Dear Susu #7: Lighting the Way

“What mantra do you have for when times are hard?”

Hi friend,

Today I have a special community-wide installment of Dear Susu. I’m sending it out a little early because timing is of the essence. Recently I got a letter from a member of our community—from a mother facing a familiar uncertainty. More than a question, she had a very special favor to ask for her eight-year old-son, who is in his fifth year of treatment for leukemia and is undergoing his second bone marrow transplant this week. She’s given her permission for me to share her letter with you. I’m hoping you can help me gather some words of wisdom to help light their way.

Much love, and please read on—

Suleika

Image by Bianca Bagnarelli for the NYT Book Review

Dear Susu,

I find myself in uncertain territory, yet incredibly familiar at the same time. We have been trying for many months to help our son fight leukemia again and get him to a second bone marrow transplant. We’ve tried different rounds of chemo, including a clinical trial thousands of miles from home. We aren’t in remission, but we are close. We are so very close.

I never thought I would pray for a transplant, especially after the painful experience of the first. Yet knowing it’s his best chance of survival against this aggressive disease, that this might be the closest we can get to cure, we have to take whatever chance we can. We don’t want to regret doing nothing, when we could have done something.

Suleika, I wanted to ask more of a favor instead of a question. When my son was three and first diagnosed with leukemia, I painted a quote on his wall: “Always remember, you are braver than you believe, stronger than you seem, and loved more than you know.” I think it’s from Peter Rabbit, or possibly Winnie the Pooh—in any case, he’s outgrown it. He’s eight now and I wanted to say something new, something inspiring.

You and the community of Isolation Journals writers have such profound mastery with words—always comforting, relatable, and inspiring. If you were to put a collection of words on a wall for an eight-year-old boy heading into his second transplant, what might you say? What could I possibly say that would transform his walls into a place of comfort, a mantra for finding joy despite excruciating circumstances? What mantra do you have for when times are hard?

Many thanks for listening. May you find your way through the unknown until you are well again. Light the way for us, for we are not far behind you...

Warmly,

Lightseeker

Dear Lightseeker,

There are so many things that resonate about your situation—from finding yourself in uncertain yet familiar territory, to praying for a second bone marrow transplant you thought you’d never want, to seeking out words of solace and strength from others. Over the last decade, books and essays and poems have saved me countless times. I have jotted meaningful phrases in my journal and returned to them again and again. They are little points of light that I have followed through the wilderness. It’s a beautiful impulse to want to give that to your son.

As you mention, there is a whole community here—more than 100,000 in all—with experience and wisdom borne of it.

And so, dear community, I’d like to turn Lightseeker’s question to you:

What words of wisdom have gotten you through the unimaginable? What has allowed you to find joy even in the most difficult circumstances? What can you share to help illuminate the way—for Lightseeker, for her son, and for any others who might need it?

You’ll find mine below. I’d love for you to drop yours in the comments.

Sending love,
Susu

Image by Charlie Mackesy