Perspective can be hard to come by with ALS, but writing has helped me keep my head above water.
I’ve kept a journal since I was a kid. I wrote my way through teenage angst, my musings during my college years, the challenges of trying to help the teens I mentored, and my romance with Todd.
After we got married, I found myself journaling less. Rather than working out life’s complexities on paper, I talked through them with him — until his diagnosis.
Todd and I did cry and talk with each other, but we dealt with his terminal illness differently, and so we also did much processing apart. Todd wrote some of his thoughts in blog entries to keep our friends and family updated, and I turned back to pen and paper.
We share some of our writings in our memoir, “Heavy,” which tells the story of our first year with ALS. Each chapter begins with a story by Todd and ends with one of my journal entries. Todd comes to a point of acceptance sooner, even while I search for alternative therapies.
Todd cries, “Why God?” after his diagnosis, and then a couple chapters later, he seemed to resolve it by thinking, “Why not me?” He doesn’t wrestle with faith like I do.
Some things that took him weeks or months to process still feel unresolved for me.
Our grief is mutual, but it is also individual.
For a decade now, I’ve filled journal after journal.
In her book “Emotional Agility,” Susan David discusses the value of journaling. She processed the death of her father when she was a teenager through writing. She cites research studies that found that people who wrote about emotionally charged episodes experienced a marked increase in their physical and mental well-being.
David writes, “Showing up and applying words to emotions is a tremendously helpful way to deal with stress, anxiety, and loss.” She says that those who thrive the most began to gain perspective through writing by using phrases such as “I have learned,” “I now realize,” and “I understand.”
I don’t write every day, rather, mostly when I feel the need to vent.
I perused my journal entries from the last month. After journaling about some frustrations one morning, I wrote a second entry for the day. “As angst-filled as I was this morning, I had an OK day.” I then listed highlights of the day.
Looking back at those entries and seeing that I’m coping gives me perspective.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
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