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.

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Comment by cindy q on April 25, 2010 at 9:41pm
Ian, I am so grateful you shared this with us. My son is 8, diagnosed at 5. One of the first questions I asked the Doc was whether he would be able to feel being touched--I remember the great relief it was to hear the Doc say "yes!" At 8, my son asks for hugs and as a mom I hope he never stops asking--one is never to old to ask for a hug. Everyone needs them! Thank you so much for reminding us to offer and beware of the "Cargo" approach.
Comment by Ian Anthony Griffiths on April 8, 2010 at 7:08am
Thanks everyone!
Comment by JUAN PEDRO ARBULU on April 8, 2010 at 2:13am
Ian, i´m 37 father of Juan who is 5 years old, I can asure you that there is nothing like the hug of your kid so don´t hesitate on asking your parents for a hug because trust me they are so happy on being asked for one hug of their son.
My son asks me to hug him every night as he falls to sleep, I hope he keeps saying this for many years...honestly I think he will ask girls to hug him after some time, and talking about girls, let me tell you someone will soon see the man you are because men are not made out of great bodys but made out of feelings, thoughts and words.
a great hug from Peru
JP.
Comment by Rita Felling on April 7, 2010 at 11:59pm
I am sending you a hug:) My sixteen year old has reminded me often watch the toes, which get dragged a little or watch the leg which may get a bump once in a while. I encourage him to remind me I want to do the best I can for him. I can only try to understand how frustrating it can be. You are absolutely right, you are very brave, emotionally strong young men and not cargo. I myself understand what its like to have to ask to be hugged. It does not mean as much when you have to ask. The best and most meaningful hugs I have ever received were from my sons. Hugs to you and when I hug my boys in the morning I will think of all the boys with MD.
Comment by Ian Anthony Griffiths on March 27, 2010 at 10:18am
Thank you Susan, hugss. I'm sorry to make you cry, I don't mean too. I think many of us lads aren't too concerned about the process of being moving, its just the feeling of cargo that can make us feel disheartened sometimes but not always. Well theres nothing wrong with having to wait lol I try to do things when mum is free, but toileting has to happen when I need it.
Wheelchairs aren't bad thing, independence and empowerment do make us feel human again, it's all about doing whats best for the boy or rarely girl.
Hope Jon keeps enjoying his movie time :)

Take care,

Ian
Comment by Susan Rathfelder on March 26, 2010 at 7:51pm
Ian,

Consider yourself hugged! Your posts make me cry and help me to try and look at my son from his perspective. I know how I feel having to pick him up from the toilet, help him dress and undress but I sometimes forget how hard this must be on him. Just today I had to make a choice, my daughter needed to go to the bank and Jon decided that he had to take a shower right then. Well I told him he would have to wait just a little bit, we weren't going to be gone that long. He lived!

Even though I hate it when he uses his chair in the house, just that reminder, he can get things for himself and that makes his life easier. He is using it in the house more and more, he can go to his sisters and pester them until waiting until they go and pester him. :)

Jon loves it when someone just sits and watches a movie with him. We don't have to talk, just sit and watch. At 19 he's not really a touchy feely person.

Take care of yourself and keep writing, it helps all of us.
Susan
Comment by Ian Anthony Griffiths on March 26, 2010 at 5:34pm
It is quite demoralizing sometimes, any touch I get I cherish and feel sad when it's gone. MDA have got that right I think some people think we don't need touch and think we can be Asexual too. Been transferred you can be talked over or not even talked at. All through school, carers would be most concerned about their 'backs' but not bothered how I ended up back in my chair.
Comment by Veronica E. on March 26, 2010 at 3:53pm
Thanks for posting this, Ian. A big reason I'm on this forum is to store away tidbits like that for the future. I could see how you'd feel like cargo occasionally. When I had my c-section when Max was born, it was the strangest feelilng when the nurses transferred me from one bed to the operating table!

I remember reading in an MDA pamphlet of some kind how important touch is for everyone, and that people in wheelchairs sometimes do not get enough of that.

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