Tuesday, June 28, 2011


I walked by my dad's room tonight and his nurse was reading to him. She was reading out of The Catcher in the Rye.

I stood back in the hallway so that he could not really see me. I watched his eyes as he looked up at his nurse. She was touching his arm on and off to give emphasis to certain phrases. My dad's expression was concentrated yet serene. He was listening to the story. 

It was a peaceful moment between patient and nurse, a moment of intellect and quiet beauty shared between two human beings.
And it made me jealous as hell.

For a moment I lost all gratitude for our brilliant nurse, and I stood there fuming at the fact that I was working on a report for my job while this girl got paid to hang out with my dad. Earlier in the day, I heard the electronic voice of my dad's DynaVox eye gaze software. The nurse was practicing with my dad, assisting him on the long journey toward learning a new form of communication while trapped inside a motionless and voiceless body. This DynaVox practice made me jealous, too. I wanted to ditch my work emails and go practice communication with my dad.

But communication with my dad has been tough, because I am never here. I cannot completely blame that on work or travel or even his medical state. It is just life that gets in the way. When things were more dire and my dad lived in the hospital, rehabilitation center and nursing home, I connected with him more. I sacrificed most of my own life priorities and focused exclusively on his. There were times when my dad and I connected then. Times when, despite all the medications, tubes, tests, and terrors, I could look into my dad's eyes and feel like I was helping him. Those were the times when I felt like we completely understood each other.

We all speak delicately to my dad, because in a world as unimaginably uncomfortable as his, times of serenity are sacred. When a person is not able to speak, you tend to talk in the same manner that you would speak to a young child. And no matter how creative or confident you are, it is virtually impossible to maintain a one-sided conversation. A pair of piercing blue eyes stares back, and that can intimidate even the most seasoned conversationalists. In this I am, of course, speaking of myself. 

My dad used to come to me and talk about the ups and downs of life, and I know that he felt guilty about the potential of over-sharing with his kid. I remember my dad telling me that it was the same for him with his own parents. They would have in-depth conversations with him about life issues far beyond his years. It was his skill for listening that drew them in and his knack for synthesizing data that kept them hooked. I think just as my dad was a child-sounding board for his parents, I was the same for him. 

This is part of what makes the current scenario so cruel. To have my dad right there, looking at me, and me feeling too tongue-tied and scared to break into a new form of one-sided conversing. For the nurses, it is different. They have only known him this way. They are able to create special bonds and inside-jokes that only exist in the world of half silence. They are able to do this freely, but I am still holding on to the memory of my dad's voice.

It is a late night of working for me. I am so exhausted and so desperate for some upcoming extended rest. A phone call from a friend shook me up, because I was told the infamous words, "Cheer up." I've been told that before in life, but it takes on a different meaning now, when I am carrying the invisible load of my dad on my shoulders. I carry him everywhere. I carry him onto airplanes and I carry him into meetings. I carry him with me at weddings where fathers and daughters walk down the aisle and do father-daughter dances.

My mom came into the living room to check on me. Since returning from India, I've received an extra dose of love and care from those who see how tired I am. 

"How's it going?" she said, with the interest and care that only a mother could conjure up for her kid's millionth PowerPoint presentation.

"Fine. But I was told to cheer up and it made me feel like I'm a downer. Am I?" I asked.

My mom looked at me and got a little teary eyed. She proceeded to release one of her spontaneous and inspiring, out-of-nowhere pep talks that could only come from a woman who has been through as much as she has. I listened to her and felt the instant relief that is so rare in life, the kind of relief that can only come when you are lucky enough to receive the perfect set of words for the occasion at hand. I had my blog open when she said it, and I was tempted to take notes. But what I do remember verbatim made me feel less critical of myself. What my mom told me was this:

You know, one thing you have to remember is that this is really, really hard. We are doing an extraordinary job in a very difficult, on-going situation. This might be inspiring for some people and it may have affected their lives in a positive way. But there is nothing good in it for us. The fact that we get up everyday, we tell jokes and we go about our day, that's amazing. Because no one will ever know what it's actually like. 

I stopped feeling jealous of my dad's nurse about five minutes after the reading encounter. I'd gone into his room and made my usual surface-level chit chat. 

"So. You two are reading The Catcher in the Rye?" When I heard the sound of my voice, I was embarrassed at the obvious envy placed in the statement. Reading was my thing to do with my dad. But I had stopped the ritual, months and months ago, when his temperament and emotional state became entirely unpredictable.

My dad looked straight at me through half shut eyes. He was obviously sleepy, yet aware of me standing before him in the present moment. He probably knew. He probably knew what his daughter was feeling. He probably could see how a 29-year-old nurse could be threatening to his 30-year-old daughter, as though there might actually be some competition for the "Chuck's daughter" position. 

I do know that no one can compete with me. I do know that, no matter what, I am Chuck's one and only daughter. I am deeply, entirely grateful for his exceptional nursing team. I continuously acknowledge the fortunate luxury to have these women and men to look after my dad in the comfort of our own home. It is a gift to have someone like his nurse who understands him enough to know that reading to him matters.


I just walked outside and I looked up at the night sky. The stars are out. I watched a satellite slide by, efficiently circling the Earth. On days when work and responsibilities take over, I notice nature more. It grounds me to watch leaves move in the breeze. I am lulled by the sound of sprinklers and lawn mowers.

Tonight, I will not judge myself for having compromised priorities. 

No matter who you are, and regardless of your individual responsibilities, sometimes you just have to ease the pressure off yourself a bit. We guilt ourselves for not spending enough time with our parents, our children and our significant others. We feel bad about living far away or about living close and not taking advantage of it. We lament over not getting enough exercise and we obsess about eating the wrong foods or not eating enough of the right ones. We fret over unknown futures and underdeveloped finances.

We debate over our next hairstyle.

Someday I hope to learn how to detach, even for a few minutes. The weight of maintaining the Self is tiring. I think it might be one of those things where the less you try the easier it becomes. But until then, the responsibility of looking after one's life priorities can be exhausting. 

I'm not going to worry about my dad right now. I'm not going to marinate in guilt over the fact that it is coming up on two years and I still have not developed an effective new relationship, complete with extracurricular books and in-depth communication. In time, it will come. 

At least for right now, my dad and I can still look at each other's faces and smile from time to time.

1 comment:

  1. thinking of you all the time.
    miss you all the time too.