Authors: Tilda Shalof
“Of course I’ll tell them. I don’t like secrets,” she says.
With my friend Joy, there are some minor grievances lingering between us over long-forgotten matters, but now with this, we are reminded of what’s really important, and we let them go.
“I’ll visit you in the
ICU
,” she says.
“I’d rather you come afterward, when I’m at home,” I tell her. I’m not sure yet how I feel about people visiting me in the
ICU
.
I called Robyn, a few days ago. Friends since we were ten, at
school, Robyn was the pretty and popular one and I was, well,
not
, but that’s never mattered. In her family, there are six daughters and I swell with pride when her parents, Dr. Bob and Norah Sheppard, refer to me as their seventh. They “adopted” me during my miserable adolescence when I wanted a different family than the one I had. After all these years, Robyn is every bit as beautiful, with her completely natural, unmade-up looks. Even though we live far apart (she’s in British Columbia) and don’t see each other much, we know every detail of each other’s lives and couldn’t be closer or more in tune with one another.
“Remember that day when we were hiking on Pulpit Rock?” I started off, falsely upbeat and dispensing with greetings as we always do. She remembered it better than I did; what happened up there scared her more than me. When I said the words
open-heart surgery
, she gasped, but I continued on, explaining in clinical detail what’s involved, underplaying my fears. I could tell Robyn was baffled; she couldn’t read me. It was unlike me to be so unemotional, so preternaturally calm. But I’ve had time to get used to this idea and work toward this state of acceptance; she’s hearing the news for the first time. She probed deeper, wanting to know how I’m
really
feeling. “Is there something you’re not telling me, Til?”
“Only that anything could happen. I believe it’ll go well, but you never know …”
“Are you having a premonition?” Robyn’s in touch with the metaphysical.
“No,” I assured her and we fall silent for a few long minutes. Odd, but in our forty-year friendship, we’ve never been at a loss for words until now. I’m afraid she might cry, so I rush to get off the phone quickly. “We’ll talk soon,” I promised, thinking how love has a way of reminding you of all you stand to lose.
Now as I tell other friends, they react with surprise and concern. Since no one knew I had a heart problem, this comes completely out of the blue. It shocks them.
“How terrible! That’s so scary!” they say.
Could this happen to me?
I see them wondering.
What are the symptoms? How do you know if you have this problem?
We are all at the stage in life when it’s beginning to dawn on us that we won’t be around forever. Having kids reminds you of that and so does heart surgery. Their worry burdens me and makes me feel guilty for having caused it. I’m used to making things better for people, not worse. Some friends nervously regale me their own health problems and those of their relatives, or share their hospital horror stories. I reassure them of my good prognosis, and tell them a few medical jokes. I attempt to lighten up and change the subject, but it’s not easy now, with this news out there.
One friend asks if I’ve told our rabbi, but I don’t believe in turning to religion at a time of illness or crisis. It seems false to me. But I’m just as superstitious in my own way. I even have a phobia about prayers, thinking they’ll jinx me. For example, I never say, “Have a safe trip” or “Be well” because I can’t bear to think that a trip, or you, could be other than safe or well. On the other hand, it’s just something people say. It’s never been a stretch for me to believe in things unseen or unproven, and yes, I do believe in God and feel a desire to pray, but it seems undeserved and hypocritical to start now. Besides, if I was going to pray, I’d do it in out in nature somewhere, where I can feel the presence of God, not sitting in a noisy, crowded synagogue.
How’s this, God? Can we cut a deal? If I make it, I will start going to synagogue – as well as every church, temple, and mosque
. Yes, I’ll join any group that will accept me and that has good music.
Every since my angiogram three weeks ago, I’ve had a strong sense of taking charge of my patient journey. I have been preparing
myself for this event like an athlete in training for the Olympics. I’m taking excellent care of myself, getting lots of rest, eating well, meditating, breathing, and reminding myself to smile, laugh, and be cheerful, especially in front of my kids. I carefully select the Internet information I expose myself to (nothing scary or upsetting) and am highly selective about the company I keep, allowing around me only those who are calm, balanced, and positive. The words people say and the energy they bring affect me as strongly as medications and I take care to titrate the dosages carefully, exactly like I would give a drug in the
ICU
, one that goes straight into the circulation.
“Stop trying to direct everything,” Ivan says. “You’ve become a control freak.”
“Some people make it harder for me. I don’t want them around me.”
“They don’t mean to. They only want to help. People have a right to react however they wish.”
“But if they are anxious or negative or worried, it affects me.” I see his skeptical expression. “I’m talking on a molecular level,” I insist. He shakes his head. None of this makes any sense to him and only seems like I’m being difficult and ungrateful. As always, he’s maddeningly sensible, but I’m the one in charge and I’m doing this my way! For now, I’ve put the kibosh on pity parties, fear fests, and worry warts. I’m in survival mode and have decided that what I need is to be around people who are strong, who believe I can do this, who will let me express my fears, listen, but then bolster me up. I want to be around only those with a healing, hopeful outlook. That description sounds like nurses. It’s time to tell them.
One thing that is strange and troublesome is that Robyn hasn’t called back since that phone call over a week ago. It’s so unlike her
to avoid or ignore me. I waver between curious and furious. Maybe she didn’t hear me correctly? Is it possible she doesn’t get it?
There’s something else I have to do before my surgery. It was Monday when I saw Dr. David, it’s now Wednesday and I could be called for surgery any day. There’s not enough time to consult with a lawyer so I sit down to document my wishes about my care in my own words. It’s not an easy thing to do. No wonder most people don’t do this. How to cover all exigencies and leave no ambiguity? I’ve heard families argue over the meaning of words such as
reasonable
or
chance
or
recovery
. As one family member put it, “Even a 1 per cent chance is better than 0 per cent. I am holding out for that miracle.” Ultimately, whatever I write or say, it will be up for interpretation by the people caring for me, most importantly Ivan, who will be the one to speak on my behalf if I am unable to do so. There’s just one problem with that and it has to do with a dog.
Twenty years ago, just before we got married, we adopted a puppy from an animal shelter. A black and white terrier-poodle mix – so cute. The other dogs were barking madly and he was quiet. We named him Rambo, enjoying the joke of such a fierce name for such a docile puppy. Soon after we got him home, Rambo found his voice. He barked at his shadow, his reflection in the mirror, at the ringing of the telephone, and, of course, at the person who delivered the mail. (Question: Why do dogs bark at the mail carrier? Answer: Because it works.)
Rambo barked for eighteen years. (We didn’t have the Dog Whisperer back then.) He lived well and had a voracious appetite for all the things dogs aren’t supposed to eat, like chocolate bars (Kit Kats, especially) pointy, brittle chicken bones, and gristle and fat scraped from our plates. He loved beef stew but picked out the mushrooms and made a pile of them on the side of his bowl. “I don’t know what you’re feeding him,” the veterinarian said, “but keep it up.”
Rambo was a dog’s dog; indifferent to our affection, he enjoyed only the company of other dogs. Whenever the front door opened, he’d make a mad dash for freedom, as if busting out of jail. He was always fleeing our home for refuge elsewhere, once at the local high school a few blocks away.
At fifteen he began to slow down. (Afterall, he was really 105 dog-years old!) At night he would fall down the stairs. Lying in bed, Ivan and I listened to him, bump, bump, bump.
“He’s blind,” Ivan said. “He can’t see the stairs. We should take him to the vet.”
Why? To be fitted for glasses? How would he read the eye chart?
At sixteen, Rambo went deaf, but it didn’t make a difference to us since he never came when he was called anyway. He was the Helen Keller of dogs, blind and deaf, brave and stalwart – though not mute.
At seventeen, tumours sprouted on his legs, back, tail, and penis. He limped and hobbled, his back legs gave out. Yet he kept trying to drag himself to the door, to make a bid for freedom whenever possible.
At eighteen, he was incontinent – all over the house – but Ivan felt it would be undignified for him to wear a diaper. Rambo slept all the time, waking up only for his food. “See, he still has an appetite,” Ivan said, not the least bit concerned that he threw up all his food after each meal. Ivan loved Rambo completely and unconditionally, and that was that. To Ivan, love means never stopping love or giving up.
This is what families say. They can’t let go because of love.
I hope no one loves me this much
,
ICU
nurses often say to one another.
I loved Rambo, too, perhaps not as much or as well, but in a way that allowed me to let him go. When the time came and he was drawing his last breaths, Ivan laid Rambo on a cushion and
brought him to me. “Goodbye, Rambo,” I said, patting his furry head (Rambo’s, not Ivan’s).
We didn’t put Rambo on life support, nor did we resuscitate him (though if he’d gone into cardiac arrest I’m sure Ivan wouldn’t have hesitated to perform “mouth to snout”), but we didn’t do anything to ease his discomfort either. The point is, I don’t want to linger like this if I become incapacitated like that, out of control of my body, or in obvious pain.
Please, do the kindest thing and ease my suffering!
Can I count on Ivan to represent my wishes?
If I’m on prolonged life support and it’s not looking good, my family will be asked to consider what was important to me. “What was Tilda like?” they will be asked. “What were her goals and values?”
There are certain phrases families always say about their loved one when they’re considering what steps to take in their care, and my family will probably say something similar about me, too. One is, “Oh, Tilda – she loved life.”
Yes, I do, but on my own terms. I do love life, but not at any cost, not without condition. I love life, but I’m not prepared to compromise. I want to live, not merely exist. I don’t want to live if I can’t take care of myself and my family, if I have to be taken care of by others. Yes, I believe in the sanctity of life, but even more, I believe in the meaning of life – according to my definition of it, for me. If I lose my mind or my independence, let me go!
The other thing families say and mine will likely say, too: “That Tilda, what a fighter!”
“Tilda never gave up. She wasn’t a quitter.”
Oh, yes I did, yes I was. I don’t take on futile battles or ones that I don’t believe in. And I don’t want to be kept alive only to exist or to be a burden on my family
.
Many nurses feel as I do. Maybe it’s because we see our patients’ suffering up close and personal. We are the closest witnesses to
exactly what they go through. We feel tormented when we prolong and increase that suffering by engaging in futile treatments. We definitely don’t want that for ourselves. The irony here being that most nurses say they would refuse many of the very treatments that our patients are receiving. I have heard so many nurses express these sentiments that it would be interesting to conduct a survey of nurses’ own end-of-life wishes and compare them with a control group drawn from the public. I have my hypothesis of the results; what’s yours?
There are other matters we should all consider – not just those of us facing major surgery – such as organ donation. I need to sign a consent form, but more importantly I must tell Ivan my wishes. Families can override patients’ documented decisions. They get to decide because once you’re dead, you don’t own anything, much less your body.
Power of attorney can be for finances and/or for carrying out wishes about care and treatment, which reminds me of my father’s fondness for an old Jack Benny joke about a robbery. (Warning: You may only find his joke funny if you’re approaching fifty or about to undergo major surgery.)
A guy is walking home at night and hears footsteps behind him. A voice says, “Don’t move. This is a stickup. Your money or your life.”
The guy pauses.
The robber repeats his threat. “Your money or your life, mister.”
“I’m thinking it over,” he finally replies.
So, here’s another research question I would like to investigate: How well do the hypothetical decisions of substitute decision-makers
(SDMS)
correlate with those of the patients who have appointed them? “In Scenario X, would the patient want to have a feeding tube?” or in “Scenario Y, would the patient want to be intubated or prefer to have comfort measures only?” How well do
the
SDMS
know the patients’ wishes? It’ll be a macabre twist on the old
Newlywed Game
, where spouses are tested on their knowledge of the other’s preferences. “Does she like candy or potato chips?” “What did you do on your first date?” “Who usually initiates sex?” Believe me, the results of my study would be every bit as fateful!
Next, I call the members of Laura’s Line and tell them, one by one. They promise to check up on me and visit me when I’m home. “Do you remember Rambo?” I ask Laura.
“Of course! How could I ever forget?” she says and immediately knows exactly why I ask. “Don’t worry, we won’t let Ivan ‘Rambo’ you. When he goes out to put coins in the parking meter, we’ll pull the plug on you.”