I’m shaving my hair off to raise money for the MPS Society. People tell me I’m brave, but I’m not.
I’m doing it because I feel like I have no other choice. I want to raise money to ensure future research into these horrible conditions, and shaving my hair, though unpleasant, is the easy option really. If I was brave I’d do something I hated, like running, or I’d jump out of an aeroplane.
When I started writing about our new life with Hunters, it was a private diary and I used it to blurt out all my innermost thoughts. As a blogger it’s easier to suppress the difficult emotions; to portray myself as a better person. But I made a promise to myself to be honest. So here goes.
I want to raise awareness of MPS, and shaving my hair will certainly have an impact and make people notice. But also I know that it will be me who is noticed. So am I being attention-seeking? Quite possibly. As a life-long introvert that is not something I normally crave, apart from when on stage. But right now, I feel desperation sometimes to reach out to people – to grab them by the arms and say ‘Can you hear me? Do you understand? This is what we’re living with.’ I want their care and concern. I want them to talk to me, to ask how we’re doing. Without this attention, I feel almost as if I would disappear from view. Not waving, but drowning.
People tell me that I’m brave for facing this condition the way I am. I can talk calmly about its causes and life expectancy, make light of it with, ‘It’s all pretty pants!’ But when I see pictures of children further along in their disease progression, I know that one day it may be Pudding in a wheelchair; when I think about the details, I know that there will come a time that he will no longer be able to swallow safely and will have to be fed through a tube; and when I see posts from mothers who are already mourning the death of their child, every part of me thrusts away the thought that one day that will be me. At those moments I am not at all brave. Just very, very scared.
I cling to the hope that he will get on the clinical trial, that the new treatment can halt brain involvement, that gene therapy will provide a longer-term answer. But on an entirely selfish note, I dread the continued trips to Manchester and further disruption to my normal life. So when people use the ‘b’ word, I feel even more of a fraud than usual.
But perhaps, just perhaps, I’ll feel a little braver when I hit ‘Publish’ for this post….