Taking pleasure in the ‘normal’ activities we can still do
Visits with friends, movies, and games make an impact on our lives with ALS
Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.”
The piece resonated with me because I’ve been living with chronic stress and uncertainty for more than 14 years since my husband, Todd, was diagnosed with ALS. Our typically mundane life, especially now that Todd is homebound, is punctuated by intense moments, such as when our breakfast was interrupted yesterday after Todd aspirated on coffee. Then he struggled to breathe until I helped him with a manual assist cough.
But we found a couple coping mechanisms last week that made us feel the sort of normal those Ukrainian women have experienced.
Visit with old friends
Last weekend, one of Todd’s childhood friends visited us with his family. Virtually none of the conversation was about ALS, except when Todd asked his friend to help clear his lungs with a manual assist cough.
Other than that, we caught up on one another’s lives, talked about our daughter’s college plans, and listened to Todd and his friend reminisce. And they cooked us dinner, giving us a rare treat of someone else’s home cooking.
Family movie night
Last Friday evening, we had a family movie night. For years I’d been suggesting that we watch “Sully,” with Tom Hanks’ masterly performance as Capt. Chesley “Sully” Sullenberger and the water landing of US Airways Flight 1549 on the Hudson River after birds took out both engines.
Our two kids had repeatedly vetoed my suggestion until last week. I thought they would enjoy it, and I was right.
My eyes filled with tears when the passengers panicked as the plane filled with water and they scrambled to the emergency exits at the front of the plane.
“Are you enjoying this, Mom?” my daughter asked.
“Yes,” I said. “It’s not my stress, and it has a happy ending.”
Escaping into other people’s stories takes me out of our life with ALS.
Game night with friends
A few friends from church had visited us earlier last week for a game night. We suggested Scrabble. It’s an easy game to make accessible for Todd; we simply have someone place his letters for him. He doesn’t have the ability to move his tiles around on his tray, but over the years he’s become skilled at manipulating letters in his head to make words.
Todd and I have played a lot of Scrabble with each of our immediate families over the years, and we’re pretty competitive. We offered our strategy to our friends, who haven’t played as much. “It’s more about where you place the letters than it is about making long words,” Todd explained.
One of our house rules is that everyone can refer to a list of two-letter words, making it easier to hook on to words on the board by placing one word alongside another. We also explained that, as the game prescribes, using all seven tiles in one turn is a bingo and earns an extra 50 points.
Our friends are pretty good at strategy games, so they caught on quickly. On his second turn, one of our friends played HAZE on a triple word score, laying the E above an F. He scored 57 points on that turn and surged ahead.
I climbed back to a close second place by consistently finding decent-scoring words. As we were running out of tiles, Todd and our other friends trailed behind.
After one of our friends pulled the last tiles out of the bag, we explained that the game ends when someone runs out of tiles. When that happens, the player gets all of the points from the other players’ unused tiles.
When Todd’s turn came around, he asked me to move a few of his letters around on his tray. I was wondering if he was trying to bingo. He usually only asks for help when he’s close.
Using a blank, Todd played the word REMAINS with the R at the end of OWE. “I don’t think OWER is a word,” I said. “I’m going to challenge it.” I was right, and he lost his turn.
After we went around the board one more time, Todd played STEAMIER, a bingo for 68 points. And he’d used all his tiles, collecting 34 points from the unused ones the rest of us were holding.
Todd won.
It was an exciting finish, and I’m always happy when Todd crushes the rest of us at Scrabble because I know ALS hasn’t affected his cognitive abilities.
It’s such moments of normalcy that help us cope.
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 rovider 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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