Although the experience of not being listened to during my feeding tube surgery was untimely and painful, it is unfortunately also not uncommon. One of the most difficult challenges for me in dealing with ALS is that when your speech becomes significantly slurred and slow, even some of your closest friends and family give up on trying to understand you. Instead, they turn to someone else for interpretation, take their misinterpretation and run with it, or talk or ask about you instead of talking to you. Perhaps worst of all is when they totally ignore you, except for the occasional patronizing remark that addresses you as if you were mentally rather than verbally challenged. If I allow my mind to make this behavior about me, it can feel extremely frustrating, dehumanizing, humiliating, and dismissive. The message you hear is: “You are not important enough for me to make the effort to attune my ear to your impaired speech.”

The truth is that listening to and understanding someone with impaired speech and breathing requires an enormous amount of concentration, patience, and time to get accustomed to the sounds. For more than twenty-five years I was able to earn a living teaching people how to listen, because most are terrible at it. When the speaker’s verbal abilities are impaired, the difficulty of listening increases exponentially. Most people lack the ability and/or willingness to step up to the challenge. When I had clear speech and a strong diaphragm to propel its volume and pace, I could compensate for another’s poor listening skills with my own. Now I have to make other choices.

The first thing I do when I’m not being listened to is remind myself that it is a function of the other person’s limitations, not a comment on my value as a person. To be honest, this effort is sometimes preceded by some anger or frustration, but I always get there, because holding on to negative emotion is unhealthy and stressful. That would work against my plans of recovering from ALS.

Next, I assess how important it is to be heard and understood. If it is important, and I am at my computer, typing the message is an option. If I’m not at the computer and it’s important to be understood, I will ask someone who understands me well to interpret. If it’s not important, I will just let it go. The sad part of this process is that it severely limits my ability to participate in casual conversation and playful banter. I have to choose my moments. Modifying how I participate in conversation is but one of many adjustments that has come with the challenge of living with ALS.

Having people in my life that have the patience and concentration to attune their ears to my speech and pace is critical, especially when I am out and about where it can affect my safety. I am blessed with several family members, good friends, and aides, who take their time to listen and understand. Without them the challenges of communicating verbally would be exponentially greater.

There are some with ALS who have lost their verbal abilities completely, and have to rely on computers or other technology to communicate. These people are heroes to me. As someone who earned his living with his verbal skills, I cannot imagine being completely without them. That is one adjustment I hope to never have to make.

One of my hopes for this blog is to raise awareness among the able bodied of how they can unintentionally dehumanize or degrade people with disabilities, and what can be done to avoid it, and treat the disabled with dignity and respect. It is also my hope that the physically challenged may find insight and strength in dealing with unintended affronts to our dignity. Please share any stories and insights that this posting may have brought up for you. Have you done something well intended that may have offended someone? Have you hurt yourself by holding on to anger or resentment toward someone who wasn’t even aware they offended you? How might we turn those nightmares into miracles?

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?