Thursday, May 28, 2015

On a Parallel Course to my Father's Death

"I'm not going to die, I'm not going to die...."  Such strong words.  How many other mothers have chanted this motto to themselves every time they thought about fighting the illness running loose in their bodies?  I cannot even imagine.  I cannot imagine how they felt as they descended further and further until there was no further to go.  In my case, I actually think I have a choice.  At least yesterday I did and tomorrow I probably will think so again.

I watched my dear, sweet father physically decline to death in a matter of a little more than three years.  Now due to a different illness, yet not completely unrelated, I'm on the same course.  However, I'm over 40 years younger than he was when he died.  He was an older man, a grandfather six times over.  For me, with two small and dependent children to raise and a husband to spend eternity with, I have no intention of giving myself over to this path quickly or easily.  At the same time, I feel helpless to prevent it.  It’s much too strong for me to battle successfully.  My own body declines every year in measurable increments that I cannot reverse.  All I have is the mental fight left in me to work with.  Sometimes that's not even enough.

My story began some time after my father, alav hashalom, turned 60-years-old.  He was diagnosed with Parkinson's Disease, a musculoskeletal condition.  This is something we share because I, too, was diagnosed with a muscularskeletal condition, but only a few years ago.  In my father's case, his main symptom started off as a hand tremor.  Other symptoms piled on over the years.  By the time he was halfway through age 67 he had to cut back on driving at night and he needed a lower bed to sleep in because higher ones were too difficult for him to get into.  Yet, he was the same exact brilliant, articulate, creative, easy-going, and dependable man we always knew and loved.  A while after he turned 68 he had some trouble cutting his food and performing other fine motor tasks.  He had also developed stiffness throughout his body.  Shortly thereafter he underwent elective brain surgery in March 2005.  This procedure involved implanting two deep brain stimulators into the upper front portion of his head.  Through the miracle of modern science the doctors were able to use these stimulators and a remote control to literally dial down my father's tremors and the stiffness he was suffering from.  The idea of these devices was that over time as my father's disease progressed he could visit his doctors and they could use the remote to adjust his symptoms for the better.  This gave him control over his disease as it was expected to worsen throughout the rest of his life, which we thought to be a couple more decades, at least.

Five days after his brain surgery my mother and I brought him home from the hospital.  We had no idea that he had suffered brain damage.  That night, a Friday, he slept in the bedroom across the hall from mine.  I was only there for a week to help during this fragile phase in his and my mother's life and was planning to get back to my own life and career in Los Angeles once he was settled.  I cannot write to the extent of what transpired that night.  However, I remember being so shocked and scared by his behavior that I ran into my parents' bedroom where my mother was sleeping alone and woke her up.  I shared the shock and anxiety and led her back to where my father was.  I closed my bedroom door to give them privacy.  When she finally left him to return to her room I ran back out into the hallway to talk to her.  I asked her, "What are you going to do?"  She didn't know, but she was determined to handle it no matter what.

I flew back to L.A. that Sunday, as planned, scared out of my mind.  It was like an overnight transformation.  My father as we knew him was gone.  Forever lost to us, yet here he was in the flesh just like he'd been the week before.  He was the same and completely not the same any longer.  I began mourning the loss of my father at that time as I processed the changes.  He'd always been the most competent and reliable person we'd ever known.  Now he was suffering from brain damage, hallucinations, and he wasn't consistently logical any longer.  During the day he seemed almost the same man we'd known, but he'd lost his edge and went in and out of these brain damaged moments.  The nights were the worst.  As time progressed the days began to match the nights, too.

Back at work in L.A. I gave notice to our executive producer, one of the kindest and most decent men in all of the entertainment industry.  It was a rare gift to work for people who inspired you to be loyal and driven and to feel appreciated by them.  But it was time to return to the East Coast where I was born and raised.  I would settle this time not in the suburbs of Philadelphia where I grew up and where my family was.  I had skills and a resume that could transfer the best to another entertainment town, which was New York City.  By train or car the ride to visit my father from there would be very manageable.  A few weeks later I drove cross-country to my family in time for Passover 2005.  During that 8-day stretch of holiday my father ended up in the hospital for emergency brain surgery.

And so it went on like a roller coaster ride.  Within nine months my father had a total of five brain surgeries, including the first one.  He'd suffered not just brain damage, but infections in his brain.  The damage was irreversible.  After the final surgery, when both deep brain stimulators had been removed, the doctor gave him back to my mother in a wheelchair.  He was not just mentally debilitated, but now physically, too.  It was overwhelming for all of us, especially my mother.  Her moods swung all over the place.

On the work front, I was an outsider to the entertainment industry in New York City and jobs are very tough to come by for outsiders.  There are far fewer of them than there were in L.A. and the locals protect their own.  I was fortunate to get a good job within three months of moving into the city, but once I became shomer Shabbat I was promptly fired.  Frequently before that job started and frequently after it ended I'd run home to Pennsylvania to be with my father and help my mother through the ordeal.  Even though I was in the middle of the turmoil alongside my mother, she had no one else to unleash her emotions on but me.  I was suffering already in my own way and couldn't bear the additional stress.  I decided to visit less frequently and go back to focusing on my career in NYC.  I ended up meeting my husband due to this focus on my new life.

But, the die was already cast.  When my father was returned to my mother in that wheelchair it set the tone for the rest of his life.  His mind was a cloudy mess and his body was barely obedient.  The rest of his healthy body, including all of his strong organs, ultimately declined to match his brain.  It took three years and two months before he passed away.  It was a slow, painful time for all of us.  Since I'd mourned the loss of my father so early on, I'd fallen into a state of acceptance, patience, and kindness.  I knew it was merely a matter of time until his body caught up to the damage in his brain.

At the very end when my poor father was in the hospital his doctors pleaded with my mother, tried to "reason" with her from their perspective, that it was time to pull the feeding tube.  A hospital is for someone who will get better, they explained to us, and he's simply not one of those people.  He's going to die so either expedite it here or take him home.  My mother contacted Hospice and hired care for him at home until he passed away on his own terms.  HaKadosh Baruch Hu above generously gave us another couple weeks to visit him at home and say good-bye.  He passed away quietly in the early hours of the morning on January 20, 2009 (24 Tevet 5769).  No one pulled any plugs or removed any feeding tubes.  It was the best way possible in my mind for his specific situation.

And that was the end of that long, sorrowful chapter of a brilliant man with so much good to offer the world having his brain taken away from him in such a way.  His greatest gift was his advanced I.Q. and that's the very thing that was lost in the years leading up to his death.

Never in a million years could I predict that my end would follow my father's path.  I mentally fight it every day and push my body to physically fight it.  I hold onto blind hope that I'll peel back the years and resume living the capable and strong life I did not so long ago.  But I feel myself crashing again.  This is the feel of what happens when I get worse in measurable increments each year.  No medication has been able to stop the advance of my illness.  No surgery will do much more than slow down what is already coming.  The book is not finished for me.  I still have who-knows-how-many years to fill the pages.  And I'm trying to fight as much as I can.  There is simply no control over what has unleashed itself on my body.  The path was already paved in front of me by my father.  All I can do is make it longer and windier for myself to get as far as I can in a way my beloved father could not.