What do you call someone with a brain injury?
A survivor? Patient? Consumer? Most of the time we are called “a person living with brain injury.” Well, I don’t buy it. Clearly, if you have had a brain injury you are “living with brain injury,” but so are your family, friends, and caregivers. Everyone involved is struggling to keep their heads above water, and we all need to help each other.
But first, we need to learn how to communicate. It’s a tough nut to crack.
Often, we assume that those closest to us understand what we mean, not just what we say. Words matter. But communication also includes body language, innuendo, tone of voice, and facial expressions. Put it all together, and even a simple conversation can be hard. But no conversation is simple when you’re living with brain injury.
It’s complicated when one of us has trouble concentrating, keeping their cool, and processing information. And the other one is exhausted, on an emotional roller coaster, and constantly on edge.
We must learn to talk and listen to each other with clarity, patience, and respect. What works best for me is to take my pulse and make sure I am in a calm, thinking frame of mind. Only then, do I open my mouth. (I admit, that’s the strategy I should use, but don’t always remember to). Words matter, but how you say something is as important as what you’re saying.
To start, take a slow breath in and out. Relax. Then wait – delay – gather your thoughts. Once your head is clear, start the conversation. Remember to keep breathing and stay calm. Don’t plan to cover too much ground, discuss one thing at a time, and give each other a chance to absorb and consider what was said. And check in to be sure you were clear. Above all, be quiet and listen.
On the receiving end, be sure you fully understand what’s being said. You may think you do, but it’s worth verifying, anyway. Take your time; there’s no rush. What you heard might not be what was meant, so rephrase it before 
responding, or simply ask for it to be repeated. Then delay, gather your thoughts, and only then open your mouth.
Stay calm. Be patient. Listen.
Words matter.
A Brain Injury Life 
Laurie, again, you, and your instructions, are so right. With a brain injury, mild invisible to severe disability, it is sometimes difficult to consistently respond to ordinary conversation. Close family, friends and trained professionals are aware of how cognitive disabilities reveal themselves. However, “the general public’ does not seem to have this awareness.
Sometimes, with “the general public’ it seems impossible to detect the intention and meanings of common innuendo, body language, pregnant pauses, and such.
Prior to a brain injury, we had no problems with our ability to understand and communicate. Now, sometimes I’m oblivious to implied underlying meaning or intentions. Now, when I try to focus on what communications I think I’m missing, the energy it takes exhausts me. I loose my ability to stay focused, unable to continue to work at finding the concern.
We, the brain injured, are very, very fortunate to have families, friends, professionals and communities. They are willing to make that extra effort to assure us that we understood what they and we have communicated.
Unfortunately, “the general public” is overwhelmed with too many distractions and concerns. They seem too busy to actually emphasized and practice the inclusion of many, smaller communities, including the brain injured community.
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