Remembering the Sadness in His Eyes (On Sufffering)

Noubar and Seta

My uncle Noubar died in the summer of 1989 from complications due to Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's Disease.

He was fifty one years old. 

Prior to that, Noubar had been bedridden for years as the disease slowly stripped his motor control and speech.

The morning of his death I awoke to the sound of laughter, walking into the living room to find several of my dad's friends talking and taking shots, stopping momentarily to inform me of the news, then continuing with their activity.

I did not take the news well.

Their laughter infuriated me. I though it was disrespectful. Then I though about my cousins, about their their loss and what was to come next. Unable to imagine anything I began to cry.

I was not yet equipped with the tools to process death, nor did I understand that my father and his friends were doing just that by celebrating the man Noubar was.

That morning remains vivid, though other memories do not.

When I try to recall Noubar prior to the onset of his symptoms the memories do not present themselves. I am unable to remember him as healthy and active, but am certain that I do so when I was a child.

Instead my memories of Noubar are of him incapacitated in bed.

I remember the quiet of his room, the awkward feeling as I said hello and unsure if my presence was welcome. I remember the sadness in his eyes as they followed me, first when I would give him a hug and a kiss, then as I left the room. 

Recently my thoughts have focused to that time, to that man, to the terrible circumstance that was bestowed upon him, forcing him to slowly slip away. I try to imagine his pain and frustration as he lost his ability to connect; effectively ceasing to be a husband and father, unable to communicate, unable to be in their lives, unable to be.

I wonder about the inner world he forged.

What methods, if any, did he use to cope with the monotony of his days? Was he able to exercise his imagination? Were his dreams free from the anger and misery that he surely felt in his waking moments?

Was there hope within him?

As I dwell on these thoughts; try to understand them, the more I find it is unimaginable. Noubar was given a punishment undeserved; living out the sentence for years as the disease took him piece by piece.

Noubar's fate can be anyone's and it frightens me.