The Rarest of the Rare

Author Interview
Natasha Chai Author Interview

The Silent Paralyzer: A Decade of Life Disrupted shares your journey with being diagnosed with a rare disease, how it has impacted your life, and your determination not to let it stop you from living your best life. Why was this an important book for you to write?

While I have had migraies in my youth, it wasn’t until my early 30s when I had my first experience with hemiplegic migraine. It was at that time when I first relized just how serious migraines can be. Since then, I’ve learned that there are over 10 types of migraines with hemiplegic migraine being the rarest of the rare – specifically, out of a billion people world wide who suffer from migraines, only 0.01% of this billion-person figure have what I have.

Going through this, no one episode is the same. Some attacks leave me more alert than others – but the one constant is that after each attack, I am left to relearn how to walk, talk, dress and feed myself all over again. On the surface, it looks as though the person is recovering from a stroke time and time again but without the physical damage that strokes leave in the brain, though it definitely leaves you mentally strained and depleted.

To add to this challenge, it is something that is without a cure and can only be managed. Many a time the medication and treatments provided come with side effects. There is still so much that the medical community don’t know about migraines which makes hemiplegic migraines that much more frustrating and terrifying.

The recent publication of my memoir was written in hopes that it would help raise awareness so that more attention, more funding dollars for research on migraines – specifically for rare disorders like hemiplegic migraines is made to hopefully one day discover a cure.

What were some ideas that were important for you to share in this book?

Through the writing of my memoir, I wanted to give readers a more in-depth experience of what happens during a hemiplegic migraine attack. Most importantly, I wanted people to understand and appreciate that no matter the type, migraines are more than just headaches. Migraines are neurological disorders that wreaks havoc on not only those who suffer from them, but also for those who must be care-givers of those who are forced to endure the debilitating effects of such a condition.

With having such a rare condition that few people know about, what is one thing you want people to know about living with Hemiplegic Migraines?

Through my narrative, I hope readers will also come to realize that those of us who go through this disorder, do so without choice. When migraine attacks come, it is mostly without warning; no matter what is done to help prevent an episode. Once the paralysis and aphasia comes and goes, the sheer will power to even draw in a breath to continue moving forward in life is something that no words are able to describe. It is in my hopes that through my story, I will be able to offer a glimpse of the collective strength needed to battle through the hemiplegia on an iterative basis.

What is one thing you hope readers take away from your story and how they can help others with chronic illness?

Living with hemiplegic migraines often leaves a loss of self and also loss of control. I hope that my memoir can help readers understand that for those of us with chronic illnesses and conditions, it is a battle every single day. We must fight our internal battles, constantly staving off internal voices that something worse is on the horizon waiting for us; and at the same time, needing to fight the external battles, whether it’s maneuvering through complicated health care systems, trying to find a way to afford the expensive treatments and/or simply trying to convince healthcare providers that what we have is real and that it isn’t something conjured up in our minds.

Empathy, patience and understanding is what I would ask readers to carry with them should they run into someone with hemiplegic migraine or other chronic illnesses. I would ask and plead for them to lend their voice in raising awareness, to relieve the stigma that many migraine sufferers endure, so that there may one day be a cure or a better way to manage such debilitating disorders.

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Posted on May 17, 2024, in Interviews and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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