From Disbelief to Advocacy: A son responds to his father’s ALS diagnosis

Brett Wilson was just 22 years old in the summer of 2019 when his father Rick was diagnosed with ALS.

ALS stands for amyotrophic lateral sclerosis and is a fatal nervous system disease.

In Canada, Rick was unable to secure a definitive diagnosis and so he travelled to the U.S.

“The verdict that he ‘might have ALS’ was not good enough for us,” Brett explained. “We needed clarity about what is essentially a death sentence of a disease since ALS involves a usual prognosis of a 2-5 year lifespan after the onset of symptoms.”

While awaiting confirmation of the disease, Brett refused to believe that his father had the terminal illness.

“I refused to believe it or talk about it,” he told me. “I kind of shunned my extended family who wanted to talk about it and, of course, for a while, it’s all they would talk about.”

Once Rick received the formal diagnosis, Brett remembers that his own life became “a cloud of stress.”

His grades took a hit in his fourth year of university and he marvels at how something about which he had previously known next to nothing became a consuming and omnipresent reality.

Continue reading

Caregiving as a school in humanity

This evening I read a short book written by my friend and colleague’s grandmother.

In the brief memoir, Walk with Me: growing rich through relationships, author Judy Rae reflects on the experience of caring for her husband Joe while he developed Alzheimer’s.

Presented with honesty and infused with a faith, Rae offers a window into how caregiving can be a school in humanity.

Judy recounts the pain and sorrow of watching her husband lose his memory and she does not skirt the undeniably tragic dimensions of this disease.

“I have been told that when a person is diagnosed with Alzheimer’s disease, he is introduced to a world of loneliness, rejection, terror, confusion, misinformation, and termination. Can this tragedy bring with it any victory into our lives?” she asks.

Rae speaks about how Joe became embarrassed and humiliated by what he could no longer do or remember. Despite the continual accompaniment, affection, and affirmation of his wife, Joe’s feelings of uselessness regularly caused him to get frustrated with himself and even to cry.

Continue reading

The Opposite of Social Distancing

Jozef De Veuster was a Belgian Catholic who asked God to be sent on a mission.

Having done his formation for the priesthood in Belgium, he was then sent to Honolulu and was ordained two months later.

He took the name Damien and began his priestly ministry in the Hawaiian Islands.

During Fr. Damien’s time, there was a public health crisis. Mortality rates were high due to infectious diseases for which there was no herd immunity. Chinese workers were suspected of having brought the disease to the islands. The outbreak was not well understood and experts were unsure as to how it spread, whether it could be cured, and whether transmission could be stopped. The government passed mandatory quarantine legislation, even sending some people to isolate in remote locations. The officials insisted that these were not prisons, but there was certainly not enough medical supplies or doctors and nurses. Some experts thought the lepers would be better off dead. One health official conjectured, “It would seem that even demons themselves would pity their condition and hasten their death.”

Continue reading

“Dying People Are Not Afraid of Dying”

Yesterday, I was flipping through a new book by Rabbi Steve Leder titled, The Beauty of What Remains: How Our Greatest Fear Becomes Our Greatest Gift. The book emerged from a popular sermon the rabbi delivered about death on Yom Kippur, from the rabbi’s extensive experience accompanying the dying and their grieving families and, importantly, from the fruit of his own experience suffering the loss of his father.

I read the initial chapters and this paragraph in particular really struck me:

Whoever wrote the third chapter of Ecclesiastes (later made famous by the Byrds) was right. There really is a time for everything. Most people are ready for death the way we are all ready for sleep after a long and exhausting day. We just want to pull the covers up around our aching heads and settle in for the peace of it all. We are not anxious about sleeping. We are not depressed about it. We are not afraid of it. Disease, age, and life itself prepare us for death. There is a time for everything, and when it is our time to die, death is as natural a thing as life itself. Consider this very good news for those of us who fear death. Dying people are not afraid of dying. If you are afraid of dying, it is not your day. Anxiety is for the living. So if you are worried and anxious about dying, you’re not dying. Which means you have time to let death teach you about living and loving your life. 

Do you have any reason to dispute Rabbi Leder on this?

If not, does this explanation change your understanding of death?

Lastly, does hearing of the peace that comes with rest alter the anxiety of living at all?