Wednesday, June 17, 2009

Learning to laugh

ALS has taught me to laugh. Really laugh...from your belly until you start crying...laugh! And...I'm so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the "I'm so sad I'm sure I can't breathe anymore" moments I still go through almost 4 years later. I have's not what happens, it's how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments....

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you "open" the system - but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE....If you don't keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

Speaking of feeding tubes....There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill's feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse.."Um...Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?" Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

Garage Door Opener
Bill's brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.
As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!

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