“_* _ _ _ _ _ _ _ _ ** _* _ _ * * ***_ * *_*
_*_* _ _ _ _ *_ _* _ _* * ***.”
“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 there using Morse Code to tap out his emotions. What could I say? How could I respond?
Webster’s definition of empathy: “the feeling that you understand and share another person’s experiences and emotions: the ability to share someone else’s 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 or any immobile person, and say you understand how he, or she, 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, and 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 ourselves in the shoes of a quadriplegic, but to understand why we 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 have been a nurse for over fourteen years. I had 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 Michael for over twelve years and for more than ten of those years, I have 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. He uses a computer and Morse Code to communicate. Michael 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,” says the brother.
This is not the comment I want to take back to my client. I want to say: “Is this it? Is this all you have to offer?”
What should he say? What can any of us say to Michael? He’d have to have a nurse with him on a date, and then depend on someone to drive him around like a chaperoned child.
There comes another day, another message. Michael 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 the loss of Michael’s privacy, it was the loss of his independence and the spirit of his youth. His life lay at the bottom of a river.
Michael 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: Michael has a remote controlled lift and the nurse has to learn to operate it. This gets Michael 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 Michael to bed alone, he 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.
His requests or demands are in Morse Code, tapped out on a computer because Michael cannot speak. But just because he has no voice, it shouldn’t mean his words have to fall on deaf ears. Let Michael 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 dreamt 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 what an immobile person has to deal with.
“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 can’t even have 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” as Michael puts it, on his illusive freedom.
Taking pictures and watching movies. To some it may sound like entertainment. To Michael 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, programs that Michael tells me he’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, or listen to music. What the hell…we’re in control. What would you do if that choice were taken away from you? Wouldn’t you be angry? Wouldn’t you feel 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 the quadriplegic to maintain some measure of control.
Now let’s try to take a little walk in the shoes of a quadriplegic, 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 as it becomes 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, or patient. Some of us think it could have been worse. They’re lucky to be alive. They’re lucky to have all their wits about them. Does that person feel lucky? Is ‘lucky quadriplegic’ some type of 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? How can we expect they’d get used to it? We see the life of a quadriplegic in frames of taking care of him. If they’re adults, the quadriplegic, see their life in terms of the amount of control that they’re given.
What family members and care givers must realize is that the only thing a mentally sound adult quadriplegic can’t do is walk. They can and should be involved in all decisions concerning their care. Their social life and extracurricular activities should be completely their choice whenever possible. No one should ever tell them what to think, feel, watch or listen to. They cannot walk away from decisions we make for them, so let them make those decisions themselves. 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.
Authors Note: Sadly, Michael passed away on November 11th. 2004