A few weeks back I had an email drop in my inbox from the lovely Susan Pogorzelksi, a Lyme author who released her book, The Last Letter back in September. She offered to send me a copy of her book and I am so happy to now share the love with another Lymie!
I asked if she would join me here on the blog to share a bit of herself and the passion behind her book and she happily agreed to have me interview her. Having her here with us today is such a treat and I hope you enjoy connecting with her story and passion. She is such a light for the Lyme community!
Thanks so much for joining us on the blog today, Susan!
Thanks for having me, Kami! It’s a pleasure!
When did you first start writing?
When I was in kindergarten, my best friend and I would recite stories to our teacher, who would then write them down for us. We’d illustrate them with rudimentary crayon drawings and make covers out of cardboard and contact paper, punching holes in the sides to bind them with metal rings. These were our first books.
I think I knew then that there was something special about books–about the stories within the pages and the magic they create. I was fascinated by the fact that I could play a part in that–actually, I still am! It’s nice to know that feeling has always been with me.
Have you always wanted to be a writer?
Writing wasn’t my professional goal until I think I was in middle school–when I learned that was something people could choose. It was just always something I did, a part of who I was.
When I was younger, I was a voracious reader, and my stories emulated what I was reading at the time: I wrote mysteries after consuming the books in the Fear Street series. I wrote a book about a group of friends who were runaways after reading survivalist/dystopian books by Scott O’Dell and Lois Lowry (stories which will never see the light of day!).
But then when I was around twelve or thirteen, I discovered A Tree Grows in Brooklyn and coming-of-age literature, and I was hooked. I learned that I could use writing as an outlet to figure out what I was thinking and feeling–to figure out life–and stories became that much more powerful. I think that’s when I decided I wanted to be an author. I wanted to be able to share a part of myself in that way.
I’ve started reading the copy of The Last Letter you sent me and am finding it such an intriguing approach to sharing about Lyme. Can you describe the book to readers?
Written as a series of letters between 1999 and 2003, The Last Letter is a coming-of-age story about Lia Lenelli, a teenage girl struggling to shape her own identity while a chronic illness threatens to tear her world apart. While the book is primarily a work of fiction, it’s a semi-autobiographical account of my own struggle to find a diagnosis and subsequent recovery from Lyme Disease, particularly the emotional toll that having such an illness can take.
What made you decide to write the book as fiction as opposed to an autobiography of your Lyme journey?
I’ve been blogging and journaling about my own journey through Lyme since I was first diagnosed in 2012 (and through fifteen years of misdiagnosis before that) but never had any intentions of publishing a book on the subject, despite prompts from friends and family to share my story–a story I know thousands of people can relate to.
Whenever I did consider it, I couldn’t bring myself to write–I felt like I’d already said what I wanted to say and what was left, I didn’t have words for. But then in 2014, right after I reached remission, I wrote the beginning of what would be the first draft of The Last Letter: a letter from a teenager named Amelia to a stranger, to be placed in a time capsule as a reminder that she had once existed. I didn’t know where it was leading, and so I put it aside.
The idea of leaving something behind as a reminder that I had once lived–the idea of legacy, identity, and survival–began to haunt me, especially considering what I’d been through with Lyme. And so, as I began to write more, I realized that I could tell my story–our story–in a way that provided some emotional relief while really exploring these themes.
As I’ve been reading the book I’ve thought of how hard it can be for us to revisit moments of our past when we are fighting illness. Whether it’s a moment of pain or even a memory of not being sick, they can be hard to relive. Did you struggle with this when writing this story?
This is so true and part of why it was necessary for me to craft my story around a fictional narrative. I think life has a way of anesthetizing our experiences–once you’re healthy, you forget what the worst of it was like, how bad it really was when you were sick.
When I went into remission, I thought I’d put Lyme behind me, but then in early 2015, I had a severe relapse from which I’m still recovering. I knew what I’d been through before, but I was so eager to move on with my life, I’d forgotten how bad it was until I found myself back there again.
Writing this book through my relapse made me not only remember that pain, but it forced me to confront it. Fiction provided enough of a distance that I could do so safely.
I read my book the other day for the first time since the release. I wanted to read it objectively–not as the writer or as an editor with a critical eye, but as a reader. I’ll admit, it was hard.
Because now that time has passed and I’m slowly getting better, I’m again forgetting all those days when I couldn’t lift my head from the pillow, or when I writhed from the pain in my legs, or how I fought for every word when I was writing the book because my neurological issues were so bad, I had only brief pockets of clarity before the fog took over.
Because I was writing the book as fiction, I could lie to myself and pretend it was Amelia’s story. Now I’m reminded that it was mine–that it’s all of ours in some way or another–because everything Lia experiences both symptomatically and emotionally is what I’ve experienced, too.
That’s always the hardest part: knowing how much truth there is even in fiction. But there’s also a sense of pride there. Because reliving those experiences, I’m reminded of what I survived–that I did it once, and I can do it again. It’s what keeps pushing me forward in recovery.
What do you hope readers experience when reading your book?
Part of the reason I chose fiction for this story is because fiction is a powerful form of storytelling. When you’re reading a memoir, the thought that this is someone else’s story is still lingering in the back of your mind.
But when you read fiction, you become the characters–you think, feel, and experience what they do. I realized that fiction could be the perfect conduit to help those with Lyme feel like they’re not alone while bringing awareness to an illness that is so easily (and dangerously) dismissed.
That’s all I could ever want for this book–for it to help someone. For someone to recognize themselves in it and know they’re not alone in their suffering–that there are people who are fighting along with them.
And for those who don’t have Lyme, I hope it brings to light what those with Lyme endure on a daily basis and why we need support, acceptance, and unconditional love more than ever.
What’s next for you? Are there dreams you have for 2017?
It’s been a long journey through recovery, so I’m hoping to keep getting better so I can be in a position where I can be of service to people. On the Lyme front, I’m hoping to do a lot more as far as advocacy and building awareness, especially when it comes to healing emotionally from this illness.
I’m not sure what that looks like yet, but I’m happy to be playing a small part by contributing my writing on The Mighty and the Global Lyme Alliance blog. I’m also working on my next novel, which I hope to release next fall.
Is there anything else you’d like the readers to know?
If I could speak directly: I want you to know I think you’re some of the bravest, most inspiring people I’ve ever met. This disease is ruthless, and it often feels lonely and isolating and like no one understands. To be able to face that takes so much strength and so much courage, and I hope more than anything that you’re able to recognize that strength and courage in yourself.
This Lyme community is something truly special. When you cry, someone is there to dry your tears. When you fall, others lift you up. When you feel weak, we’ll remind you that we’re fighting with you. Please don’t ever forget that you have people on your side and that you’re so much stronger than this disease makes you feel. Stay strong. Be brave.
And to you, Kami: Thank you for being such a strong voice in the Lyme community! It’s been a pleasure getting to know you, and I’m grateful for this opportunity to share my book.
A big thank you to Susan for joining me for this interview. And for being a voice of hope and compassion to Lyme sufferers around the globe. Your story is one that so many can relate to and find comfort in the reminder they’re not alone.
You can find Susan’s Lyme book, The Last Letter on Amazon and other online book retailers. Or you can purchase signed paperback copies on Susan’s website!
To connect with Susan, look for her on the following social media outlets:
Twitter | Instagram | and Facebook at her page Lost in the Lymelight, a community focused on healing from the emotional impacts of Lyme disease.
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