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 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.