What’s A Life Worth Living?

Photo credit: IrishExaminer.com
I tend to dislike (perhaps unjustly) the “social justice” advocates – you know, the squeaky little soap-box dancers who seem to think just getting people to know about something will solve the problem (and so propound their lessons ad nauseum). (Or a hashtag. Seriously?! You think Boko Haram reads hashtags? They’re too busy running Nigerian Prince scams.)
As I said, this is likely an unjust characterization of many, who genuinely have a passionate cause close to their heart and want to share it honestly and faithfully. As example, I offer Nadine Brandes, whose recent #Called2Speak post sought to dignify the teenagers who don’t fit the “lazy, greedy, immature, full-of-themselves” stereotype that plenty of adults actually match. We must remember that stereotypes usually spring from statistics. However – though Mrs. Brandes didn’t use these words – just as the “ill-dressed, gunslinging, black teenager” stereotype hurts the ones who are actually trying to get ahead, finish school, and contribute to their community, the teenagers who actually do think the world revolves around them give the ones diligently taking notes in class and Sunday school a bad reputation.
(I was just born at 30, then aged to 60, so skipped the whole problem. Plan to have a mid-life crisis soon.)
And despite my critical attitude toward the cause-trumpeters, I realized I do have a few passionate causes of my own. In the spirit of being a team-player, I offer my own #Called2Speak post:
The Living Undead
Back in college, I did an extended study of the phenomenon “locked-in syndrome” (as part of a diversity propaganda initiative for English class…bleh). I started my study from reading The Diving Bell and the Butterfly, a short, entertaining autobiography dictated by Jean-Dominique Bauby after a stroke paralyzed him from the face down, leaving him unable to move at all except for his eyelid.

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And yet, after he awoke from the coma caused by the stroke, he was very much aware of his surroundings. He had the nurses he liked, and the ones he detested. He treasured visits from his children, pondered philosophy and literature during the long, lonely afternoons, and dictated an autobiography to a secretary by blinking his eye on the correct letter. That’s right: blinking.
Although he died of pneumonia shortly after the book was published, it became an international success, and was also made into a movie.
Happy time over. Let’s bring it down and make it personal.
Do you have a family member, maybe a grandma or aunt, in a nursing home? Maybe they’ve recently become ill, and are in the hospital?
My grandma died of brain cancer. During the last few months of her life, she was confused, and didn’t really talk like herself. She (and her whole house) smelled funny, because she’d lost her inhibitions. Speaking of said inhibitions, she also gained weight, because she started eating whatever we set in front of her (actually a lot of what was just on the edge of reach).
My family went to church just down the street from their house. One of us would sit with her early, so my grandpa could go to church, and then after our own service we’d all bring dinner to their house. Every single week. It wasn’t always fun, especially in the last few weeks when Grandma could only sit in the chair or sleep. But she was our grandma, and we “practiced loving” her (1 Jn. 3).
My mom tells a heart-breaking story from when she was an RN in a nursing home. An old man’s family came to visit him, and they gathered around his bed as they talked around him…then left. As my mom was assisting him, she asked him, “Are you hurting?” He turned and looked straight at her as tears trickled down his face.
He heard them. He saw them. He had feelings, and fears, and thoughts, but because he couldn’t speak or move, his family essentially ignored him.
Whom do you ignore?
I’ve heard of a book called Ghost Boy, about 12-year-old Martin Pistorius who fell ill and lost his ability to walk or talk. But his mind was still there, even as his parents discussed the merits of maintaining life support as though he weren’t even in the room. To them, he was a corpse – their son was gone. Inside, he strained and struggled in a prison that was his own body.
Martin Pistorius eventually recovered, but what about those less fortunate? My thoughts go to the woman from Canada (Robyn Benson) who suffered a stroke and was declared “brain dead”, but who stayed on life support long enough for her baby boy to be born successfully (as cited in Dr. Albert Mohler’s podcast The Briefing here and here). The baby is now being raised by his father, Dylan Benson.
You don’t have to suffer from “locked-in syndrome” to be isolated. Many of the people now living out their last days in nursing homes are avoided by their family and their social lives are focused around people who are at the same stage of life as they are.
We need connection. We need relationship. Not just teenagers developing into adults, not just babies adjusting to the outside world, not just adults trying to grow and thrive as they deal with the struggles and responsibilities of life. All of us – even the drooling, smelly people staring eerily out of the hospital bed.
For once, let’s let go of the “socially repressed” and “discriminated against”, and “Speak Up” for those who literally cannot speak for themselves – because their bodies are too broken for them to form the words, not because they aren’t aware or don’t have unique thoughts they want to express.
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