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Why Chronically Emily?

For so long I've been floating in a space of: Am I am healthy? Am I sick? Is chronic illness a disability? Will I 'get better'? Am I ready to plant myself firmly in the disability space?

Living with invisible disability is a tricky space for me. I look fine. I fluctuate in my wellness scores--at my worst a 10, at my best a 60.

But functioning at 60% of a healthy person still leaves me, well, disabled.

This year I turned 46. I also marked 23 years of living with chronic illness. Half of my life.

When I created my first blog in 2005, A Dancing Light, I was in a very different space. I had only been sick for seven years. I didn't really understand disability and all that it entailed (I still don't.) The title captured what my spirit had to say, even though my body could no longer dance--which had been my most joyful and cherished form of creative expression before my illness. I held tightly to Martha Graham's words, "Dance is the hidden language of the soul."

Now, the title feels a bit full of toxic positivity. And it doesn't really capture what I want to communicate at this point in my journey.

I realized how empowered I felt in the disability space, how passionate I am about accessibility, acceptance, advocacy and allyship. I also realized how much I need to embrace and explore my identity as a person with a disability.

After jotting down a list of names, I settled on Chronically Emily. At the heart of what it means to be disabled is the longing to be seen and accepted as fully human. I may be chronically ill, but I'm also chronically still me. I am disabled and I am fully human.

Chronically Emily is a space to explore my journey with chronic illness; my new growth in the disability space; my passions for fundraising, advocacy and awareness; and my love for everything from dogs to friends to books. Most of all, it's authentic and vulnerable. And it's my story.



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