I’m not strong or brave, I didn’t choose this brain injury

Michelle #jumbledbrain — Mon, 03 Jul 2017 11:22:09 +0000

Often when there isn’t really an answer to a subject, many of us have a habit of referring to well used phrases. (And yes I admit I have done the same all too often as well.) I’ve often taken issue with how people can describe children with cancer for example as brave. Why are they brave? They are just getting on with life, what else are they supposed to do?Just like them, I haven’t chosen this situation, but you only live once. Or would it be “normal” to give up once you sustain a brain injury and just wait to die?

Not sure I fit the definition of brave.

Possessing or displaying courage; able to face and deal with danger or fear without flinching.

I mean if anyone believes I don’t flinch, they are kidding themselves. Whilst it has improved, I still get startled extremely easily. So embarrassing! If I’m not looking at you and you go to start a conversation when I’m concentrating on something else, boom, I almost hit the ceiling.

No matter which definition of strong you choose, I’m not it.

Having strength or power greater than average or expected.

Well I’m no different than any other brain injury survivor. We all have extremely difficult days, and during that time there can be a lot of self doubt. So believe me, I am only average. It’s just that those who haven’t faced a brain injury don’t know what “average” is for us.

Of good quality and condition; solidly built.

I’m physically weak, and totally out of shape. I know people might mean mentally I’m strong, but they’re wrong. At this stage I doubt my mental health will ever be perfect. Just that currently I’ve just not got a date set with the self destruct button.

Not faint or feeble.

You only see what I allow you to see. If you saw me trying my best to be “brave” when entering the jungle (otherwise known as the supermarket) you’d think differently. As I struggle to contain my anxiousness about all the people, I rarely manage to complete the visit unscathed. I need to calm down with a cup of tea and deep breathing once it’s over. I imagine one might have a similar expression when they have been walking through scorpion infested tunnels. You can read why it’s so traumatic for me in 7 Executive dysfunction challenges after brain injury.

If being brave is the absence of fear, then I’m not a good example.

I have been frightened of everything. I’ve even been frightened of that there is something I have forgot to worry about! Sustaining a brain injury for me, has meant living in survival mode. At times I have tunnel vision and can’t begin to look to the future. I just have to live in the here and now.

Am I brave for discussing my experience of brain injury?

Not really. It would only be brave if there was something to be ashamed of. But seeing as I was just the casualty of an unfortunate accident, why should I be ashamed? But even if it was because I had been in a fight, should I be ashamed of the result? No. The cause would not be something to be proud of, but having any disability is never something to be ashamed of.

I don’t want your pity.

I don’t write about my experience of brain injury because I want everyone to say “Oh poor you.” If I stopped any random person, I’m sure when asked they would be able to name at least one ailment they have to manage. So if having to cope with not being perfect is brave, that means we all are. Those of us who are trying to raise awareness of a condition don’t need to be patronised. You don’t have to hear what I have to say, but if you choose to listen, have an open mind.

So I’m sorry if this comes across as ungrateful, as I know people use the words brave and strong in a well meaning manner. But when good intentions are approached the wrong way, they rarely end in a positive result. Actually sometimes I would rather people acknowledge how fragile I can be. There’s nothing wrong with admitting you struggle with something. Often that’s the first step to finding a solution. So in my opinion we should stop reacting like it’s unusual to talk about these things. All that does is add to the feeling that we need to bottle it up and pretend we are OK.

How would you like to be described after your brain injury? Do you feel understood when you're called brave?

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My first trip away with a brain injury ends in embarrassment

Michelle #jumbledbrain — Tue, 01 Nov 2016 12:46:12 +0000

Following my brain injury I didn’t take much to make me anxious. So the first summer holiday after my accident, my partner and I decided to stay in this country. We were going on a short tour of the North East of England. We’d already missed out on the holiday we had booked to Las Vegas because that was due only 1 month after my accident. Whilst I have been before and travelled to the states many times, that would have been James’ first experience. Plus he was supposed to be travelling ahead of me for business, and then I would join him later. But he had to tell his work he wouldn’t go because of me. So I mean no disrespect to Northern England, but it’s a different kettle of fish to Vegas.

But this was the safest and sensible option, as even the thought of dealing with an airport was too much for me. We had a few activities planned, such as seeing the seals living on the coast, and visiting a bird sanctuary. As a huge animal lover these were brilliant for me. One day we went to Whitby, which was the most Northerly place we were visiting, and therefore the furthest from home. James particularly wanted to go there as the coastal town is famous for its outstanding scampi. The UK was experiencing the hottest summer for the last 30 years at that time. But as my nervous system often told me I was cold I chose to wear Jeans rather than shorts.

That was my fatal error. Even I could feel it how hot as it was, as the temperature that day was around 30 C or 86 F. I was really uncomfortable in my stupid skinny Jeans, and it was making me grumpy and exhausted. Most holiday makers were loving the unusually good weather, but I had a face like a smacked arse. James suggested I buy some shorts to change into, so we tried to find some. Whitby is a traditional place geared towards its fishing industry, and so it doesn’t have that many clothing retailers.

But I was stuck in my ways, and hated the idea of having to spend £30 on a pair of horrible shorts I would never wear again. I was being difficult, and even when James said he would pay for them, I wouldn’t even try any on. What was the point, how would I get changed once I’d bought them. James tried to give a solution, but my rigid brain couldn’t handle it. “Just get changed in the changing room and wear them to the till and tell them you are buying them and wearing them immediately.”

Well that was it, full meltdown mode had been activated. I’d always been respectful of rules. But post brain injury the idea of of doing something so unusual, just blew my mind. I went on and on about how I couldn’t do that and made him feel like he couldn’t do anything right. So even he gave up as he couldn’t take the stress I was causing. We went back to the hotel and he hadn’t even sampled the scampi. He was prepared to drive the 4 hours home right then, but we stayed the night and left in the morning. That was still 3 days earlier then was planned.

I was thankful to get home although I did feel bad for ruining things. But imagine if that had happened in Vegas! Getting an early flight home because I was having a paddy about something ridiculous would have been expensive and even more embarrassing and stressful.

The following year we went to Rhodes and stayed in a quiet resort were we had a private pool. That went much better as there were no crowds and the pool meant I could regulate my temperature much better. But we were only able to do it because I wasn’t as crazy as I was the year before. Otherwise airport security might have thought I looked anxious because I had a bomb. (Alright so that’s probably a bit over the top, but lets just say it wouldn’t have worked.)

What holiday nightmares have you had after a brain injury? What are your tips on how to cope?

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