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.

Wednesday, January 17, 2018

Being a little inspired by missing home.

I felt terribly homesick this morning, this has been brought about by my mother's insistence that I come home this summer followed by a dream about going home but not being able to see them. Mum and dad both know they won't realistically be able to come here; not together. I miss my family being close.
I cried a few small tears and held my daughter. She recognised my pain and immediately held me, tight and offered words of comfort. She is fast growing into an emotionally astute child. I see how much she yearns to protect me and keep me safe. She knows, as I do that that is in her arms I am my happiest and  we both know our relationship is better for the move we've made. Here we spend time with each other and I know it was in vogue to say this some time ago but it is quality time. We talk and communicate. I'm a lucky mum. She's becoming more and more independent and yet we're so much closer. Next academic year she'll be in my school. I hope the teenage years don't get in the way too much.

Accompanying the fleeting feeling of missing home she saw the importance of saying she too wanted to go home, for a visit. I don't think she really meant it. I get the feeling that Malawi is home for her in a way I hadn't imagined possible in 6 months. The UK is my home, but Malawi is growing to be home. Where she is, that's always going to be where my heart is.
With this a message from home reminded me of the love I have in the UK too and how secure my place there is. He makes me feel respected and valued with just a few sentences. It was the bolster I needed to get up and get on with the day and to remind me I can be an inspiration here too.
I hope so much that the most recent opportunity that has presented itself comes to fruition but I know that of this one doesn't, something will. I'm a seeker, I look for life in each encounter.

I'm happy to give that credit to VHL today.

Plus I should be able to get an MRI if I go back! ONe worry out of the way oh and I'll have amazing cheese and chocolate orange and buy a bra!

Sunday, January 07, 2018

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 in Malawi 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.

Sunday, December 31, 2017

Good bye 2017

You've been a strange year.
In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I was rotten.
And I'm about to host a party where over 30 people I didn't even know 5 months ago are coming to celebrate moving into 2018.
Who knows what the next year will bring but this year has proven I am a warrior.

Happy New Year.

Thursday, December 28, 2017


My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be deliberate. A hug, so innocent and powerful, and creepy.
It's only a few years old but already dated.
Hugs for boys and hugs for girls.
Hugs for comfort.
Hugs for memory.
Hugs for plot.

And as I watched, crying silently and feeling the closeness of grief my husband asked why I watch if it makes me depressed.
"It doesn't make me depressed."
"Wrong word."
"It pulls up the saddnes. I feel sad."
And a moment of truth sounded.
"I'm this close to saddnes all the time."
And unsaid... That's why I have to keep busy, that's why this helps. It's controlled.

And the hugs got to me. And another penny dropped.

My dad can't hug me. I don't remember the last time we did and when he could.
We hug him. Gently and carefully because it can physically hurt him. This fucking disease has stopped my hugs with my dad.

Saturday, December 23, 2017

My boys

How do you write about them?
My boys, the ones who got mixed up in it all.
One definitely missing and one definitely dead. My boys.
I wish I was still able to try and be part of a solution. But what a joke. I've got more chance of saving Malawi.
I think of them and I worry about them.
Here I can do nothing.
My boys.

The email

Dear hammer legends and woe defeaters 

I wrote to you about 18 months ago thanking you for being part of what saved me from the horrible tedium of my hospital stay which preceded have a rather nasty brain tumour and troublesome cyst removed. That was when I became a PCD. It was my husband who put them on the tablet and while I lay in deep fear and unknown you helped me. It's hard to explain how unpleasant the experience was and I have had a few hospital stays in my time due to the disease (VHL) responsible for the brain tumour in the first place. My then 8 year old daughter and ever strong husband must have been to hell and back but we all fought the good fight and thanks to the amazing NHS and the team around me I survived. Elis you replied and that was so kind of you, partly you were inspired by the odd chat you and my husband had had a test gig of yours about politics. 

Naturally the story continues, the return to work following such a difficult surgery was okay at first but, despite being used to the hideousness of VHL, this one shook me. As always my husband did what he could, being there, reassuring me, putting up with my lows doing things like booking us tickets to your gigs as he knew it would cheer me up, it was then that I had my first real understanding of darkness I had heard you and many listeners experience. Being a practical sort I started seeing a psychotherapist, I almost started anti depressants (they didn't work for me) but what really changed and the reasons I'm writing to you again is that one morning, while sitting in tears, trying to find the strength to get up and get on with the day my husband changed our lives. He made a decision for us, all three of us to live our best life and stop the cycle we were all in that meant we were miserable. He held me and said, 'that's it we're moving abroad.' 

And so after CV writing, job applications, skype interviews, house renting out, resignations, freight filling and emotional farewells I am writing to you from Malawi. I am back to being a drama teacher, absolutely loving it. My little family is spending more time together, less stress and the darkness and nagging anxiety I couldn't shift before doesn't get much chance to infiltrate the overall sense of calm and happiness I feel. 

I know you won't be able to read all this out, but I wonder if on the podcast you could give a shout-out to your PCDs in Malawi (You definitely have 3, Ayla is 10 now and she thinks you and Adam Buxton are the best) and if you do, could you let Asher know he is the most amazing partner who has saved me by ensuring we are all living our best life and that I love him and appreciate and value everything he has done and continues to do. 

Thank you for the honest and fun radio, I'm always delighted when I hear you're doing drive time. 

Saturday, December 16, 2017

Swimming with the sound of hippopotamus

I've never had a December like it. Today I'm living my life.
And I have been as much as I can for as long as I knew I had to.

Malawi is a sensational mix of the glorious and terrible. It's easy to forget the abject poverty around you and get on with it.

Monday, December 11, 2017

Christmas in the rainy season

The images from home are full of snow and here we are in the rainy season. A huge contrast and reminded me of the contrast in my Christmas list year too.
The darkness of life a year ago was not being covered with a layer of snow. It was cold and grim.
It's not perfect here but it is so much better. It's brighter and we're all happier.
I've made a couple of real friends here already. Proper ones who are mine now. They are on my list.
One of them justs gets me and last night gave me just what I needed. A shoulder and a stern reality check. She gave me the strength to get up and get on.
I'm so lucky. To travel this far away from home is a risk and I miss my friends so much at times. To have made a new one here that I know will help me and I'll help her is wonderful.

Friday, December 01, 2017

In a show

I'm in a pantomime. I'll up date you!

Tuesday, November 28, 2017

Probably nothing

The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But I'm still a bit worried. The NHS feels very far away.
I haven't had a reply from anyone about MRI scans here and yesterday a colleague was complaining about the terrible insurance we have.
I am good at pushing this all to one side. My significant other is the world champion.

Monday, November 20, 2017

The confession

I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change that.
But VHL has its own way of making things stressful and for the last few days I've kept that all to myself. Until tonight. Tonight I confessed.
In the safety of his arms and while we were being honest I told him.
I have a new symptom. I'm scared. I want to be in the safety of home. It's not my imagination. This could be serious. This could fuck everything up.
And I cried.
Then we talked strategy.
Then we looked up neurologists in Malawi.
Then we looked into the medical insurance.
And then we had a beer.
Who needs the use of their arms?

Me, me, I do. *puts hand up in the air.

Monday, November 13, 2017

I just can't get to sleep

I'm not going to post this straight away. But I can't sleep.
I've let someone I care tremendously about know this blog exists and he's reading it.

I can't get to sleep for all sorts of reasons but it started because I drank too much and I miss my brother.
My daughter was asking about him today.
I can't know him anymore. He's almost been dead as long as he was alive but as his little sister, well, that passed long ago.
He knew me before I knew me.
He'd seen and understood what my feet were long before I stood on them.
He shaped me without intending to. He was my big brother.

I wonder if I seek that gap out.

And I'm sad. I miss who he could have been.

To be or not to be

A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hurt. How should I do it. That was before my brother died.
You'd have to be the most heartless person in existence to do that to your parent's twice.
No,  I keep on with the to be.

Despite the agony.

Saturday, November 11, 2017

Living your best life

There were so many reasons to move to Malawi. Today I sat with someone I've only known a little while and confessed to a snobbery I have. We talked about it, he listened and I felt sad that I'd left those vulnerable kids behind.
But in my heart I knew I had to. To save me and in turn my marriage and my child.
I had to find joy again.
I was no use to anyone with darkness knocking at my confidence. I can blame many things, people and naturally myself for the level of depression I experienced but that doesn't help.
Change did.
Big choices, small ones, brave ones. They made a difference. Love and support.
I am so pivileged.
I am lucky despite the troubles I have faced.
I was created with a genetic defect but I know gave me a strength that have helped me not just survive but thrive.