The tough veteran reporter encouraged Morrie to be honest, “Go ahead, say it on TV because in many respects it brings it home (the devastation of the disease) much better than anything else.” My heart froze.
“Well,” Morrie chose his words carefully, “I will know I’ve had enough when I can no longer wipe my own ass.” That is when Morrie would end his life. He then waxed philosophical, lamenting about growing dependence and declining quality of life.
As a patient facing the loss of walking, eating, talking and breathing, his reference to a trite subject like toileting surprised me. God, what a relatively insignificant thing to hang a decision to live or die on. Out of all one can lose, how could he include that to signal the end of the line?
When most people awake in the morning they ask ordinary questions such as, “What is the weather? What should I wear?” I was not ordinary. I was an ALS patient struggling to continue to work.
I had to ask, “Will I need to go to the bathroom in the next 8 hours?”
Because of my paralysis, I no longer was able to independently toilet. Female colleagues surround me in an elementary school. There were few options available if I had to use the bathroom at work. This reality framed my workday.
The morning of the ceremony, my son arose excited for the day to begin. It was hard for him to wait for the event. Affirming the specialness of the occasion, I said, “Buddy, I am really proud of you and I am looking forward to watching you get your award.”
“I’m leaving,” Christine shouted as she grabbed her lunch.
“Bye mom!” Christopher yelled back before running out the door himself.
“See you guys. Love you.” I added. My ride was running late. It was 7:00 a.m.
Around nine o’clock, in the middle of a lesson at school, I felt an uneasy rumbling in my belly. This was not a good sign. By lunchtime, the sensations were steady along with an occasional cramp. I studied the clock calculating the remaining time and strategizing how to make it through until I got home. At the end of the day, I zipped on my scooter toward the parking lot where I would rendezvous with a volunteer driver for the one-hour trip home.
I short-changed my car pool driver on conversation during the ride as I concentrated on holding on and holding it in a little longer. My pride shouted to maintain pleasantries but my insides screamed otherwise.
Summoning up the courage and the words, I delicately explained, “I’m sorry but I gotta get home as soon as possible. I need to have a bowel movement. Please step on it!”
“Sure! I will get you there, don’t worry,” as they sped towards my house.
I promised, “Otherwise it would not be pretty if I didn’t.”
The car did not even come to a stop in the driveway and I moved to exit. My driving companion raced around to help raise me up from the low car seat. Although my arms no longer functioned, I had enough strength in my legs to walk short distances (my friends and family referred to it as stagger). Like a miracle out of Lourdes, I found the power to dash to the door. My driver threw it open for me and I headed for the bathroom upstairs in my room. On good days, the thirteen stairs were a marathon climb for me. That day they loomed before me as an Ironman Triathlon course. I gave it my best attempt.
Several steps up, my luck ran out. So did my bowels. Anger filled me as I failed so close to success. Even though I lost control, I had no choice but to go on. I continued to go up as well as out. Each remaining step was a torturous, slow journey. By the time I reached the toilet, I was soiled and there was a total mess behind me. I was disgusted...
I collapsed down on the seat. My paralysis made removing my fouled clothes impossible. Unable to clean myself either, upset and dejected, I sat resigned to staying there until my wife came home. Sitting on the toilet for a couple of hours was not the worst fate in the world. I could have fallen, lying on the floor, in pain. I totally forgot about the award assembly until I heard the door close downstairs.
“Dad, are you ready?” my son’s voice lofted up from the foyer.
“Holy crap, now what am I gonna do?”
Throughout my disease, I attempted to keep my life as normal and routine as possible. I refused to have my children’s memories of our life etched by illness. I did whatever I could to be ordinary. I did not hide my disease nor its outcome, but neither did I let it define us. I strived to avoid making my problems my children’s problems.
When my son ran up the stairs to check on me, he found my trail. His voice sounded edgy as he called “Oh man! What happened? Dad, are you alright?”
I managed to slam the bathroom door with my foot before calling out.
“Buddy, I had an accident. I am a mess in here. Stay out,” I commanded. “I went all over myself. My clothes are disgusting. I don’t want you to come in,” I shouted from behind the door.
He protested, “But Dad, I have my assembly today!”
“I know Bud,” my voice thick, “but, there’s nothing I can do. I’m sorry.”
“I’ll help you. Let me come in,” he implored.
My mind swirled with conflicting feelings. My dignity, my pride, my fatherhood, they all told me to tough it out and wait for my wife.
“No, Bud, I am gonna wait for Mom,” I did not realize how he was feeling.
“Please, I want to help you!” he insistently continued. “Please, Daddy.”
My heart broke as I stood my ground.
“Buddy, I am OK. I just have to wait for Mom.”
I wanted to spare him the unpleasantness. I wanted to avoid creating a memory of this distasteful task he was so ardently requesting to perform. It was my job to be stoic and deal with this alone, I told myself. Somehow, I thought by taking this stance, I regained some control over my illness. My decision to keep him out allowed me to retain a remnant of my former self. I was not letting ALS rule my life.
Pride distorted my thinking.
“But, I want you to come to the assembly,” he emphatically proclaimed.
“Buddy, you’ll have to go by yourself. What can I do?” my voice rose an octave as I shouted back through the door.
“I will clean you. It’s okay. I want to help you. Please, Daddy.”
His voice had a tone that sliced right through the wooden divider. I did not want him to have to see me like this. No young boy should need to wipe fecal-filled folds on his father’s body. It just wasn’t right.
It is also not right that a father doesn’t accompany his son to an award ceremony.
I was living the moment Morrie Schwarz spoke about to Ted Koppel. This was the great chasm he chose to separate life and death. Morrie wanted to die before he had to endure the indignity of someone wiping his ass.
The tiny bathroom shrunk as I sat there thinking. His pleadings became background noise as I wrestled with myself. Was I really protecting him? Or, was it my hidden pride? Did my decision benefit him or was I punishing him?
He pulled me back to the present with his crackling.
“Daddy?”
I made a pivotal decision, one, which helped me understand more about the essence of fatherhood. It’s about what he needs and wants, not my wishes. I should be at his ceremony, not wallowing in my own inabilities, stubbornly refusing his offer of help.
“Ok, Buddy. Come on in.”
With grace and maturity far beyond his age, he got me ready. We spent the next forty-five minutes cleaning the room and me. Tension yielded to comedy as we exchanged various bathroom humors over the situation. Rather than being horrible and embarrassing, it resulted in a spiritually growing and bonding experience.
With