eva so lonely without u

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affected

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Joined
Apr 26, 2013
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Lost a loved one
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05/2013
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OZ
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AU
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lala land
Having a real 'missing Chris' time lately.

For some reason I went onto you tube and was listening to some music from an artist I have enjoyed since the 90's.

I played a fair bit of her music while Chris was actively dying - it went so well with candles at night to keep a beautiful feeling through the house.

I was drawn to the song I've attached (which isn't one I was playing during that time).
Incredibly I followed through to this information about her:
she is no longer able to record. In a recent press release for Real World she stated that "Singing is out of the question".In 2010 Sheila Chandra developed "Burnt Mouth Syndrome" (for which there is no known cause or cure) and now experiences long-lasting neurological pain triggered by speaking and singing. She is effectively mute, and communicates in person largely through handwritten notes and very basic sign language.

I was so stunned to think the artist I leaned on heavily as Chris was battling last of his neurological illness has been suffering her own speech battles for 5 years.

Still this song goes through my mind nearly every day since Chris was taken - Ever so lonely without you Chris

https://youtu.be/bbcKO92OGNI
 
lots of hugs to you tillie.
 
sorry Tillie, I hope I did not make it worse.
 
Thanks for the hug Dave! I needed that :)

Pete, definitely not you! Grieving is tough. I now have days in a row where I'm doing well, even have a couple of weeks straight where I function!

But the past couple of days have just seen it hit me again - from my own terrible missing of my soul mate.

It just really hit me when I found this news about Sheila and it felt so ironic that her music was such a big part of those last days, and I never knew that she had been silenced at the time.

But you PALS should know that we will take every single day we can have with you, no matter what ALS is doing to your bodies. You think it will be better for us if you were just gone - NOT SO.

Chris was my best friend, and I'm every so lonely without him, that's all and IIWII.
 
Sending you warm hugs and lots of love Tillie.
Love Gem
 
Lots of love coming your way, Tillie. I know it won't replace Chris, but you have people around the world who love you because of him and how you lost him.
 
Very beautiful post, Tillie. Thanks.
 
Oh Tillie, you say things so beautifully, and speak for all of us who have loved and lost to the monster. Thanks for reiterating that " we will take every single day we can have with you, no matter what ALS is doing to your body."
And thanks for reaffirming to me that I am not alone in my grief after months have passed. My big girl pants just aren't enough to ward off the tears that fall so easily! As always, you are my role model for making lemons into lemonade, and reaching out to others. Love you, sister. Donna
 
Tillie,
I feel your love and grief. You remind me to be appreciative of what I have even in the face of what M has lost. Your posts always bring a smile, the koalas even more....
Anna
 

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thanks tillie for all your good words and also big hugs to you. chally
 
>Ever so lonely without you Chris

proves we are human, Katrina. we never forget.
 

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Thanks for sharing this poignant post with us Tillie.

Life is full or irony...her voice soothed you and Chris when he had no voice...now her voice is mute and I'm sure she is searching for her own comfort.

I think if you haven't done it already, you need to name a tree for you and Chris. You bless us...I hope you feel blessed back!
Audrey
 
We love you, girl. Feel the hugs...
 
Hugs Tillie. It may be with the publishing of your book about to happen you are thinking more and more about your journey with Chris. I hope you know all the support and love you have from all of us! Hugs to you sweetie, steph
 
Hugs to you Tillie.
 
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