Over the past few holidays as we’ve navigated the choppy waters of my husband’s terminal illness, I’ve discovered a surprising-yet-essential tool for processing through pain: the ordinary ink pen (or computer keyboard).
I’ve always kept journals faithfully, but in the first days of Steve’s ALS diagnosis, I stopped writing. I don’t know all the reasons why, but I believe much of it was because I felt this journey was so dark and difficult that I would not want any reminders of it down the road. The ground we were traveling felt too sacred and tender to document.
Needing an Escape Hatch
Quickly, however, I began to feel desperate. I needed an escape hatch for the feelings that were trapped inside my hurting heart. Fears for the future circled around my thoughts, waiting to land somewhere and I wasn’t ready to give voice to them. I didn’t want to share them with friends; they were too new and untested. I knew some of what I was feeling would change as our situation changed, so I kept trying to stuff the storm of emotions deeper down, worried about when and where they might leak out.
Finally, during our first holiday season post-diagnosis, I returned to the safety of my journal. I opened my laptop and began to write it all. Hurts, heartache, fear, frustrations… everything. I wrote about how I felt like the only sad person in a world of happy, hopeful people. I wrote about long-held dreams that seemed to be dying quick, painful deaths.
And somewhere along the writing road, I decided to share some of the words on my blog.
A Community of Support
I cautiously offered my honest thoughts to the watching world, hoping they would understand. And they did. The community that formed on my blog became a constant source of encouragement and support for me. People I’ve never met became dear friends as they followed our story and let our family into their hearts.
The community that formed on my blog became a constant source of encouragement and support for me.
Going public with Steve’s journey also gave us a good way to keep those who love him included and updated on his condition, without feeling they needed to ask us awkward questions.
One of the Most Important Decisions I’ve Made
Choosing to write our story as it unfolds has been one of the most important decisions I’ve made. Even if you don’t consider yourself a writer, I encourage you to take a little time each week to record your feelings in a journal or to start a personal CaringBridge website.
Putting words around the things you’re experiencing and feeling will not be easy, but it will be cathartic and perhaps years from now, you or someone you love will read the story and be amazed at how well you lived it. May your days be filled with hope.