I have had a very emotional afternoon reading through the blogs questions etc on this site.
The emotional roller coaster has taken me through all the emotions that I strive daily to hide. But I have never laugh and cried so hard at the same time as I have today. I just had to post the site to my facebook....then when I had written my comment..and posted it i reread the Post....it starts like this..Headway community ,health unlocked.A community that connects people,volunteers and professionals to help learn share and ....AND AND....up the angry me and starts screaming in my head and not wishing to engage brain before opening the mouth...Which one am I...? I'm not people anymore,I'm not a volunteer either ,Its been a long time now since I was looked upon as a professional,since my brain surgery to be exact....Could we include 'The brain injury survivors' somewhere between people and volunteers...After all is said and done., we are the professionals.rant over soap box put away....Thank you Headway I have had an amazing afternoon with Health unlocked.
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Drusilla
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How do i best communicate my perspective on this centrally important issue??
Here goes:
i'm a healthcare professional, but i'm a person first
you have also had various roles including being a volunteer, a professional, a brain injury survivor etc, but you're a person first. you always have been that. the injury tends to make people lose sight of that fact, and people tend to put themselves down when they feel they are a lesser person.
i see one of our important life tasks as involving looking at our various experiences and roles and wrapping them up in a life narrative. it depends on the way you tell the story. you can find ways of seeing it as rich, interesting and unique, but after a brain injury people tend to feel their story is unattractive. the pain of living with the change is responsible, but once people find a constructive way of moving forward their life narrative tends to become more upbeat.
I havent lost sight of who I am....I am the new and improved version of the old me....and I love who I have become....I am actually very taken back by your comments as I have been by a lot of professionals.....It doesnt matter how we tell our story there is nothing attractive about it...Its what we do and how we cope with it afterwards thats matters.I find your message quite patronising . The pain is mine,the depression is mine , I own them and I have earned them. I am happy in my own skin and I feel proud to belong to such an elite group of incredible people...all of whom are brain injury professionals...survivors of something that is scary beyond belief ....Everyday there is something that drags me back screaming and kicking to a place I try so hard not to think about....Be it, forgetting that I something in the oven...forgetting that I was running a bath ,running for cover at the sound of a crisp packet or sobbing in a corner because i just dont have the energy to play with my Grandchildren.....But on the upside , Well thats another story and one I dont wish to bore you with ...I think you missed the point completely. Welcome to my world.
Since we launched the Headway community a couple of weeks ago we've been working with HealthUnlocked to customise it to be relevant to people with a brain injury. You make a very good point about that particular wording, and we'll see if we can get that changed. Please accept our apologies for any anger this has caused.
It's so good to hear your positive comments about the site - that really is what we hoped it would provide when we decided to go ahead with this project, and it's fantastic to see how quickly people have adopted it.
Once again thank you for your feedback, it is a big help especially in these early stages.
Bless Headway and thank you for another lifeline.....I was 18 months into my recovery before I was introduced to Headway..My first day I spent sat in the garden at headway Aylesbury in tears ..tears that I just could not stop...headway was the first place I had felt safe since having brain surgery....I felt loved ,safe and for the first time able to be me.....It was an incredible feeling and one that will stay with me for the rest off my life.....But that was only to be on a Monday and a Wednesday...Having Headway out here, in the scary world is a real blessing......Thank you.
In Rod's defence I think I do understand what he's trying to say. If we allow our head injuries to define us, we aren't focusing on the other things that we think make us better than the people we were (I'm touchy feely now, but I hated cuddles before, and the new me can't understand that). But what he is suggesting isn't straightforward at all, I'm not even sure it is possible. TBI's aren't one size fits all, what is possible for one survivor may be totally beyond another.
I'm not sure I agree with the narrative bit (presuming he means it literally)...I don't consider myself particularly articulate, and I'm in the lucky category of survivors. Any narrative also requires a degree of self-awareness, which many survivors lack...and telling someone whose executive function, insight, etc is severely impaired to just change the narrative seems to me to be a bit like telling a man who's lost both legs to just get up and walk. It's not there any more, that's what a brain injury is, there is no cure, and you can't just create new neural pathways for many of those things...procedures is one thing, abstract thinking, at least for me, doesn't come easily, especially when I'm engaged in something else.
Speaking educationally to the healthcare professional in Rod's person, it's not possible to treat a head injury survivor the same way as you would anyone else (or as mentioned before, you can't actually treat one the same way you would another). The CBT-ist I saw didn't seem to understand that even though he saw loads of TBI survivors. Their fundamental ways of thinking have been changed and can't be reset to the way they were before (which probably has something to do with the need to re-forge neural pathways in the brain).
People don't need fixing, they need acceptance. Was is Carl Rogers (name might be wrong but he was one of the first proponents of person-centred counselling) who said "When I accept myself just the way I am, then I can change"? We may change over time, but it will always be when we are ready, and in the meantime we need to accept ourselves, and others.
Hopefully I haven't offended anyone, but maybe I've offended everyone...
Oh I just re-read that and realised the abstract thinking thing makes no sense. I'm not going to try to re-articulate, I only get one shot at clarity...that's my brain injury for ya...
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