Colleen discusses living with aphasia with her husband, Greg. Greg has aphasia from a traumatic brain injury while parachuting from a military airplane. Her advice is to never give up, and to always search for better answers.
When I first heard the word “aphasia” I had no idea, my mind was going a thousand miles an hour. I had no idea what it was, what it meant, and then it hit me what it meant to me. The A in aphasia meant ‘anger”, because I didn’t understand why this had to happen.
The “P” was for “puzzled”, because I didn’t understand how the brain processed language.
“H” was for ‘helpless’, because you have no idea how to help your loved one understand why they can’t say a simple word they used to say.
“A” was for ‘answers’ that we were constantly seeking to try to help him understand.
“S” was for “silent”, because our world became silent.
“I” was “incredible” because he is so brave for everything he has gone through. It’s amazing to watch the progress, the struggles, the ups and downs.
“A” was for “awesome” because when you finally meet someone who understands you and your loved one’s world, there’s nothing the can describe it. It’s awesome.
So did you want to talk a little about what happened with his stroke or your rehab experience?
We’re not sure what happened. We know that his parachute opened and somewhere between the time after the chute deployed, he passed out, so we’re not positive what actually caused the accident. We were in rehab for 11 months, we finally got home in May, 2013. We spent three months at home and then we came to the Aphasia Program.
How has aphasia affected your life?
Your whole life’s been turned upside down and as a caregiver, all of the sudden I was faced with becoming the mechanic, the banker, the decision-maker, the maintenance person, the entertainer. And no matter how sad I was, I always had to get up every day and find the strength to push through another day because you become your loved one’s voice in a cruel world with aphasia.
What changes have you had to make as a family?
Of course, our way of communicating it’s been a very, I shouldn’t say a difficult transition, but you no longer have your old world. You live a new normal life and a lot of adjustments as far as your activities and socialization. Basically the way you live your whole life now.
Do you have any advice for other caregivers or families with aphasia?
One of the biggest ones that I can express to other people, especially family members, is to be supportive supportive supportive, no matter what the family dynamics are. And never give up and keep searching for the answers. And no matter what people tell you there is help out there and your loved one will continue to heal in time. Greg and I have always lived by this motto since the day of the accident. We take one day at a time and we are going to make lemonade out of this basket of lemons and that’s basically what we’ve done.