Trying to see beauty after 13 years with a diagnosis of ALS

As I fed my husband, Todd, his morning breakfast, a charm of yellow finches caught our attention, flitting to and from a mountain ash outside our dining room window. That old tree has brought many moments of joy that are sweet reprieve from the daily challenges of life with ALS.

Mountain ash in three seasons. (Photos by Kristin Neva)

The tree is now deteriorating, with a rotted trunk and sparse leaves, but every spring it blossoms clusters of white flowers. It doesn’t turn yellow in autumn like a proper mountain ash, but after shedding its dried green leaves, its berries turn bright orange and hold tight for most of our snowy winters. We thrill at the sight in January, when within a few days grosbeaks descend en masse and eat the tree clean.

In the remaining winter months, we watch chickadees snatch sunflower seeds from a copper bird feeder that we hang from one of the branches. Squirrels scheme to get their share, and occasionally our dog, Comet, catches one in the act, sending it to the top of the tree until Comet gets bored or distracted.

On occasion rime covers the branches, and we marvel at the light caught by the ice.

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The mountain ash and barn in 1982, on the site where our house now stands. (Photo by Lani Siirtola)

The mountain ash tree has stood in that location for over 70 years now. It had already spent decades next to an old barn when my parents bought their farmhouse 47 years ago. My mom and I picnicked under that tree when I was a child.

The tree remained there for years after the barn blew down, and my dad kept it there when he cleared shrub and hauled away the barn’s wood to make way for our accessible house. We built our home 11 years ago in the spot of the old barn, keeping the tree even as we wondered how long it’d survive.

One side of the trunk was spongy and rotted then, and it’s only deteriorated in the decade that’s followed. In 2020, a large limb on the east side of the tree broke in a windstorm, and my son cut it off. Last year, another major branch on the south side died completely, and our neighbor cut off that section of the tree at the trunk.

Todd suggested once that we cut the tree down and replace it with a birch or maple, but I rejected that idea. The existing tree reminds me that life perseveres, and even in its broken state, the mountain ash radiates a weathered beauty and still produces fruit. That tree may have produced more fruit when it was healthy, but it’s more inspiring to see what it continues to give even in its decayed state.

Similarly, before ALS, my husband was patient, kind, and encouraging, but now in the midst of such a hellish disease, the fact that Todd still remains patient, kind, and encouraging is a marvel. And he’s remained my partner and co-parent of our daughter and son.

This Sunday, June 11, marks the 13-year anniversary of his ALS diagnosis. That’s a long time to live with a disease that keeps taking — from just having a weak arm, to needing a wheelchair, to being completely paralyzed, to needing breathing support nearly 24/7.

Grief accompanied each of those losses. I cry as I think about what we’ve been through — falling, choking, struggling to breathe — and as Todd’s health has deteriorated, we’ve become mostly homebound, making us feel isolated and bored. ALS is a brutal disease.

Thirteen years ago, we didn’t think Todd would survive to see our children into their teen years, because unfortunately most people with ALS only live for two to five years after diagnosis. But he beat the odds, and as hard as it is living with progressive disability, we still have moments of joy. And I’m glad our kids have grown up with an engaged father.

Our mountain ash will eventually die as it increasingly struggles to capture carbon dioxide from fewer and fewer leaves, but this summer we plan to transplant a sapling mountain ash to the foot of that old tree. And as our children continue to mature, I look forward to seeing that small tree grow in the shadow of our old mountain ash.

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