THE SKINNER'S

THE SKINNER'S

Saturday, March 7, 2009

What is quadriplegia?

So I mentioned that my husband is paralyzed. Let me shed some light on what that means for him. When he broke his neck the nerves were severed at the C5-6 level. This means that he lost all ability to feel and move anything that the nerves below his neck would have been in charge of. So, he can feel and move nothing below his collarbones. He can feel the outside edges of most of his arms. He can raise his arms at his shoulders and he can bend both elbows and his left wrist. Otherwise he has no movement in his arms. So what does this look like in real life? Because I'm an optimist, I'll describe what he CAN do physically first: he can drive a power wheelchair with a joystick, use a computer with voice activated software and use the keyboard with his pinkie, brush his teeth (once he's set up), feed himself (once he's set up), hold our children, and take them on rides with him. So anything else that you do in life he needs some type of physical assistance with. We have a lift that gets him in/out of bed, a craftmatic adjustable bed so that when the head of the bed is elevated he has some control over the movement of his arms, a shower chair on wheels for bathing, and a van with a ramp that has special straps to hook his wheelchair to the floor so that he doesn't move when we're driving. He's had surgeries to change the way his bowels and bladder are managed so that he's more independent with them and needs less help with them during the day. We have nurses who help him get up in the morning (it takes 1 1/2 hours) and I help him get into bed at night (it takes 30-45 minutes). He needs help during the day with any meals and snacks, if we don't have anyone available to come then he has to wait to eat until I get home. He is also unable to cough or blow his nose or vomit on his own because his abdominal muscles are paralyzed. So to do any of these things he needs someone to do the heimlich maneuver every time. I believe that sums up the paralysis part as far as movement is concerned.
Another aspect of quadriplegia is that his body can no longer regulate it's temperature. So he is like a cold blooded animal. When it's cold outside his temperature decreases and when it's hot outside it increases. So most of the year he's cold and is bundled with beanies and hooded sweatshirts as much as possible, and the other months he gets overheated from the sun. However, he absolutely loves the sun and would love to live where it's warm all year round. He has a much easier time cooling off with air-conditioning than he does warming up from the cold.
The other thing that quadriplegia has caused in Chris is physical pain. You'd think that since he can't feel his body he wouldn't have pain. Well some people have that experience. Unfortunately Chris does not. He usually has some level of feeling sharp pins/needles all over his body at all times. When he gets sick this level of pain increases dramatically and he describes a burning pain throughout his body similar to a chemical burn sensation - this pain is in addition to whatever nausea and fever symptoms he normally has as a result of sickness. He is also one of the lucky ones to suffer from recurrent urinary tract infections which cause tremendous pain as well as severe fatigue and dizziness.
So this is his life. This description is not meant to seem dramatic or to invoke sympathy. It is simply stating the reality of the life that he and I face on a daily basis. I know that reading it may cause you to think that he must be depressed all year round and that you wouldn't want to live if you had to live like this. Believe me, Chris doesn't WANT to live like this, BUT this is the life that he faces. A long time ago he he came to a decisive moment where he had to choose to move forward in this life or stay in a depressed, self-pitying state. He chose to accept this life and move forward in the most positive way that he can. He has his days like the rest of us when he wishes life was different, but he doesn't allow himself to get stuck there. He lets it go and somehow moves forward with his perspective. It's true, he's amazing.
So how do I view all of this as his wife? Did I just feel sorry for him and so I decided to marry him? Absolutely not. I fell in love with him DESPITE his paralysis. Is it a hard lifestyle on me? Absolutely. Do I ever feel exhausted? At least a few times/week. Do I ever get stuck in self-pity? Yes. Do I wish he wasn't paralyzed? Of course, but more than that I wish that he wasn't in as much pain. But here's the thing.......to read this description of our lives it sounds pretty bleak. But for any of you that know us personally you know that our lives are anything BUT bleak. Chris radiates life, energy, and passion, not to mention he has the best sense of humor of anyone I've met. His spirit is NOT paralyzed even though his body is. And it's that spirit within him that drew me in to fall in love and continues to draw me in to stay in love. He has brought more LIFE to my life than anyone I've ever met. And so I move forward. I put one foot in front of the other and I embrace this life that God has given me. This is the only life that I have and I intend on squeezing ever drop of joy out of it that I am able to. So, I consider it Pure Joy......

2 comments:

  1. You both are amazing people! I'm so proud to know both of you and continue to pray for your daily joy! Love you!

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  2. A beautiful story of two beautiful people! Thanks for sharing:)

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