I’m terrified of death. I don’t really know how anyone could not be or how we could rightfully be expected to stare into the wet eyes of someone who owns a piece of our heart and know it may be for the last time. My brain doesn’t feel big enough to process the impossible thought of seeping back into nothingness. Of saying goodbye to the morning. Of permanently being out of reach. I want and I try to believe in something bigger than us and in the promise of eternity but it is easier to conceptualize in the theoretical than in the actual. As my dad is fast asleep for the seventh day, breathing heavily and hugging death, it is harder to trust in infinity because it feels entirely the opposite. It feels he is disappearing against his will when he so badly doesn’t want to go. He doesn’t want to have already ridden his last wave or caught his last leaf. He wants to meet my babies and to hear the chickadees this spring. He doesn’t want to let go of my mom’s hand. He doesn’t want the end because he is accustomed to living his life at the starting line. He is accustomed to waking up and saying what a beautiful day, let’s not miss a minute. He is not ready. But maybe all we can hope for is to not be ready for death. To hunger for life so voraciously that leaving it feels like starvation. To inhale so much from each day that to not have another feels like you are suffocating. To love so god damn hard that to lose someone feels like losing yourself. Maybe that’s it. And that is what my dad has done. He has proven to us that there is no such thing as a bad day and that love is visible in actions and in always being there and that the sun is a gift to be opened and how to work really, really hard to get what we want and to never say never and how to infuse laughter in every situation and to use the cashiers’ names and that it never hurts to ask and to always pack sneakers in case there is a race, and how to make a parade out of dead sunflowers and how to see a single patch of snow and deem it sufficient to ski and how to never pass a farm without mooing at the cows, and how to bring light into every room and leave people feeling happier than they did when you entered, and how to wake up every single morning and be grateful that we were given another day and to take that day and pack 5 normal human days into it. This is how my dad has lived. And when he was diagnosed with terminal brain cancer, he didn’t change a thing about his life. He didn’t start living like he was dying. He kept living the exact same way he had been living before. I think that is the ultimate. To be at a place in life where when death calls, you don’t change how you are living and you just wish you could have more time to keep doing it. Maybe that is how we conquer our fear of death. To see life as the opponent of death and to play hard. If those are the rules, then it was a shutout. My dad beat death by never ceasing to live. He isn’t ready to die but he never would be. And maybe that’s the most beautiful thing.
I’m ok. I keep saying I’m doing okay when people ask how things are at home because I don’t have the energy to say the other answer. I can’t say that one year ago, my dad whooped my ass in a 60-mile bike ride and today I slowly pulled him out of bed while he grabbed his neck and wailed. I don’t text you that my dad has run 7 marathons and exercised every day for 30 years and that today it took 10 minutes to carry his half limp body from a wheelchair to the couch. It is easier for me to let you know that I will be okay than to let you know that I’ve slept an average of 4 hours a night for the past three months because my brother, my mom and I wake up a few times a night to take my dad to the bathroom. It takes three of us to get him to the bathroom. And last August my dad and I were going to the bathroom in the woods as we hiked across the entire state of Rhode Island. Glioblastoma is an ugly word. When I heard my dad had stage IV glioblastoma, also known as brain cancer, I thought I would go on marches. I thought I would tell my dad to fight and that we would shave our heads together as we walked on a long path to recovery. We haven’t walked, we haven’t had the chance to fight, we haven’t had the excitement of clear scans, we have lived in fear of a rapidly growing monster inside my dad’s brain. His brain, where he keeps us. Where he keeps his quirks and his education and his sense of humor and his strength for talking to me and his ability to control his body. We’ve slowly and rapidly watched my dad be invaded. He had a headache. And three days later, he had a scar spanning the entire right side of his head and a daunting prognosis. They initially told us 3-4 years which turned to 1-2 years to we don’t have hope because of the position in which his tumor re-grew. Since that initial day we have watched my dad go through surgery, radiation, chemotherapy, try an experimental drug, a new diet and every type of homeopathic supplement. We have watched him lose the ability to use the entire left side of his body, we have listened to his voice weaken to a whisper and we have answered his questions about the weather that we have answered hundreds of times. Glioblastoma has robbed my dad. It has ripped away everything he has spent his life building. It has left us naked and vulnerable and terrified and crying in each other’s weak arms. It has kept us on edge about what new loss every day will bring. It has left us lost at the thought of a future that doesn’t include all four of our physical bodies together on this earth. It has brutally broken our hearts. But it would have had to try harder if it wanted to tear us apart. What it has done is brought us together for an entire year, to Florida for two months, to New Hampshire to run a race on the fourth of July, to Bretton Woods to ski, to Caratunk Wildlife Refuge to hike, to our basement to watch home videos, to our backyard to swim, to the dinner table every night to eat and pray for another beautiful tomorrow together. We have not lost my dad and this year has made it obvious that it would be impossible to ever lose him. His playful spirit and boundless energy breathe inside of us and in the bellies of everyone he has touched. Yesterday, our doctor told us that we only had a few weeks left. Today, we woke up to a 67-degree day and my dad deemed it pool weather. We all dunked our exhausted bodies into the near frozen water while singing and shrieking and smiling. That’s my dad. He is looking death in its face and saying hey why don’t you come in the pool with us, the sun is shining and for early October, that is a real gift. He is inviting us to seek out the yellow in a sea of black. His eyes are assuring us that life is beautiful, that we are always together and that it will all be ok. So I am ok. It’s bad and horrible and heartbreaking and isolating and sickening and devastating and totally unfair. But life is beautiful, we are always together and I will be ok.