As I watch my father fighting for his life, I feel so clearly now, the roots of myself in the warmth of his skeletal hand. His hands have always been beautiful to me. As a child, I loved the way those hands expressed a sense of his anatomy in the way the tendons and the veins stood out beneath his olive skin. Now those hands have shrunk to half the size, his fingers swinging like branches of a graceful tree, from arms that are deflated and covered in scars and sores from being poked by needles. Tubes descend and rise with his movements, from his chest, from his index finger, from his nose.
I’ve written many times about our debates over his religion, and my lack thereof. I miss those debates very much. And I miss my father’s cooking. He loved to spend entire days cooking meals for our Sunday dinner. He now watches cooking shows from his hospital bed in the ICU as a sort of hope for the future. That one day, he’ll be able to eat again, rather than have nutrients pumped through a tube. He’s been suffering from Ulcerative Colitis for a little over a year. His care was not handled properly, and by last November, he was down to 105 pounds and spent Thanksgiving in the hospital. Then three weeks ago, his colon burst, and he had emergency surgery to remove it. Since then, he’s had E.Coli; fluid in his lungs; a lung perforation that leaks air around his heart; and now an abscess in his unused stomach, which can’t be operated on because his lungs are too weak.
This has been going on for so many months now, that I feel I’ve made peace with whichever way this goes. But when I heard the news yesterday about the air around his heart, I experienced an anxiety attack that kept my hands from working, made me dizzy, and sent weakness into my knees. My mom has been experiencing this continually, but it was the first time that I felt it too.
Growing up, my dad and I had a volatile relationship. I now see that this was because we are exactly alike. We are both stubborn, and equally tenacious. We struggled against the iron will of the other. At that time, he was also very distant, both physically and emotionally. He worked long hours, and came home exhausted. He traveled for business constantly. It wasn’t until he retired that we all got to experience what a wonderful person my father really is. My parents spent a year living in Italy just before that, and it changed him in many ways. He transferred all of his technical engineering skills into a passion for food and the process of creating beautiful culinary experiences for friends and family.
When my father is in the hospital, I pick up the reins, and I do my best to fill his role. I cook the meals that make my family smile, I do my best to keep my mother calm, I instruct her on all the things my father always did—like the banking, and the computer issues, and the organizing of their lives. I feel all of the pressure that he carried for us for so many years. A lot. It is heavy. And when I am alone, I realize how hard I’ve worked to be strong for everyone, and I see that I am depleted and weak.
Thankfully, my sister just flew in recently, and she is staying with my mother so that I no longer have to fill that role. I don’t have a great deal in common with my mother and sister, but we are all getting to know each other in new ways. It’s my father who is so much of what I am. In the same way that he always has, I spend my days analyzing information and solving problems. I am very much in my head. I have to remind myself to be social. I’m not the warmest person in the world. It takes some effort. All of my pleasure comes from art and expression. Without that, I lose my sense of self. So I guard it carefully, and I fight in order to do it everyday. My father is not an intellectual, but he understands art and design. He has the same appreciation for film and music. There is an affinity there that I am lucky to have.
However, there are also the parts of me that my father will probably never understand. He will most likely never comprehend why I am an Atheist, and because of this, our worldviews are quite different. He does not understand the sort of wife that I am to my husband, in a relationship of equals, with different opinions and views than my spouse. My work ethic is not fully perceived by him, as it is not for most people who don’t understand the amount of effort it takes to write books and make art on a daily basis. Yet, he has a great appreciation for my talent, especially in regards to visual art.
I’ve seen my father go through many changes in the past four months. As his body became more toxic before surgery, I saw the negative side of my dad that I hadn’t seen in years. He was angry constantly, and prone to panicky moments. Almost every topic of conversation stressed him out. Yet, the day after his colon was removed, along with all of the toxins it had released; the dad that I know and love was back again. A few days later he told me that I’m his baby, and such a sweetheart. Words so uncharacteristic for him.
In the midst of my panic attack, I considered what my life would be without my father. If he doesn’t make it, I will no longer have that complicated person who I most relate to. And yet, he would still live on through my family. All I have to do is look down at my hands to see his hands. My sister, and my nieces—we all have traits of his.
Yet, he says he’s going to get better. He submits to every treatment in order to do so. He tells us not to worry. But of course, we do. We wake up on the hour, and check our phones for missed calls from the hospital.
In this place that lies on the balance of life and death, it is hard to be fully invested in life. But life goes on. He’s been in the ICU for exactly a month now. I have an art show coming up, and a book to finish, and piles of research to get through in the process. And without all of this, my mind would never have a break from the processing of what we are all going through.
Life is at once a rhythm, and also a series of unexpected things. Roles reverse, or change completely. The lessons we need to learn are not by our choosing, yet they are necessary in order to find our sense of empathy. Struggles have their importance. They refine us and bring us closer together. They show us what we most value, and the takeaway is to spend our lives learning to be fully embodied within that and aware of the brevity of life.
Lauren J. Barnhart 