Please don't say this to someone after brain surgery...

I know I don’t process things the same as I did a few years ago, events and conversations now replay in my head until I work them out. Sometimes it can be a few minutes later, sometimes it’s a few weeks!

This one has been going round and round my mind…

When I was out several weeks ago the person I was talking to has known me for about 5 years, they knew I had a brain tumour removed and also knew from talking to me previously that I still had some side effects. But they aren’t a close friend and as far as I know haven’t read my book or blog and probably sees me as being ‘back to normal’ as, in their eyes, I do what I did before when I occasionally see them.

I had for some reason mentioned something about ‘saying the wrong word again and it not ever being the same since I had my surgery’. I wasn’t after sympathy, just understanding. Clarification. As I often feel very self-conscious and judged that I can start saying the wrong things and appear drunk or stupid at times, especially when I am clumsy too. If someone doesn’t know my reason why, then I am sure they are judging me negatively.

But instead of understanding, the person said:

‘You can’t always blame it on that you know’,

 and awkwardly laughed. 

I laughed back and walked away ...  Trying to decide if this was meant as a joke, as a way of saying ‘you are no worse than the rest of us and we all do similar', ‘stop going on about it’, that I ‘should be ok and over it’ now, that I was in a pub and no one else there would even notice, or even implying that I have always been stupid?!  😝

But the words were still festering in my head… 

I hate having to try and explain something quickly, to be asked a simple question or give a quick reply. I almost always feel an idiot when I open my mouth. Judged as stupid. When I am not so rushed and am not stressed I can have hours where I feel in control. 

Yet the times when I hate it, I want to tell people the reason. So they might realise my brain is maybe not working as perfectly as it should, not that I am stupid or it isn’t working at all. So they know I’m not drunk, and they can't say things I won’t remember…

Why can’t people talk honestly with me? Ask about how it makes me feel? 

I am sick of people saying 

‘No one would know’

… of course they would if they gave it more than a few seconds thought. I guess yes they might not know I had a brain tumour, no one can see that scar, but surely they would know I have ‘some’ kind of issue at times? 😬

• Do people not hear things in the same way I feel that I speak? 
• Do they not notice it when I randomly say something odd or can’t find a word? 
• Maybe they just think I sound like anyone else up the pub and why am I even caring? 
• That I just say simple words, as maybe a foreigner would? 
• Maybe they are too polite to say anything? 

But then it seems there are two different approaches from people who know you have had health issues:

One is where someone (and it doesn’t even have to be a close friend, but someone who knows what happened) walks up and says:

How are you doing? How is your health? 

And possibly even adds in the phrase: 

And how are YOU (dealing with it) now?

... Whilst listening! 💖

The other type is where people ignore you, pretend nothing ever happened, that nothing is wrong now and act like your life smells of roses! If you mention something about your health they don’t want to hear, or cannot face, then the act like they haven’t heard you, quickly change the subject or give their opinion while not listening at all. 

Occasionally they will say something like:

“I had vertigo once for a few days, it was horrid” 

or 

“Just have a drink and forget about it” 

– maybe they are meaning to be helpful (I try and take it that way!) but sometimes I want to scream… 

“Seriously? I spent 6 whole months feeling drunk 24/7, not able to eat without spinning, laying down at night and feeling the room move, watching TV gave me nausea, unable to ever 'sober up' before it started again. 

I wanted to focus but I couldn’t, yes my body acted drunk but my brain wasn’t inebriated – it was desperately trying to control the situation, to control the panic. 

Do you SERIOUSLY think I want to drink to FORGET it???” 

  😵😵😵

But this said, I don’t think many people do think, and even less want to upset you on purpose. I just don’t think anyone can truly understand unless they have been there or somewhere very close… 

But please, if you are ever with anyone who has a health issue and mentions something, just say 

“How are you managing at the moment?” 

and LISTEN.

and please...

Don't ever say "Have a drink and forget about it!"

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WHY??

Why?

Why is this world obsessed by beauty?

Why is this world fascinated with new?

We are we made to believe in perfect?

Why are our feelings distorted from true?

Why do people not care for others?

Look after what’s here and not start anew?

People are killing, people are dying

Wars forever, on what ‘the bad’ do

How do they manage to divide us?
Make them not human, say the untrue?

People are human and yet they’re the enemy

They are ‘a bad bunch’, it’s not just a few

So we bomb them, destroy them

Call them a Muslim, a terrorist or Jew

Say why they’re different, say they’re not like us

Block out our feelings and subdue

Elderly dying, no money to help them

Food banks for workers, just care for the few

The homeless have nothing, the kids with no dinners

Why don’t we stop this? It’s not taboo

We are paraded with fashion, like it all matters

Need new gadgets, a house with a view

The grass is always greener, your life will be better

Everything valued in what goods you accrue

And while we are lusting, wanting the latest

We’re distracted away from all the rich do

Tax evasion, controlling, tracking devices

But call them ‘smart’phones – do you have a clue?

Shares in arms, they make their money

Take others resources, kill the animals too

But people still but it, people still buy things

‘We are here to help’- if only they knew!

There’s no profit in caring, no profit in love

No control of the people and all that they do

Keep them sedated, fighting the irrelevant

Too poor to argue – we don’t need a coup

Divide and conquer, keep them distracted

Trump, Putin or Brexit – it all makes me spew

We need to wake up, we’re destroying the planet

The animals living here, and ourselves too

We need to stop sleeping, awake from our slumber

Have heroes who matter, change things and imbue

Ethical business, stop feeding the greedy

Not people who only make money from you

You don’t need an iPhone to be someone special

Fake nails, fake hair fake tits – just be YOU!

There’s no money in natural, no profit in reality

Stop feeding the greedy, it’s long overdue… 

 🙏

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My brain is still asleep!

This morning I was awoken to the door bell ringing and the dog barking madly. As I could hear someone near the door I assumed it was probably the postman and so half asleep stumbled downstairs to open the door. It wasn’t our postman (who is used to me being half asleep when he knocks with a parcel), it was workmen wanting to work on the streetlamp between our front path and driveway and wanting us to move our car so they didn’t damage it.

I muttered something, which from the look of the guy’s face I don’t think resembled words.  I had to repeat it a few times - saying 'I can’t move the car yet, I’m not awake enough to drive it and you will have to wait at least 10 minutes'. He just stared at me looking incredulous that I wasn’t able to move in there and then, muttered he would fix another light first and would be back soon.

I walked back up to bed, woke up a little more and went downstairs to call Dave – who answered his mobile from his workshop in the garden! He hadn’t heard the dog bark when the guy knocked, but went outside and sorted it out as I went back upstairs again to wait for my head to wake up along with my body…

But for the rest of the day, I kept saying odd things. 

Not being able to find the correct word, or find the plural of a word. Saying sentences that did not make sense. My family even laughed when I said I needed to put water in the windscreen wash on the car to make it ‘un-illegal’ … replying ‘surely that’s just called legal?’ 

Exactly what often seems to happen when I have to get up too fast and my brain doesn’t feel like it’s switched on. The whole day stays confused.

I don’t think most people can even begin to understand..? 

I did manage to go shopping briefly with my daughter in the afternoon, it still feels odd walking around clothes displays or escalators (anything where I need to keep turning in one direction.) I feel like I could easily lose my balance as I feel a bit wobbly. I feel too slow in being able to move out the way of people walking towards me on pathways. The lights feel bright in my eyes. I have to control the feelings that I am not comfortable with and keep going. 

We found some shoes my daughter went in there for and as she was looking at socks I saw some which (although aimed at sports) seemed rather appropriate, they said a mixture of ‘no giving up’ and ‘winner’ on them. So even when it’s just another normal day…  I now have reminders on my feet.

 

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Dumbed down

I don’t need your acceptance

Your ideals, your standards

Your rules and your stupid lies

I don’t need your drugs

Your caffeine, your valium

Your alcohol or your little white lines

Don’t need your gadgets

Your cars, your fashion

Your fancy homes or society’s ties

I am happy with who I am

Happy to be me

Happy to be free

Feel the pain

Feel the joy

Feel the love

Feel all that’s inside

You want me to be dumbed down

You want me not to feel

You want me tied to all this crap

To keep us half asleep

As when we are true to ourselves

We really become free

And you lose all your control

As we can finally see 

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