Mature Life Features

Cecil Scaglione, Editor

The ALS Journey

with 2 comments

Imagine a slope.

You’re standing on it. But something’s wrong.

You’re sliding. You try to dig in your toes and your heels. You try to walk backwards or to turn around and get back up. But you keep sliding.

You don’t feel any texture, you just keep sliding. You’re in total blackness. There is no light. There is no breeze or draft or odor. You’ve never been here before.

You can’t see where the slide bottoms out. You can’t see if it levels off. Or if it undulates up and down.

And you keep sliding.

You realize there’s someone beside you. “Are you OK,” you ask.

The response is quite close. It’s a bit slurred. Like a person who just tumbled out of bed. Or has had a bit too much to drink.

You touch an arm and follow it down to the wrist and hand. The hand accepts yours. It feels cool and smooth — a bit like metal — but it’s soft and flaccid. Instead of gripping your clasp, it sort of shakes it to let you know it’s there.

You’re still sliding. Both of you. You don’t know how fast. You start wondering if you’re going to bump into or trip over anything.

There’s a sound you don’t recognize. Their hand slips out of yours.

“Are you OK,” you ask. “Yesshh,” you hear. It’s still close but the source seems somewhere.

You reach out and around and touch an arm. You try to help them stand up but there’s no cooperating strength or self-help.

“Can you stand up,” you ask. You’re told they can’t feel their feet and their legs won’t move.

You keep on sliding.

Then you hear coughcoughcoughcoughcough khaaaccccch coughcoughcoughcough. You reach out to help but you can’t reach them. You didn’t realize it but they’ve slid somewhere out of reach. There’s nothing you can do.

You both just keep on sliding. The coughing is sliding with you.

Then you hear a different sound – short gasps. “Ican’tbreatheIcan’tbreathe” they’re trying to shout but they start to choke. It sounds like they have a plastic bag tied over their head.

Your foot hits something so you reach down to pick it up. It’s feels like a sandwich. Food. It smells like ham and cheese.

Then there’s a new sound. “I…can’t…swa…llow.” You feel guilty but you have to eat. It’s difficult to push it through that knot in your stomach. You have to stay strong to try to help them.

And you keep on sliding and sliding and slid…

 

 

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Written by Cecil Scaglione

June 17, 2018 at 8:56 am

2 Responses

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  1. Incredible insight and writing. Stay strong. Prayers Maureen

    >

    Maureen Murphy

    June 17, 2018 at 9:13 am

    • Thank you for your prayers, thoughts and support …

      Cecil Scaglione

      June 18, 2018 at 6:48 am


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