This is a love story that spanned decades.
I wrote this column 26 years ago: I first heard it in Bobbi’s voice when I called to talk with her husband, my lifelong friend, Chet.
“Now don’t think I’m drunk here, Doug. I’m on a medication my doctor gave me for an infection.”
She did sound drunk, but I knew Bobbi and I knew she wouldn’t be.
I pushed the incident into a memory recess and forgot about it.
A few weeks later, I visited Chet and Bobbi. When she left for work, he told me. Bobbi had been diagnosed with Amyotrophic Lateral Sclerosis, ALS – Lou Gehrig’s disease. The “infection” she had been suffering from didn’t abate. She had tests – more tests – then tests at the Mayo Clinic. Confirmed – ALS.
Bobbi’s ability to speak decayed steadily. Now, nearly five years after we learned she had the disease, she can still be understood by family and friends, but only because she labors so to enunciate. Because she struggles to speak, people speak loudly to her although she hears well. She’s in a wheelchair mostly – she walks some with a walker. Stairs are unmanageable. She falls sometimes and it hurts because although the nerves controlling her motor skills are failing, her pain receptors are not.
How has Bobbi responded to this ultimate life challenge? For the past four years she has participated actively and energetically in ALS support and awareness projects. The March of Faces is a pictorial display which celebrates the courageous men and women who have been stricken with ALS. Bobbi’s there. Each spring she volunteers for Strike Out for ALS, a Partnership between the Minnesota ALS Association and the Minnesota Twins. She joined others in a 350 mile, 15 day ride – Ride for Life – from New York to Washington, DC – a caravan of wheelchairs, scooters, bicycles. Bobbi and her courageous associates raised funds for a cure to this enervating disease.
In April 2000, Bobbi was presented the Norton-Sing Sharing-the-Journey Award by the ALS Association. In remarks made at the presentation, she was called “someone who, when faced with the adversity of an ALS diagnosis, channeled her energy into doing positive things for the benefit of all persons with ALS” and as “someone who exemplifies the true meaning of the word ‘hero’.”
This year, Bobbi is active in Pals Across America, a road trip for ALS. Yesterday she was in Washington, DC for the fourth time for National ALS Advocacy Day. She met with congressmen to lobby (as lobbying ought to be done -- by private, caring, unselfish citizens) for funding for the National Institute of Health.
I don’t know what makes ALS sufferers so unimaginably brave and giving. What makes Lou Gehrig call himself the luckiest man on the face of the earth? I know that none of the scores of friends who attended Bobbi’s 50th birthday party knew either. They just knew as I did, that we were all privileged to know someone like Bobbi.
When you call their house now, you often get a recorded message – you know the kind – “This is Bobbi. Chet and I are not at home now, but leave a message and we’ll call you back.” The message was recorded in her clear and warm voice before this indifferent disease chose her to infect. While her voice is now nearly gone, her message is still there. Fight this disease. Fight it for those you love and those you admire. For all the Bobbis.
That was 27 years ago. It’s now September of 2026.
A few weeks ago I visited Bobbi and Chester in their home in Richfield. Her voice was weak but with Chet’s help and context we three had a lovely conversation. Bobbi asked about others. I hugged her shoulders. This was now three decades after that phone call. Twenty-seven years after her 50th birthday party in her wheelchair. Over thirty years that she, with uninterrupted help and love from Chet, fought, contributed, and remained inspirational and unfailingly kind.
On Sunday, September 20, nine days after her 77th birthday, Bobbi died. She will be remembered for fighting for what she believed in. Chester will be known for believing in her.
Doug Luthanen grew up in Ely and graduated from Memorial High School in 1967. He is an occasional contributor to The Ely Echo.
