Community Support After Brain Injury: Lethan Part Seven
There is a term often used to describe one of the key variables in outcome after brain injury: community support after brain injury. Recovery from TBI is not a finite milepost, not achieved by passing neuropsychological tests. Recovery is measured by the degree of return to independent function, in the real world – as I like to call it: the laboratory of life. The real world is the community and the community support after brain injury allowing the survivor to walk, communicate and interact with that community is not only the best measure, but the method to achieve growth. If the highest priority is return to community, the best success for such goal is to maximize community support after brain injury and integration.
For Lethan, the magic of that element was Bloomsburg. The people were not only there with community support after brain injury for his family when he was in deep coma, but also for him throughout his rehab. While at 17 Lethan was ready to get out Bloomsburg, for he and his family it was fortunate he did not. For his parents:
And like I said before, Bloomsburg is a small town and in a small town it goes that once one person knows something, everybody knows something and so soon there begin to appear at the hospital wanting to show love and support. People just trying to give offers of help to my parents and my parents they were gratefully accepting all these offers of help and they were on the phone with insurance companies and they were running back and forth between the hospital and my sister at home and work.
Lethan tells the story of the coma vigil in the Chapel by the community support after brain injury at the hospital in “Who Am I, Again?”:
And still more offers of help continued to arrive at the hospital and my parents they were grateful for all this love. They were thankful. They were honored. They were exhausted and they didn’t want to turn anyone away but they didn’t want to deal with all of the people all of the time. So they got the idea that maybe they could have some sort of prayer service, some event where they could bring the entire community together and everyone could show their love and support and give offers of help and then they could go away. And so my parents, they spoke to the hospital and were given use of the hospital chapel for one evening and they did not make a big deal about this at all.
They just told a few people at church, they thought word would spread. And the evening of the service came, and the chapel was filled. Extra chairs were brought in. People were standing in the back. And one though everyone who came in found a seat or standing a spot somewhere, no one really knew what to do.
You see, my parents had decided to run this service in the Quaker style of worship; that’s where the entire congregation comes together to sit in silence. To pray and meditate and be with one another and then when someone feels moved by the light they may stand and share a thought, a prayer, a memory, even a joke; whatever feels appropriate at that time. My parents thought that this would be a good all-inclusive non-denominational style of worship to include the community and they were right in theory. Unfortunately, despite the fact that we were living in the Quaker State, the only thing the majority of the people present actually knew about Quakers was they had something to do with oats and no one really knew what to do.
And the service began awkwardly; a little shuffling, a little bit of whispering in the back there. And no one said anything for 35 minutes. My parents were just starting to think that maybe they had made a mistake and maybe they should end the service early when Susan, a friend I went to elementary school with, suddenly felt moved move by the light.
And she stood and she shared a memory and no one remembers what this memory actually was but what they do remember is that her memory opened up a floodgate and stories began to pour from the congregation. Stories about laughing together, about working together, about parties, about dates. Stories about that time we all got naked and went streaking downtown. They told a few stories I had really hoped my parents would never hear.
But people began to laugh, began to smile and a transformation from a service of sorrows to a celebration of love, of life and of community.
And the next morning I woke from my coma.
That community support after brain injury was evident when he enjoyed the Y2K New Year’s Eve celebration, two months after his accident.
It was December 23 and I was going to be home for Christmas. What’s more, I was returning home for New Years Eve and this was the big one. Into the year 2000 and assuming we weren’t all killed by the Y2K bug, I was returning home for the mother of all New Years Eve celebrations. See, Bloomsburg was going all out for the First Night celebration. This sort of citywide spectacle to bring in the new year and there was going to be live music downtown and games and the Rotary Club was going to dance the polka and there was going to be lots of fried food and it was going to be my first trip downtown and everyone was there!
And I remember we walked around with my parents but we saw my friend and my parents’ friend and people I had never met before but who had heard about me through their friends and I thanked each and every one of them for their love and support and told them that without their love and support I would not be where I am today and then they would usually laugh.
I asked Lethan as to what might happen without that kind of “everybody up in your business” community support after brain injury around him:
I think the main thing – the most important thing to do is to find that support. I know it’s, it’s, it’s dangerous to put yourself out there as – and say this is who I am, I had a brain injury I need some help, but I think the most important thing is to allow the TBI support group to help.
I think TBI support groups, going to the hospital, going to church, not so much for the religious help which is neither a negative or positive here. The important thing is finding the community through churches because I know churches or synagogues or any, any established sort of place. Or even just going– if you’re able to – to a weekly pick-up basketball game or something like that. The main thing is to find people who can support you as you are now and who recognize that you have changed.
Not to take away from the positive side of your, of your theme and your story but where is the tragedy the other stories that you’ve heard? What is the real loss without community support after brain injury?
I think a lot of the loss what I’ve found comes from how much – well, I guess, I guess the thing about the biggest loss would probably be in the people I’ve seen and some people I’ve interviewed have all kind of been abandoned by their community.
It’s because parents don’t know how to help their son or daughter anymore and it’s not that they don’t love them but they just don’t know what to do and so they put the child in a, in a extended care facility or because their friends don’t. Like my friend Ryan – we’ve, we’ve – I’ve been very fortunate we’ve managed to stay very good friends but he tells me that a lot of people who I didn’t manage to stay friends with they just didn’t know how to interact with me.
I think that’s the biggest tragedy is because there is not – there is so little awareness of brain injury, so little understanding about it in the general population, people don’t – well, in any population, even the medical population, any population there’s so little understanding, people aren’t sure how to deal with it so it’s kind of one of those out of sight out of mind things is kind of the thought process I think goes through a lot of people’s heads or not, not consciously – they’re not trying to be, they’re not trying to be idiots but – or dicks but they’re just trying to be – trying to live and trying to do their own thing.
The backbone of the http://tbivoices.com project has been Brain Injury Support Groups. I am available to come to play “Who Am I, Again?” and discuss the project with any support group, anywhere. I have brought this presentation to about 15 support groups already and hope to get that number above 50 in the next couple of years. The week I write this, I attended support groups in Deerfield Beach and New Port Richey, Florida. To contact us about such a presentation at your support group email me at g@gordonjohnson.com
If you are not part of a support group and do not have the community support after brain injury, then you really should join. Last night, there was a dad and a sister of a severely brain injured survivor, attending the New Port Richey group. It was clear that the interaction with the other caregivers and survivors renewed their hope, reenergized their commitment. Yet, they were unable to convince the survivor (the brother/son) that he too needed that connection. Denial is one of the great enemies of recovery, and it is my hope that if I ever get invited back to New Port Richey, that brother and son of my new friends, will be at the meeting as well.
Next in Part Eight – Heel Toe, Heel Toe
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