Friday, July 23, 2010

Are We Having Fun Yet?

I wasn’t quite sure what I was going to write about today. Then, a daily challenge of dealing with ALS came through and guided me. One of the facts of life in living with ALS is that at some point, for most people with this disease, your epiglottis begins to weaken, making it difficult to swallow your food without some of it finding its way down your trachea. Along with this, your diaphragm tends to weaken, making independent breathing, and coughing to clear your throat increasingly difficult. For more information about these and other symptoms visit the ALS Association website.

Typically, something will get stuck in my throat during one or two meals every day. Sometimes, it is possible to cough it up in a few minutes. Other times, it can take changes of position, the use of a machine called a “cough assist”, and several hours, before the tiny morsels of food that interfere with my breathing and speaking finally release their grip on the walls of my windpipe. Today was one of those days.

A few tiny pieces of cantaloupe from my morning smoothie refused to give themselves up all the way through my lunch hour. Once the coughing subsided enough for me to be able to eat my lunch, several bits of steamed vegetables decided to join the party. About three hours later, after several prolonged uses of the cough assist, enough of the food particles took their leave for me to be able to carry on a conversation. At this point, I looked up at my afternoon aide, Lloyd, who had been helping me extract the errant remnants of my meals, and said “Are we having fun yet?”.

The harsh reality is that this process is incredibly exhausting and depressing. It is easy to find yourself drifting into thoughts of “enough already”, and to imagine closing your eyes and never opening them again. My best weapon against such thoughts has consistently been my sense of humor. Lines such as “Are we there yet?”, “That was fun!” or “Let’s do that again!”, always shift me, get at least a smile from those around me, and relieve the tension in the room.

Although I believe that I am recovering from ALS, the fact remains that my level of paralysis is characteristic of the advanced stages of this illness. While achieving health gains over the past three years that include skin quality, weight gain, increased energy, and more hand strength, there are still symptoms like a weak epiglottis and diaphragm that test me every day. I believe that recovering from a serious illness or any significant challenge requires healing and/or growth on mental, emotional, physical and spiritual levels. Humor, for me, is one way of addressing both the mental and emotional components of any program for total health. What do you think?

2 comments:

  1. Well, Norman Cousins seemed to think so, and now there's a whole neuroimmunology research center with his name on it in LA.

    But seriously, whether you're dealing with a disease or traffic, humor takes you to a place you'd much rather be.

    (Cantaloupe in your throat? Hilarious!) :)

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  2. In the 14 years since my diagnosis with a rare muscular dystrophy, combined with several unfortunate accidents, I can no longer walk, only one arm works well, swallowing is a problem and my speech is slurred but my sense of humor has survived. My wife and sons are willing participants in the fun which helps a lot. Even my aide plays along.
    I have had many friends with ALS and humor has been a useful tool for many. If you need some bad jokes, let me know- that's the only kind I know. God Bless!

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