In the summer of 2002 Ernie was invited to give an address at a meeting of ALS supporters and researchers. His voice was weakening and this was the last time he spoke in public. Here is what he said:
Every day I remember. I remember games of pickup basketball. I remember playing the piano. I remember walks with my wife through the neighborhood and games of hide and seek with my kids. I remember taking stairs two at a time. I remember coaching high school basketball and being able to outrun and outlift most of the kids in the program.
I enjoy those memories, and revel in them, even though they are tinged with sadness at abilities lost.
I have other memories too – a year ago being able to walk, haltingly, with a cane. Six months ago, being able to lift a forkful of food to my mouth; three months ago, being able to speak clearly and precisely.
It was about the time that I got this wheelchair that I learned to appreciate the present, because if ALS does nothing else it teaches you to live in the moment. I began to savor the things that I could still do, and worried less about the things that I couldn’t. Today I can still draw a breath on my own, and enjoy a dish of ice cream, and I rejoice in that.
I remember the last time I walked the two flights of stairs up to my office. I stood at the railing, looking out at the schoolyard next door, so full of life and laughter, soaking it all in – and also wondering how the heck I was going to get back down to my car.
I made a conscious decision that I wasn’t going to let this disease, which has such a tenacious grip on my body, destroy my spirit as well. That’s not always an easy resolution to keep, and it’s not something I can do by myself.
Let me paint a picture in contrasts for you. I know of a PALS – person with ALS – not as advanced as I am, who has taken to his bed. He will not leave his bedroom, he will not accept visitors. His wife brings him his meals and, when he allows her to, she cleans him up. He has many friends who want to call on him, but he is ashamed to let them see him in his weakened state. His despair owns him. Barring a miraculous transformation, he will die broken and empty, and those around him will talk of the indignity of the disease.
Let me tell you also about my friend Kathy, part of a PALS internet chat room where we have all become fast friends. She lives in Florida, the mother of four young children, and was diagnosed with ALS at a relatively young age. She progressed rapidly and elected to go on a ventilator. For well over a decade her devoted husband took care of her every need. She was unable to hug her children, but loved it when they came home from school and threw their arms around her. She even held down a part time job, working for Disney Cruise Lines.
Eventually her two oldest children started college, leaving the two younger ones at home. I will never forget the day I received the horrifying news that Kathy’s husband had died suddenly, leaving her without a caregiver. The state wanted to put her in a nursing home and place her younger children in the foster care system, but Kathy would have none of that. She rallied friends and relatives to her side who pitched in with her care. Through their efforts and hers she was able to retain custody of her children. She continues to work to this day.
All of us, whether afflicted with a terminal illness or not, are free to choose how we will live out our days. Will we be like the shut-in who imprisons both himself and his wife and simply waits to die or will we, like Kathy, view life as an adventure, no matter what challenges and obstacles are thrown our way?
Let me tell you what my answer is. I am going to cherish every day that is given to me. I am going to immerse myself in life. I am going to treasure my wife and my children. I do not fear the end because with their help I will make every breath precious and every remaining second a miracle.
Ernie died nine months later.