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 Roy Yamamoto on February 21, 2011 at 3:39am

Hi, Dawn, Are you sure your stomach problem is unrelated? Another person had back problems like me, and I posed a question if the weak disc might have been due to my undiagnosed ataxia at the time (that is, which came first?)

At least you have your family to help - too bad the nurses didn't talk to you. That's why I visited my father often - to show the nurses that I cared, and helped to interpret his actions.

Thanks for asking about my back. I stayed in bed for 2 days. It seems to be gradually getting better, as the muscle spasms seem to have abated. I am still sore all over, and trying to stretch things out. I think everything was out of kilter, and hope I feel strong enough to do some housecleaning.

It's good you can do things independently.