Posts tagged lyme
Sense Of Self

Lyme disease can be very insidious, sneaking its way into places, thoughts, and memories where it shouldn’t be, making it a daily struggle to find the line between your sense of self and your illness. Sometimes I look back at moments from my life and I cant help but question `whether or not Lyme played a role in them. I question if my identity evolved and grew organically, or if those changes can be attributed to a bacteria existing outside of my control effecting my moods, personality, and health. At this point in my life it’s hard for me to actually remember what it felt like to be healthy, but I can picture it. I see snapshots of myself full of action, moving through life with an electricity I can’t quite grasp anymore.

I see a little girl swinging from trees, a slightly older version dancing ballet or riding horses, I see myself at 13, a girl full of ideas, just starting to glimpse the real world. As clearly as I can picture these images of health, I still can’t feel that feeling. It’s taken me a long time to come to terms with that, and to be able to forgive myself, and my body for not being able to feel it...

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For Suzanne

We hiked for nearly two months and approached the Vermont border. I can't describe how amazing it felt to be so far along the trail, with only a few states left, especially when those states held some of the best hiking yet to come.

The days heading into Vermont turned strange however. I noticed Suzanne (the girl I mentioned before / the one this story is really all about, even though it has taken me far too long to get to the point) just wasn't herself. At first I honestly though she might just be on her period. We had overcome this obstacle however, quite smoothly I might add.

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Aly Shwedo

Q: Letting go. In the process of being diagnosed with Lyme Disease, what things have you had to sacrifice and let go of? And how do you cope and adjust to this new way of life?

Aly: My life now compared to my life two years ago barely resemble each other. I’ve had to give up pursuing my education, my job, my friends, my independence, and almost my entire way of living through this disease. I am still grieving the loss of my former life, but I think sacrifice is a much better word to use when it comes to chronic illness. Lyme disease strips you down to your core. It is easy to look at our situation as a negative experience, but I have been given more than I have sacrificed to this illness. I have gained compassion and respect for anyone affected by chronic illness and hardship. I have been shown what moments in life truly matter and have a greater appreciation for every opportunity that my health allows me to do something “normal”.

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Katelin Kuykendall

My diagnosis came just as I was beginning to follow my dream of being a musician. I had worked so hard to make this dream a reality just in time for Lyme Disease to take it away. This illness chooses to affect my joints primarily, followed by cognitive functions. Due to this, I am no longer capable of being a percussionist. It took three (if not four) years to really grasp the reality of losing my music and appreciate the talents of others. I would break down at the simplest triggers, unable to mourn the loss of this passion. It was hard, ugly, and long, but I overcame. While this was a devastating and life altering realization, so many wonderful things have come from this new path. I’ve learned to appreciate what I had and look forward to what the future will bring. I transferred schools to have a fresh start and learned so much more about myself and my identity.


Adjusting to a new way of life - especially one of difficulty - can seem daunting. Just when you think everything is routine and under control, a new symptom sneaks its way in. Because of this, I’ve learned to take it as it comes; one day at a time, one appointment at a time, one feeling at a time. Looking too far ahead with treatments and tasks can be overwhelming, so it’s important to keep the right perspective.

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Laurel Jackson

Q: What kind of places intrigue you/motivate you–that inspire you to adventure. Somewhere you’d want to hang out at for an afternoon. (Maybe pick a places or a couple places around your home that you love to explore or just visit frequently.)

Laurel: Anywhere in Nature! Just the chance to see and experience something new and outdoors is inspiring to me. The amazing thing about nature is that even if you go to the same spot again and again, you can still find something new or have a different experience every time. The ocean has always and will always be my #1 obsesson, but I also love the forest and mountains. Snowboarding has been a big part of my life, so in the winter you can usually find me riding one of our local spots here in the Cascade mountains and during the rest of the year, enjoying hikes, rivers, waterfalls and alpine lakes. Living between the Cascade and Olympic mountain ranges means never running out of places to explore! Camping, trips to the coast, swimming, surfing, freediving, rock climbing and biking are also other some other activities that motivate me to get outside and have fun. 

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Hailey Allen

I am twenty years old, and in June of 2014 I was diagnosed with Chronic Late Stage Lyme Disease along with five other co-infections. Like many others struggling with this disease, it took me many years (six to be exact) to find out what was ailing me. Although many of my symptoms limited me in middle and high school, it wasn't until I started treatment that I reached my roughest patch yet.

It seemed as if my life had changed nearly over night; I spent most of my days in bed with crippling fatigue, migraines, GI troubles, and wide spread joint pain. Because of my worsening condition, I had to make the crushing decision (more like the decision was made for me by doctors) to remain at home to receive treatment instead of returning to school out east.

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