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Old 06-17-2017, 05:12 PM   #11 (permalink)
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Very compelling story. Thank you for sharing.
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Old 06-17-2017, 06:04 PM   #12 (permalink)
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I read her book, "Life Music: Lessons Learned at the University of Catastrophe" and continue to be blown away by her courage.
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Old 06-17-2017, 09:24 PM   #13 (permalink)
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You have such incredible gifts in writing and courage. Thank you so much for sharing with us. I have just bought your book too - thanks for the tip Mfmst.
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Old 06-18-2017, 06:50 AM   #14 (permalink)
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Thanks for your support. It means a lot to me. I'm humbled and honored by it.

Molly, disability changes your physical being. It changes your physical experience of being in this world, while you struggle to remain yourself. What a difficult process it is to transform into a stranger's body, while hanging on to who you are. And the hard part about becoming disabled, what no one else sees, is that your relationship with your inner self changes, and not always for the better.

One of the cruelest things to say to someone who is struggling with progressive illness is, "What doesn't kill you makes you stronger." Because after deep suffering for decades, a deeper truth emerges. "What doesn't kill you can hurt so badly you wish you were dead." When I lost my cello, I wished I was dead. I had nothing to live for anymore. Disability killed my "self" and I was a hollow shell. Giving music to Hannah allowed me to grieve, and reach forward again. I am grateful for Hannah's help.

To add progressive disability into your life is to become acquainted with perpetual grief. Fall apart, rebuild, fall apart, rebuild with less skills, fall apart, rebuild with even less skills, fall apart... To witness this process in your body is a profound challenge.

I write about these things for three reasons.

1.) I write to explain this process to myself so I can understand what is happening.

2.) I write to explain this process to people it is not happening to in order to build their understanding and compassion.

3.) I write to explain this process to people who are watching disability change their bodies, feel the same things I feel, and cannot find the words to speak it. I write for you to sigh and say, yes. I write to give you language, because language is how humans understand this world.

We were created for stories. Every life is a story. Through the sharing of stories we can build into one another. We all need help to stand, not to fall. Thanks for the feedback on my essay. It lifted me.
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Old 06-18-2017, 05:53 PM   #15 (permalink)
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I absolutely love this post (and really your entire blog) Thank you for sharing. As I navigate the world of disability through my son, it is a heartbreaking road, with far more struggles than successes. Reading uplifting things like this is such a comfort.
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Old 06-18-2017, 08:39 PM   #16 (permalink)
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I follow your blog and the writing is amazing - I am in awe and inspired. This story brought me to tears. Thank you.
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Old 06-19-2017, 07:32 AM   #17 (permalink)
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Chinchillafuzzy,

Navigating disability is made more difficult by our society's obsession with looks, health and fitness. People with disabilities are often outside of that box. The stories on TV about disability are often about triumph. The paralyzed kid who walks across the stage to get his diploma, and everyone cries and cheers and...

And what about the kids who work just as hard and still can't walk across the stage? And they have a bitter knot in their stomach that twists harder when they see what they can't have? Oh, well, in that case, they can be the bitter and angry disabled person. TV shows have that character, too. And usually their is a dramatic scene where they loose their bitter edge. They have a good cry, and then a doctor swoops down with magic treatment and poof all better. Everyone learned a lesson about humility. Isn't that sweet?

Or, there is the plucky happy go lucky, nothing upsets me, look at me smiling like a perpetual poster child, disabled person. Aren't they inspiring? No, they're in denial.

Grr.

All these labels, all these boxes, do not leave room for reality. Sometimes disabilities increase and don't decrease. Sometimes doctors have no idea how to help. Sometimes, bitterness is a normal human reaction to a cruel reality.

I live in a world without magic, and doctors aren't going to save me. My body is falling apart with me inside it. And I get to watch it happen in slow motion as relentless as the tide. To live with, and around disability, is to spend your days trying to make sense from nonsense.

When you and your son have a bad day, remember this: living with, and around, disability takes an extraordinary amount of commitment and effort. An ordinary person, trying to do the extraordinary, is going to struggle and fail sometimes. Some days your best will leave gaps that you wish you could fill. Disability is like that. Take a breath, take heart, you are never, ever alone. Gentle hugs.
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Old 06-19-2017, 07:36 AM   #18 (permalink)
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You have touched me deeply. Many of us struggle and even a small amount of hope is HUGE! You have given a LARGE amount of hope and inspiration.

One day I will share a little of my struggles and success....

God Bless you, Marie!

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Old 06-19-2017, 07:52 AM   #19 (permalink)
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Cathy,

Let's go up and up and up, together, because together is better than alone.

You've all inspired me to keep writing and not give up because, "No one is reading my blog." Now that I know I have readers, I'm inspired to write more, so thank you all right back.

The goal is to create dog training courses for service dog/esa handlers and essay collections for people who need a lift, so I can quit my soul sucking job. Ah, dreams.

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

- Langston Hughes
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Old 06-19-2017, 08:19 AM   #20 (permalink)
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I will add my voice to others in saying thank you for everything you write and share. You have truly opened my eyes to a world I knew little to nothing about.
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