The Burden of Knowing the Future

The Burden of Knowing the Future
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Lulu Wang’s film “The Farewell” is based on an actual lie.

The 2019 comedic drama looks at a family’s decision to keep their matriarch ignorant of her stage IV lung cancer diagnosis with a prognosis of death in three months.

Billi, a Chinese American woman, travels to China for her cousin’s wedding, which was a pretext for the entire family to spend time with her grandmother. Billi pushes back on the rest of her family, arguing that her grandma should be told so that they can say goodbye: “If Nai Nai knew we were all lying to her, wouldn’t she be mad?”

“What would she have to be mad about?” her great aunt asks. “She did the same thing herself. When your grandpa had cancer, Nai Nai lied to him, too. When she knew he was close to the end, that’s when she told him. When your Nai Nai reaches that point, I will tell her, too.”

Wang originally told the story of her family’s elaborate attempt to keep her grandmother ignorant of her terminal illness in “What You Don’t Know,” an episode of the popular radio program “This American Life.”

Wang’s great-aunt decided not to tell her sister, because she actually believed that not telling her was a way to prolong her life. Otherwise, she would become overwhelmed with fear and depression. She would stop eating. She would stop sleeping. She would lose interest in life. “The Chinese believe that mental and emotional health are completely linked with physical health,” Wang said.

The dark humor in “The Farewell” resonated with me and my husband, Todd, as did the theme, because we have been living with Todd’s terminal illness for over a decade. Todd noticed he had a weak bicep in November 2009. By June 2010, he was diagnosed with ALS and given two to five years to live.

I’ve often thought that I’d rather Todd not have received his diagnosis so quickly. When he just had a weak arm and we were thinking he had a pinched nerve, a worst-case scenario would have required neck surgery. Something like ALS wasn’t anywhere in our minds, and getting that diagnosis cast a shadow over a couple of relatively healthy years that followed.

In some ways, I’d rather not know as much as I do about the disease. We did need to know what we were dealing with so we could get equipment and manage Todd’s decline as well as possible. But on the other hand, it was hard to look into the future.

At our second ALS clinic, I discreetly observed the other patients. One man could still walk well but had a neck collar. Another walked crookedly and stiffly. Another man in a wheelchair was really thin, wore a neck brace, and his hands and arms hung limply.

Todd wrote of the visit: “Clinic is difficult because I’m not that interested in knowing the future. I have trouble shaking the images of those people in the waiting room, knowing my future will be harder than today. I’d rather live in today.”

It was difficult to live in today when Todd was continually losing muscle function. And even after he completely lost the use of his arms and legs, we continued to go in for the dreaded, semiannual breathing tests. The question each visit was not so much, “Would it be bad news?” but rather, “How bad would the news be?”

A year ago, the results of his forced vital capacity were bad enough to prompt us to schedule his feeding tube surgery while he still had the breathing strength to survive the procedure. That was Todd’s last lung function test and the one that showed the biggest drop since his diagnosis — he’s had no interest in being tested again.

It’s discouraging to think how little time he has left if the rate of decline measured at that last lung function test continues.

So, we are living with less knowledge about where exactly he is in the downward decline that accompanies ALS, and that feels a little better than knowing.

With that smidgen of uncertainty is a faint glimmer of possibility that maybe his breathing hasn’t declined as much as we fear. Maybe it has gone back to the slower rate of decline he had in previous years. Maybe an effective treatment will come to market before it’s too late for Todd. Maybe the life expectancy we projected after that last test will be much longer.

In a July 2019 interview with Terry Gross, host of NPR’s “Fresh Air,” Wang revealed that her grandmother was able to come to the movie set six years after her cancer diagnosis. She only learned of her diagnosis after the movie was released.

We just don’t know the future, and that is a gift.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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