ALS both magnifies and steals joy from everyday moments
Even ordinary pleasures are accompanied by the weight of this disease
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and homebound due to ALS.
Fortunately, Todd would be able to watch the game, I thought, because our son’s team was playing at a rival’s field, where they livestream their games.
I started Todd’s noninvasive ventilator and adjusted his nasal pillows so that he’d be comfortable. I taped his reading glasses to his forehead.
“I’ll be less than 10 minutes away,” I told him. “Text me if you need me.”
He was optimistic that he wouldn’t need help, because he said the last clearing seemed to get all of the mucus out of his lungs.
Before leaving, I got rid of a few black flies in his office and sent Todd a text with the livestream link.
At the game, I settled onto a bench near my mother and a couple other moms I’ve known since we moved to the area more than a decade ago. Our sons have grown up together.
The game started and I took a picture of the roster and emailed it to Todd so he would know the players’ numbers. “Emailed roster,” I texted him.
“No livestream yet,” he replied, sending me a picture of the website announcing a delay.
“Bummer,” I wrote, turning my attention to the game. At the end of the first quarter, I checked in with Todd via text: “End of first quarter. 0-0. Did the link ever work?”
“No,” he replied.
“Is your breathing OK?” I asked, sending him a picture of my view of the field.
Columnist Kristin Neva’s view of her son’s junior varsity football game. (Photo by Kristin Neva)
“Maybe come up at halftime,” Todd replied. “Lungs are filling up, glasses are sliding down, and a fly has literally landed inside my ear and taken up residency. It has been there for 10 minutes.”
I was aghast at the list of problems. He should have texted sooner. I shared Todd’s text with my mom. “I’m going to run home to help him,” I said.
“I’ll go,” she said.
I texted Todd to let him know that help was on the way.
My mother left, and a short time later, probably just moments before she arrived, I got another text from Todd about the fly: “He left! Just now. That was 20 minutes.”
I’m amazed by his patience. If I had a bug in my ear for that long, I’d be more upset than he was. At halftime, I checked in to make sure everything was all right.
“I’m OK,” he replied. “Your mom cleared lungs. Fly is gone. She is fixing glasses with tape. Score?”
“8-0.”
I engaged in conversation with my friends and asked a friend’s daughter, a recent college graduate, about her new job. I enjoyed hearing about it. I live vicariously through young adults whose dreams haven’t yet been shattered by the hard realities of the world.
Another mom and I talked about our teenage sons who were both on the field. We marveled at how fast they’ve grown up.
The football game had several exciting moments, such as when one of our players caught the ball and was able to run half of the field into the end zone, but the play got called back due to a penalty. My son did some good blocking, and his team won 8-0. Best of all, no one was injured.
It was unseasonably warm — a perfect fall night for a football game and conversations with friends. On one hand, I embraced the joy of the moment.
On the other hand, my husband was stuck at home. The livestream didn’t work, a fly had crawled into his ear, and his lungs had filled with mucus, making it hard for him to breathe.
ALS robs joy from many moments in life, even as it magnifies the beauty we still find.
I wish moments like my son’s football games didn’t have to be a mix of light and dark. I find joy in ordinary pleasures, but the weight of life with ALS never really leaves. We just keep going, balancing the joy and sorrow as best we can.
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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