I’m Grateful for my CaringBridge Community, and Always Will Be

In February 2017, at age 32, I was diagnosed with a glioblastoma. Other than a few strange weeks right before my MRI that found the brain tumor, I had no idea anything was wrong. We had just settled into our newly renovated house, having just moved to Seattle. I had just handed in the manuscript for my third cookbook, a very ambitious project, so I thought that the house renovation, combined with raising an infant (did I mention we moved with a two-week-old?) and my writing a book, gave me headaches.

Tidal Wave of Newness

I had no idea of the extent to which I was suffering, but the MRI was a flashing sign for my attention, like a flare went up that will forever divide my life into a “before” and “after.”

In the rush of appointments in the days that followed—doctors were eager to remove the tumor, despite not thinking it was cancerous at the time, because of its size and location–I was swept in a tidal wave of newness and discovery, drowning. My aunt sent me a link to CaringBridge, saying that it was a helpful way to disseminate information.

That token suggestion, swimming among the sea of overwhelm, was a lifeboat. I clung to it immediately, focusing all my energy on funneling my thoughts and feelings into a single outlet that my family and friends could visit if they wanted to know what was going on inside our house and my body as the story unfolded. The progression of my diagnosis made us all passengers, my whole family, huddled together on a raging sea, comforted only by the boat we each held on to for stability and safety.

CaringBridge as a Lifeboat

After my tumor was removed and discovered to be cancerous, my CaringBridge page shifted dramatically in response to my intent in writing there. It shifted from a space in which I sent out news of this strange experience I expected to survive, a form of curious documentary, to a space that might very well hold some of my last words.

The surgery, my surgeon insisted, was not curative. Glioblastomas have a 100 percent recurrence rate over time, most often within one year of discovery.  I processed that news and felt like the walking dead. My first instinct was to back away from anything that wasn’t here and now, anything that took me away from my kids. I decided to remove myself from social media. Except for my CaringBridge site.

Healing Effects of Writing

I was given a year to live; I had two young sons. I had to do something that made me feel less like a patient, that took me to a place where cancer couldn’t touch, that preserved my thoughts for my sons who might not know me. So I wrote.

I imagined questions my sons might have had for me someday, ways they wish they knew what I was thinking, and in writing them down, it healed me, like I was mothering them in advance, like my timeline didn’t matter anymore.

Everyone I knew, and many I didn’t, were reading my most vulnerable thoughts every day and sending me their love, like they were with me in every moment regardless of time, personal history or geography. That healed me, too.

Writing was also a way to answer questions without responding directly to the almost constant flow of emails and texts about my health. Plus, CaringBridge is designed to pour support into the sick person, without expecting reciprocation.

‘All I Wanted was a Hug’

Here’s the thing about a diagnosis like mine: People want to give you space, but all I wanted was a hug. It was on CaringBridge that I found the support that I’d been missing elsewhere online.

It provided me intimacy through writing honestly from my point of view and having it recognized by my community through comments, but I also had the distance and ease of posting online.

I felt as if I was giving my family and friends more, too. This wasn’t just a photo with a caption; it was a long-form essay. By sharing what were basically personal journal entries with everyone I knew, I gave my family and friends a clear image of what I was thinking and feeling in that moment.

Two Books; Countless Connections

I vowed to turn my CaringBridge posts into a self-published memoir for my boys, which I did just after surviving that year of my treatment. It’s called The Caring Bridge Project. Then I wrote another, one to care for them now as little boys, which journeyed to be published with Random House in New York after being loved by bereaving children in Seattle. It’s called Lasting Love, a fitting title. Both books connected my experience to others, bringing my story from the conduit of my computer keys into the homes and hearts of people who, just like me, need hope to survive.

I am here now, nearing a full year after the one my doctors claimed would be my last, with completely cancer-free scans. Living now is as surreal as being told I was dying then, both unexpected and unexplained. But I’m here. And grateful to CaringBridge for being my lifeboat, for giving me a way to create hope for myself, to build strength and community. It helped me navigate across a sea of uncertainty to the distant shores of a miracle.

Start a CaringBridge Site

When you’re going through a health journey, you have a lot on your plate. CaringBridge replaces the time-consuming task of sharing your health news over and over. It’s a free, easy to use online journal for sharing health information with your family and friends.  

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