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How Lyme Disease Opened My Eyes and Gave Me a New Perspective

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When I first went into treatment for Lyme disease, I was in my late 20s. My health was rapidly deteriorating, but I still did my best to keep up with my interests at the time. I was living somewhere I loved and surrounded by the art and music scene, which is what I live for. I had a sense of identity and I liked who I was. My interests defined me, my taste in music surrounded me with a large community of like-minded people and I worked a job with people I really enjoyed being around.

When I got to the point where my health began to take over, I held on very tight to that life. Looking back now, I realize that kept me on this plateau for a while where I fought the reality and therefore lingered. I knew I needed to fully address my health, but I was refusing to let go of my life and everything I worked for. Everything I had at that point, materially, financially and personally, was balancing on a very thin strand that was about to break very soon.


When I first began treatment I thought I could simply hold onto everything I had and nothing would change. I could just move things around and adjust my health priorities to fit into my life. A few weeks into treatment, I saw that was not a reality and had to leave my job rather promptly without saying any proper goodbyes. The art shows and music events were not an option at all and even taking the subway or bus was impossible.

A few months later, I had to leave my home to come back to the east coast, which also happened rather quickly, and I did not get to say any farewells or take anything more than what I could fit into a small suitcase, and here I am, almost four years later, still living out of that same suitcase while all of my items are back on the west coast. I have never been much of a materialistic person, but having everything gone in the blink of an eye was something that just kind of happened. My car was sold to pay for treatments and we gave up our lease in the Bay Area so my partner could come here to help out and we could save money. What a whirlwind!

Now that I am coming out of treatment more and seeing the other side, those things I thought did not matter…kind of do. I feel like I missed out on this huge chunk of my life and suddenly I am this 33-year-old woman with the mindset of a woman still in her 20s. Sometimes I feel even younger, to be honest, and my partner and I jokingly have a club we formed called “Secretly 12” because we act like teenagers still at times.

Keeping a positive mindset with treatment is huge, so there is a lot of Adult Swim and Comedy Central. A sense of humor is key. Living back with my parents makes me regress back into that childhood role where I sometimes forget I am a grown woman now and have my own life. The roles, the time lost, the judgment of where I should be in my life right now are literally everywhere. It seemed so much easier when I was just this sick person lying in bed every day who took her medications and just kept trying to get better. I had no idea that afterwards, picking up all of these pieces would result in me searching for old pieces of myself and introducing who I was to the new me. It is hard to wrap my mind around some days. I feel this sense of rebirth, like who I was is not who I am now and what I want to be is so far from what I thought I could be. The world is literally my oyster and I am seeing it with a new set of eyes.

One of my best friends who I speak with every day has unfortunately been dealt the same health issues as myself. That is actually what brought us to each other. She always says to me that after this experience, her eyes feel like they are wide open. Like she cannot un-see the things she has seen going through treatment, nor can she unlearn the things she has learned.

This is so true. Each of us humbly admit though that this is the best experience we have each gone through. All of those things I “lost” and all of the things that identified who I was, really no longer belong to who I am now. As scary as it is to let go, to surrender and to allow change to happen, when you do, it is the most liberating feeling ever. People pay thousands of dollars to sit on a yoga mat somewhere in the Alps to reach enlightenment and to learn the same lessons that this disease has taught me. The more I heal, and the more I adjust back to the real world, it is like everything is in technicolor after living in a black and white world and those items, those traits and those people that defined me, have all been filtered into the best people, the best traits and the best items. I feel truly cleansed.

In no way am I saying that my experience with Lyme has been a good thing. I am just expressing how it changed me. Daily, I struggle between the old me and the new me. Some days I feel angry that I lost so much time being sick. I often deal with feelings of jealousy and judgment for the things others can do that I still cannot. I missed my best friend’s wedding, family events, numerous holidays. Before, I would have been taking them for granted, but now I appreciate every small moment shared with others. It truly is the little things.

Lately, I have been feeling like I am coming out from underground after a bomb went off and I am picking up the pieces that were tossed about. This is not easy and has resulted in many tears and many late night long conversations with my partner who just listens to me rant, but at the same time, I am learning to let some of those pieces go. I am setting down the pieces of me that no longer are a part of my life and holding on tightly to those that are.

Who I am now is not who I was. I am learning to be the new me and the more I let go of who I was and accept who I am now, the easier that process can happen.

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Thinkstock photo via Wavebreakmedia Ltd.

Originally published: June 22, 2017
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