Tony A
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Unfortunately,this is all too common a story.  Here is a link to the story of Meg Kissinger's family.  It offers additional perspective on the issues surrounding illness and its toll on families.

 

 

 

The Demons On His Shoulders

He didn’t have a Jiminy Cricket; instead it was The Two Demons that sat on his shoulders. They took turns tormenting him. Day and Night, High and Low, Up and Down, Good and Bad? He didn’t know what their names were, he just knew that they were there all the time, their voices, first in one ear, then in the other, back and forth they screamed at him.

"I am the whirlwind and you will ride me. Past mountains, over oceans yet untamed we will flash. No comet can touch us. Like Superman we will circle the world a million times in a heartbeat, reversing time itself, untouched, untouchable. Faster! Louder! Dream and we will do. You are a blazing spark of creations essence."

"You are nothing."

"Faster, louder, ignore the voices of mere mortals, they know nothing, you are above and beyond. They only mutter in jealous fury. They seek only to destroy your brilliance, to shackle you in their plodding pace."

"You are nothing! He is my brother and delights in your folly. He mocks you. He despises you. I despise you. All whose eyes fall upon you see only a pathetic, empty shell – a passing shadow that will never brush the fringes of their interest. You are the least and most useless of my playthings. Despair is your only companion for none else will have you."

"Come! Up - Up, and away! I have a plan – dazzling in its breadth, breathtaking in its brilliance. All will marvel. The world is yours. Sleep? Quiet? Peace? They are only illusions. Forget them. Reality is our fiery path and the wind stinging our eyes to tears."

"You are the smoke of yesterday’s campfire on tomorrow’s wind. Your life is naught. I am despair, your only shepherd. And I devour, morsel by morsel, your very soul. It is my fodder and I will consume it all in my own time."

"There you are, lagging behind again. The surf is up – tsunami awaits. We will tame its crest."

"Neither of us cares one whit for you; neither my brother nor I, and no one is as close to you as we are."

"What’s the matter? Here we go, we will build a nation, invent the warp drive, be the superlative."

"Grovel in the knowledge of you own limitless insignificance. Wail and beg – it amuses me."

"Walk on water!"

"Drown in despair!"

"Trust no one but me."

"Trust no one but me!"

They had been there for as long as he could remember, those faceless wordless voices, whispering of despair and goading mercilessly to a kind of mental frenzy. Wordless they were, yet a constant and irrefutable presence – shadows that moved with him like his own, never to be denied.

How could he describe the pain to anyone who did not live it like himself? Were there others? He couldn’t even remember the day when he first realized that everyone didn’t share their souls with shadows that tossed existence back and forth between frenzy and despair. He told his parents, but they couldn’t understand – they simply had no frame of reference.

That their love and their concern could not penetrate the stifling mists of his private hell caused him only more anger and pain. He knew they loved him, saw how it hurt them to face the reality that they couldn’t protect him from the turmoil within, and began to let slip the hold on even that relationship.

Friends didn’t stay long in his life. He had a lover once, but that love finally turned in revulsion, fear and rejection. They had a child, but gene sequence was the only bond he shared. Somehow he seemed to sabotage every job he landed – a series of progressively less responsible jobs for progressively less pay.

If it was a disease, he thought, why can’t I take a pill for it? Isn’t there supposed to be a vaccine for everything? The medical establishment simply can’t be trusted, he reasoned. Either they don’t have a clue or they are just out to kiss me off because I don’t have insurance. His parents found him a Doctor and paid for the prescriptions. But he wouldn’t give it a chance to work. His parents cried out in pain when he again refused their help.

Cars, clothes, gadgets, and other things just weren’t important beyond the moment, because things are like relationships and require focus and discipline. You have to sustain interest and care for them. Focus and discipline could never break through.

There were regular times when he knew something like peace for a while, but those moments were cruel reminders – mirage oases in the desert of his disease. During those moments he tasted the love of his family, saw his life in something like "normal" perspective, and had opportunities for introspection about his disorder.

If anyone had asked him how he could let the despair take him when he knew it was only a disease, he might have said, "How can you let the migraine cripple you when you know it’s only a headache? How can you let the cyclone toss your house to the next county when you know it’s only air?"

Over time the torment intensified, mocking his attempts to dig in, to reconnect. Deeper and deeper into his soul it burrowed, and neither a few days of medication nor family concern nor reason could contain its remorseless throb.

Someone suggested cocaine. Perhaps he even knew that Sigmund Freud himself had the demons on his shoulders, and kept them at bay with cocaine. He found a source and in the cocaine, and perhaps in other dark concoctions, found temporary surcease. The crash when the drugs wore off, (all too soon), was unbearable, but the relief was like water to a parched tongue. He just didn’t realize that every crash was a bit worse.

He didn’t realize it until one day when the crash left him paralyzed with the anguish of his demons. They danced on the most tender parts of his soul, gnawing greedily at his very self. It was a pain of the soul as searing as any bodily pain. Talking would be useless. More pain, now and tomorrow and the next day, would be unbearable. Cocaine was a false promise. Medication seemed a farce to him. Somewhere beyond reason, beyond logic, beyond faith came the thought that aspirin relieves pain. Something else to try? A way to find permanent peace?

Over time they had become louder and louder until he could see only one way to silence them.

      The demons know neither reason nor logic nor peace.

Do not try to understand them.

…They are gone now….

 

 

For my son, Anthony (Tony)  – November 22, 1972 – November 11, 2001

Love,

          Daddy

 
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Last modified: 12/03/08