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Robin Brumett of Seattle placed an ad on Craigslist. She asked people to come to her home and speak to her husband who has amyotrophic lateral sclerosis, or ALS. ALS is commonly known as Lou Gehrig’s Disease. Robin’s husband, Bert, is conscious He sees, hears and understands everything that is going on around him, but is trapped inside his body, unable to speak or move. He blinks to communicate, and uses a ventilator to breathe. Many people have come in response to Robin’s Craiglist appeal. They come to have Bert see and listen to them as they bring their lives and stories to his bedside. Bert can no longer interact with the universe "out there", so Robin is now bringing the world he loves to him. It is a tribute to the profound love between these people.
One friend called it “The Church of Bert”.
Lou Gehrig’s disease was named after the famed ballplayer who had it. Other victims of this devastating and heartbreaking disease include Woody Guthrie, the legendary folk singer, and Steven Hawking, the genius scientist.
But back to Bert, and his story.
One of his last communications with his wife, Robin, was a love letter.
"I was putting on his socks and shoes for him and it said, 'Babe,' — we call each other 'Babe' — 'Babe, if this was reversed, I'd be doing this for you. I love you forever.' It makes me feel bad when I think about it. But I know that he would," Robin said, in tears.
One man came to read Bert sections of a book he is writing about the civil war. A father came with his little girl and read children’s stories to her during their visit. One man wants to bring his three boa constrictors, but the caregivers are a bit uneasy about that on their shifts. A scientist came to discuss volcanoes and earthquakes. A Peace Corps worker brought her pictures from all over the world.
One visitor described the experience as “raw and beautiful”. People arrive as strangers, and leave as friends.
ABC called it “a vast cathedral of the human heart”.
If you have a story that you would like to share with Bert, or want to just send him and Robin a quick email, please do! If you are in Seattle and wish to visit Bert, just email them at the below address.
Email him at BertUni@hotmail.com
I think it would also be wonderful to have folks get the news out about this opportunity to care.
I am going to send him an email. Surely you will join me, won't you?
Too often we think that we must do something large, something grand to change the world, or to live generously in it. Sometimes it also helps to do something small, something intimate, something for folks like Bert and Robin in Seattle, as yet unmet members of our very own human family.
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Related blogs – more stories of hope, courage and love in the face of ALS
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In her blog, ALS Never Give Up Leanne talks about coming to terms with her father’s ALS.
Though I myself find it harder some days than others to deal with my new reality, it helps me deal by trying to bring more awareness to this disease, especially to a younger audience. I've found that the support groups that are offered really only cater to the patience and caregivers and tend to forget about the childern.
I personally have found fundraising a great outlet and have contributed to a few already, including hosting my first annual event supporting Columbia University ALS Gift Fund this past February at Corio in NYC, which raised 15K.I'm hoping this page will reach others dealing with similar situations from ALS, MS, Parkinsons and let them share their stories.
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CBS news tells the story of how Bob Marshall jogged through his Salt Lake City neighborhood getting ready for the Boston Marathon — which would be the last marathon of his life. CBS says
At age 54, Marshall has been diagnosed with Lou Gehrig's disease. His muscles are being destroyed, and eventually his lungs will shut down…His fingers already have started to fail him and Debi, his wife, helps him dress, CBS News correspondent Jerry Bowen reports…
"Everything was always going to be OK as long as he was around," Tiffany says. "He took care of pretty much everything."
Bob Marshall did run his last marathon. He cannot tie his shoes. Running the marathon left him exhausted
