Giving Up Isn’t Giving In

Sometimes surrendering gets you the win

My sister has a terrible disease

It’s rare enough that you’ve probably never heard of it. It’s a progressive neurological syndrome, incurable, eventually fatal. Not Parkinson’s, though it has some similarities. I know several people living with Parkinson’s and while that’s a condition I wouldn’t wish on anyone, I’m pretty sure my sister would trade it for her malady any day of the week. In the past three years, it has transformed her from a sweet-natured, witty and vibrant world traveler into a frail invalid who can’t keep track of dates or times or pills but who still has full, tortuous awareness of the magnitude of her loss.

She lives about a five-hour drive from me, and I hadn’t been able to see her in months, of course, because COVID. We can Facetime if her caregiver can help her manage the technology, which isn’t often; the caregivers have many other things to do. Even standard phone calls have become increasingly difficult. But now, with both of us fully vaccinated, I was at last able to take a long weekend and visit her. 

“I don’t understand the point of her suffering.”

For one stretch of my long drive, I called (hands-free, natch) the friend with whom I can talk about things like this, the one who gets it and gets me, and who’s familiar with the situation. “I mean,” I continued, “if it’s about acceptance, then okay, the universe has made its point, don’t you think? How is it ennobling that she can’t go to the bathroom by herself?” 

My friend knows me well enough to know that I don’t think that what’s happened to my sister is some kind of trial of faith or the whim of a deity whose thumb hit the “SMITE!” button just when Sis was walking by. Bad things happen to good people all the time. Nobody said life was fair. 

Still, when one of the dearest and most important people in your life is in the process of being slowly whittled away by a painful and baffling disease, it’s hard not to protest. My friend is also far too deep and wise to spout comforting platitudes, but she did suggest that developing compassion and understanding in the people closest to my sister could at least be one positive outcome.

“Yeah, maybe,” I said. “But it seems like there could be an easier way.” My struggle with seeing my sister in her current state, I said, comes from the pain and frustration of not being able to do anything to change it.

That’s when a light flickered on

My spiritual path has been conducted in fits and starts, more of a random series of day hikes than a deliberately planned journey. But on this weekend trip to see my sister, about which I had such deeply held and murkily mixed feelings, I stumbled on a clear view. It’s a perspective I’ve resisted, because like a lot of people, maybe especially Westerners, I am easily confused by the whole notion of acceptance.

Wouldn’t you know it, while settling into my hotel room, I stumbled upon an article about popular misconceptions of Buddhism, but its main message was the difference between acceptance and resignation. Or, one might say, between surrender and defeat.

I don’t know what happened to that article, or I would cite it here. I’m grateful to whoever wrote it. Its metaphors stuck with me with the force of parable. Here’s one: you’re lying on your back, watching the clouds. Being clouds, their nature is to come and go, to form shapes and then dissipate. It makes no sense to get upset because you wanted a unicorn but instead you got a choo-choo train. 

Or, you’re playing Tetris. You know, that old video game with the vaguely Russian earworm theme music, in which random shapes keep descending from the top of the screen and you try to fit them in whatever space you can find for them. The point is to accommodate the shapes you get as skillfully as you can. It’s not a winning strategy to swear at the screen because you don’t get the exact shape you want.

My refusal to accept my sister’s plight was like yelling at the screen

It did nothing to change the game. It only made me angry and unhappy. So I made myself a promise: I would stop wishing things were different than they were. A simple principle, though not an easy one. I had to remind myself of it continually.

But it worked like gangbusters, as long as I remained mindful of it. Once I stopped inwardly whingeing about the reality of my sister’s life, I was able to experience my time with her fully, honestly, and at many points, joyfully. That attitudinal shift transformed my time with my sister from what could have been a sad wallow into a deep and meaningful pleasure.

It didn’t change a thing about my sister’s illness

But it did change my experience, and therefore our experience together. It allowed me to see the grace notes in her life as clearly as the difficulties: the devotion of her sons who live nearby, the compassion and skill of her caregivers, the simple pleasures that are gradually re-opening to her now that more of her friends and neighbors are able to visit her again. 

My sister has a terrible disease, and I cannot change that fact. Whether it’s part of some grand cosmic plan or simply a random occurrence that flesh is heir to doesn’t make much difference. I have zero control in either case. What I can do is to choose to not create any further unhappiness by resisting what is. 

The long weekend turned out to be a lot more fun than I expected. Better even than getting to the next level in Tetris.