Walk for Valerie

May is ALS awareness month

Valerie Louise McGuine Atkinson is my mom. She was diagnosed last October with ALS. This is a progressive neurodegenerative disease, and sadly there is no known cure. I’ve been really hesitant to dip my toe in the ALS community because I’m mostly depressed, angry and resentful about this diagnosis. I am on the mailing list for the ALS Association and have only felt edgy and honestly, offended at times when I read the emails from them. There’s a perkiness, hopeful language, and pictures of people smiling widely next to a loved one who has the disease. Usually a little story about the person with ALS and why we should donate to make ALS “liveable” until it’s “curable”.

On my recent visit to Wisconsin to spend time with my mom, I asked what she wanted to talk about during this time (this quick and painfully slow ending of her life). Truthfully I have felt very lost. I have not known what she wants to hear or what she wants to focus on. We’ve mostly been managing our sadness as we realize this news is true and certain. In a matter of just a few weeks, her speech has gotten harder to understand. She sounds garbled and deeply slurred.

I want so badly to do the right things, say the right things. I want to know, from my mom, what she wants right now. Her answer was that she wanted to focus on enjoying her days. She wanted me to stay positive around her and give her light. She wants to take in simple joys, like getting to be on her deck in the summer feeling her skin warming in the sun. She wants to look out at the lake. She wants to watch funny movies, ones she’s already seen that she loved. She wants her family close, just being with her. She wants to be in her home now, while she still can, as those days as numbered.

A couple weeks ago I noticed an email from the ALS Association, sharing information on a “Walk to Defeat ALS”. I had my familiar initial response, I felt angry and sad. I got a follow up email. This one landed a little softer this time. Something in me was saying, maybe you should do this. I opened the email and decided to see if there was a walk near me in Massachusetts. There is. It’s close and it’s at park I really like. I wondered how my mom would feel about it. In the past, she was like me, against getting involved in the community. She said it was too upsetting. I decided to casually bring it up in a text, telling her about the walk and that there was one near me….and I could participate…if..should I??? She responded by calling me immediately. She was overcome with emotion. My mom said she was humbled and touched that I would consider doing that for her. And for others with ALS. And for the families and friends of folks with the disease. I was so relieved.

I’ve never done anything like this before. I even made myself team captain. I will walk for my mom, Valerie. I will try to raise money for this terrible disease. I will donate to the ALS Association. I will find an online support group thru the organization. My sadness, anger and resentment, that’s all still there. But there’s also an assignment for me. A mission. I have to hold all those hard feelings with my deep profound gratitude and awe I have for this life. This flawed life. This flawed world. Where good people die in ways you can never understand. But they do. I have to remember to stop and notice the moments of joy and beauty that take my breath away. Every day there is a moment like this. I don’t seek “a happy life”. I look for moments of happy. That makes more sense to me. I know that when I do the Walk to Defeat ALS there will be moments of intense pain and sadness mixed with laughter, birds chirping, the earth under my feet, my able body moving, my heart pumping, friends and family moving near me, with me. I want to take a group picture after the walk, and I will smile, so big.

For my mom, because that’s her wish.

If you’d like to walk with me in person you can join my team. You can also join my team virtually. Here is the link. I hope this link works.

Here is the info as well. That’s my team, Valerie’s Visionaries.

Team:Valerie's Visionaries

Event:Western Massachusetts Walk

Date:Saturday, September 6, 2025

Location:Frank Newhall Look Memorial Park

My mom and Dad, three years ago, on their 50th wedding anniversary. My Mom’s wedding dress behind them. The sweater she’s wearing I knitted as her gift, inspired by the dress.

with love,

Adelle