One Father's Extraordinary Journal of Living Longer with ALS
Blessings in Disguise – An excerpt from: From Nightmares to Miracles

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.

Comments (1)

The list of techniques and remedies I have tried over the past 8 years is enormous. That is one of the reasons I wrote From Nightmares to Miracles. A person afflicted with a medically incurable illness can burn through a considerable amount of time, money, and energy trying to find alternative approaches that work. These are three vital resources that most people with ALS (PALS) don’t have in abundant supply. In the book, I discuss dozens of approaches including herbal remedies, vitamins, homeopathic treatment, electronic and frequency devices, spiritual healing techniques, exercise, diet, and more. I explain what worked for me, what didn’t, how I arrived at my current protocol, and why I believe that what I have learned has implications far beyond recoverin from ALS. While the same approach may not work for everyone, I believe there are elements of the practices I follow that have universal application.

It would probably help to alleviate some healthy skepticism by providing some evidence for my claims. So, let me give you some. Late 2006, was a huge turning point for me. My weight had dropped to a mere 99 lbs. This was barely more than half of my pre-ALS weight. My fairly athletic, 5’11’’ frame typically weighed in at about 185 lbs. prior to onset of the disease. By the end of 2006, my 99 lb., wheelchair- bound presence resembled that of someone who had barely survived Auschwitz. Every rib in my torso protruded though my skin. My arms had grown so weak that they required rest after two hours of moving a computer mouse. My skin was pale and dry, requiring lotion on a daily basis to avoid breakdown. Fatigue made afternoon naps necessary to get through the day. Restlessness in my legs from poor circulation made sleeping for more than two hours at a time a rare occurrence. Chronic joint and muscle stiffness and cramping interfered with sleep, and caused excruciating pain when being lifted out of bed in the morning.

Today, I weigh 138 lbs. Health practitioners are constantly amazed by the color and tone quality of my skin, and the complete absence of bed sores. Waking up during the night rarely occurs more than once to relieve my bladder. I rarely need a nap, and typically spend five to six hours a day at the computer, stopping for other activities vs. fatigue. Chronic pain is absent from my life.

All of the health care practitioners who see me on a regular basis find these changes astounding. Weight gain for someone in the advanced stages of ALS is extremely rare, as are the absence of bed sores for someone bound to a wheelchair. It is also quite common for someone with ALS or any life-threatening illness to suffer bouts of depression. I can assure you that my current state of mind is anything but depressed.

So by now, I would hope that this information has raised interest in your minds about how these changes have been achieved. In my next entry, I will begin to share what has worked for me in beating back the ravages of ALS, and handling life’s twists and turns with greater poise, patience, confidence and effectiveness. Stay tuned!

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