We are wired to belong: to seek community, to be needed, and most of all, to be understood. That is where it comes to a screeching halt for people with chronic illness and disabilities. We share a vocabulary with the “healthy” world, but common words mean different things to us than they do to other people. Which can leave us isolated and misunderstood.
I will never forget a healthy mother of four asking me why I only had one child. I responded that I had been so sick, so tired, after my son’s birth that I could not get out of bed to take care of him, and that my husband and I had decided one was enough.
She stared, uncomprehending.
I told her that following my son’s birth, I had been hospitalized for a week. My doctors released me only on the condition that I had 24-hour assistance for at least a month.
The mom-of-four responded, “But everybody’s tired after having a baby. If you’d had other kids at home, then you would have had to get up. You wouldn’t have had the luxury of laying around.”
I sputtered, “But I was really sick. I was so tired that I would fall asleep while I was eating. I didn’t have a choice. . . ” She just stared at me as we talked past one another. There was no understanding.
Lack of understanding is painful enough when is in people who are acquaintances. But recently a friend who I have known since childhood, someone I trusted implicitly, betrayed me with a similar lack of understanding.
This friend is strong where I am weak. I thought we complemented one another. But lately, when I would say that was too tired to do something, she would tell me how everyone’s tired, how even her Amazonian sister-in-law was tired–taking the train from upstate New York to New York City for weekend jaunts instead of driving. When I explained that tired, for me, means that I have to take a nap in the parking lot if the dog groomer takes longer than expected she just stared at me, as uncomprehending as my acquaintance, the strapping mother-of-four.
Later she told me that I was always complaining. Funny, I thought I was explaining.
Normal people use words like tired and exhausted to mean ordinary fatigue that is to be expected after activity. For me, and probably for you, those words mean something different. I acknowledge fatigue only when it threatens to overwhelm me. When I say I’m tired, what I mean is I am likely to fall over soon; my fatigue is so great that it is no longer merely uncomfortable, but has become unsafe.
The variety and intensity of symptoms that we endure daily is simply incomprehensible to most people. Our fatigue, our pain, our lives are incommensurate with normal experience: no shared yardstick, no shared measure. So while we long to be understood we must strive to be satisfied with being able to understand. It’s not about us; it’s about a lack of shared experience.
And then there are the flashes of light. . . .
One day, when my mother was undergoing chemo, she called me up in tears. “You must hate me, she said.”
“Why?” I asked.
“All those times when I told you to go out and take a walk or go to lunch with your friends and you told me that you were too tired, well now I get it. You must feel all the time the way other people feel when they’re on chemo.”
For once, I was the one who was speechless. To be understood is rare and precious.
So, I try to hold those moments close. I try to remember that I am merely an instrument in a vast Elysian symphony; it’s my job to discover what tune I was chosen to play. Playing with everyone else, lost and lifted by the swell of the music is healing, but sometimes the other instruments fall away and my song rings out into the silence. When this happens, instead of feeling like a voice crying out in the wilderness, ragged and alone, I try to tell myself, “Hey, you got a solo!”
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