Monday, June 25, 2018

Reacting to Brain on Fire

Brain on Fire. I read the book. I saw the movie last night on Netflix. Both times I was riveted and brought to an emotional place I try not to tap into too often. Don’t get me wrong, I usually love books and movies about struggle, and I especially appreciate topics that revolve around anything brain-related. But if I’m honest, I didn’t even want to write this post.

Because it drags up so much and it keeps it hot on the surface when I prefer it buried.

Keeps what hot on the surface?

The memories. The reality of my sister still living with a malignant tumor in her brain.

I identified a lot with Susannah Cahalan’s loved ones in Brain on Fire. Their struggle, as they grappled with the confusion and heartache that accompanies a rare diagnosis, felt achingly familiar.

When my sister was eighteen, after her fourth or fifth suicide attempt, in addition to other alarming behavior, a discerning doctor encouraged my parents to have her undergo more tests. I was thirteen when my parents sat me down and told me about my sister’s malignant tumor. Up until the radical behavior change, I’d admired everything about my sister, everything from her fiery attitude to her love of writing. She embodied an electric energy and I wanted to be near that energy every chance I got.

That changed. So much about my sister changed in the years that followed her cancer diagnosis. Other factors contributed to the disturbing behavior that escalated from occasional occurrences to everyday chaos. But I’ve always wondered what my sister would have been like—what she’d be like today—if she didn’t have that cancerous mass festering inside her brain. (Doctors attempted to remove the tumor soon after her diagnosis. During surgery they decided for her quality of life, they would only remove half.)

I told you before that I didn’t want to write this post. I seldom talk about this topic because it consumed so much of my life and waking thoughts growing up. I decided to write about it because I know I’m not alone. Not only do I have other family members who know what it’s like, I realize there are thousands of people dealing with the unique tragedy of losing someone alive. They’re there, but trapped somehow inside themselves. Whether due to addiction, mental illness, an accident, Alzheimer’s, or other brain anomalies, your loved one isn’t who you used to know and you’ve had to adjust to the new normal of who they are now. I cried hard at the hopeful part in Brain on Fire when Susannah makes strides toward recovery. I loved that for her, but hurt for those I know who won’t walk that same path.

People love to tell me it’s a miracle that my sister, who was only given six months to ten years at most at the time of her diagnosis, has lived into her late 40s. Yes, it is. It’s a complicated miracle. Because in many ways she’s still trapped. And she hardly resembles that fiery teen I put on a pedestal all those years ago.

But I love her fiercely. And no one said loving is always easy.  

Monday, June 18, 2018

Fighting Dispiritedness

We’ve begun the initial stages of settling in to our new home. Painting. Arranging furniture. Recycling boxes. While I feel incredibly peaceful in this house, the weight of the world feels heavy lately. I’m disgusted and dispirited by irresponsible and heartbreaking politics, callous impulsivity, and a real lack of empathy and understanding in our culture. Often when I encounter this type of reaction I retreat. I shrink inside myself, tempting to block out the world—to insulate as a form of protection.

However, in time I’ve learned there are better ways for me to rise above moments of deep disappointment with the world we live in.

Eight Ways I Fight Dispiritedness

Initiate Meaningful Conversation
Not everyone agrees with me. Some may think the world is just fine as it is, some may even say it’s improving. Those are the folks I try to initiate conversations with. I don’t go in with a Debbie Downer approach, but I do believe the most successful road toward change is establishing a broad understanding of the path we’re on, this includes the people we’re walking beside. I have learned to have healthy, robust exchanges. We can disagree, that’s fine. But I crave for people to think. What gets me down more than anything is when people blindly back someone or a decision without garnering understanding first.

Get Outside
I know my triggers and when the world presses in with great intensity and I find myself unshakably sad, the outdoors calls. It’s restorative for me. I’m exceedingly grateful we moved to a place with a calming view and nearby outdoor playgrounds for me—the mountains, the beach, etc.

Seek to Understand
My husband often says, “But the world has always been a mess.” True. But as someone living here and now, I’m driven to understand what it is about our culture that’s pervasively destructive. What’s destroying us? I step back and take time to figure out specifically what it is that’s angering me so much, then I try really hard to dissect the situation, viewing it from unique perspectives.

Speak Up
As I feel led, I’ll reach out to those in a position of power, those who could incite change. I’ll become more vocal. I’ll root around for my voice, then use it.

It’s what I do. For over twenty years the best way for me to sort through anything has been to get it down on paper. It’s freeing somehow.

Check in with My Kids
I have a major responsibility and I don’t take it lightly. I’m raising a new generation of thinkers. Of voters. Of doers. Of changers. I dialogue with my kids and share with them, as appropriate, the things that rattle me about this current climate. I’m curious, does it rattle them? Will she be the one to put an end to this or to create radical change?

I Laugh
It’s so basic, but it’s medicinal for me. Truly. It changes how my brain works. My youngest showed me this video not long ago of a little girl who’s renamed ice cream. I crack up every time I watch. I think it’s healing me somehow—laughter and this video. Maybe it’s the innocence of it all.

Hold Strong to Hope
I don’t always feel my faith. I wrestle more than I care to admit. But neither of those confessed truths alter the reality of hope. It exists. It’s steadfast. And trustworthy whether I cling to it or not. We have a God so billowing with love he won’t ever quit on us even as we destroy all he’s given us.

It can get rough out there, people. I strongly encourage you to figure out what will help you combat the dispiritedness. Because you’re necessary here. We need you. Change awaits.

Taking Time

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