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.

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.