MARILYN HAGERTY: Battle lost for her 'Christmas Carol,' but war with ALS goes on

• Marilyn Hagerty

Marilyn Hagerty

Talk about it

Dear Shirley,

Carol was ready — as she put it — to be free of her broken body and embrace eternal life. She died at home Friday near Merino, Colo. The little Methodist Church in Merino was full to overflowing for her services Tuesday.

We stood in the cold of December at the country cemetery near the cattle farm that was home since she married Curt Werner 17 years ago.

When she was diagnosed with ALS (amyotrophic lateral sclerosis) a year ago in March, we thought she would live from 3 to 5 years and maybe more. But the cruel disease moved relentlessly. It has been described as being like a candle that melts your nerves and leaves your body like a pile of wax.

On the day before she died, Carol wrote some notes and letters for her family. She said when she got her tracheotomy she expected a few years more. She thought she would be able to get around in a wheelchair and go outside.

That was not to be. The disease progressed relentlessly. Since April, she depended on a ventilator to breath and a feeding tube for nutrition.

She had reached the point where she could barely communicate. She could no longer move. She wrote a farewell letter to her family with a device called DynaVox. By blinking, she could get letters up on a screen to form words.

It was slow. It was frustrating.

She wrote that she had come to the conclusion God blessed her with time to prepare her family and herself for death. The vent she said bought her valuable time to interact with her growing children. “But now it’s time for me to set them free to explore their futures. And time to allow Curt to finish raising our family without the constant need to care for me.”

Your niece showed strength and courage. She always thought about what she could do, not what she had lost. When she found out her brother Bob dreamed she could walk again, she said she had that dream many times. There’s no getting around it, Shirley, ALS sucks. Maybe someday they will find a cure as they did for polio.

Meanwhile, our hearts are aching. It is only with the help of family and friends that I can bear this grief. We need people to lean on. And the people were there for the family in the little town on the high plains of eastern Colorado.

During the past year and a half, there have been random acts of kindness that we never will forget. Friends here in Grand Forks have supported the ALS walks. When the road was most rocky, there were friends like Geri Solberg to tend the dog, Jan Kurtyka to check the house and Donna Gillig to take me to the airport.

Now I am home thinking of how I used to call her my Christmas Carol. We brought her home from Northwestern Hospital on Dec. 24 when we were living in Minneapolis 57 years ago.

For 18 months, I have thought of her when I wake up in the morning and when I go to sleep at night. And there are words that linger with me. Such as the day last summer when she said, “I will never pick apples again.”

She loved you, Shirley, because you and Frank were so good to all your nieces and nephews.

Life will go on. ALS will strike more people. We will try to help others in the same generous ways people have helped our family.

Your sister, Marilyn.

P.S.: I heard on the news that it has been painfully cold in Tucson. I don’t suppose you people are equipped for readings of 20 or below. I trust the sun will warm you up before long.

Reach Hagerty at mhagerty@gra.midco.net or (701) 772-1055.

Tags: marilyn hagerty, lifecolumns, deaths, als, health, family, life