The Battle Within: My Lyme Story

By Jana Steck

The Battle Within is a powerful, insightful memoir revealing the beast that is Lyme disease. Jana lays bare a life burdened by chronic illness and her epic battle against an elusive enemy. Her story culminates with a life-changing pilgrimage through psychotherapy. With courage and honesty, Jana effortlessly weaves a narrative that beckons us along.

 

At the age of three, Jana found her passion in the dance studio. By the age of nine, she had dreams of being a ballerina. Despite the exhaustion that plagues her most of her life, she barrels through the challenges. But, by the time she enters college as a dance major, the fatigue becomes all-consuming and a crippling pain begins to overwhelm her. Over time, the symptoms keep mounting: migraines, dizziness and a tremor that weakens her resolve to become a professional dancer. By her mid-thirties, Jana is floundering. After decades of slogging through life, her body can no longer sustain. Four dramatic health events finally lead to a diagnosis of Lyme disease, and the long tightrope of treatment towards full recovery.

 

As Jana nears her victory over Lyme, she is confronted with a new enemy. Diagnosed with chronic PTSD, she shares her inspiring pilgrimage through psychotherapy. Her voyage into the depths of her psyche reveals a creative cast of characters that fill her with hope, even in her darkest hours.

 

The Battle Within captivates us with evocative scenes of a life challenged by exhaustion, pain and fear. We witness Jana find the fortitude to push through the burden of chronic illness. She takes a deep dive into the reality of overcoming Lyme disease and finding inner strength in the face of PTSD. Facing her fears and vulnerabilities, Jana finds healing and her truth. Her story is a celebration of resilience, hope and renewal.

185 pages

• Language: English
• Publisher: Jana Steck
• Release date: Feb 22, 2022
• ISBN: 9798201011901

Jana Steck

Jana works with a local non-profit serving the elderly community. You can also find her at her blog, www.unitedbylyme.com, where she shares her experiences battling Lyme disease and seeks to create an online community for others who are suffering with this affliction. Jana has a B.A. in dance where she earned an Excellence Award in her field. After college she danced professionally with Mo-Trans Dance Company. She is also a licensed massage therapist. Residing in Bigfork, Montana with her husband and her beagle Oliver, she enjoys paddle boarding the lakes and rivers of the Flathead Valley.

Book preview

A Little Nudge to Carry On

∞ A Personal Note from the Author ∞

Ihad a dream that stuck with me and whispered at the edges of my psyche. In my dream I was in the large entryway of a modern Victorian-era home. High ceilings with ornate light fixtures elegantly illuminated the warm white walls decorated with expensive art and crafted crown molding. I walked around a grand staircase that seemed to rise to the heavens. I gazed through a throng of people who were part of a gala of sorts. It was obviously an artsy party, full of dancers and musicians. An after-party I had been to before. But as I walked around I realized I was in the midst of strangers. They were all dressed very hip and chic, as artists so often are, carrying glasses of champagne and classy cocktails. I had the fleeting, cursory thought, Why am I here among these strangers? I was searching for someone but I didn’t know who. The urge to find this person was like a siren call gently summoning me under the din of music that filled the whole house.

I turned a corner and there he was. He was standing in a large, oversized doorway, casually leaning against the door jam. His hair was long again, he hadn’t worn it that long in years. Dressed in a classic white button down, top few buttons open, and sleeves casually rolled up to his elbows, tucked into a pair of faded denim jeans with a brown leather braided belt and brown docksiders. He always carried with him this air of chic sophistication that screamed, I’m an artist!, while remaining approachable and loveable. His presence exhibited warmth and compassion, as well as stoic confidence. His big blue eyes had a glint in them that had long ago disappeared. They stood out alluringly against his red locks and tan skin. Those eyes pierced through the crowd, set and determined. They weren’t searching, but knowing. He looked just the way I like to think of him in my waking hours. Full of life, love and creativity.

I could tell he was waiting for me, though he showed no sign of impatience. It felt as though he had been waiting there for centuries and would have continued to wait for as long and more until I found him again. As soon as our eyes met his face spread into a large grin. I sprinted toward him with an urgency of love, remorse and glee all wrapped up in a crazy knot. I threw my arms around him and wept, saturating his starched white shirt with a decade of tears. All I could do was repeat over and over again, I love you, I miss you, I love you.

I awoke with a stir, those last words still on my lips and in my heart. I love you Uncle Chris, I miss you. The whole time I was aware that I was dreaming. I knew that he was dead. I knew that he was visiting me to let me know he had found peace. Uncle Chris was my best friend. He had a way of always making me feel as though I was the only person in the room, no matter how many and how important the other people were who surrounded us. I was his muse, and he was mine. He was my biggest fan, and he was my inspiration. When he died, he took a piece of me with him. I hadn’t dreamt of my uncle since the first months after his death, almost nine years before. I thought of him constantly, literally, but I had never dreamt of him. I suppose that’s why this dream stuck with me.

I believe in signs and to some extent ghosts. I don’t believe we go to a heaven or a hell. I believe we go to another realm. Due to the circumstances of my uncle’s death, I was concerned for years afterward that he was stuck somewhere between the living and wherever we go after we die. Because of the bond we shared throughout his life, I felt for sure I would see him, a ghostly apparition late at night...but I never did until this night. It was a significant occasion for me. After the shock wore off I was filled with a contented awe. I was so pleasantly surprised by his arrival back in my life that I pondered what it might mean. Why had Uncle Chris finally returned to me after all these years? He had returned to me at a critical time, when our unique friendship would be of utmost importance: I had to decide whether I would allow myself to be vulnerable enough to finish writing my story and courageous enough to share it.

Uncle Chris had come to impart a message of encouragement, to fan the flames of my creativity, to let me know he was proud of me. A reminder that my artistry was real and he saw me. He always saw me, perhaps like no one else ever has. He also came as a reminder. A reminder of my youth, my tenacity, my courage and my fortitude. Without these traits, writing these pages and sharing the journey that prompted them would have been all the more difficult.

At the age of 39, I was diagnosed with Lyme disease. The day I received the results of my bloodwork was a terrifying and revelatory day. As I reflect on that day, I wonder why I was so terrified and filled with such an overwhelming sense of dread. It’s not like I knew that much about Lyme disease. I had of course heard of it. I knew it was transmitted by the bite of a tick. I had heard that some people get really sick, like a really bad flu. I also thought that only certain kinds of ticks carry Lyme disease and that the spread of Lyme disease was confined to the northeastern states. But, that was it. So, why was I so scared? It was a really bad cold, right?

I believe I was so terrified because deep in my soul I had known for years that I was really sick. I should have been surprised by this diagnosis, but I wasn’t. Not even when my doctor first suggested Lyme disease as a possibility. I didn’t even flinch. I simply thought, Oh my god, yes, that’s it! Somehow, I also knew intrinsically that this wasn’t going to be easy. Perhaps, it was the set of my doctor’s jaw when she recommended I have my blood drawn to confirm her suspicion. Maybe it was the grave look in her eyes when she queried if I had ever been bitten by a tick. Whatever it was, my body and my mind immediately accepted this fate and I was filled with a determination that surprised me. I have always been stubborn as hell, but until that moment, I had never experienced such a pure resolve to conquer an invisible enemy.

One of the most prominent misunderstandings about Lyme disease is how common it is and how frequently it goes misdiagnosed or undiagnosed. So that day was not only a terrifying thunderbolt, it was also an epiphany. I had lived most of my life feeling unwell. Though I felt unwell, my symptoms were always minor and easily explained away or attributable to other diseases or disorders. Like so many others who have walked a similar path, by the time I was finally diagnosed I had been through a litany of tests. Most of those tests came back negative. I really only had one misdiagnosis but it left me woefully vulnerable. On the day I was diagnosed with Lyme disease, there was a sense of relief. A sense of justice. A sense of recognition. A sense of validation. A sense of affirmation. All that frustration over years of feeling unheard, misunderstood, less than, incapable and inept. I honestly don’t know at what age I was beset with Lyme disease. All I know is that for most of my life I had suffered from a growing list of inexplicable, misdiagnosed or undiagnosed symptoms. Now, I finally had an answer. An answer to a life full of trials and tribulation.

Of course, this feeling of relief was quickly overwhelmed by dread. Dread of the uncertainty looming ahead. I knew innately this wouldn’t be like treating a bad cold; it would be relentlessly exigent. This uncertainty about what treatment would entail was only exacerbated by the lack of easily attainable knowledge surrounding this disease. We don’t talk about Lyme disease much as a society in this country, so there is a vast misunderstanding regarding the severity of it. Despite my lack of knowledge, my heart sank into my stomach with the unbelievable weight of this diagnosis.

I’m not going to sugar-coat it: treating Lyme disease was a relentless journey. It was a trek full of bizarre twists and unexpected turns. It was a metaphorical journey through a dark and eerie forest with monsters lurking within every shadow. There were vast deserts of loneliness and deep valleys replete with greedy sinkholes. Throughout this odyssey I was terrified. I was terrified of being swallowed alive by the inky darkness that surrounded me or succumbing to the cavernous recess of my mind. I paint it in such a way because it was an utterly surreal experience. Thankfully, along with the monsters lurking in the dark corners of my mind, there was hope hidden in gems of inspiration that I clung to throughout my endeavor.

In his arresting voice, Steven Tyler sings, Life is a journey, not a destination. As a huge Aerosmith fan, it has long been one of my favorite quotes. He goes on to say that after years of tryin’ to walk through the pain...It’s amazing when the moment arrives that you know you’ll be alright. I have loved Aerosmith since I was a teenager and have drawn inspiration from this song through the years. But after walking the long tightrope of treatment, this quote from their song Amazing took on new meaning for me. Treating Lyme disease was a relentless slog. It required daily reminders and affirmations that tomorrow would be a new day. And every day that I got up and fought this enemy invader, I was one day closer to wellness. If I had viewed each day as my destination, I’m not sure I would have had the strength to keep getting out of bed each morning. I had to consciously choose to view my circumstances as a series of events, a journey, and convince myself that one day a moment would arrive when I would be alright. I clung to this proverb like one clings to the edges of a canoe about to careen down a waterfall.

Despite digging my nails into hope daily, my journey didn’t end with the conquest of the beast that is Lyme disease. The mental, physical and emotional distress of my battle, along with the feelings of insecurity caused by years of the bacteria slowly invading my body, only perpetuated what was already brewing deep in my subconscious. A few months after completing treatment I would be diagnosed with chronic post-traumatic stress disorder. I had defeated the parasite ravaging the corporeal part of me only to be confronted with a new enemy, fighting for my spirit. After a two-and-a-half-year battle against Lyme disease, this new menace revealed itself and I was forced into a new confrontation. My subsequent pilgrimage through psychotherapy would be just as, if not more, life altering as surviving Lyme disease.

My therapist would lead me on a voyage through my mind. What I found in the hidden depths of my psyche was superbly, surprisingly creative. My mind revealed to me a cast of characters that I had designed as a safeguard to protect myself from the onslaught of fear and insecurity I had experienced through the years. I think of them as my arsenal of weapons. But they aren’t destructive weapons; rather, my weapons are creative and inspire awe. My weapons are my inner strengths. A string of attributes that comprise the web of my life: tenacity, creativity, fortitude, love, spirituality, determination, vulnerability and courage. These attributes appear to me in some amazingly unexpected forms, there to fill me with hope in my darkest hours. I would come to realize I had possessed these tools all along, quietly assisting me throughout my epic odyssey, giving me strength, perspective, perseverance, a sense of humor, resilience and ultimately, a new sense of self, one that could and would share my journey.

Through therapy I caught glimpses of dis-ease dating all the way back to my four-year-old self. These glimpses revealed a feeling of vulnerability that had been residing in my psyche for most of my life. It is for this reason that I begin my story with childhood and not simply the perils of treating Lyme disease. The approach I took in attacking this illness is a direct result of the entirety of my experiences up to the day I was diagnosed.

A few days after my Uncle Chris dream I stumbled upon a Brené Brown lecture on Netflix titled The Call to Courage. I typically steer clear of the self-help genre of media, be it TV or books. As a Virgo I’m stereotypically self-critical, which is to say, I overthink everything and critique my every thought and emotion enough as it is. I had never heard of Brené but something compelled me to press play. From the second she stepped onto the stage I was enthralled. Two nuggets resonated with me:

You can’t have creativity without vulnerability.

You can’t get to courage without walking through vulnerability.

After living in a perpetual state of unwell, vulnerability was a familiar notion to me. I was intrigued by the idea that to express myself creatively, I had to make myself vulnerable. Furthermore, it’s difficult to claim the attribute courageous if I never allow myself to feel vulnerable. Brené framed vulnerability as a positive attribute—not a state to fear or be ashamed of but a moment to grab onto and use as a tool for inner growth. After spending a moment reflecting on her wise words, I turned to my husband and asked if he thought I allowed myself to be vulnerable. I like to think of myself as creative and who doesn’t want to be thought of as courageous? I was in the middle of writing this memoir for crying out loud, surely that makes me creative. If I wasn’t courageous after everything I went through, then who is? I really thought he’d respond with an emphatic Yes! It surprised me when he said, Meh, not really. I asked what made him think that. He explained that he thinks I play it safe, I put barriers around myself to protect myself from injury, be it emotional or physical. Trying not to feel affronted or egotistical, I respectfully pondered his response and had to admit that he was kind of right.

In that moment, the image from my dream a few nights ago of my uncle’s big blue eyes flashed in my mind’s eye. That friendly, gracious smile greeting me as a reminder of my essence, a reminder that my true self is creative. I have the heart of an artist. However, during my battle with Lyme disease I had lost my courage. My immediate response to vulnerability had indeed become one of fear. My reaction to vulnerability was to slink away and hide, curl up in a ball and wait for the danger to pass. My uncle had reminded me that I am stronger than that. I don’t need to be afraid anymore. My husband’s denial that I allow myself to be vulnerable spurred me forward to prove him wrong. It was time to open up and allow myself to feel vulnerable.

I read the timing of these two events, the dream of my uncle and watching Brené’s lecture, as well as my husband’s response, as a sign. The day before I watched the lecture I had sent this manuscript to my editor for its second round of editing. In the week prior to that I had been struggling with the first few chapters. I wasn’t happy with them, but I couldn’t figure out how to fix them. So, I had thrown in the towel. I had decided to let it go and hopefully it was good enough. After watching Brené I realized I was cowering from what I perceived as the danger of being too honest, of really opening up about my experience. I had allowed self-doubt to creep in. I was censoring myself, protecting myself from vulnerability. I realized that I didn’t really know why I was writing this book, other than as a form of catharsis. I had never taken the time to really formulate my purpose. And so I immediately grabbed my journal, which houses all of my late-night scribbles of musings for my book, and I asked myself, Why am I writing this book?

Share my story, help others to cope. You’re not alone

Offer hope, shine a light into the darkness that is Lyme disease

Raise awareness about Lyme disease

Offer connectedness, empathy, bringing meaning to my suffering

Vulnerability, You can’t get to courage without walking through vulnerability Brené Brown

Prove to myself I can – creative outlet

Thanks to my uncle and Brené, I found my motivation again to share my story. I recognized that night that if I truly wanted to attain courageous creativity, I had to get back to work and write with abandon. Together they reminded me of a friend I had made along my forthcoming journey. I made a lot of amazing friends along the way, but this friend, with her large, shining eyes full of spirited joy and playfulness, was arguably my most important discovery. She would literally appear out of the darkness during a time of deep inner turmoil. She would remind me that I was a dancer, that I was an artist. She would reveal to me my essence, something I had lost during my battle with Lyme disease. This friend in particular led me out of the darkness, relit my fuse and reignited my passion for life. That’s exactly what had happened when I saw Uncle Chris’s brilliant blue eyes and heard Brené’s chiming voice encouraging me to bare my soul.

As I navigated treating Lyme disease, I felt so alone. With the appearance of each new crazy, inexplicable symptom I was terrified. I needed someone to talk to, someone who understood what I was going through. I needed a reference point, some assurance that I wasn’t dying a slow and horrible death. I needed to know if others had experienced similar issues. That someone, that reference point, that shared experience, was hard to find.

In Gladiator, Russell Crowe cites the immortal words of Marcus Aurelius, reminding us that what you do in life echoes in eternity. This inspiring call to arms speaks to why I’m writing this memoir. It’s the hope that if I could help even one person get through this horrendous disease with knowledge and a modicum of comfort, if I could help one person feel a little less scared and alone...well, that’s a legacy I can be proud of. It may not echo in eternity, but hopefully it will resonate in the souls of others suffering a similar struggle as my own.

Divine Kismet

My story begins June 20, 2017, a Tuesday to be specific. It would be the first day of the worst two-and-a-half years I would survive. June 20, 2017, was the day I was officially diagnosed with Lyme disease. That day served as validation for a lifelong search for wellness.

It was a day that started like any other, though the way the day unfolded is noteworthy. That day would fatefully unravel with the news we had been awaiting. For eighteen days my boyfriend Will and