It is a delight to be the spouse of a hard working, joy-filled, dedicated man.

Tuesday, November 25, 2008


I am most amazed and impressed not by people who make a ton of money in their chosen career, or singers, actors and models who become famous and are worth over a half a billion (yes, with a b) dollars, nor by ordinary people like you and I, who slog through ordinary things, but by people who are afflicted with a disease so severe that they spend their entire life contorted whether in body or in mind.

Our bodies, yours and mine, are meant to function in a certain way, we were built to walk a certain way, pick things up and hold them a certain way, gaze at things a certain way, and no matter what our native tongue we were meant to communicate in a certain way.

When I do something harmful to my body or my body picks up a temporary disease that causes me to hold myself in an inordinate way, I get a glimmer into the lives of those that are twisted, encumbered or lacking, in the ability to move, think or speak in the easy ways I take for granted. To know how much it hurts and fatigues me to compensate in my gait for a sprained ankle, that by the end of the day I want to weep because of the stress it puts on the rest of my body not to mention the pain of the injury itself, I wonder about others who have never experienced the freedom from the pain of a body that doesn't move the way the human body was designed to move.

When I look back on occasions I am deep in thought about something else or for what ever silly reason my brain misfires and I incorrectly communicate what I meant, I wonder about and deeply admire people that go through every single day not being able to easily say to people what they need to say, let alone want to say. To be constantly misunderstood and have to spend time on what just spills out of our normal palates and off our normal tongues, I cannot imagine the patience that it takes to get through a life encumbered with never ending difficulties.

At certain places in my life I have had the pleasure of being with and hopefully helping people who were dealt a deal quite raw compared to our lives. In college my brother worked at a group home for older kids with Downs Syndrome, Cerebral Palsy, and other less well known but not less debilitating diseases. I visited him and hung out at the group home on a few of my breaks at the college I attended. It was here that I came to understand not only the chronic, unrelievable pain of moving about with a body that did not develop as our Maker designed the human body, but the chronic, unrelievable pain of daily communicating from inside those broken bodies and minds.

Jane, a sweet and very intelligent girl, with Cerebral Palsy, was so patient with my inability to understand her. The workers at the home had become used to her needs and her manner of communicating much like a mom of a toddler knows what they are saying when everyone else in the room is stumped. But knowing, that unless Jane was with someone who had come to know her well, she was faced with either not bothering to communicate or spending time and frustration on the attempt to be understood, I was overcome with sadness at her difficulty yet joy at the opportunity to get to know her and share in the delight of her sense of humor, quick wit and excellent checker playing ability.

I sometimes get very frustrated with my occasional inability to communicate with my fellow citizens. Often it seems that no matter how carefully I choose my words, they are misunderstood and visa-versa, maybe not often often but often enough to get me into hot water or cause a temporary break in relationship not to mention just the mild irritations. Knowing that, I cannot imagine having to deal with miscommunication on a large scale, day in day out, for my entire life.

Jane's body was so contorted from the disease that she was confined to a wheelchair and even from there I often wondered how much pain she endured. Her chair was well padded at all the pressure points and the workers would massage as best they could the stressed areas of her body. To not move freely, to run and jump and play like normal is one thing but when your every chosen movement and resting positions go against normal body mechanics, the pain endured is beyond my imagination and comprehension.

Yes, I get that the Jane's in this world smile and take the hand they are dealt, that they are diligent to find the joys in life amid the pain, to the seeming exclusion of the pure discomfort. But that is what I find so admirable. That faced with the constant physical pain of a contorted, distorted body along with the emotional pain of difficult or impossible communication, they smile. They smile and laugh with those of us who will never really know the extent of the burden they bear, they choose to brighten our day of relative ease.


KathyB. said...

Wow, great and thought provoking post Lanny ! I too have on occasion of sickness and pain thought about others who endure it for a lifetime. Then my pain is relieved, and I get well and I forget.
Thank-you !

Daisy said...

It is amazing to me too, Lanny, how people who must endure so much are still able to find joy. I guess it is true that you find what you are looking for. Attitude towards life is what really makes the difference, I think. Excellent and thoughtful post. :)