One Father's Extraordinary Journal of Living Longer with ALS
Thank God for Spring! A Blessing when Living with ALS.

You don’t have to be fighting a life threatening illness to be celebrating the end of a season that packed way too much wind, water, snow and cold. As someone who has lost a significant amount of his normal body weight, however, I find it particularly sweet. Even though I have regained close to half of what I had lost since the onset of ALS, inactivity from paralysis keeps me extremely vulnerable to the cold. My body doesn’t start to feel warm until the thermometer reaches at least 75 degrees. Venturing outdoors during the colder weather requires so much warm clothing that I can barely exercise what little physical mobility I have. The combination of the exposure and reduced independence can put quite a damper on my incentive to leave the house.

Gazing through my bedroom window in recent mornings, while basking in the warmth of the sun’s rays and studying the greening of the grass and the formation of the trees’ new buds, the rebirth that is spring surges inside of me. I look forward with the anticipation and excitement of a circus bound child to strolls around the block with my wife, visits with friends and neighbors, shopping excursions, dining out, trips to parks, and other outings. I especially look forward to testing the extent of the regained strength in my right hand for driving my wheelchair. During a recent walk with my aide, on one of the first days to break into the mid-sixties, my hand lasted far longer than I expected before experiencing fatigue. This leaves me very excited about the prospects for my increased level of activity this spring and summer.

Among the things that make living with ALS difficult is the constant bombardment by external reminders of the limitations it can impose. The bone-chilling feel of temperatures that used to seem mild reminds me of the frailty of my body. Inabilities to scratch an itch or grasp a pencil are among the constant reminders of the mobility ALS has stolen. Perhaps worst of all, is the loss of dignity and disrespect that can be suffered at the hands of well-meaning strangers who assume how badly you feel and behave out of pity based on the projection of their own fears of what it would be like to be in your place.

What facing such situations has taught me, as did the challenges of sleeping with ALS, is the importance of choosing how to focus my attention. Making conscious choices about how to view my circumstances has helped me cope with or prevent the stress of health issues, financial problems, interpersonal challenges, and other crises. Living with ALS has taught me that we human beings have tremendous power to direct our thoughts, and that our thoughts in turn have tremendous influence on our mental, emotional, physical, and spiritual well-being. So when I am cold, I work to focus my thoughts on my to-do list for the day. Instead of lamenting over my inability to deal with an itch or handle a pencil, I dwell on the gratitude felt over my continuing ability to steer my wheel chair. Rather than take umbrage over other’s misguided displays of compassion, I consider their intensions, and seek to ease their discomfort. Taking the time to appreciate the beauty around me is just one of the important, yet simple, practices that keep my attention positively focused. Thank God for Spring, which makes it so much easier to apply.

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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.

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