Realistic Hope after brain injury

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Realistic Hope. There’s a phrase I can really get behind! A lot of people say we have to stay positive in order to get better. People suggest we purge negative people from our lives so we can focus on healing, wellness, forward progress. Hmm. That’s a little too strict and self-centered for me. Plus, sometimes the demand to say positive things means you’re not encouraged to be honest. And sometimes those people who are appearing negative have a pretty valid reason to feel that way. Rather than shun them, we could learn from them what’s not working and how we can provide support and change. You know, be less defensive and more inclusive.

After all, if we silence what we think is negativity or push away people who appear negative, then what? Is that supposed to make them positive all the sudden? Ouch.

Why isn’t everyone positive after a brain injury? Their life changed. They’re not able to do the things they want to or used to be able to (or they can, but it’s so amazingly hard and exhausting). People don’t understand what’s going on because they usually look pretty much the same on the outside. There’s discrimination. People fear you, assume you’ll be dumb or aggressive, can’t hold a job, can’t contribute. Pain. Sensitivity to noise and light and movement. Exhaustion. Poverty. Confusion. Inability to fill out the applications to receive the benefits you wish you didn’t need in the first place. There are so many more.

So that’s why I like being realistic! It allows the possibility that everyone has a different lived experience. Different levels of support, access to what they want and need, understanding of what’s going on, motivation, ability, being part of other marginalized communities. And difference is a fine, fine thing. Even with difference, we can still work toward equity and respect. But to have true equity and respect, we have to start out by being realistic about all the challenges the environment and society throw at a person with a brain injury.

Two green hands are cupped together. Inside them stand two red adults and two red children, holding hands. A blue heart is above them, and an orange sun shines. Realistic Hope is written next to the image.

[Image description: Two green hands are cupped together. Inside them stand two red children holding hands. Two red adults stand, forming a house above the children. A blue heart is above them, and an orange sun shines. Realistic Hope is written next to the image.]

Pop on over to Survivor Mark Palmer has put together a beautiful website and project, collecting stories and experiences from brain injury survivors and their families. He advocates modifying brain injury treatment to include much more wisdom of those who have “been there, done that.” That will help us all address ourselves, each other, our communities and surroundings, not just demand that the person with brain injury rehab themselves up to normal. And here’s one of my most favoritest things that I think about a lot. Palmer suggests we “[a]sk the funding sources for TBI research to broaden their support by also funding research on how to live a fulfilling life that has been touched by a brain injury.”

Yes! We’re not just objects of behavioral study, blobs to be looked at in scanning machines. We are people!

Visit the website. If you’re in the brain injury community, set up a profile and start networking with others. Read the stories. And see how else you can get involved at whatever level and in whatever way to create the hope and change you’re looking for.

Hope is invaluable. But it doesn’t come for everyone just from having a lot of pluck and a happy demeanor. To have real hope is to feel valued and have access, respect and inclusion.