To Truly Live

More than just surviving

Tom has always loved me, and I have loved him. In that context, we could disagree, poke fun, and roll our eyes at each other from time to time.

Tom liked to make fun of some of the movies I enjoyed—the ones in the genre of “terrible medical tragedies.” One documentary was co-produced by a woman who had recovered from a stroke. She guided the producers and actors in simulating life before, during, and after a stroke. It was so real and disturbing, but it gave me such empathy for stroke victims and survivors. Tom thought I was a little deranged for liking something like that.

Then there was the documentary about a man who was hiking alone and got his arm wedged between two boulders. He had to drink his own urine to stay alive and, not only that, he had to amputate his arm so he could free himself from the rocks. Then he put on a tourniquet and ran for help. He survived. Again, Tom howled in disgust that I could spend my time watching such a story.

One of the very best movies of this type impressed me so deeply that when I was hit with Tom’s medical tragedy, it came to mind again and again, encouraging me to find creative ways to make our life more lovely. The movie Breathe tells the true story of Robin Cavendish who becomes paralyzed from the neck down and can only breathe with a respirator. He faces a lifetime in a hospital bed because, at the time (the 1950s), there was no safe way to transport someone with a portable respirator. His wife, Diana, is resourceful and thinks outside the box, and with the help of friends and a few supportive medical staff, she finds a way to free her husband from institutional life.

Throughout the movie, she and her husband take serious risks in order to make his life more livable and joyful. She has to fight hard for his freedom and for a life that still holds meaning. Little did I know that one day I would be given the chance to make my husband’s disabled life one that still holds joy, laughter, and hope—just as she did.

During the one month Tom was in the ICU and the four months in rehabs and assisted living, I wondered what life would be like once we got home. Tom was in such poor shape after his brainstem surgery that I wasn’t sure I’d ever be able to care for him on my own, though I was determined to try.

I am grateful my family encouraged me to get an apartment, since our split-foyer house could not accommodate a wheelchair and the bathrooms were too narrow for safe transfers to the toilet and tub. Moving into a wheelchair accessible apartment with a balcony overlooking trees and a nature path was key to our healing.

For me, I have tried to balance my own needs—to be a happy, healthy caregiver—with Tom’s needs as he recovers from a very invasive brainstem surgery. I want to share some of these things because I think the basic principle is helpful to anyone.

• I make jokes with Tom—just as I did before. And he laughs. Laughter is such good medicine.

• I buy fresh flowers from Trader Joe’s. They remind me that in our marred life, there is still extravagant beauty—like the beauty of a brightly colored bouquet.

• We do the things we used to enjoy. Simple things. Going to the grocery store together. Going to Mass together. Listening to a podcast and talking about it. Talking about our children. Watching a reality show or a series we like. Showing affection—holding hands, giving a kiss, or holding the hug just a little bit longer.

• We have date nights with couples we enjoy—low-key fun.

• We have dinners with our kids and grandkids.

• We listen to favorite songs. Sometimes Tom will try to sing along, and I dance for him.

These are the things that make our life feel less like a tragedy and more like a gift. I don’t blame Tom for mocking those tragic medical movies I love so much. But I can say for sure—he has benefited from my having watched them.

Robin Cavendish, “I don’t want to just survive. I want to truly live.”