Fueled By Nature: Annie's Take On Thriving, Creating, and Living a Life More Than Chronic Lyme Disease

Annie Perkins MTL Story

This is, Annie.

A young woman that brings movement and life to the pain filed moments, transitions, and sudden shifts that inevitably happen when living with Chronic Late Stage Lyme Disease. A young woman who takes charge and creates from a place of curiosity and an unbreakable love for nature and those that help to make her life full, vibrant, and so much more than. 

She pauses, listens, really, really listens, and takes note of the world around her. Both the good and the bad, the successes and the pitfalls, using them as reasons to keep moving forward with her treatment, and working hard at not just giving but receiving love from herself as she faces each "ah ha" validation and seemingly insurmountable obstacle.

Annie is meeting herself where she is, while not hesitating to make great strides into the world that has now opened up to her. 

- art, nature, connection, love, letting go, and so much more - 

This her her story.

• Creativity + Inspiration: It’s so important to keep your brain curious and soul happy while navigating the ups and downs of this disease. That being said, what outlets are you drawn too and what role do they play as part of the healing process? And do you find it’s difficult to get to a place where you can do these things?  

The healing process is a mind and body collaboration. I learned in order to keep my body happy, my mind must be happy too. While in the longer periods of treatment, I grew an intense relationship with film. Getting caught up in the air of a movie made me feel comfort. Once I was able to return to my artwork again, I began to create almost immediately. I have been given the gift of the arts from a very young age. Nature always inspires that for me. Writing, reading, doing artwork and being within nature is what fuels me, recharges me and makes me tick (no pun intended). I keep very good company as well. My friends and family are the best of the best. There was a time in treatment when none of this was available to me and I lost a lot of friends. In a sense it was like a giant filter to leave me with the best of people from a large amount that were acquaintances. I am surrounded by some of the most talented and creative people and I thrive off of their success like it was my own. When I see another succeed, it makes me happy.

• Your Story + Why You’re Here: Sharing is difficult, especially when it feels complicated, messy, and sometimes overburdensome to do so. With that in mind, we are curious to know what brought you here and why you thought it might be a good time to let your voice be heard, even if it’s just in small ways. 

I never thought I would share my story, until I saw how it helps numerous other people. Sharing any journey, whether it be healing or anything for that matter, can be complicated. I feel like I have finally found that place where I can be comfortable with sharing. It is therapeutic to me and it also helps others, so it is a win-win situation.

My story began in 1994 when I got a tick bite and then the “flu” that was accompanied by Bells Palsy (paralysis of the face). After that it was one major thing after another. My health kept declining more and more over the years. Despite all of this, I still had a happy life in-between the eb’s and flows of my health.  In 2009, after a break up, I vowed to figure out what was going on with my health and to dedicate myself to making sure I was healthy and happy. During this time I met my partner Raphael and together we moved from San Diego to the Bay Area of California. In 2013, while working in San Francisco and studying to be a Nutrition and Wellness consultant, I researched every spare moment I had for answers to why I was still so sick. I was working for Whole Foods at the time and my supervisor noticed my health issues and suggested that I see a therapist through a network the company offered. I made a few calls and met with a holistic therapist. After our second therapy session he told me there was no way this was all in my head and it was very much a physical thing. Just hearing that made me believe in myself, I was beginning to get frustrated since I had seen so many doctors and specialists over the years. He was the first person to trust and believe in me. He gave me the number of an Osteopathic doctor in Berkeley CA and I began seeing her. I presented her with a hypothesis of a disease I had been reading about called Lyme.

I mentioned I grew up in northeastern Pennsylvania where I was bit by a tick and got sick once and asked her to test me for Lyme Disease. Her face lit up and she said “I never thought of that - that may be exactly what you have going on”. I left her, went to work with a Lyme Literate doctor in Palo Alto where we did proper testing and it lit up like a Christmas tree. The rest is history. I was diagnosed in 2013 and when treatment made me unable to care for myself, I returned back to the east coast to be with family. Four years later and my partner and I are planning our return back to the west coast this spring where I will work with another doctor who can help me get to the finish line. Since I am late stage,

I will have to maintain my health for the rest of my life. This does not mean I will be sick all of the time, I just have to keep myself in a stress free lifestyle where my health is the priority. 

• Mental vs. Physical Health: It’s no secret, though maybe to those outside the community, that having this disease can weight heavily on both the mental and physical side of your health, doing it’s best to pull you down with it. To counter this feeling, how do you navigate through these obstacles, and have you found that one side weighs heaver than the other? Or is it equally as challenging to push through the mental barriers as it is the physical?

In the beginning of this journey I had many emotions. I used to put this immense pressure on myself to be a happy and positive person. I would beat myself up a lot. I have learned that Lyme or any other disease for that matter can stir up so many things that we need to face from our past, present and future. I learned to honor those feelings. I allow myself to feel fear, anger, frustration and let it flow through me. We have these emotions for a reason. The more I allow them to pass through, the easier I have found it is to move on, and reset myself to where I want to be emotionally. The key to all of this is to not get stuck, especially with anger and negativity, it can suck you in and attract other negative and angry people very easily. The good thing is, positivity can do the same, attracting more positivity and positive people to you.

Some days I am willing to talk about the harder times, sometimes not. Sometimes a movie, television show or conversation can trigger emotions in me - at those times I have learned to walk away. Sometimes there are people in my life that I need to separate from. Sometimes I just react in a way I would not expect myself to and other times I see myself doing exactly what I didn’t want to do and going backwards on something I worked hard to overcome. I try to remind myself I am human and that I am imperfect. I have a lot of trauma from treatment and trust issues. I see this as a good thing because before treatment I had this idea in my mind that things like disease are not something that can happen to someone if they kept it out of their reality. I think this hindered me getting a diagnosis since I avoided what I knew was the truth and had a hard time admitting I needed to set everything aside in order to get better. Going through treatment made me face all of those fears head on and see it was not something to be afraid of and just another journey I needed to go through in order to complete this strange chapter of my life. 

• What all of This Means to You: Just as Lyme manifests itself so differently in each and every person, it is also seen differently through each of our eyes, hearts, and minds. So, as we move forward in this healing process, what role has Lyme played in your life thus far and how have you chosen to keep living a life more than the fear, obstacles, pain, and challenges that it brings to the table? And lastly, is there a silver lining to it all?

As much as I find the phrase silver lining irritating since I hear so often with treatment, I will admit there is one. I have changed into a very different person after this experience. I like everything about myself now. Before diagnosis and treatment, I honestly did not like myself very much and blamed a lot of the things that happened as a result of my illness on myself. I now know I am not a lazy, undedicated person. I am someone who did the best that I could with the circumstances that I had. I know this resulted in a lot of challenging things and I got caught up in some shit situations, but at least I tired and kept putting myself out there. Each time I got pushed down, I got back up, brushed myself off and tried again. Without this situation, I wouldn’t have met the love of my life, made some of the most amazing friends and really had a solid foundation to build the life that I want from scratch. Right now I have nothing left materially, but I have gained so much.

I see my experience with Lyme like a long hike. The kind where you get out of your car, see a long trail in front of you and at the end of that trail is a large mountain. You know what is on the other side is awesome and worth the long, often grueling, intimidating and mentally straining hike, but your mind tries to trick you into ways you can go around this mountain or maybe just take a selfie with the mountain so people thought you hiked it even though you got back into the car, went home, and got back into bed. Since Lyme came into my experience as a young child, I do not know a life without being sick. The longer I treat and the more I heal, it is like I am transitioning into a different person. I no longer have to live behind my symptoms and pain. It also has a name now. That helps validate it for me. I am learning to let go of the old me and getting to know the new me. I am so many things, I am more than Lyme.

Annie Perkins MTL Story

• Advice You Can Offer: Imagine you’re talking to a younger, maybe even pre-lyme version of yourself. Tell us, what kind of advice would you give him/her, and do you see this advice as something that is ever-changing depending on where you’re at right now versus yesterday or tomorrow? 

If I were to have the chance to sit with my younger self, the things I would tell myself would not make sense even if I wanted them to. That is something that I have a hard time accepting now when I see someone new to treatment and they ask me for advice on their own health journey. At times I wish I could just plug my brain into theirs and download all the lessons, all the experiences and everything else that I learned through this insane experience.

I think that going through everything that I did is what got me to where I am now.

There are no shortcuts. 

Want to find out more about Annie?

Well, to start, she is an incredible artist + you can see much of her work on...

Instagram, where she shares snippets of her day to days, as well as recent pieces of work.

Website (Blackhaus Art), where you can find out more on her recent love for writing (like this article she wrote for The Mighty) + how that, and her need to create, has changed her life.