Evelyn Skye on How to Find Joy in Writing through Hard Times

The small moments you carve out for yourself matter

Author Evelyn Skye and her husband, Tom, in 2019

I first met

Evelyn Skye

in the comments section here on Beyond. We began exchanging emails and instantly felt like we’d known each other forever. Evelyn has a generous sensitivity to both the beauty and hardship of life that feels comfortable to me. And she’s funny, kind, and smart.

Evelyn is also a gifted writer and New York Times bestselling author of many books, including The Hundred Loves of Juliet (which you’ll learn more about in her essay!) and One Year Ago in Spain (out this summer). She writes for children, teens, and adults. Recently, Evelyn collaborated with Netflix on their groundbreaking literary/filmmaking project, Damsel, which stars Millie Bobby Brown, Angela Bassett, and Robin Wright. On top of all that, Evelyn writes

Wordplay with Evelyn Skye

, a behind the scenes look at writing as a career.

Evelyn lives in the San Francisco Bay Area with her husband and daughter.

I think you’ll really enjoy this essay! I’m excited to hear your thoughts in the comments!

xJane

How to Find Joy in Writing through Hard Times

In 2019, my husband Tom was diagnosed with a rare, incurable disease. At only 39, he had idiopathic pulmonary fibrosis, caused by a genetic mutation that has been identified in only three other people in the world. His lungs were turning into something like stone, the cells unable to process oxygen. Breathing felt increasingly like suffocating, a little more each day.

We had only been married for eight months. I was on book tour when he received the horrible news that he was probably going to die. But Tom didn’t tell me until I came home from tour, because—true to his endlessly generous way of loving me—he wanted me to enjoy the fruits of my hard work.

Around the same time, his brother Ryan was diagnosed with Stage 4 liver cancer. He was only 36, and he dreamed of being a novelist some day.

I don’t need to tell you we cried ourselves an ocean of our own sorrow.

But this is not an essay about sadness. It’s actually about joy. About how writing my feelings into fictional characters took some of the heavy weight of reality off me and passed it onto imaginary friends who could help carry the burden.

In a recent study published in the International Journal of Clinical and Health Psychology researchers discovered that the people who continue doing things that are meaningful to them come out of periods of trauma better off. In fact, by making space in hard times for themselves—even if just tiny snippets of time—those participants actually experienced post-traumatic growth. This study was done during the Covid pandemic, but the results can be applied to any of us going through hard times.

The study found that what mattered was doing something that held meaning for that specific person. For some, it was knitting blankets for their grandchildren. For others, it was gardening. And for creatives, it meant engaging in their art, be it writing, painting, taking ten minutes each day to sketch a landscape… anything. As long as it mattered to them.

I didn’t realize this was what I was doing as I carved out time in hospital rooms to work on a new novel. The story was about a man who creates magic wherever he goes, who manages to take ordinary life and blow it up into a jaw-dropping, Cirque du Soleil-type version of itself.

It was inspired by Tom, who had always lived life curiously, as if every moment contained a wonder to discover. When I met him, do you know what the storage unit of his apartment contained? A ukulele because he heard someone else playing and thought, I would love to fill my life with that kind of happy melody. A badminton set, a huge mesh bag full of volleyballs, and a frisbee (from his ultimate frisbee days fifteen years prior at Stanford), because who knew when someone might want to play a game? There was a radio-controlled car he was taking apart because he wanted to see how it worked. Parts for a robot he was building. And don’t get me started on his giant size-12 shoebox full of free sunglasses of all colors, which he had collected over the years at music festivals. You never knew when you’d need a set of purple shades with a plastic mustache attached.

All this, I poured into the novel I wrote at his bedside when Tom moved into the hospital to wait for his lungs to further degenerate, to hope for an organ donor match.

Of course, when it was just Tom and me and the rhythmic beeping of all the hospital machines, we would talk, because by then he was confined to his bed and there wasn't much else he could do. We would dream up plans for a future we weren't sure he would have--a trip to Hawaii! A safari! We would joke about how crappy the current situation was (he ordered a poop emoji-shaped hat from Amazon). My job was to be there and love him, and so I did. Fiercely. Immensely.

But there were also times when they had to take him away for tests, or when I'd have to leave the room so they could do a procedure there. And in those moments, I wrote.

I wrote snippets between doctors checking in, respiratory therapists fiddling with the high-flow oxygen, nurses administering too many medicines.

I wrote at two in the morning while he was in surgery for ECMO, a machine that took all the blood out of his body and re-oxygenated it before pumping it back into him, because by then his lungs had completely stopped working.

I wrote when we received word of a donor match, and I wrote after the doctors gave us the devastating news that the donor lungs were too boggy, that they didn’t qualify for a transplant.

The chapters I wrote were not good (although, at the time, I thought they were). But what mattered was the doing. Writing not only helped me escape reality for fifteen or thirty minutes at a time, but it also kept me connected to something I loved, an activity that was meaningful for me.

It’s easy to feel guilty for taking time for yourself in the middle of hardship. It’s difficult to believe that you deserve even brief sparks of joy when others are suffering. But the truth is, those small moments rejuvenate your soul, and then your heart is more able to give love and care when the people you love need it.

Sadly, we lost Tom’s brother to the cancer. But Ryan knew I was writing the whole time he was sick, and he wouldn’t have wanted me to do anything else. I was writing in part for him, because he couldn’t. And I was writing in part for me, because I needed it.

Tom did receive another organ match and had his double lung transplant in September of 2019, just three days before his birthday. We celebrated his fortieth in the ICU, with apple juice and chocolate pudding and a pirate hat, because, well, it was Tom, and he wasn’t going to let a day of his second chance at life go by without a swing at some joy.

And just like the International Journal of Clinical and Health Psychology study showed, I came out of our darkest period, stronger, with a new perspective on what it means to live and to love. Life may not be a fairy tale, but you can learn to find the moments of joy in them that are uniquely yours—and even to create more.

I did have to set aside that manuscript I wrote because honestly, it was terrible. But there were some really beautiful and insightful emotional nuggets in there, which I mined for a new book idea.

That book was about Juliet, reincarnated, and Romeo, who is lost in time. Across centuries, he finds her over and over again, but always has to watch her die. Fast-forward to present day, when he meets a version of Juliet who teaches him how to stop focusing on the fears of the past… and how to live with hope and to find happily-ever-after in even the smallest slivers of time.

That novel is The Hundred Loves of Juliet, which was published last year. This is the dedication I wrote:

To Tom—

This book is my love letter to you.

To us.

When we read the story together, we cried an ocean of tears. But this time, Tom was healthy, so our tears were not of sorrow, but of love and hope.

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