Good Hope and Bad Hope

To illustrate the typing joke...

Source: Amelia Bartlett / Unsplash

A month has passed since my neck surgery (fusion at six levels), and I’m doing great. The incision is less Frankenstein-y every day, and I can even drive. The worst side effect has been with my nerves. Specifically, the tips of the ring and pinky fingers on my left hand have little to no sensation, thus requiring me to look at my hand when I type words like “wax” and “saw.” I can definitely live with that as my biggest limitation.

But despite the clear success of my surgery and the (mostly) consistent improvements as I heal, I found myself bickering with my mom about my future well-being. We were around the Passover table when my brother asked about my prognosis, and my mom piped in with, “Hopefully this will be her last surgery.”

It’s a sweet and reasonable wish for a mom to have, but I found myself arguing with her: “It won’t be, and we have to accept that.”

And that’s true. There is a very high likelihood that I will need more surgeries because I have Ehlers-Danlos syndrome, which results in undue wear and tear and my joints. So far, at the tender age of 50, I’ve needed two knee surgeries, two hip surgeries, and three spine surgeries. There is no cure for the condition; the best thing I can do is keep my muscles as strong as possible to support my joints. I went on to explain to my mom and my brother, “It just hurts too much to get my hopes up for something that’s not going to happen.”

But, it’s also true that having hope is good for my health. A recent meta-analysis of hope and optimism in people with chronic illness was clear:

The results of the studies presented in this analysis suggest that there is a close relationship between the constructs of optimism and hope and a reduction in the effects of chronic disease.¹

I do, in fact, have a generally hopeful disposition. If I didn’t, I wouldn’t bother with weekly movement therapy, talk therapy, and endless visits with all manner of somatic and medical professionals and practices and meditation and supplements—I’ve tried them all. Taking care of myself well enough to work and parent is a part-time job and an expensive one, and I have to hope and believe all that will help me enough to make it worth it to spend all that time and energy.

Nevertheless, I still experienced that surge of frustration at my mom for her positive outlook because it’s also true that too much hope and optimism sometimes has me veering into magical thinking, and that has me doing things and going to events and acting in ways that I know will cost and possibly injure me. For example, three weeks after my surgery I decided it was a good idea to drive half an hour away and sit in a lawn chair to watch my son play in the state ultimate frisbee tournament.

You need to be able to turn your head easily to watch ultimate frisbee—it's fast.

Source: Jennifer Sarche

Sure, I got a lovely hit of dopamine, but we both felt terrible when I also lost three nights of sleep and endured days of severe pain that I’m still recovering from.

There must be a line somewhere between the good hope that helps and the bad hope that harms. I need the belief that I can feel better so I’ll take actions like physical therapy and good nutrition and all the "right" things. But I also need realism and acceptance that I have this limiting condition that means sometimes I have to say “no” to things I really want, and sometimes I need surgery to stabilize my joints.

I really like this article about the push/pull between optimism and resignation, where the author points out that it's a little fuzzy, but we can usually figure out whether what we're hoping for is reasonable. He says if it is reasonable—then that's the good kind of hope. For example, it's not reasonable to hope that my condition will magically go away and I'll never need surgery to repair my spine or another joint again. But, it is reasonable to hope my next major surgery is a long, long time from now. And, I can make that hope come true by doing my physical therapy and staying fit and healthy as I can.

In the meantime, I'm going to go ahead and hope I can go to all the graduation parties I have coming up. I hope I get the sensation in my fingers back. I hope by the fall I can be at every one of my kids’ soccer and frisbee games, cheering for them at the very top of my lungs.