One Father's Extraordinary Journal of Living Longer with ALS
Wake Up Call

Having my swallowing deteriorate to the point of needing a feeding tube has caused me a great deal of reflection and contemplation. Given my intention for fully recovering from ALS, having to get a feeding tube was a huge disappointment. Thinking about changes in my behavior over the past year or so, I realized that I have stopped doing breathing exercises, meditation, taking mental trips to the gym, and visualizing myself in a fully healthy and mobile state. I have gotten complacent. As a result, my breathing has declined to its lowest level ever, my voice clarity and volume are so poor that most people can’t understand me, I have lost significant weight, navigating my wheelchair has become more difficult, and swallowing has eroded to the point of requiring a feeding tube. The tube, for me, has been a startling wake up call.

Perhaps not so coincidentally, two other events have dovetailed with my reawakening. One was the reading of my friend, Howard Guttman’s, latest book, ”Coach Yourself to Win” In it, Howard quotes from my manuscript words that serve as a powerful reminder of where I have strayed from:

“…it takes a while to get past the surrealism, to really get it that your time may be limited, and how you are spending your time right now is how you are choosing to spend what is left of your life…. It finally hit me that holding on to my typical patterns wasn’t going to do anything but burn me out and cause me to fade away with no additional contribution to myself or anyone else…. Once I got it that things had to change, I started to shift my priorities. My work was no longer as a management consultant. My work was now to demonstrate how to take responsibility for my own survival and live with intention to find a way to beat an unbeatable disease.”

While my consulting days ended years ago, reading my own words in Howard’s book made me realize that I have let too many other activities interfere with living out my intention. It made me realize that it is time to refocus my priorities. A second quote from my manuscript reminded me dramatically of what was at stake:

” I have pretty consistently held to the notion throughout this ordeal that recovery (at some level) is a possibility. The flaw in this way of thinking is that, if reversing this disease is a “possibility”, then the opposite is also a “possibility”. ALS is a neurological disorder, and the brain is the center of the nervous system. If my brain is sending out messages to the rest of the system that recovery is only an “option”, then my potential for recovery has been compromised. So my strategy going forward is to convince myself that recovery is a certainty, and that it has already begun.”

Such convincing requires a great deal of meditation and visualization. Giving up such activities results in too many unwanted possibilities. The stakes with ALS are simply too high to risk with unintentional behavior.

The other event that coincided with my reawakening was joining Dr Craig Oester’s Healers of ALS (HALS) group Over the past several months Dr. Craig has become one of my heroes. He has been living with ALS for seventeen years. After approaching death as a hospice patient, he finally began to turn his health around, improving enough to get thrown out of hospice. Craig and I share the belief that the key to healing from ALS lies in managing one’s thoughts and beliefs. As a psychologist, who has successfully used this basic premise to reverse his own symptoms, he is now inviting other PALS (people with ALS) to join him in an effort to see if his results in recovering from ALS are reproducible. His determination and strength of focus have inspired me and redirected my attention to behave in alignment with my intention with greater fervor.

What experiences have you had with getting off track from an intention and recovering your focus? What helped you to get back on track?

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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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