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Lyme Awareness Month, Day Seven: Finding the Silver Lining in Lyme Disease

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 17, 2012--eleven months after she was officially diagnosed with late-stage, chronic Lyme disease.

I can’t believe it’s been over four months since I last posted here. I’m not sure I’ve ever gone this long without at least some kind of journaling, though I’m pretty sure the long emails, phone calls, and relentless Twitter and Facebook posts have more than made up for that.

Truth be told, I haven’t felt the desperate need for this catharsis that I once did, trying to understand myself, the world, and this life through the medium I know best — writing. And while I know there will be times when I seek this outlet again, right now, I feel completely at peace, like I’m exactly where I’m supposed to be, doing exactly what I’m supposed to do…

As if I’ve gone through exactly what I was supposed to in order to get to where I’m supposed to — here, right now, this place, this being.

Which is great for my spiritual state, but not exactly ideal for keeping up a blog, I know.

See, everything began to change for me with the start of the new year — or, at least, I had begun to change. I’d chosen to spend New Year’s Eve alone, finding myself craving the solitude, as if peace in my home was exactly what I needed to find peace in my heart. Little by little, as the evening wore on and the seconds ticked towards midnight, I could feel a subtle shift begin to take place — joy began to peek through the darkness, and soon that weight of all those months of illness and doubt began to lift. I was putting 2012 behind me in every sense, saying goodbye to the suffering and saying hello to someone I hadn’t seen in such a long time…

(Hello, Susan. It’s been a while.)

The real me. That bursting-with-passion, talking-a-mile-a-minute, thinking-positively me. Only, when I looked in that metaphorical mirror, I could tell there was something else there, too — a self-certainty, a tenacity, a strength. Experience and life lessons had changed me — not in the dramatic way that I had feared and fought so hard against, unsure of who I was to become — but building upon the very foundation of who I was to start with.

These past few months, I’ve felt lighter and stronger than maybe I’ve ever been. The old me laced with something new — an understanding of myself, a self-assuring and life-affirming spirit, a confidence and pride that I’ve grown into and accepted as something beautiful. And as much as I thought I knew about the world, I’ve learned so much more and have realized I’ve barely even scratched the surface.

Even this, at only twenty-nine years old, is just the beginning.

All these years writing on this blog, all that time searching for a way to find myself again, to lead me back to who I used to be…And now I’m here. Only, I’m not who I used to be, not at all.

I’m so much more than that now.

This illness has changed me in so many more ways than I can ever explain, and what I once feared losing — that compassion and empathy that has always been such a huge part of myself,my life — hasn’t gone anywhere. Other pieces have changed, yes — I’m more assertive, less willing to excuse ignorance and injustice, less likely to tolerate the negative…But that compassion and sensitivity has only blossomed into something more powerful, something more beautiful.

Maybe that’s what change really is. Maybe that’s what it means to grow. Maybe the core of who you are remains fixed, but it’s the spirit that grows, a soul flourishing with truth and purpose and awareness.

There are certain circumstances in life that simply force you through those changes, kicking and screaming and desperate to hold on. And only when you look back do you realize that you haven’t lost anything, you’re just a better version of who you were. And though I wish it didn’t take all of this suffering to lead me here, I’ve realized that my illness was the catalyst for this change, for these opportunities, and even for this acceptance and peace that flows through this beating heart.

You are your own foundation, with each experience becoming building blocks — not to change who you are — but reshaping you into beauty and strength, purpose and meaning.

Grow on.

- - - 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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