What I Mean When I Say I'm OK

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.