One Father's Extraordinary Journal of Living Longer with ALS
They Don’t Talk to Me Anymore

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?

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This past Wednesday I left the house at 7:30 am along with my entourage of my wife Diane, my son Dan, my health aide Jimmy, and my friend Gil. We arrived at UMDNJ in Newark about an hour later. The surgery was scheduled for noon, but the hospital staff managed to fill up most of the three and a half hours with paperwork, x-rays and EKGs. I also had brief opportunities to speak with the doctor, anesthesiologists and nutritionist. By the time the whole thing was over, we finally arrived at home at 7:30 in the evening. It was a very long day.

All of the hospital staff was very nice and attempted to answer all of our questions. Unfortunately, they all shared one very sad characteristic – the inability and/or impatience to listen to someone with impaired speech. Prior to and after the surgery, my entourage made sure that I was understood and that my needs were met. During the surgery, however, none of them were allowed in the room, and the lack of hospital staff listening skill proved to be a disaster. I was supposed to be anesthetized to a “twilight” state, but I was fairly alert through the whole process. When I called out in pain as loudly as I could, I was completely ignored. In addition, the doctor kept leaning on the intravenous needle in my left hand, and ignored my frequent requests to stop. In short, the experience of the surgery was a nightmare. Fortunately, the end result was successful.

It is now two days after the surgery. While I have some discomfort, there has been relatively little pain. The experience of watching food enter your body through a tube is very strange, but it is not as disturbing as I had, at times, anticipated. The accumulated phlegm from previously inhaled food is gradually leaving my respiratory system, and I am already spending far less time on the cough assist machine. We are also learning how to maintain my raw fruit and vegetable diet using the tube. So the plan is working. About another week of healing, and life should return to something close to normal.

I want to thank all of the well wishers and supporters who called and e-mailed before and after the surgery. Your efforts have meant a great deal to me, and have helped to smooth this latest path of my journey in living with ALS.

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