Editor’s note: Writer and stroke survivor, Isaac Peterson, offers some straightforward and valuable advice for family members, friends and caregivers of brain injury survivors. Thank you, Isaac for your wisdom and words. KT)
Before I received the gift of a traumatic brain injury (TBI), I really didn’t know what one was. Sure, I was familiar with the term, but after my stroke, I was surprised to learn that I had one. The constant dizziness, lack of balance, fatigue, the weakness in my limbs, alternating bouts of insomnia and super drowsiness, and other things; what was that about?
Since it looked like my life had turned upside down and sideways, I figured I’d better learn what had really happened and what I was in for in the immediate future.
After that it took me a while to realize that the people around me were still where I had been before my TBI and didn’t really understand what a TBI is and what it does to survivors. I also came to understand that as well-meaning as they might be, they would never fully understand until they had my hands on experience.
Family, friends, caregivers: where could they get the knowledge and understanding to help a TBI survivor cope with their new reality, and learn to cope themselves?
I desperately wanted the people in my life to know and understand what was going on with me.
I’ve seen websites that offer advice, but most seem to come down to this: be patient. The sites I’d seen didn’t offer much in the way of explaining what others need to know that will actually help others be patient. Patience is good; I know we can be a real handful at times. It must be pretty hard sometimes not to feel angry or frustrated.
Now it’s my turn to try to explain it.