Why Me?

[Guest guest]

I guess my question was WHY NOW?, after all these

years. Not neccesarily why me? I thought why MY son?,

when apparently he was the only one out of my Dad's 14

grandchildren. And who knows it may be lurking

somewhere in any one of them as it was me.

Susie - I know what you're saying. I have 2 sons who show signs of CMT. I look

at my sister and her kids and see signs there. I hear about second cousins who

also show signs of 'problems or deformities' and I think this thing is like a

dreadful curse that is spreading through my family and then there are family I

don't know about.

It goes on.

Why me?

Yes I'm the worst affected.

So why me?

Because although 'God' has taken so much from me he left me my mouth (or gob)

and a brain that reasons and asks questions and a determination to change things

- even if that is only getting a diagnosis to prevent future members of my

family being misdiagnosed and abused as I have.

But I hope that in some way that when my time on earth is over - I will have

made a difference not only for my family but for everyone who has CMT.

Science and medicine is moving forward faster now than ever before and although

for us there isn't a cure (but there is hope of making our lives easier) there

is hope of a eradicating this disease in the future - and hell kid that's what

I'm hanging in for. I will always be in pain - I have all my life so in a funny

sort of way I'm used to it but shouting about it, being part of support groups

like etc not only (I hope) helps people now but also will help change the

future.

I strongly believe in shouting, highlighting our condition and talking to people

about it, go for your local newspapers - I have. Tell people about CMT and tell

how it affects your life and keep on because if nothing else they'll listen just

to shut you up.

You really need to read Paolo's book 'Rehabilitation Management of

Charcot-Marie-Tooth Disease. I read it and although I knew it didn't offer me

any hope I know it will help my boys.

Sometimes we have to look beyond us but use our experience - our question 'why

me?' and turn it into something positive for those we love the most.

Love and hugs

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller