An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.
Monday, January 21, 2019
Letters to my dad
Sunday, January 20, 2019
Sad and angry
I've been both this week.
News that a friend was suddenly dead and by suicide was hard to take.
I would love to be at the funeral as I know thev love that works pour out from everyone.
Her life had had so many difficulties, and some of them so close to my own experiences that she just got me.
We meet via a choir and when the choir spilt we went to different ones, but not once did that mean we didn't respect each other.
We became friends because she was open to me, open to learning about me and I her. That's what friends are I guess.
She knew what it felt like to have a body that fucks you over.
She knew what it felt like to be in hospital while you're children observe all that you're going through.
She knew the value of psychotherapy.
She knew what being betrayed felt like.
She also knew how to fight on. I can only guess that the fight became too much or that she was taken over by the pain and fear of depression.
I'm so sad she couldn't stay with us. I'm angry that she's gone because I don't want her to be. I want to hike up that bloody hill and see her next time I'm home. You take it for granted people will be there. And these moments remind you that won't always be true.
So I've been angry. The universe has pissed me off.
Saturday, January 05, 2019
A list
It was before my brother died. Then I carried on doing things.
In a very rough order...
School shows and local Am dram
Learnt judo for a while
I sang songs in assemblies - composed by me and my mate
Orchestras - lots of them
Local choirs - with solos - lots of them
Art exhibitions
Sang in church - solos a lot
Played in music competitions and then as an adult was a judge in the same competitions
Started a youth club
Representative for East Anglia youth assembly for the Roman Catholic church
Joined bands - backing singer
Fronted my own band - Kismet - sang covers all over Norfolk and Suffolk
Sang our own original stuff
Sold my own art - lots of it
Recorded a CD single
Went to art school
Worked in a young offenders prison - helped direct a production of Cinderella
Did a degree
Did a PGCE
Did a masters degree
Did an NPQSL
Spoke at City Hall London to advocate for better education around domestic violence in schools
Lead a teacher Union rally and spoke to the assembly about why education needs to change
Wrote some books - unpublished
Advocated for several young people
Performed in a few murder mystery spoofs
Moved to Africa
None of these things are about VHL