An invisible difficulty

By Jonathan Beebee

Somewhen in the near future will be a landmark time for me. I am approaching the 19th anniversary of my head injury. It happened when I was 19 so I will have lived as long after my head injury as I lived before it (no hiding my age now)

The fact I am living at all is incredible. My family were told I would die when it happened. When the doctors realised I wouldn’t die they told my parents I would be a “cabbage” (great choice of words) and that I would be dependent on them for everything. That was my future. Thankfully they were wrong. I have taken strength from what happened and dedicated myself to ensure people who do need support get high quality support. Turning the bad to good.

Most people I meet now have no idea that I had a head injury. Only the people who know me well know how this continues to affect me on a daily basis. Whether it actually does affect me or not is something I will probably never know. When I forget something is this because of my head injury or is it just a normal thing to happen? Do I forget things more than others? There is no way of truly knowing. Here are some of the things I notice that I think are a result of my head injury that most people probably don’t notice.

I do have a terrible short term memory. When I meet new people I can’t remember names. When I am told to do something if it isn’t written down it’s forgotten. It’s not that I have no memory but I have to try really hard to get things from short term to long term memory and if I haven’t emailed myself about it I won’t remember.

I have some type of dysfluency. The words I think of saying are not always the words that come out my mouth. Sometimes the words that come out will be completely random. Sometimes they will be starting with the right letter but completely the wrong word. Sometimes it will be another word associated but completely wrong. Most of the time I can brush this off with ease. However I have noticed it is getting worse.

I also have word finding difficulties. This can be similar to other people but I can stutter, stumble, and just freeze in conversations. This was worse at the time of my head injury. It’s still present but I can cope with it. A good coping strategy for this is to look thoughtful.

I cannot do multi-tasking at all. If you haven’t got my full attention I probably have no idea what you are talking about. I need to put a lot of energy into focussing on something. When all my energy is going on one thing I can’t share that attention with anything else.

I am impulsive. I will jump at a decision and take risks without thinking things through. Most of the time this is more of a benefit than a problem.

There is something about rules that means I have to try and break them, or at least push them as far as I can. If I am told I can’t do something I will go out of my way to do it, even if I don’t really want to. Though this was probably something I did before my head injury if I am honest.

I have a quick temper. If something isn’t right I can go from being cool, calm and collected to totally full of anger in seconds and I don’t let things go. Before my head injury I remember myself as being very passive and not getting angry about anything. I think my passivity was part of the reason I got the head injury in the first place, which may be why I avoid being passive now when I could let things go.

Some things that should affect me emotionally I can be completely numb to. I know I should feel something but I don’t. It’s not that I don’t care, just it isn’t affecting me.

There has been some form of central nervous system problem since my head injury. My legs can go into random tremors is the main issue. This is happening less now than it did but it’s still there.

I probably am too open about things that I should keep personal. Probably like most the things I’ve said here. I often say things that I probably should regret and should have kept to myself. Thank goodness I am numb to feeling shame at what I have said, well most of the time. I do recognise mistakes.

Most of these things I have used to my advantage. My impulsivity has made me take risks, my anger for things that are wrong has led to me speaking loud about what I am passionate about. The attention I need to put in to focussing on things means when I am determined to do something it has 100% commitment. I have benefitted from these difficulties as much as I have struggled. Well most of the time. When things are going wrong it’s not easy.

I will never know for sure if what I am experiencing now is from the head injury or just part of being a normal human being. I know I think about it every day. I know I struggle with it. An invisible difficulty that is so invisible even I’m not sure if it’s there.

I feel huge pride at the difference I have made for people with learning disabilities, and none of this would have happened if my head injury hadn’t happened. It wouldn’t be happening if I didn’t continue to think that person being supported could be me. I am proud of my head injury. But that doesn’t mean it doesn’t cause me problems.

Next week is Learning Disability Awareness Week. This is always a great opportunity to raise the profile of the lives of the people we support. Personally I will be thinking of everyone out there with a hidden disability. The person whose needs aren’t instantly seen by everyone. The person who people make assumptions about but they don’t have a clue what is happening for them “behind the scenes”.

For PBS4 we will be focussing on the Transforming Care agenda. The title Transforming Care meets our ambitions. We want to shake up how social care is delivered and see if it can be done differently. We want people with learning disabilities to receive dedicated, personalised, evidence based support. We want to also focus on Transforming Lives. On how the support we are developing is making a difference to the lives of people we support. Some of the things we are doing are huge. Some may be seen as tiny on the scale of things but are enormous for that person.

We will aim to share a blog a day next week on #TransformingCareTransformingLives (not the easiest hashtag for twitter – feel free to suggest alternatives) sharing the successes we have achieved. We welcome others to join us and share their successes too.

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3 thoughts on “An invisible difficulty

  1. luke watts says:

    Wonderful. Just wonderful.

  2. Tracey Eyles says:

    Insightful and interesting.

  3. Kim Jones says:

    When i read this jonathan i was over whelmed with it all you are amazing person and so dedicated.You have changed so many peoples lifes.

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