As a 25 year old with DMD you're going to be moved around a lot. There's a sling on me all day, and I'll need to moved out of bed, wheelchairs and off the toilet, everyday. With all this moving, and being 'plonked' into the chair or whatever, you can feel a bit like cargo, a cardboard box full of spanners. Sometimes arms get grazed, feet get whacked and you can feel less like a person. Don't get me wrong my mum does a supreme job, but sometimes it's a bit of rush for her, having to cook, clean, pay bills, go out with dad, talk to my sister and do all the mum things.
I just get a little frustrated not being 'touched'. I'm just getting moved around. I want lots of hugs and for once to be gently touched. I ask mum for a hug but she doesn't have long to give me a hug, and I feel awkward always asking for one. It's been a long time since I had the only gf who ever held my hand (other 2 online), but 9 years on there's no-one. I'd love someone to pay special attention to me for a change, see me as Ian the guy, the artist, the poet, the writer, not Ian who needs to be moved in a hoist and has a disabilty and can inconvience someone.
The quest goes on but I just wanted people to beware of the 'Cargo' approach, maybe ask us if we want a hug, instead of us being the one asking (I mean over 15 year olds and at home not in public, you know what boys/teens are like lol). Sometimes I won't ask even though I want one because I can see whoever it is, is busy. Last thing I want to do is to become a bother to anyone.