Passion

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.

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Is there any value to a bucket list?

The first time I made a bucket list–which I always insisted on simply calling a life list–I was about 12-years-old.

I almost certainly got the idea to write down my life goals from Oprah, Dr. Phil, or Dr. Laura Schlessinger– all of whom I paid attention to at that age.

And so I wrote up a mission statement for my life (which I still have memorized) and wrote down a long list of all the goals I could possibly dream of.

Over the years I kept adding to it until the list became about 190 items long with the note: “To be always continued… As long as I have breath, I will live with passion and purpose.”

The items were listed in no particular order, although the fact that “Eat Greek Salad in Greece” was number one indicates how highly enthusiastic I was about that one.

Some goals were quite serious (e.g., 3. Make and honour a lifelong commitment , 23. Never be “too busy” for people, 55. Speak in front of 1,000 people or more about something important, etc.).

Some goals were quite civic and reflected my early passion for politics and history (e.g,. 28. Vote in every election in which I am eligible, 49. Visit New York and the United Nations Headquarters building, 31. Put a poppy on the Tomb of the Unknown Soldier monument on Remembrance Day in Ottawa, 101. Visit Fort McMurray, etc.).

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Marking Time: Do you remember where you were when… ?

“So teach us to number our days
that we may gain a wise heart.”
– Psalm 90:12

I remember seeing the news of Palm Sunday church bombings in Egypt on my phone while I was in Poland.

I had not been to Egypt before but of course the photos gripped me.

That was a year that the Western and Orthodox calendars synced up and so Christians worldwide were commemorating on the same day Jesus’ triumphal entrance into Jerusalem before his Passion.

That suicide bombers charged into two Alexandria churches on this date and in this way indicates that their intent was to wreak not only destruction but desecration.

What was the impact of looking at the those photos on my phone in a small Polish church?

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We are all terminal, so what’s your decision?

One of the best things about doing this daily blog is that my friends now think to share with me anything particularly good and interesting about death or dying that they’ve seen or heard lately.

And so, quite a few of my friends have brought up this homily by Fr. Mike Schmitz’s from Palm Sunday:

In it, he says, “We’re all going to be dead at some point and I don’t think that that’s the problem. I think the problem is that we pretend that we’re not. We pretend that that’s not true and then, when tragedy happens, when death cuts close, I think it cuts through the illusion that my choices don’t matter.”

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If You Can Tell A Story

Is it really possible to blog about death in a way that is consistently uplifting and enlivening every single day of the year?

It’s certainly a challenge.

And is it possible to tell edifying stories about the difficult, messy, and painful realities of life with grit and sincerity?

Not only is it possible. It’s vitally necessary.

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