Perhaps the most important lesson that living with ALS has taught me about coping with adversity is the power of being present. Over the past few years, as I have refined my ability to do so, there have been countless instances where staying focused in the moment has preserved my energy, my sense of peace, and my sanity. One of my most powerful recollections of success with this process was an episode about 2 years ago while trying to brush my teeth. This is an exercise that requires a good deal of strategic positioning of my hips, torso, elbows, and hands. With my hands overlapped on the edge of the sink and propped up by a folded towel (for additional height and easier sliding along the edge of the vanity), my aide positions the barrel of the brush between my hands, and then places the brush head into my mouth. After removing the breathing apparatus from my face, my aide then carefully observes as I use the limited movement of my head and tongue to manipulate the brush around my teeth. Once positioned, I can typically complete this exercise in a minute or two without stopping.

On that particular day 2 years ago, the difficulty of the task became so intense that I ran out of breath more than once, turning red and then blue in the face, totally exhausted. As I turned over completion of the effort to my health aide, the fears began their war dance on my imagination. It seemed certain that ALS was progressing with its attack on my hands, neck and tongue. I began to panic. My mind raced ahead to pictures of a Joe Wions unable to move at all, completely dependent on others for even the simplest task, and incapable of communicating his needs.

As my heartbeat quickened and my throat tightened, the teaching of one of my then recent alternative health practitioners suddenly crashed into my consciousness. It occurred to me that I was projecting the experience of the moment into an irreversible and horrifying future. With this altered consciousness, I was able to tell myself, “This weakness is only happening now”. Focusing more and more in the moment brought with it a sense of peace and calm. I transformed into an observer rather than a victim of my emotions. As my body relaxed, the tensions melted away, as did, a short while later, the weakness. Two years later, I am still performing the activity with the same level of independence.

Since learning to surrender in my battle with the toothbrush, this technique of staying in the moment, of being present, has helped me over and over again. In the face of many potentially frightening circumstances, it has enabled me to maintain control of my wellbeing, solve problems effectively, and stay on track with my healing process while coping with difficult challenges. It worked when I lost funding for my health aide, and didn’t know where the money would come from to keep paying him. It worked when my wheelchair accessible van broke down, and I didn’t know how I was going to get home. It has even worked when something has gone wrong that took months to resolve.

My most recent example of a long term challenge began in September of last year when a change in my acupuncture protocol backfired, leaving my arms and hands so weak, that I could not operate my power wheelchair or my computer mouse. Again I had to fight off the panic. It took almost 6 months to accomplish the required problem-solving and healing, but today my hand strength has returned to about 90 percent of where it was back in September. Typically this degree of loss for an ALS patient is not recoverable. Through the power of being in the moment and staying focused on my intention to heal, I was able to cope with this difficult challenge and fight my way back.

There is an affirmation that I recite each day as part of my morning ritual. It goes like this, “I believe in living in the moment, total present time, going with the flow, and loving the challenges”. Whenever I find myself feeling threatened by a difficult moment, I recite this affirmation like a mantra. It has a soothing and focusing effect that never fails to restore my balance and power. There have been several instances during the past 6 months that this affirmation has been put through its paces. It has been my stalwart and unfailing ally.

Recently I read an article by historian, Tony Judt, called “Night”. It is one of a series of personal reminiscences that Mr. Judt has been writing for the New York Review of Books. In this particular piece, he describes what it is like trying to survive a typical night for someone who is nearly completely paralyzed. As someone with considerable experience in this endeavor, I can confirm that getting a good night’s sleep is potentially one of the most difficult tasks in dealing with ALS. Mr. Judt has been living with the illness now for about a year and a half. In his article, he describes the intolerability he experiences and the anger he harbors towards this unwanted and overpowering bed partner. He describes the challenge of getting through the night with eloquence and painfully detailed accuracy. You can find the piece at the following link:
Night – The New York Review of Books

As someone living with ALS for nearly a decade, and sharing a level of immobility comparable to Mr. Judt’s, the article stirs in me a great deal of compassion as well as a sense of “close to home”. However, what it brings into sharpest focus for me is the degree to which I have grown to master such circumstances by focusing my mind on thoughts that encourage, gratify and sustain me. After my health aide has completed the process of arranging my body for optimal possible comfort in bed, while lying there in a mummy-like state, I guide my mind away from my physical constraints. Instead, I turn my attention to prayers, visions of being healed, and gratitude for my remaining capabilities and the people in my life who sustain me.

It has taken me several years of dedicated practice to reach this point in dealing with the difficult challenge of sleeping with ALS. And even with years of practice, I cannot profess to have yet achieved a state of complete evolution. The result for most evenings, however, is to doze off within a few minutes of closing my eyes and rarely awakening more than once (usually to empty my bladder into a strategically placed bottle). Occasionally, I will have to disturb my wife’s sleep to handle an intolerable itch or an adjustment to my Bi-PAP. Fortunately, we are both typically able to fall back to sleep quickly and easily. My slumber is often accompanied by pleasant dreams in which I am fully mobile.

As if the battle with ALS was not enough for anyone to deal with, I am also a life-long member of the Tourette’s Syndrome club. The urge to twitch in a precisely particular way can be both mentally excruciating and physically irresistible. Imagine having an overwhelming need to flex a muscle while living in a state of nearly complete paralysis. Had I not learned to control the focus of my mind, I surely would have lost it by now!