Friday, October 28, 2016

WunderGuy vs. The Brain Tumor (Part III)

Fred refuses to quit. Wish he'd just give up and skulk off to shrivel up and leave us alone.

Recently, Robert's brain tumor is causing his entire body to spasm into the equivalent of a giant, human fist. He juts his head forward, perching his chin on his chest, stretching his neck. He cranks his knees up to his nose. Then, as the tension in his body builds, he bellows like a bull stabbed by a matador.

Imagine the joy that permeates our house when this begins at, say 3 a.m.

We're trying the gamut of things from meds to alternative options to try to help him relax. Because we've all discovered: if Robert can't sleep, can't nobody sleep.

I've learned a few things in the last month. At the top of the list, I've learned what extraordinarily bad taste it is to begin a conversation with "Have the doctors given you a time frame?" As if I am able to mark on my calendar "Should be a widow" on a specific date. As if I would want to.

I've learned that if you want to connect with People Who Get Things Done, blogging is an effective tool. Not long after I posted the last update, in which I related my abysmal meeting with some local Hospice representatives, a higher Hospice muckety-muck called me. We chatted a bit and she put me in touch with someone who coordinates a different branch of Hospice volunteers. It all sounds very promising, but nothing has actually happened yet. Still: yay, blogging!

I've also learned to be less prideful. I've always been very good at doing things on my own. I'm an only child. I'm a Virgo. I'm a Midwestern farm girl. I am the epitome of "I've got this." But I am discovering that if others offer to help share the load, it is a great blessing to let them.

When dear friends wanted to set up a GoFundMe for Robert's medical expenses, I balked. I'm not big on the idea of asking people for help. There are lots of folks worse off than we. But then my friend Paul set me straight. "Get over yourself," he said. "People might want to help and have no idea what to do -- because, really, there is nothing they can do. This gives them an outlet." So I squelched my pride. And I have been overwhelmed -- truly steamrolled flat -- by others' generosity.

That generosity is currently in overdrive. The same friends who did the GFM campaign are hosting a live theatrical reading event on November 6, here in Southwest Michigan, to benefit our family. I can't even wrap my brain around how much work and energy and time and effort these wonderful people have put into doing this. When eventually, I'm on the other side of crisis (I believe this will happen. Someday.), I want to remember this and pass it on.

And I've learned that there is no such thing as letting go gracefully. Nor should there be. Life is worth fighting for. It's bright and messy and sharp and sweet. It's an uneasy ratio of exhilaration and boredom, punctuated by both joy and pain. Robert's brain is shutting down. I hate this. Most of the time he cannot even reliably answer "yes / no" questions. But he will respond to some things on autopilot. If you say "How are you today?" He'll say "Great."

Some days I find myself saying "I love you" just to hear him say "I love you, too." On those days, I don't care whether he knows what he's saying or not.

A week ago, my friends Wendy and Aaron watched Robert so I could get out of the house for a little while. When I returned, Wendy said Robert had woken up from a catnap and been a little weepy. This was so unusual, I asked him if he remembered that. He did. I asked if he remembered what made him cry. He smiled: "I had a dream. I dreamed I was healed."

Ah, my love. May all your dreams come true.


Trudy Morgan-Cole said...

Ami, we haven't been in touch for awhile (since I read your book, I think!) and I hadn't been keeping up with your blog or what was going on with your family till a mutual friend shared your GoFundMe page on Facebook. I'm so sorry you and Robert are going through this and so in awe of your grace and courage. You are in my prayers.

Ami Hendrickson said...

Thank you for the kind thoughts, prayers & for your support. Fred grows more insidious by the day. Soon, I fear, he will win this battle. Thank God the war is already won. :)