack of letters from Audrey that had arrived while I was gone. But these ones I dreaded opening because I knew I had disappointed her by missing her party. I can feel the reproach in her letters – the teddy bear, kitten, valentine, and snowflake decorations notwithstanding.
I was crushed and broken-hearted not to see you at my party. I started to cry but as the Guest of Honour, I had to keep up a brave face. However, I thank you for your recent and properly dated letter of birthday greetings. I also appreciated your telephone call on my birthday, but not the frustration I heard in your voice with my hearing difficulties.… Please be more patient with me as I am old.
My party was a big hit. You missed a great event. I was the talk of the town. Everyone was there. My friends and all the local “who’s who,” including the mayor. No flowers, of course. My eulogy was read splendidly by our minister, Reverend Matthew Kydd. Here are newspaper clippings about the event of the season.
… still trying to cope with the tortuous toilet seat.… I’m deteriorating fast. My back is going downhill, my vision is failing frightfully fast, and my hearing is hilarious. Make your own diagnosis.… I’m glad I got to see you while I was still partly alive.
… thank you for your powerful letter, a mini-sermonette it was, really. Enough preaching about flu shots and taking care of myself. Come visit me before it’s too late.… It is a chaotic life you lead with all of this travelling from pillar to post and to’ing and fro’ing all over the country. Is it safe for your heart to carry on like this? A visit to precious, peaceful Kemptville is the rest cure you need.
Right now, I’m driving westward along this stretch of highway to London, the exact opposite direction from Kemptville. This strip of highway between Toronto and Windsor, with London midway, is notorious for the highest rate of motor vehicle accidents in Canada. It is a monotonous stretch with few rest stops to break the tedium. Driving at an average clip, it takes three and a half hours to get to Windsor, but I’m driving only halfway, to London. I’m a confident driver, not the least bit nervous, even now in winter with unexpected flurries and snow squalls that can kick up at a moment’s notice or the black ice that you can’t see but sure can feel when you slide into it.
Tomorrow morning I have a meeting with a man named Wayne Ranta. Once homeless, he now lives in government-subsidized housing. The VON office didn’t tell me any more than that.
“Look at me. I’m down to 120. Skin and bones,” Wayne says. “I grew up on the farm, milked cows, had a mother who fed me well. When I left home I was a strapping 190, all muscle. I had nineteen-inch arms, forty-four waist. I don’t want to brag or nothin’ …”
We’re sitting in Wayne’s one-bedroom apartment – well, I’m the one sitting. He’s crouching, because there is no other folding chair but this one. When I arrived, Wayne offered me the chair. “But you should be the one to sit,” I said. No, he insisted I take the chair. He won because he promised if he gets tired he’ll rest on his scooter, which is parked in the corner of the empty, echo-y room. Wayne probably does prefer to crouch. Because of his chronic obstructive pulmonary disease (COPD) – and, in his case, that means emphysema, bronchitis, and a recent bout of pneumonia – crouching on the floor is probably more comfortable. This position likely eases his breathing. Many patients with COPD use this manoeuvre because the physiological mechanism behind it is real. Compressing the diaphragm increases the body’s natural “PEEP,” the positive end-tidal expiratory pressure in his lungs, thereby easing the work of breathing.
We sit together in this dim space, lit by only a yellow light bulb hanging from the ceiling, bare and cheerless – but Wayne is pleased, even proud of it. He’s fifty-four. That’s my age, too, but I look fifty-four; Wayne looks seventy. Unshaven, bent over, with shaggy grey hair that makes me think he trimmed it himself with a pair of dull shears, he’s an old man in baggy jeans, a faded plaid shirt, and a pair of crocheted maroon slippers made by a VON volunteer. Wayne has the barrel chest and clubbed fingers distinctive of COPD patients, a gaunt frame, and long, nicotine-stained fingers. Looking around, I s
ee that furniture-wise, there’s not much, only a bed, a TV, and the one folding chair that I’m currently occupying.
“VON tried to give me a used couch, but they’d already given me a winter coat, so I told them to give the couch to someone else.”
We’ve only been chatting for a few minutes, but speaking is hard work for Wayne. His breathing is already laboured. My instinct urges me to suggest he stop talking to conserve his energy but he desperately wants to speak. He’s grateful to VON and wants to give back by telling his story.
When he was ready to be discharged from the hospital, Wayne had no way of getting home, so a VON program called Home at Last sent an attendant to pick him up, get him groceries, and fill his prescriptions. The attendant made sure the heat was on and checked that Wayne had a sufficient supply of oxygen tanks. “The guy even stayed and made me a cup of tea. I don’t drink tea, only coffee, but it’s the thought that counts, eh? It’s a lot better than coming home like last time by myself to a cold room in the men’s shelter.”
Luckily, a home care nurse visited Wayne for the next few days to help prevent a readmission to the hospital.
“I sure didn’t want to go back there and I didn’t want to go to the family doctor I’d been seeing either. She’d been threatening to fire me if I didn’t do what she said.” He stops to catch his breath. “So, I wrote her a diplomatic letter to say I was firing her. I didn’t like her attitude.” He stops for another breath. “My lungs are shot. Now, my kidneys are acting up.”
“Did you have this place to come to after your hospital stay?” I ask, drawing out my words so as to give him more time to catch his breath before continuing his story.
He shakes his head now. He breathes.
“You must have been living in another place before this one …”
