Host Dick Gordon has checked in with Ben Harris and Scott Haren, who suffer from ALS and have tried to make their own medicine to stop the progress of their disease. Harris wrote the following story for his son.
By Ben Harris
It was the winter of 1984 and I was a junior at the Northfield Mt. Hermon boarding school in Northfield, MA. I had pitched the idea of attending boarding school to my parents about a year before and here I was. I was a good student and was becoming more and more eager to excel academically when I proposed the idea to my parents. They were so touched by my eagerness that they never once brought up the point that it would be unlikely that they would be able to afford it. To their great relief I was given a generous grant and the rest of the tuition was taken as a loan which I would pay upon my graduation from college.
So here I was in boarding school. I had worked hard in my public school but was still unprepared for the rigor of a private boarding school. I was determined to succeed and applied myself to my studies with dedication. My classmates were all intelligent, hard working and had already had superb educations. I would often study until 3 am just to keep up, even though I had to wake at 6 am to have time for breakfast and catch the bus to the other campus for my first class. I was keeping my head above water academically, but I was enjoying the challenge.
One morning I was in my room feverishly trying to complete my reading assignment for religion class. I had a break in the day before religion and usually did my reading assignment then, but as I looked again at the assignment, and then at the clock, I knew I would have to skip lunch and stay in my room reading until just before class. The problem was I was starving.
My desk was arranged such that I sat next to my roommate's dresser. My stomach growled and my eyes fixated on the lower three of the six drawers. I was staring at them because they were filled with some of the finest Swiss, German and Belgium chocolate imaginable. Stefan's mother sent a care package full of chocolate almost every week. I was so close to the dresser I needed only to reach over and pull them open.
My roommate, Stefan, was from Germany. When I filled out the registration forms for NMH I specifically requested a foreign exchange student. I wanted my time at NMH to be as intellectually stimulating as possible and what could be better that to have a roommate from another country.
Stefan was probably not the best German representative because he was a living stereotype. At first I thought he was performing for me and I waited for him to break character, but he never did. Stefan always held himself as if trying to levitate just slightly off the ground. He walked with his chin pointing upward and his eyes gazing down over the dashboard of his plump cheeks. He would cheerfully arch his back, raise his elbows and lift his heels as if each step would be the last needed to touch the ground. Even as he sat at his desk his back was arched as if he was posing for an advertisement for a chiropractor's journal where an artist would neatly draw a perfect S shaped spine to overlay on the illustration. He was prim, proper, neat, and always punctual. He was too German.
This was not the first time I had taken chocolate from Stefan's supply. I began sneaking little bits of these confections but only from open packages with items too numerous to count. Stefan had introduced me to a world of flavor that was completely unknown to me until then. I had been living in a black and white world when it came to food. My mother's parents were of Irish descent, and while the Irish accent had long since faded through the generations, their apparent disdain for flavor was dutifully passed down. I grew up on very small variations of meat and potatoes and my mother stood guard against any sweets entering our house. Our desserts were simple variations of flour and sugar. I had grown up to be so indifferent to food that I would have eaten brick dust if it was put on a plate in front of me.
Almost every night around 10 o'clock, Stefan and I would take a study break. I would make some coffee for myself as Stefan carefully selected an item from his drawers. I could tell that he very much looked forward to the expression on my face as I tasted my evening ration. As I bit into the little cakes or pieces of chocolate that he would give me, my eyes would close involuntarily, my chest would cave in and my shoulders would hunch over as my brain frantically tried to categorize this wholly new experience. And when I opened my eyes, Stefan was always there looking at me with a big grin on his face.
My favorites soon became the Lindt chocolate bars that are similar to Kit Kat bars, but in shape only. To me they were like piano keys because each time I had one it reminded me of the first time I heard a perfectly tuned piano. I had stumbled upon the music room on campus one day and I sat at the piano for what seemed like hours playing one note at a time. We had a piano in our house but I had never heard such pure and wonderful sounds from it. Each note all by itself was music; I pressed each key and listened to each note as it filled the room and then fell to the floor, like a snowflake, into beautiful silence. Likewise, as I placed these pieces of chocolate on my tongue I would not swallow them, but rather I would let them melt slowly in my mouth so I could savor the chocolate purity for as long as possible. Then I would take a sip of coffee and do it again.
I tried to focus on my homework but it was pointless. The hunger began to hurt, and so I opened one of those drawers and began to look for something to eat. Today was a little different however. I was both hungry and tired. I had been up until 3 am doing my physics homework as usual but it was the end of the week and I was running out of steam. My eyes were only half open when I pulled the drawer open.
I reached into the drawer and my fingers crawled around like a crab and then clutched what appeared to be a candy bar about the size and length of a flattened Snickers bar. I then unwrapped one end and held the chocolate bar in front of my mouth and bit into it as if it was a Snickers bar. I was moving like a marionette with strings of fatigue and hunger moving my limbs. As my jaw opened and shut, chewing away, my blank marionette stare slowly became human again, the fog lifted and I realized what I had done. I had taken a bite out of something big from Stefan's treasure chest. I had not just taken some tiny indiscernible item from a row or bag of identical items! Stefan would notice this at once I realized with sudden cogency. "You idiot!" I screamed at myself silently, inhaled and uttered "Shit" out loud with a mouth full of sugary paste.
I didn't even know what I was eating but I knew right away that there was nothing else to do but to eat the whole damn thing. And I did just that. It was a strange grainy substance that became smooth at it settled in my mouth and it was covered in a thin layer of soft milk chocolate. It was an experience no more disappointing than anything else from Stefan's pot of gold. As I chewed the last of the bar I straightened out the gold foil wrapper and read the word "Marzipan.” I crumpled the foil up into the smallest ball I could, pressing hard with my thumbs as if trying to make it disappear. I then buried it at the bottom of the trash can in the hallway and took a very long drink of water from the fountain. I finished my religion assignment and sat through the rest of my classes that day feeling thirsty, guilty and sick.
That evening as I sat at my desk I found it surprisingly easy to put the crime out of my head. It was only the latest in a series. This caper was quite audacious but during the day I had reminded myself that Stefan had three drawers full of all kinds of chocolates, candies, cookies, and things I didn't have names for, like half-cookie half-cupcake chocolate-covered fluffy nuggets that contained sugar crystals that would snap as you chewed them. It was a sea of fulfillment and whenever Stefan rifled through the drawers of plastic wrappers it would sound like he was splashing about in a bucket of water. There was so much, surely the missing bar of Marzipan would go unnoticed.
I jumped a bit when Stefan announced break time. He always dropped his pen onto his neatly aligned stack of papers and asked "Ben, would you like a treat?" Every night it was the same question, with each word individually wrapped tightly in his German accent, his back erect, shoulders straight and only his head turned toward me. I could never understand how he could pronounce those words so perfectly and yet deliver them with a deep baritone voice like the baa of a two thousand pound sheep. "Of course," I said with the same –very sincere-- smile I had on my face every night when I answered that question. I pulled out my jar of instant coffee, filled my coffee cup with water and clipped inside it a small heating element I was not supposed to be using because it was deemed a fire hazard by the school.
Stefan opened the drawer and looked pensively at the mosaic that lay under his face, occasionally making those familiar splashing noises with the plastic wrappers as his dug around. The heating element in my cup began to growl as the water heated in a rehearsed way like a mating call rising slowly in pitch. "Ben…" Stefan said as he stood upright returning to his perfect posture "have you ever had marzipan?"
We live our quiet lives unaware of the violent chemical storms trapped inside each and every one of our cells. Molecules of a million variations fly about and crash into each other at unimaginable speeds but yet all seems quiet to us. If we could shrink down to the size of our cells, the silence around us would grow to a chatter and then to a violent thunder. Stepping inside a cell would be like walking into a chaotic thunderstorm with clapping thunderbolts. When needed, however, the torment trapped in each of our cells can be unleashed one upon another like exploding dominoes.
As Stefan began to hum the letter M deep in his chest, these dominos began clicking away, sprouting paths throughout my brain in every direction. By the time he brought his voice up out of his chest and into his mouth pronouncing "ar," my brain was on fire and the neurons sent pulses to those little water balloons called glands tucked away between my organs, muscles and bones, forcing them to pop and spew chemicals into my blood to further incite the rest of my cells to unleash their inner fury on each other. By the time Stefan's tongue rested on the roof of his mouth to finish with the letter "n" in "marzipan" I could feel my blood vessels pounding against the insides of my toenails as beads of sweat began forming on my arms and forehead.
The word rang in my ears like a tuning fork and my eyes stared straight ahead at the wall as if I expected a poltergeist to emerge from a very specific point. The blood in my brain swirled and focused on that part responsible for presenting to my consciousness all the possible worlds that lay in my future given the choices I would make. It was being called upon now to predict what life I would live from this instant in time forward based on how I would answer the question "Have you ever had marzipan?" This small fold in the fatty tissue of my brain which had mostly been used to decide how to spend lottery winnings was now summoned upon to avert an international incident--a task for which it was wholly unprepared.
My eyes were frozen in their sockets as I turned just fast enough to avoid suspicion, but slowly enough to have a few more milliseconds to imagine the consequences of my answer. I tilted my jaw upward to point my frozen eyes toward his and utter an answer not based on any endgame calculation of how to gracefully exit my hopeless situation, but rather from a deeply primal fear of telling the truth. There was only one future I could seem to imagine. The future in which I told him the truth. I could see it clearly. Stefan would recoil in disgust and horror and suddenly see me not as a friendly American roommate, but as a sniveling thief. The four walls around him would close in upon him as he realized he was trapped in a cage with a scorpion.
I was so horrified by this image I did not have the strength to imagine the alternative. I felt as though I had expended more energy in the last two seconds than I had all evening. My now-limp brain could only see this future as a doorway, and though I could see nothing but darkness beyond it, I stepped into forward into it. Time was up. One more second of hesitation and the moment would strike us both as awkward.
"No," I uttered.
Stefan had hardly waited for my reply, when a giant smile burst onto his face. Tonight he was going to outdo himself with a very special surprise for me. He bounced up onto his toes like a diver on a diving board and came down quick into the drawer with a mighty splash of plastic wrappers.
"You are going to love it!" he said with his eyes looking down into the drawer with that gaze we use when we look through water, squinting and moving his head side to side. He swished the contents of the drawer around and then paused, saying “not here,” and then swished and paused again, again repeating “not here.”,My heart began to beat hard in synchrony with the motions of his hands. Swish, pause, thump. Swish, pause, thump.
"Where is it?" he uttered softly to himself. My heart gave a final hesitant thump squeezing hard to deliver blood to the oxygen- starved skin on my pale face and the lifeless canopy of brain cells in my skull.
What the hell was I thinking? "No"?. How could I say "No"? Was I hoping he might decide to be mistaken about having giant bar of marzipan in his chest of drawers? One doesn't just think they had a giant bar of marzipan in their drawer anymore that one might just think they had a pet fish.
Then, as if a trap door had opened beneath me, I dropped into a state of resignation. I was released from the burden of making a choice; I simply had to admit to Stefan that I ate his marzipan. My stomach became heavy and I felt very sick. I could taste the marzipan now again as guilt and nausea swirled together in a bowl of hopelessness. The embarrassment I was about to suffer was going to be colossal. I took a deep breath; my diaphragm was shaking as I inhaled, making my breath flutter.
I listened to the silence of that last pause for ages and waited for the courage to come to me as if standing on a cliff preparing to jump into water far, far below.
"Stefan…" I said.
"Ah, here it is!" Stefan shouted, oblivious that I had begun to speak. And I saw the marzipan in his hand and stared at it as if it were a bar of pure gold emanating bright happy beams of light. The fear and humiliation rushed from my body and in less than a second I went from being filled with dense adrenaline to being filled with helium. I took in a long deep breath expanding my chest as far as it would go. He had another bar of marzipan!
Stefan turned and looked at my eyes which were so wide they might fall out of their sockets and obviously mistook my relief for anticipation and giggled out loud. His delight was amplified by mine and mine again by his.
"Oh, you are going to really like this!" he said proudly and strolled over to my desk. Carefully he unwrapped the bar to expose about one inch, grabbed a tissue and placed the marzipan on my desk on top of the tissue. He was uncharacteristically silent as he then raced back to his desk, opened the middle drawer and pulled out his authentic Swiss army knife. He opened the knife as he walked back to my desk smiling but still silent. He leaned over the marzipan bringing his head close to mine and suddenly the scene looked like an operating room. Our heads hunched over the patient illuminated by my small desk lamp throwing just enough light onto the subject and bouncing it back into our faces while our bodies remained in the shadow.
Stefan made a small incision a mere two millimeters from the end of the marzipan and moved this piece to the tissue I had laid out for myself and then another incision another two millimeters from that. The slice he was cutting was so thin I could see the outline of the knife through the semitranslucent marzipan paste as it fell over softly like a feather. The image of me wiping his brow during this operation jumped into my head and I fought hard to keep myself from laughing. I had a strong need to laugh from the trauma of the last few moments as if I had been punched hard in the arm.
"Try it!" he commanded, and we both ate our wafer-thin pieces of marzipan simultaneously. "Mmmm," he hummed as he stood up straight. "Oh, isn't this good?" he asked, peering down at me waiting for my usual expression of delight. I don't remember ever having to fake liking food. My parents were never proud of what they cooked and never asked "isn't that good?" so I had no practice. I was, however, good at telling my sister that her outfit did not make her look fat.
I muttered "Oh, this is so good. What is it called again?" I asked, trying desperately to shift the onus of the conversation back to Stefan. The sugar receptors on my tongue were so fatigued that I wouldn't have been able to taste the difference between the piece of marzipan and the tissue paper it had been sitting on. As I swallowed it, the flavor brought on another wave of nausea as I was reminded again of swallowing a whole bar that morning. I held myself upright with all my strength to feign satisfaction when all I wanted to do was to lean my head over the wastebasket and vomit.
"Marzipan!" Stefan said proudly.
"Ok, back to work," he said. He swiveled on his heels and marched back to his desk.
"Thank you Stefan" I said as I turned slowly back and stared again at the wall. With my back turned to Stefan I allowed myself to smile and thought to myself "What a funny story this is going to be." I never stole from Stefan's stash of chocolates again.