How It All Began

I sat there holding him against my chest in the rocking chair. I looked at my watch. Two hours had passed. I was both relieved he was still asleep and yet praying he would wake up. He had been up in pain all night and needed to sleep. But, I was mind-numbingly bored. I knew if I put him down he would wake. Truthfully, he woke even in my arms, but it was much easier to settle him and keep him asleep in the comfort of my embrace. So I sat. Usually I’d watch TV while I rocked him. However, there is only so much daytime TV one human being can handle. I was sick of Candy Crush and nothing had been updated on Facebook in the last 60 seconds. I picked up my cell and opened the App Store in search of games I could play with one hand. Before I could even begin, a notification popped up. I had a text message from my friend, “How did everything go at the hospital yesterday? You OK?” I sighed. I didn’t know how to answer or begin to explain. I had tried to so many times with so many people, but it was impossible to articulate. Without even thinking I tapped the Notes app on my iPhone. It was a impulsive decision that would change everything.

I stared blankly at the screen. My friend had done nothing wrong. In fact, her inquiry was kind and supportive. And yet I was frustrated. Frustrated that my family and friends didn’t understand and frustrated that I didn’t know how to make them. I knew it was my own fault. I knew that saying, “good, but hard,” didn’t really explain it. I also knew more in-depth details led to uncomfortable silence and awkward moments. I hated that even when I poured my heart out to someone they still didn’t get it. They wanted to. But, they didn’t. I felt isolated from those closest to me. I was desperate for someone to just understand that even though the medical episodes were difficult, the biggest impact on my life laid in the spaces between Dystonic episodes. The real impact resides in the seemingly innocuous little moments. Its these moments that take my breath away and leave me forever changed.

My train of thought was interrupted by the shaking and jerking of my youngest son. I put the phone down and held him with both hands just in time to catch him as he bent his back into an extreme arch and screamed. I held him through the spasm and kissed his cheeks as he cried. There was nothing more I could do. So I just sat and held him. Once the spasm was over he snuggled into my chest. Sweaty and exhausted, he fell asleep.

I picked up my phone without even thinking and began to push the buttons as my son slept in my arms. I typed without thought, structure or strategy. I never chose a subject, rather the words just flowed out of me involuntarily. Even at the time, I thought it was an odd thing for me to do. I had always hated writing. I had struggled with dyslexia my whole life and therefore avoided putting my thoughts into written word at all costs. Writing had always been painful, slow and embarrassing. So I found the sudden urge to write surprising, foolish and silly. But still, I couldn’t stop and I continued writing furiously as my baby slept. It wasn’t until he stirred in my arms and I was forced to look down that I found his head wet with my tears. The cathartic release I so desperately needed had occurred in the most unexpected way…through the most unexpected medium. Writing.

When I was finished, without rereading a single word, I scrolled up and entered the title, “To The Mom On The Other Side of the Curtain.” ( I cried as I read it, just as I had when I wrote it, and just as I had when it happened. But now that I had finally articulated the answer to the question, “How was the hospital?” I didn’t know what to do with it. How to deliver it. Who do send it to. I wanted the people around me to read it. It explained so much of what I felt. But, putting it in a mass email felt strange. As odd as it sounds, I wanted to give the people around me the option not to read it. I wanted them to choose to read it. I wanted them to be able to digest what I had to say on their own time and in their own way. A quick google search landed me on WordPress where with a simple copy and paste a blog was born.

Before I hit “publish” for the very first time, I panicked. What if my words only made sense to me? What if I looked stupid? What if my dyslexia shone through above all else? What if those close to me didn’t approve? Didn’t understand? What if my writing was horrible? But, even before I read through it again, I knew I was going to hit the publish button. I figured it didn’t really matter. No one would read it anyway, except maybe my dad and a few close friends. At the time, I assumed no one would want to read about dystonia.

The second I hit publish, an unexpected thing occurred. The urge to write more. I closed the new WordPress app on my phone and opened Notes. Then I wrote. When I was done, I wrote more. It was like the flood gates had opened and I couldn’t stop. I knew that I wouldn’t stop. While I thought I would have run out of things to say by now, I still find myself eager to write. Writing has become a compulsion for me.

Now, one year later, 17 outside publications, 53 posts and over a thousand followers, I never cease to be amazed by the outpouring of support and kindness. I feel beyond honoured that so many of you have given your time to read about a disorder that you have probably never heard of. Every single day I open my phone and feel humbled that so many of you are reading, sharing and connecting. I never imagined all the little stories I write on my iPhone would have reached so many. I’m thankful to all of you for caring about Dystonia, for sharing awareness and for spreading understating and compassion.

This has been an exciting and rewarding experience because of you. So thank you. Thanks to each and every one of you. Without your interest, compassion and willingness to embark on this crazy journey that is Dystonia, there could be no awareness. There can be no change.


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