Flying ‘Into the Light of a Dark Black Night’ With ALS

Kristin Neva avatar

by Kristin Neva |

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One evening, I took my daily walk in the Nara Nature Park in Houghton, Michigan. As I made my way around a network of wooden boardwalks, through a marsh, and alongside a riverbank and lakeshore, I listened to a symphony of birds.

I saw a few couples walking, and that stung a little because I can’t go on walks with my husband, Todd. He has ALS and is paralyzed, so he stays at home on his computer. Even though the park has a few barrier-free paths, Todd’s neck is almost too weak for him to leave home, much less drive his power wheelchair on bumpy surfaces. I can leave him for short periods of time, and I keep my phone with me so I can run home if he calls or sends a text message.

Aware of my aloneness, I saw another woman who was by herself; she sat on a bench looking out over Portage Lake. A bird fluttered about and perched on a dead tree near her. I stopped to snap a picture of the bird.

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“That was my husband’s favorite bird,” she commented.

“What kind of bird is it?” I asked.

“A red-winged blackbird. He has such a nice yellow stripe, too.” She studied the bird for a moment. “Well, enjoy,” she said and stood up to walk off.

I watched the blackbird for a few additional minutes, pleased to know what kind of bird it was. Everything becomes more poignant when it is named or explained.

“That was my husband’s favorite bird,” she had said. She used the past tense. Perhaps her husband died. I felt less alone. Grief is universal.

finding light in the darkness | ALS News Today | A blackbird perches on a tree branch next to a lake at Nara Nature Park in Houghton, Michigan.

A blackbird at Nara Nature Park in Houghton, Michigan. (Photo by Kristin Neva)

The bird flew off, and as I walked back to my car, an old Beatles song popped into my head. I hummed the song, thinking of the lyrics: “Blackbird singing in the dead of night/ Take these broken wings and learn to fly.”

Why would the bird sing in the dead of night? And how could it fly with broken wings?

I kept humming the song, unsure of the rest of the lyrics. I feel like we are in the dead night of ALS, a disease that has not only broken the man I love, but is also breaking me as his spouse caregiver.

“Take these broken wings and learn to fly,” Paul McCartney sings. He doesn’t say heal these broken wings and learn to fly.

There is no healing with ALS. No treatment available to get functionality back. If one is to fly, it will be with broken wings.

“Blackbird fly, blackbird fly/ Into the light of a dark black night.”

A time is coming that will be even harder. There is no morning light to fly into. Can we find light in the darkness of ALS?

I returned home and checked on Todd. He was fine, and I told him about the red-winged blackbird I saw.

“That’s one of my favorite birds,” he said.


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.

Comments

Denise avatar

Denise

What a beautifully crafted reflection, Kristin! Profound, personal, concrete. It is memorable. I always read your columns and I have appreciated their honesty, as well as the love that prompts you to care for Todd and also to offer insights to others dealing with ALS. That is a gift you give to the rest of us. I have never commented on this website, but this reflection deserves recognition. Before ALS I taught literature and writing in college. I know good writing when I see it. Thank you so much!

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Kristin Neva avatar

Kristin Neva

Thank you for your encouraging words!

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