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Posted by on Apr 21, 2018 in CRPS / RSD | 0 comments

Touched by words (21.04.2018)

Touched by words (21.04.2018)

Book launch poster: Dr. Sazini Nzula, "Beautiful Inside and Out, 21.04.2018

Book launch poster: Dr. Sazini Nzula, “Beautiful Inside and Out”

Today I received an advance copy of a friend’s just-launched book, and was moved to tears by the dedication she had written into my copy.

The book was written by Sazini Nzula, PhD: Beautiful Inside and Out: What You Out to Know About Autism & How to Embrace the Unique Way Your Child is Flourishing. This book’s largely about dealing with challenges, and the fact that how we deal with them is largely responsible for how well an individual does – or doesn’t – reach their full potential.

The subject of the book is autism spectrum disorder (ASD), but much of what “Dr. Sazini” writes about applies to most challenges that require an adaptation or a change to our plans. Any diagnosis that forces us to reconsider how we see our future, and our place in it. In my case, this was a diagnosis – less than 2 years ago – of a rare neuro-inflammatory disease that causes joint issues, vascular issues, and high-level neuropathic pain. Although only my hand and lower arm are affected, this disease affects my entire life.

So… what were the words that touched me so much that I was moved to tears? Sazini wrote to me:

“In facing challenges with gratitude and resilience, you set an amazing example for all.”

Sazini understands that the reason I made this blog public, the pages about my disease, was to share some positive stories of living with Complex Regional Pain Syndrome (CRPS). That I can still find beauty and joy in nature, enjoy some of the activities that I used to do. That I keep trying to adapt to this new reality, in the best way possible – for me.

Because CRPS is a rare disease, and can present differently in each patient (each patient can have different sets of symptoms), adapting usually means forging a path where none exists… trying things to see how far I can push this disease, or myself. Which is very similar to the situation in which many parents find themselves after a child’s diagnosis with autism spectrum disorder.

When I was first diagnosed (read “Code breaking = A diagnosis” for that more on that process!), I soon started to write about my experiences. I was already blogging about biomedical ethics (bioethics; my field) and patient privacy protection, so writing about my experiences was natural to me. But I only shared these posts with a few of the patients I’d met on-line and befriended; not only people with my disease, but also those living with other conditions and illnesses.

It was never my plan to eventually make these posts public; in my view they were much too personal to share with a wider audience. Because so many of the (other) personal stories of this disease – and of most chronic pain diseases – focus on the negative aspects, my private audience of people living with chronic – sometimes rare – diseases and chronic pain changed my mind. They convinced to make my CRPS posts public.

So on November 6, 2017, on CRPS Awareness Day, I did just that; I made the CRPS/RSD portion of this blog public. It was a difficult decision to share such personal perspectives, on living life with a chronic disease and chronic pain, in such a public forum.

Sazini understands that I made that difficult decision in the hopes of helping others. So the beautiful words of her handwritten dedication in her book mean so very much to me. Thank you, Sazini!


I’ll post in a day or two about the book, once I’ve finished reading it! In the meantime, here are a link to book’s website and to the Amazon purchase page:

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