speaking....

I think I claimed being raped about 4 years ago 

I'd always thought it had to be violent and sinister. A stranger in a park. A moment of ripped clothes and torn dignity. A cloudy figure who jumped out and took.

It was, almost that. But I knew him and at the time, I was drunk enough to believe he loved me, and old enough to tell myself I'd consented.

Sometimes when I'm nearly as drunk as I was that warm summers afternoon I convince myself I'm over it. I've understood it all.

I tell people about being a rape victim.

You're always past tense. Raped. It happened. The implication, it's over.

It never is. It's always there. 

Tonight I told my husband I loved him and as he took me, I trusted him. The biggest compliment possible. I genuinely consented. As much as I ever can. There will always be part of me that isn't sure.

My body creates things I don't consent to. I am angry with it.  How dare it. Such a betrayal. 

Why tonight?

I said out loud that I'd been raped to people I know and like. I was drunk and empowered by their care. It felt true to say it. It was true. It was my past. But now I'm worried. Because what if they felt uncomfortable. because they might feel uncomfortable. 

Always worried about it.

Getting it all out.

I wonder how many of us don't know how to feel about it. 

Black Lives matter

I've been learning, 

I thought I was at a good level of, not being a racist. I think I'm definitely up there with the, I' not actively racist people. 

I also thought, maybe I was quite good at not being unknowingly racist. 

But the events of recent days and weeks have reminded me of m=how much more I need to educate myself. 

It's not enough to have good intentions.

It's not enough to speak out against the obvious. 

It's not enough to recognise your privilege 

It's not enough to share posts

It's not enough to tell your child, this is wrong, we don't agree with this

I have to educate myself, I have to listen and allow myself to have been wrong and to learn more. I have to be willing to be better than I am. 

I'm going to try  

she isn't here

Like a lot of the world right now, I'm missing my mum, She should have been here, we should have been sharing my life and loving her face as she saw what I've been seeing for the last three years.

She's not, of course and I fear, now never will. But you never know.

And the chances are she wouldn't have felt she could come now as with my dad's possible diabetes and now the news he's been booked in for an emergency MRI, she would have been so very torn.

I am wondering what his next few months, years will be like for him. How will he manage this new set of symptoms and will they even operate? Can you risk a man with his disability to go in for an operation, and that's before any level of risk with COVID 19. What anaesthetist would take that chance?

Something will one day kill him, we're none of us immortal and he has lasted far longer than anyone ever thought possible, tougher than a bull elephant my dad.

A spoon full of sugar

I always pick up when my mum calls, especially if it's a strange time of day. I'm waiting for the news. Shed called yesterday and although it wasn't 'the' news there was more news. An update, a keeping me in the loop.
They suspect my dad has diabetes.
This struck me as another cruel blow. When your life consists of a sad and slow routine, one of his few joys is carrot cake, a sweet moment at the end of each meal.
For now, and who knows how long, he has to cut back on sugar.
This next thing, this is cruel.
VHL just is cruel.

more than enough

I'm not sure when it started, but often I do more than enough.

Cleaning

Contact

Care

The best people in my life I measure by a knowledge of, I am enough.

I don't have to do anything.

I do because I want to.

Because I can.

The only exception to this is my child. I have to actively stop myself doing too much so that she doesn't become a spoilt brat. I'm instilling independent worth. While, I hope giving all the love and attention are needs. 

Unconditional love. 

I've been given it, I've craved it and I've thrown it away. 

So when I doubt my ability to give that, I end up giving more than enough. 

inflicted by honesty

Saying how it is

Knowing who's listening

Acknowledging the difference

Be playful if you can be

Consider what you say

Am I private?

What you say can make a difference

Speak

Speak

Speak 

Fat Bastard

Had one of those days. Came home to a messy house, a dismissive daughter and an absent husband. 

Decided to lie in bed an read a good book. 

Had a little cry and got warm.

Got a message from a friend and felt a bit better.

I told my husband what was on my mind. He listened, didn't talk. 

Then husband cooked a lush dinner, daughter came and cuddled me while I finished the good book and we watched a silly film while I sipped a glass of Fat Bastard.

And I thought of you. My friends who know me.

I am blessed. 

And I thought of how brilliant it will be when we drink a bottle of it together. 

And now I'm listening to husband huffing and puffing at the online poker game and his frustration at his own playing.

And it's making me smile.

grumpy

I've woken up very grumpy. Perhaps a little too much wine bar night hasn't helped.

I'm grumpy at the washing up in the sink, the fact that the national power grid has gone off again, so the load of washing in the machine is now not going to be finished until the afternoon so it won't dry today.

I'm grumpy that some ex students on twitter have been rude about the school, when I know how hard the staff are working to keep us going and hopefully open in September.

I'm grumpy because our house keeper who we haven't seen for 4 weeks sent a message to say they can't afford to buy food. Even though we are still paying her, so I think maybe the other 2 members of staff who employ her might not be. 

And I'm grumpy because our tree house is broken.

And yet I know these are all such small things compared to what other people are going through and I feel like a spoilt brat. And that's making me even more grumpy. 

Holding onto you

I've been looking at photos from the past and trying to remember where I was in them.
The easy days I suppose, when you didn't think very much was significant.

I enjoy seeing how so many people look the same, I seem to always look the same, my face a little less round and my belly a little bit more round.

And a few minutes ago I saw a message on Twitter and it was a sign from a man on a ventilator - he'd written 'I'm not giving up' and I cried. I know that feeling and I know what it looks like to see it on someone you loves face. I also remember the time in that hospital bed when I told my mum I was giving in, I couldn't do it anymore. I couldn't try and more. I closed my eyes and told the universe I was done. My eyes were already closed and I thought that maybe that would mean the horror of what I was feeling might go away. It didn't and I endured. I kept feeling and I was saved.

I've wanted to give up so many times in my life, you're not human if you haven't. I am happy to give up in a Frisbee game and when I know my Yorkshire puddings have failed spectacularly. I've given up on thinking someone will love me, I've given up on people who have hurt me too much, although not often. I'm not giving up on much else. I almost gave up on teaching, I nearly left that but I'm so pleased and grateful I didn't.

So I'm not giving up on the idea that this school will survive this, that we will survive this. I'm not giving up on hope and life and I'll hold onto the knowledge that I am strong and so are those I love.

Tension is high

Navigating emotions when you're stressed and tense is hard.

I take cortisone replacement steroid because I had both my adrenal glands removed. I do have a tiny but that was left behind and over the years it has shown it can cope with quite a lot of stress.

We all have our ways of coping with stress.

I just realised I forgot to take my tablet this morning.

Done it now!

I realised because this morning I have been doing part of my job, that is helping the staff of our school through these difficult times, helping keep others in the loop, trying to balance need and emotion. And I felt my arms tingle. That is a sign that my cortisol levels are low.

And it's stress. The stress hormone.

I never even got to say goodbye

A cliche line from a film.

A regret.

A common reality.

And now, even more than the everyday. At least, it's now more public. 

I think about saying goodbye. I'm not sure if I'd want that. To be so certain and so sad and so final. 

I want the last moments between me and the ones I love to be much more of a see you later. Because even though I don't know what I believe to be the next phase of life. It shouldn't be goodbye, it's got to be see you later. 

Keep calm and carry on

I'm trying to control what I can, think of what I can control and not let myself dip into fear.
Some days it's harder than others.

All this, the world is aware of all the things they hold dear.

I'm keeping busy.

Online lessons, thinking of things my students can do from home and trying to balance the fun and keep the pressure low.

There is lots I can do, lots I will do.

I miss the teaching of actual children. My usual place of solace when I feel lost.

There has been a death of someone in our community and the tragedy of this can only be made good if it encourages everyone to be safer, take this all more seriously.

when you are isolated

It's clear that the world is never going to be the same. So many of us have now experienced, and continue to feel the acute anxiety that comes with such a huge amount of uncertainly.

As my family and friends are preparing for the inevitable lock down I am still struck by my previous experiences and how this fits in. I live with the fear and threat of VHL, right now one of my worries is the cancer in my kidneys and how it may or may not be growing and how I'll know. That thought sends a small tremor of worry through my gut. Frankly I don't know how I don't have IBS.

So often in my life I have held my worries silently in my head so as not to upset, freak out or annoy others. I have sat quietly and planned how I was going to survive the next moment. Most clearly were those three horrendous weeks lying in a hospital bed, most of it with my eyes closed and waiting for someone to say they might be able to tell me what was wrong and then waiting to see if someone was willing to fix me.

It's mostly just me and my thoughts and I don't bother many people with them, why would I, who would want to spread that. And then COVID 19 began to steal the security so many people feel, it has taken away the safety net of a comfortable life and exposed the fragility of life and I don't like seeing that worry and stress in others, in the people I love. And I want to stop them all. Protect them.
Keep busy, make sensible plans, distract yourself, look at the silver linings, be as positive as you can an cry when you need to, keep your chin up and remember:

everything passes, the good and the bad

COVID 19 and me

As far as I know, currently I don't have it.

Today the world suddenly seemed to get a taste of what a constant medical threat feels like. This virus is showing each part of the world how it feels to be unsure what the next few weeks, months and coming year has in store. 

Those of us who have lived with yearly results know this feeling. Frequently having bad news and not being sure about your health.

I'm nervous about what this new threat means. I'm worried for so many people, the ones I know and the millions I don't.

I'm disappointed by the disruption.

I'm also intrigued by the panic. 

I'm considering putting a few more tins in the cupboard.

My draw of UHT milk is full.

when your past sneaks in

I had what you could refer to as a re-laps. Nothing medical, all emotional.

I didn't know how to say, slow down, let me do this properly, this is my new place. Partly because I was so excited by the idea of it all, partly because I want that time to be made right. Even though in so many ways it was I wanted to share some of what wonder there is here.

And then there is was, someone here acting like someone there and my defences went up and my fear crept in and my worry spiked and I sat on the steps and tried not to cry, tried to fix everything. Got overwhelmed by the enormity of all of here and so I did what I always do - I got on with my day job. I retreated into work, even though this is all about work.

My strong and competent layer trying to stay there, and without knowing someone did it just the wrong way. I was right back at that oval table, eyes on me, answer, give details, and I felt the challenge and I knew I'd gone about it all wrong.

But I found solace in a friend and the compassion she has and the way she knows me and I cried more, let it out, said all the irrationality out loud and was able to take a step forward and as this occurred my guardian angel reached out and there too I could clam myself and know I could make the right choice, for the right reasons.

flying away

Today I've flown to South Africa. We're on a girly few days. 

New friends and adventures.

As the plane ascended I breathed a private sigh of relief. No nasty brain tumour. No headache, no symptoms.

I'm now me relaxed.

new year, new hospital

I've done my best bet to avoid knowing what the inside of my local hospital looks like.

I found out today. 

I was very frightened by my symptoms. Completely aware that it could be caused by all sorts of things. Completely aware that one of those things could be a fast growing brain tumour.

Completely terrified by the dizziness that didn't subside. 

Completely? Reassured by the neurologist. 

It's an infection. A nasty one. But not a brain tumour.

My husband was scared too. His silence at my worried ramblings about scans and flights and insurance and 'oh god, I can't go through that again.' were met with understanding and patience. 

I know I have cancer

and I know it's there all the time, waiting and maybe growing.
I had a sudden flash of fear this week that my time may be up. I wanted to run home, book into my GP and say - you need to check. How much is there now.
If it were possible I'd want to know everyday, just what my body is up to; behind my back.
If it were as simple as stepping on some scales, I'd be obsessed, I'd do it time and time again, before bed and in the morning.
Let's hope it's never that easy.
I don't possess a set of scales.
I do possess cancer.
well, it possesses me.

To everything, turn, turn turn

I have space to think here and I do a lot of it. To drown it out when I want to sleep I listen to podcasts.
But sometimes it is good to think for a long time.

Life here allows me to think about what I value and time after time it floats back to being happy while feeling I'm contributing, making a difference.

I consume social media and follow the news. I'm struck by the juxtaposition of the joy and horror. Here it's full of the same but perhaps more stark. The special school I visited have almost nothing. They have a room and chairs. One table. A handful of pens. 3 exercise books. This is common here.
We can't change much here. But we have to do something. Spend money and make sure it reaches the people who need it. And give money.

So I feel like my life is extravagant and I feel more privileged than ever before. And I am happy but I could do more.

The unknown

One way I cope is to plan various outcomes to the unknown.

I think them through, who can help, who I'll be, what I need to organise.

I've lucky enough to have a pal who is happy to listen to these plans and she has the good grace and love to join in, to agree or suggest and today she even got excited by one of my random plans as it would mean we would be close to each other in this imagined future.

My plans don't involve me being dead. So far I've decided that I don't need a funeral plan, at the moment all of my plans are me surviving, because I will.

This life, this VHL life means you have these thought though. My daughter and I, while waiting for out karate lesson to start were discussing the possibility of her being a good kidney match, and she at her tender age is automatically willing to give me one of hers. And as she reminded me, she hates injections. I suspect very few people talk about organ donation, let alone to their own mother. I wonder if I'd accept it.