Monday, 14 June 2010


When people find out that I have Usher Syndrome, or more importantly realise what Usher Syndrome actually is they more often than not tell me that I'm brave. Or that they couldn't imagine having to deal with it. That they would most likely not be able to carry on. That I'm an inspiration. That I must be incredibly strong. That I'm a special person. And the most odd one.... For me at least, that I must be a 'good' person.

When people say, email, text, facebook, MSN etc these to me, I find myself feeling really uncomfortable. Because I am not any of these things, not really, not especially. I'm actually a fairly ordinary, average person!

I'm not brave, I sometimes still feel like someone has punched me full whack in the tummy and winded me when I think about it. I still think to myself that it's REALLY unfair. Although I wouldn't wish this on my biggest enemy, I wish it was someone else who has it, not me. To me, this isn't brave, it isn't cowardness, but it's certainly not brave either!

I've met a young adult, not quite sixteen years old, who has Ushers Syndrome. She's brave. she puts herself out there, telling people about her Ushers, gives talks in front of numerous people and doesn't falter in getting her view of the world across!

When people say they don't think they could cope, I think to myself 'You would..... Because, well, because you have to!' You find out you've got something, you don't just give up on the world. The world, your world doesn't just fall away. It becomes different yes. But your friends are still there. Your family are still there. Music is still there. The news is still there. Ashes to Ashes is still there. Your favourite meal is still there. Dog poop on the pavement is still there. Day trips to the seaside are still there. Holidays are still there. Death is still there. Your cat is still there.

You see, the world in general doesn't change. It's still there, offering you the mundane, the amazing, the horrors, the highs, the lows, the laughs and all it has to offer. There are days when you think, 'it's crap, it's horrible, I hate it.' You wouldn't be human if you didn't, but more often than not, it's actually pretty bloody good!

Those who think I'm special, or automatically a 'good' person, couldn't be more wrong! My Mum thinks I'm special, but she'd think that regardless, she's biased, she's my Mum, it's allowed! But I'm no more special than the next person. People deal with far worst than I do. Person work far harder than I to try and make the world a better place. In that sense, I'm actually quite a selfish being!

And as for being 'good'..... Well, I was brought up well. I don't intentionally hurt people. I'm polite, I have morals and ethics, I smile at people on the street, I watch the news and feel a slight sense of despair at what goes on. But I don't actively fight a cause for the greater good, I've picked up money on the street and pocketed it, I've thought that someone deserves their rough justice for whatever it is they've done wrong!

So just because I have this condition, it doesn't make me better than the next person.

I'm flawed, simple, complexed, staintly, wrong, right, self aware, self involved, stubborn, passive, assertive and as many other opposits you can think up!

Just like you, and you..... And you, you, you, and you!


  1. Great post, thought provoking

  2. very true! so many people resort to saying "you're inspiring" - it is one of the biggest cliches out there about disability - and the media doesn't help in this "inspiring" portrayal either!

  3. You said exactly what I have been thinking! My family often tells me I'm an inspiration, but I don't really see why. I don't feel any different, other than the fact that I can't hear or see as well as everybody else. And yes, it is hard, but you keep on going because there really isn't any other choice.