Monday morning, July 5th, at approximately 11:15 AM, my stepfather, George Rieger, passed peacefully from this world. He had been struggling for several months with heart valve weakness, breathing difficulty, excessive fluid and other complications. While we will miss him dearly, we are relieved that he is finally at rest.

George was one of the most giving people I have ever had the privilege of knowing. He wasn’t polished or worldly, and he didn’t have much, but whatever he had was yours. He was the type of person who would stop on a dark lonely highway in the middle of the night to help you change a flat tire when everyone else was passing you by. The man had a heart of gold, and was loved by many who knew him. He will be missed.

George lived in Florida, where he was cremated and will be put to rest with my Mom. He told his partner, Joyce, that he did not want any ceremony. Since he was not Jewish, I wasn’t sure that there would be a shiva. After meeting with the Rabbi, I discovered that it would be possible to sit shiva and do a memorial service in honor George’s memory. This was a great relief to me. I needed closure. It was a great source of frustration being unable to travel to Florida and be with him during his final days. Although we spoke often by phone, and frequently during the final weeks, it just wasn’t the same as being there with him and letting him feel my love in person.

In addition to the typically powerful emotions that accompany a loss of a loved one, this has become another challenge to overcome in living with ALS. One of the symptoms of ALS is something called “emotional lability”. en.wikipedia.org/wiki/Motor_neurone_disease#Emotional_lability This means that you tend to be overcome by your emotions much more easily than before contracting the disease. While I don’t consider myself to be an overly “macho” type of guy, I must admit to finding it somewhat uncomfortable breaking down unexpectedly in the middle of a sentence when thinking or speaking about a sensitive topic like the loss of my stepfather. To put this in perspective, the same thing can happen in the middle of a sappy romantic comedy or in response to someone going out of their way to do me a favor. While I have always been a fairly passionate guy, this behavior is considerably more extreme than what I experienced prior to Lou Gehrig’s disease. Sometimes, I just have to laugh about it, because getting upset only makes it worse. I certainly don’t want to lose my sensitivity, but it would be nice to have a little more balance.

This is a time for grieving, and I will allow myself to do so. I look forward to a time when I can look back fondly on my memories of George without feeling so much of the pain of his loss. Regrettably, this is far from my first experience with losing someone about whom I have cared deeply, and I have learned a great deal about grieving along the way. It is however, the first time having to go through this process with advanced ALS. Loss is a process with which we all have to deal sooner or later. I would love to hear some of your stories about what has helped you to get through it.

Life and the media are filled with examples of people who have beaten the odds and overcome seemingly insurmountable obstacles through the sheer force of will. One of the more dramatic images that come to my mind is actually a fictional and quite humorous one with which I often identify. I am referring to a scene from the 1975 comedy “Monty Python and the Holy Grail”, which many of you are probably too young to remember. In this scene, the Black Knight is defeated by King Arthur while trying to prevent Arthur from crossing the bridge that the knight has sworn to guard. Each time Arthur relieves the knight of one of his appendages, the knight dismisses Arthur’s success with some belittling comment. At one point during the fight, with blood gushing in comic exaggeration from his armless shoulder, like water from a fire hydrant, the knight shouts, “Ah, it’s only a flesh wound!” Finally, reduced to an armless and legless torso, the defiant knight screams after the departing Arthur, “Come back here, you lily-livered coward! I’ll bite your knee caps off!” Despite the goriness of the scene, it is hard not to chuckle at the absurdity. Yet I always find myself admiring the knight’s tenacity in handling adversity. Each time I have lost a little bit more of my mobility, I have found myself reflecting on the knight and finding inspiration in his refusal to quit.

Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.

But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.

As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.