Lyme Isn't a Crutch. It's a Catalyst.
A Story Written By, Jacyln Gerardot
"Courage is my word, a word I have carved into a piece of drift wood sitting in my room. It means ‘strength in the face of great pain or grief.’ Lyme will try and take you for all you are worth, both body and soul. It is a daily, mental and physical, battle field and courage is necessary to fight it. "
I was diagnosed January of 2014 after my immune system plummeted when I came down with the Epstein barr virus (mono). It was devastating and relieving news all at the same time. I contracted it around the age of ten when I was living in the woods of NJ. For over a decade I was in and out of doctor’s offices running tests and looking for answers. When the tests results came in positive it gave me something to treat, something to work on. Before, I was discouraged and frustrated, shooting in the dark with strict diets, supplements, and palliative measures. I finally knew what my body was screaming at me so desperately trying to communicate. On the outside I look healthy, but on the inside I feel like my body is failing me and at 22 years old that is not acceptable. I have my entire life ahead of me and I will not let this disease change how I live.
I started nursing school before I was diagnosed and it was pretty hard in the beginning because my brain was always swelling and in pain, making it hard to focus and learn. I started treatment by taking natural remedies and treatments. (I have never taken antibiotics for it) It was very time consuming and annoying. I was told that the spirochetes would be gone within 6 months and I was probably too hopeful. I am still in chronic pain, and want to shed myself of my body daily, but I know naturopathic medicine is long term and doesn’t fix you in a day.
My entire life consisted of moving different places, meeting new people, and being pushed out of my comfort zone; the confidence gave me constant change. It allowed me to openly take on challenges and go new places. So ten months ago, before I graduated with a nursing degree, I decided to get licensed in the state of Alaska. Many people said I should focus on my health and get well. But writing to you, as a Lyme family, we all know that getting ‘well’ is very relative.
"We can’t stop our lives for something that may never happen. We have to maintain a state of wellness but not lay in bed and hope one day to wake up and be completely healed."
So, in order to not let Lyme interrupt my life I moved to Anchorage, Alaska this past Friday. “Why?” Alaska you ask… It’s simple, really... I just needed too. I wanted too. It makes me happy… I needed to start fresh, get a new perspective on life, simplify my life, and refocus to become the woman I was created to be. I wanted to place myself somewhere that made me happy, gave me hope and made me feel small. Alaska is one of the most beautiful places I have ever been. I feel insignificant and so do my ‘problems.’ I am exactly where I want to be and doing what I love.
In order to get to Anchorage my friend and I loaded up a jeep with what we chose as necessities in life and drove the 3,771 miles. We went through MI, ND, MT, and up into Canada through Banff and onto the Alaskan highway from BC to Yukon. We tent camped our way to AK rain or shine. We lived out of the car and ate far too much granola. We tended to the boxes of cacti and herbs that we had in the trunk, and cautiously opened every door knowing our belongings were threatening to collapse on us. There were uncomfortable times and glorious times. Every turn was a different vantage point and incredible view of such unchartered territory. The mountains never ceased to amaze us and I’ve honestly never been so happy in my life.
" We were between to places going somewhere I had never been and to people I had never met. We weren’t needed by the world and we didn’t need the world. Just two people enjoying the days as they came and figuring out the details as they arose."
The two week journey was packed full of crazy adventures. We slept in a gravel parking lot one night, because all the sites were full and had to leave before sunrise. Ate soup in a jet boil on the side of the road more than a few times. Took a pit stop in Eureka, Montana, and thrifted a few unique sweaters. Waded in the lake in Glacier park, and hammocked in the pines. Took a private plane over the Glacier mountains to a grassy landing strip where cows wandered over almost keeping us from taking off. Cooked eggs and bacon on the side of a mountain after a hike at sunrise. Explored the mountain town of Banff and tried massive bison and elk burgers. Fell in love with the monotony of the road and all the crazy pot holes. Saw a few moose along the way, and had to look out for logs, caribou, sheep, and bison.
Journal Entry, August 20th.
I wake up every morning and open my eyes, the two greatest gifts I have been given. I sit up while unzipping my sleeping bag and feel the fibers of every muscle screaming and ripping from my bones. My limbs are swollen from wheat inflammation. My head pounds and I black out for a few seconds. My joints ache and my spine says ‘lay down.’ However, I can’t explain to you the reward of breathing fresh air and using the ‘good’ parts of my earthly human body. Even after being awake for a few hours I exhaust myself with just living a ‘normal’ life. That is the most mentally painful part about having Lyme, not being able to be fully ‘alive,’ engaged, awake and present.It was other worldly to be immersed in so many beautiful places and to me that is happiness. I dropped all familiarity to embrace a new lifestyle and to me that isn’t ‘crazy’ or ‘immature.’ I think stagnation is the hearts greatest enemy. If you aren’t doing something that slightly scares you or makes you feel uncomfortable then there isn’t much room for cultivating growth...
During our trip home to Anchorage, we decided to take a helicopter into the Assiniboine mountains of Canada to then hike the 18 miles back to the helipad. It was one of the best and worst decisions I have ever made, but has turned into a great life metaphor. We started that morning hiking up the traverse through the fresh snow in tank tops. We didn’t know what to expect only what others had told us. It was hard work right off the bat, the elevation made it hard for our lungs to expand and in the back of my mind I didn’t know how much my body was going to be able to handle. I kept my mouth shut and just put one foot in front of the other.
When we reached Wonder Pass all you could see was an expanse of snow covered mountains with the sun blinding us from the reflection off the white ground. Once we started into the valley we entered grizzly country making my stomach churn at the site of red warning signs. After getting lost for a few miles and starting to feel blisters forming on all sides of my feet, we took a trail through harsh thickets where the branches raked at our bodies and slashed our calves. There was uneven ground that made us trip and stumble, especially with our huge Osprey packs. My legs wanted to give out and at times my heart was racing far too fast. There was a point in the ascent that we thought we were almost back to the helipad so we changed shoes and put on chacos. One of the gravest mistakes. For a moment, we celebrated as we felt like we were walking on clouds, but a few miles later our feet turned red and blisters were popping and forming.
All I was telling myself for over an hour was, “the way to deal with pain is to accept it.” The last two hours of our hike was a parallel to my Lyme journey. I had to keep going, I literally was not able to give up or allow myself to stop climbing up the rocky hill even though I had a ‘monkey’ on my back for the last 7 hours and was hobbling. I smiled to myself and just thought, ‘even though I am in more pain than usual this is exactly where I want to be and what I want to be doing.’ Life is so rewarding when we test ourselves and strengthen our character no matter the circumstances.
I have learned that Lyme isn’t a crutch it’s a catalyst. It has made me understand my limitations and work on my weaknesses. It has allowed me to appreciate life and not take anything for granted. I am grateful that my illness still allows me to wake up and be independent.
Even though I sound strong, I write to you with a broken heart that is seeking wellness. Last month I tested positive for an autoimmune disease and need further testing to get more answers. I believe I am definitely better than a year ago, but I still struggle with depression and fear that this cloud will always follow me around. In spite of myself, literally speaking, there is something strangely healing through the process of taking control of your life and illness.
There are definitely days that I want to forget I am ill and not take supplements, eat what I want, and blend in. However, all I have learned out of that is ‘pride goes before a fall.’ I have learned great humility on my path to healing. For awhile, I was almost ashamed at my insufficiencies and that I had health issues. However, I have learned that it is ok to ask for help, and to tell people in my life about my sickness. I am better at opening up about how strangely it affects me and how I don’t even know how to handle it sometimes. That was the hardest part for me, because I always wanted to have it all together and be the one to help when things were tough. Hence my choice to be in the nursing field.
Ultimately, there are times for rest and times for productivity. The moment we take pity on ourselves is the moment we lose ourselves. I am the greatest advocate against letting a disease or a chronic illness become a person’s identity. Lyme disease isn’t who I am it’s what I have. It’s not going anywhere so I must take care of it.
I am home for now and have a mission to accomplish working with the native population here in Alaska, and that sounds like a great adventure to me. During this trip I wanted to work on my mental strength and my ability to accept the pain while being as healthy as I can. I wanted to learn how to enjoy every minute of my existence without being upset with my physical and mental circumstances. Now that I am figuratively ‘home’ I am content. Yet, will always strive to continue living with joy, passion, peace, and encouraging those who live with a silent, invisible, and deteriorating illness.
NOTE: I often write a preface paragraph at the begging of each feature as a way to give an overall; a snippet of the story you'll be diving into. However, some stories don't work like that, this one being a good example. So, I gave it some thought, and even tried to add a little something, but it just didn't work. I felt like my words, in a way, took away from the story line and all that this adventure has to offer. Plus, I like to mix things up. So, I hope it worked, and I surely hope you enjoyed it as much as I did!
UPDATE: Since arriving in Alaska Jaclyn has seen the northern lights, visits a coffee shop nearly every other day, AND (dun-dun-dun) she has achieved her dream job and is now working like crazy as a nurse at the Native Alaskan Hospital! I am so impressed by this incredible person, and I cannot wait to see where this wild life takes her. Thank you for sharing your story, Jaclyn.
WRITTEN BY: Jaclyn (@jac.frost)
PHOTOS BY: Jaclyn and her adventure partner, Kristian (@kristianirey)