Hey Rosetta We made a pact AMV: Dying - I lived!

I lived!! The 2.5 year visual record from onset of an incurable disease to now. A video of the ups and downs of fighting against a very rare disease which stole mobility, then lungs, heart, sight, swallow function and more. With constant mechanical assist with oxygen, heart and other human caregiving, I live on. My partner and I are still together. It is a 'knowing grin'.

To my partner of over 16 years: we saw the lava, we did the 10K's, everything people said was impossible, you were there, knowing the risk, seeing me spit blood and letting me do it anyway. If you weren't beside me, or waiting at the finish line, there would have been no point in finishing. For without you, a mountain is just a mountain, a forest just a forest, not a secret joy we shared. We made a pact, you and I. And because of that, I lived. I will keep living every day, because now, every day IS the finish line.

Thank you to Hey Rosetta! for the written consent to use this song. I own the usage of all images both personal and those used for artistic purposes. Thank you also to the rare disease and caregiver support groups and other support online and off.




Lyrics:

You,
You and I made a pact
A deal that as we lay dying
We'd think about eachother then
And smile as we're taken in

I,
I listened like a little child
To the story of your earthbound pilot
he plummeted so violent
A parachute not opening
And rushing to oblivion
He broke into that knowing grin

And I,
I think about that a lot
Cause a lot is what i've not got
And a smile is what I least expect
In the clutches of this darkness

You,
You I was surprised to hear
Your birdsong velvet in my ear
The phone broke its silent stint
But I pulled the cord and I needed it
You billowed like a bowl of silk
And slowed me from my ruining

Category:

People & Blogs

Tags:

• wheelchair female
• disease
• wheelchair girl
• Elizabeth
• Hey Rosetta!
• Flashpoint
• joy
• living
• racing
• We Made A Pact

[Jessthenurse]

Does Elizabeth have ALS

[mpshiel]

@Jessthenurse No, it is a disease called AAN. It shares many aspects with ALS but causes neuropathy secondary to the autonomic failure both primary and secondary systems (lungs, heart, blood pressure, veins, circulation, vision, etc)

[WILLxARTHUR]

Beautiful thank you so much for sharing this with us

[dakotablue52]

I've only just found your videos-and they are so uplifting. I can see the ups and downs. I can see the challenges you took on, as well as the part that is the handicap you struggle with. I can see the love. I can also see and hear the lyric and musical sounds that strike your heart. What a wonderful thing to see you in the woods, on the trails, the summits.

And the rich introspective life lead. Thank you for sharing it with all of us!

[xxshotxx1]

You're an inspiration. Please never forget that.

[Jessthenurse]

Does Rosetta have ALS?

[ladypearlknitone]

Thank you.

[peterpauliepan]

after following you and reading you're blog, it's bittersweet to watch because i know what i feels like the day after in bed but i'm glad that you're taking the time to savor the sweetness that you've been able to have Despite the pain. you are truly, EFM.

[letshavepie]

Your love and appreciation of each other is beautiful. Thank you for sharing your video and thanks to Hey Rosetta! for letting you share their song.