I wrote this in 2011, but I guess I never posted it on this blog! I wanted to publish it now, so that you all could get a feel of what it’s like to live with ALS, as a patient, and as a loved one of a patient.
My mother Elaine was born on October 2, 1924 in Rockford, Illinois. She was a fabulous beauty with many suitors, and a few fiancés, but of course, life intervened and she made it through college to move to New York City, where she met my father, married, and had eleven children, one of whom died of SIDS at three months old. She was an actress, lecturer in her church, politically active, and a Children’s Librarian for many years at local library.
One day in 1980, she started feeling a sore throat. It bothered her, but she was not one to run to the doctor’s office. She kept saying that she would go if she didn’t start to feel better soon. She said that for a month. Finally, she realized the sore throat was not going away, and she went to the doctor, who sent her for tests, and she found out she had Amyotrophic Lateral Sclerosis or ALS for short, or as it is commonly known, Lou Gehrig’s disease:
“Henry Louis “Lou” Gehrig (June 19, 1903 – June 2, 1941). Gehrig is chiefly remembered for his prowess as a hitter, his consecutive games-played record and its subsequent longevity, and the pathos of his farewell from baseball at age 36, when he was stricken with a fatal neurological disease.”~Wikipedia
I must admit, when I found out, I moved within months to California. I was twenty-one years old and subconsciously but selfishly knew that I could not watch the events unfold. I could not lose my mother.
During the next year, Mommy struggled to live each day, but she continued to work in the South Orange Public Library as a Children’s Librarian. She lost her voice completely, lost use of her legs and had difficulty using her arms and hands. She was confined to a wheelchair, and had no real form of communication except her eyes and guttural sounds. This was causing intense depression for her, as she was a Communications Major, Actress, Writer, Librarian. Before she could no longer write, she was keeping a journal of her feelings about the onset of this disease. One day I read in her journal how hard it was to lose one’s voice, of all things, when your life is built around communicating. It was heartbreaking.
The children of the library to the rescue! They held a benefit to raise money to buy a newly designed computer for my mother to use at the library. She could type into the computer, and it would speak for her! This was quite a miracle in 1981, and it meant she could continue working with the kids, whom she loved so well, and who loved her as much or more.
I moved back to South Orange, as my big sister Tina had written me to advise that Karen could not bear the brunt of the caretaking alone. My father was eleven years older than my mother, and crippled by intense love and a pre-sense of loss. My brother Kevin helped of course, but Karen really was the primary caregiver for my mother. The other brothers and sisters were older, with young families of their own, and limited time to offer assistance. So, I returned.
The disease continued to take its toll rapidly, and my mother continued to fight back. She just would not give up on the quality of life. She wanted to wear what she thought were her finest dresses (she would be so mad if I tried to choose what she should wear, she was sick, not daft!), all the food she always ate such as steak and pizza, albeit pulverized, and of course, her Five-O’clock Cocktails. We would make blender drinks, and she would have her cocktails through a straw. She was happiest when her fragmenting world showed signs of normalcy.
She insisted on going places. The shopping outlets, plays, out to dinner. She didn’t want to be a shut-in. There were many people back then who had a problem with a dying woman in a wheelchair enjoying life. I don’t know how much that has changed, but I pray our world is wiser, and we realize that we may very well wheel that chair one day! Also, wheelchair accessibility in the early eighties was so limited. We would show up somewhere, and find we could not continue with our plans due to narrow aisles or no elevators. There were days we were so happy to have just a little more time together. There were days we ended up so disheartened by an unmoving world in our wildly changing lives.
A woman wrote to Mommy and said, “I don’t know how you do it. I saw you at church, and you are so brave. I have just found out I have ALS, and I am really scared.” This woman was embarrassed, as the world wanted the dying to be. She locked herself away and ate baby food, and was gone in six months. I have finally learned, from this experience and others like it, that no matter what the world throws at you, you have to fight. Even if you don’t win the war, the battles won make you a champion!
As the disease progressed, and the caretaking became more difficult, my mother’s and my depression worsened. I am highly ashamed to admit that I felt the need to confess all my life’s sins to my mother. Why? I cannot explain it. Somehow I felt she needed to know. I wished the moment after, and forever since that I did not do that. The hurt on her face was clearly readable. There was complete communication coming from her eyes. I had cut her deeply. I could not take it back, but I wish I could have said, “Only kidding.”
After that, I left for California again. I was selfishly immature for a twenty-three year old. I went back to Cambria, California, and worked as a prep-cook in a local restaurant, and cocktail-waitressed, and sometimes bartended in the big Saloon. I lived in an apartment above the saloon without a phone. On the morning of June 25, 1983, my boss from the restaurant came knocking on my apartment door, and calling my name, waking me up. Did I think, “What is she doing here? She never comes here.” No, I knew. I started crying immediately. I went outside and placed a collect call to my sister Karen, who confirmed it. Mommy was gone.
I tried to work and act like it was no big deal. I made it through the first night, but the next day I broke down on the restaurant’s kitchen floor. I had no money to return for the wake or funeral, and so I remained in my little apartment above the bar, getting drunk and crying over the pictures of and letters from my Mom. I stayed there for a week. Part of my heart stayed there forever. It was the first time I experienced such true life-altering loss, and I had removed myself from the epicenter of support. You would have thought that would have been a lesson learned. Of course, it wasn’t. The lessons I should have learned from this eluded me for many years.
I heard the Funeral was big. There were police escorts. Everyone loved my mother so. I still hear from so many people how much she meant to them, to their parents, to their children. I am so proud to say that Elaine Marie Kall Marlowe was my mother. I just wish she could see I am finally learning the lessons she tried to teach through her words, and when there were no words, through her actions.