Pain is a great leveler.
I write that to explain why I had an unexpected reaction last year when I learned that doctors had misdiagnosed my neuro-endocrine tumor, and that I was likely headed for surgery. I didn’t want to tell my family, but not for the reasons you might expect.
Over the last two decades, I believe that I’ve shown great courage many times, but I understand that my family and friends didn’t see it that way. That’s the unwritten manifesto of pain. When I struggled out of bed with migraine―head throbbing, stomach lurching―to attend a family gathering when all I wanted to do is curl up in a ball and die, I felt ennobled.
But, with migraine, the pain is invisible. It doesn’t cause scars, or wheezing, or require confinement in a wheelchair. So while I continued to struggle, over time, I realized that the people in my life didn’t see strength, but weakness each time I showed up pale and shaky at a party. I felt that I was showing them how much I valued spending time with them — they felt I was harping on how hard my life was.
I noticed it in their eyes, their increasingly dismissive comments. But acquaintances weren’t the only ones who lacked empathy. Doctors told me that I wasn’t a migraine-sufferer, but a drug addict. An aunt wondered (aloud) when I was going to get off my ass and make something of my life. When my money dried up and debts mounted, one sibling criticized my stinginess towards my nieces and nephews at Christmas. One of those nieces, now an adult, told me I wasn’t much fun any more.
And the truth is that I can’t blame them — any of them. My situation was impossible. Eternally sick, every day a fresh misery. It overcame any good inside me, and I gradually found that I didn’t have anything to look forward to. Holidays held no joy. I couldn’t afford a vacation. I could no longer play hockey or practice karate. Movies and music intensified the throbbing. My life transformed into a relentless string of days to be survived. So I understand that I wasn’t a man whose company was much-desired.
But understanding doesn’t mean that it didn’t hurt.
When my sister was diagnosed with cancer a couple of years ago, my family rallied around her in a way that was both heartwarming and inspiring. We celebrated her life, Ran for the Cure, cooked special meals, accompanied her to chemo, secured marijuana to help her cope with nausea.
So it’s embarrassing to admit that in her darkest hour I have never felt so alone. My 14-year illness was dramatic, but inconspicuous. She was battling something that was frighteningly tangible, and I bled for her. No one suggested that she was malingering. No one whispered that she was suffering from depression or an anxiety disorder. They understood she was taking no more drugs than she needed to dull the pain. No one bought her a new suit so she could look better for the job interviews that she was undoubtedly lining up.
So even though I knew my family would support me through my upcoming surgery, I couldn’t cope with these contrasting memories. Instead, I let them think that I just didn’t want to talk about my pituitary tumor and the misdiagnosis. In truth, my family has been incredibly generous to me, especially in the years since our mother died. I know that; I am grateful to them every day though it’s difficult to vocally appreciate their generosity, and it bothers me that I need it at all. Even so, the sting of previous chastisements runs deep. Because of the unrelenting pounding in my head, I’m not the man I wanted to be, nor the man they wanted me to be.
These musings were teased loose by Catherine Bush‘s Claire’s Head, an immersive mystery chronicling the relationship between sisters bound tightly by migraine pain. The mystery that drives Claire’s Head is the story of desperation, of a woman who makes frantic decisions because pain has pushed her to the very edge. I find myself in every page, every paragraph. It’s not always a pleasant revelation.
Claire speaks of being “neuro-chemically fragile”, a wonderful description. She cringes when someone lights a street cigarette, knowing she must rudely push past, holding her breath. She recounts the instant nausea of stepping into a gathering of friends and being overwhelmed by a fog of perfume. She describes the shakiness of an impending migraine, when all you want to do is scream or medicate yourself into oblivion.
She relates the fear following the failure of the first line of migraine defense — pills and protein. I chuckled in recognition when Claire digs through her pharmucopia for Tiger Balm; its cinnamon-sweet, mentholated scent (and fierce burn across the forehead) has kept me company through many lonely nights.
Claire also suffers because her disease is invisible. From the outside, her suffering makes her seem joyless, and self-centered, old before her time. While inside, she’s just doing her best to keep living, through the pain. Day by day, one foot in front of the other, trying to find a sister who traverses the globe as she seeks desperate healing.
It’s a difficult and fascinating read because it is my own story.
But here I am, with what may be yet another light at the end of the tunnel. And I know that I am lucky. My family is extraordinary, kind and generous. I often think those who suffer in silence, who are utterly, heartbreakingly alone.
I try to speak for them because I can, because diminishing pain has placed my fingers to the keyboard again. I know that I’m inadequate to the task, but I can’t help but hope that it will cause one or two people to stop and consider — that man on the sidewalk who glares at you as you light up your daily cigarette, your friend who turns down invitation after invitation. Their unmannerliness may have little to do with you and everything to do with the purgatory they live within their own bodies.
There is an old Jewish proverb: I ask not for a lighter burden, but broader shoulders.