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I’m Casting a Light on the Shadow of My Lyme Disease

May 18, 2017

Editor's Note: The original version of this essay was written by the founder of LymeBrave and posted to her personal website, www.susanpogorzelski.com.
It was cross-posted to The Mighty with the given title on October 24, 2016.





If this past week has taught me anything, it’s that life moves in cycles of the very good, the very bad and the very impossible in-between, but it never lingers in one place for long.


A few weeks ago, I didn’t think I’d make it through this relapse. Two and a half years of unimaginable hell were behind me, and I was ready to let it go and move forward with my life. I didn’t think I could go through that again. But then — denial. I was so eager to be well that I ignored the signs, forgetting that signs of every kind are here to guide us to something better.


So, it got worse; I got sick again. I slept for weeks (Rip Van Winkle had Lyme. That may not be true, but I’m pretty sure it’s a fact.) I gritted my teeth through the pain and cried that I found myself here, again — here in this darkness, this limbo. Back then, I forced myself to look forward. I had a family to love, a job to return to and I was building my business and ready to publish my first book. I thought, one last dream, to hold my book in my hands. That’s what I was fighting for. One last dream.



But it wasn’t all I was fighting for, and every “I love you” from my parents, hug of comfort from my brothers, visit from my friends and snuggle from my dogs reminded me of that.


This is the dream I turned to these past few months, the only dream that has ever really mattered. It took me a while to realize this. When you’re stuck in the darkness, it’s hard to see the light for what it is. You believe it’s just a trick of the mind, another layer of shadow. But light casts shadows, and even the smallest pinprick is enough to disrupt the darkness; the more it grows, the faster it chases those shadows away.


Here’s a secret: Even in the darkness, the light inside you never goes out.


My light grew dim for a while. It’s not easy to admit that — you want to be strong and brave and have faith in life — but sometimes the struggle takes its toll. Your light begins to fade, and you fade with it. I felt useless, unwanted and, at times, abandoned. It’s a helpless feeling, being sick. It’s like watching out the window as people live their lives while you’re left behind, wanting to live yours, too. It all seems so close, and you reach out, but your hand touches glass — an invisible barrier separating the living from the waiting.


Being sick is a lot of waiting, a lot of wishing — you wait and wish so much, you wonder if you can burn your own light out in the process. That’s when it fades. That’s when you lean on others to help you nurture the flame until the fire inside of you is burning brightly again on its own.


That’s what it took this time. Family reminding me they loved me; my dogs telling me they needed me; my friends showing me they remembered me when I had forgotten I was once something more than this illness.


That’s what I’m celebrating. The victory of those bedridden days passing into memory as recovery time takes hours now, not days, as the fatigue lifts and the pain ebbs and the longing for life is reborn.


I’m taking my place in the world again. I’m casting light against the shadows.


Because it only takes one lonely spark to ignite a flame.



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LymeBrave Foundation, Inc. is an education and support services 501(c)(3) non-profit organization created by patients, for patients. The material found herein is for informational purposes only and is not a substitute for the medical services or advice of professionals. While we aim to provide emotional support resources to patients and caregivers, LymeBrave Foundation, Inc. makes no representation of warranties with respect to the context of the information herein. LymeBrave Foundation, Inc. is not liable for any damages, including the health and wellbeing of individuals, arising herefrom. LymeBrave Foundation, Inc. is not responsible for third-party content, nor does it recommend or endorse third-party content.

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Lyme patients are at-risk of suicide due to the accompanying decrease in quality of life. If you or someone you love is suffering from depression or suicidal ideation, contact your physician immediately or call the
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