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Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
 
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

No Feet

“I cried because I had no shoes until I met the man who had no feet."

My mother loved adages – she thought the whole of life could be summed up in a catchy adage – and the above was one of her favorites. I heard it first when I was six, probably begging for something frivolous, and I never forgot it. She thought it was from the Bible, as do most people, I think, but it actually came, according to one source, from Helen Keller and to another, from “Anonymous.” Whatever. A similar thought goes through my head, and maybe yours, too, when I start despairing about being in this condition, because a proven way to burst the balloon of self-pity is to realize that there are millions in the world, if not your neighborhood, who have disabilities so much more severe and debilitating than yours. They make my own T-10 paralysis seem like a bad cough.

We live in the richest – or maybe second richest – country in the world and in global terms, most people with disabilities here find things pretty good, or at least survivable. There’s an ever-growing comprehensive health system as a first line of defense, plus every medication known to man, disability compensation, however small or inadequate, rehab institutions like the VA, however poorly run and even corrupt, and of course, the ADA. We’ve come a long way, baby, even when it seems like we haven’t.

This inability to appreciate our blessings came to me when my wife handed me a front-page Los Angeles Times article about a man in Syria, a 50-year-old carpenter named Mahmood, who was shot and paralyzed by a terrorist’s bullet while going out to buy some bread. As you’ve probably already guessed, he got poor or no medical help and little social support as well. The one clinic he occasionally goes to for physical therapy doesn’t have a wheelchair ramp. The first doctors he saw wouldn’t operate on him because he was clearly permanently paralyzed, so why bother?

Syria is, of course, a hard case, a country where brutal violence and anarchy rules the day. People on the street there wouldn’t even come to Mahmood’s aid. They threw a rope outside and dragged him to cover. But the war there, according to this reporter, only amplifies the already inhospitable treatment that people with disabilities have always gotten in Syria, and no doubt dozens of other countries.

Become disabled or be born that way, and you are left to fend for yourself, and if you are lucky enough to have a place to stay, you lie on the bed or couch all day. Many of the curbs are a foot high. And if you can’t get up them, go home. Even the “Doctors Without Borders” kind of relief services don’t help the newly disabled. To quote a nurse in a field hospital, “After a while, everyone gets sick of you [person with a disability]. The focus here is on life and death; if he’s alive, leave him.”

Imagine being in Mahmood’s position. He’s a drag on everyone. As his wife says, “His spirits are low and he’s making my spirits low.” Even among those closest to you, a disability is an unexplainable curse and the whole society, doctors, nurses, and spouses included, regards you as useless freight. There are some crude amenities – besides the nearby clinic trying to help him with his atrophying legs, Mahmood’s wife is still there to change his leaky drainage bag and friends will carry him up and down stairs. He has not been abandoned in the streets – yet.

What I like about this profile – if “like” is the right word – is that it doesn’t fit the standard American story line about disability, which is, you suffer, bounce back with a vengeance, find new meaning in life, and triumph. And besides the millions in America who don’t fit this upbeat narrative, enough apparently do to make the news almost every night. With Mahmoon, not only is his care criminally inadequate, his despair and self-loathing is relentless and it won’t easily be fixed by either an anti-depressant, even if one was available, or an inspiring lecture on the power of positive thinking. No support group, no therapist, no “Paralysis Resource Guild,” no Christopher Reeve as a cultural icon, just a life stuck on an old couch in the middle of hell.

Maybe Mahmoon will somehow shake off his suicidal depression and find renewed purpose in life and even help the cause of bringing both respect and care for people disabled by an endless war. We’ll never know unless the same reporter tracks him down in a few years. But, having read this version of his life – go to www.latimes.com to read the whole story – I don’t think he’ll make a heroic, against-all-odds comeback. I think he will live a life of chronic desperation, then die.

I saw the man who had no feet and I cried because nothing would arrive to save him.

© 2014 Allen Rucker | Like Allen on Facebook



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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life

Posted by Community Admin on Jun 23, 2014 4:01 PM US/Eastern