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Lyme Awareness Month, Day Twelve: The Emotional Toll of a Lyme Relapse

May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!

Editor's Note: The following is an excerpt from Susan's personal blog, dated September 25, 2015--shortly after a relapse and reinfection of late-stage, chronic Lyme disease.

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), gritted my teeth through the pain, and cried that I found myself here, again--here in this darkness, this limbo where life goes on without while suffering takes place within. 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 three 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.

It only takes one lonely spark to ignite a flame.

- - - Will you show the world you're LymeBrave and join us for our Lyme Awareness Month campaign? Contact us at to find out how you can help#shareyourstory!

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