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Living With Brain Injury, Part 1: Accepting the Unacceptable
11/21/2013   Reported By: Patty B. Wight

Brain injuries are getting more and more attention in the news, thanks in part to the spotlight on concussions in sports, particularly football. The personal stories that emerge from this coverage are often tragic. But there are people who are finding ways to live with their brain injuries. Over the next two days, we're bringing you profiles of two such people. First, producer Patty Wight introduces us to Carole Starr from Cape Elizabeth, who was injured 14 years ago in a car accident.

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Carole Starr (right), in her own words:

"I'm going to go to the grocery store this afternoon. The grocery store has been the site of some of my most interesting meltdowns."

"I have a list on my computer. It is an itemized list by aisle of my grocery store, and I print it off every week, and as I run out of things, I just circle it. So then when I go to the grocery store, I don't have to hunt up and down the aisles for things because it tires my brain."

"My name is Carole Starr, and I am 46 years old."

"My brain injury was 14 years ago in July of 1999, and I was on my way from one teaching job to another teaching job, when I was broadsided on the driver's side by somebody going about 50 miles an hour."

"They let me go from the emergency room with a diagnosis of severe whiplash, and I was bruised from head to toe, particularly on my left side, where I got hit."

"And I was so, so tired. Tired beyond the physical injury. It's hard to explain the fatiuge. I couldn't think."

"When I tried to go back to teaching, it was awful. Just awful. I used to teach communication skills, and I had taught these things many, many times before, and I couldn't follow my own lesson plan."

"I would get confused, as to - what are we doing, and why are we doing this? I would often break the class into small groups to do things - I'd just leave them there, because I couldn't figure out quite what to do next."

"I'm not really in charge of my life anymore. My brain is. I've named her. I call her Brain Hilda, because it does seem like there is this other person in me who is a diva who gets what she wants. And I have to work with her. We have a partnership going on, that if I try and do more than my brain can do, I'm going to pay for it."

"The produce section has historically been the most difficult part of my grocery shopping, because there's a lot of decision making to do here. And in early days, this is where I would have tremendous difficulties. I would literally stand right over there by the apples with one apple in each hand, going, I don't know which one to buy. I mean, I have a master's degree, and I was bamboozled by apples."

"Even now, even though decision making is easier, as I look at the apples, I think - oh god, I don't know which ones to buy."

"I limit the amount of time that I do things. I do my most challenging activities in the morning. That's when my cognitive energy is the clearest."

"This is where it gets confusing for me. I am confused right now, because I can't find it. I'm looking for cocount oil, something that's new for me. I've never bought this before."

"I take naps everyday, generally twice a day - once after lunch, and then again before supper. And those are naps are pretty much non-negotiable for me."

"I honestly don't know what to do - do you see coconut oil? You do?"

"People sometimes say to me, 'I wish I could take a nap every day.' And depending on what state my brain is in, I'll say, 'No, you really don't.' You might wish for the opportunity to take a nap every day, but the reality is, is if there's something that's going on that's all day, I simply can't do it. It's too much for me. There are so many things that I miss because - Oh, that's an all-day activity. Well, I can't do that unless there's somewhere that I can disappear for a couple of hours to rest. That's just the reality of it."

"Well, we are having lots of conundrums in the grocery store today. They are out of the kind of bar that I usually buy. I usually get the sweet and salty, but I usually get the smaller size, which are usually up here somewhere."

"Basically it's taken me a decade to go from consistently having two hours of mental energy a day, to now having about four. And in some ways, that's depressing - wow, a decade for two hours. But then, in other ways, the decade that's helped to get that extra two hours means I can run Voices."

"I co-founded Brain Injury Voices in 2010, and I co-facilitate that. And we are a group of 10 brain injury survivors, and we're ready to use our knowledge and experience to help others who are earlier on in their prcoess of brain injury. So we educate others about brain injury, we talk to a lot of medical professionals."

"And the last thing on the list - frozen fruit."

"I like that feeling of having a career again, because I really thought that that was something that was lost for me. But it turns out that I could redefine what career meant. Career doesn't have to mean a 40-hour-a week job. For me, maybe it's five hours a week. But the feeling that I get inside is the same as if I could do 40 hours."

"No matter how much I want to just make it go away, that's just not going to happen. If I want to live a good life, I need to use strategies. I need to accept that I have to do things differently than I used to them. And different isn't bad, it's just different. But that's a big adjustment."

"Honestly, being able to make that adjustment - letting go who I was and saying, 'O.K., that part of my life is done. But that doesn't mean my life is over - it's just changed. And to look forward to a new life - I mean, I didn't think I could make that leap, but I did. And I really count that as one of my best accomplishments."

Learn more about Brain Injury Voices.

Photo:  Patty Wight

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