Six years ago today, my father passed away.
Our anguish changed to relief - his suffering was over at last - then back to the grief we'd known for several years as it had gradually become obvious that this much-admired, larger-than-life figure was slipping away from us, one chunk of his central nervous system at a time.
Two years earlier I had found the answer to the questions our family physician and then the cardiologist had not been able to answer. The Internet provided a diagnosis, then we found a neurologist who confirmed it: Shy-Drager Syndrome, also known as multiple system atrophy.
I also found a support group online, where I happened to post something I had read in the medical literature. The particular type of vivd but non-threatening hallucinations of small creatures, which my father experienced almost daily, was actually common among sufferers of this disease. Although most people described them as leprechauns, my dad always called them the Little People.
When I described the antics of these imaginary beings - which my storytelling father loved to recount in great detail - e-mails began to arrive in my inbox from caregivers grateful to be able to talk with another person who understood. Suddenly they weren't alone anymore. And neither was I.
One day, a few months before he died, I sat at the computer and began to pour out my thoughts about my dad and the Little People who entertained him. What came out was more poetry than prose, and we wound up printing it in the memorial leaflet for Dad's funeral.
I miss you, Daddy. Are the Little People with you in heaven?
The Little People
I never thought I would find such humor
In the hallucinations of a dying man.
His body grows feeble, his brain withers
From the ravages of a cruel infirmity.
“Can you say ‘neurodegenerative’?” I tease him.
“Not even when I was well,” he replies.
Each day my father recounts for us
His adventures with the Little People.
He doesn’t know what else to call
This myriad of unidentified beings
That populate his waking dreams.
He understands that no one else
Sees them or hears them—
Knows they are not real,
Yet is powerless to make them go away.
Only one of them ever speaks to him—
Steve, he calls their ringleader.
One night the Little People showed up
In Dad’s bedroom at the usual hour.
“Go away,” he told them. “I need my rest.
And don’t come back for sixty days!”
The next night the Little People were back.
“I thought I told you to go away,” he said.
“It’s okay,” Steve replied.
“We don’t take up much room.”
I guess that’s why they’re called the Little People!
Evidently wit does not reside at the neuronal level,
For my father has not lost his keen sense of humor
Even as the disease continues to destroy
His autonomic nervous system.
Or perhaps his ability to still crack a joke
Is simply a gift of God’s grace
To a man and his caregivers,
Who have so little to laugh about
As we wait for the mercy of the inevitable.
When the time comes,
I’m thinking of asking Steve
To say a few words at the funeral.
I’d hate to exclude Dad’s little companions
From the celebration of his voyage to heaven.
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