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September 3rd 2017...

Yesterday I found out that Waking Mathilda won the Silver Medal for Non-Fiction/ Memoir in the 2017 Readers Favorite Book Awards.

It was one of those funny moments when you think twice about answering your cell because you don't recognize the number and you've heard about a "free" cruise to Alaska many times. Then, just because you're distracted by the cat throwing up, you assume the phone call is important because one of your teens is giving blood and the other is at the beach and could be drowning! 

But receiving a good news call particularly when you forgot that you entered a competition 6 months ago is a very pleasant surprise.

I'm just bowled over and out of words--unusual for a writer but sometimes you just have to sit back and reflect with gratitude for these tiny triumphs. 

I would love to thank my reviewers/judges and say a big congratulations to S.C Sterling for coming first and receiving the Gold Medal for Teenage Degenerate. 

Gotta love the digital certificate since I can't  go to Miami to collect all the bling in person. This substitute feels real enough. I'll take it.   

Gotta love the digital certificate since I can't  go to Miami to collect all the bling in person. This substitute feels real enough. I'll take it. 

 

I am thrilled to be featured in the Sleep Review Mag this week. Here's what they say about Waking Mathilda:

PRODUCT NEWS

Waking Mathilda: A Memoir of Childhood Narcolepsy

Published on August 23, 2017

 

In January 2010, 3-year-old Mathilda Crisp received the H1N1 vaccine in her home country of England. Within weeks, she began to display a bizarre plethora of neurological symptoms that left doctors baffled and her parents distraught. Mathilda began to “hallucinate” at night and suffer with unrelenting sleep attacks during the day.

After multiple failed hospital admissions, a team of neurologists referred Mathilda to the psychiatric unit. Fighting to get Mathilda an accurate diagnosis, Claire showed a young doctor from India video footage of Mathilda collapsing when the child experienced joy. That physician, Dr Siddarth Shah, was the first to recognize the disorder that caused Mathilda to devolve from a vibrant, articulate child to into an unhealthy, confused one: narcolepsy.

Researchers are trying to find a mechanism that links a version of the 2009 H1N1 vaccine used in some European countries to narcolepsy onset, and many of those who developed narcolepsy in close time proximity after receiving the vaccine are filing for compensation. One child received a £120,000 in damages from the Vaccine Damage Payments Scheme, reports the BBC

In the self-published narrative Waking Mathilda: A Memoir of Childhood Narcolepsy, Claire Crisp tells the story of her family’s quest to provide life-changing treatment for their youngest child—a journey that ultimately led them to the Stanford Center for narcolepsy research in California. Leaving their lives, home and families back in England, the Crisp family began a new journey: one that explored suffering, sacrifice, loss, and love as immigrants on the West Coast of the United States.

Claire is also the recipient of the 2015 Patient Awareness Award by the Narcolepsy Network in recognition of her work as an advocate for children with narcolepsy. Claire now lives in Los Angeles, blogs at claireccrisp.com, and is a regular conference speaker in the United States.

 

To read the review on Sleep Review Mag click below:

http://www.sleepreviewmag.com/2017/08/waking-mathilda-memoir-childhood-narcolepsy/

 

How A New Morning Ritual Can Change your Life

Back in March, after my book launch I got sick. The only work I could do was listen to podcasts, sign up for webinars on writing and wobble my way through nights medicating Mathilda, who has narcolepsy. 

Being grounded, forced to slow down, meant I discovered something life-changing. I was watching an interview with Hal Elrod on Jeff Goin's site and was struck by his survival story and his book "The Miracle Morning," which is the "not so obvious secret to transforming your life before 8am."

"Your first ritual that you do during the day is the highest leveraged ritual, by far, because it has the effect of setting your mind, and setting the context, for the rest of your day." --Eben Pagan

"Your first ritual that you do during the day is the highest leveraged ritual, by far, because it has the effect of setting your mind, and setting the context, for the rest of your day." --Eben Pagan

The premise of the Miracle Morning is that if you get the first hour of your morning right, the remaining hours of your day will line up positively with you at the helm, able to deal whatever is thrown your way and actively engaging with every moment. But the challenge for me was to wake up an hour earlier than normal (5 am) and start a new practice as a chronically sleep deprived, full-time Mom, care-giver, writer and advocate. I waned to try it but honestly doubted if I could really miss out on another hour's sleep because after giving Mathilda her second dose of Xyrem around 3am, I usually do get back to sleep. 

The Miracle Morning utilises 6 practices, performed alone and in your happy place which for moi, is outside in the front yard under our large oak trees. 

Here's a quick look at how I have modified the Miracle Morning to fit in with my schedule:

  • Wake around 5 am and make tea--English breakfast of course! 
"To make profound  changes in your life , you need either inspiration, or desperation." --Anthony Robbins  I think it was bit of both for me. 

"To make profound  changes in your life , you need either inspiration, or desperation." --Anthony Robbins 

I think it was bit of both for me. 

  • Sit down outside around 5.15 am, just before it gets light with notebook and reading material. I absolutely love dawn so once I'm to there it's bliss.

 

  • Meditate for 6-10 minutes. Since I hadn't clue how to go about this I searched for an app and found one called Breathe which suggests a tailor-made meditation depending on my physical, emotional and mental state. I'm practically in love with the woman who speaks gently to me every morning! 
"You can learn more in an hour of silence than you can in a year from books." --Mathew Kelly This App is called "Breathe," but there are tons of other options too. 

"You can learn more in an hour of silence than you can in a year from books." --Mathew Kelly

This App is called "Breathe," but there are tons of other options too. 

 

  • Write down affirmations. These are personal statements which reflect my strengths and tiny triumphs. This list was bit on the short side because thinking about what I am actually good at doesn't come easily. Affirmations are also a letting go of negative thoughts, beliefs and behaviors. Phew!
"Ordinary people believe only in the possible. Extraordinary people visualize not what is possible or probable, but rather what is impossible. And by visualizing the impossible, they begin to see it as possible." ---Cherie Carter-Scott

"Ordinary people believe only in the possible. Extraordinary people visualize not what is possible or probable, but rather what is impossible. And by visualizing the impossible, they begin to see it as possible." ---Cherie Carter-Scott

  • 5 minutes of visualization: this is where I explore with my minds' eye various goals, fears and hopes. Recently I did a transatlantic flight which frankly almost had me begging my doctor for meds. But instead I visualized being on the plane with my kids, feeling chilled, watching great movies (with noise reducing headphones) and landing safely in London. Visualizing the flight as an enjoyable experience turned it round for me. I did still have the pre-boarding panic but that was it. What an incredible turn around!

 

  • Reading: For the next 20-30 minutes I read non-fiction, inspiring and life-giving texts--anything from Brene Brown  to Pema Chodron to Seth Godin. 
"Ideas can come form anywhere and at any time. The problem with making mental notes is that the ink fades very quickly." --Rolf Smith Here's what I've read since April.

"Ideas can come form anywhere and at any time. The problem with making mental notes is that the ink fades very quickly." --Rolf Smith

Here's what I've read since April.

  • Scribe:  Lastly, I write down my blessings. Leaning on the belief that joy is rooted in gratitude I reflect on all that is wonderful about my life. I write a whole list of of people and opportunities that I am grateful for and specific actions to which I am committed to implementing.

My new morning ritual takes between 30-45 mins. The Miracle Morning recommends adding in exercise after the visualization but I prefer to do that later because it fits with my schedule and the crazy long  Zumba line at the gym. I also love yoga which compliments the miracle morning mindfulness perfectly. 

As a close friend put it recently, "your life is a slow, sad, madness." She's probably right but I am a great believer in living fully in the light of chronic illness and suffering. There's nothing I can really do about the diagnosis that hangs like a chain of rocks around my neck, but there are fleeting moments each day where joy is within my grasp, and I love those moments.

Getting up 3-4 times a night to help Mathilda with her doses means I am super tired and in the early weeks of starting out I did falter. But it's brought so much calm and perspective to my life that I am now dependent on getting the first hour of every day right. 

The Professor says I am more zen than I've ever been and if there's ever a morning when I'm struggling to wake up, he'll kick me outside with a cuppa and not let anyone disturb me.

Not even the cat. 

 

With grateful thanks to the Professor, Jeff Goins and Hal Elrod.

Claire Crisp

BurnoutCare-GiverChildren with NarcolepsyDepressionLiving with NarcolepsymarriageMotherhoodNarcolepsyParenting the CWNPsychosocial Impact of Narcolepsysleep deprivationSupport

Miracle Morningcare-giverliving with NarcolepsyPersonal DevelopmentMeditationExerciseGratitudeYoga

 

 

Last Week's Podcast and Panel Discussion  with Nada Jones--Founder of Libertyforher

The last two weeks have been super fun working with Nada Jones in her quest to inspire other women to realize their dreams. I was honored to be on a panel in Santa Monica at WeWork where a cosy room of entrepreneurs heard my story of writing Waking Mathilda--A Memoir Of Childhood Narcolepsy. 

A group of  entrepreneurs gathered to inspire women to tell their story, find their voice and engage with their unique creativity. From L-R Celeste Liversidge (adoption attorney), Sarah Duddleham (founder of Darling.com) and yours truly. I got to share my story...from hard working writer to self-published author. But the best bit was hearing from the room.

A group of  entrepreneurs gathered to inspire women to tell their story, find their voice and engage with their unique creativity. From L-R Celeste Liversidge (adoption attorney), Sarah Duddleham (founder of Darling.com) and yours truly. I got to share my story...from hard working writer to self-published author. But the best bit was hearing from the room.

I learned so much from the other panelists that I went back to the next evening with my own Liberty to LIBERTY sessions hosted in Pasadena. 

We named our daughter Liberty 17 years ago.  She lives up to her name :)

We named our daughter Liberty 17 years ago.  She lives up to her name :)

The second night another author who's book I read several years ago, also spoke about her journey to being published. Which (BTW) is very different from mine. Jillian Lauren got an agent and catapulted straight to the NY Times best sellers list with her memoir "Some Girls."  

Jillian Lauren is not only a serious writer but an entertaining speaker, mother and rock wife! She also adopted two sons from Africa and is now on the PTA at their school! 

Jillian Lauren is not only a serious writer but an entertaining speaker, mother and rock wife! She also adopted two sons from Africa and is now on the PTA at their school! 

Several years ago I attended one of Nada's workshops right at the same time I began writing. It was game-changer for me, learning exactly what I needed to do going forward with this big idea I had about the book. That's all it was back then--an idea backed up with belief.

Three years later it is rewarding for us both to realize just what happens when you put excellent advice into practice. It's funny to think now how I really had no serious notion of what was involved in the writing process. I didn't even know what a hashtag was, wasn't present on Social Media and  hadn't thought seriously about self-publishing.  

This is my work space--a little desk from Ikea at which I wrote my entire manuscript. Nada Jones  coaches women like me who have an idea but no idea how to implement it. 

This is my work space--a little desk from Ikea at which I wrote my entire manuscript. Nada Jones  coaches women like me who have an idea but no idea how to implement it. 

If you want to hear that podcast click on the link below. Then check out the other free content at LIBERTY sessions on iTunes. 

Every story in Nada's podcast series is uniquely told by women who have found their mojo, made it happen and want to give back. 

Here's where you'll hear a behind the scenes account of my journey. Get comfy, grab your cuppa your and enjoy!

What you'll hear in this podcast:

  • My professional background back in the day. Ode to Florence Nightingale. 
  • The 2010 H1N1 vaccine. How everything changed in one small shot. 
  • The symptoms of narcolepsy Mathilda experienced at 3 years old.
  • How she got a diagnosis.
  • Why we moved to SoCal.
  • Mathilda's nightly medication schedule.
  • The impact of being up through the night medicating a CWN.
  • Regret around the vaccine. Mothers' guilt.
  • The impact of chronic illness on the whole family.
  • Why I've told my story. 
  • From reader to writer (via the sciences.) 
  • What it takes to become an author/entrepreneur. 
  • Trade versus Indie publishing.
  • Introversion and extroversion: The personality behind the writer. 
  • My writing schedule: what a typical day looks like. 
  • How to bring humor into a painful story. A bit about the lunch party. 
  • Time to embrace social media, Youtube and being real. 
  • The reality of the writing journey. How I got over my pity party on bad days. 
  • Why we should never ever give up and not just because I'm a Londoner. 
  • Having a great cheerleader. But it shouldn't be your sister. 
  • Crazy LIBERTY questions. 

 

Thanks for listening friends and happy weekend! 

 

On Narcolepsy


 
“Claire Crisp has written a book that illumines the strength of the human spirit and the depth of human love in suffering. It is a gem.”
— Dr. Eleonore Stump, St. Louis University

Available on


 
 

Claire Crisp

Welcome to my web home! I am an award-winning author, advocate, dreamer and do-er. Thanks for joining me on my journey. 

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“The experience of having your child develop narcolepsy when only a few years old is terrifying. Claire Crisp’s eloquent experience with Mathilda will help the thousands of children that develop narcolepsy every year to be more quickly recognized and treated.”
— Dr. Emmanuel Mignot, Stanford Center for Sleep Sciences
“This story envelopes [us] because of its profound vulnerabilities, its infuriating injustices, its dogged love, its honest faith. Claire Crisp draws us into their family story with intimate candor and tender courage.”
— Dr. Mark Labberton, President, Fuller Theological Seminary