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.
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Michael E Hoppe
Kristen,
I've walked this path before you and thank you for sharing . My daughter found your site and would send me your thoughts. Don't ever think I had a dry eye after reading as I knew exactly what you were going thru. My wife went to Glory on the 23rd of Feb 2022. Bittersweet is the best I can describe it. Happy she is no longer in that prison suffering, but after 48 years, the loss is hard. My joy is knowing I will see her again because of what Jesus did for us on the Cross. I will pray for you and Todd as God lays it on my heart. Thankyou again! Mike
Debbie Zolnierowicz
Kristen, Thank you for sharing your experiences with us. I have sensed that the last few months have been hard on you. My journey is just beginning, and my husband's symptoms are very slow progressing. Some days I struggle to put into words "how I'm doing" - it seems absurd that I have to actually THINK about the answer. There are moments when my brain just cannot slow down enough to just "be" (or apparently to just sleep, as I've recently experienced bouts of insomnia where I'm just wide awake for hours at a time!)
My husband was diagnosed at the beginning of the pandemic, when most of the world was also facing a "new normal." Our new normal keeps changing though, and there is no sigh of relief that you made it to a specific milestone. Most of our friends and family have returned to their lives, or adapted without much sacrifice. But the isolation and constant adaptations needed with ALS don't end.
I tell people that loving and caring for someone with ALS is like death by a thousand cuts. There are days that I resent the drawn out torture, but mostly I am thankful that he is still working, still puttering in the garage (or trying to teach me how to fix something, which is often comical). He still feels a sense of worth and purpose, and that's meaningful and brings us both joy.
When I'm down, I force myself to remember the suffering of so many in the world...today and in the past. I think of the suffering of the pALS, knowing the burden carried by their loved ones and unable to lessen it. I find grace where I can, and move on. Most of the time, it works. Until it doesn't and I randomly start crying. It might be a morbid coping strategy, but thus far I have not stopped relying on it.
Since he started his trial 15 months ago, I've deluded myself into thinking he would just stay "as is" and stop declining. I even think of his minimal decline in ALSFRS-R score as some type of "victory" - a sign that the despair we felt at diagnosis was for naught, that our dreams of moving to the Northwoods of Wisconsin WILL actually come true. That he will live to see and play with "the grandchildren to be named later."
So thank you Kristen, for sharing your heart with us. And today in particular, when I now feel validated in my flights of fancy lol