Wednesday, December 30, 2009

Silent Night In Purgatory

It's funny how a temporary habit can turn into a normal behavior. I believe they say it takes 21 days for a habit to stick. For me, in the past two months I have developed a habit of not writing.

The habit began back in October when I couldn't decide whether or not it was appropriate to continue updating my Facebook profile with news about my critically ill father. Creating status updates like, 'My dad made a sound' or 'My dad is weaning off his ventilator' became too much of a burden for me. What if I gave the wrong impression about his progress? What if I confused people in trying to explain the bizarreness of his condition?

In November I attended my 10th year high school reunion. I was shocked by the number of people who knew about the nightmare we have been going through with my dad. I didn't even have time to worry about saying, "Nope, still single" and/or "No kids yet" because I was overwhelmed with the collective knowledge that something has gone horribly wrong in my life.

Now that I have fallen out of the writing habit, I am having a difficult time falling back in. I'm pissed about that. I used to karate chop my key board for a fast half hour, then take a break for a cigarette before an excited, frantic edit and hitting the 'publish' button. Now, my anxiety-ridden nicotine-free brain chugs along with the speed of a wooden abacus as I choke on the words, thoughts and feelings that need to get out.

Wading through unending trauma for an extended period of time has made me timid. I am shy and uncertain about sharing my life through writing. At one point, I nearly deleted my blog, and then I compromised by simply hiding some of the writing that no longer felt comfortable for sharing. I've considered changing my tagline which promises to make fun of myself, make fun of life and make you laugh, but I am leaving it as a reminder of my silly stories full of swear words from before.

My Facebook site has become a silent ghost town with tumble weeds rolling over the old profile picture of me and my dad. Every once in a while I log on to read through the status updates of others. It feels foreign and fascinating to read about the banalities of everyday life. I wonder what it would feel like to be "So glad it's finally Friday!" or "Up to the cabin to enjoy all the snow."

These five months have changed me in a way that I cannot explain. I cannot explain it because I am not finished changing yet. All I know is that I need to force myself to keep telling this story.

And so, we begin...

Most people do not know about what really happened to my dad.

On July 23, 2009, my dad had surgery to remove a cancerous tumor in his colon. He made it through the surgery beautifully and had what seemed to be a perfect and speedy initial recovery in 72 hours. Little did we know that the location in his intestines where the surgery took place began to leak internally. It leaked for days without us knowing. This was a very rare thing to happen.

My dad ended up in the hospital for emergency surgery to fix the leak. That was on July 30, 2009. That was when all hell broke loose.

As a result of the leak, my dad's body became severely infected with sepsis. His temperature spiked to 105.7 degrees and his blood pressure plummeted under 60. He could not wake up from the drugs he was given and he had to go on life support. Multiple doctors have said it is a miracle he survived the sepsis.

We spent over 40 days in the ICU, waiting for conditions to improve. My dad could blink his eyes and squeeze our hands, but he was otherwise silently burdened with many wires and tubes, including a big ventilator hose down his throat. We did not know at the time that as my dad's sepsis infections and surgery wounds were healing, a much more vicious health condition was lurking. It was something we had never heard of and it is the equivalent of what I would call hell.

As a result of going through the severe sepsis, my dad developed a condition known as Critical Illness Polyneuropathy. It is similar to a disease called Guillian-Barré Syndrome. Essentially it is a neurological disease that damages the nerves. When the nerves become damaged, the muscles can no longer move and the patient becomes paralyzed. In cases as severe as my dad's, a ventilator is used to help with breathing.

There is no cure and recovery is not certain. Recovery takes years as the nerves grow back (at the rate of one millimeter per day - that's about one inch per month). There is very little known about this illness and patients like my dad require a lot of care. In September he was moved to an acute long term care facility and we visit him every day.

So, the easiest way to spell it out is this – My dad is now a quadriplegic with an unknown future. He cannot move his body, yet he is completely aware of his surroundings and situation. He cannot talk, he cannot eat and he cannot breathe on his own. He can move his eyes and vaguely turn his head up and down and side to side. That's it. Otherwise, he is confined to a hospital bed and requires round-the-clock care.

Today is the five-month anniversary since my dad's emergency surgery. The night before his surgery was the last time I heard his voice.

There have been so many times in the past two months when I thought I would write. I thought I would write about watching my dad cry when I told him about getting my car fixed without him. I thought I would write about decorating my dad's hospital room with lights and a small Christmas tree. I thought I would write about standing over my dad's bed, arms crossed, and waiting for him to wake up, just like I did when I was a kid and it was storming outside. I have thought of writing about these experiences and more in the hopes of sharing and releasing my pain.

But when you are a caregiver to a loved-one, you are constantly tired. You are never home. You are always behind at work. You wear the same ill-fitting pants and warm boring sweater over and over and over again. So, it makes it hard to write.

But I want to leave you with two things, and for me, both of them sting.

One of the things that will haunt me at the close of this holiday season is the tune of Silent Night. My family and I refused to skip Christmas this year, so we played holiday music in my dad's cheerfully decorated hospital room. Whenever Silent Night came on, my dad would look at our family pictures on the walls and he would look at us then silently cry. This unleashed inside of me a river of icy cold unfathomable sadness. Each time this happened, I would reach up over the tall railings of my dad's high-tech hospital bed and all I could say is, "I know dad, I know." You see, my dad is Christmas. It is his favorite time of year. In his absence, we managed with an artificial tree at home, but you can imagine how tough it was for us to fake it.

There is a park near my house where my dad and I used to go. We used to take our dog, Kodi, there. When Kodi passed away suddenly, my dad began walking in this park every single day. A few days ago, I went for a walk in this park. The snow was deep and crusty with ice. During parts of the trail, I saw images of my dad and Kodi. I imagined their breath making clouds in the air and it struck me how strange it felt to be visiting a place where two special beings were profoundly absent. The name of this park is 'Purgatory.'

I cannot get the tune of Silent Night out of my head, and I keep pondering the meaning of Purgatory. If it is a place of waiting before moving on to something better, then I surely feel stuck in it. My dad is consciously frozen and I am not much different – dragging through each day and finding it exhausting to make decisions about the simplest things. I enjoy the reprieve of sleep but then I muscle through the anxiety and disbelief of each morning. Taking showers and picking out outfits for work just sucks.

I do not know the end of this story, but someday an end will come. Until then, I need to continue to reach out and communicate about it while I wait... and wait.... and wait...


  1. Susan,
    Nikki passed along the link and I paid a visit to your Purgatory. I'm sorry life is impossible right now. Your writing - your expression of its impossibleness - is magic and precious and fresh. I hope you find energy to write often and humorously - potent medicine.
    White light to you and your dad.
    Kitty Baker

  2. Susan,

    I am glad you are back (to writing). We visited your mom yesterday and had a great time. I appreciate the opportunity to share in your story.