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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



5 things to remember when meeting a brain injury survivor

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If you asked the 5 year old me what I was going to be when I grew up, I definitely wouldn’t have described my current situation. Granted, blogging didn’t exist back then, but that’s not the only reason. I always saw myself working with people. The first career I named was an air hostess. (I know we say cabin crew these days, but we didn’t back then.) And my reason was really cute. It wasn’t because I wanted a glamorous lifestyle. I specifically said “I want to be an air hostess because they are always really nice to old people.” Isn’t that the cutest reason you have ever heard? And I wasn’t trying to score brownie points, that’s just what I thought was right. So fast forward nearly thirty years, and where am I now? Sat on my own in front of a computer at home, getting on with my life post brain injury.

But I’m not complaining, I just never thought it would happen.

My parents had their own business, so when I was growing up they were able to be at home more than others parents. I thought that was great, and liked the flexibility it allowed. But as I didn’t think I could ever be self employed, it was a lifestyle I couldn’t aim for.

So the positive in times post brain injury, is it’s opened up a door that I would have been too frightened to try before. And whilst I miss actually seeing people, I think my inner 5 year old would approve. Because I believe I’m being helpful and nice to lots of people, old and young.

I just wish society would accept that going out to work, isn’t the only way you can make a contribution. When I meet new people you always have to go through “what do you do?” The vacant and pitiful looks I get when I explain my current situation says it all. One guy asked “What, and people actually read your blog?” He was surprised that anyone would waste their precious time reading about what happens in a survivor’s life.

So here’s my tips to consider when you meet someone post brain injury:

  1. “Don’t you want to go back to what you were doing before?” – I hate this question so much, and yet everyone asks it. If the answer is “No I really hated it”, that is sad in itself. But the majority of the time most of us would go back, but we can’t. So all this question serves to do, is make the survivor feel like they have to justify themselves.
  2. “Isn’t there tablets you could take to help with that?” – Oh I never thought of that? Maybe I should ask the doctor. Give me a break! I didn’t study Neurology myself, so having to explain to an idiot that it doesn’t always work like that is such a chore.
  3. “But you’re alright now aren’t you.” – Yes I’m brilliant. Apart from the debilitating fatigue, and confusion caused by brain fog. Oh and then there’s the migraines where I want to rip my own head off, but otherwise I’m first class!
  4. “But you just have to keep pushing and you’ll get there.” – Oh is that right? Wait we need to see the head of Neurology and give them this break through. There’s hundreds of thousands of people post brain injury who need to know this! I know this is supposed to be supportive, but believe me, it’s not.
  5. When I say “I’m fine”, sometimes it means I don’t want to talk about it. I think we all know the description of “being fine” often means anything but. However, it gets tiring talking about it constantly, so it doesn’t automatically mean you should probe harder. Let me come to you, just make it clear you are there when I’m ready.

The moral of this story:

Yes suffering a brain injury is terrible, and I wouldn’t wish it on anyone. But don’t judge the effects or how the person chooses the deal with their life. It doesn’t have to be the end of the world. As one door closes, another opens, but you don’t have to walk through it if you don’t want to. We all have the right to make decisions about how we live our lives. And whilst others might make other choices, there is no right or wrong as long as we aren’t hurting others.

My life post brain injury is pretty good. But there are somethings that frustrate me about how people converse with survivors. Here's my do's and don'ts...
My life post brain injury is pretty good. But there are somethings that frustrate me about how people converse with survivors. Here's my do's and don'ts....

What positive examples from your life post brain injury could you give? How can we give hope to those who this has only recently happened too?


21 replies on “5 things to remember when meeting a brain injury survivor”

Different is not a problem. So pleased to hear you have been able to continue with your business. Well done, that’s great news.

I was a police officer and got my tbi while working in 2005. I hate when people ask what I do for a living. I still get really embarrassed and uncomfortable when I say that I’m retired. I’m just glad that I’m older now (49) and I look closer to being retired then I was when I was first hurt.

But the inevitable next question is “how long were you a police officer?” I want to lie and say 25 years but I never do. I hate the whole conversation and it happens several times a year. There is a perception that many of the people who retire early are lazy people who exaggerate their symptoms so they can collect “free money”

They only see me when I’m feeling good or when my head ache isn’t to bad and I’m able to go out. They can’t see the confusion or fatigue or me feeling nauseous or the spinny feeling I have or the how the sun makes me feel like in in a microwave or the that way the crowd noise sounds like I’m next to a speaker at a concert.

And they have no idea that I’m not talking to other parents at my kids events because I’m anti social or because I don’t like you. I’m not talking because when I feel this way, I feel exhausted and I sometimes slur my words. I’m really hard on myself and overly conscious of “sounding stupid.”

And they have no idea that If I’m not looking at you I won’t hear you if your talking to me. I really have close to zero peripheral hearing. I need to be looking at you to notice your talking to me. Once I had a parent confront me for being rude and then her and her husband walked away because I never acknowledged them when she was talking to me. But she was a few feet behind me and to the side and I never heard a thing she said to me.

We probably can all be guilty of jumping to the wrong conclusions sometimes. It’s just unfortunate that you are in a position where the chances of someone getting the wrong impression of you are increased. I know you’re not lazy. You would jump at the chance to swap what you go through everyday for a full time job.

I was 50 when I was injured. Can’t get disability because the judge thought I could work at a dry cleaners or clean offices. Your life sounds like mine…with the exception of hearing loss. I tend to hear things and zero in on them….like someone drumming their fingers or talking too loudly near me…and I want to go off on them. If people ask if I work, I just tell people I am medically retired. They usually leave me alone after knowing that.

I am a writer now, which I always wanted to do, but it was a brain injury that actually gave me a chance. That usually shocks people when they ask me what I do. Because they always think that a TBI patient would be one who just sits at home and drools on themselves.

Thanks Julie, it’s always great when you hear someone has been able to turn a negative situation to their advantage. It gives others hope ?

Before the new me I lead a team of software, process control, electrical, mechanical and hydraulic engineers. All including me on really good wages and we served the oil and gas industry on an international basis. This took planning and leadership combined with good knowledge of all trades. Do I miss it yes of course I do but I have to look at where I was and where I am now, I have been awarded first prize for artistic and craft by Professor Richard Demarco and I now am a furniture maker. I have now to make some money at it. But I dragged myself through 12 months of sheer terror ” am I good enough” 12 months of complete fatigue but I’m here I did it.

Making beautiful furniture is an amazing skill too. And perhaps you wouldn’t have had the opportunity to discover your hidden talent if you still had your career. Thanks for sharing how you made such a positive move after your injury ?

I think that’s what hurts me the most with what I go through, the comments people make. Why a lot of people are so insensitive, I’ll never know.

A lot of these comments are ones that other kinds of chronically ill people go through. I can’t count the number of times people thought the solution to my problem was so simple, even though it’s not.

Thank you for putting this out there.

I totally agree Crys. The lack of understanding isn’t limited to just brain injuries. It’s every invisible disability and even visible ones. It has taught me to be more open minded, which I believe has to be a good thing.

I came across your blog a few weeks ago and I love it! I got my TBI last October from a car accident and it’s so hard to explain how I feel to people and that the old me will never return and people don’t get that! I love how you are able to put into words exactly how I am feeling !

Kellie, I’m sorry to hear about your accident. But I do like to help other survivors express what they are going through. There was a time that I couldn’t even come close to explaining what was happening. But I read a article about the presenter, Richard Hammond talking about his brain injury after his accident on “Top Gear”. That’s when some of it started to make sense. So as I developed the skills I decided to help others in the same way.
I know it must feel like it’s been ages, but it’s not so try not to get too frustrated with yourself.
Thanks for getting in touch ?

After a few years learning to live life my new way I still think it’s necessary to back off trying to keep doing what you did for work and leisure. A cycle develops of 2 weeks just getting through it all then you get the side effects. The trouble is the way the world works now prevents doing less as we need to do… so it never ends.

I was devastated when I realised I couldn’t do my job any more. At the time it felt like the end of the world, but it was actually just the start of a new one.

I have saved most of your brain blogs and found them very helpful, it’s been two years ago since my tbi hitting my head against a brick wall playing tennis at 72, I consider myself very lucky and keep on trying to manage the side effects. It affects people in different ways, and as individuals we are trying to deal with it daily. As tbi survivors know, as generally we look ok other people assume that’s it over, but we know the changes we have to live. Thank you for your blog.

I’m sorry to hear about your daughters injury. Is she still in hospital or is she home now?

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