The satisfaction in having something besides ALS news to tell my friend

More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now live 10 hours apart, but we still chat on the phone every couple months, and we exchange text and email messages between those calls.

She reached out by email a few weeks ago to say she was thinking about me after reading one of my “Joyful Sorrow” columns. She shared a poem she’d written and asked how I was doing. She knows that our daily life is often difficult, and she’s listened to me process Todd’s ongoing decline over the years. I emailed her back and said we should chat soon, but I didn’t call her.

I thought about doing that on several occasions while I was doing housework. Even though I wanted to hear about her life, I just couldn’t bring myself to pick up the phone. My good friend is always an empathetic listener, but what is there to say about Todd’s ALS that hasn’t been said? And I didn’t have anything else going on in my life to talk about.

I just felt like I wouldn’t be good company.

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November 3, 2022 Columns by Kristin Neva

As an ALS Caregiver, Activities and Downtime Require a Mental Shift

Many conversations center around work, vacations, or future plans. And since I don’t have those things, conversations can lag. I can ask questions and listen, but sometimes I’m reminded of what we’ve lost and what we can’t do.

And then I got an email that the band was getting back together. Four years ago, I joined the Yooper-leles, more than a dozen people from ages 8 to 80 who met every week to play songs on their ukuleles. That’s where I came to love the Beatles song “Blackbird,” and we even performed once at a senior living facility.

The group disbanded when COVID-19 hit, but last week we restarted after a three-year hiatus. I pulled my ukulele out of its case and tuned it. I reviewed the chord chart, which is a challenge for me because my fingers have developed muscle memory for guitar chords.

After the first practice session, singing and making music with the group, I came home feeling upbeat.

The next day I called Jana, and we caught up. And then I made plans to get together with another friend to walk at the mall.

Because ALS could easily consume my entire life, I need to make an effort to find outside sources to renew my mind. It’s good for my mental health, it’s good for my friendships, and it makes me a better caregiver and spouse.

Taking time away from Todd, even if I’m just a phone call away and can be home within 15 minutes, gives us something to talk about. It rekindles a part of our relationship I miss so dearly, when we reconnected in the evening after spending our days apart.

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