MY IDLE RAMBLINGS

I have Episodic Ataxia Type 2 & Familial Hemiplegic Migraine, which has in the past caused me to appear unconcious..... The last time this happened was at Christmas following a surgery.....

I wrote this just as a way of getting things off my chest.....

WHEN THE LIGHTS ARE OUT, I’M STILL AT HOME

When the lights are on you know I’m at home
There’s life in my eyes
A smile on my face
Arms that move for that loving embrace
When the lights are on you know I’m at home

When the lights are on you know I’m at home
With my legs that wobble but can get me about
A voice that I can call with, or scream or shout
Sometimes just a whisper,
but you’ll always know that I’m about
When the lights are on you know I’m at home

When the lights are on you know I’m at home
A tongue to taste the beautiful fruits
Maybe tears in my eyes through laughter or sadness
With hope in my heart with God’s loving gladness
When the lights are on you know I’m at home

When the lights are on you know I’m at home
With sight in my eyes to see your smile
A nose to smell the sweet aroma in the air
Ears to hear the beautiful morning dawn chorus
I don’t take anything for granted, and nothing will bore us.
When the lights are on you know I’m at home

But
When the lights are dim & it appears no one is in

I am here

The lights may be out but I’m still at home
Machines may bleep and buzz around me
The life in my eyes may be faded or shut
The smile on my face may have melted away
My arms may be still, no room to play
I can hear you, although I can’t say
Come talk to me don’t leave me alone
The lights may be out but I’m still at home

The lights may be out but I’m still at home
My legs that once wobbled are now quite still
My voice once a whisper, now silent as a mouse
Now lying still dreaming of life in my house
Come talk to me don’t leave me alone
The lights may be out but I’m still at home

The lights may be out but I’m still at home
No ability to taste the wonderful foods
No tears in my eyes through laughter, now just sadness
But the love remains in my heart of God’s loving gladness
Come talk to me don’t leave me alone
The lights may be out but I’m still at home

The lights may be out but I’m still at home
No sight in my eyes to see your smile
Maybe a glimpse, just once in a while
My sense of smell is now just a memory
Come talk to me don’t leave me alone
The lights may be out but I’m still at home

The lights may be out but I’m still at home
I may rest & snooze for some of the day
But when I wake, please notice I pray
Come talk to me don’t leave me alone
The lights may be out but I’m still at home

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Replies to This Discussion

Permalink Reply by Kati on May 26, 2010 at 11:04am

Thats brilliant and really moving!

How have you been doing? Did you sort out a more portable communication solution than your PC? My iPad is due to arrive this week and I will be installing Proloquo2go and doing a review.

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Permalink Reply by Dawn Wooldridge on May 26, 2010 at 3:38pm

Hi Kati,

I've not been too bad thank you, trying to keep positive & enjoying the sunshine....

I'd love to hear how you get on with your iPad.... no I haven't sorted anything more portable for myself yet.....

Hope all is going well for you

Dawn x

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Permalink Reply by Michael on May 27, 2010 at 1:09pm

Hey Dawn!

Great poem in my humble opinion. It seems to me that the poem shows an honest acceptance of how you are, a realistic portrayal of how a 'condition' can be sorely misunderstood and a kind of positive hope that some can easily miss!

The poem title immediately made me want to read more as I (as I suspect most will) got the reference to the popular saying straight away.

It may be nice if you could show us any more of your works - maybe in the 'Showcase'.

Any way, thanks for sharing.

Best regards,

Michael.

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Permalink Reply by Carol Gow on May 27, 2010 at 3:14pm

Hello Dawn
Your poem is lovely, such a pleasure to read.
I belong to a womans network, can I have your poem read out - with credit to you of course. I should like to think it would help them to understand.
Regards
Carol

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Permalink Reply by Dawn Wooldridge on May 28, 2010 at 12:37pm

Absolutely Carol,

Thank you that you think it worthy of sharing.

Dawn x

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Permalink Reply by Kati on May 30, 2010 at 2:10am

Hi Dawn

I did my review of Proloquo2Go on my blog yesterday it shows some screenshots I have done on mine so far.

http://katilea.wordpress.com/

My next blog will be about 'Physical Accessibility on the iPad in general for Fine Motor Difficulties'. I havent started that yet, I have to get my camera working to take some shots of the stylus holder I made for managing the smaller menu's in general settings.

Just having a lie in cos I'm knackered after early starts all week. I'll try and get the next blog done in the next few days.

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Permalink Reply by Dawn Wooldridge on June 1, 2010 at 9:37am

Hi Michael,

Thank you for your comments regarding "MY IDLE RAMBLINGS"

This isn't something I usually do, but after a bad experience in hospital at Christmas, following surgery, I found things hard to deal with... My husband suggested I put something in writing to help me cope.... "my idle ramblings" were the result.
I did try to put this in the showcase part of the site but didn't know how to do it, despite my efforts it came up as a discussion.... LOL... I can be a real numptie navigating these sites...

It has been encouraging to read the comments of others reactions to this.....

I have been looking for a new hobbie which I can actually do...... maybe writing more maybe a way to go ...

Dawn x

Michael said:

Hey Dawn!

Great poem in my humble opinion. It seems to me that the poem shows an honest acceptance of how you are, a realistic portrayal of how a 'condition' can be sorely misunderstood and a kind of positive hope that some can easily miss!

The poem title immediately made me want to read more as I (as I suspect most will) got the reference to the popular saying straight away.

It may be nice if you could show us any more of your works - maybe in the 'Showcase'.

Any way, thanks for sharing.

Best regards,

Michael.

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Permalink Reply by Carol Gow on June 22, 2010 at 3:57pm

Hello Dawn
I gave your poem to the lady that runs the wives group. She read it and thought it was beautiful. She said what happened should not have happened. Margaret (that's her name) is going to read out your poem and tell the group all about you. We had an interesting talk about Ataxia. I will keep you posted.
Regards
Carol.

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Permalink Reply by Dawn Wooldridge on June 23, 2010 at 7:22am

Wow Carol thank you & please thank Margaret too that she thinks it worty of sharing.... I hope it helps to raise awarness ataxia & gives way for conversations....... but also for EA2 which is the type of ataxia I have, I also have Familial Hemiplegic Migraine which often goes hand in hand with EA2...

Thank you for you interest, I'd love to hear how the group receive it....

Many thanks

Dawn x

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Permalink Reply by Alison on June 24, 2010 at 3:55am

Oh how true. What a poem! I get so angry as I am always saying ' I'm not stupid' The lights are on but things don't look that way to many. The brain is there and works even if other parts don't. Things are different for all of us. I can see this for my own reasons and like it and you can see it from yours.

Take care
Alison

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Permalink Reply by Dawn Wooldridge on June 24, 2010 at 3:58am

thanks Alison, How are you I hope you are well xx

Alison said:

Oh how true. What a poem! I get so angry as I am always saying ' I'm not stupid' The lights are on but things don't look that way to many. The brain is there and works even if other parts don't. Things are different for all of us. I can see this for my own reasons and like it and you can see it from yours.

Take care
Alison

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Permalink Reply by Louise Davy on August 14, 2010 at 9:02pm

Hi, Dawn

I really loved your poem - it was very moving - although I don't have the FHM side of EA2, people often treat me as stupid when I am having an attack. It was very well written!!

Hope all is well with you

Louise D xx