This Saving Grace


Over the past two years, I've been writing a book about my experiences with Lyme Disease. It hasn't been easy. In fact, it's the hardest thing I've ever written, and considering how I've bared my soul on my blog and across social media over the years, that's saying something. For a while, I contemplated gathering those blog entries and turning them into a memoir, but I couldn't bring myself to write my story that way. I was still in the middle of treatment, still struggling to find some sense of control with this disease, the emotions still so raw. So I tried to create some distance by masking my experiences in a foundation of fiction.

When I went into remission in late 2014, I was beginning to look forward to my future without illness, including considering my options for publishing this book. But then, a few months later, I relapsed. In some ways, relapsing was harder than the original diagnosis because suddenly I found myself back there again--with unrelenting fatigue and pain and a myriad of symptoms, and a future that once again seemed uncertain. I turned again to my book, rewriting the majority of it because there was more I had to say. It was as cathartic as writing could get for me, the use of fiction offering a sense of freedom—a way to escape what oftentimes seemed unbearable while still speaking my truth. It was a place to tell my story, a place to put the pain, a way to heal from the emotional toll that four years of constant illness had inflicted.

So I wrote. I wrote between naps, when the fog of fatigue cleared for a few blessed minutes. I wrote in Epsom salt baths, where I could focus on something other than the physical pain. I wrote a sentence at a time during brief pockets of clarity before the energy drained from my body and the confusion settled back in my brain. I wrote.

It was the only thing I knew how to do.

I wrote about the struggle to find a diagnosis--what it felt like to think I was going crazy because doctors wouldn't recognize what was happening to me. I wrote about the gift of relief when I finally found my doctor—what it felt like to be heard and understood and not so readily dismissed. I wrote about the nightmare that was treatment--when every symptom became so intense, it was hard to breathe. Most of all, I wrote about the emotions. I wrote about the loneliness and isolation--when you can't work (or, in my character's case, go to school) or socialize or even make it to the grocery store on your own. I wrote about what it was like to lose your sense of identity--to not know what’s you and what’s merely a symptom of a disease that’s so often in control. I wrote about what it was like to lose my sense of independence, my livelihood, and even some of my dreams. I wrote about the guilt of being a burden on my family and friends, the regret that this illness had stolen all these years of my life, and the fear that I wouldn't be able to get through it again.

And then, I wrote about hope.

Three years ago, I published my first book, Gold in the Days of Summer, when I was only a year into treatment. Honestly, it was the hardest year of my life, and I didn't think I would survive it. That book--and my family and friends, who can never go unacknowledged--pushed me forward, helping me create a future for myself that I didn't think would last. I wanted to publish that book because that was my passion. Now, The Last Letter has given me purpose.

This journey is a long one, and it's far from over. There are days when I can barely get out of bed, times when my brain and body feel barely functional. But writing has become my saving grace once more, giving me something to look forward to, a future to fight for. And this book has become a symbol for me. All I've ever wanted to do is help people--particularly to help those suffering from this and other "invisible" illnesses feel like they're heard, to know they're not alone in this world. With this book, I’ve been able to lend my voice, in even a small way, and help validate the experiences of hundreds of thousands of people who are sharing in this suffering.

Through The Last Letter, I’ve been able to tell our story. Now, I can’t wait to share it with you. The Last Letter will be released in September 2016 from Brown Beagle Books. To learn more and stay updated on book news, visit the Brown Beagle Books website or check out the new Facebook page dedicated to healing from the emotional impact of living with Chronic Lyme Disease: Being LymeBrave.

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Susan Pogorzelski.

 

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