By Sister Lois Anne Palkert, OSF
“The man who makes me cry” is how the chaplain who visits residents at one of our long-term care facilities describes Sam (the name I am giving him). Sam, a former construction worker in his early 40’s, was diagnosed with ALS (amyotrophic lateral sclerosis, a progressive neurodegenerative disease that is 100% fatal) five years ago. A year before his diagnosis, Sam was divorced. He has two sons, now eight and 10, who visit him regularly. At times they will bring some of their classmates.
Shortly after his diagnosis, Sam asked a friend to take him on a road trip around the country. What an adventure that was! Sam is a person who loves life and all that it has to offer. According to his friend, he is “the happiest guy I know.”
Sports are a big part of Sam’s life. He played football in high school, has a picture of the football stadium on the bulletin board in his room, alongside the schedule of games. As an avid bowler Sam scored a 300 more than once. He faithfully follows sports on TV.
ALS has not damped Sam’s spirits, although it is placing increasing limitations on him. The disease has now progressed to the stage where Sam is confined to bed, requiring a lift to move him. Since he can no longer speak, Sam communicates by means of an electronic device controlled by eye movement. In July, Sam was admitted to our long-term care facility and is currently on hospice.
The first thing I noticed on my initial visit to Sam was his broad infectious smile and the twinkle in his eyes. Communicating with Sam is slow and tedious, but Sam is a patient man and both enjoys and appreciates the opportunity to visit. “I control this using my eyes,” he texted me. “Amazing,” I responded. “Technology is amazing,” was his response. “You are amazing,” I replied.
A huge grin covered Sam’s face. That expression spoke volumes to me.
Not every day is amazing for Sam, especially as the disease progresses. He is not certain why God is asking him to suffer with ALS. He is not angry with God, but he does wrestle with the mystery of suffering and this cross, a cross he did not look for, but was given to him. A real cross. A cross he did not want, but rather one that came to him.
Sam struggles with accepting this cross. Asked if he ever cries about his condition and the limitations it has placed on him he responded, “I am all cried out.”
He willingly shares his struggles and gratefully accepts the help and assistance that so many provide to him as he carries this cross. He appreciates the compassionate care of dedicated staff and devoted family members and friends who visit frequently. He also remains connected by means of Social Media. Sam admits that he is a better person because of ALS. Embracing his illness has helped him come to know God in a deeper way and to rely on him as he relies on so many who reach out to him.
Sam trusts that God will provide him with all he needs as the disease progresses. He also believes God will care for his family. Sam truly is an amazing person, a reminder to me of the mystery of suffering and the power of the witness of the sick and handicapped.
Initially my visits with Sam were very brief. It took me some time to be at ease communicating with him. I was always drawn to him by his captivating smile. Now, as I get to know him better and spend more time with him, he both challenges and inspires me. He has an amazing spirit and a positive attitude in the face of adversity.
He truly conveys the message of the Easter Season as one of unparalleled hope, unparalleled joy and unparalleled peace.