“Are you sure that’s what you want to do,” he continued to question.
A flash went through me. Not normally an outspoken or presumptuous man, I said something quite out of character.
“Before I got sick, I taught about living.” I said to him. “Now, I will teach about how to die.”
He looked at me shaking his head in agreement. Gary knew me well. He understood my point.
“There are no lesson plans written for this unit, so don’t be looking for one during my yearly observation and evaluation,” I said with a sardonic smile. “I’ll have to improvise and figure it out as I go.”
With Gary’s help, I taught through my growing disabilities. He facilitated every modification I required to enable me to continue teaching. He was an ardent supporter of my first Ride to Washington in ’98. I could not ask for anything more from a boss.
Tragically, Gary developed cancer over that summer. Gary did not return in the fall; he was too sick. He did not respond to treatment. The disease traveled at warp speed. In a cruel turn of events, we both became Dead Men Walking.
His disease progressed fast. I now became his encourager. I visited him in the hospital hours before he died. I think of him often and with grateful fondness.
The lesson I learned from this was life must not be viewed in isolation or in a narrow slice. By doing so a distorted image is created. If a circle were examined closely, it appears to be a series of random straight lines. To get the true image, one must step back and view it in its entirety. Only then does the true design reveal itself. The same is true with life.
How Soon Is Soon?
In my eyes, teaching was not something I did to earn a living. It was more an extension of who I was and how I lived. My mind thirsted to know and understand the marvels of our glorious world. Learning was living. Living was learning. What better endeavor than to co-discover and share the mysteries of the universe? I was a student of life. Teaching these marvels came second nature to me.
By age forty-four, my educational career was in high gear, honed by years of experience. I ran an award-winning science center filled with all sorts of incredible things including numerous scaled, finned, feathered and furred creatures. I created an intellectual version of Toys R Us, a room to captivate young minds. By all external measures, I was a successful and esteemed elementary teacher. I loved my job and it loved me.
Reverberation rumbled through the school and beyond into the community after the news leaked out about my diagnosis. When I returned responses were hushed because I did not go public with my devastating news. It is understandable, I was unapproachable for a while searching for my way to cope with my fatal future. Showing me respect, everyone waited for a signal before broaching the subject with me.
As I grew in understanding and acceptance, I returned to the joys of life. I eased back into myself. I returned to living. I smiled and sang once more as I walked on campus. My classroom breathed again. I remained silent in public.
Seven months later, during ALS Awareness Month in May, I found enough strength to write an opinion piece for a major suburban newspaper, Newsday. For the first time, I revealed my fatal disease, ALS. I described the deplorable state of research and called for more attention to the illness. Coming out was cathartic as I told the readers I will die. I breathed easier without the weight of secrecy on my shoulders. The article demonstrated my refusal to ‘go quietly into the night and chose instead to rage against the light’. To use a baseball metaphor, I intended to go down swinging. The piece appeared on a Friday afternoon. I held my breath and braced for the unknown reactions.
The trepidation after writing the piece did not last long. On the Monday following the article’s publication, I stood in front of my school awaiting the bus as normal. The youngsters filed off and looked everywhere but at me. There was no joy in Mudville.
My position was teaching the gifted program for elementary students from a large district in Northport, Long Island. My oversized classroom at Dickinson Ave. School served as a magnet school. Busses brought children from their home schools to work with me in the Habitat Science Center. Since the children were young, I met and escorted them across campus to the room. The five-minute walk was a relaxed and spontaneous time for chatter, news and extemporaneous lessons suiting the moment. As we walked to the classroom that day the line began to stretch out and I found myself straggling near the end.
One of my third graders walking with me, Jimmy DeVerna called “Mr. P!” I turned and bent towards him to give him my full attention as we walked. My posture invited him to continue. “My mother told me you are sick,” he declared.
“I am, Jimmy.” To reassure him, and perhaps myself, I quickly added, “but I am doing well.”
“She said you’re gonna die.” It was clear the family discussed my illness. Jimmy heard his mother talking about my prognosis and the fact that survival time is short. “Will it be soon?” he inquired in a rising voice.
This crucial question spoke to me as a patient and not a teacher. I did not want to lie nor could I tell him the brutal adult truth that I would be dead in a couple of years because ALS is untreatable and unstoppable. I didn’t want to evade him but I didn’t want to overwhelm him either. With steps left before the two of us entered the classroom, I slowed our pace to a crawl, buying time to come up with an answer.
As an undergraduate, I studied the foundations of education. Socrates, one of the greatest of all teachers, perfected the art of teaching through questioning. I learned if you ask the right question, you will find the right answer. The teacher inside me finally spoke, framing my answer for him as a question. “Well, Jimmy, what do you mean by soon?” I gave him time and waited for him to think.
With innocence and honesty, he raised his eyebrows, widened his eyes, hunched his shoulders and spoke. “I donno, maybe a couple of weeks?” he replied. I laughed to myself, half with surprise and half with relief. He provided me with the answer.
His reply helped me compose an answer dictated to him and his point of reference. I rested my hand on his shoulder, smiled and looked straight at his face. “Oh Jimmy, you don’t have to worry about me dying soon. I promise you, I am going to be here a long, long time!” I declared with a teacher’s authority. He accepted my answer. His angst eliminated, he stepped into the classroom, back into the innocent world of eight year olds. I followed him into the room, a teacher once more. The patient remained at the door.
Over the next two years, I looked at Jimmy and relived that moment many times. He graduated elementary school and we said our goodbyes. Six years later, Jimmy graduated high school. The following year, I retired, closing a three-decade career. I lost contact with him but know he graduated college. Over the ensuing years, I have used Jimmy’s story quite often to convey my wonder about the vaporous essence of time. Time is an enigma.
My diagnosis forced me to consider the grim reality. I did not want to die “soon” and I didn’t mean a couple of weeks. I imploringly prayed to escape the statistics. I hoped to live beyond ALS’s cruel expectations: death within thirty-six months.
This past Columbus Day weekend brought an extraordinary anniversary. With it, I began my twenty-seventh year of learning, marveling and teaching about the mysteries of the universe. I kept my promise to Jimmy. A mystery to me is how I have kept it for so long.
I continue to pray. I still hope for tomorrows. I look forward to many more awe generating explorations. There are more mysteries still to ponder. Who knows, perhaps I may even still teach.
The lesson I learned from this was how time is, indeed relative. ALS, like any terminal illness alters how time is measured. A lifetime becomes compressed into the course of the disease. You are not guaranteed anything, even the prognosis. Life each day to the fullest and hope for tomorrows.
Deadly Déjà vu
The pain was significant and seemed so innocent at first.
I reassured myself, “Who doesn’t get an occasional cramp?”