After learning the devastating news about our young son, we needed to feel connected to friends and family and not just exist outside of his imagination.
“I can’t imagine what you’re going through,” another acquaintance who heard the news about my son told me. “Very sorry.”
“Here we go again,” I thought. “Right in the fruit and vegetable aisle.”
I didn’t know whether to smile or cry. I looked for something to lean on, but all I found was a hard ginger root. It wasn’t very reassuring, but nothing would be. I already knew that.
I was unable to figure out why this type of interaction—common in the months since my husband and I learned of our son’s horrific diagnosis—affected me so much. Yes, it’s always hard to know what to say when you learn that your 3-year-old child is suffering from an illness that will slowly and painfully take his life. But something about the sentence “I can’t imagine that” struck a chord with me.
I could see that a classmate’s mother was sad and uncomfortable, but I didn’t want to assume that she knew what I was going through. No one wants to insinuate that they know what it feels like to be nine months pregnant with their third child and tell them that their second child has Duchenne muscular dystrophy, a deadly disease that, like ALS, destroys the body until there are no muscles left.
My approach to this situation was to reassure people, “I’m fine. We’re strong. That’s life.” Anything to put an end to the person’s grief and our meeting so I can go through the items on my shopping list again.
However, this time it was different. As if watching a film of our exchange from the theater seats, I suddenly realized why I felt so bad. I barely heard what he said next because I was lost in my own revelation.
“These aren’t just empty words,” I thought. “She really isn’t able to imagine my life. She thinks my life is so horrible and otherworldly that it can’t exist in her imagination.”
On that fateful Monday, months earlier, when my husband received the news of our son’s diagnosis, he called me at work with four simple words: “Come home now.”
We sat on our porch bench for hours, hugging, crying, and even laughing from time to time at the absurdity of this moment. The truth is, despite our son’s delayed development and our ongoing concerns, we never imagined this diagnosis either. But here we were, faced with the reality that our lives would never be the same.
I fought the pain and anger and tried to make way for the joy of a third child soon to be born. How could I be happy again if I knew our second child would suffer and our dreams of creating the family we had imagined would crumble?
So I did what all humans are biologically predisposed to do: I avoided pain at all costs. I immersed myself in work, buying clothes for the newborn, household projects…anything I could find to keep my mind from being too still to let in the truest thoughts. I did what humans do best: distract and evade.
However, as expected, this didn’t work. I found myself withdrawing more and more, no longer wanting to socialize with friends and automatically taking care of raising my children. And most frustratingly, well-meaning people, like this one I met at the grocery store, made the pain worse. I always felt empty and left out when I left.
He suspected it was because he was tired of feigning politeness, accepting their good wishes while trying to make them feel better. Until that day, I had a revelation that hit me even harder than the pain inside me: If she couldn’t even imagine my pain, how could she accept that it was real?
It wasn’t the only well-intentioned condolence that wasn’t well received. Others included the backhanded compliment (“God only gives these challenges to those who are spiritually strong”), toxic positivity (“At least your other two children are healthy”), and worst of all: complete avoidance.
I had good friends and even family who ignored me. But my angry comments were only in my head; I was too afraid of offending anyone. Even when people told me, “I can’t imagine that,” I wanted to lash out at them. I thought, “Well, it must be nice not to have to do that.”
However, I couldn’t understand now how I had missed the nuances of why that sentence struck a chord with me. To exist beyond a person’s imagination is to feel deeply isolated. If you cannot imagine or see, if you are in a spiritual elite of nightmarish tragedies, where does that leave you? Only.
Around the same time, a mentor encouraged me to “practice gratitude,” which I honestly found offensive. But eventually I accepted his challenge; In any case, nothing else worked. To show my gratitude, she asked me to go to my son’s bedside every night after he fell asleep and say “thank you.” For this life. For him.
At first I pretended. I felt my body tense as I asked myself to accept that this diagnosis and the future it held for me was real. Yes, even I didn’t want to imagine it. Until I gradually felt that my body was becoming softer, that the tears flowed more easily and that I had less resistance to exercise. Something about saying “thank you” made me turn toward my life instead of away from it.
And now here I was again, receiving a similar message: that avoiding pain was not an answer to the grief I had overcome, or at least not a solution that worked for me.
People said my life was unimaginable, perhaps insurmountable. But perhaps surviving that kind of sadness was also about imagining that life as worth living. It wasn’t easy to see our circumstances like that, and it didn’t happen quickly. But with the help of this mentor, I began the slow and steady path back to my pain and grief.
On the one hand, I practiced more gratitude for my own life and saw all the indestructible goodness that lies right next to what is very difficult. Even now, years later, as my son is in the final stages of this brutal illness, I lay him in his bed and consider the way he looks at me lovingly as a gift. Nothing gets easier, but I find it easier to endure the difficult.
And I have changed the way I respond to those who suffer, choosing to welcome them rather than reject them. Instead of saying, “I can’t imagine that,” I can just say, “That sounds really difficult.” Or I offer them a human truth: “I don’t know what to say, but I’m here with you.”
I even had the energy to confront some close people in my life who had completely avoided my son’s diagnosis or simply stopped calling me. Everyone had the same version of the excuse: “I just didn’t know what to say.”
How about a simple “I love you,” I told them.
Over time, it became clearer that my sense of belonging and connection was directly related to overcoming my grief and even regaining my joy. I soon began to react differently to the situation with my friend in the supermarket. Instead of just reassuring my well-wishers, I tried to connect with them. Instead of smiling at her, I encouraged her to use her imagination as a bridge to me and my life.
“I want you to try to imagine my pain,” I tell them now. “Not because our pain is the same, but because the idea of it connects you to me and perhaps even more deeply to your own pain.”
This usually results in a stunned look, followed by an awkward silence that lasts so long that you have to take a hard stance each time before trying again. But in the end a conversation usually begins in which we come up with something better than retreating to our separate islands of pity and pain. And I’m grateful for that.
I think my new answer is more loving and generous than the polite ones I gave before. It opens us up rather than closing us down, it encourages us to see ourselves and imagine a life different from our own. Plus, when I walk away, I feel closer to them, not less, and even closer to my own pain.
I feel like I belong here, not because my pain is the same as everyone else’s. Not because it’s a blessing. Not because I am able to “practice gratitude.” I belong – everyone belongs – because we all have pain and connecting with the pain of others humanizes us. Even, dare I say it, happier.
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