Brain injury raises a lot of questions. Some people aren’t comfortable asking questions. Other people are very comfortable knowing what they think they know have don’t see a need to ask questions (St. Michael defend us!).

There are many lists and guides out there the describe the symptoms of brain injury. There are not many that explore the weirdness of brain injury and what that does to family and friends or even bosses and co-workers. Educate yourself about the facts of brain injury, lest you be the equivalent of the person in 1853 not believing a blind man can use a stick to “see” and ignorantly proclaiming “They don’t need a stick, clearly they can see, even in the dark!”

Truth about brain injury

• Most brain injuries are invisible. There is no cast or visible scar. The injury is to the neurons inside the skull. It is real and because the brain effects everything about us injury to it can effect anything about us.
• Every brain injury is different.
• From the outside looking in you might wonder how a brain injured person can do x and y, but not z. Ask questions, but without making presumptions. Guaranteed that the brain injured person has been told they are making this all up, and may even wonder it themselves, perhaps years later. Please, be humble rather than ignorant and arrogant.
• Brain injury is weird. Different days can have different capacities because of varying brain energy. Things you think would be simple for you are not for the brain injured person, for reasons they may or may not understand but definitely experience.
• Brain budgeting. People with healthy brain get thousands of dollars a day in brain energy. Brain injured people, in contrast, get a dime a day in brain energy, and have to manage their day so they don’t go into debt and need days, weeks, or months to recover. Non brain injured people get so much brain energy a day they don’t have to budget it and, if they do (because stress in life makes everything cost more), it is a Park Avenue budget rather than a refugee camp budget. Thus, if a brain injured person avoids certain things it may not be they can’t do it, but that doing it costs them fifty cents and they’d rather spend five days of brain energy doing things that don’t cost them so much.
• Presume they are telling you the truth. Reference everything above. Can brain injury be faked or exaggerated? Possibly. But brain scans can’t be. The challenge of having days on days of not being able to venture outside despite loving to wouldn’t be. Presume they are telling you the truth and ask them how you can help them enter life as fully as possible.
• There is a lot we don’t know about brain injury, and the truth is each survivor and/or their caregiver is the best expert on their brain injury. Listen to them. Ask questions, especially if things don’t make sense to you. Presume they are doing their best to explain what is going on and that they are genuine and truthful in what they can and can’t do when (again, this can vary by day and even minute).

Here’s another post with a similar approach.

#advocacy #caregiving