Celebrating Five Years with ALS

Today, July 3, 2017, marks my fifth anniversary of being diagnosed with ALS. There were a few times when I didn’t think we would make it to this point, but God’s amazing grace and everlasting love saw us through.

To celebrate,  I find it appropriate to share some excerpts from my upcoming essay entitled “ALS: A Respiratory Perspective.” This essay will share my own interpretations and opinions about my diagnosis, the events leading up to my tracheostomy, and my life with the trach. Hopefully, it will be available as an ebook and a paperback by the end of August.

These passages are unedited; I apologize in advance for any grammatical errors or discrepancies in style.

My diagnosis:

“The neurologist came into the room and said, “Mr. Jackson, there is a strong possibility it is ALS. There is no cure.” Silence. I searched the good doctor’s face for any sign of compassion. Nothing. “Life expectancy with your disease is three to five years.” Now, would I get some empathy? The neurologist’s expression does not give: it is as cold as the grave I’ll be buried in.

I thought, Seriously, is that it? You have nothing more to say?

The doc could have at least offered me a stick of Juicy Fruit or even a breath mint – a Tic- Tac, perhaps? Alas, it was not to be. Instead, I got stuck with a bunch of pamphlets about ALS – stuff I knew by heart from my extensive internet research.

Oh, for me. A bunch of useless pamphlets. You shouldn’t have. Uh – thanks anyway.

Look, doc, shake my hand, look me in the eye and tell me, “Good luck with that, Mr. Jackson,” rather than wasting all your money on these dreadful handouts. Save a tree or two, it will have more of a positive impact on humankind than how you just treated me.

We must bridge this gap of bad doctor-patient relationships. I think that doctors need to start offering the patient a voucher for one free chocolate pudding from the hospital cafeteria upon receiving a diagnosis of a terminal disease. Whipped cream will cost you extra, though.

On self-doubt:

“Extending my life with a tracheostomy didn’t present much of a dilemma for me. From day one I wanted to fight this disease with everything within me I could muster, but I still have my share of doubts. To be honest, I’m still apprehensive after one of my acquaintances dies from this disease. I begin to question myself, do these people know something I don’t? Am I an idiot for choosing to live in a broken body? Am I a selfish ass for burdening my family with the stresses of ALS?”

Living with ALS:

“People assume that just because you’re in a wheelchair you are deaf, dumb, and blind. These are the same persons who bend over until their face is in front of yours, then they proceed to yell out every word slowly while they over annunciate every syllable as they shower you with spit after every consonant is pronounced. Oh, my, God! Will someone get this moron out of my face? I can hear perfectly, and if anybody is the idiot in this, believe me it’s this igmo in front of me trying desperately to hold a conversation. No, I’m not paying attention to you, I’m thinking of exciting ways to run you over in my wheelchair.”

Please be patient because the writing process takes a long time for me. Unlike my first fiction debacle, this essay will be published.

Copyright © 2017 Kipling A. Jackson











2 Replies to “Celebrating Five Years with ALS”

  1. Hi Kip
    Can’t wait to read your essay. You are one of the most interesting persons that I have met. You challenge and teach me every time I read your writings or see your emails of conversations. I admire and respect you for all you have endured and accomplished thru your diagnosis.
    With Much love prayers and Respect
    Your Friend
    Linda Powers


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