This post is a celebration of the community of family and friends who have stepped up to support and love my wife, Phyl Gerber, who was diagnosed with ALS (Lou Gehrigs Disease) in the spring of 2017. We have posted Phyl’s speech which she (and I) delivered at the opening ceremony for the 2019 Western Massachusetts Walk-a-Thon fundraiser in Look Park on May 18. Several hundred people attended including about 75 who walked with Phyl.
The following is Phyl’s speech…
Hello family and friends! It does my heart and soul good to see so many people out here to support those of us dealing with ALS. At this time, I am dealing with one of the many symptoms of ALS, a weakened voice. Since I plan to chat a lot today, I want to save my
The following essay expresses some of my thoughts on the experience of being a caregiver. I am both saddened by the need to be in this role because of the suffering my wife has had to endure and grateful that I have the flexibility and resources to devote myself to “the most important job” I’ve ever had in my life…..
John M. Gerber
Those of us caring for a loved one diagnosed with a terminal illness know suffering. Caregiver suffering is different from that experienced by the loved one, but is still the “flip side of the same coin” – intimately connected through the pain and confusion caused by the disease. When we first learn of a terminal prognosis for someone we love, it may feel like we’ve been pushed off a cliff and are flailing and falling out of control, trying to cling to our loved one who seems to be just out of reach – and falling even faster. Looking for a way to stop the fall we desperately grasp for facts about the illness, information about potential treatments, alternative therapies, and perhaps even stories of miracle cures – something to ease the pain and end the feeling of powerlessness.
It was on March 15 (the Ides of March) 2017 when our world began to shrink. My wife and I left the neurologist’s office in Springfield, MA after the diagnosis and were sitting in the car outside when the process of withdrawal and isolation began. “I suspect you have Lou Gehrig’s Disease” he had stated gently, leaving open the possibility that he might be wrong – a possibility we clung to for a few weeks – but he was not wrong. The diagnosis of ALS marked the beginning of a journey in which the pace of our lives slowed down and became more isolated from those of you who are still living what we call “normal” lives. In spite of the love of family members and the incredible support of friends and local community, the person with a terminal illness feels so very alone – some of the time.
The following excerpt is from a book by K. D. Singh titled The Grace in Dying. It describes the feelings expressed by my wife, who has ALS, in words far more eloquent and
Zen master Thich Nhat Hanh has been practising meditation and mindfulness for 70 years and radiates an extraordinary sense of calm and peace. This is a man who on a fundamental level walks his talk, and whom Buddhists revere as a Bodhisattva; seeking the highest level of being in order to help others.
Ever since being caught up in the horrors of the Vietnam war, the 86-year-old monk has committed his life to reconciling conflict and in 1967 Martin Luther King nominated him for the Nobel Peace Prize, saying “his ideas for peace, if applied, would build a monument to ecumenism, to world brotherhood, to humanity.” Continue reading We are apart of – not a part from Mother Nature→
This morning I prayed….. in fact, I pray every morning. I pray for the knowledge of God’s will for me and the power to carry it out. I pray to a God that is beyond my understanding. I pray because doing so has resulted in long periods of serenity, moments of clarity, and the chance to practice using spiritual tools that allow me to get through the difficult times and dark periods. I pray for peace – and I work for a more sustainable world that will be free from want and fear – for all.
Pope Francis has become something of a sustainability superhero today, finding his picture on the front covers of Rolling Stone, The New Yorker, and TIME magazine. He has been an outspoken critic of the dominance of the human desire for short term financial success at the expense of the other two sustainability goals of social justice and environmental quality. But I have to wonder if we are not expecting too much from just one man. If we are to realize positive change and a more sustainable world, this Pope needs our help.
With a deep breath and a prayer, I wade into a topic I have avoided writing about (or even talking about). Although I’ve posted more than 100 blogs on Changing the Story over the past few years, I’ve rarely shared any thoughts on spirituality and never on religion.
So, why would anyone in their right mind want to write about something as controversial as their own particular form of religion – especially one as unpopular among academics as the Roman Catholic Church?