A response to a friend's less than well thought out atempt at humor and being disabled. 

J.W.

23 February 2014

Sunday 5:00 AM

There is a wrinkle that remains folded over, a ruck that bothers like a stone in one's shoe. The disturbance keeps demanding attention, the intensity mounts. On one hand I want to overlook it, chalk it up to good natured ribbing. But the pain continues, bringing me back to the anguish of a wound not expected.

I realize that humor is a form of tension release, the building of energy that may be counter to prevailing expectations as a punch line is explicated stands our following the development of a joke on its ear. Laughter ensues as we reconcile the two endings, the punch line and the internal understanding as we anticipated the unfolding story. Many people laugh for similar reasons but the story is not some hypothetical, third party story, it is the uncomfortableness felt as someone is set apart from the group and publicly pilloried. The stage act of Don Rickles or a person being roasted at a dinner act as examples here. These examples may be tension inducing and the release needs to be effected, but they are more like watching a bully asail a victim than something humorous.

Yes I realize that some people have no compunction about bullying tactics, perhaps they weren't raised with sufficient input from patient and loving adults. Or maybe they momentarily lapsed their own ability to understand the impact their behaviors could have on others. Either way the recipient of such unfortunate attention may wish the humor impaired perpetrator Godspeed in a swift release of their own internal tension. And since one of the best relievers of tension the body knows is to experience sexual release, the familiar epitaph to go fornicate with one's self quickly rises to the occasion. There are more succinct and rude ways to state this helpful bit of information, many of which are well know to the public. No need to repeat them here.

There are many related and yet not easy aspects to this disease that many people fail to consider. From the CENA helping with my two (count 'em only two) showers a week who after putting my socks on my feet, she lets go of the foot when she has finished to let it drop to the floor – that hurts! To the CENA changing my urine soaked sheets of my bed while I am still in it (a standard hospital technique) who asks me to lift my leg to help her out.

People fail to understand or realize that this disease has progressed to the point where from my sternum down to my toes I have no voluntary control of my muscles. I have reflex responses, but there is no control to those. I cannot stand or walk, I can't roll my ankles in bed, lift my leg or bend my knee. In addition the sphincter muscles (which at rest tighten and close – much like any perching bird or an owl's feet), I cannot control to open and void my bladder or bowel. For over a year now I have had to wear what is basically an adult diaper to catch my bodily effluents. This runs exactly counter to our earliest successes, the graduation from diapers to pull up underwear. The effect runs deep.

There are so many little losses of physical abilities which I had grown up wielding without a second thought, now they are gone, sometimes overnight. Its frightening, how soon will I become entirely dependent on others for everything? I feel partially locked into a noncompliant body now, how long before I cannot speak, put on my iPod headphones, work my computer? I see it in this facility all the time, residents who are washed in bed then put in front of a television for entertainment all day. How long before I join their ranks? I am still getting used to having my briefs (diapers) changed five or six times a day, many of these have gone too long and the sheets are soiled and have to be changed as well. The CENA staff tell me not to worry, but it still feels like a failure on my part, I'm at the same level as a toddler. I used to do better than this. There is no easy way to ease into this.

If I make some self-deprecating double entendre that is my choice. When someone else refers to my loss of bodily function directly trying to make humor - that is crossing the line. Like when a waitress in a restaurant asked me what my blind friend wanted to order (assuming she couldn't order for herself), fire works ensued. Or the coarse ruffians entertaining themselves pickpocketing the carry bag one of my quadriplegic classmates had slung over his wheelchair. Its easy to take advantage of the disabled, nearly anyone can do it, many do, even if the attempt is a feeble play for humor. There are just some things that shouldn't be attempted. One would hope that we as a culture had progressed further than that. Perhaps someday. With any luck this progression might occur at the same time as I become totally dependent on others. One can hope ...