Saturday, November 4, 2017

Death of a Friend Prompts a Question: How Do We Make Sense of Huntingdon's Disease?

Huntingdon’s is a cruel disease.

The progressive brain disorder, which has no cure, usually appears when people are in their 30s and 40s.

Early symptoms can include poor decision-making, change in personality, irritability, and anger. It ends with loss of mobility and cognition, then death.  

Why am I writing about this? 

Because three weeks ago I attended the funeral of my old high school and university friend Jeff Fast (pictured top, in the late 1970s), who died October 9 from the disease.

At over six feet tall and close to 200 pounds, as a young man Jeff was a boisterous, friendly and easy-going person.

After graduation from university in the early 1980s, he married Janice and became a teacher in Ontario. His first eight years were great—he was remembered warmly as a colleague and good educator.

But things began to change in the 1990s.

Nobody knew it, but Jeff had Huntingdon’s. It caused his personality to change. He had run-ins with the school administration. He grew short-tempered with students.

Soon, he lost his job. In 2001, he was asked to leave the home.

Then, in 2002, he got the diagnosis. The discovery came after his mother was found to have Huntingdon’s.

While glad to know what was causing his problems, it was still “a terrible thing for all of us,” Janice says from her home in Ontario.

“He had lost everything. And we had all lost so much, too.”

The years following the diagnosis were a pivotal time for her.

“My heart changed,” she says. “While those difficult years before the diagnosis could never be undone, God gave me a strong sense of what I was supposed to do—to care for him.”

As Jeff became progressively weaker and more confused, losing speech and the ability to walk, she visited him regularly in the hospital, taking care of his various needs.

She did it for him, but also for her children. The terrible thing about Huntingdon’s is that if one of your parents has it, there’s a 50 percent chance you will, too.

“I wanted them to know that, no matter what, they won’t be abandoned if they develop it.”

The night before he died, the family was with Jeff, telling him they loved him, that it wasn’t his fault.

Together, they remembered who he was before the disease stole him away.

Thinking about Jeff, it’s hard not to wonder how such a terrible disease could exist. Why would a loving God permit Huntingdon’s?

That question was also on the mind of Arthur Boers, an Anglican priest and long-time friend of Jeff’s who preached at his funeral.

“How do we make sense of a man dying at age 60, after enduring the wasting disease that also afflicted his mother?” he asked.

“How do we make sense of Janice being a young widow and young adult children losing their father? How do we make sense of things that went wrong in Jeff’s life, pains and sorrows, when he was so gifted and passionate and exuberant and larger-than-life?”

Our only response, he said, is not to try to figure it out, but to give testimony “to what we know and experience of God” through suffering.

This testimony does not explain suffering, he said, and “certainly does not solve the problem of suffering.”

But it does “hearten us, sustain us, help us carry on and move forward, testifying to who God is for us, to how we experience God’s accompaniment, and, yes, also to how we at times feel let down by God.”

As for Janice, she has no grand theological understandings about what happened. All she knows is that she needed to “lean on God again and again” to make it through each day.

“I don’t know why this came into our family, and I don’t spend time asking why,” she says. “In a way, it doesn’t matter. There is no clear answer.”

But the experience taught her that “no matter how big the challenge is, I don’t have to do it by myself. People from our church helped out in so many ways. I couldn’t have done it without them.”

Huntingdon’s, she says, “took so much away from Jeff, and from us as a family. But I no longer debate with God about it. I just lean on him for support.”

From the November 4, 2017 Winnipeg Free Press

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