In this piece, Diane shares two moments of truth about her life with ALS. I add a moment I remember in my response to her.
Reality check
Two experiences reside permanently in my mind, moments when the reality of what was happening to my body came crashing in and seemed suffocating. They were both points of dramatic transition in the disease process.
I remember literally walking away from the job I loved on a Friday afternoon. I was grateful all the men with whom I worked happened to be out of the office. I didn’t think they would know how to respond to the situation and I didn’t want to deal with awkwardness. It was difficult enough to walk away from the women in the office.
Clay was with me and my second son just happened to return with others from a church activity as we walked out the door. I wanted to hide, especially from my son. Instead he became a source of comfort as we walked silently to the car. He understood. He shared my loss.
Another moment of truth came three years later as I was wheeled toward the operating room for a tracheostomy. I’ve never felt anxiety over surgery, just a desire to get on with it. I felt the same about this procedure but my unexpected tears wouldn’t stop. I was grateful they hadn’t started until I was out of sight of my kids. They might have misunderstood. They had enough of their own emotions to process. I feared Clay would misunderstand as he walked with me through the endless corridors. I shouldn’t have worried.
When the medical personnel with me tried to calm my apparent fear, Clay became my voice explaining my tears. I wasn’t fearful or anxious. I had no second thoughts about my choice to extend my life with a ventilator. I was grieving yet another major transition, another loss. I was recognizing the cumulative enormity of our losses and wondering where it would all end. Somehow Clay understood. Perhaps he had the same thoughts.
June 2000
Dear Diane,
“The enormity of your losses,” yours and Clay’s together, hits me in the gut. It’s a place I know nothing about. There’s you. There’s Clay. And then there’s whatever that magic reality is that’s called Diane and Clay. Together. Husband and wife, parents of three beautiful children. All of you living with ALS.
I can’t forget the day they brought in your single hospital bed. The delivery and setup men were all business-like as they invaded your bedroom. You wept as you watched them dismantle the bed you and Clay had occupied for decades. You said it was like watching them take your marriage apart.
Nor have I forgotten what happened to your bed—yours and Clay’s. It got set up in the guest room. Now it was mine to sleep in. That first night it seemed I was betraying you by sleeping in it. Somehow I was desecrating it. Becoming one of ‘them.’ Those people and machines who were relentlessly invading your life and pushing you and Clay farther and farther apart in your bodies if not in your spirits.
There’s something about ALS that’s different from other diseases. It brings sudden death over and over and over again. Without warning. Here today, gone tomorrow. Little things. Big things. Including the death of hope that ALS will stop its relentless invasions.
I also witnessed moments when Clay and your children ‘got it.’ Each in his or her way. The ever-growing collection of Beanie Babies from one of your sons, the quiet coming-alongside of your other son, and the faithful sunny presence of your daughter as she became a young woman and mother.
And then there was Clay. Quietly attending to yard work, shrubs, flowers and bird feeders for your enjoyment. Working away on your computer or some other machine to make sure it did what it was supposed to do. Looking into your eyes, touching you.
If this seems a sad letter, it is. I loved accompanying you on your journey. I didn’t love what ALS meant for you and your family.
Love and hugs,
Elouise
Telling the Truth 