For Suzanne

img_6084-version-2.jpg

Her story through his eyes. Preface...

When I first heard of the disease I honestly didn't take it that seriously.

I left to begin my journey along the Appalachian Trail in 2013 I had done a decent job of pushing aside all the things that might be harmful along the way. You plan and plan, taking all the precautions, yet there is something about the risks that you can't help but try to ignore to some extent. There are the rattlesnakes, the momma beers, the lightning, the cliffs, the heat, the water, the drugs, the dirty hands, the rats, the crazy mountain folk with chainsaws, etc, etc.

Long story short, there is always something harmful. The longer I hiked, the more I learned, including both further dangers as well as how to avoid these dangers. Everyone along the trail is almost always willing to offer some wise advice, give proper warning, or lend a hand. Some things however go unspoken.

One of those things is Lyme Disease. No one seems to want to talk about it, or at least offer any real discussion on it.

Sure, everyone talks about ticks. They cuss them left and right, pick them off, and then take a lighter and burn them. Everyone on the trail hates the little critters, more than anything else for that matter. The problem however, is that is is almost always a laughing matter. People constantly joke about them, to the point you quickly forget how dangerous they can truly be. Long story short, I made it 800 miles of the trail without any serious issues. I had a splendid time and felt better than ever. I forgot about ticks mostly. I forgot about Lyme Disease altogether.

Fast forward a year...

I met a beautiful nerdy blonde musician while living in Chicago. We decided to leave the city and I managed to convince her (she was really excited!) to get back on the trail with me. A few months later we picked back up at the exact spot I had left off the year before. Raised in Buffalo, she had never really done much camping growing up. I shared with her all I knew. We learned and grew together.

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.

It came to the point where we could hardly hike with each other for more than a mile without her breaking down, me getting frustrated, and us getting into some sort of argument. Her nerves were all over the place. As much I tried to understand I simply couldn't.

I HAD NO IDEA WHAT WAS GOING ON WITH HER!

Sure we were running low on funds, and the hiking had been tough, but she was a strong woman, and these minor things certainly were not the cause of her behavior. I at least knew that much. I could tell that beyond the tears there was something deeper neither of us could understand. That was the problem all along, we didn't know what we were dealing with.

Then came the bullseye rash, eventually covering her entire side.  We had at least done enough research the next time we had cellphone reception to know she needed attention immediately. We hiked into the first town into Vermont, literally just having crossed the border that day. It was late into the night and we were both tired, her measurably more so. I tried to cheer her up, telling her it was going to be okay, but the more and more she read online, the more she looked defeated. I waited for her a few hours at the hospital while they "took care of her." I quickly became discouraged as well. I felt this was going to be the end of the hike and I was beyond frustrated that it was all because of a little tick. We left the hospital defeated. All they could do was to give her some antibiotics (she hated taking those in the first place) and tell her to rest. After a hard night of sleep stealth camping in the back of an abandoned house, we woke up hiked around town the the closet coffee shop. We were both quiet for the most part. All I wanted was for her to feel better, and all she wanted was for me to be able to finish my hike.

I wasn't going to leave her and I made sure I didn't. We headed to Buffalo, where I spent a few days with her before heading down south. I could tell she was depressed and I was deeply concerned she might never feel the same again. During our short time apart, before she came down to North Carolina, I did a lot of thinking about the situation and how everything still frustrated me, especially knowing that she was depressed.

I soon realized however that it wasn't her, or having to end the hike, or being home, or the hospital, or the medicine that I was frustrated about. Heck, it wasn't even the tick that I was frustrated with anymore. After all, not all ticks carry the disease. So it is must be Lyme disease then that I am frustrated with.

Yes and No.

Yes, I wish she would have never been bitten and never contracted the disease. I wish the disease didn't exist for that matter.

It does. And it is just as real as any other disease out there.

This is where I believe my frustration lies. I'm fustrarted that I didn't know more about it before beginning my hike, that I pretended it wasn't a real concern, that plenty others do the same, that no one seems to realize it sticks with you forever, and that hardly anything is being done to find a cure for it.

I'm less frustrated with the disease than I am with what is being done about it.

- Adam Pressley

Her creation: Space Cubs. Not only does Suzanne battle Lyme, she also creates music. Music that has allowed her to speak through not just words, but sounds - sounds that help give purpose, drive, and inspiration to so many.

Though you can feel it with every song in her new album, "THE EYE" was written specifically about her experience with Lyme Disease.

Sound Cloud

Vimeo

BandCamp

Unspeakable Records

This is for you, Suzanne. 

Suzanne a.k.a Space / Space Cubs / Boi Shocka, Watching you battle Lyme disease has been a wild adventure. I'm sorry for the moments along the way I've failed to fully understand how you've felt, the moments where I couldn't comprehend the severity of it all. I often think I would have happily surrendered myself to be bitten by that tick instead of you. Then I realize I'm not nearly as strong a person as you. I'll never be able to truly explain to you how inspiring it has been to be around you over the last year. I've seen the negative effects of Lyme. I've seen you take that negativity and work it into something beyond yourself, something truly spiritual. I know that most people will never be able to see or understand what you went through while writing your album during this difficult time. I at least wanted to help give them a chance to hear it. This is me simply trying to share something too beautiful to keep to myself. This is me trying to connect you with others that share an experience and battle similar to yours. This is me simply trying to show how we are all in this together.

You inspire me each day to pursue all that I truly love, especially you!

Love,

A-PRESS

*Side note

Part of what makes this story to moving is it's sound; the raw, honest, and beautiful sound that can only be found when someone is speaking from the heart, and I didn't want to interrupt or change that.

I love writing, but even more so I love stories. Stories have the ability to change lives, to motivate and create a spark within someone to speak up and share their story, or the story of someone they love.

Everyone has a voice that deserves to be heard...

Share yours

#morethanlyme.