“_* _ _ _ _ _ _ _ _ ** _* _ _ * * ***_ * *_*
_*_* _ _ _ _ *_ _* _ _* * ***.”
“Nothing ever changes.”
“Twelve years is too long. I’m tired of nurses. I’m tired of my family. I’m tired of wishing I were dead.”
I couldn’t escape Michael’s words, or the image of him lying in bed using Morse Code to tap out his emotions. What could I say? How could I respond? Empathy: Webster says “this is the ability to share in another’s emotions, thoughts; or feelings”. I don’t believe that ability exists when it comes to a quadriplegic or any immobilized person.
How can anyone who can move, talk and do what they want without assistance, empathize with someone immobilized? It doesn’t matter how good a doctor you are, how long you’ve been a nurse, how much you love this family member. You can’t put yourself in the place of a quadriplegic and say you understand how he feels.
This article will examine some real issues that separate the non-ambulatory person from the mobile one. I will demonstrate how this goes beyond the physical limitations, but touches on the mental challenges as well. Any competent adult has the ability to set their own limits. Why change the rules if someone becomes a quadriplegic? Now let me show you, not how to put yourself in a quadriplegic’s shoes, but to understand why you can’t.
This article was inspired by one very special friend, but I dedicate these arguments to all who have faced, or will face, the issues presented here.
I’ve been a nurse for over fourteen years. I worked two years in a hospital before going into private duty. Having worked with several quadriplegic adults and other non-ambulatory patients, I’ve known of their mental anguish and their dreams and aspirations. I’ve been with my current patient Michael, for over twelve years, and for more than ten of those years I’ve been his sounding board.
Michael’s paralysis from the shoulders down is the result of a diving accident 16 years ago. Further complications and encephalitis destroyed his ability to speak. Michael uses a computer and Morse Code to communicate. He types everything with his chin.
” ** *_ _ *_ _* _ _ _ _ _ *_ _ *_ _ * . ”
“I want to date.”
I am his voice. He conveys his needs to me and with his permission I present these needs to the family member of his choice. Today the message is presented to one of his brothers. My client waits upstairs in his bedroom.
“That’s the saddest thing I’ve ever heard,” is the brother’s response.
This is not the comment I want to take back to Michael. I want to say: “Is this it? Is this all you have to offer?”
What should his brother say? What can any of us say to him? Michael would have to have a nurse with him on a date. Depend on someone to drive him around like a chaperoned child.
Another day. He taps. The dots and dashes become words.
“I need my own place.”
He does. He’s in his thirties. At twenty-two he’d mapped out the rest of his life. Photography in New York City was his major goal. He was on his way to independence.
“** *_ _ _ _ _ ***_ * ** _* _ _ _ _ _ **** * _ _* *_ _ * *_* .”
“I dove into the water.”
“I was fully clothed. I hit my head and saw a flash of light. I knew it was the end of my privacy forever.”
It was two days after his 22nd. birthday. He was horsing around. No alcohol. No drugs. He was having fun. He dove off a pier into shallow water.
This wasn’t just a loss of privacy, it was the loss of his independence and the spirit of his youth. His life lay at the bottom of a river.
He taps. There’s resentment in the message.
“Who’s my babysitter tonight?”
I know what this means. He’s asking which of his siblings will be there to assist the nurse putting him to bed.
He taps again.
“No more going to bed early because my babysitter’s tired.”
It sounds like a statement from a defiant child. The problem is this: there’s a remote controlled lift and the nurse has to learn to operate it. This transfers a person from wheelchair to bed. In Michael’s case, a sibling is there with each new nurse the first few nights, until the nurse masters the technique. The siblings have jobs. They need their sleep.
Once a new nurse learns to put him to bed alone, Michael can stay up as late as he wants. This is a small consolation for someone who gets up most days at someone else’s convenience.
“**_ * _ _ _ _ **_ _!”
Michael wants to kick everyone out of his bedroom. Out of the living room. Out of his life.
Michael’s requests and demands are in Morse Code, tapped out on a computer because he cannot speak. But just because he has no voice shouldn’t mean his words should fall on deaf ears. Let him know you’re listening. Get out of his room. He knows he can’t keep you out. He understands he has to be cared for, but give him some time to be completely alone. Give him at least that much independence.
More taps. He wants you to hold the Insulin. Hold his liquid supplement. In Michael’s case, he’s a diabetic. He wants you to feel his demands, even if some of them can’t be met.
He tells you he had a nightmare. You ask what it was about.
“I dreamed that I was walking…swimming…running.”
You didn’t expect this answer. Your idea of a nightmare has a different concept. This is a reality check. Listen to it. It demonstrates the reality of an immobile person.
“The water was my best friend…then it betrayed me.”
The betrayals continue. Michael wants a week away from his family. He’d prefer more time…it doesn’t matter. He doesn’t even get the week.
Compromises are offered. Stay home, but in a different part of the house. Family would wait for invitations to visit. There isn’t enough distance. They continue to “barge in” (Michael’s word) on his illusive freedom.
Photography; movies. To some it may sound like entertainment. To this disabled adult it’s an exercise in control. What movies to see; the control of directing photo shoots. Some other adult tells you you’ll see their movie tonight. Someone else tells you a different night is a better night for a photo shoot because certain programs come on TV that you’d rather not see anyway. If you’re mobile you can walk away. Go to the movies alone. An adult quadriplegic should be allowed to do what he feels like doing…not what others say he should feel like doing.
If we’re tired and have a day off, we may decide to stay in bed all day and read, watch TV, listen to music. What the hell…we’re in control. What would you do if those choices were taken away from you? Wouldn’t you be angry? Indignant? There are always good intentions. Someone says it’s not good for your lungs. You think…one day. Can’t I stay in bed one day? Now imagine someone getting you out of bed against your will. You’d fight it right? If you could move.
If a quadriplegic uses a computer to manipulate his environment then all he needs is help with his switch. You take away his switch; you take away his control. A family member would probably never do this to him: but many don’t realize that taking away choices is equivalent to taking away a switch that enables one to maintain some measure of control.
Now let’s try to take a little walk in those shoes in a very familiar way. You have a very private itch during a very important meeting. You can’t leave. You can’t scratch. Concentrate on that itch. Feel it intensify. Feel it spread to other areas. Feel the need to scratch become the strongest need in your life. Now imagine if you couldn’t scratch it. Someone else has to scratch it for you. Now imagine they won’t.
Seeing the big picture is what a lot of us fail to do when looking at a disabled family member, friend, client. Some of us think it could have been worse. He’s lucky to be alive. Lucky to have all his wits about him. Does he feel lucky? Is ‘lucky quadriplegic’ an oxymoron?
We should never say to a quadriplegic; what’s done is done; deal with it; get used to it. How can any adult get used to their life being in the hands of someone else? Why should any adult with a competent mind have to get used to it? We see the life of a quadriplegic in frames of taking care of him. He’s an adult, and he sees his life in terms of the amount of control that he’s given.
What family members and care givers must realize is that one of the things a mentally sound adult quadriplegic can’t do, is walk. He can, and should be involved in all decisions concerning his care. His social life and extracurricular activities should be his choice. No one should ever tell him what to think, feel, watch or listen to. He cannot walk away from decisions we make for him, so let him make those decisions himself. How many of us have faced off with someone who says they’re doing something in our best interest? If we don’t agree: we challenge it. We know better than anyone what we feel is best for us. Right or wrong, it’s what we feel.
We cannot put ourselves in the shoes of a quadriplegic. That’s the big picture. The best we can do is step back, open our eyes wide; and take a closer look.
Author’s Note: This article has been modified from it’s original form by myself, the registered owner, for this blog.
“For Michael” is registered with FanStory.com
Registered by Kathleen Jackson on Jan 28 2014 04:35 PM EST
Registration ID: 345768