I’m now entering six years (!) since my diagnosis. The journey has been painful, exhausting, and frustrating but never discouraging–for which I owe a great deal to a paraplegic sheep named Rocky who taught himself to walk.
To read about how Rocky helped me get through my first six months and beyond, read my article here that was recently published in Wide Open Pets, a worldwide website dedicated to all things animals.
If you’re battling Lyme, chronic or not, know that you’re not alone, and that even though the road gets rough, you always have the strength within you to persevere.
Meet Rocky, the paraplegic sheep with an impressive underbite. Rocky was born with paralyzed back legs. Due to this birth defect, his parents decided to send him to the slaughterhouse. But the sanctuary I worked at in Texas intercepted him. Rocky spent his short few years of life frolicking in the pasture, where he taught himself to walk by balancing on his back legs. He was by and far my favorite patient.
This sheep taught me so much about perseverance. It was in Texas that I contracted then undiagnosed Lyme disease. When I became too weak and painful to carry food buckets through the pasture, I still snuck away every day to spend time with him.
It’s on days like these, when my joint flare-ups have me struggling to open jars, that I remember all that this innocent, woolly soul taught me. If a paralyzed sheep can learn to walk, then there is nothing in life we can’t achieve.
All this time I thought I was taking care of Rocky, but really he was taking care of me.
Lately, a number of friends have been sharing with me articles about chronic Lyme disease sufferers speaking out, including celebrities. The articles all say the same thing. To put it bluntly, Lyme disease is a bitch.
But the resounding beauty in these stories is a united tenacity, the strength to fight the daily struggle that lies hidden from the outside. Lyme disease can rob you of a normal life, but who really wants to be normal anyway?
Five years ago, I was on my way toward achieving one of my life goals. But it was halfway through training for a marathon in the beautiful Texas Hill Country that I started having joint pain, muscle spasms, nerve tingling and debilitating fatigue. Six months later, I was diagnosed with Lyme disease.
In 2014, I finished the famed 7-mile Bridge Run in the Florida Keys, my first race since the diagnosis that altered my life considerably. This year, I began training for a marathon again. But history repeated itself. At the halfway mark, my joint pain became unbearable.
It has been difficult accepting that I won’t be able to run that marathon in November that I set my eyes on back in January, the one for which I shelled out hard-earned savings for a spiffy pair of running shoes and spent countless hours researching. But I will get there one day. Dreams and goals are not meant to be forgotten. We make our own timelines for our own achievements, and when we have to put one on the back burner, we fill our lives with abundant new aspirations.
Lyme disease makes me fight daily battles, including abetting in my anxiety struggle. But in more ways than one, this staunch, crippling, silent disease has been a blessing in disguise. It continually forces me outside of my comfort zone, and in doing so, I’m living a life far from normal–a life I’ve still created for myself. Because no matter how overwhelming this condition is, it will not rule the way I choose to live.
“To be nobody but yourself in a world which is doing its best, night and day, to make everybody but yourself, means to fight the hardest battle which any human being can fight and never stop fighting.” —E. E. Cummings
The hands we are dealt in life are not always welcome. They can cause physical pain and emotional heartache, close us off to possibilities, discourage our hopes and dreams. But they can also give us perspective, open the door to new opportunities, and shape us into better versions of our younger selves.
I am a happy person, but my life has not been fueled by rainbows and butterflies. Where I am today is a direct reflection of the independent outlook I have on life and the people and events I’ve mingled with along the way–both good and bad, positive and negative.
Maybe I strive to be an eternal optimist. Maybe it’s my natural intuition to trust my gut over a list of pros and cons. Or maybe it’s my past catching up with my present that’s shaping my future. Whatever the maybe, I don’t regret the challenges, curve balls and surprises that have been thrown my way. Without these blessings in disguise, I wouldn’t be where I am today.
“If we never experience the chill of a dark winter, it is very unlikely that we will ever cherish the warmth of a bright summer’s day. Nothing stimulates our appetite for the simple joys of life more than the starvation caused by sadness or desperation. In order to complete our amazing life journey successfully, it is vital that we turn each and every dark tear into a pearl of wisdom, and find the blessing in every curse.” –Anthon St. Marteen
If I had not been born with both a heart condition and an athlete’s heart, I might have taken my athleticism for granted. I might not have welcomed the challenge of pole vaulting when advised against it. I might have listened to doctors and statistics and never fought the odds. I might not have realized that my heart is both a beating organ in my chest and a synonym for my feelings. So, thank you, dilapidated heart, for teaching me that there are two outcomes to every story.
If I had not been robbed in Ecuador, I might not have needed to travel into the city alone to visit the doctor to refill the medicine that had been stolen from me. I might not have then had the guts to travel to the coast by myself when my companion’s plans fell through last minute. Without these experiences, I might not have had the confidence in myself to travel solo. So, thank you, Ecuadorian muggers, for pushing me to believe in my capabilities, for sparking a fire for solo female travel in my heart, one that I’m constantly feeding and never plan on letting die out.
If I had not contracted Lyme Disease, I might not have moved to the Florida Keys, expanding my zoological knowledge and acting prowess. I would not have had the opportunity to move to the Bahamas and experience the real island life. So, thank you Lyme Disease, for proving to me the strengths of the human mind to overcome physical pain, for showcasing the adaptability of the human spirit to make and embrace change and growth.
If I had not dated boyfriends 1, 2, 3, 4 and 5, I would not know myself the way I do. I would not understand my wants and needs, and I might find myself settling. I might have believed that you can’t be friends with your ex and that every relationship that ends has to be messy. I might have always been left wondering if we could be great together. So, thank you, ex-boyfriends, for shining a capacity for my own forgiveness, understanding and healing that I might never have known, for encouraging me to love myself before committing to someone else, for letting me know when is the right moment to compromise, for proving to me that the heartache and memories were worth it.
If I hadn’t lived through Hurricane Joaquin, I would not have the tried and true empathy to help my Ecuadorian friends struggling with the aftermath of the devastating April 16 7.8-magnitude earthquake. I would likely not be in Seattle today, merging my passions for animals, acting and writing. So, thank you, Hurricane Joaquin, for giving me perspective I didn’t know I was lacking, for showing me what is important in life, for teaching me what it means to be there for someone, and for guiding me along the lonely and arduous rode to self-fulfillment and happiness.
Every moment in life, the bold and the timid, the fleeting and long-term, the smiling and taxing times, creates our present-day selves. What we do with those moments is up to us. What version of ourselves do we want to be?
Lyme disease has been in the limelight lately (homophonic pun intended) as celebrities have begun speaking out about their battles with this tick-borne illness. For those of us who have been fighting the disease for months or years, it is frustrating that it takes a Hollywood star to shed light on a crippling, controversial disease. But little is known about Borrelia burgdorferi. And so regardless of what it took to bring Lyme to the attention of scientists and policy-makers, we are ecstatic that we now have a platform for our voice.
Four years ago in rural Kendalia, TX, I acquired Lyme disease (read more about that here). The joint pain and muscle spasms I was experiencing caused me to be unable to function up to my normal standards at the wildlife facility I was interning at. Though a struggle, I completed my internship, returned to Ohio for treatment, and then moved on with my life. But, like so many others who have grappled with Lyme, the disease moved with me. In Florida, I had a resurgence of the symptoms brought on by high stress. A trip to the ER left me with a hefty hospital bill and a lack of answers, including a doctor who would not listen to my medical history with Lyme. I took it upon myself to mitigate the pain and discomfort.
Cutting gluten, sugar, dairy and meat out of one’s diet has been scientifically and clinically proven to help patients with a myriad of illnesses, including those that cause joint pain, like arthritis and Lyme. This is all based on the science that these foods feed pathogens. Pathogens sit in our joints due to a lack of circulation brought about by inactivity. This is why keeping active is so important despite joint pain; exercise gets our blood circulating and diminishes this pocket of pathogens. Bacteria feed on refined sugars. Acid byproduct from foods like red meat builds up in these pockets as well, conveniently creating a feeding zone for bacteria in our body. Gluten is difficult for our bodies to digest, creating additional food waste that resides in our joints. The bacteria eat and poop just like you and me, and all that excrement has to go somewhere, so it finds refuge in our joints, resulting in further pain. Digestion of dairy causes a release of mucus inside our bodies which, due to its sticky nature, traps pathogens. See how it’s all connected?
One of my vegan mentors explained the science of veganism with this succinct description: “The theory behind a healthy vegan diet is to starve pathogens and provide the body with all the nutrients it needs without impeding normal digestion.” So a balanced, non-processed vegan diet can help an individual maintain a strong immune system and avoid succumbing to illnesses. Living off of canned beans and veggie burgers didn’t make my discomfort go away because I was still ingesting a lot of preservatives like corn syrup and sugars with long, unpronounceable names. But for anyone who thinks a vegan diet is unsustainable for the human body, I implore you to research vegan body builders. No one ever asks an elephant or an ape where it gets its iron and protein.
Months into adjusting my diet, I ran my first race since being diagnosed with Lyme disease in July 2011. The euphoria I experienced upon crossing the finish line is indescribable. I used to wake up in the morning not knowing what state my joints would be in, but I would push through my cardio, knowing the importance of keeping my bones moving. Now, six months into my dedication to being dairy-free, meat-free and relying largely on local and unprocessed foods, I wake up feeling comfortable in my own body. If I cheat on a meal, opting for a pasta dish at a restaurant or accidentally eating a dish with cheese, my wrists, knees and jaw are often painful for the next 24 hours. But I can trace the cause and effect.
Sometimes the best proof for a widely unaccepted, foreign idea is a case study, a personal anecdote. I miss cheese, ice cream and the ability to choose anything off a menu at a restaurant. But I don’t miss it enough to put my body through hell all over again. I will never let a disease dictate my life. Lyme disease does not define me any more than my vegan diet, but they are chapters in the story of my life, and I’m happy to share them with you honestly and entirely.
My Texas escapades were cut short when I was diagnosed, then undiagnosed, then re-diagnosed with Lyme disease. The end of my six-month internship was nearing, but I’d been hired on for an additional one-year commitment as an apprentice. That position would entail an increased load of medical work in the animal clinic coupled with an advanced leadership role. I’d still be living in a trailer with six other people, but The Apprentice Trailer instead of one of three intern trailers. I was excited in many ways but also beginning to doubt my abilities as I noticed my body slowly getting weaker. Soon, standing became an actual task. My arms ached when I reached for things above my head. The joints in my fingers screamed with fire when I pressed syringes to release gruel into the crying mouths of baby birds.
My roommate, Brandi, had recently gone to the urgent care after feeling tired and nauseous. These symptoms alone could have been linked to the common flu or simply heat exhaustion. However, a tell-tale bull’s-eye rash on her stomach suggested a tick might be to blame. Sure enough, a blood test revealed that she had Lyme disease. Once on antibiotics, she began to feel much better.
Initially overlooking my increasing fatigue and acute pain as the result of being over-worked, I started to become concerned after speaking with my supervisor and asking for a lightened work load. I spent a week manning the phone hotline, working the normal 9-5 desk job, but just taking down notes from callers with a pen or keyboard created a nauseating pain. At times my joints were so stiff, I had to try using my left hand, only to find those joints stiffened just as quickly. It was time to hit up the doctor.
Offering a brief overview of my day-to-day interactions with animals, the doctor asked if there was any possibility that I could have been exposed to Lyme disease.
“Funny that you should ask,” I commented. “My roommate was just treated for Lyme.” In fact, I could very easily have been exposed to a deer tick seeing as I spent days working in the deer yard nursing more than fifty orphaned fawns. I didn’t have that bulls-eye rash, though, like my roommate had. The rash occurs in 60-80% of infected cases, according to the CDC. I guess I’ve never really fit into the standard “norm.”
The doctors started me on pre-cautionary antibiotics and poked my arm for a blood test, assuring me that the antibiotics would do no harm to my body in the event that I did not test positive for Lyme. I took the twice-a-day Doxycicline for almost a week. The medicine was intended for a 21-day cycle, but when the test came back negative, the doctor said to stop popping the pills. He was a doctor, so I listened to him. He referred me to a rheumatologist and general practitioner suggesting I be tested for a whole panel of diseases and disorders ranging from arthritis to multiple sclerosis to lupus, even fibromyalgia, which I was sure, if it ever did hit me, wouldn’t ever happen until my elderly years. Being out-of-state, the health insurance was posing to be a very difficult issue. And, my symptoms persisted, in fact worsening to the point that I had trouble walking.
When I commit to something, I follow it all the way through. Despite the discomfort, I managed to finish out my internship. But due to financial reasons, my overall poor health, and the fact that I desperately needed some coddling from Mom and Dad, I postponed the start of my apprenticeship. Immediately upon my arrival home, I was bombarded with doctor appointments, needle pricks, and the anxiety-inducing waiting game. They filled 12 vials with my blood. I only know because I saw them on the table beforehand. I would have collapsed in the chair if I dared peek during the process.
Luckily, my new general practitioner was determined to figure out what was causing my body to feel this way. When the Lyme test came back negative, he scrutinized it, noticing the range was border-line. Instead of writing off Lyme disease once again, he sent it out for a further test called the Western Blot. About a week later, the results came back indicating I was indeed positive for Lyme. It was back on the antibiotics. After one month, I felt better in some ways but worse in others, and so my cycle was extended for yet another month.
I followed up with an infectious disease doctor who also treated an infection in my leg that resulted from a weakened immune system. I never knew infections could be so painful! It has been over two years now, and the scar on my leg remains. I was self-conscious about it for the first year, but now I think it tells my story quite well. Some people get dealt unlucky hands. The ill-fated must remember that no matter how far from reach the rainbow lies, it’s always there, always attainable.
As my body began recuperating, I decided it was best to remain active instead of vegetating on the sofa. Though I was exhausted, it still drove me nearly insane not being able to run for what was now six months time. Instead of running, I took up leisurely bike rides and swims. I began helping out my neighbors and friends of friends to both keep busy and bring in enough money to pay off my student loans. I cleaned houses and cooked family dinners, did other people’s grocery shopping, chauffeured kids and dogs, and slowly worked my way up to yard work. All the while searching for the next step, my bones gradually felt at ease and my energy level increased. My dad said he knew I was feeling better when I started talking in a British accent again.
After more than six months of a life that had to change, to mold, to readjust, a life I didn’t know if I would get back, I had a lot of painful firsts. They were followed by more jovial seconds. The first time I came back from a run, I wanted to cut my legs off from the cramping and strain. The next time I went out, I couldn’t stop running. The first time I strung my guitar, my fingers didn’t want to form the chord shapes. The next time they wanted to pluck away like a monkey with a hammer. The first time I was able to run my fingertips along the faux ivory of that wooden, upright piano I’d played since I was eight years old, I had to double-check that my joints weren’t actually on fire. The second time, I couldn’t stop composing. Finally, I could open jars again, I could write, I could put my hair in a ponytail without experiencing excruciating pain, burning, fatigue, and stiffness. Oh how I’d taken for granted these little things in life.
By the time three months in Perrysburg rolled around, I was ready to be on my own again. I didn’t quite feel 100%, but I had gone from needing to ask for help to being able to bite through the pain. And soon, I hoped, there would no longer be any physical distress, other than that spawned by physical labor in the animal world.
Time spent at home made me reflect and realize that I wasn’t quite done paving opportunities for myself. When I was in junior high, I wanted to be a marine biologist. A part of me still felt called to protect our oceans. I declined the apprenticeship in rural Texas and accepted yet another internship at Mote Marine Laboratory in Sarasota, Florida working at the Dolphin & Whale and Sea Turtle Hospitals. I wouldn’t be earning even a stipend, and I’d have to find a place to rent, but I had money saved up and so much more to learn. I think nearly every day how very different my life could have been if I’d gone back to Texas. I would probably still be there now, three years later. But so much has happened since then, and I wouldn’t trade it for the world, a million dollars, or even a million guinea pigs.