Building Myself a New Life From Lyme Disease

I never thought my life would follow this trajectory. Ever since I was young, I’ve had a clear vision of how I thought my life would turn out: college, writing career, house, family.

Well, at least I got the college part right. I was on track with a couple of writing successes, but then that career took an unexpected departure into the realm of foreign exchange, and several other detours followed. I bought a house on my own when I was 27. Instead of a husband and children, my family consists of my parents, siblings, friends and two lovable mutt-faces. They say if you want the universe to laugh, tell it your plans.

I have a feeling it hasn’t stopped laughing since.

When my health problems started to come to the forefront five years ago, when I almost lost my life to Lyme disease, I had to once again re-evaluate my goals. Dreams had to be put on hold. I couldn’t look too far ahead in case…

Well, in case.

Life was completely upended, irrevocably changed. Everything became a matter of just getting through, of simply surviving.

I worked hard to hold onto what I had. Even though I could barely walk, could barely stay awake for more than a few hours at a time, could barely read or write because my neurological issues were so bad, I forced myself to go to work for an hour or two at a time just so I could maintain some sense of normalcy. Just so I could be sure I still had a job.

Six months into my diagnosis I didn’t think I was going to survive the summer, so I put a plan into motion to publish my first book – a middle grade novel based on my childhood in which I spent many years caring for and watching my grandmother decline from Alzheimer’s disease. Publishing this book meant starting my own business. It meant putting something personal out into the world. And, if the worst were to happen, it meant having something to leave behind.

But instead of getting worse, I got better. Little by little, in small increments over the course of two and a half years, the symptoms began to fade. I worked longer hours at my foreign exchange job, eventually using my skill set to excel my way into a promotion. I took a weekend job at a used bookstore – something that had always been a dream. I began to build up my business not just as a publisher of my own books, but as an editor and creative coach to help others realize their own writing goals. Most importantly, I became an advocate for patients with Lyme Disease – blogging about my experiences and hosting awareness events in my local community.

In short, I began to build back my life.

Things were different the second time around. I was in the middle of a relapse when I resigned from my corporate job due to stress. I tried taking temp jobs until I could figure out my next move, but the Lyme symptoms were returning in full force and, barely two months later, I found myself bedridden again. I sunk into a deep depression. Lyme Disease was hell the first time; I’d struggled so hard to hold onto everything, and I didn’t know if I could do it again. I didn’t know if I could survive a second time.

I didn’t know if I wanted to.

Slowly, slowly, over the course of six months, I began to get better again, but things were different this time. I didn’t have a job to fall back on, and I couldn’t get one because I didn’t know from one moment to the next how my illness would affect me. From neuropathy and joint pain to unbearable fatigue and neurological issues, my health was once again in serious decline. I couldn’t drive farther than a few miles without getting confused and lost. I couldn’t stand a few minutes without every ounce of energy draining from my body. I didn’t know where to turn. I didn’t know what to do.

I had to swallow my pride over and over as I clambered to maintain some sense of control over my life, but this life I’d worked so hard to build for myself – my career, my home, my sense of independence – was slipping through my fingers faster than I could catch it. And so, feeling useless and helpless, I did the only thing I could do when I was stuck in bed for days at a time: I wrote.

I wrote through the pain of this illness. I wrote through the fatigue. Word by word, often completing only one sentence a day, I poured those feelings of loss and grief, of guilt for being a burden on my family and friends, of abandonment by society and the medical community all into my novel. This, I thought. This was the book of my heart. This was everything I could ever want to say to the world – about life, about this disease. If I didn’t survive my illness, then maybe it could help someone else survive theirs.

And if I did survive by some miracle, then maybe my book could help the world understand that the struggle with Lyme disease goes so far beyond the fatigue and the pain.

I survived a second time.

I reached remission from my initial diagnosis after two and a half years of treatment. I was in remission for a little less than nine months when I relapsed. Six months into my second round of treatment, I started to get better. Then, inexplicably, I began to feel much worse. In the spring of 2016, strange new symptoms began to crop up – low-grade fevers, burning sensations in my feet and a sudden decrease in energy once again. We believe I was re-infected with new co-infections, complicating my recovery.

I cried. I prayed. I begged for some relief. I saw a new Lyme doctor. I shook off what little pride I had left and applied for disability. Then, in the rare hours I didn’t spend sleeping or taking medicines and supplements or soaking in an Epsom salt bath, I got to work. I pushed forward with publishing my book – writing and rewriting scenes that were originally nothing more than a jumble of letters and disjointed sentences, thanks to the brain fog and neurological decline. All the while, I continued blogging about my Lyme disease experience, sharing articles and anecdotes on my blog, on Twitter, on Facebook. My doctors and medicine saved my life. Writing and sharing my story with this Lyme community saved my weakened spirit.

The September release of my novel, The Last Letter, put me in touch with some wonderful people and organizations at the forefront of the battle for Lyme disease awareness. I began to cross-post my blog with The Mighty, a great community for patient advocates to share their stories and their voices. I became a contributing writer for new Lyme-related content with Global Lyme Alliance, a leading non-profit organization doing amazing work for the Lyme community both in helping to fund world-class Lyme research and bringing awareness to the general public. In March, I was invited to speak on a panel and share my patient story at a nursing symposium on their behalf.

I couldn’t have ever imagined life would bring me here – with a second book that has the capability of helping so many Lyme patients know they’re not alone in their fight, or sharing my story on stage with hundreds of compassionate people willing to listen, willing to learn. It’s certainly not what I wanted for my life – to still be so sick it’s taken me two weeks to recover, to still be struggling so much financially that I’m always in fear of losing my house, losing my beloved dogs, losing money for the medicine that’s not just sustaining me but saving me.

Even now, when I think about everything I had, everything I worked so hard for that I lost to this disease, I struggle to remind myself I didn’t choose this life of illness. Of course I’d rather be healthy and working a traditional job to ensure my personal independence and financial security. Of course I’d rather be physically healthy enough to leave my house and go somewhere other than the doctor’s office or the grocery store. But this is the life I have now. This is my reality. Day after day, I have to judge the limitations of my body and adjust accordingly. Some days, I can meet friends for dinner. Most days, it’s hard enough to walk from the kitchen to the couch.

I can’t sit back and let my life crumble around me. The fire within me won’t let me and, besides, I’ve worked too hard for too long to allow that. And so, I’m doing the only thing I know how to do: I’m reassembling my life, piece by piece. This time, instead of holding on to what I had in spite of this disease, I’m trying to build a life for myself around this disease – something that will allow me to be independent and financially secure through recovery and into remission. And if this disease comes around again after that, I hope it’s something that will sustain me as I fight to survive again.

I don’t know what this new life looks like. Truthfully, it’s hard to see past tomorrow. But I never imagined my current life would look like this, when I was making those dreams all those years ago, so maybe there’s something to surrendering your plans to the universe, after all.

It’s not as easy as it sounds. Even now, I’m struggling to keep my worries at bay, to keep myself from sinking into a depression that comes from instability. But I’m trying to take comfort in the knowledge that I’m doing my part – that I’m working hard at my own recovery, working hard to create some semblance of security in the face of this illness, working hard to reach people and help them find the courage for their own story. If I can find some purpose in the destruction Lyme leaves in its wake, then maybe it’s this: a brave new life.

In the meantime, I’ll keep building.

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Thinkstock photo via MrKornFlakes.