Archive for category: Ambient Despair

THINKING THE UNTHINKABLE

16 Aug
August 16, 2014

 

buzz

 

With the tragedy of Robin Williams still fresh in my mind, I want to share something with you.

Suicide saved my life.

I mean no disrespect to the surviving family with this statement, nor do I seek to make light of another’s suffering. I’m simply recounting my experience.

In 1995, at the age of 45, and in the ascendancy of my life professionally, socially and spiritually, I was diagnosed with Idiopathic Parkinson’s Disease.

Today, nearly 20 years later, I look back in astonishment at the last two decades and wonder how I managed to not only survive, but to actually grow emotionally and creatively. Make no mistake: Parkinson’s is as ruthless as it is cunning – always searching for weakened neurological conduits and components; taking every opportunity to enslave me psychologically; making it more difficult to live with dignity and purpose.

How have I survived? I decided to fight. I made a covenant with myself, vowing to never let Parkinson’s get the upper hand.

And what is that upper hand? It’s attitude. It’s a focused resolve to live my life fully and joyfully, in service to my fellow man, regardless of how I might feel at any given moment. Does it always work? No. I fall down, literally and figuratively nearly every day. Yet, I don’t compound the falls with self-punishment. I simply get up and continue the journey.

And what do I  say about Mr. Williams? I say I can’t possibly imagine what life would be like with this disease AND a difficult marriage, a substance abuse struggle, the stress of fame, and the battalion of demons that often follow genius.

Have I ever contemplated suicide?

I never needed to.

Just knowing I could “opt-out” of the dark abyss of depression that is so often a component of Parkinson’s, was enough to prevent the act of suicide itself.  Yet, don’t for a minute think I was able to side-step the abyss – 18 ECT or “shock treatments,” 6 years of cognitive therapy, and 233,000 pills later, I’m still struggling with PD and my loss of the activities of daily living. (I’ve always said the true test of humility is having to ask a perfect stranger to wipe your behind.)

The circle now complete, we find ourselves back where we started: suicide.

My vision of the Creator, as insignificant as it is, does not include a punitive and vindictive father.

I choose to believe that at this very moment, Mr. Williams is enjoying  a ” Peace that passeth all understanding.”

The same Peace I wish for you.    Martin Bayne

SOYLENT GREY – The Sequel

15 Mar
March 15, 2013

soylent

After watching my brother care for his wife through her 12 years of Alzheimer’s, I can well understand why many caregivers die before their charges do. He said to me at one point that he had not had a single uninterrupted night’s sleep in five years. He was in his 80s, and refused to put her in the local nursing home which is dirty and depressing. He died shortly after she did. He sacrificed his life for hers.

As an avid genealogist I have many death records of my ancestors. Looking at those records is very revealing. Many had a mild chronic illness for several years prior to death but the illnesses that incapacitated them and led to death were brief, from hours to days. The amount of intense bedside care they required was short.

We now have the ability to extend that period of incapacity to years, and people need care for long periods of time. Through modern medicine we’ve extended many lives without regard for the quality of that life, or the quality of the lives of those who must care for them.

This is analogous to inventing the 2013 Mercedes Benz without building a road system, or the jetliner without airports. Today’s 30-60 year old is going to have to work well into their 70s to finance their 80s and 90s. At the same time many are caring for both children and elderly, infirm parents. There are no landing strips able to handle the onslaught of infirm elders who are just beginning to circle the airports, and no ground crews waiting to handle the baggage of their frailty and extreme vulnerability. We are apparently a stupid people or we would have placed skilled elder care in pleasant environments as a priority.

The word has always been that things would change when the “Boomers” hit the demographic, but as far as I can see, and I am a “boomer”, we have no more sense than the generations before us. We are allowing even the pathetic system we have now to be dismantled by the tea-sharks in Congress. Twenty years from now families will look back at when they could put granny in a nursing home as “the good ole days”, as they are forced to shoulder the burden of care alone after the demise of Medicare and the theft of Social Security. Invalided elders, needing medication and nursing care that are unavailable to them, will die quickly (and very conveniently – cheaply) at home, cared for by their exhausted families.

There is nothing new under the sun.
Deb

Incremental Victories

18 Nov
November 18, 2012

The first time I saw William, two years ago, he was sitting alone in the dining room. Tall, gaunt and haunting, he reminded me of pictures I’d seen of men at Auschwitz, Bergen-Belsen and Dachau. His eyes, sunken and non-expressive, looked straight ahead and he stooped slightly when he walked – something one would expect after 95 years of gravity pulling against the spine. Yet his most prominent feature was neither physical or even emotional, but  existential, as if the forces of darkness and light waged a continuous firefight inside him.  And although no bars or cells restrained him, he was isolated and imprisoned just the same. In the months that followed I would learn his isolation was self-imposed,  born of anger, resentment and frustration, but I have my own demons to wrestle, and there are only so many hours in a day.

Until just four weeks ago, I never saw him smile or engage another resident in conversation. His modus operandi – like  most assisted living residents – varied little from day to day, and over time he had devolved into a group of organs, connective tissue and cell clusters — his only real bridge to his fellow human beings were the three times each day meals were served in the dining room. Yet even then, he would always eat in silence, by himself. Always by himself. After eating he would typically return to his room. Sometimes he would sit in the lobby and read the newspaper or merely sit quietly staring off into space, but always with a sadness he wore like a dark and heavy cloak.

Even his clothes reflected his apparent contempt for himself and the world around him. Every day, William wore the same tattered pants and shirt with a light blue cardigan sweater as colorless as he was.

And for years, that’s how William lived — a sad and broken man who carried loneliness on his back like a heavy sack of stones.

Then, one day, he had an awakening – a miraculous series of events that brought peace and joy into his life like an explosion of wild flowers in the spring – a miracle that began with a simple act of kindness from another resident – and like all miracles, an expression of love.

It all began roughly six months ago when I  approached William in the hallway on his way to lunch. I angled my wheelchair to intercept him as he entered the dining room.

“Hi.” I said, not knowing what to expect. He  ignored  me as an elephant would a tiny insect and continued to stare straight ahead without saying a word. This continued for the better part of five months.

Then, one summer morning, as we made our way to the dining room, and I steered my wheelchair toward William, he suddenly stopped walking, turned to face me and whispered, “Hello.”

At that moment, as I’d practiced it a hundred times. I raised my hand, and to my utter astonishment, he  accepted it and smiled as we shook repeatedly.

Too excited to eat, I went back to my room, grabbed my video camera and returned to the dining room. I waited until most of the residents had finished their meals and left, then approached William.

“As you may know,” I said, “I’m building a video biography of all the residents. If you don’t mind, I’d like to ask you a few questions. It will only take 10 minutes.”

“OK, was all he said, and within seconds I had the camera recording his every word.

“What was the proudest moment of your life?” I asked, and he chocked back tears and said, “The day I married my wife, Elma. She’s gone now and I miss her terribly”

“Children?” I asked, and with a raspy, strained voice he nodded, “two boys – Ronald and Charles”

“Get a chance to see your sons very often?” I said.

He looked into my eyes, and without a single word, I understood the depth of his sorrow.

He then recounted the time spent during the war on an aircraft carrier, manning an anti-aircraft gun, and before I knew it, I had used up my 600 seconds.

It was probably the first time in a half-century he talked with anyone so openly, and as the digital components recorded the event, you could almost feel a catharsis building. It was as if William was sitting on layers of tectonic plates deep within his psyche. And as they began to shift, the structural pylons of a great dam gave way, and rushing torrents cascaded down long spillways.

When I turned the camera off , William asked for tissues as the tears ran down his face.

Today, William is a changed man.  He sports a new set of clothes and his smile is as authentic as it is infectious.  Now, at the end of every meal,  I walk to William’s table to shake his hand. a tradition that has become as important as the food itself.

And we have bonded like father and son.

It has truly been one of the most remarkable experiences of my 62 years on this planet.

Yesterday, there was  a visitor who joined William for lunch. “Isn’t that’s great,” I said to the women I share a table with.

“Not necessarily,” one of them said, “His visitor is a hospice nurse.”

I managed to make it back to my room before the swell of tears blurred my vision.

I know how this story ends:  I’ve been in this place too many times; seen far too much pain and watched too many people as they are lowered into the ground.

Now, I can only wait, knowing that when William dies he will take part of me with him.

And I will take what’s left, stuff my grief  in a place inside I no longer talk about — or search the hallways for someone else to say “Hello” to.

-Martin Bayne-

A Room With A Grim View: The ‘Ambient Despair’ That Marks Life In Assisted Living – by Martin Bayne

12 Jul
July 12, 2012

 

People my age—I’m now sixty-two—might go to an assisted living facility every now and then to visit an older family member. Facilitated aging is a way of life for a growing number of Americans, more than one million of whom now live in roughly 40,000 such facilities across the country.  – Martin Bayne

link to full article

 

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