Those actions, as far as I think they were referring to, were to be there for a friend who needed some unconditional love.
Monday, July 24, 2017
Dubious and misjudged?
Those actions, as far as I think they were referring to, were to be there for a friend who needed some unconditional love.
Sunday, July 23, 2017
The residue of pain
Term is over, and so to is my time at that school.
I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so many, there were key staff who made me feel completely disposable.
While there I did so much, helped so many and because I didn't have quite the same vision, the same sense of urgency I was rejected. That's how I feel.
Three years.
I expected to be there so much longer, I felt part of their #family. Until I was clearly the black sheep.
Lessons I should try and learn, (but never seem to,)
1. don't rush back after surgery. For a while, people are impressed, but often, if your pain and disability aren't seen, then they don't exist for others.
2. Be careful who you trust
3. You're forgettable
4. Your leader needs to be morally aligned to you.
I'll grow from it.
Now I need to wash that away. Move on and be grateful that I could make the difference, I did.
Next adventure.
Tuesday, July 18, 2017
10 years of love
My little girl turns 10. She is my joy and my heart.
When people discover I have VHL and that it's genetic they often ask... And your daughter?
The relief I see in their face is sometimes overwhelming. 'I know' I say. 'I'm not sure if I'd be able to cope if she had it'
Or my other response 'we had her tested at 3 months, best day of my life knowing she didn't have it'
Which leaves me thinking how awful it must be to have children with it, and reminds me how awful it is to have it.
I'm bargaining with fate, asking for 2 years please, is that so much to ask. Two years of tumors control. I can't even ask for tumor free. That's not something I can ever hope for.
I'm a defect after all.
But if the universe could give me the next two years (four would be fabulous) to have an adventure, to treat myself and my family to a break from VHL, that would just smashing, thanks.
What will I give in return?
Saturday, July 15, 2017
Forum or not to forum
To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone.
But today (and others) it doesn't seem like a good plan.
I don't want to see the potential problems today. I'm fed up with the constant struggle I find myself in with the never ending fear of 'what next' what else can go wrong.
We're trying to escape...
I might silence those for a while to help me do a better job of pretending everything is fine.
All is fine.
Sunday, July 09, 2017
A genetic defect
That's me
Flawed
At a cellular level
Moral too
Aren't we all
I fight an inner struggle that I imagine is familiar to all of us who have the privilege of wealth, comfort and time. I don't like myself. I don't like the way my body fucks me over.
I don't like how much I dwell on the negative things I do and say.
I'm struggling to forgive myself.