Friends who know us well sometimes express amazement at the challenges we have faced. I don’t want to list them all here. I’ll just say that several have observed that it seems statistically impossible for one family to have experienced all that we have.
Just for context: I am used to hearing someone say, “We’ve never seen that before.”
For instance, my daughter
We have a severely disabled daughter with a chromosomal abnormality so rare only 15 to 20 people in the world share it at any given time. More probably exist, but third-world countries won’t have the necessary genetic testing to identify it, so it may get labeled with other things. Still, this qualifies as “rare.”
Once as we drove down the street the front axle of our mini-van just fell apart. We had it dragged to a body shop, where they reassembled it. It fell apart again as we drove it from the shop parking lot. This time an experienced mechanic drove it with us after the repair. We got about five minutes from his shop on the Interstate when an odd sound came from under the car.
“Oh, Lord!” he said as he quickly pulled to the shoulder. “I have been working on cars for over 30 years, and I’ve never heard one make that sound before.”
My relationship with computers
I happily teach college courses in communication studies. When I call the folks in our IT support center with a computer problem, these highly experienced technologists frequently say, “We’ve never seen that before.”
It can make you paranoid
I have a cartoon from The New Yorker taped to my office door. (I can’t reproduce it here, but you might consider buying a print.) It shows God and an angel hiding behind a bush. They fist bump as a man in stereotypical ancient Middle Eastern garb stands at an open door to a house ready to stomp on a paper bag that is in flames. People who misspent parts of their youth on practical jokes have a pretty good idea what’s in the bag. God says to the angel, “At first I was teaching Job a lesson, but now I’m just messing with him.”
I have sympathized with Job quite a bit. Surely this evidence supports the computer simulation theory, the idea that we all live in a Matrix-like computer simulation, something that some scientists take quite seriously.
In such circumstances, a lot of people understandably ask, “Why me?”—a self-pitying question I confess to having asked on many occasions, and one I have frequently heard from fellow members of the community of parents of disabled children.
Philosophical considerations aside, it is neither a helpful nor empowering question. I think we would have given up long ago if we let ourselves stay with that question.
A better question
You might think the better question would be “Why not me?” and that is, indeed, a better question. But we have found one far more useful:
“What do we do now?”
That gets us thinking about what to do about whatever has happened instead of wallowing in the circumstanced that led to it.
The quality of your questions will shape the quality of your answers.
I gotta tell you, life still sucks a lot of times. But it doesn’t suck as long or as hard when I remember to ask “what’s next?” or “what do we do now?” instead of “why me?”