How Wonderful Life Is While Youre In The World: A Tribute to my Father on the Third Anniversary of his Death

This is the fifth in a series of articles Ive published after losing my beloved father Bruce and, two months later, my only brother Zachary. I write about my life after the dust settled, trying to make the most of each day with the help of my mother, husband, and three children.

My father was diagnosed with a glioblastoma multiforme in October of 2013. I remember hearing the word for the first time and saying it aloud, enunciating each syllable slowly: glee-oh-blast-oh-ma, then typing it into my phone, my eyes frantically scanning the screen.

Brain tumor. Rare. Malignant. Fast-growing. Aggressive. I came across an article titled The Terminator. At first I didn't understand. My husband explained: it terminates everyone who has it. The reference turned my stomach. It would stay with me, an image I could never shake.

Glioblastoma- the word would become synonymous with everything evil in the world.

I read more. You were more likely to get this type of tumor if you were male, over the age of fifty, and of Caucasian heritage. The median survival is twelve to fifteen months after diagnosis.

My father was male, sixty-four years old, and of Caucasian descent. He survived fifteen months after he was diagnosed. He was the standard patient, perfectly typical in every way. It was the ultimate irony: he was the most atypical, complicated, unconventional person Id ever known.

For most of my life, a lucky star shone brightly over my family: my mother, father, brother Zach and I. I was born in Berlin, Vermont. My father used to sing the line to the tune of Bruce Springsteens Born in the USA. The city of South Burlington, where we lived, was situated on the beautiful Lake Champlains eastern shore, and we had a near-perfect view of it as we entered our neighborhood. Sightings of Champ, the sea monster that inhabited the lake, were common occurrences. My father always swore he could see him, off somewhere in the distance, so we thought we could see him too. When he told Zach and I he'd be able to tell us the exact moment the traffic light would change from red to green, we waited expectantly, staring at the light with baited breath. He'd count down- ten, nine, eight- and look back at us, both incredulous. How could he possibly know such a thing? But somehow, he always did.

I was always more than willing to believe my father- about anything really- as in my mind he was the greatest, smartest, most special person in the world. He was all-knowing, of that I was certain. When my mother gave me my first Cabbage Patch Kid, I named her Rachel. It was my fathers favorite name, and the one hed chosen for my middle name. When it was time to replace my bedroom carpet, my father suggested yellow. My mother thought it was a terrible choice- it would get filthy- but I agreed right away.

I always intrinsically understood, even as a young child, that there was something magical about my father. My brother always said he had a romantic view of life. He believed people were generally good, if you gave them a chance. Ordinary things were full of excitement; he derived joy from simple pleasures and relished in the little routines of ordinary life, which took on a greater meaning. For him, there existed a sort of holiness in the mundane. He was nostalgic to a fault and was always taking my brother and I to see the hallowed places of his childhood. The past was something that deserved to be honored; any painful shortcomings or disappointments could be glossed over in favor of a sweeter, shinier picture. There was never a need to see the glass as anything other than half-full.

I stood slightly in awe of him, and always felt a sense of obligation toward him: to protect him, to safeguard his happiness, and certainly never to disappoint him. From the moment he was diagnosed, I felt I possessed a certain power to fix things for him. Clearly, the belief that I had any control at all was an illusion. It was the only way, though, I knew to keep my stifling fear at bay. I pored over the research on glioblastoma, all of which was disheartening. It seemed to be a box you couldn't escape from. The desire to insulate my father was something my mother and brother shared. Thus began a delicate dance between us. We formed a little cocoon around him, carefully filtering the information he received. We knew what he was capable of handling. We never spoke outright about his tumor. We never used the word cancer. We talked about treatment options and the logistics surrounding them. He was minimally involved in these discussions, for the most part remaining quiet and entrusting us to make his medical decisions.

The only thing my father was vocal about once he got sick were the specifics of the various procedures he needed. His whole life he'd suffered from severe claustrophobia, which made everything a bit more complicated. He was hyperfocused on the details of every test: because of his anxiety, he couldn't have a normal MRI. Though he would have agreed to an open MRI, which had open sides and didn't push down on his arms or shoulders, the hospital didn't have one. Special arrangements had to be made. He would be completely sedated for the procedure, which would delay the results a bit, but there was no question that wed accommodate him as much as possible. We never tried to convince him otherwise; we all instinctively understood that there were certain things he wouldn't be willing to do.

It was an exhausting balancing act- trying to remain calm and focused for my fathers sake, all the while knowing I was fighting a losing battle. Although I knew where the train was headed, a part of me still believed I could stop it somehow. The thought of any other outcome put me into a panic. And though I was terrified of having a frank conversation with my father, I also felt we were being duplicitous by hiding certain information from him. My whole life Id believed I knew my father almost as well as I knew myself- mostly because I was just like him. His reaction didn't seem to be consistent with the father I knew. Sometimes Id catch him staring off into the distance during meetings with his doctors, somewhere else entirely. My mother and I were firing off questions; he was daydreaming. Was he even listening? I found myself getting angry, wanting to shake him. Did he understand the enormity of his situation? Was he pretending not to, to protect us? I wasn't sure. On the other hand, I knew with certainty that if he broke down or showed fear, I couldn't face him. I couldn't bear it.

I know now that my father's focus on the details of the MRIs, and the multiple procedures that would follow, was his way of coping. It gave him something concrete to fixate on. The results of the tests would be what they would be, and he accepted, implicitly, that he had no control over them. But making it through a procedure, or surgery, or treatment- that he could will himself to do. It would be the way he would proceed over the course of his illness: staying in the moment, never getting ahead of himself or looking too far into the future. In my heart, I believe his way of navigating his disease wasn't contrived, wasn't a strategy he determined after thought and contemplation. Rather, it was instinctive, a combined product of his faith and general philosophy on life. It was an acceptance of his inability to control most of the outcomes of his world. To be sure, it was far more graceful than my own approach of raging back at the unfairness of it all any chance I got. In the short term, its what allowed him to keep his sanity during those terrifying days. Ultimately, it was the most valuable lesson my father ever taught me. Although I couldn't save him- something I always knew- in the most important way, he saved me. He showed me how to let go. Only when you let go can you see the beauty thats right in front of you.

For a long time it scared me to think Id never have a frank conversation with my father about his brain cancer, the affliction that would eventually kill him. I couldn't understand his unwillingness to acknowledge it. In the end though, it was simple. His reaction was the answer of a man without regrets, whod lived a good life and was content. I slept next to him on his last night, but we never said goodbye. We didn't have to. He loved me and I loved him- there was nothing else that needed to be said. Three years have passed since my father died on January 11. I long for life when he was here. I remember how wonderful and magical it was. Luckily, he left behind a bit of his magic. It still remains, within me.