The Parts You Don't See: Lyme Disease Awareness + A Little Favor Of You...
Though I often write about the hard moments, it's rare that I show you. It's rare that I allow myself to be seen doing something other than soaking in the outdoors. I'm not sure what it is, maybe fear or worry that I will somehow feel less than if I reveal what goes on between sunrise adventures, road trips, and fall picnics.
But I think I may have already proved myself wrong as I ready myself to share this will all of you, because no matter how scary this is for me, I know that you will, and always have been, by my side through it all. I mean, let's be real, YOU all do nothing but encourage, support, and motivate me to let my voice be heard, and in the very least, I hope More Than Lyme does the same.
A Favor Of You
With that said, we are in need of "behind the scenes" footage of goes on in between adventures. Rather, the pokes and prods, blood draws, pill popping, meditation, detoxing, IV - whatever treatment looks like for you - that allows us to continue to live a life more than.
Any content you may have (can be video or photo, best when horizontal) can be emailed to firstname.lastname@example.org!
*hint: It's a lot like the video above but on a bigger scale
Sharing Our Story, Being Present, and Making Magic: A Fall Picnic Adventure With Charlotte
Carrots and Beets baked, branches and the last of the lavender foraged, blankets, napkins, cutlery, chairs, and bags packed carefully between baskets, cameras, and treasured goods; the feeling of Fall hung heavy in the air as we climbed into the car, readying ourselves for a day filled with spontaneity, vulnerable conversations, moments captured, antique finds, and a collective understanding that great things happen when we we allow ourselves to be seen.
When we show up and dedicate our every thought, idea, and physical movement to this very moment.
When we recognize that being present takes a certain type of dedication. A dedication that lends itself well to mishaps and set backs. To mistakes being made and being ok with not always being ok, because being present isn't something you should stress over, but rather, something you should strive for. Something to lean into when we've found it, and let go of when it is just out of reach.
Read full blog post + view image gallery over on Adventures...
Video Filmed + Created By, Chloe
The End Of An Era: Leaning In Close To Life On Tuckaway Farm, While Trying To Adapt To Life Without It
You know that feeling that when you leave a place behind, it takes a part of you with it? Or rather, you leave a part of yourself behind. Well, I'm beginning to think that that piece is something you bring with you, that you are taking with you, in your very core, the many things that place showed you.
You are taking with you the way that place made you feel, and that in itself is more than enough to keep it's echo ever-present.
No matter how lost I felt, or what stage I was at in my life, Tuckaway, and everyone that inhabited it, had a way of bringing me back home. You know, the kind of home that is always with you. The kind of home that can often go missing, feel distant, or disappear for a awhile, but in its own time, is found again. The kind of home that brings out the very best in you, and by that I mean, it reveals your truest self. Your whole self. A self that has been through a lot, but doesn't begin to think twice about giving up. A self that discovered her love for writing, desire for adventure, travel, and deep rooted longing to help other people to dust off, re-discover, or find for the first time, their own creative outlets.
Find out more by heading over to Adventures...
Video Filmed + Created By, Chloe
Visual Diary: A Trip To Summer Lake, OR
Steamed from waters so fresh and warm they left your skin feeling of silk and freedom.
Fields of golden hues speckled with green sage and hidden pathways left you wandering for hours, mind on nothing but the crunch beneath your feet and dark clouds above your head.
The rough texture of the dried earth dissolves beneath your toes, leaving you with sand as soft as the back of a dogs ears; leading you towards a mindset that encourages you to run further, dance higher, laugh louder, dream bigger, and love, love, love, until you don't think you could love this world and these shared moments any more.
Alive and together, each taking in these treasured moments with our own twists and turns. With a perspective that can be shared, cherished, and held close to our hearts, stronger now that we have each other to lean on.
Stronger now that we huddle in close, reminding our often anxious minds that no matter how far from each other we go, we will always have this place to call home.
Find out more by heading over to 'Adventures'
Video filmed + created by, Chloe
Coffee, Rapids, and Yoga: Life On The Rogue River
The sun rose early, draping itself over the trees, rocky earth, and lastly, the rushing river. I held my coffee close, cradling it against my body, eager to soak up every last drop of cool morning air before the sun touched my toes, arms, and eventually face. Which is also right around when the coffee loses its magic, giving way to a day filled with uninterrupted fun.
There's nothing quite like it. The still of the earth and sound of silence echoing in your ears.
Every year, as the date of the raft trip nears, I think about just how much my body craves this time away from routine. Away from the piece of paper that I keep on my desk, reminding me of all the bills I have yet to pay, doctor visits I need to schedule, and supplements I have yet to take.
Find out more by heading over to 'Adventures'
Video filmed + created by, Chloe
On the Road: Lyme Treatment pt. 2
Our lives are different, and our treatments are just as unique. I am always fascinated at the individual processes we take to heal, so I decided to take the camera with me to Seattle for another round of treatment to share the hardships alongside the joy of being with long distance friends. These joyful moments lessen the burden of illness. Needles poking, hands squeezed, and some wonderful memories shared.
Am I feeling better? Or am I just getting better at pushing myself? All I know is that I am in the right place, surrounded by the right people, and one thing is certain: I will make it out of this alive.
Edited and Filmed by Aly Shwedo
Don't ever give up, demand answers from your doctor, question the root cause of your illness, find another doctor if your gut is questioning your current one, become your own health advocate, and guide your doctor by requesting tests be done and medications be given.
The Lyme community has seen monumental strides over the last few years and I am looking forward to seeing major changes being implemented in the upcoming months and years that will help save lives!
My story is very similar to hundreds of thousands of other people and many more who have not been properly diagnosed. I truly hope sharing my painful journey can help anyone of you out there find answers, not feel so alone, and give you hope to never give up!
A Travel Diary Through Europe
There it was, the pause before the adventure. The moment when it all goes still. When the weight lifts, anxiety softens, and the fear from the build up takes it rightful place in the back seat.
My eyes were closed as the plane lifted off the ground, hands wrapped tightly around each other, as if making sure that this moment was real. Yes, I had done it. I was here. I was breathing, smiling, grateful, and oh so ready to embark on this grand adventure.
*View full post on Europe Travel Diary HERE*
Also Available To Watch On YouTube: https://youtu.be/J0IsGVi_aoE
Chronic Illness and Social Media: a TEDx Talk by Madeleine Boyson
At TEDx Walla Walla University, Madeleine Boyson discusses her struggles with isolation while battling chronic Lyme disease and how social media helped fulfill her desire to connect with others and find a community of understanding. Listen to her share her journey of finding new friends and emotional support through social media while battling a chronic illness. We hope that she inspires you to do the same.
Some of our favorite hashtags: #lymedisease, #morethanlyme, #chronicillness, #lymedontkillmyvibe, #invisibleillness, and #butyoudontlooksick.
Keep on talking, connecting, and always share your story!
The More Than Lyme Pledge
Created By: Aly Shwedo, Chloe O'Neill, and loads of help from Melissa Cox - and of course all of you.
Video Edited By: Aly Shwedo. Without her, this video would not possible. She did everything from gathering the clips, to video management, not to mention all the little details in between.
*PLAY VIDEO IN HD // CAN AlSO BE WATCHED ON YOUTUBE, HERE*
The excitement has been building for about four months now, making this moment right now, quite surreal.
I remember sending Aly an email, mentioning some kind of "faces of lyme" video. A few days later, we found ourselves knee deep in ideas, emails, happy dances, texts, and more ideas, trying to make this dream of ours, into a reality. At one point, Aly came up with "The More Than Lyme Pledge," and with that we rolled up our sleeves and got to work.
However, this so called "work," wasn't really work at all, but instead, it gave us every reason to keep on keepin' on. It gave us every reason to believe that together, we can beat this thing.
And it's thanks to all of you. After all, YOU are the beating hearts, strong minds, and resilient hands that make up this community, and if it weren't for the stories you share and hope that you provide, there would be no pledge, and there certainly wouldn't be this platform.
Take one voice, then pair it with another, and another, and another; we carry each other, our doubts, and our fears. We carry each other through the adventures both big and small. We carry each other through the pain, the silence, and the breakthroughs.
The outcome is a force so strong, and voice so big, that we can't help but be heard. We can't help but make the silence of this disease echo from state to country, country to continent, and continent to ocean.
What you get is an unstoppable force breaking through the seemingly insurmountable walls of Lyme Disease.
It starts with you, me, and the stories that we share.
Change starts with us.
With that said, we invite you to...
Join the movement, take the pledge, and share your story....
More Than Lyme Goes Abroad
Here I will be posting one minute clips from my iPhone on each place we visit (well, almost). From the Highlands of Scotland, to small villages nestled below the French Alps, I'm going to do my best to capture it all, one adventure at a time.
Glencoe, Scotland: I Want To Bottle It Up.
The smell, the air, the hills covered in heather. I want to climb to the tallest peak, breathing in the moments past, and the moments yet to come. I want to put my ear to the earth and listen to the forgotten footsteps of the families and wildlife that used to live amongst these now crumbling piles of stone. I want to make a home with my own two hands, stone by stone and brick by brick.
I want to live a long and healthy life, surrounded by those that I share laughs, adventures, and meals with. I want to close my eyes at night, knowing that no matter how much my body aches, tomorrow's light will wake me gently, for I have found my bliss amidst the chaos, the pain, and the uncertainty of dark.
Our want's should not tower above us, but rather, live within us. The things I crave and adventures I seek come from my desire to savor every new smell, sight, place, and moment. But when my hands begin to shake, head throbs, and body gives out, I begin to lose this sense of wonder. I begin to shut out the world that surrounds me, shooing away my self worth and ushering in the pain. Soon, there is nothing but an empty shell of my former self.
Over the past fifteen years, I have found myself in this very place a again and again, and each time it takes every fiber of my being to lift myself back up, shedding the layers of doubt and pain with every step. It's never easy, and often things seem to get nothing but harder, but as soon as I begin to feel those blissful moments, my mind once again fills with wonder, and I smile because I know I can do this.
The Isle of Skye: Thoughts + Musings
I placed my hand above my eyes, sheltering my face from the sun as it rose up from behind mountainous coastline. I waited, quietly, hearing nothing but the beating of my own heart as it throbbed heavy in my neck from the trek up the mountain earlier this morning.
There I was, standing in the middle of the shadowed masses of rock when the sun began to dance it's way across the rolling hills, through the frolicking lambs, and up to the sleeping Giants, waking them from their slumber with rays of golden light.
As my imagination grew, so did the pain in my neck and shaking in my hands. With over half of the trip left, I was eager to find a balance, and since I had prepared myself for this moment months in advance, I didn't think that doing so would be all that hard. I was wrong.
Comparison after comparison to my "old self" has me in a state of denial; what used to be effortless, now felt completely out of the question. However, the more we explored, the more comfortable I began to feel. This was new territory for me: never having traveled so far and for so long while in the middle of treatment. But I'm here, I'm breathing, I'm capable, and I'm certainly more than able to do this, so enough with the doubt. I mean, we've come this far haven't we?
On The Road: A MTL Adventure Video
On The Road: Lyme Treatment
By Aly Shwedo
Preface: I put together this little video to show the ups and downs (mostly ups, because filming isn't on my mind during the bad times) of my most recent trip for Lyme treatment. I am beyond grateful for freezing my toes off in the Seattle winter, warm coffees on every corner, singing with the Uber driver, cutting edge medicine, the most intelligent practitioners that I've ever met, and best friends and boyfriend by my side the whole time. You guys make this entire Lyme disease thing unspeakably better. My heart is still full.
Words of Truth: A Story, Featuring Emily Nichols
By Emily Nichols
Preface: Emily recently wrote a piece for the More Than Lyme Stories - this was the video she included as part of her "words of truth..."
About Emily: From creating a parody advice pamphlet featuring her dog dressed as an old fashioned woman, to building a life around the beauty of the little moments both good and bad, to recording an extremely eloquent, poised, and moving video of why she chose to be more than Lyme, this girl can not only change the way we view this illness, but the way in which we approach the hardships and set backs, good moments, bad moments, and hilarious moments that go along with it, always working towards a life forever more than.
* You can read the rest of her story, here...