A few days ago, I lost someone I cherish, my mother-in-law of seventeen years, Marjorie Feldman Springer, who died of an extremely aggressive form of leukemia. Marge was a vivacious, energetic, athletic person, who biked, hiked, swam, played a devastating game of tennis, and was rarely sick with even a cold until eleven months ago, when she received a diagnosis I wouldn’t wish on anyone.
Yesterday, I found a draft of a letter I’d written to her while she was in a Manhattan hospital last fall, when her immune system was too compromised to have visitors who had so much as a sniffle and I had lost my voice and couldn’t speak to her on the phone. I wrote the following in my notebook, copied it in my best handwriting (which isn’t very good) onto a watercolor painting one of my children had made, and sent it along with someone healthy enough to visit her.
Things have come to a pretty pass when I’m too contagious to visit you in person and my voice is so shot that I can barely squeak into the phone to you. So, I’ll communicate with the one means left to me, hoping that after a few days of antibiotics, I might be sterile enough for a visit.
I was reading a blog the other day by a breast cancer survivor who was railing against what she called the tyranny of the pink ribbon, the cult of relentless, cheerful enforcement of mandatory feminine positive attitudes. Bad enough that I have cancer, she was saying, but now I have to have a positive attitude about it too? Or what? I’ll die? People won’t like me? I’ll be considered an unsuccessful cancer patient? Not a good sport?
To hell with it, she seemed to be saying. I feel what I feel, and maybe when I finish feeling nauseous and sad and scared, and express it to my family and friends, then maybe, if I want to, I’ll have room in my heart for a positive attitude. And until I do, don’t tell me that I should.
You can’t enforce one feeling, nor banish another. We have no choice but to feel or repress, and repression is just a worse way of feeling.
So, if I could visit you, I’d pull the chair really close to your bed and whisper, “God damn this thing,” and give you the space to agree or disagree or change the subject or express whatever you want. I hope you’ll do it whether I’m there are not, with family or the nurses or friends who come to visit. If you’re angry, be angry. If you’re sad, be sad. If you want to think about something else for awhile, and you can, then do it. And if you feel like having a positive attitude, then by all means, have one. I hear it’s helpful. But don’t let anyone manipulate you into faking it. All obligations to put a cheerful spin on the world are suspended for the time being.
Now, I’m also free to have whatever attitude I like, and I have to tell you that I’m very optimistic. You are very strong and resilient. If anyone can survive this, I think you can. I think we’re all going to be together again soon in the Catskills or at my house or in Florida, looking back at this experience, grateful that it’s over and that you are fully recovered. “Wasn’t it horrible?” we’ll say. And someone will say, “But at least Marge never lost her positive attitude,” and you and I will exchange conspiratorial glances. I will pour you another glass of wine and pass you another brownie.
I hope you continue to respond well to treatment. I’ll come when it’s safe and call when I can talk again.
I was able to visit her a week or two later, and I did draw my chair close and say, “God damn this thing, huh?” and she did tell me exactly how awful everything was, but it’s strange how transgressive it felt, as if we were whispering about a shameful secret.
We pile such impossible, heartless expectations onto dangerously ill people in our youth-obsessed, death-denying, positive-thinking society. People who can’t survive a traffic jam without screaming or a bad day at work without an extensive happy hour afterward expect cancer patients to mystically transcend the pain, uncertainty, humiliation and fear of their illnesses and become inspirational to us. While some cancer survivors have said that cancer was the best thing that ever happened to them, that it made them more spiritual, less materialistic, and more engaged in the present rather than focused on the future, that is their experience, not a standard against which all cancer patients must be judged.
And what is this positive thinking that is demanded of sick people, anyway? I’m going to guess, because I’m too sad and exhausted to look it up right now, that there have been studies suggesting that cancer patients with positive attitudes had better outcomes than those who didn’t. Maybe the science was good, and maybe it wasn’t. Maybe people who knew they had a better chance of survival were unsurprisingly able to have a better outlook on their lives than those who suspected that they were doomed. I don’t even know how anyone could design a study to control for a positive attitude. Diagnoses vary, even within the same type of cancer, and people are diagnosed at different ages, with different medical histories, not to mention different doctors offering different treatment plans. How would a researcher ever be able to ascertain that the positive thoughts were the determining factor in someone’s survival?
But pushing all skepticism aside, supposing that it is irrefutably the case that cancer patients with a positive attitude outlive those without one, the attitude would have to be genuine. It would have to arise from a deep conviction that medical science and luck were entirely in that patient’s corner. We can’t fool our cells, or God, or the Universe, or whatever one believes is compiling the “Naughty or Nice” list of cancer patients’ attitudes. Thinking we can would be bad science and worse theology. A positive attitude that truly aids healing couldn’t be faked. It couldn’t be parroted. It certainly couldn’t result from a sick, worried person being commanded, bullied, or shamed into saying whatever she must say to convince her friends that she has a positive attitude so that they can go home from the hospital visit feeling better.
If we want to help those we love when they are really sick, we need to hold their hands and listen. They need the space to talk about whatever they are feeling, not instruction in the correct way to feel. We can’t cure them. We may not be able to ease their suffering. But we can all open our hearts to hear whatever they need to say, no matter how difficult it is, no matter how uncomfortable it makes those of us who find ourselves, for now, on the other side of the sickbed.
In memory of Marge.