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 appeared as a blog post on Susan's personal website, dated April 10, 2017--five years after she was officially diagnosed with late-stage, chronic Lyme disease.
I’ve never written these words before. I’ve spoken them out loud to family, wrapped them up in fiction for my book, alluded to them in passing when I thought someone needed to hear them: the reason why I stayed.
But I’ve never written them down before—not concretely, not completely, not like this.
I need to give you some background, so you understand me before you understand what I’m about to say. I tend to see life as an artist—through all of its sorrows and all of its pain, there’s always beauty there. I feel the hum of hope in every ripple of leaves, every jangle of a dog’s collar, every smile from a stranger. I experience life in depth—everything has meaning, everything has a connection. Everything is teeming with energy, with life. This is a small glimpse into my view of the world, a little piece of my belief, a snapshot of who I am. Here’s another: all my life, I've had a fascination with death. No, fascination is the wrong word. Fascination brings to mind being awe-struck, preoccupied, a morbidity. What I had was an understanding—an innate knowledge devoid of any religion that after this life was over, there would be something else. But first, you have to live this life as fully, meaningfully, and joyfully as possible. The key, I’ve always believed, was to live. Which is why, when I got sick, the hardest part for me to endure was the limbo I suddenly found myself in. This wasn't living—this was getting through the day, and for what? For more days spent sleeping in bed because I couldn't lift my head from the pillow; more pain that made it hurt to even move; more anxiety that kept me sequestered in my house. More days like this. I know what desperation sounds like—I've heard its song before. It sounds like relief from the pain, from the fatigue, from the half-life you're living. It sounds like freedom—not yours, but for others—the burden you've placed on them for having to care for you, day in and day out, worrying and wondering if the next day will bring more of the same.
It sounds like peace. It sounds like homecoming.
I don’t welcome death. I’m not ready for it, there is still too much to do. But I’ll be relieved when it’s time. Because I’m tired. I’m tired. I’m so damn tired.
I’ll do this for as long as I have to. But I don’t know how long I can do this.
I’ve fallen through the cracks in this life, everything I’ve built crumbling around me, and though I try and try and try to rebuild, it’s never enough. I’m a financial burden on my family. I feel like a broken record of melancholy to my friends. And this guilt and a longing to be something more—to be even a fraction of who I once was—gnaws at my spirit every single day.
I was the girl who found joy in life, not fear. I was the girl who traveled, who spent a month on her own in France hauling logs down a medieval mountain and writing by the fireside. I was the girl who met challenges head-on, who faced doubt with determination, who pursued dreams with passion.
Some days, I see her—that girl who explored the world and led the charge. But she’s so buried under the weight of this disease, I wonder if she’ll ever return for good or if she’s now merely a shadow of my past. This disease keeps breaking me while I…I keep trying to gather up the pieces, trying to reassemble them to form something new and better and stronger. But to what end? To what end.
Here’s the reality of a life with Lyme: Never mind the physical symptoms—I’ve spoken of that hell before. And the psychological impact, well…you’re getting a glimpse of that here, but it goes so much deeper. This—this struggle to physically survive in a world that thrives on the healthy and forsakes the sick is what takes its toll.
I’m caught in limbo waiting for a disability hearing to provide some financial relief and in the meantime, I’m on government assistance. I’d be ashamed, as we’re conditioned to be, if I had any pride left. But life is about survival now. I don’t get to make that choice anymore.
If I get a full-time job, I don’t know how long I’ll last before I put my health in jeopardy again. Even now, it’s hard to make it through the day, and for every good health day I have, there’s a handful of bad to follow. I’ve already relapsed once because I pushed myself beyond my limitations. I fought and clawed my way back to barely functioning these past two years, and I’m grateful for it. But I don’t know if I’ll have the strength to survive it again. I don’t know if I’ll want to.
If I do push through and get a job despite the limitations of this illness, it would mean I’d lose my healthcare and food benefits. My doctor appointments and tests are expensive, but at least most of the medicines that are helping me get better, however slow and steady it’s been, are provided for. It’s an impossible choice now. I’ll lose either way.
I can’t win. No matter how hard I try to build a self-sustaining life for myself, no matter how hard I work to create something that gives others hope, I just can’t win. And I don’t know why. What have I done in this life that has brought me here? Why, five years later, am I still struggling to get better, still struggling to survive? I don’t understand it. I don’t understand. All I’ve ever tried to be is good—to make the right decisions, to be kind to others, to work hard and with dignity and live a positive life. But it’s hard to be positive now. It’s hard to have courage and hope because that desperation is singing a song I know too well again, begging for any relief from this pain.
I don’t know what my life will look like tomorrow. I’m just struggling to get past tonight. Maybe that’s why I’m writing this, baring my struggles and soul for the world to judge. Maybe that’s all this is—a step towards healing. Because if I have a place to put this pain—somewhere outside of me so it doesn’t rot the soul—then maybe tomorrow will be different. Maybe I’ll hear a different song. Maybe it’ll whisper a different story.
Here, I’ll start right now:
There once was a girl named Susan, and she survived.
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