Tuesday, July 12, 2011

Living with Dying

A million things, a million decisions raced through my head as I stood in the ICU looking down at Marty.  From the moment we got to the hospital I started planning, I started plotting to find a way out of this medical morass.  My denial of the complicated nature of her hemorrhage was a wonderful thing; it kept me sane, looking too far ahead, seeing what our future might be was emotionally deadly.

The simplest things are often the hardest.  The simplest things can often make the biggest difference.  Finding a way to deal with one event, one crisis at a time, finding a way to live our new life one day at a time was and is the single most important lesson I have learned over the last years.  

It didn’t come naturally; I was in business and management much too long.  I wanted to plan, I wanted to see the future, I wanted to know, to anticipate what was going to happen next.  I’ve never been comfortable with spontaneity or inconsistency; I wanted to be able to commit to something, I wanted to be able to plan ahead.  I wanted the comfort of a predictable tomorrow, a predictable month, a predictable year, a predictable life.  That’s what felt natural, safe and comfortable.  That is largely incongruent with catastrophic illness.

 After Marty’s first stroke it was one procedure, one calamity, one setback after another.  There were no days without some crises, the unknown was the only constant and all I wanted to do was see a safe tomorrow and take her home and get back to a sense of normalcy.  I focused on the end game; I continued to plan for the days ahead only to be disappointed by constant setbacks and consequential disappointments, every damn day.  

When Marty had the second stroke I was a bit more accustomed to the vagaries of big time illness, though I still kept looking ahead, looking to the future, seeking a trail for both of us.  With the experience from the previous strokes I should have known better, I should have been better at living, planning, moving on a day-to-day basis. 

When we finally made it home from the second stroke I wanted to be in the comfortable routine confines of home.  I wanted to see, live and feel a regular life.  Instead we started living with endless trips to the doctor, the emergency room and the hospital.  

When I looked ahead at our life all I could see was a horrible illness that was destined to end in death, that the only relief from this turbulence was the end of my wife.  I sat waiting for Marty to get sick one more day, one more time to get so sick she would die.  I was sure the next illness would always be the mortal illness.  I lived and planed her funeral every day because that’s all I would allow myself to see.

It wasn’t an epiphany, the angels didn’t wake me singing one morning, the clouds didn’t part, I don’t remember THE moment when Marty and I started living our life again by living each day, one day at a time.  I made a conscious decision to quit living in a dark future and instead tried to live in the moment and enjoy those series of moments. 

When you are dealing with a catastrophic illness where death is the ultimate cure it doesn’t mean you can’t live, you can’t enjoy all of the minutes, all of the days, all of the months and years before that ultimate cure.  At some point you must start living with the illness, not dying from it, you must forget the future and live each day.   Focusing on the day, focusing on the moment allowed us to begin enjoying life, enjoying each other instead of looking to a future funeral.

The single best thing I have done since Marty got sick is living on a more day-to-day basis.  Developing some sense of flexibility, learning to accept the vagaries of the day, giving myself over to the reality of our life has kept me sane.  I know by focusing on an unknown future I was limiting the quality of my life and the quality of Marty’s life. 

I’m not saying don’t plan, don’t recognize reality.  You have to plan, you simply have to understand your life, you have to look ahead to find help, doctors, equipment, legal advice and the like.  You need to have a plan for emergencies, you need to have tools, you need to know where the fire extinguishers are, you need to know where the hospital is, you need to have a will. 

You don’t need to plan a funeral every day of your life, you don’t need to borrow trouble, everything that happens is not a sign of impending doom and in most cases death is not waiting around the next corner.  A friend of mine once quoted her doctor as saying, “Just because you hear hoof beats doesn’t mean its zebras.”  It’s not always the worst case scenario.

For far too long I lived worrying about the worst case scenario.  For far too long I lived too many procedures in the future, instead of very simply focusing on what was right in front of me.  It’s still a struggle.  I still tend to want to plan everything and commit to nothing because things might go bad.  When I do it robs both Marty and I of the beauty and love of the present.  I don’t know how many more minutes we have and I hate to waste any of them.

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