One Father's Extraordinary Journal of Living Longer with ALS
A SerenAide for Lou Gehrig’s Disease

In 2005, I was beginning my fifth year of living with ALS, and despite several trips to Germany for alternative medical treatment, nothing seemed to be working to deter the slow but unrelenting progress of the disease. Among the most difficult things I had to deal with that year was to watch the toll that my physical deterioration was taking on my wife. Diane is the kind of person who is always available to listen to and console others about their problems, but rarely talks about her own. The depth of her consideration for others is one of many rare qualities that have caused her choir students to develop a deep respect, love and attachment year after year after year.

By the spring of 2005, the students had become painfully aware that something was wrong, but they weren’t quite sure how to reach out. One student took the initiative to express in writing what many of the choir members were feeling. In Diane’s own words, when describing it to others, “I received the most wonderful letter from a student who expressed concern, and said even though it was written by this one person, ‘ I am just another face in the choir, just another one of your many children.’ The letter went on to say, ‘You have been the object of strength to us this far, now let us return the favor. Let us help you…. Let us heal you.’” The letter continued with a quote from a song that Diane had been teaching that year, entitled, ”On the Morrow”. It said, “After all, ‘on the morrow, when the sun is at rise… no more sorrow in thy eyes- Trust in the morrow, and it shall come’”.

A few short weeks later, the students had collaborated with support from some of the choir parents, and school administration, to produce a benefit concert on our behalf, which they entitled SerenAide. They enrolled students, teachers and others from the community to perform an entertaining and heartwarming evening of music with only 3 weeks’ preparation. Several times during the evening, my family and I were deeply moved as student performers shot adoring glances toward their beloved teacher, seemingly in pursuit of some sign of approval. When a small ensemble of choir students gathered just a few feet in front of us to perform the final number, however, we were completely overwhelmed. Their selection and heartfelt rendition of “On the Morrow” simply brought us to our knees.

That evening in April of 2005 was amazing and magical. What is even more amazing is that the students have turned SerenAide into a tradition. On May 27th, we will enjoy our sixth annual SerenAide concert to raise money for the fight against Lou Gehrig’s disease. If you happen to be in the vicinity of J. P. Stevens High School in Edison, N.J. at 7 p.m. on that evening, we would love to have you join us. It is an evening you will not soon forget!

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A constant source of amazement to me during my journey with ALS has been the astounding number of blessings that have come my way as a result of my illness – blessings of friendship, physical assistance, monetary support, insight and more. What I have also learned through my experiences with this illness is that blessings don’t always look or feel like blessings. Sometimes it’s the insight derived from a bad situation or the change that emerges from it that turns out to be a valuable gift. A difficult interpersonal situation or the loss of a critical resource can stretch you to the limits of what you know about handling adversity, but can also result in some important lessons. Having had several such opportunities in recent years, I have become more attuned to looking for and appreciating the blessings in disguise that adorn my life.

One example of this phenomenon occurred with my first live-in health aide. Ethan (whose name I have changed to protect the guilty) actually possessed a number of very positive attributes. He was extremely well organized, kept the house clean and in good order, transferred and attended to me well on a physical level, and was respectful in his behavior toward my wife and children. For the first several weeks, he was working out quite well. Gradually, however, it became apparent that Ethan had some personal issues that were becoming increasingly uncomfortable for me and beginning to impinge on the quality of his care. The man had very strong opinions, a tendency to move quickly and unnecessarily from discussion to argument if offered an alternative perspective on an issue, and a degree of self-absorption that demonstrated little regard for the emotional impact of his behaviors on others.

My increasing discomfort with these behavior patterns brought into sharp focus my biggest problem in dealing with this first stranger in our midst. I was feeling extremely vulnerable. Here I was at the mercy of a man who was becoming increasingly emotionally abusive and upon whom I was totally dependent for all my basic activities of daily living. I felt helpless and trapped, knowing that it might not be possible to find an immediate replacement, and uncomfortable with the idea of placing an additional burden on Diane if she had to take off from work to care for me until one was found. Unable to call the home health aide agency without his assistance, I was also fearful of further inciting Ethan’s dysfunctional behavior by revealing my intent to replace him.

Ethan was with us for a period of just under three months. It seemed much longer, and given the stress produced by the situation, it lasted much longer than it should have. Our relationship ended on a day in late June that, by no coincidence, happened to be Diane’s last day of work for the school year. Ethan had launched into a prolonged tirade over a question I had asked him while he was showering me that morning.

The tirade lasted well over an hour despite my efforts to clarify my intention and despite efforts to remind him that he was creating an intolerable level of stress for a patient with Lou Gehrig’s Disease. His rant evolved into anger over how unappreciative I was and threats over how difficult it was going to be to replace the quality of his care.

Bolstered by the knowledge that Diane would be home for the summer within hours, and having reached my breaking point, I screamed at him, with expletives included, exactly what I thought of the quality of his care. Ironically, it was my lashing back that took the wind out of his sails and calmed him down. He was so “hurt” by my comments that he decided he could no longer work with me and would have to leave immediately. I was both shocked and relieved by this sudden turn of events. Ethan left that afternoon, and a replacement was provided the very next day.

Given the intensity of this episode, it could probably be argued that Ethan’s tirade was anything but a blessing. So let me explain why I see it as such. The gifts that Ethan left me were a heightened awareness of my fears about being vulnerable, and an opportunity to reality test and mitigate those fears. I learned that, while I was physically limited, I was not helpless to take care of myself. There were subsequent aides who also did not work out well and needed to be replaced. Yet I never again feared the changing of the guard, or being left without care in the process. I discovered that there were friends, family members and multiple agencies that could be counted on to step in and fill the breach, if necessary, when transitioning to a new aide. This experience made me more aware of the support and resources at my disposal, and how only fear could prevent me from exercising my power to deploy them.

Some might argue that my experience with Ethan was more of a disaster than a blessing. But consider the impact of that choice. First of all, to consider Ethan the perpetrator of a disaster would elicit in me strong feelings of blame toward him, generating strong negative energy that would not serve me well. It would distract me from my own culpability in allowing the situation to continue longer than it should have. I would deprive myself of some very important learning: that I am not at anyone’s mercy; that I do not need to be driven by fear; that I have many resources available to me and the power to use them. So, rather than demonizing Ethan, I choose to remember him with gratitude for providing me with a powerful, if painful, learning opportunity that has helped me to evolve to a much calmer, more deliberate and more effective manner of dealing with life’s little crises.

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