We Can’t Get Past Stress When We’re Still Facing It
An old friend stopped by with a gift of homegrown microgreens. She’s a retired nurse, and she used to help with nighttime care for my husband, Todd, who has ALS. She visited for a while, and we updated her on Todd’s health and decline in lung strength. I matter-of-factly shared the story of a scary incident we went through a couple months ago when he stopped breathing. At one point, Todd and I even laughed at the absurdity of it.
Our friend left, and I felt drained. Later, after feeding Todd a sandwich with pea sprouts, I cried, releasing stress. Retelling the story had brought me back to the emotion of that day.
“It’s OK,” Todd told me, “it’s over.”
I cried harder. “But it’s not,” I said. “It’s not over.”
I asked Todd how he is feeling about the incident.
“I don’t know. I try not to think about it,” he replied.
People often ask how Todd and I are doing, and I’ve shared what we went through with a number of friends. I want people to know how he is and what life with ALS is really like. I keep thinking that talking about what we went through would help me process the incident and put it to rest.
Much of what I have read about coping with traumatic stress assumes one is on the other side of a stressful event. But with ALS, we can’t regain a sense of safety and security when Todd’s health is so precarious. Instead, we live with ongoing uncertainty.
Most mornings, Todd wakes me between 6 and 7 a.m. — an hour or so after his nighttime caregiver leaves — to scratch an itch, adjust his ventilator mask, or turn him over in bed. On the rare occasion when I wake before him, I have a sense of dread. I cross the hallway to his bedroom, and with relief I see his chest rise and fall to the rhythmic whirring sound of the noninvasive ventilator. He’s still breathing.
We can hold off the ALS tiger only so long. The ventilator is a weapon that buys us time. We don’t know if that is days, months, or years. I don’t know if I will come into the room to find him already gone, or if it will be a long slow decline at his bedside. But it’s coming.
Life doesn’t feel safe.
I’ve kept a journal since I was a teenager, articulating my thoughts and processing my feelings. But now I’m trying not to think so much about what we’ve been through or where we are headed. I don’t know how helpful trying to process everything is at this point. We can’t get past stress when we’re still in stress. Maybe a little denial or delusion is more useful when living with ALS.
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.