Sunday, June 17, 2018


I was called a saint yesterday. It's because this weekend I'm looking after, I'm responsible for my pals 3 children.

I don't see it that way.

I look after 20+ every day. Every school day that is.

What's miss important is that my new friends get to be together.

Together, it's an important thing.

Soon I'll be home, London, Rugby and Norfolk. And I'm still feeling mixed about it but it will mean I'll get some together time with people that matter.
And the craving to go to London is growing as I watch a TV show set there. I keep seeing bits of the London I know. I'm looking forward to being there.

Saturday, May 26, 2018

The mundane truth

I'm drinking wine, on my own. At university that was a no no. Now it's very normal.
I've had a very mundane day. And I've liked it. I've kissed my little girl and had lots of cuddles.
I'm watching Netflix and I'm a bit tipsy.
This is normal. Yes?

Saturday, May 19, 2018

Things are different... I shall add as we go along

A question I hear in my head often is, why did we come here. The truth is always:  "many reasons."
Each one of those reasons would be enough and each of them is the only reason at some point.
Now we're here and in just a couple of months we'll be taking a trip home to Blighty and I suspect some of the reasons we could have stayed will make the following August a much harder trip.
But Africa, my piece of it is very interesting indeed.
There are many small things that make it different.
I intend on adding to this list.
The weather...
Watching out for stupid goats on the road
The crisps aren't very nice
We don't always have power
It's big
There are lots of holidays
No need for heating in the house
Selling live chickens on the road side
The creapy crawlies in and out of the house
Sitting in the sun most days
The colour of everything
Seasonal vegetables and fruits
Having to the malaria kits and treatment with you on trips
The lake
Solarising water
Seeing poverty
the language
Price of gin
Clothes shopping
Carrying things on the head
Having staff

Wednesday, May 16, 2018

Poorly but fine

I've got a nasty cold. I'm in bed but I can't sleep. I have a temperature. But I'm kind of fine.
It's odd feeling ill somewhere very different. But easier to stay in bed as the pressure to get into work isn't any way near as accute as the UK.
I'll go and teach my year 7 but otherwise l will rest.
See if I can get any sleep.
My little girl was worried, it's hard for her. Her mum in bed brings back too many horrible memories. I can see the concern all over her face. Only thing to do is stay alive.
As obvious as this is to say, I do so hope I don't need any surgery for the foreseeable future. For her as much as me.

Friday, May 11, 2018

Each time I cough

I used to hiccup.
Now I cough.

Funny. Both involuntary one quaint the other a potential for germs.
However I now do the later more.
So hidden, my quaint disability. I'm struck that it's so survivable. Well at the very least I've surrvied. And so has my dad. Not my brother.
Today I took a step back into the path of a career I had been so very certain of. Without knowing it the growing number of hiccups meant I couldn't be who I assumed I would be in that role.
And now I am feeling that despite my ever lasting odd cough I'm more myself.

I feel like it's going to be a good few years. I hope VHL agrees.

Wednesday, May 09, 2018

What makes me happy?

On Monday I went to first Zumba class. Unlike my ridiculously fit and capable friend, who bounced the whole way through, I look it fairly easy.
As I shook and stepped and laughed at my lack of coordination, I was reminded of how different life could all have been. Of the brilliance of the human body to recover and cover up. Who would know my knee hurt. Who would know my arm tingled away. Who would have believed that the woman who lay in a bed for three weeks would now be grapevining her way across a school gym in Africa.
That I can laugh at myself and find joy.
I am finding the joy in life. My confidence is growing.
I am often happy.

Friday, April 27, 2018

I feel so happy

A brilliant night, an event video helped organise and it was superb. I was happy in every part of me. Well almost.
I watched my daughter and loved her. I enjoyed myself, having found be freedom in dance. I belonged and I was loved in return.
And now I'm in bed with my home the centre of a brilliant party. I'm too tired to stay up. But I'm brimming with pride and satisfaction.
The ever present cloud has a bright silver lining and that's what is shining tonight.

Saturday, April 21, 2018

The morning after the night before.

My friend has gone back to the UK.
I cried at the airport. A definite feeling of grief today. I cried a few more times after that too.
I miss her already.
She's such an amazing person. Beautiful in mind, spirit and all the rest.
It was lovely just having her around gave me the confidence to be a more the me I am in London. I drove more, talked more, listened more, possibly drank a bit more and danced.
I love her.
Oh I miss her

Oh to love yourself

I'm having a lovely time. I'm at a party. I just went to the toilet and saw my face. Not bad
Here I am. A foreigner. But I feel so welcome. And I felt confident and happy.

I had two people by my side who I know love me. I've never been too sure if people do but it's a new feeling to be confident in their love.

The fact my mum and dad love me unconditionally has sustained me. But my self confidence isn't quite as it seems. 

Friday, April 13, 2018

Saw me through the chapter

A colleague is writing a blog. I'm quite jealous because I don't think I can share this in the same way.
She tells of private things and they are of course public now. And so do I. A lot of me wants everyone to read my blog. I imagine it would help people, maybe understand me. And then I wonder if that's even true. The age old, depressingly clichéd question; who am I?
More than a blog
What was hard to read in the blog, just started was the phrase: saw me through the chapter.
Because a life with VHL is not ever going to be a chapter. If only.
And that's just the VHL bit.


Thursday, April 12, 2018

One gone, one to come

Time with those you love is precious. A not blood, not my side, but friend non the less let yesterday.
Tomorrow another friend arrives.
These are both people who when I was in the UK I didn't physically see very often but we put the effort in. And they have certainly put it in by coming here. On their own.
I'm a happy and grateful woman.

In the world of VHL that heading could easily have been about tumours! 

Trying to get the right medical insurance over here is making me appreciate the NHS in ways I hadn't fully recognised. 

Wednesday, March 28, 2018

I miss doing food shopping online

Silly but I'm missing the comfort of my habits this week.
I'm missing my ability to get what I want and need.
I can't just pop to the shops and know what I want will be there.
I rely on my husband and it feels odd.
I'm oddly less independent and it feels strange.
I just feel a bit lost this week.

Saturday, March 24, 2018

An ordinary day

Today was so simple. It was an extraordinary normal day.
Being a small part of lovely people's lives is such an honour.
Lucky me.
I'm blessed.
I enjoyed today because I was very normal.
A little bit of me was sad.
Most of me was quietly greatful for the simplicity of friendship and the luck of my place of birth.

Thursday, March 15, 2018

Hard to fall asleep on a day like today

Two posts on one day.
I'm feeling loved, unsettled, sad and proud.
I should go to bed. I should be very normal.
I should try to get on with life.

But I'm haunted by events of 22 years ago.

The day it was confirmed he was dead. And as clichéd as it sounds, nothing has been the same since.

It just doesn't go away. The loss. How could it? No resurrection planned here.

To quote a wise woman

We will both always be running (even sprinting...) to fill the void our siblings left and live 2 lives into one.

She knows. She's felt the shadow of loss and the burden that it can leave you with. But the Ying and Yang of trying to accomplish and achieve so much more that perhaps would not have seemed necessary had we just been left to be the number of children our parents planned.

Maybe that's why I'm struggling to go to bed. I remember him often. I value his memory always. But this day. This anniversary marks a shift. The balance will tip now.

It's nearly tomorrow.

Tomorrow could be just as sad.

But I'm getting tomorrow and for that I'm very glad.

Alive as long as he's been dead

My brother.
22 years.
Which of course means that from now on he's been dead longer than he was ever alive.

What should I feel?

Wednesday, March 07, 2018

Other peoples tumours

The first time it occurred to me to look up VHL online I was thrilled. A sense that it really did exist, rare but real.
Then the day I realised there was a group.
Not only was I real but there are more people than I could have imagined.
I connected with a couple of people. I'm still connected to a some.
And now it's Facebook.
But now I read about the VHL community and I know I'm not alone. I don't feel rare but I feel the inevitable.
We advise each other, we share fear and pain and we see scars. A lot of people pray for each other. That's how many justify the experience. But I'm doing a good job of ignoring my potential tumour growth. But I see each one.
I suspect we all do, see the next operation, dreading the results of the next scan.

Sunday, February 25, 2018

You can't unsee it

I don't recall who helped me see a moment of truth this week but I think it's stuck now.
Here, there is obviously and obvious poverty all around.
But the comfort I have found in the UK from thinking I'm making a difference can't obliterate that where ever I am on the planet, they will still be poor.
So what do I do?
I keep on speaking.
I communicate.
I give when I can and to people who need it.
I will

Friday, February 23, 2018

While I'm swimming he's drowning.

I feel a lazy sort of guilt right now. I'm sat reading, g&t in hand and looking over the lake. Like I've run away. Which I think I have. My mum and sister, meanwhile are at my dad's side, battling again with the fact that he's in hospital, again. Am I allowed to do this?

I am anyway.

Bad daughter.

This time I found out via WhatsApp. My preferred way of knowing he's ill again.

I tell myself, I wouldn't be there. I'd be in London. Only leave if he looked like it was the end. The real end.

I secretly said to myself today. Hold on until July dad. Let me see you one more time. I didn't take you seriously when you said it would probably be the last time we saw each other.

And what would I want from my child?

Honestly, not for her to fuck off half way round the world. But I know too, I don't want her to be trapped like my mum and sister.

And the inevitable fear and hope that if he wants to, then times up. I wonder how and if he does want it to end. I recall him acknowledging the wishes of his father. He didn't want a slow undignified drowning into mental oblivion with dribble on his chin. Heart attack. I think he got his wish. Too late for a fast exit for my dad. I wonder too if he keeps agreeing to operations so that one, finally completed the cycle. Put to sleep gently. Like so many of our dogs.

I wish I knew.

I can't ask.

When I do, I don't think he tells me the truth. And that might be because he doesn't know himself, or he doesn't like his truth.

I don't think I'll ever know.

Friday, February 16, 2018

Start of the half term

Which means I'm half way through my first year here and it's gone so quickly. It feels very normal too.
I've had a few things to worry me but not many and so far so good.
So I feel blessed and positive.
Worth noting.
Worth saying it.
Worth this short post.

Wednesday, February 07, 2018

Who can you trust.

Messages from home. Fear and distress and the wolf in sheep's clothing is being seen for what she is.
And yet I can still sense that some good people are duped by the smile and mutual loathing for another. And in some cases a drive for self preservation.
I want to be liked and respected.
I want more than anything for both to be given freely by myself to myself.
I'm predisposed to pity those I believe to be hurting. I'm built to try and protect them. And so that wolf I can see needs care, needs to be helped to see their own faults.
I couldn't be the one to do it.

Sunday, February 04, 2018

The importance of sleep

I'm sipping tea, listening to one of my favourite podcasts and thinking.
And despite the ever present undertones of anxiety and self loathing I'm happy and rested.
When I get back home, if I still feel I need it I'll tackle those two but I'm hoping my time here will continue to lessen them.
I've slept well.
I'm aware of the balance of life being so much better here. And I genuinely feel sorry for my colleagues left in the UK who are not enjoying this life style.
I've always been of the opinion that sleep is very important. The podcast just mentioned an article about it. Science has confirmed my instincts.
Sleep is easier here. Easier now.
I'm happy.
I know the ups and downs of happiness and so I'm going to do my best to endulge myself in this current batch of it.

Wednesday, January 31, 2018

Facebook and my mother

Twice in four days I've read a post from my mum that states my dad has been close to a crisis. Both times the way I found out not all was well.
These are cortisone ones.
The first suggested that all was now well.
It wasn't.
He was admitted to hospital after that one.
This next one shows a picture of my mum and dog. Not one of theirs.
It implies everything is under control.
It isn't.
I'm thousands of miles away. Trying hard not to let my mind drift to the news I'll one day hear.
There isn't anything else we can do. Or, your father is dead.

He has a mass.
He's getting a scan.
He's signed a DNR.

That's not on Facebook.


Tuesday, January 30, 2018

Going for it and not getting it

It was worth a shot, but it certainly has left me frustrated. I'm good at seeing ways to improve things.
I care about students.
Doors shut but hey, windows open.

Sunday, January 21, 2018

Hidden disability

I've started playing ultimate frisbee. We do this as a family.

I'm not as skilled as most people, I'm a little unfit at the moment and I have not quite got the hang of the rules and then there is my hidden disability. I don't go on about it. No one but my family know and they don't always remember. I'm partially sighted. And it's not a big deal the vast majority of the time. But it effects my ability to understand depth of field. And in the fast pace of ultimate frisbee I struggle.
And today it got to me. I usually laugh off not being very good but I felt got at. I didn't say anything but my lack of skill meant that some players wouldn't include me.
I don't even bother to try tennis or squash because I get frustrated by constantly picking up the ball. But in a team game I thought it would be different. My brain will learn a different way to 'see' if I'm given the chance. In roller derby this was true, I learnt to look at shadows or to turn my head just one way, or listen out for changes.
It's unlike me to give up and despite wanting to walk off the pitch I stayed until the end. But right now I don't want to go again. I feel excluded by some.