In living with ALS, I’m OK and not OK
The difference in seeing my daughter onstage and assisting another cough
In the opening stanza of “For When People Ask,” poet Rosemerry Wahtola Trommer writes:
“I want a word that means
okay and not okay,
more than that: a word that means
devastated and stunned with joy.
I want the word that says
I feel it all all at once.”
Wahtola Trommer’s poem resonates with me, because when I run into someone I know, they often ask, “How are you?” Or a store clerk whom I don’t even know offers the mindless pleasantry, but it’s still a question with a punch.
“I’m OK,” I say, because it’s often not the time or place to get into the nuances of how I’m doing.
I haven’t been really OK since my husband, Todd, was diagnosed with ALS nearly 15 years ago.
Joyful sorrow
I’m not OK because my husband struggles to cough and breathe, and I run to clear his lungs with a manual assist cough multiple times a week. I’m not OK that our healthcare system provides little help, and so much falls on me.
I’m surviving. Somehow I’m still going, but I wouldn’t say I’m OK.
And yet sometimes I am OK. Today, I worked on a house project, touching up gaps around the white baseboard trim in our kitchen and hall with matching wood filler. That’s a task I hadn’t gotten to, even though we’ve lived here for 12 years. The result of my labor is such an improvement, and now I admire my work when I walk by, thinking I should tackle some more rooms. When I find pleasure in ordinary things, such as beautifying our home, I’m OK.
Last weekend, I hired a caregiver for Todd, and my son and I drove two hours to see my daughter perform in a college musical. Todd was disappointed he couldn’t see it because it’s too hard for him to leave our home with his compromised breathing and weak neck. I missed him being there with me, sharing the experience. But when I saw my daughter onstage and I felt such joy seeing her in her element, I was OK.
When Todd and I watch a movie or work our way through a TV series, I get engrossed in the story. We analyze the character development. When my mind isn’t on ALS, I’m OK.
When people ask how I’m doing, the real answer is that I’m OK and not OK. It’s why I named my column “Joyful Sorrow.”
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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