When Fear Gives Way
“How are things going?” a friend asked.
I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want to go in for testing.
“That’s terrifying,” she empathized.
I considered the descriptor. I have a lot of unpleasant emotions, but fear isn’t usually one of them. When Todd was diagnosed in 2010, I had overwhelming anxiety, but I don’t anymore.
Have I become numb? Perhaps. Uncertainty has become normal. I carry low-grade, nagging sadness. But I don’t feel fear.
Perhaps I am suppressing that emotion, or maybe fear gave way to weariness and resignation. What will be, will be.
An incident from last spring has stayed with me. I was driving my kids to school when I saw an accident scene ahead of me. Police lights were flashing where two cars had collided. I knew the teenage driver who had been on her way to school with her younger brothers. I pulled onto a side street and quickly walked over to them. “I’m a friend of the family,” I told the police officer. The kids seemed OK, although the driver was understandably shaken. I waited with them until their mom arrived. “Do you want me to take your boys to school?” I asked her.
“No. We’ll go home and make sure everyone’s all right,” she said.
Oh, right. Of course they wouldn’t be heading straight to school.
When something traumatic happens, normal people take time to process it. I am used to just pressing on. I give Todd the Heimlich maneuver at the dinner table, and then we continue on with conversation as though we hadn’t just experienced a life-threatening event. Is that warped?
Another incident also has stayed with me, from 20 years ago when I coordinated a tutoring program in Milwaukee’s inner city. Our staff was picking up kids from the neighborhood, and a boy with a gun tried to get on the bus. A teenage staff member, a girl who lived in the neighborhood, pushed him off and the bus driver sped away. It seemed like a terrifying situation, but the girl didn’t seem that shaken. She had grown up navigating through situations no kid should have to experience.
I may not be done with fear. I don’t know our future or how I will react to what lies ahead. Somehow, we keep going.
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About the Author
Terrence D. Roth
Kristin, I am always impressed with how real you write. I too operated very much like you've had to . . . I haven't had to do that in just over a year now, but this disease redefines us, or forces us to become much stronger and focused than, at least I once thought possible. My thoughts and prayers are with you, Todd, and your amazing family! Nobody owns tomorrow and Todd remains with you!
Much love,
Terry
DEB BOWYER
Hi Kristin, I lost my sweet husband, age 57, to ALS this year. He had Bulbar onset so he only lived three years since his first symptoms appeared :*( and one of the first things to go downhill was his breathing, so he began using a noninvasive bi-pap machine (AirSense by ResMed). In the beginning, he only used it at night and was resistant to using it during the day, especially in front of friends, but as time went on, he needed it more and more, and his neurologist & his respiratory therapist both said the more he used it the longer he would live. So I lovingly encouraged him to use it more often and told him that his friends and family loved him so much and wanted him to breathe more comfortably and to stay with us all for as long as possible, so they would understand that he needed to use the machine. He finally agreed and I know he lived longer because of it. Hope this helps you with your husband. I know how stubborn men can be.
I have enjoyed your blog posts. Thank you for keeping it real.
Hugs,
Deb
Laurie
My husband is in complete denial since he was diagnosed in March of 2020. He also has Myasthenia Gravis and will accept medication and IVIG treatments for the MG but I see him declining. It is so frustrating and I don't know what to expect. I want to get our home handicapped accessible but he keeps telling me he won't get worse. I don't know if I should just go forward and ignore him or respect his denial. I need help...
Wendy Winkler
Hi Kristin, I have been enjoying your columns for some time now. Sadly my husband passed away from ALS earlier this year. My husband was also resistant to non-invasive ventilation but accepted it when we found out that it was important for him to be able to clear the C02 from his body. We also found out that early use of a BiPap machine is actually helpful for an ALS patient. I know it is a further decline and another loss, but it is a helpful tool to make life as good as it can be.