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I live in Los Angeles, where I write and blog under the California sun.

One Word at a Time--It's That Easy and It's That Hard

One Word at a Time--It's That Easy and It's That Hard

One night, just over two years ago the Professor and I were wide awake having just given Mathilda her second dose of Xyrem. "You know," he said passing me  a cup of tea, "we should write a book about this. We should tell our story at some point."

Notice the we.

It was a great idea. With him having already written over a dozen books, I thought it would be perfect. The Professor could do the typing--60 words a minute, 60,000 words or more. Most likely he could nail it in less than 6 months. I could fill him in with all the memories of being in hospital with our little Narcoleptic when he was away presenting papers at conferences. Dream team.

But really what transpired was that Waking Mathilda was my story to tell, for a myriad of reasons. And with the first twenty four months of relocating behind us, and another two years to wait until our Green Cards came through before I could go back to work, telling our journey fell upon me with a conviction great enough for me to begin writing. One word at a a time.

I could no longer disregard the compulsion to write it out. Which is strange in many ways because my professional skills lay somewhere between the clinical (physical therapist a million years ago) and the educational, (home educator not so long ago). Plus, I wasn't raised on Dickens or Dante, neither did I excel in English or anything else for that matter at school. But I suppose I did read. And I read with a passion for prose and poetry pushing away Grays Anatomy at 9pm in favor of Hardy, Betjemen, Elliot, and Lawrence pretty much every night through college. I guess writing was in me somewhere--but I had no idea back then what the story would be.

And although latterly I had confidence in there being a story to tell, I had zero faith in my ability to tell it.

So I began trawling through Mathilda's medical notes and reading everything I could get my hands on about writing and publishing whilst immersing myself in the memoir genre. The learning curve has been a vertical hike--like climbing a glacier without crampons. What the heck was I thinking?

 
 

The first seven weeks I pretty much just sat in front of a blank screen and cried. Exhausted by the mere effort of thinking about what to write. It left me overwhelmed and entirely unconfident in my ability to dash off anything meaningful. Constructing a coherent paragraph eluded me entirely. Not only that but in her medial notes there was no record we could find of an application for Xyrem ever being filed. The very thing we were pleading for--the thing that gave us hope in getting our lives back.

And during that barren time I wondered how any one writes a book or moves past the intimidating bank page and makes headway towards holding something only they have made.

So how does anyone do it? How does a writer actually write? What's required of someone who had an inner life as big as Lake Superior as Mary Karr puts it, but an unreliable memory and a huge dollop of self doubt? And, what if anything comes of it?

  • You have to be willing to take horrible criticism, trusting somehow that constructive feedback is good for you. The Pasadena writing salon and  my personal editor (AKA the Professor) have made comments that have (on more than one occasion) left me plummeting towards a midlife crisis--and other times has had me floating heavenward. If nothing else, I've developed a skin as thick as rhino hide and learned what to listen to, and what comments to throw out.
  • You learn things about yourself. Perspective is wonderful but along the way I've had to recognize both my mistakes and successes. The flaws are all mine, and that's hard to  face up to.  But I'm the grown up here.
  • You make sense of your experiences. It's tough to relive the past, but in doing so, I've come to appreciate the decisions doctors made back in the UK and reflected on our responses. Like the day we realized we were not going to get treatment in time for Mathilda to regain her childhood and began to think about emigrating--a decision upon which five lives hinged that ultimately led to us selling your home and leaving our jobs and families.
  • Writing connects you to others. I'm overwhelmed with how many people read my blog and the opportunities I've had to advocate for Parents of CWN both personally and speaking on a larger platform at conferences. Thanks to the internet writing can reach people right across the globe. That's amazing to me.
  • There's freedom in truth. I was fearful at first, making myself vulnerable and exposing what went on during our last years in the UK, but boy am I glad to have been given the opportunity to reflect gratefully on the provision of treatment.
  • In going all the way back, you face both the demons that almost shattered you and the angels that kept you from drowning. It's scary but it's also redemptive.
  • Living creatively (whatever form of art one pursues) is wonderful because unlike a lot of other things in my life, it's not essential. In Elizabeth Gilerts' book Big Magic she puts it like this: "It's as if all our Gods and Angles gathered together and said 'It's tough down there as a human being, we know. Here--have some delights."
  • And writing ... it's cheaper than Therapy! Right?

So two years later with a second draft on the table in front of me and in the hands of an agent, I have not only found my voice, but the boldness to light a candle in the darkness. Giving context to how the NHS failed Mathilda, and how that ultimately led to a new life here in Los Angeles and effective treatment has brought pain, pleasure, and purpose.

I have no idea if the darn manuscript will ever go to print and end up on the bedside table of a reader in Ohio, London, or LA. Or worse still, at the Goodwill Store, but I've learnt lots along the way. Besides, success (whatever that is) isn't the point. And come to think of it, neither is looking for people who like what I've written or agree with everything I say.

Putting pen to paper, or in my case, tapping away on my Apple Mac 4 hours a day for the past two years has been more challenging than rehabing patients on ICU, more painful than childbirth, and more satisfying than an all-day body massage (which, BTW, I've never had). And truthfully, I still have no idea if I can pull it off.

But if you have a story in you, and a desire to live creatively then don't let the voices of self doubt or those who might tell you there's no point in it put you off. Life's way too short for that.

One word at at time ... that's how you do it.  And I've come to understand: it's that easy, and that hard.

 
Cover Art Mock-Up

Cover Art Mock-Up

 
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The Fine Art of Medically Managing Narcolepsy In Children

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Willing to Cry With You--Befriending a Parent of a Chronically Ill Child