It’s incredible that my family have managed to claw from this disease a couple moments of beauty and wonder, in meeting and connecting with amazing people, and in doing exciting things in this campaign. I love knowing that there is something positive to be done for others with this condition, I really do.
But that is not to say that this campaign is glamorous. A lot of the work we have done in the 2 months since beginning this Trust is centered around helping others, and the rest is guided by my medical needs. Amongst radio appearances, magazine interviews, fundraisers, performances and speeches, it may seem to some that my life is about fun and publicity. This has bred a bit of resentment for those who aren’t close to me, and don’t understand. I need them to understand!
Yes, I try and go out and see friends; yes I smile; yes I laugh; yes I scoot around on Chase as though I enjoy it; and yes, I hook tubes to my face as though it doesn’t bug me anymore, as though I’m used to the staring and the feel of plastic across my cheeks. That doesn’t make me incredible or inspiring, but nor does it make me frivolous and nor does it mean that it is easy – it’s just me trying to survive this. It’s me refusing to give up being happy.
I am and remain a very sick child. I am 18, and trying to come to terms with losing the future that I have expected my whole life. A career, a family, children, saving money to travel, finding or building a home of my own – these are things that have always seemed inevitable, just separated from me by time and hard work. Now they are uncertain, and that is a hideous and scary thing to come to terms with.
So the only thing for me to do is to find meaning in the present, to try and enjoy things. Sometimes that means pouring effort into helping other PH patients; sometimes it means working hard at school; but sometimes it just means trying to be a normal teenager and enjoying socializing, relaxing and watching TV. I still need to be real, and I still need to be me.
Positivity does not mean constant cheerfulness. We are all allowed good days and bad. We are all allowed to be sad, unreasonable and even selfish. Strength comes afterwards, when we pick ourselves back up, dust ourselves off and go back to doing what needs to be done, and with some semblance of grace… because underneath it all, we have a tiny glimmer of hope, that – just maybe – it might all turn out ok.
For me, positivity is that glimmer of hope.