Fed up of people telling me how to feel, how to be positive.
Sometimes I am, hiding my feelings under that thin veneer of a laid back
jokey positive person.
Other times I'm in a depth of darkness, lost and fighting my way out of

How do I really feel, I'm dying to be free of this wretched body,
I wanna do things, play guitars, properly hold someone close, make love to
someone special, go for quiet runs in the park, stand in a tranquil setting
putting real paint on a real canvas, eating steaming bags of fish and chips (fries),
driving fast cars, visiting the world. I don't want to do these things in
an alternative way or do something else. I want to eat solid food the normal way
being able to swallow it as most of the population does. Blended food might taste similar
but it doesn't replicate crunching or biting your way through something. Food is just energy
now, no fun in it. I have to choose my meals the day before I eat it, no spontaneous 'oh i'll
have that for a change'. No cakes, No sweets(candy) Nothing naughty but nice.

It gets me down but I have to carry on but I've had enough. Just wanna cry
all my fears out but gee I can't even do that right. I know I can do stuff and I cling on to that but even what I can do is getting harder
how do I cope? You know sometimes I'd just like some sympathy instead of constant advice that confuses me, I know people wanna help but sometimes you just want a hug and nothing else.

I instensly dislike DMD.

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Comment by Ian Anthony Griffiths on June 9, 2010 at 10:19am
Thank you Terry :)
Comment by Terry Porcaro on June 9, 2010 at 10:07am
I agree with you Ian. This DMD crap is 100% not fair. Your words were so open, honest and touching that while I was reading it, I was wishing I could move Heaven and Earth to make things right for you. The fact that you can write this all down and share your feelings shows such a depth in spirit. I admire you greatly that you can reach out of your depression to share this with us. God bless you Ian.
Comment by Lisa Groeger on May 27, 2010 at 11:28pm
thanks for sharing that..I as a parent have figured that out with my 15 year old son. He doesn't want me to give him advice, ideas of what to do to make it better. Some of the time he just wants to be pissed off, mad, upset, crying and say "It's not fair!!!!" So I sit there saying yes, you are right it's not fair and give a hug.. all of you deserve that!! You are brave and honest to be sharing how you feel. It really is hopefully good for you in a way and helps the rest of us to understand what our boys are thinking when some of them are afraid to verbalize it..Thank you!
Comment by Ian Anthony Griffiths on May 27, 2010 at 8:58am
Thanks everyone, hugssss
Comment by jenn on May 27, 2010 at 8:21am
i also hate duchenne, there is nothing nice at all about, i dont believe there is a reason in the world for boys and men to suffer this way. i am sorry for you, and for my own two sons, austin who is getting weaker by the day, and max who can still run and play and cannot fathom what is to come. how can you not hate it?
Comment by lisa burke on May 27, 2010 at 8:14am
If I could take this from you I would. You mean so much to so many.
Comment by Ann Avery on May 27, 2010 at 4:43am
I wish I could give you a hug and remind you what a valuable person you are.

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