ALS: The Musical
The spark of inspiration for column topics sometimes comes to me from surprising sources. Last Saturday, with my submission deadline looming, I had nothing … nada … bupkis. Fearing I would to have to forgo my weekly passion, I passed the time reading, with some music playing in the background. Suddenly, inspiration jumped out from an Elvis Presley hit. I realized that my ALS saga could mostly be retold by borrowing from song lyrics.
One day I noticed:
My hands are shaky and my knees are weak / I can’t seem to stand on my own two feet
I finally sought medical attention:
I said “Doctor (Doctor), Mr. M.D. (Doctor) / Now can you tell me what’s ailin’ me?” (Doctor)
The end / Of our elaborate plans, the end / Of everything that stands, the end / No safety or surprise, the end.
My initial reaction:
When logic and proportion / Have fallen sloppy dead / And the White Knight is talking backwards / And the Red Queen’s off with her head
Then, I wept:
Tears of rage, tears of grief / Why must I always be the thief? / Come to me now, you know we’re so alone / And life is brief
Anger took over, and I wanted to mount a fight by borrowing Maxwell’s Silver Hammer or employing Roland the Headless Thompson Gunner.
If I had a rocket launcher…I would not hesitate
Expert response to my rage:
Why are you obsessed with fighting / Times and fates you can’t defy?
In that instant, I considered that:
I don’t want to start any blasphemous rumours / But I think that God’s got a sick sense of humour
That dark moment was interrupted by an angel:
She walked up to me so gracefully and took my crown of thorns / Come in, she said / I’ll give ya shelter from the storm
I resolved to:
Wake up from an elusive dream / You’ve got to change the scene / It’s getting so hard to see to the end / Break down, all of the walls you can
I’ve tried to avoid the trap:
Don’t it always seem to go / That you don’t know what you’ve got till it’s gone
I began capturing mental Kodachrome images:
They give us those nice bright colors / They give us the greens of summers / Makes you think all the world’s / A sunny day
I tried to see the glass as over half full:
Grab your coat and get your hat / Leave your worries on the doorstep / Life can be so sweet / On the sunny side of the street / Can’t you hear the pitter-pat / And that happy tune is your step / Life can be complete / On the sunny side of the street
Physically, I am increasingly limited, but emotionally, I would remain unshackled:
Give me my freedom for as long as I be. / All I ask of living is to have no chains on me.
It’s a hard life to live, but it gives back what you give
Throughout the ALS journey my faith — belief plus trust — in God has steadily grown:
But my hand was made strong / By the hand of the Almighty / We forward in this generation / Triumphantly / Won’t you help to sing / These songs of freedom? / ‘Cause all I ever have / Redemption songs
When I die and they lay me to rest / Gonna go to the place that’s the best / Prepare yourself you know it’s a must / Gotta have a friend in Jesus / So you know that when you die / He’s gonna recommend you / To the spirit in the sky
This ALS ordeal has had a silver lining for me. Love of God and fellow man have finally become my rightful priorities:
Some may come and some may go / We shall surely pass / When the one that left us here / Returns for us at last / We are but a moment’s sunlight / Fading in the grass / Come on people now / Smile on your brother / Everybody get together / Try to love one another / Right now
My mom, whose name was Mary, occasionally comforts me in my dreams — particularly after a bad day with ALS. She offers her brand of wisdom, which always adds up to:
Que será, será / Whatever will be, will be / The future’s not ours to see / Que será, será / What will be, will be
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