Pins and Needles

October 20, 2008

I sometimes wonder what an alien would think if they studied human life from our movies. Their idea of human emotion would be warped by countless runaway fathers, dying mothers, and desperate kisses in hospital rooms.
Us humans, we love our tragedies. The drama! The passion! Sometimes I wish my life were a movie because then the emotions would be so straightforward. I would always know how to feel.
At first I was reluctant to write this essay for a couple reasons. First off, I felt ashamed sharing my story when it is my dad who has leukemia; he is the one who’s been through so much, not me. Second, I have never really talked in length about how my dad’s cancer has affected me. I’ve told the (deep breath) two-bone-marrow-transpalnts-three-relapses-interferon-prednisonecyclosporin-gleevec story countless times and heard it so many more that my medical vocabulary could shame a few doctors. But about me- my experience with cancer- I have remained unintentionally silent.
I have become rather numb to the pain and/or fear and/or bitterness that I may or may not have experienced over the years. The problem is that I have seen so many movies about how I should feel that I can hardly recognize my own feelings on this subject. This is a strange realization because my eyes are usually quick to fill with tears, my heart to fill with anger. I have realized that I have experienced emotion a lot less than I have studied it. And I’m not even from another planet.
What really compelled me to write this essay is that its readers will mostly be people who I do not know and therefore will not have the opportunity to compare what I write- sincerely here to what I have observably expressed throughout my life.
I do not remember exactly when my parents told me that my dad was sick, only that it must have occurred sometime between the “the tooth fairy is not real” talk and the sex talk. The first five years of my life were ones of moderate interest in my dad’s life. I was particularly drawn to the picture in my dad’s office of him holding me right after I was born. He was about to have his second bone marrow transplant (BMT) and had a weak immune system. He was in a laminar air flow (LAF) room and held me with plastic gloves from the other side of a transparent plastic wall. The picture was also on display at the Hutch and I was so proud of my dad for being so “famous”.
When I was in kindergarten my dad relapsed. One evening I came downstairs and watched from around the corner as my dad injected himself in the thigh. A little bit of bright red blood seeped up around the injection site. For the next few months and then once in a while since then, this film-clip like memory has consumed my dreams. I watch over and over again the needle puncturing his skin and the blood ooze. Sometimes I see myself watching him and sometimes it is a close up of his leg as if I was leaning over him. His pant leg is rolled up, his skinny thigh exposed, the odd tint of his skin is disguised by the dim light, and somewhere between dark hair follicles a little red dot appears and it covers my vision. Everyday for a year my dad injected himself with interferon to enhance his immune system. What I thought of then was how these daily shots turned jovial santa-clause daddy into irritable depressed. My parents think that my severe fear of needles today is fear of pain. They think I don’t remember the interferon days.
A year or two later, when my dad was finally off the interferon and put on an experimental drug, he had an allergic reaction. He was rushed to the hospital in the middle of the night and I was driven to my best friend’s house. I was not worried because my parents told me not to be, but I was terribly confused as to why I was allowed to sleep at Hannah’s house on a school night. I have two vivid memories of that night. The first is being terrified that someone was going to jump in through the window next to the bed I was sleeping in. The second is being at the hospital peeking through curtains at my dad. There were yellow-tinted tubes shrouding his face and that’s all I could see of him. Apparently I was never at the hospital that night and wasn’t told until later what was going on. But that image was as really terrifying to me as lying in bed looking out into the dark.
Mostly leukemia has been a constant weight on our backs; we always have to carry it, but sometimes forget that it is there. When I was younger I saw my dad’s perseverance as nothing but strength and endurance. But as I grew older, entered middle school and got ideas of how things should be I considered that perhaps my dad was really just being pulled along. I saw a weakness in him that before I hadn’t perceived. And I was disturbed by this new realization. In 7th grade my family went through a rough patch as my dad was put on a new medicine. I continued to mistake his humanness for weakness. Not only was I embarrassed and a little bit disgusted with his… failure, so contrasting to what I had perceived before, but I was even more disgusted with myself for feeling that way and acting upon it. In order to show my dad that he was wrong (about what I don’t know), I acted like a complete and obnoxious brat to my parents. They didn’t understand it and I didn’t either. To everyone else I was sweet, self-motivated, and conscientious. I’ve always thought that the impossible side of myself I showed in middle school was my real and true self. I have reasoned that I simply wasn’t afraid to show my genuine personality to my parents because I knew they would always love me. This is my deepest secret, my deepest shame, something I try not to think about, knowing I will cringe inside and out when I do. But writing about this, being forced to think about it, I must come to the conclusion that that better side of me I yearned for was not fake at all. I see now that my dad’s cancer had permeated me as well, polluting my blood, too, and it held me in its grasp so tight that I couldn’t see anything around me, or feel myself at all.
Eventually I snapped out of it. My mom thought it was because of the psychologist we went to once as a family when my parents were afraid that I wouldn’t be able to cope with my dad’s cancer. Really, that only made me angrier. I got so angry about the shrink, about everything, and I couldn’t be in that place anymore, so I changed. It was the most conscious decision I have ever made. I was so heartbroken by the fact that I couldn’t honestly call myself mature or compassionate even though ninety-nine percent of the time I was the epitome of these qualities. After I made that decision, I was so proud of myself for the first time in years for taking responsibility. I realized then that I had control over aspects of my life that my dad didn’t. I saw that what the cruelty of leukemia had taken from my dad in physical and mental strength was compensated for (and then plus some) with his love for me and my mom, and family and friends.
I have always denied that my dad’s cancer has affected me in any big way; it is just one aspect of my life. It is one zit on a face of porcelain skin, one C- amongst a hundred A+s. But I am kidding myself here, because although my life is happy happy happy, it doesn’t mean that some things don’t hurt. OUCH. What hurts the most is it not hurting the way it is supposed to. My fear of weakness and of the non-ideal hasn’t gone away. But I have finally learned to find other strengths in people and in myself. My dad forgave me a long time ago and I would finally like to forgive myself so that I can appreciate my dad for how cool he is. He’s no energizer bunny, but he has a zest for love and a love for life that embody exactly the santa-clause daddy of my childhood. I am not governed by cancer, but sometimes I feel it pulling me in a direction I would prefer not to go and thank God, thank Someone, thank Something, thank You that my dad is strong enough to pull us both the other way. And my legs are starting to tingle, pins and needles; I can feel myself feeling again.
Rebekah Liebermann