Sunday, March 20, 2011
Virgin London Marathon
I was thinking of my sister running that far and the stamina it will take, the conviction and commitment to get to the end. She told me that to get her there she will be thinking of me, my dad and our brother. There are memories that will push her through; like the time they locked down the ward after I had had brain surgery because Myra Hindley was also having brain surgery.
My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.
We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.
Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.
We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.
So please give a little because the finish line should be hope and a cure which we can’t get without money!
UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning
My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.
We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.
Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.
We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.
So please give a little because the finish line should be hope and a cure which we can’t get without money!
UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning
Friday, February 25, 2011
A note from my sister
This is what my big sister wrote "I am not what you would call a natural runner or even an enthusiastic one at that, but after experiencing a crazy moment have enrolled myself to run the London Marathon on 17th April 2011 with all monies raised through my kind sponsors going to VHL charity. Although I myself do not have the gene both my dad and younger sister have (as did my younger brother who very sadly passed away nearly 15 years ago aged 22) so have experienced first hand the physical, emotional & psychological effects it has on those who have the condition and those who love them but don't.
Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!
Nothing I can do can take away my dad and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"
Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!
Nothing I can do can take away my dad and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"
Sunday, January 09, 2011
Happy New Year
I'm no nearer to a solution for the hole in my macular, one more specialist to see but so far it's has been a resounding - "probably better to leave well enough alone" and I don't mind, I'm getting used to not having that bit of site. Now I ask my husband to be
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.
Down on my meds too. only need 5 and 5 now.
so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.
Down on my meds too. only need 5 and 5 now.
so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle