Stories of isolation and Community Itegration
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
I’m not saying we don’t need doctors, we don’t, we need lawyers, we need doctors but at a certain point the medical model is out the door. It’s a social thing, either it’s within ourselves or within others and I hated the guilt that I felt and I hated that I was always trying to be who I was.
Gail’s one of the teachers here.” And who is she teaching?: “She teaches a number of things, but we do a brain injury curriculum. It’s a required curriculum they do. Our focus really is for folks you want to go to work, because they have some incredible programs. I’ll get into that, but they, these are folks that want to be able to work, that haven’t been able to work, but folks that want to get better education to get better employment. It’s really focused, this aspect of it, to get people working. But we also have some students here that want to be more involved in community too, so we do a lot of community things. But it’s just, for people who have been isolated, and want to do something with their lives. There’s no lack of people (who need that.)”
Is there any other major category of things that you’ve done in your advocacy that we haven’t chatted about?: “Let’s see – we did a food drive. It was little thing but for folks with disabilities to get 12 tons of food, that’s pretty impressive. We’re going to do our major fund raiser this year, nationwide for, and again, the main company don’t get anything. A “Walk with Thought.” You’ve heard of Walk For Thought, right? Well, we know what we’re thinking, we’re walking “with” it. And it is to let our communities just kind of know â€“ support for groups rather than some of the organizations some states have (referring to the brain injury associations) because some states just waste the money. It doesn’t actually go to help anyone, and, so we’re empowering groups to do their own fundraising and create a little money, because it don’t take a lot of money to run a group. Just, a place, and refreshments, and you’d be surprised if you have food how many people come.”
What can you say to the person who’s now beginning to deal with this totally different type of depression and life changes – both, in terms of the life they’re living and the brain that they have to live it with, to bring them back from the abyss.: “You need to reach out and find another survivor. I didn’t stop the feelings until I started understanding that I wasn’t alone. You just feel so alone, you feel like you’re the only one, and there is more of us than they think. Mount Sinai believes there’s 3 million. CDC says 5.6 million right now. There are so many of us, just reach out. Call. We’ve got folks in every state, every city almost. We’ll help you start a support group. That support group is what stops this.”
What would you like to say to the people who are friends of someone with a brain injury, in terms of how to give that person more, to be a better friend?: “Get back in their life and reassure them that you are a friend. Your injured friend might be contacting you for help in some manner, such as, maybe just to come share community with them. Take them to a movie, maybe you can go out to eat, but just share your interpersonal self with your injured friend. Don’t, don’t step away and just, Oh, he’ll get better. He doesn’t need me. He’s got his family. Because we all need somebody at some time.”
With the loss of being cool, comes the loss of confidence in your behavior, even just after you have done something. Disinhibition is often not the total loss of knowing what is cool, it is the loss of ability to stop the behavior, for example â€“ stop the words, before they come out. One of the worst parts of disinhibition is the realization, almost immediately, that you did it again. What makes brilliant humor is in the timing, the nuance. Lethan describes that loss of confidence in his sense of timing.: “Now, like we said before, Bloomsburg, it is a small town so that means that everybody’s all up in everybody’s business and so everyone had heard at least something about my accident and my miracle recovery and so as I finished my cross, the audience began to applaud for me. Matter of fact, they stood up. I got a standing ovation from the community?! When I saw this my theatrical instincts, they took control, I turned, faced full front, bowed deep at the waist and they laughed at me. And I remember thinking, I made it. Yippee!’ And I wasn’t proud of myself. Why should I be? The second half of my senior year had been a joke. It must have been pretty funny too. The audience had laughed.
Nancy’s mom explains the difficulties she had with all the attention she got: “At that time noise levels, too much going on was like over stimulating for her and she almost got to the point where that was a shut down time. She would act very fatigued. She was having to see people and she didn’t, I don’t think she recognized a lot of people. Or remembered them I should say. So that was uncomfortable for her.”
Does she remember who she was? I mean, now it’s been nine years, but for – going back to May and June of, of her fourth- grade year, does she remember at that time how different her life was? What her life was like? What does she remember?: “I don’t think that that was even on her mind. I don’t think she could put that into terms. Embracing ” we went to ““ there are a couple of fourth-grade activities that we’re going on. One related to a sleepover at the school and it’s in the middle of winter when there’s not much going on anywhere else, and so the kids stay over. They make T-shirts. They put on a play. They do all sorts of things. Well, she’s invited there for the dinner and, , they also have, like I said, making T-shirts and things but the , when she walked in the room the noise level was so high for her that that was disturbing; put her on edge, so that was a stressor. And they all ran up to her and hugged her and the emotion in her face wasn’t “oh I’m so happy to be here”, “oh this is too cool”. It was absolute terror.”