Every time I saw an ALS Ice Bucket Challenge video on Facebook, I thought of my mom, smiling, on Thanksgiving Day 2006.
Maria Segura Hoopes would have loved seeing the misery of ALS wedded with the goofiness of all those videos—because she filled the misery of her ALS with a constant, courageous smile.
Thanksgiving was the second time that year we flew ourselves and all our children—six at the time—across the country to spend time with my mom. Each time we wondered if it would be the last time we saw her. ALS families know what that’s like.
But we never expected what actually happened.
We gathered at the house in Sonoita, Arizona, a sleepy little cowboy town my father had fallen in love with as a child. My mom fell in love with it when she discovered how much cooler it was than Tucson—and when she found a house with a big tree out front whose branches reached the ground. She pictured grandchildren climbing it and playing house under its branches.
Her vision came true. The kids visited the tree first that Thanksgiving and then filled the house, orbiting around the island of peace that was my mother, smiling in her chair.
ALS—Lou Gehrig’s Disease—shuts down your muscle groups one by one, and by then Mom couldn’t speak and could barely walk. You had to sit close to her to hear her words, which emerged from a little machine that she held in her lap.
She thought the machine’s chirpy monotone voice sounded like one of her granddaughter’s friends, so she named it “Bridget.” I loved how Mom never conceded any of her grammatical principles. Bridget always spoke in complete sentences, and her words were always spelled correctly, even when the correct spelling produced strange pronunciations.
But the most typical thing about my mom was that, even when it became very difficult to type, she typed all the extra letters it took to include a “please” and “thank you.” She was grateful when gratitude cost.
She also always kept her sense of humor. We once asked her why she smiled so much in the midst of her disease. She painstakingly typed and pressed the machine’s button.
“Whining is a bad exit strategy,” said Bridget.
The human Google
Maria Segura was born in Mexico, but moved to Bisbee, Arizona with her family as a girl. Her dad, Juan Segura, knew several languages and read voraciously, a habit he passed on to her. Her mother, Elvira Garcia Segura, had been an orphan raised by nuns and gave us holy cards every time we visited (St. Dymphna was her favorite).
My mom was an elegant, intelligent, witty woman. She sat for years at the central reference desk of the University of Arizona Library where she assisted students and answered the helpline. These were the days before the Internet. You actually had to find information yourself. If you couldn’t, you called my mom. She was a human Google, unstoppable at Trivial Pursuit.
She was also full of joy. She never just came home from work. She always made her entrance count. She would open the door and call out in a long noise that began as an owlish “whooo…” and ended as an Arthur Fonzorelli-style “aaaay.”
Mom also had Victorian standards of cleanliness that were very hard for those in her family to live up to.
It must have been a tortuous experience for her, sitting in that chair on Thanksgiving as we cooked, then cleaned up, and did it all wrong. She smiled anyway.
That smile was a far cry from Thanksgiving 2004.
We had our turkey at my sister’s house in Connecticut that year. My mother had been slurring her words for months, and my father had fielded concerned calls from his three children asking if mom had suddenly developed a drinking problem. No, he said. Something was wrong, and the doctors couldn’t figure out what.
That Thanksgiving we sensed that, whatever it was, it was something huge. My mother wasn’t just slurring her words. She could barely speak, and she couldn’t eat well anymore either. I offered a toast to her, trying to be cheery, but in retrospect it was a bad idea. It sounded like a eulogy. Mom cried. My sister fled the table.
It was February 9—Ash Wednesday—before the results came back from the complicated procedures used to diagnose ALS. To be told you have ALS is to be told that you have started the process of dying. The doctors, using medical language, repeated that day what the priests told us: You are dust, and to dust you shall return.
If there had been an Ice Bucket Challenge in in 2005, I think I know where Mom would have wanted her donated money to go.
Though she was a die-hard Democrat, Mom was also a passionate pro-lifer. As a kid, when abortion advocates would send direct mail pieces to her, she would have me put heavy material into the business reply envelope so the group would owe money when returned. She taught me that taking a life was never a solution to any given human problem.
I recognize her logic in the words of St. John Paul about research on human embryos: “Any treatment which claims to save human lives yet is based upon the destruction of human life in its embryonic state is logically and morally contradictory.”
Most Ice Bucket Challenges sent money to the ALS Association, an organization that, alongside its truly wonderful work, also funds research on embryonic stem cells—sacrificing one set of lives for another. But many sent their money to Team Gleason—the organization former New Orleans Saint Steve Gleason started when he got ALS. The organization provides speaking devices to families.
Just such a group sent Bridget. They allowed us to talk to my mom the day she died.
Mom’s last day
My dad thinks my mom stayed alive longer than she would have otherwise because she wanted to be a part of that Thanksgiving. But Mom was as caustic on the subject of her impending demise as ever. She typed, and Bridget said, “I guess it would be tacky to die with all these little kids around.”
But it wasn’t tacky. It was beautiful.
To afford all those flights, we stayed the weekend after Thanksgiving and planned to leave on Tuesday. On Sunday, the priest at Mass embarrassed Mom by praising how she suffered “with dignity, and even joy.” Then he gave her the sacrament of the anointing of the sick, because he wouldn’t be able to get to the house the next day. Good thing he did.
On Monday, we took her six grandchildren to Bisbee to give her a rest. When we got home, Mom was praying her Rosary. After dinner, we showed her pictures of her grandchildren clowning around her childhood home and climbing the rocks and walls she climbed as a child.
Since we were leaving the next day, she had my dad write little love notes on her behalf to each grandchild. Then, at 8:15, she was tired and needed rest. We all said good night as Dad wheeled her away.
She died in her bedroom as the older kids and I said the Glorious Mysteries of the Rosary for her across the hall.
That night the whole desert got bitterly cold. I looked up the records. The temperature literally dropped 26 degrees that night. It was God’s Ice Bucket Challenge.
This November, I am thankful that my children got to see how their grandmother smiled when it was an act of heroism to smile. I am thankful that they have seen the example of my father, showing what a husband’s unconditional, unselfish love looks like.
And I pray that I learn to smile like my mom did, no matter what it takes.
Written by Olivia Hoopes, age 10, on November 27, 2006, the day her grandmother died of ALS.
Nana would smile and shake her head at us. When she smiled at us, it was like getting to the top of a high mountain and feeling proud that you did it.
When we went to the fire station church and she was in her wheelchair, I was proud that I had a relative in a wheelchair! Not once did I see her sad or angry or irritated with us or anything else. She just smiled, happy that we were with her.
If she got a cold, it would be bad, so we tried to be careful. She said, “Heaven would sure beat this.”
Sometimes I wondered what it would feel like, knowing you were going to die. But she was sure right. Heaven’s got to beat this.