May This Be The Beginning of Something Beautiful

Thoughts are swirling in my head. The posts I want to write are endless. 

The discontinuation of my writing over the past year has been sad, hard, and disappointing. 

What it has shown me, however, is that writing is part of the fiber of my being.

Today, I'm sick in bed with an awful cold (maybe a sinus infection), a dog flanking either side of me, and the music of Bach playing on the little Echo Dot. The sun is in and out as I look out on to the golf course through the large sliding glass door in my bedroom.

The blessing of the solitude and grieving of the past year is that I am beginning to see more clarity and peace on the other side. 

I know it is there.

I hold on tight to the light in the darkness. 

To the waves of endless possibilities as I literally watch the waves go in and out. 

I'm so thankful for these two months at the beach this year. Our time here seems to arrive at just the right time for my soul every year.

I don't know where I want my blog to take me.

Usually I follow my heart and let the rest fall into place. 

What I do know is that I want it to be more.

I want to write more.

I want to grow in my honesty, authenticity and vulnerability as a human being, and also from the perspective of someone living with chronic illness and disability. 

I want to grow in my efforts at advocacy, awareness and fundraising for dysautonomia and chronic fatigue syndrome. 

I want to grow as someone who speaks up for the most vulnerable, and that includes being engaged politically. 

Recently, a Davidson friend who gives so generously of herself to me with little in return, encouraged me to write more. She said it made her sad that I wasn't writing as much.

She said:

Your story needs to be told, and 'it needs to be told loudly.'

It was as if, in that moment, after years of wrestling with the challenges of pursuing writing, I knew that this was part of my path forward, out of the ashes of the grief, and into the light again.

As I let go of the past--the unrealistic expectations of myself to be someone I cannot be in this body, of becoming a mother, of having a career, of being independent, and so many other dreams--I look to find the freedom to create from the ashes something new and beautiful and authentically MINE.

How much I write and how much advocacy I can do will continue to be dependent on my health.

But maybe that's not what matters?

It's not how much I write. It's that I write. At all.

It's that I claim this space as mine. It's that I say "I am a writer."

When people ask me "What do you do?" I fumble through the chronically ill stuff, creating awkward conversation. I mention that I volunteer and fundraise. But I don't say that I write.

As Heather Hervilisky says in How to Be a Person in the World: "You are a writer if you write." 

"You're an artist if you create art, period. You're a writer if you write. First, you have to claim the title. You can't work hard until you claim the right. (For women, I think, that's particularly true.)"

I agree. Because for me, all along, I've been afraid to say I'm a writer because 1. I think I am not good enough, and 2. I think I sound arrogant. 

I want to share my story without arrogance, but with humility and grace and love. I want to share it because I want it to somehow, in some way, help someone else who is struggling with illness, loves someone with illness, or simply wants to grow in understanding it.

 I have spent a lot of time weighing how deeply I want to delve into the realities of life with chronic illness. A voice tells me that maybe the honesty of it all makes me 'unlovable' by a man, or even by my friends. Do people really want to know what it is like to live as a person with a disability and chronic illness in our society? 

I don't know. But just like with the #metoo movement, it's time to let go of the shame we attach to disability and being vulnerable. It's time to speak up loud enough to be heard. That's the only way to change. 

It's time for me to be all of me here on my blog, not just the parts I think are 'safe' to share.

The truth is, I am tired and weary of trying to be two people. I pretend I am healthier than I am so that I can somehow 'pass' in this health-crazed youth-obsessed culture of ours. I don't do myself or any other people with or without disabilities any favors by doing this.

I feel that my blog is the natural place to combine all of my passions for advocacy, awareness and fundraising. 

I feel that it is the natural place to use my voice to the best of my ability to make a difference. 

Until now, my blog has not been searchable on Google (it has remained private), but it is no longer that way. 

For years, I have struggled with the questions: Is my story really worth telling? What makes me think my story is any good? Is writing too selfish? Am I good enough? Will writing take me out of the present? 

The negative self-talk has often sabotaged my efforts to pursue writing more fully, despite pushes from virtually every direction that my writing matters. 

Today, I declare myself a writer.

I already was, I suppose.

But today, I claim my space. 

Here.

This is how I know how to be a dancing light.

I hope you will journey with me through the complexities, joys, and heartbreaks of a world that I have spent the past 20 years discovering. My eyes have been opened. I hope yours will be along with me.

Blessings,

Emily

Photos: Day 1 and 2 at the beach. 

Day 1: Sunshine and no wind! Day 2: cloudy and windy. 

Water around the golf resort 

Shell on beach