Monday, December 31, 2012

Living Life. Right Now.

I have a collection of books on my nightstand that are all currently "in process," meaning, I still need to finish them. I get so excited about new books that I have a difficult time staying committed to the one I am currently reading before beginning another. But eventually I go back and tie up loose ends. I go back and finish the books I have started. Tonight, that was what I was trying to do.

The book came highly recommended. In fact, I think it was required reading for an entire school district staff. The Chemistry of Calm, by Henry Emmons, M.D., offers a holistic, drug-free method for dealing with anxiety, fear and worry. I started reading it back in August when my new job in Advertising had me feeing anxious a lot of the time. I remember taking copious notes on all the vitamins and supplements recommended for balancing uneven brain chemistry (so all it's gonna take is some Omega 3 fish oil, Vitamin D3, Magnesium and Taurine to make my mind shut up?).

Tonight I picked up the book and committed to banging out the last 50 pages. I was lying in bed, skimming over one of the Mindfulness Meditation Practices. This one was on Compassion. It gives you bulleted instructions:

  • "Get into whatever position you wish, using a chair, cushion, or bench...
  • Sit with awareness of your breath for a few moments..."

When I got to bullet points 6, 7, and 8, I stopped.
I got stuck, a lump that started in my chest got lodged in my throat.

  • "Now bring to mind someone who you know is struggling in some way. Let the image of this person become very clear in your mind. Invite that image into your heart.
  • If you know the nature of the person's suffering, hold that awareness without judgement. Remember that all of us struggle in similar ways.
  • Try to fill your awareness with the wish that this person may be released from his or her suffering."
Try to fill your awareness with the wish that this person may be released from his or her suffering.

My dad.

Once I read this passage I got completely stuck. First of all, No, all of us Do Not struggle in similar ways. Very, very, very few of us know what it is like to "struggle" living every second of every minute, every hour of every day, and every week of every year - three and a half years - as a quadriplegic, unable to speak. No, none of us really knows what it would be like to be stuck inside a body with sound mind but with motionless flesh. None of us, except for my dad.

This holiday break has been a strange mix of pleasure and quiet angst for me. My beautiful, smiling, giggly nephew Sam has added joy and love, colors and warmth to a brittle, brown and grey situation.

It's hard to go over to my parent's house and uphold an inner dichotomy of joy and the other thing. I don't know what to call it. It's not despair. That was more Year Two. Shock and Grief were Year One. What do I feel right now during Year 3.5?

Tonight, what I felt was dread. 

The dread is attached to a specific fear that creeps into me on occasion. The thought sneaks up on me and chokes me in seconds. The fear literally makes my chest hurt. 

What I want to explain is awful, but it is the truth. And for some reason I feel compelled to write about it tonight because I felt it in my chest and sometimes it seems like there is no place for it to go but into typed words out into the indifference of the Internet. 

I am afraid that my dad will die and only then will I recognize how much of a gift it was to have him here, even in his very altered state. I am dreading the feeling I will have – incomprehensibly missing him. Not the old dad, but missing what I have with him right now. I picture my future self choking with guilt and regret, wishing I had spent more time in my dad's silent presence, just being with him.

The thing is, I never really feel like I am doing the very best I can when I am with my dad. I try to read aloud as many chapters as possible out of his WWII book, I try to act as calm and as easy breezy as I can when I see silent pain in his eyes. I try to communicate with my dad and dig to the depth that we had pre-July 2009 – which is the hardest thing because I had the best relationship with my dad. A deep, powerful river of communication and knowing flowed between us. It always did, since the day I was born. I was always his Girl.

There is nothing that can be said or done. No matter how many good days, special smiles, or knowing moments that pass between the two of us, I can never get enough. I live life looking over my shoulder, worrying about the future and missing my dad once he is gone. 

The fact is, in relative terms, my dad is very healthy and very much alive! The problem is, for as eloquent and intelligent we humans fancy ourselves to be, we are pretty inept at transcending the loss of movement and speech in another human being. How do you go on? How do reassure that altered human (that dear father of yours - your favorite person you've ever known), that he is still accepted, still normal, still himself, still "Dad?"

I do not know the answer to that.

However. As it turns out, there is someone who does.

That person who knows is too young to comprehend what is "normal" or how life "should have turned out." That person has zero lofty expectations for cheerful chatting or even physical movement. As long as his fundamental needs are met (sleep, food, love), he pretty much gets what life is all about.

That person is Sam. Sam knows. 

On Christmas Eve, I watched from behind my camera lens as my little nephew crawled over to my dad's wheelchair, stood up on his tippy toes, and gently touched my dad's arm. It was one of those moments where you can't believe what you are watching, so you just keep snapping photos, knowing you will have to process it later.

Behind me, I could hear the soft, bittersweet tears of my mom, my brother, my sister-in-law, my aunt. We all just watched as Sam joyfully tip-toed around my dad, cooing "Baba...Baba" which is one of his three words (Mama, Dada, and Baba – his stuffed toy sheep).

Sam's little hand touched my dad's arm with a knowing and a profound non-judging. To Sam, he's simply Grandpa Chuck – not a tragic situation, not an ambiguos loss – it's just Grandpa Chuck sitting up in his chair on Christmas Eve. I watched Sam looking up at my dad and for a moment I saw the other-worldly spark that only exists in the eyes of the very old and the very young. The look Sam has carries with it a deep, confident Calm. The look Sam has says, "Hey, chill out, Auntie Susan. It's Baba! It's Christmas!

Perhaps the Young and the Old still remember that Life is only one stop on a much bigger, better spiritual journey for all of us.

So, I am going to trust my little nephew and follow his lead. On days when I dread my future regret in the inevitable loss of my dad (as we all will with each of our parents one day, as each of us have for parents who have already gone), I will try my best to remember that living life is about living life right now. I will try to remember that Life is just one piece of something that is much bigger.

And so here at the close of 2012, I am living life with my dad, just the way he is. Right now.


  1. Thank you so much for sharing your rich, complex, incredibly moving, and so eloquently articulated feelings with the nameless (or not so nameless) internet. A good call late at night. You inspire me, Susan!

  2. Beautiful. Sam knows best. I know I said this before, but it truly is a gift that you and your dad still have each other. Cherish it every day.

    "A deep, powerful river of communication and knowing flowed between us. It always did, since the day I was born. I was always his Girl."

    You can still have this relationship...just in a different are and will ALWAYS be his Girl, Susan. And he is and will ALWAYS be the dad you've always known.