I have a new job, well the same job but in a different school and as a result I'm sitting here with very little to do. That's because I would normally be planning for next year but I can't yet.
I'm covering an English lesson.
They are bottom set I think.
I feel normal right now.
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.
Tuesday, May 19, 2009
Monday, May 18, 2009
running running running
My sister plans to run the 2011 London Marathon in aid of VHL. I don't say it enough but she is amazing. Sometimes it is easier to notice the things that make you different from your family and by doing this you make yourself feel better or worse. She is amazing, and recently has been someone I lean on. I hope I do the same for her. I haven't felt very strong this weekend and have felt at times overwhelmed by the enormity of what dad tried to do. It seems to me that he must be in such a sad place, why else would he try. He must be watching us, his family, his friends and strangers all mourn him. He is alive but we mourn, grieving for who he was but like all grief for what we will miss. He was a brilliant man and we know that the cruelty of this disease has stolen parts of him, the most precious part being his will, his drive and ambition his willingness to live. I have taken for granted that the survival instinct we all have at one stage would carry him and me through any odds we faced and as a family we have faced so many. My fathers strength has always been quiet, he hasn't blustered his way through operations, refused to be too public about the struggles and I guess just like my sister he is ultimately intensely private.
I wonder when he will try again, not if. I sit at work thinking of him and how he might try, when he might try and I'm angry that because of the law here I can't say, 'ok dad, when shall we say goodbye. When shall I hold your hand and let you find out if you will see your son again. Say hi from me. If you get the chance let me know you're safe but don't freak me out. Perhaps a butterfly when I least expect it or most need it.' But we can't and we wait and he falls into feeling more lonely and isolated because of it. I think he has lots to live for, lots of us to love and events to witness but he has to want to live and just being a visitor here, only being allowed to watch and not participate is, I guess, slowly killing him.
I miss my dad, my real dad seems to have gone and although I love the man here that may be a habit and not for real because I'm convinced my dad would have found a way to move on from the frustration of his current condition, would have accepted some help, aids and would be determined to pick up a guitar and play it. He would get so very angry at DIY jobs, so much so it would frighten me as a child. It was the frustration at being defeated by something so simple. He would look ready to burst. When he gets angry now it reminds me of that and the fight is in him, he will carry on but then he calms down and sees the futility of his effort and that I suppose those moments are when he wants to ultimately give in. And he did give in but if you believe in the dead having an impact, maybe just maybe Conrad said, not yet dad, not yet.
I wonder when he will try again, not if. I sit at work thinking of him and how he might try, when he might try and I'm angry that because of the law here I can't say, 'ok dad, when shall we say goodbye. When shall I hold your hand and let you find out if you will see your son again. Say hi from me. If you get the chance let me know you're safe but don't freak me out. Perhaps a butterfly when I least expect it or most need it.' But we can't and we wait and he falls into feeling more lonely and isolated because of it. I think he has lots to live for, lots of us to love and events to witness but he has to want to live and just being a visitor here, only being allowed to watch and not participate is, I guess, slowly killing him.
I miss my dad, my real dad seems to have gone and although I love the man here that may be a habit and not for real because I'm convinced my dad would have found a way to move on from the frustration of his current condition, would have accepted some help, aids and would be determined to pick up a guitar and play it. He would get so very angry at DIY jobs, so much so it would frighten me as a child. It was the frustration at being defeated by something so simple. He would look ready to burst. When he gets angry now it reminds me of that and the fight is in him, he will carry on but then he calms down and sees the futility of his effort and that I suppose those moments are when he wants to ultimately give in. And he did give in but if you believe in the dead having an impact, maybe just maybe Conrad said, not yet dad, not yet.
Saturday, May 02, 2009
A strange week
I feel so sad and a bit worn out. I think I may have under played how bad my dad'sa health has become perhaps not. What I haven't said is that he doesn't want to be here anymore and so last Tuesday he tried to take his life. Here in England that is illegal and so when he refused to go into hospital (my mum found him) they had to threaten to section him. You have no doubt realised that he didn't manage it, he didn't take enough even though he thought he had taken more than enough.
So 4 days later I have left his side and come back to my home and I don't know if I will see him alive again. He wants us to get on with our lives despite knowing he hates his. So I told him I loved him and that I would see him again. I wouldn't say 'goodbye'
So where does that leave us?
So 4 days later I have left his side and come back to my home and I don't know if I will see him alive again. He wants us to get on with our lives despite knowing he hates his. So I told him I loved him and that I would see him again. I wouldn't say 'goodbye'
So where does that leave us?