CHARLOTTE, NC: I’m not sure if this happens to other ALS patients but one thing I have noticed since this adventure began is that my mind is frequently filled with random thoughts. Not all of which make sense. The will sometimes wander over to the many unseen and harmful hurts of ALS. It is more than losing my body, its the quality of life cost of that loss.
For example, I now realize that for me at least, the best part of the day is getting out of bed and putting on fresh clean clothes. I am never quite sure how long they will stay stain free, but that first burst of unsoiled clothing is most refreshing.
Sometimes I barely get through breakfast. Other times, if I’m lucky, I might make it to lunch, but more often than not, by the time I am ready for bed, I look down and discover remnants from everything I have eaten, or attempted to eat, throughout the day.
Could it be I was once the model for “Pigpen” in the Peanuts comic strip? Or is it just another of the harmful hurts of ALS?
Read More of Living With Amyotrophic Lateral Sclerosis
One morning while sliding out of bed, the thought occurred to me that back in 1953, the doctors who told Stephen Hawking he only had two years to live, probably died before Hawking did.
That’s the sort of stuff I think about these days.
Recently, a life-long friend sent me a column from the New York Times about a series the paper began in August 2016 about dealing with disabilities. Not long after the series began, a poet, Jennifer Bartlett, noticed that a significant number of the poems written by people with disabilities.
Those poems often gave words to the harmful hurts of ALS and other disabilities.
As Ms. Bartlett put it,
“Poetry is the most organic art form; it does not require money or physical labor. A poem doesn’t need to follow any particular grammar rules; it is the record of one’s own experience of the singular mind and/or body, a singular voice. For many of us, it is also a way of ‘being in the world,’ a world that in many ways was not made for us and actively resists our participation. Through poetry, we are able to remake and reinvent that world.”
For the most part I agree with Bartlett’s assessment, however, I do not go along with the idea that poetry, or writing in any form, requires no “physical labor.” Depending on the ailment, putting words on a page and the thought processes necessary to do so can be both physical and mental in nature.
Reviewing the poems, Bartlett compiled many of the poems and, admittedly I am not smart enough to grasp the meaning of many of them.
There was one in particular, however, that hit home directly.
Expressing the harmful hurts of ALS and other disabilities, of the shunning by a society who treasures physical appearance Lateef McLeod writes:
I AM TOO PRETTY FOR SOME ‘UGLY LAWS’
I am not supposed to be here
in this body,
speaking to you.
My mere presence
of erratic moving limbs
and drooling smile
used to be scrubbed
off the public pavement.
Ugly laws used to be
on many U.S. cities’ law books,
beginning in Chicago in 1867,
stating that “any person who is
diseased, maimed, mutilated,
or in any way deformed
so as to be an unsightly or disgusting object,
or an improper person to be allowed
in or on the streets, highways, thoroughfares,
or public places in this city,
shall not therein or thereon
expose himself to public view,
under the penalty of $1 for each offense.”
Any person who looked like me
was deemed disgusting
and was locked away
from the eyes of the upstanding citizens.
I am too pretty for some Ugly Laws,
Too smooth to be shut in.
Too smart and eclectic
for any box you put me in.
My swagger is too bold
to be swept up in these public streets.
You can stare at me all you want.
No cop will buss in my head
and carry me away to an institution.
No doctor will diagnose me
a helpless invalid with an incurable disease.
No angry mob with clubs and torches
will try to run me out of town.
Whatever you do,
my roots are rigid
like a hundred-year-old tree.
I will stay right here
to glare at your ugly face too.
I understand that I am too pretty for some Ugly Laws
While I “get” what Lateef McLeod is saying, I must say that in my personal experience I have never noticed anything but compassion on the part of others when dealing with my own disability. Still, the gist of what she says does hit a sore spot.
For example, recently several fast food chains announced that they are doing away with straws with drinks. Supposedly it’s an environmental issue, but, then again, did they ever consider there are thousands, maybe even millions, me among them, that cannot drink a liquid without using a straw?
Let’s face it, I have already come to realize how silly I look when I order a glass of wine and touch my nose to the end so I can sniff the aroma of the grapes.
Each of us has, at one time or another, had one of those “uh-oh moments” where the very second we close the car door we realize the keys are still inside.
The Hall of Frames
My most recent experience with that phenomena came during one of my nocturnal visits to the bathroom. Now that the renovations to the house are done, my wife has created a family photo gallery which I call the “Hall of Frames.”
One night, I stumbled past the pictures (I no longer walk, I plod), took care of business and returned to bed. In the dark, I fell forward, thankfully landing in a soft spot, but also putting a small gash in the bridge of my nose.
For the next several nights I was sleeping with a “Doc McStuffins” band-aid on my face.
About two nights later, while returning to bed, I started to pull the sheet over me in an effort to stay warm. As metabolism slows during the night, the room becomes cooler and a sheet is a great source of comfort and warmth.
Unfortunately, when you have no use of your arms, pulling the sheet over your body to provide coverage can be an ordeal, and that’s when the “uh-oh moment” took place.
In one last burst of energy, I pulled the sheet up over my head in the process. In a split second, I realized that when my wife came into the room the next morning and discovered me totally covered with a sheet, it would not play well.
Thus, I quickly removed the offending covers and returned to the land of nod. Dreaming of the day people see beyond ALS and see the person in the wheelchair. The day the small harmful hurts of ALS, from food spattered clothing to averted eyes, are a thing of the best.
All of which only proved to me that getting up with no use of your arms is most assuredly a “feat.”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up
Lead Image: Brilliant theoretical physicist Stephen Hawking who died at age 76. (Photo: NASA/Paul Alers [Public domain], via Wikimedia Commons)