We’re Celebrating Over 80 Stories Told Through the More Than Lyme Community
After impatiently waiting for the water to boil so I could steep my tea, wrap up in a blanket, and cozy up with my computer to write this out to you—somehow trying to come up with the “right” words to sum up over 80 stories told through the More Than Lyme community, I realized how close I was to writing you an apology.
An apology for the past two months, in which no new stories were posted, and though you could argue that that’s exactly what I’m doing here, apologizing, I want to use this tendency of mine as an opportunity to take those feelings of possible inadequacy and let down, to celebrate what we have.
To celebrate all the voices that have been heard and stories that have been told since we first became a community in 2015.
From poems to videos, visual diaries, and mothers writing about the strength they’ve witnessed throughout their daughters experiences with Chronic Illness, and everything in between; I want to take moment to not explain, backtrack, or do my best to make up for lost time, but to make a promise to myself and all of you that no matter how much we’d like to ridicule ourselves for the things we have yet to do, we must, without judgment or expectation, celebrate all that we have and all that we are.
The grand adventures, the painful setbacks, the subtle shifts, the moments of clarity, and the profound breakthroughs.
Celebrate for both ourselves and as a whole, because when you step back and listen, really, really listen, it might just leave you speechless. And though I would have liked to highlight every story told, I figure this is a good place to start.
April 7, 2015
“Remembering that there was a time not so long ago when I could barely walk from the bedroom to the bathroom reminds me to be grateful for the things my body can do today (like hiking, biking, yoga, or just walking around town). Sometimes though I've found that it just helps to give into those feelings for a moment, to share my frustrations and fears and sadness with someone I love and trust, and to even cry about it if that's what I need to do. Having Lyme has taught me to be more vulnerable and honest with the people in my life and to share the hard, sad, challenging things as well as the happy ones. I'm still working on that one though, and I'm sure I will be for the rest of my life. It also helps to remind myself that I will get better, and to take it day-by-day and moment-by-moment.”
April 8, 2015
“Adventures are what make life exciting and meaningful. The best part about adventure is that each and every one of us can create our own definition of the word. During these adventures of mine I find myself feeling whole, happy, and motivated. Motivated to fight harder than I ever have. Motivated to continue to share my story, extend a helping hand, and lend an empathetic ear. Adventures help me live a life full of meaning, compassion, and wonder. They help me to continually realize that I am #MoreThanLyme.”
July 1, 2015
“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.”
October 9, 2015
“Courage is my word, a word I have carved into a piece of drift wood sitting in my room. It means ‘strength in the face of great pain or grief.’ Lyme will try and take you for all you are worth, both body and soul. It is a daily, mental and physical, battle field and courage is necessary to fight it.
Ultimately, there are times for rest and times for productivity. The moment we take pity on ourselves is the moment we lose ourselves. I am the greatest advocate against letting a disease or a chronic illness become a person’s identity. Lyme disease isn’t who I am it’s what I have. It’s not going anywhere so I must take care of it.”
February 11th, 2016
“The last thing that inspires me is remembering the big picture. Sometimes if I think too much about the big picture, it can be overwhelming (see question #4), but I pull inspiration from all of the brave souls fighting Lyme right now. While we are fighting to be more than Lyme in the face of so many challenges, we’re also paving the path for future Lyme patients, so that hopefully they won’t have as hard a time getting the medical, political, and financial awareness and options they need and deserve.
While it can be incredibly rough, we are the pioneers of chronic Lyme disease, and with each doctor with whom we discuss our symptoms, each vial of blood that is drawn for testing, each insurance agent that we argue with in an attempt to get our medical bills covered, we are raising awareness and fighting for more: more awareness, more funding, more research, more reliable and successful treatment options.”
February 29, 2016
“This is it, this is my moment. This is everything I’ve worked for, every single day, for four whole years. I look around, utterly surprised at everyone who showed up tonight. Friends, family, fellow students, my students, vague acquaintances… why are they all here? I don’t even remember the last time I've been a good friend, daughter, sister, colleague, or teacher to anyone. I was way too caught up in planning this very event. I haven’t slept in weeks. My entire body is trembling. I’m nauseous, my head is throbbing, my ears are ringing and my vision’s blurry. Any moment now I could fall off this stage and ruin the night in an instant.”
August 2, 2016
“Instead of attempting to battle it, something shifted. The pause that I’m still experiencing began to feel like a gift. Within this pause, I’m becoming closer to myself. I appreciate, respect and trust my Self more than ever. My life is not gone, it just looks different than what I imagined for myself.
I started to see that even though my body feels fragile, I'm the strongest I've ever been. There is joy in moments where nothing seems to be happening. The way the light falls in my apartment, watching the clouds shift, the stillness and the sounds that rest within that stillness are all beautiful and I’m still and quiet enough to soak up every second of it.
The appreciation for the people in my life who are there for me through this grows every day. Within this space, I discovered that I’m still here. So much was stripped away but I am still here.”
August 15, 2016
“Since my diagnosis, I have dedicated my time advocating for Lyme Disease and making sure everyone is aware. I am in the process of starting a photo series with the hope of raising awareness for this debilitating disease; I want to spread awareness because I only found out about Lyme Disease from my own awareness, and through this awareness I received answers.
There are plenty of others out there still searching for answers, getting misdiagnosed, and led to believe that they are crazy. This is all because Lyme Disease is too often misdiagnosed and it has become and epidemic, and left untreated it can lead to a life long struggle.”
October 11th, 2016
“I was diagnosed last May after so many years of trying to find answers, and I took a few months off to heal and help my body recover. Those month were extremely difficult, but I was able to find a few good doctors that helped me find a couple of treatments that truly changed my life. I still struggle with various symptoms: fatigue, muscle and join pain, brain fog, skin issues, etc., but those have been manageable and do not compare to the pain I felt in my back and abdomen.
Over the last few years, things were getting so bad that I had a hard time standing or walking for extended periods, and if I had to for certain reasons, I would sneak off to “use the bathroom,” but what I was really doing was throwing up from the overwhelming pain I was experiencing.
I tried so hard to push through it for years, but it started controlling my life in ways that I couldn’t enjoy the things I loved. But it was October of last year where I started noticing the change.”
October 17, 2016
“I've always been such a communicative girl and passionate traveler...always talking, making friends, going out and having fun! But one day I felt like my life didn't have a meaning. I didn't have any real passions or something to focus and follow the path to get it. But all in all, life was ok. Not as good as I would like it to be, but everything was fine so I didn't feel the need to find ways to make it better. I was just living.
Everything started when I went to Houston, Texas to spend the summer with my family. Everything was amazing, but when I came back to Brazil I started to feel really sick. The zika and other mosquito's diseases were the main health problem here, at the time, so I told myself it was just a common and ordinary issue.”
November 3, 2016
“Lyme will change me, that’s all I know for certain. It already has.
It changes who I am in my body every minute of every day – it has made me acutely aware of the aspects of who I am that I most identify with and it has surprised me with the ease at which I’ve let some of the others fall to the way side. It has forced me to find comfort with myself in the empty moments and it has allowed me the space to relearn myself – to acknowledge exactly who I am when the pace and intensity of last year and all the years before it, dissolve and morph into something new. It forces me to love myself in a new way and perhaps in a real way, for the first time.”
November 13, 2016
“I'm chasing the moments that make my heart pound and my eyes water, I'm passionately loving the people who support me and I'm present enough in my own life to see the beauty in absolutely everything.
I can feel the pressure lessening, and more than anything - I'm so thankful, on most days, to have peace. Anxiety is an unrelenting weight. It settles in and expands, filling your entire consciousness. No other emotion can be truly felt in it's entirety. And free of it, I almost cannot comprehend the magnitude of all of the things I am able to feel.
Even as I write this, I can't help but smile. Because I am so much more.”
November 30, 2016
“It’s a weird thing illness. It makes you see that you are a mortal being and that death, as morbid as it is, is there. That while you are just one individual, your soul, and your being, impacts those around you.
This, along with the realization that had I not been in a place of a privilege, made me see just how truly lucky I was that I at least knew what my disease was, and had means to start treatment. I don’t think that's talked about a lot with lyme, I think about marginalized individuals that are probably suffering with this disease and being treated for another illness, it’s cruel, and I can only advocate and hope that one day we will have a system that will recognize and treat whoever is impacted.”
December 28, 2016
“I’ve been struggling with Lyme since I was seven years old. I’m now twenty six. I’ve had a number of symptom free years but those years came with years of sickness without relief. Within those good years, I was super active. From surfing all day, to hiking, to running countless miles. I lived life too fast and kind of always have. When you live through a chronic illness that no one understands, It’s easy to get carried away in the moments that take your breath away.
I never strayed from attempting to grow and bettering myself.
The last year has been the toughest so far. I have a very active job with the National Park Service and started to spiral out of control in early July. I’ve been off since then because I couldn’t make it through a work day without leaving early or other complications. I have never seen sickness as a way to sink into a personal turmoil and wonder, “why me?” The greatest lesson I learned is to take a step back every once in a while. It’s ok to live life fast, but make sure you slow down and be in the moment from time to time.
Life happens fast and the most memorable experiences are in those small moments. Give yourself a chance to see them. Most importantly, reflect on them.”
January 5, 2016
“But what helps that most in the middle of the darkness is stories and testimonials of others who have faced just what I have. I am not crazy. This disease is REAL.
Knowing: Knowing that I am not “crazy.” Knowing that my pain is real. Knowing that I am not alone.
Purpose: This disease has forced me to contemplate the reason my journey has led me here. Helping have a meaningful outlook on life.
Persistence: Nothing will ever be as scary as those last few years before I was diagnosed, and knowing that I made it through that gives me confidence that I can make it through wherever the universe takes me next.
Depth: Lyme is painful. This journey has been painful, but at 21 years old I have done more soul searching and self-actualizing than I ever would have been able to without the infection. I owe the depth of my character and wisdom to Lyme disease and for that reason alone, I am grateful for this disease.”
April 13, 2017
“What does it mean to be human? I’ve been trying to wrap my head around this question for months. To me, to be human is being able to experience truly intense emotions – fear, joy, love, frustration, anger, sadness, pain, excitement, and hope. I don’t know, but I think that the most able humans are defined by how they choose to experience change.
Here’s a little snap shot of what my life was, what it is, and what it will become.
It has nearly been one year… 12 months, 365 days… since I’ve spent 4% of my life healing from one hell of a disease. It doesn’t seem like too long. Maybe it’s not in the scheme of things. But for me, it feels like a lifetime.
My Lyme story starts out very different from most peoples’. I can recall the exact day I found a tiny round nymph burrowed into the back of my neck. In fact, I have pictures.”
May 3, 2017
“After a while I decided I can't live like this.
I started to fake it until I made it. I pretended I was happy. I pretended to be able to be active even though I was doing mediocre hikes and bike rides. I wasn't going to let this thing kill me and the life inside of me. I one day woke up with a beautiful epiphany of some sort. That I was DONE being controlled. I was going to live a normal life and push through the pain, the nausea, the fatigue, and I was going to LIVE AGAIN. So here I am now, living on my own in San Diego (which I thought was impossible), taking care of myself,working, going on long walks, taking my supplements, going to yoga, and joining in on workouts with my roommates.
I just want everyone to know if you think this thing is killing you, don't let it. You are MORE THAN LYME. You are this world, you are needed, and you can push through this and anything hard that comes your way. I thought it was impossible, yet here I am. Doing the impossible.”
July 26, 2017
“...I wanted to share my story because the Lyme community needs, for the first time in human history, more members of the XY-Chromosome community to express their frustrations and triumphs. If you need cheery, upbeat vibes, perhaps a light skimming (or a swift skipping) of this story is what the doctor ordered, but if you’ve found yourself craving just a scintilla of candor in your life, welcome aboard.
My Lyme disease meet-cute occurred abruptly one fine winter morning in December of 2013 (time sure flies when you’re coming undone). I’m one of those Lyme sufferers who can actually trace the onset of the illness back to a specific 12-hour window, though the jury remains out on what exactly triggered the unexpected microbial rout that greeted me at 7 a.m. The leading theory is that I was administered an unnecessary Gardasil vaccine (one less healthy male) too soon after contracting an acute Lyme infection, by a doctor who stated verbatim during the visit both “God works in mysterious ways” and “Boy do I need some new glasses”, but I digress. Perhaps if Lyme had so much as given me a call beforehand I could have at least tidied up a bit, but the Lyme was in my proverbial coconut, and I assure you, was mixing me up.”
August 2, 2017
“We live in a world that pushes us to think we need to be 100% all the time, that we cannot show our weaknesses, our scars. We cannot tell people that something’s wrong or something has changed. It’s so frustrating to see the lack of authenticity because deep down all we crave for is connection, being able to find someone who is going through the same things as us and realize we’re not alone. With social media we have the incredible power to shed light on the things that matter to us, we can choose to be our own voice and make a difference. So why not start now?
It’s important for me to open up about my story today. I’ve always had this belief that we need to wait for the storm to pass to talk about the lessons we’ve learned from our difficult times but things have changed now and my wish is to share a story of hope and love and learn with you how to dance in the rain.”
September 10, 2017
“Anyone with an invisible illness - be it an autoimmune condition, mental illness, and many others - understand this battle. We're going through hell so we can come out of it stronger than we ever were before it.
I'm still working on myself every single day.
I'm trying to find the balance between my current situation and the life I'd eventually like to be living. To all of my chronic illness warriors out there - and yes, we are ALL warriors even when we feel like giving up - you've got this. You can get frustrated, want to quit, and take a break from surrendering to illness, as long as you never stop. Recovery is not linear, and you are not alone - never stop fighting for your health, it's the most important thing you will ever have.”
November 19, 2017
“Next, I share this with you because there are still many who do not understand my struggle. I do not entirely expect you to understand however, it is my hope that you will begin to approach my situation with the same level of compassion that I would approach you and your life situations. Yes, there are many people with this disease however, my journey has been different than those you may have heard of in the past. My journey has been nothing short of a long battle and while I am currently undergoing treatment, that does not mean this road has come to an end. It is only just beginning. So, I ask that you do not judge my form of treatment, what I choose to do with the little energy I have left or the amount of time it will take me to begin healing. I humbly ask for your compassion as a fellow human struggling to live the life I long to live.
Lastly, I share this with you because it is my hope that this disease becomes something we all take more seriously. It is my hope that through sharing my story and advocating for all of those impacted by this disease, the medical field will begin to wake up and listen to our stories. It is my hope that my one small voice can help trigger a wave of change because, no one deserves to be robbed of years of their lives battling in silence.”
January 18, 2018
Sharing is one of the most terrifying yet impactful things we can do, and Rora has created another way for us to open up. To step out of our comfort zone and say what it is we wish to say, while in a safe, collaborative space, full of others doing the exact same thing.
Getting slightly uncomfortable
With that in mind, I suggest you take a moment to peek into the world of Rora, a creative, artistic, empathetic, and adventurous young woman who has braved the world of story telling in a whole new light.
And we are lucky enough to have her share her Chronic Illness Reimagined as Something Wonderful, with us here, as well as a glimpse at all the other incredible projects she going on, over on her website and Instagram.