Unseen

 There is so much of me that is unseen. Even when I am in someone's face.... it can be like I am talking Chinese to them... people don't listen... or presume that the know me.... when the reality is they have no clue.... The story of my life really.

That is not however what I am writing about today. Some of you know already I have had a horrible few weeks changing my epilepsy drugs.

Pushing myself to the point of being drugged in order to prove to the doctor that I knew already that their suggested amount on the new drug was too high.

Thankfully its sorted now.... although its still early days...

There is still time to lose everything that I have fought hard for.

The thing is I fall within a small  percentage of epileptics and therefore in one sense I am very fortunate but in another sense not being in the normal band can be difficult. People forget or don't always get that I still do things to adapt, or try and stay seizure free. 

You just don't see it.

In recent weeks, knowing that I have had to adapt to new meds. I bought a new chain for the SOS talisman mum bought me as a teenager. I adjusted the strap and popped it on again for the first time in over 2 decades.

It was a pragmatic decision, realising that the likelihood of me collapsing, foaming at the mouth, losing control and potentially forgetting my name... was perhaps slightly higher than normal.. with different drugs going into me. Not only that perhaps 3 times the amount of drugs for a short period of time. But it is still a visual sign, I have not needed for a while.

It's made me aware again. Remembering seizures from years ago.

I always struggle on forms when it says Are you disabled? Well yeah I have a disability and yes if my job involves computers then yes it can affect my daily life... but mostly it does not . I have to declare it though but I would rather not have a guaranteed interview...

From the bus driver that said "You don't look disabled" when I showed him my pass years ago when I was not allowed to drive to the consultant a few years back analysing my CT scan after a fall.... totally amazed at my brain shape that has two "significant atrophies and an extra bit" 

Bless him trying to explain the scan he actually said "if I had this scan and had to try and pick you out within a room I would not pick you out, I would look for someone with more pronounced learning disabilities.

He was so intrigued I think he forgot that I was still staring at the screen trying to comprehend the bit about significant atrophies... Back when I was first diagnosed there were no CT scans so I had never been aware of the atrophies... I wish I had asked for the ct to me emailed to me now.

The thing is when someone says "You're no right in the head.." I can genuinely say that is true, infact I am quite unique lol

I tried to go to a support group once, a helper at it had asked me to go but the truth was that I could not go again as others in the group were so less fortunate than I was, I found it hard to be in the room. I did not face as many challenges and I felt like I was rubbing salt in their wounds rather than being a positive help.

But its not the type that you grow out of... It's never gone away. I just try to take steps that avoid bad situations. Step away from the laptop, use remotes for the TV and in this Covid online area - I sometimes turn video off or use an overlay on my glasses.

As someone said recently 

"It doesn't change you.... You are still you, but it might mean that other people have to adapt and take time to  understand you better."

I rather like that. 

Own who you are.

Navigating the Storms of Life

 Will your Anchor hold in the storms of Life?

An old Hymn that my dad loved. I think a lot of men his age liked it... it seems to have been a Boys Brigrade favourite in a certain era.

My dad left notes in his diary to say that was a hymn he wanted in his funeral. Tucked away at the back of his diary. We never even knew it was there.

"We have an anchor that keeps the soul,

Steadfast and sure when the Billows roll,

Fastened to a rock which cannot move

Grounded deep and firm in the Saviour's Love"

Who among us have not need to ground ourselves in recent times.

Restrictions are hard but Life is precious.

We have all had battles in 2020. 

Mental, emotional, financial and physical.

How we navigate through them can make all the difference.

For me, that has meant being intentional.

Phoning my friends, reading, lighting candles, having my fire pit on... to name but a few.

Early on last year my cousin called.

The minute she called, I knew something had happened.

Her words hit me... these days funerals are tend to be when we talk.

She is always my first Christmas card that I receive.

It's true though the last time we met was the day of mum's funeral, a few years ago now.

I came off the phone and thought why should it be the only time?

Since then I have tried to me more intentional at calling her.

It's funny that  I always seem to be the one that everyone thinks is alright.

I wish.

What's it they say.... in times of trouble, you know who your friends are.

Resilient.

Because I had to be. Few have my back... Although some do.

Relationships don't just happen. They take time and effort on both sides.

There are often many ways to see someone. You can be competent, yet lack confidence.

You can be articulate and outspoken, yet really dislike confrontation. 

How can that be? How do you hold out in a storm? I guess it comes down to does your survival mode kick in? Will you flee and avoid the conflict or do you stay around for the storm.

After ever storm there is a calm? The place might look devastated, things may be broken, but they can be rebuilt.... Sometimes even stronger.

That's the thing. We can be broken, restored and made stronger. Resilience.

I know that in my darkest hours my Anchor has held me. Sometimes that has meant an intentional Pause and a physical inhale to centre me.

Sometimes that means I speak up and say things other people are thinking.

As a woman, you get into trouble for that. Instead of confident, you are brash or emotional.

Instead of a leader, you have authority issues.

Instead of bold ..... you are belittled and Gas-lighted.

Did she really just say that?

Yup.

You see now that I have said that, some of you that know me in some way are probably thinking about the organisations that I am a part of and are trying to read between the lines. Some of you are already angry, making assumptions - half composing your email response to me in your head.

I must mean someone, right?

Can someone who has an interest in people, organisations and dynamics, not just share from her observations and experience without someone getting offended?

That is where shame comes in.

A whole different kettle of fish.

How's that anchor? Still with me?

You see offence is something that is easy to take. Often offence is taken when you assume something. You see sometimes offence would not be taken if you check the facts or tried to understand the other perspective. 2 + 2 is 34.

Open communication is better than no communication. If something is open, you can agree to disagree or seek restoration. Hidden stuff generates bitterness, resent and anger. None of these are positive.

It is true that even our darkest times can mould and make us stronger.

Seek out light and the people that value and honour you. It's in those dark times you find that you need the Anchor and you need true friends.