Opening My Heart (12 page)

“Why do you always have to think the worst?”

You don’t know what I’ve seen
, I am about to say, but Ivan would see this as an excuse so I keep my mouth shut.

“You’re so negative,” he continues.

Yes, but only toward myself. I would never be like this with my patients. Why this double standard? I don’t know.

“I hate to think how you’d react if you had something really serious.”

Normally, this comment would infuriate me. It would incite me to make an angry retort, then retreat and sulk, but I’m too preoccupied with being upset about so many other things that I can’t bother to react.

“You’re getting worked up for nothing,” he says while taking up his post on the couch in front of the
TV. TSN’S
SportsCentre
. “Everything will be all right. Well get through this. Together.”

I go over to sit beside him on the couch for a few minutes and stare into the
TV
.
If you can’t beat ’em, join ’em
.

“I’m losing control of my mind,” is all I can say.

“Let go and you’ll actually have more control.” There’s a pause, since my
TV
Buddha dispenses his koan-bytes during commercials. “Life’s tough. Deal with it.”

I have to admit, these banal, maddening phrases do contain bracing truths.

At camp, doling out meds, soothing mosquito bites, removing splinters, and consoling homesick children by day – and occasionally at night – helps to keep my mind off my own problems. Most evenings, I steal away for a few minutes from my nurse partner and friend, Alice, and all the clamouring campers in the infirmary to call Vanessa.

A few days before camp started, Steven, Vanessa’s husband, had a cardiac arrest and was without vital signs for almost thirty minutes. Since then he has not shown any signs of awakening. The
CT
scan of his head showed damage due to prolonged anoxia, or lack of oxygen, to the brain. Vanessa knows the prognosis is grim, but Steven’s parents remain optimistic that he will fully recover. She spends the days at his bedside, looking for signs of life, for signs of Steven.

As soon as I arrived at camp, I realized that I had to tell Alice my secret. She needed to know why I wouldn’t be running up the hill to campers’ cabins or joining her for hikes in the woods or swims in the lake, as we usually do every summer. But it turns out she had noticed something was wrong with me ever since her son’s bar mitzvah celebration a few months ago.

“You got up to dance and then sat right back down,” Alice said. “That’s so not like you, Tilda. You looked exhausted. I’ve been worried about you.”

There’s a big hill leading up to the cabins in the forest and smaller ones all over. Alice said she would do most of the legwork while I stayed put in the infirmary. Our days start early in the morning and usually finish after midnight, which is when the counsellors drop by the infirmary to chat about their own problems, restock their first-aid kits, and “chillax.”

Later, that first day, when we ran through the mock emergency drill including use of the
AED
, the automated external defibrillator, she gave me a worried glance. She knew who’s the most likely candidate at camp to need it.

Camp is fun and the kids’ high-spirits cheer me up, but at night when I close the door to my cabin and lie down on my narrow cot, I return to obsessing about my heart. The wind in the pine trees outside my door, the fresh air, and beautiful lake, a few steps from the infirmary – all things that usually delight me – I barely notice. Alone with my thoughts about what lies ahead, I’m scared out of my mind.

Anxiety rises up in waves of panic. Often I get up and work on “The List,” a growing inventory of fears. I fill one notebook, then another, no matter how outlandish or far-fetched, with everything I’m afraid of about this experience ahead of me. After one week at camp I have quite the list. I read through it, feeling a shiver of fear with each item.

• Not being here for my kids! Harry at the flagpole this evening kept his distance from me – wouldn’t even say hi. Thirteen years old, he’s acting like a typical teenager, but it hurts. Maybe it won’t be so bad for them if I’m not around. What if I make it but am unable to take care of them? What good is that? A lung transplant patient told me how hard she worked to hide her infirmity from her son. “I never wanted him to see me, you know, on oxygen.”
  

  “Did he?”
  

  “Yes,” she admitted, “but that’s all he saw, me on oxygen.” Harry is on to me. For some time, he’s noticed that something is wrong with me. For Mother’s Day he made me a card by photo-shopping my head on to Lance Armstrong’s body out in front of the pack in the Tour de France, with a gently sarcastic caption about my athletic prowess. Harry knows way more than he lets on. Max at eleven years knows what he knows and lets you know it. He came by today to say hey and make me laugh. “It’s my job, Mom.” Harry’s quiet jokes creep up on me unawares while Max’s are out in the open. They’ll be fine without me. They’ll survive. Besides, they’re always complaining about my food
  . Mom burnt the soup again, etc.
  Ivan is a much better cook
  .
  

• Cardiac catheterization! Invasive and uncomfortable, but worse than the procedure is the results. If I have blocked arteries, I will need a bypass as well as a valve replacement
  .
  
• A screw-up! Too many possibilities to enumerate
  .
  
• Complications My own body letting me down! Ditto
  .
  
• Surgeon Having an Off Day – I went to a hairdresser once who said that sometimes he just didn’t feel like it – cutting hair, that is. What if your surgeon isn’t in the mood that day?
  
• Cracking open my ribcage! Sternum cut, ribcage pulled apart, chest cavity cracked open. The deepest invasion
  .
  

• Going under! Where will I be? Gone! The void! A black hole. The lost time! An anesthesiologist friend I know once told me that every patient asks if they will wake up. “It’s my job to make sure of that,” he says
  .
  

  Another friend told me that a radio was playing in the operating room as she was being wheeled in for surgery. The
  moment before she went under, her last memory before the lights went out was the opening bars of “Stairway to Heaven.”
  

• The visuals! The splash of red, the blue
  OR
  scrubs, the steel instruments probing inside my body. This is what is meant by the expression “going under the knife.”
  
• The soundtrack! Hushed voices surround the grey, anesthetized body (me!) on the operating table, the whoosh of the ventilator breathing for me, the sucking of spilled blood to salvage my own red cells so, I hope, I won’t need a blood transfusion
  .
  

My mind has gone wild, but keeping things in perspective has never been my strong suit. I close my notebook and think about a friend of mine, Daphne, who died of cancer. All the time she was ill, she never allowed herself a single negative thought. “I don’t permit them in,” she would say, laughing at her diagnosis. She refused to believe she was dying; even at the moment of her death, she remained unconvinced. Her optimism was admirable, for sure, but it’s not me – at least not yet. First, I have to face this head-on, eyes open, knowing all the details, and then still choose to go forward with it. Being naively positive feels like I’m deluding myself.

I call Vanessa again the following week. It’s now been three weeks since Steven’s cardiac arrest and he remains deeply comatose. Vanessa doesn’t know whether to hope for improvement or to begin to let go. “What would Steven want?” she asks herself. It’s the right question to ask; its answer will guide her to advocate in a way that is in keeping with Steven’s values and beliefs. The doctors have explained that he’d been without oxygen for so long that his brain is permanently damaged. He’s off the ventilator now, just on an oxygen mask, so he’s been transferred from the
ICU
to a step-down unit.

My thoughts are with Steven, but I can’t help but think of my situation, too. For years, I’ve talked about scenarios like these with Ivan, always in connection with patients. I’m not certain he knows my end-of-life wishes, nor do I about him. Do most spouses? Here’s yet another thing to add to my growing “to do” list: have that difficult conversation with Ivan. Just in case.

This summer, I’m preoccupied with my own problem and can’t muster my usual patience with campers, especially Kevin, an intense and inquisitive eleven-year-old who comes every morning for
ADD
meds and badgers me with queries and observations.

“I have a question,” he starts off, thinking out loud and gazing around at all the packages and bottles of other campers’ meds. “What’s that one for?” “How many pills do you have here? “Where do you sleep?” “Do you give needles?” I’m relieved when his counsellor leads him away to breakfast. “I have a question,” I hear him saying as he walks past the window toward the dining hall. “Do you think the nurse will let me try out her stethoscope? Can I ask her later?”

I admit it. I have a soft spot for the kids with headaches, the anxious and the homesick, probably because I’ve had these conditions myself. It’s harder for me to be sympathetic about splinters, warts, and bumps, bruises, or little cuts, since those things don’t bother me and I don’t pay much attention to them even when they affect my own children. So often empathy comes out of your personal experience, but it shouldn’t be that way, especially not for nurses who are
professional empathizers
. “Empathy” makes us good at what we do and is one of the main tools of our trade. We expect ourselves to be able to conjure it up and provide it for all who are in our care – we are equal-opportunity empathizers – or at least we are supposed to be, but it’s not an easy gig. One nurse I know always seems
to lavish extra care and attention on
HIV
-positive patients ever since her own brother was diagnosed with same thing. A new graduate becomes an oncology nurse in the aftermath of her mother’s death from lung cancer; she has a need to experience or explore something personal through her work. We’re not supposed to have such biases or allow our own issues to affect our nursing care, but the reality is that sometimes we do.

Empathy can be a challenge at times, even at camp. Sometimes I wonder at the different responses of children. There are some kids who get upset about relatively minor things such as a bug bite while others seem unconcerned about a fever or even a fracture. Parents’ reactions can be just as idiosyncratic and unpredictable, like the mother I called about her son’s infected rash that the doctor wanted to treat with an antibiotic. She seemed surprised that we’d bother to call her at all about something she considered trivial. For my part, I was surprised at her calm response, but it made sense when she happened to mention she was a nurse – a cardiovascular anesthesiologist first assistant.

“Can you do everything an anesthesiologist does?” I inquire.

“Yes, except get paid like one,” she says ruefully.

I hesitate but have to ask. “Have you ever assisted in the
OR
with valve replacements?”

“Yes, many.”

“How do these patients do, generally speaking?” I say casually, covertly trawling for insider information.

“Most do very well. Why do you ask?”

“Just wondering.”

It is the middle of the night and I bolt up out of bed, my heart pounding, my mind racing. I pull out my notebook, intent on recording each fear, the rational and legit ones, all mixed together with the
bizarre and nonsensical. I explore each one in order to weaken its hold over me, in the hope that this list will eventually come to an end.

• Cardioplegia – Stopping my Heart. It’s done with a lethal injection of potassium chloride, but how do they start it up again? What if it wants to keep on resting? The cardiac monitor will show a flatline. That’s not a mere blip on the screen! What a world of difference there is between
  

  

  It’s not merely “life” versus “death,” it’s alive versus dead. A walking, talking person versus a cold and still body
  .
  

• The Heart-Lung Bypass Machine. Too much or too little blood thinner, air bubble in the tubing causing an embolism, or a machine malfunction. My life will be dependent on a machine, even more on the perfusionist, the person operating it
  .
  
• Being awake during the surgery. The horror of being locked in, aware of them cutting into me, and not being able to let them know. It’s a rare but not-unheard-of phenomenon
  .
  
• Not waking up afterward. If I die, I won’t even know I’ve died. Everyone will know but me. I will be left out of the loop. It seems unfair
  .
  
• That I will wake up but … That I’ll be in an impaired state, cognitively damaged or weirdly different, a burden to my family, a “cardiac cripple.”
  
• Loss of dignity. I will lose control of myself. Families always say their loved one is never like that. “Dad is so gentle. He would never hurt anyone,” a daughter said in shock after watching her father kick at a nurse, yell obscenities, and try to climb out of bed
  .
  
• The surrender. It’s a total loss of control. I’ll be at the mercy of others taking care of me. All I will have to go on is faith and fate
  .
  
• The allure of despair – What if I don’t fight to survive? What if my survival instinct isn’t sufficiently tenacious? If I was adrift at sea or trapped in a burning building, how hard would I fight to save my life? I’ve never been confident of my answer
  .
  
• Death – Part II – In our household, the word “bored” is forbidden, but I have to admit, death does sound boring. I’ll be missing out on everything!
  
• The irretrievable loss of time. Something important is being done to my most vital organ and I’m going to be sleeping through it, unavailable for the main event and will have no memory of it. “A la recherché du temps perdue,” as Marcel Proust said
  .