There are times when winter is reminiscent of being swallowed by a deep black hole. And if we're not careful, we may forget the light that's right behind the cloud cover.
I hold deep antipathy for darkness, and I often look up at the sky in the wintertime wondering if the bleak gray of winter will come to an end. It's common to hear talk of "winter depression" or "seasonal depression," but I almost never hear talk of what it's really like, or what it even really is. I wish I could say that wintertime was merely a battle with sadness, but I've found it's often much deeper than that, and the PTSD that comes from long months of illness is as real as the PTSD that comes from fighting in a war. In all reality, this is a war for those of us who push through winter with chronic illness, one heavy step through deep snow at a time.
Last year at this time my family was walking right into "The Lyme Flare of 2019." I took up my bed in February of 2019 with pain so deep and penetrating that I couldn't lay on one side of my body for too long without having to sorely role over to another side to release any pressure that was weighing on my pained muscles. I had been in this place many times before, but this time was a complete recession from how I had slowly been improving throughout 2018. Like falling down the stairs or off of a tall cliff, I looked up at this beast referred to as a "Lyme flare" that I was somehow facing once again and felt completely destitute and defeated.
At the time I had been struggling with piercing feelings of insecurity, worthlessness, and the fear that I will never be enough. I had been striving so relentlessly hard to work through life on my own, that my mental health had completely receded. I prayed for relief from the monsters inside me and instead of relief I was left to cope with physical pain and my ability to do anything removed from my grasp. And it was in this time-frame that I resolved to surrender everything to God and hope that by some miracle I could be pulled out of this darkness that swallowed me while I lay helplessly in a bed or on a couch. The "winter depression," as one might call it, was so heavy that I often felt completely paralyzed. I remember at this time that every time I could manage to glance out of a window my eyes would be met with gray skies and cold frigid air.
What I didn't know at this time was that this wintry flare that left me feeling completely lost and pained, ended up being one of the greatest blessings of my life, and resulted in one of the greatest lessons of my life.
Up to this point in time, I was living subconsciously as if I have to do everything on my own for quite some time. I'd never done anything half baked, and I'd always found myself meeting my problems and pitfalls with ambition and hard work. Unfortunately, there are things in life that one cannot possibly do on their own, such as facing monstrosities like Lyme disease, betrayal, or abuse, and I often found myself passing blame to myself for the misfortunes that happen simply as a result of mortality. I blamed myself for my negative feelings, and I numbed myself to my heartaches and hurts as a way to somehow prove that I was strong and that I could heal and survive on my own.
If there was anything that "The Lyme Flare of 2019" taught me, it was that I simply could not do it on my own. I had been driven to a place where burning over my pains with work and busyness was no longer efficient because my body would not allow me to. And as one can imagine, I faced my pains with the quiet allowance of feeling. It was excruciating. But with that, I learned about grace.
It was as if God had answered my cries for relief by giving me permission to stay in bed and sleep for a month or two. I felt His love and support even when all I could do was rest. And surprisingly, life went on. He took care of what I couldn't and I felt great peace and comfort that this was a time of RECOVERY, STILLNESS, and HEALING.
You see, we are not expected to pass through toil and trial on our own. And in a world where I have heard the phrase "God doesn't give you more than you can handle" run freely from the mouths of those who have yet to taste bitter cups in this life, I commonly assumed that there was something wrong with me because THIS was more than I could handle.
Lyme is more than I can handle.
Betrayal trauma was more than I could handle.
Watching parts of my family fall apart because of this disease was more than I could handle.
Living day, after day, after day for years watching my mother in pain and suffering that is seemingly endless is more than I can handle.
And the heartache that comes from isolation and loneliness is MORE THAN I CAN HANDLE.
The truth is that there are many times in life that God will give us more than we can handle and that is simply because we were not meant to handle it by ourselves. We were given grace, tender mercies, each other, and a Savior who loves us tremendously. So as we pour out our aching souls to Him, He gives us grace for grace, and mercy for mercy. Who knew that lying in a bed in debilitating circumstances could teach me that I am enough, that I don't have to "handle" everything by myself, and that just because I can't handle something doesn't mean that He can't.
So now I face this winter with similar anxieties, pain, and emotions boiling to the surface. I still glance out the frosted over windows to see bleak skies and frigid air. I still often find myself in deep weariness of soul because there are some battles in life that do not merely end.
The increase of symptoms and the seasonal depression can still weight heavily on my body and heart, but this year I fight with a changed perspective. This year I fight with quietly loud faith knowing that I am not fighting alone and that I don't have to face the scary aspects of life on my own.
The winter will always pass through where I am. The skies will always gather clouds and the storms with often rage. The cold will often chill us to the bone, and sometimes coats and scarves won't always be enough to warm our troubled hearts. But one thing I can guarantee is that bright blue skies will always appear again. Light conquers cold and dark. And there is often something beautiful awaiting us in the middle of these merely bleak or utterly terrifying winters of our lives.
The trick is to remember in the middle of them that as we strive, we are enough, we're not alone, and sometimes you can even find some beauty within the storm. For I always thought that snowflakes could turn out to be quite beautiful anyway.
God's grace can and does sustain us, and I pray for that as we persist through another winter.
I grew up on Hallmark movies. We all the type... Those movies that always begin with a single, independent, seemingly flawless woman with some high-end job in the city, or some cozy gift shop or bakery in a small town. And after a short intro of this stunningly beautiful girl, we're then introduced to Mr. charming, handsome, CEO, or buff small-town handyman who only wears plaid and manages three small businesses of his own. Along the way Mr. Charming meets Ms. Independent and in less than a day this unlikely couple can manage to save a town... or their small business... or Christmas; all while simultaneously falling in love, finding some reason why they'll never work out, separating for a few minutes, and then later (in the same day I might add) manage to resolve everything. Furthermore, we all know that every Hallmark movie ends with the world's most romantic kiss. And at the end of every Hallmark movie, we all assume the success of that perfect couple.
I suppose that somewhere in my adolescent heart I believed that such perfection could exist. As I grew older I subconsciously held my expectations high and my hopes even higher that someday my Hallmark life story would become a reality. Let's just say I put the word "hopeless" in the term "hopeless romantic." I aimed high and hard for that reality. My perfect reality. My perfect lie.
I'm sure you can imagine my shock when life didn't turn out the way I thought it would. Now, don't get me wrong; for I do not solely blame Hallmark movies for cultivating my perfect lie. I have found society, social media, social norms, and the status quo nurturing this perfect lie more often than not.
I've watched young people my age post fundamentally every Olympic moment they experience in their short lives to their various social media accounts; leaving others relentlessly comparing their personal worsts to everyone else's public bests.
I've observed pictures of endless glamorous and fun first dates. I've scrolled through perfectly edited engagement pictures in perfectly white fields or stunningly flawless mountain ranges. I've clicked on flashy engagement rings and completely enchanting wedding videos. I've liked and commented on many college degrees, job promotions, immaculate maternity photo-shoots, and perfectly clean pressed children. I've seen it all and aimed for it all, only to find that it is not all real.
The problem with this subconscious facade is that it manifested in my very conscious life. I spent my days making never-ending lists of qualities in a "perfect man", only to find that there isn't a man that will check everything off on my list, and the most important things in a man weren't even on that list! I went to college because that's what you're supposed to do when you're young and fresh out of high school, only to find that college wasn't for me and that didn't in any way make me a failure. I've been obsessed with lists, schedules, planning, and my idea of perfect only to find that sometimes the lists and the schedules are significantly less important than God's timing, and that life is what happens AFTER you make plans! My reality was that I flirted with perfection because I thought it looked pretty, and the ugly in life scared me.
I learned very quickly that the easiest way to overcome your fear of the ugly is to face the ugly head on and trust that God will lead you through the painfully imperfect moments in life.
I found myself sitting in a dentist chair the other day conversing with the dental assistant who was cleaning my teeth. She asked me a few things about my life in which I shared with her about my blog, the gift shop I'm opening, etc. I mentioned a few small things about my life that I currently feel good about to which she replied:
"Wow! It's like your life came straight out of a Hallmark movie! You inspire me!"
To be honest, I'm still minorly laughing at that statement because oftentimes there are a lot of things that go unseen in other people's lives. It's natural to miss the sweat and tears that go into starting a business. Many people do not comprehend the long nights and overly stressful days that accompany earning a college degree. There's a lot of hard work and effort that is often overlooked among young people who can only see the outward "perfect relationship." Most people don't see that I have a debilitating chronic illness that adds extra weight and struggle to my daily life. Most people don't witness that agony of betrayal or abuse. The agonizing pain of many things that often feel like more than we can handle is often not talked about or recognized. This then leaves a lot of us wondering what we're doing wrong and why the long hard journey is something that must be borne alone. And then for those who are at high peaks in their lives it leaves them blind to the suffering around them and unknowing how to help, or unaware that it's even necessary for them to help at all!
My life is far from perfect and that's okay! I've lived my fleeting moments of perfection. I've been the young girl at college with the world at her fingertips. I've fallen in love at Christmas and have pranced around with a flashy diamond ring. I've had perfect mistletoe kisses and perfect family photos. I've picked out the perfect wedding dress and posted perfect engagement photos to my social media.
But there are shadows in every picture and wounds that go unseen. I also went home from college due to chronic Lyme disease and have spent years suffering and praying for relief and healing. I've passed through "a boyfriend for Christmas" only to be met with a breakup in June. That perfect mistletoe kiss only lasted for a second, and that flashy engagement ring meant nothing when glaring straight into the face of dishonesty and betrayal. Those perfect engagement pictures never lead to a wedding, and those family photos were originally meant to be wedding photos and are missing a few members of my family.
And all of these imperfect things were things that were and are out of my control simply because they are a result of mortality.
So, life is far from perfect... where's the hope in knowing this?
The hope is in knowing that the value of your life is not calculated by the sum of your perfect moments or the moments that everyone sees on social media.
Life is not about the flawless moments that take your breathe away. Sometimes it's about the moments where your heart feels like it can no longer beat because your grief is too great to bear. Occasionally it's about sudden rainbows in the sky or dancing in the rain. More often then not it's about the moments in tears on the bathroom floor because we've all be there at one point or another. Sometimes it's about laughing so hard your stomach hurts. Often it's about embracing through the hard and wiping tears through the sorrow. It's about long nights and headaches. Intermittently it's about the first good night's sleep you've had in forever. Frequently it's about worrying and praying for a good outcome. Sometimes it's about problem-solving, and hand-holding, and enduring, and pouring your heart out to God in prayer. You see... life is the sum of all human experience because without the pain, sorrow, and imperfection, we would have virtually no recollection or appreciation for the joy, love, and beauty that comes in life.
The most beautiful moments in life, are the moments that are borne out of great suffering. They come in the form of sudden beautiful vistas, sudden miracles, and moments of peace, hope, and unexpected smiles. Without opening up about the ugly imperfect moments of life, there are no hands to hold when you are called to pass through your life's ugly. So instead of hiding in secret, may we all be safe spaces for people to share their imperfection. Because becoming perfected for the eternities is all about striving to overcome the imperfect in mortality, and thanking God for the beautiful journey that life is.
"Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. Most putts don’t drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. Life is like an old-time rail journey–delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride." (President Gordon B. Hinckley, Ensign, Nov. 1984:86 )
We have Christ to heal us from the imperfect of mortality. And we have each other to aid in the healing process if we so choose to lift each other in love and support. May we all share our imperfect. Because at the end of the day... all of the outward perfection is just a lie anyway.
I once used to be a young girl that found every detail in life to be absolutely magical. I used to record every moment that seemed completely enchanting on little strips of paper, and I'd fold them up and put them in a small jar that I kept on my dresser. And as I now look back on those moments that I never would have recalled otherwise, I'm reminded that every one of those moments was perfectly ordinary, but my mind recorded them as memories that were special.
I've jumped in huge piles of golden leaves whose crunch sounded like a symphony to my adolescent ears. I've smelled fresh baked cookies only to run into the kitchen carefree and joy-filled. I've balanced on sidewalk curbs and rolled down hills with the only side effect being pure laughter. I've watched clouds form shapes in the sky almost like magic, and I've walked barefoot in the grass without a worry in the world.
I've taken long walks with people who make me wish that the path we were on wouldn't end. I've watched sunsets and prayed in small groves of trees. I've felt my heart skip beats because I thought I was in love. I've waded in streams knowing without a doubt that my feet would leave footprints in every place I've tread, and known later that footsteps and hand-prints can remain in hearts as well.
And now... I grasp these beautiful moments tight because throughout the change and pain in life I find it significantly more difficult to experience these things. Or perhaps the difficulty is less from the lack of opportunities, and more from the lack of my ability to see artistry and charm because life can often be coated in tragedy, heartbreak, and pain.
So how does one compile all of the magic and the pain? How does one process the Olympic moments with the pitfalls and darkness? Perhaps the beauty of life is that we are not required to live it all at once, and we are not required to live it all by ourselves.
So, for now, I'm putting one foot in front of the other and leaning for dear life against the One who has experienced this all before. For now, I'm praying for eyes to see the magnificence that is so graciously placed before me, and I'm praying for fortitude in every ounce of pain and suffering that I may experience.
And most of all... I'm praying for all of the cuts and scars to be healed because carrying this all on my own has proved to be soul-destroying.
And then I seek for extra faith and practice deep trust. Because my God and my Savior have never let me down, left my side, or broke my heart, so why would I doubt for a second His infinite ability to heal my body, my heart, and my soul? For as I practice and reach for daily faith I'm reminded that God is writing an unforgettable and breathtaking story for me, and He's simultaneously preparing me for glory and joy that I can't comprehend in this life.
So may we all remember the enchanting moments that are perfectly ordinary. And may we all learn from life's agonies that prepare us for life's greatest joys. For no being can live in a state of endless bliss without missing some greater exquisiteness, and it's very possible to be in the midst of suffering while simultaneously witnessing miracles. There is room for all of it in life. And we must remember that there is a purpose for it all in life. As we do that, we'll walk paths that will bring us to our greatest peace and joy. And that's worth living for.
"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
I wish I could tell you that it was going to be easy. I wish I could say that the road of Lyme disease was something that everyone understood and that there wouldn’t be moments of disappointment or despair along the way. I wish I could explain that there aren’t very many tears and that there is an absolute solution to it all. I wish I could express to you that it wasn’t as mindboggling and scary as it is.
The truth is that Lyme disease is one of the most difficult adversities that a human being could experience. Lyme is commonly all encompassing, meaning that it will impact every ounce of your life. And at some point, you’ll find that you’ve been changed forever and that there is no going back to the person you were before. The day will come that you’ll glance at yourself in the mirror and you won’t recognize yourself. That first day of sudden realization will be met with tears and grief, but with time will be transformed to acceptance, gratitude, and hope.
The reality of Lyme disease is that all of the pain and hardship may be strikingly real. However, I can promise you as well that the reality of Lyme disease can also have an elegant beauty about it that is found deep within the veins of your pain and struggle. A beauty that is born from your strength, resilience, courage, and determination to continue forward the best you can despite your difficulties.
There may be pain and tears of sorrow, but there will be days of relief and rejoicing of your victories. There may be anxiety and despair, but there will also be moments of peace and gratitude that runs deeper than it ever did before. There may be loneliness, but there will be a connection and love from God and others deeper than you have ever imagined. Furthermore there may be days where you feel unlovable and worthless, but your continuing faith and persistence will prove otherwise.
You see my friend, it may be piercingly difficult at times, but it is those difficulties that will shape you into the glorious person that you were destined to be. For progression, growth, and grace bloom out of the deepest adversities.
You are not alone. You are strong. You are loved. Don’t give up. You may have Lyme disease, but Lyme disease will never have you. Your body has the capacity to heal and there are resources and protocols out there that can and will heal you with patience and persistence. There is hope and healing ahead.
Stay strong my friend. For there are battalions of people and angels rooting for you and cheering you on in your journey of Lyme.
A Fellow Lymie
This post was inspired by Lyme Now who has kicked off Lyme awareness month by starting the #lettertoalymie series. You can check out their website and read a lot of other letters to Lymies by clicking here!
Lately, I've found myself pondering the pure and seemingly sparkling crystals that so frequently fall from the sky these days. Snow is a funny thing in that there is no one snowflake that is exactly the same. Each has its own Divine design, and the path that each snowflake takes to reach the ground is unique to that particular snowflake and looks different depending on its time and place.
Similarly, we as human beings walk different roads, come to different bumps and turns, and come equipped with our own unique design that God blesses us with when we came down here. I often wonder why my path in life often seems so different than other's may be... but then again I'm sure that all of us experience that daunting perception at some point in our lives.
With that in mind, I've watched many people suffer from chronic illness and the wide range of differences that come from being sick. This phenomenon is something that would do everyone some good if they took the time to look into the hearts and minds of these people who suffer on many different levels. The fact of the matter is that there are no two chronically ill lifestyles that look the same. We're all simply moving along on our own individual paths, trying to survive the best that we can.
The words "chronically ill" are usually accompanied by a substantial amount of expectations and perceptions from others. There's a certain "type" and "look" that apparently we're all supposed to have, but the reality is that some of us just don't have that "look" but that doesn't make our lives any easier, and it doesn't take our painful circumstances away.
The majority of people view illness by the book. When you're sick you lay in bed with body aches and head congestion while consuming large amounts of ibuprofen or Tylenol to relieve that pain and wait for it to pass. It may take a few days of discomfort, but it passes, and you move on with daily life. Others simply push past the pain and continue their daily lives and are lucky enough when their symptom cease, despite the need to persist in their prior commitments and responsibilities.
Now when you're REALLY sick it's a little different. When you're in unbearable amounts of pain, you rush to the doctor, load up on pain medications, and wait for hard-working health experts to diagnose and treat you. And after countless tests and hours, these loving and caring doctors treat you with medication or surgery, and you go home ready to recover and your pain eventually passes so you can live a normal life.
This is what illness looks like, right? This is how we manage our health and wellness so we can feel vitalized and renewed, right?
A flu virus is one thing, but being chronically ill is an entirely different paradigm that requires a lifestyle change and a realization that maybe being sick isn't what you thought it was in the first place.
Many chronic illness patients do spend a lot of time in the hospital, and many chronic illness patients do treat their symptoms with pain medications, which is definitely not something to downplay and consists of an incredibly difficult road. But my story and many other's stories are different, and that doesn't make any of our pain less valid or less painful.
What most chronic illness patients don't tell you is just HOW MANY doctors they had to go through in order to find one that would finally help. What a lot of us don't talk about is the PTSD that comes from how badly we're treated by people, and the desperation we all have to find answers. And what a lot of us don't tell you is that hope may not be found in a doctors office or in a medication, and that doesn't mean that we're crazy or that all of our symptoms are psychosomatic. It simply means that our path is different, and our answers are different.
I'm never in the hospital.
I've don't take any medications.
I treat my symptoms with natural food, remedies, and protocols.
And I never managed to find one doctor in my area that helped me very much.
And the things I'm doing now are HELPING ME TO HEAL!
My symptoms can range from tremors to being light-headed, to passing out after taking a shower, to skin lesions, panic attacks, extreme fatigue, and severe abdominal pain. But sometimes the pattern is that one day I can feel healthy and strong, and the next day I can hardly function at all.
Sometimes I feel like I'm losing my mind.
Other times I feel free and hopeful.
I pray every day for the feeling of the floor falling out from underneath me to cease, and for the grief that comes from illness to pass. Some days it does. Some days it doesn't. And that's just a normality for me and many others.
Chronic illness is a wide spectrum of struggle and perseverance, and there is no one size fits all. For some of us, it's doctors and hospitals on the daily. For others, it's constant protocols that never seem to end. And for others, it's diet change and learning how to be healthy half of the time and sick the other half of the time. For others, it's all of those things combined and it's often overwhelming and exhausting trying to keep all of the daily health routines straight.
Whatever it is, and no matter your place in your journey... your pain is valid and I urge you to heed not the expectations and perceptions of others who have never walked in your shoes. It would do the world some good if all of us could increase our love and compassion towards those who suffer in any way. The more we're aware of the suffering around us, the more empowered we can be to pull others out of the swamps and dark places that we all can find ourselves in.
Despite the difficulties and the struggles, there are some things that all chronically ill people have in common:
All of us are warriors. All of us have battled sore affliction. And all of us are beautiful, resilient people who are seeking to live life to the fullest and emerge out of the norm of society to bring light and healing to a world that craves those things. As we're sculpted into the warriors that we are, we're transformed on our path and seek to touch the world with our newfound being, just like the snowflake that travels to the ground to ultimately bring beauty into our lives and nourishment to our earth.
I sense extreme pressure that builds up in my chest and makes my nerves tingle from my heart all the way to the tips of my fingers. Pressure that makes me fear the future and gives me a severe distaste for my present. Pressure that brings tears to my eyes when I least expect it and leaves me looking at myself in the mirror wondering who that girl is.
I'm not completely sure where this pressure comes from, but I have a slight notion that it originates from past traumas. Memories of insufferable pain from Lyme disease for long nights. Recollection of people that I love making promises they never intended to keep. Thoughts of being hurt by the harsh words and actions of people who don't even seem to understand how much effect you can have on another's human heart. This odd awareness for past experiences flashes through my mind when I least expect it, and leaves me feeling like something inside me is crawling up my spine. I can't stand it, and for once I'd like to just be me and not have to worry about being crushed again by the insensitive human temperament that so many seem to possess.
I want my heart back, and I want to feel comfortable in my own skin again around other people.
When I'm occupying my own space, I get to experience a sense of acceptance of the girl that screams to be free. In my sanctuary, I have the privilege of being that girl that doesn't eat sugar and experiences a thrill from eating healthy food. I'm that girl that can sense things that others can't and is allowed to be highly sensitive to smells, tastes, sights, and the little beauties that are all around us, and it's not crazy, it's insightful. I'm that girl that sings her favorite song as she's walking down the street and wears maxi-dresses for no special occasion, just because she can. I'm the girl that jumps up and down when she gets excited over seemingly insignificant things, and I'm that girl that obsesses over to-do lists and loves schedules, but also loves feeling free as a bird! I'm the girl that never does anything half baked, and it doesn't matter if everyone else executes everything in their lives with half the effort, because she can be happy living in her full and vitalized life. I'm the girl that lavishes my entire heart in her endeavors and thoughtfully verifies that the beautiful living creatures that she comes in contact with can experience the intense Divine love that she can bestow.
I'm also that girl who can be smiling one minute with gratitude that she's not in pain and crying the next because coping with trauma from illness is SO HARD. I'm that girl that can laugh at the humor in life one second and be on her knees in prayer the next praying for release from severe anxiety and depression. I'm that girl that can be on my feet and doing yoga one day, and in bed with a heating pad hardly being able to move the next, because Lyme disease sometimes breaks you. But when I experience my whole being in a safe place for myself, I don't feel completely insane for the various and rapidly changing ups and downs. When I'm safe, I can accept that I'm just a girl with a chronic illness who is trying to learn how to heal to the best that she can and sometimes she's dissatisfactory and defective at it, other times she thrives, and that's okay!
In the presence of large groups of people, everything changes and I often find my indestructible and merciless brick walls building up around my heart as a protection against the naysayers. I often can feel the lock and key as I stuff my personality in a corner for the meantime. I often feel trapped to be like everyone else, and if a little part of me comes out it could be dangerous in the hands of people who disagree or misinterpret. I often find myself performing the act of the perfectly composed woman who wasn't just in excruciating pain the night before and can be wherever it is I need to be because I'm expected to be there, even if my body cries otherwise. Concealing my thoughts, holding my tongue, not venturing too close... Because if you unexpectedly get too close to someone who bites... you're left suffering on levels that they don't understand simply because they haven't experienced their severe adversity yet. Protecting myself is chaining, exhausting, and lonely. And for that reason, I choose my safe space as often as I can.
Everything changes in the presence of people who misunderstand and misinterpret. And the unfortunate truth is that so many people throw wrath and fear at others simply because they lack the ability to reach their hearts into someone else's. So many lack the ability to be raw and honest with themselves and others about their lives. We all struggle, and if the human struggle was a shared effort where we all sustained each other, there wouldn't be so many who feel the need to live a double life.
I often wonder what it would look like if it were possible to compile all the tears from human suffering into a box, how big that box would have to be. And if people had a chance to witness how large that box was, if it would soften their hearts in a way that made them slightly more sensitive to the people around them and slightly more aware of the hearts that are crying out for help. If we knew how deep other people's waters were, would we take extra time to stop and help them so that they don't drown? And if everyone stopped and helped the people in deep water, maybe all the water as a whole would be lessened to the point where we could all patiently wade through less troubled waters together. Maybe if we all decided to be a little more real, and a little more honest... then maybe those who suffer wouldn't feel the need to live a double life because then they would know that they weren't along and that there were strong hands waiting to lift their aching hearts.
God doesn't expect us to live out our lives in cold hard shells so as to not let other's notice our pains. God desires us to love and lift the hands that hang down. God wishes us to let love penetrate so deep that we can all feel His Divine love through each other. I hate the pressure I feel to live a double life as a chronic illness warrior (and I know I'm not the only one), and I've found that I'm more effective at bringing light into other's lives when I'm simply striving to be my best self. Maybe all of us could come to that realization in a way that could change the world.
It recently occurred to me that I've been fooling myself. I've faithfully proclaimed on social media year after year since I was diagnosed my deep hope that the next year will be easier, or that it will be better than the year before. I've hoped, and prayed, and fought my way into society's view of a "better" and "easier" life, only to find that this "easier" life that I'm seeking for doesn't exist. There's no such thing as "easy" in the vocabulary of a chronic illness fighter, and it turns out that the moment you think that the chronic illness battle has become "better" or "easier," something else painful and heartbreaking will come along that will try your resilience and test your nerves. And then after you've made it through that trauma, your illness will flare again. Due to this eternal pattern that keeps kicking me, I have finally reached the point in my life where I can say that I am no longer hoping, wishing, or praying for an easier year ahead!
Sounds like I've reached the point of intense embitterment, but I wouldn't exactly call it that. In fact, I've finally discovered that this statement that I'm making isn't a negative or chaining statement at all. In fact, admitting to it is probably one of the most freeing experiences I've ever had!
For as long as I can remember, my family's motto has always been "we do hard things." I was taught growing up that working hard and doing things that appeared to be difficult would bless my life and create a stronger person inside me. I was taught that striving to achieve things that were seemingly out of my reach was healthy and something that should be practiced on a regular basis. Back then it never occurred to me that there was something harder out there than Saturday morning chores, striving for a 4.0 GPA, and losing a best friend. Hard things came and went when I was young, but eventually, there will come a time in all of our lives when those hard things won't just leave. There will come a time when those hard things stick around, and you'll find yourself on your knees begging for relief more than once.
I've been in that place for years now, and I think I'm finally beginning to understand and live the truth that adversity and affliction has a divine purpose. Things may not get easier in the moment, but that's okay. Because God promises us better things through our suffering and God sustains us every step of the way. It's through the hard things that I've developed sensitivity to God's precious mentoring that He blesses my life with.
C.S. Lewis says that "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world." I think my world has been roused and it's been a loud and painful awakening, but completely worth it. Many of us have probably experienced that this year, and what a blessing to say that we've learned this lesson firsthand.
I'm not going to begin to pretend like I have life all figured out. In fact, I often find myself in prayer expressing how unsure I am about life. But there is one thing that I do know:
Sometimes life is absolutely awful. Sometimes it's blood, sweat, and tears to make it through the day. And sometimes it seems absolutely unbearable. Other times life is magical, joyous, romantic, and absolutely beautiful to the point where you can't seem to breathe in enough of the moment, and you wonder what you could have possibly done to be blessed with such a perfect moment in life. And other times life is somewhere in between... mundane and boring. And the reality is that in order to live life to the FULLEST, every single one of these experiences is absolutely necessary. Because without the pain we wouldn't appreciate the joy. And without the mundane, we wouldn't appreciate the magic. And the glorious truth is that we have a loving God who sustains us through it all. How loving and merciful He is to enable me to do the hard things, even if they seem to be never-ending.
So this year I'm not praying or hoping for things to be easier. I'm hoping and praying for the strength to endure the hard, the wisdom to appreciate the magic, the patience to remain hopeful through the mundane, and the courage to submit to God's will even if it's more difficult than past years. May we all have the ability to discover those places of balance and vitality in the year to come.
I'm Claire Dalton, I'm 22 years old, and I suffer from endometriosis, anxiety disorder, depression, arthritis, joint pain, muscle pain, chronic fatigue, and a whole host of other symptoms that can be wrapped up in a pretty little package that is referred to as CHRONIC LYME DISEASE. I'm bold, strong-willed, and driven, and when my quality of life was ripped out from underneath me, I desperately needed all of those qualities to keep myself alive. My story is a story of blood, sweat, tears, and a family burdened with Lyme disease who chose not to quit and still chooses to stay and fight every day. Lyme is brutal, but not brutal enough to kill us.
My story begins when I was a teenager my junior year of high school. I was sixteen when my mother became gravely ill and bedridden in a more permanent manner. I don't ever remember my mom being completely healthy. She frequently experienced flares of illness of every kind throughout each winter season, and in the summer it would improve. Come to think of it, this was my pattern as well, but we never gave it a second thought because we were so frequently met with comments like, "it's normal for kids to be sick all the time" or, "all kids are frequently sick during flu season." That was the belief in my culture, my home, and my family, and we didn't realize how wrong that statement was until one day my mom went down and didn't come back up. One day everything simply plummeted... and this time waiting it out didn't make it better.
I went to school like a normal teenager. I looked like a normal teenager. I worked hard and studied hard like a normal teenager. But my home life was far from normal and I was often filled with overwhelm and fear because I never knew whether or not my mother would be alive when I came home from school that day. It almost seemed at times like we were simply waiting for death to pass over our house because death would mean the release of pain for my sweet mother. Our home was often filled with moans, groans, screams, tremors, and seizures due to how much pain she constantly suffered from. I desperately wanted my mom to live, but not like that. Not while death seemed so close on such a constant basis. Hospital runs, medications, being forced out of our house, trial and error of every diet under the sun! It was a living hell in my house, and I prayed so often for the feeling of the floor being ripped out from underneath me to cease.
Medications made things worse. Doctors assumed my mother was psychologically unwell. Friends and neighbors stayed away in fear of "catching it" or simply not knowing what to do. My mother went undiagnosed and misdiagnosed for a seemingly endless period of time. We craved a diagnosis. We craved answers. We craved an ending to the constant suffering.
In the year 2014, we finally received a diagnosis. Chronic Lyme disease. We received a diagnosis only to find that there is no proven cure and no doctors in our state that knew very much about Lyme disease. We searched elsewhere for answers and protocols, and the long and arduous journey of healing for my mom began.
Meanwhile, I worked hard to graduate from high school. I recall major brain fog, severe anxiety, extremely painful menstrual cycles, and a constant state of stress in high school. It never occurred to me that I could be diagnosed with the same disease I listened to my mother scream from night after night, but my first semester as a freshman in college was my trigger, and I went down fast.
I remember existing in a constant state of panic in college. Nothing ever felt right and my heart and nerves often felt tightly clenched as I spent many dark nights experiencing panic attacks all by myself. My heels and feet would hurt and ache every time I walked across campus to the point where I tried buying gel inserts for my shoes that never worked anyway. I couldn't remember hardly any word that came out of my professor's or tutor's mouths, and I had to come home and sleep for three hours just to make it through each day. I suffered from severe excoriation disorder and would claw at my own arms until they bled and would leave massive scarring. I had major joint and muscle pain, and my menstrual cycles were nearly unbearable. My hair kept seeming to fall out in massive amounts, I'd break out in skin lesions, and I was losing weight faster than I could count.
"Your test results came back positive." That's not a sentence any college student wants to hear, but I heard it and my heart sank. Doctors appointments, tests, and 30 vials of blood later, I knew I had Lyme disease. I also knew that if I didn't change my lifestyle and get on treatment soon, I'd end up being the one in screams.
I started my first treatment while I was still going to college. At the time my mom had been on a cancer protocol for about a year that was known for being very beneficial to Lyme patients. So far that protocol had healed her to the point where the screams had stopped and there were some days that she could get out of bed. We decided at the time that the best route was for me to go on the same treatment. This began an entirely new way of living.
I remember throwing everything out in my pantry and changing my entire diet. No more sugar, dairy, meat, gluten, citrus fruit, tomatoes, or spices of any kind for a while. I didn't know how to cook and I submitted to eating bland food for quite a while. I remember sleeping with oxygen tubes to prep for treatment the next day. I recall waking up early, taking all my supplements and my treatment, and hoping that I wouldn't herx too hard so I could make it to all of my classes that day. At the end of every day, my treatment required me to record all of my vitals and rate each symptom from one to ten. I so often marked high numbers on each symptom, my heart rate was always in the hundreds, and I always seemed to be bone cold. My grades dropped dramatically, and everything felt awkward and uncomfortable. I had good days and bad days, but the bad days usually left the good days as recovery days. The problem with Lyme is that it usually gets worse before it gets better. As was the case with me.
I left college before the semester was over. I felt like a failure, but I fell to the floor and cried tears of joy when I finally reached home that day. It felt so good to be home. It felt so good to know that at least now I could be sick in my own house. I looked in the mirror that night and wondered who the girl was that was staring back at me. I pleaded to God for help. I knew I had a long road ahead of me. I just don't think I knew what that entailed.
The herxing was brutal at first. I remember my first major herxheimer reaction was so excruciating that I lost my ability to get up and walk to the bathroom by myself. I recall my head throbbing every time I opened my eyes, and my entire body hurt so bad that I couldn't lay on one side of my body for too long because the weight of my own body was too much. I remember everything spinning, and passing out in front of my bedroom door after I attempted to walk by myself. What I didn't realize then was that overcoming that herx was the first of many baby steps to getting my quality of life back.
After a year of that treatment, I changed my diet again. I gradually reintroduced spices, dairy, gluten, and meat back into my diet, taking care that everything was organic, whole, and clean. I had no desire to eat refined sugar again, and I still don't. I found myself gaining some of my life back as symptoms began to peal off little by little. The severe pain that came with endometriosis was torture every month, but the improvement of symptoms the other times of the month gave me hope for healing. I continued trying different protocols. I tried high dose vitamin C IVs, magnesium injections, large amounts of supplementation, and light exercise as I could. Some things started to clear. Others didn't. Lyme disease always seemed to leave me frustrated and confused because things would come and go and extreme pain left me scarred with memories and fear of if or when it would come back.
The Sauna Detox Protocol is the treatment that CHANGED MY LIFE. After a vigorous two months of sweating it out in a sauna, I began to feel like I had my life back. My skin cleared, I began to gain the weight that I had lost, my hair started growing back, my pain lessened, and the herxheimer reactions decreased. I gained my energy back and my panic attacks eased. My brain fog, fatigue, and cognitive dysfunction lessened, and even my endometrial pain improved! I never believed that I would get my life back, but to a point, I did. I don't have non-stop excruciating pain anymore, and I can't begin to express how thankful I am for the healing that I have been able to experience in the past two years.
Now, I have the unique opportunity to look back and contemplate everything I've been through, and I often take time every day to allow myself to feel the emotional pain that comes from experiencing such large amounts of physical pain. I still struggle with severe anxiety, lower abdominal pain from Endo, and excoriation disorder and I'm still fighting to overcome. I now treat my Lyme with AmpCoil, and I've found that if I don't regularly practice treatment and self-care my symptoms will reappear. What helps me function is consistent 8 hours of sleep every night, drinking half my body weight in oz. of water every day, and only consuming organic and whole foods.
PTSD is a real thing that Lyme patients suffer from, and I often find myself having flashbacks of severe pain flares that leave me paralyzed for a time. With that said, I often find myself holding onto God's love in those moments, and that gives me a reason to keep going and keep striving for a cure. I am not "cured." I do not live an easy and symptom-free life at all times... but there have been so many blessings and miraculous amounts of healing that have taken place in the past couple of years, to which I am incredibly thankful for.
To anyone suffering from a chronic illness... I've learned that even in the darkest nights, there is HOPE FOR HEALING. Some of us in life are called to pass through the darkest nights and the scariest of circumstances, but those experiences are for our refinement and for our good. The road ahead may be full of darkness, but there's always a light. I've now gained the wisdom to know that it takes more than one protocol to find healing. It usually takes many tools in your toolbox to survive the depths of Lyme disease. I've also gained such a love for the concept of suffering and why some are called to pass through such deep adversities. I'm learning every day how to accept my illness and love and appreciate the good moments. I'm learning to love my scars, for they are my battle wounds that tell the story of how I overcame something horrendous. I'm learning how to be patient and flexible with God's timing instead of my own. And I've gained a passion for loving and helping people who suffer through dark misfortune and come out stronger in the end.
Chronic illness warriors are INCREDIBLE people! If you want to learn about resilience, dedication, desperation, hard work, and perseverance, love somebody who is sick. Because when you get sick for the long haul, something inside you begins to bloom that is the only thing that will keep you going during your most desperate nights. And then one day you'll wake up and realize that the bloom inside you grew into a garden of flowers that you didn't know you were growing.
Some days are good. Some days are bad. Some days are bland and some days are more than I feel like I can handle. Progress is not a constant upward motion, but a roller coaster that makes you want to scream at times and laugh at others. It's all about learning how to enjoy the ride. This is Lyme disease. This is invisible illness. This is my Lyme life.
You can find more information on the Sauna Detox Protocol HERE
I frequently travel through my life with a sense of a double identity as our society loudly screams frivolous ideas of success and popularity that seem to be difficult to ignore. And as I attempt to "fit in" with my peers, I always find myself feeling slightly fake and two-faced.
As a woman living in a world brimming with photo-shop, snap-chat filters, and unrealistic glimpses into other people's lives via social media, it's easy to blindly chase after the false belief that in order for me to be a thriving influence in society I must be living up to society's standard: I must be going to school full time, holding a job, eating the best tasting food, traveling to the most exotic places, fulfilling all my callings in the church, and I must be stunningly beautiful every day. I must never have problems... and if I do I must keep my mouth shut in order to avoid causing anyone discomfort. If I experience emotional pain, I must quickly throw it under the rug and pretend it doesn't exist. I must smile... but not too wide and not too frequently. I must be happy... but not too emotional or enthusiastic. I must be tired... but simultaneously drill myself to accomplish all the to-do lists, schedules, and appointments. And while I'm juggling all that... I must also be having the most fun and posting it all to Instagram and Facebook so that everyone else can feel bad about how they're not having enough fun. Thank you social media for this unrealistic and impossible view of reality.
I've tried to be that girl. That girl that has perfection in the bag. That girl that appears to have vitality and richness overflowing in her life. That girl that doesn't talk about her inward struggles in fear that she'll make other people uncomfortable or that she'll give the wrong image or idea. But that girl is fake. That girl isn't real. That girl is living a double life and because I've always tried to be that girl, it makes it easy for my peers, associates, and family to assume that I'm not really sick.
"You don't look sick."
"She must be faking it."
"You're a beautiful girl that probably just feels like you're not getting enough attention."
"You must thrive off of attention."
Some of the comments that all chronic illness warriors hear on a regular basis cut us deep because we're simply trying to survive in our own skin to the best of our ability. What's worse is the words that go unsaid. What's worse is the gaping mouths and blank stares we receive that translates to the disbelief that any person actually suffers on that kind of level. What's worse is the attempt of someone apologizing and stating how hard that must be because they don't know what else to say. The silence is just as painful as harsh words simply because it traps us in the corner of disbelief where we constantly feel the need to prove that we're sick.
So I'll be the first to admit it... You're right... I'm faking it.
I'm faking the smile on my face when I'm trying so desperately to hold back tears. I'm faking that I'm feeling okay when I'm usually riddled with muscle pain, nerve pain, or severe anxiety. I'm faking that I'm living life pain-free when there are so many times that I feel like I'm suffocating under my own skin. I'm faking my sanity when I feel like there are bugs crawling under my skin. I'm faking that I'm flying when at times I feel so utterly close to drowning beneath the pressure of it all. I'm faking that my heart is whole and complete, when really it feels exhausted, broken, and bleeding.
When these things that I'm faking are expressed out loud, I simply feel inadequate. I feel like I lack the ability to ever be "good enough." I feel like it's my fault and if I just tried a little harder.... maybe my pain would subside. I feel ashamed of my own existence, and I often wonder why at times it feels like the world keeps turning while my time stops and I'm trapped in one place until my inward storm chooses to cease for a while. And as these feelings envelop me, the vicious cycle of feeling forced to "fake it" starts all over again.
We live in a society that believes that pain can be relieved with substances. We cope with alcohol, drugs, pills, porn, food, or anything we can do to numb our afflictions. But at some point, we have to realize that the SUBSTANCES DO NOT HEAL US. The substances numb us to the harsh reality. Instead of relying on substances, we can rely on God and on each other so we don't have to feel the desperate need to "fake it till' you make it."
LOVE is the key to healing. "For God so loved the world, that he gave his only begotten Son." (John 3:16) God loves us, so He gave us His son so that we don't have to suffer alone. Christ knows of our pains and our sorrows, and He loves us all the same. If we strive to be more like Him, we can act as a rock and relief for others who are suffering. We don't have to have all of the answers for the chronically ill. We don't have to take their physical pain away. But what we can do is seek to understand the depths that others and in, and then... we simply love them through it.
Here's the joyful message of it all... Because I have a Savior who loves and sustains me... I can find pure joy through pain and illness, and I'm not faking it. Because I know that people are more important than substances, I can understand that after I walk through my own furnace of affliction I develop the ability to love others through their afflictions. I also understand that as I suffer I gain a greater capacity to later help others which in turn helps me. What I stop trying so hard to fake it, I can be true to myself in enduring pain and happiness.
So the next time that you meet somebody, or the next time that you're talking to somebody... "treat them as if they are in serious trouble. And you will be right more than half of the time." (Henry B. Eyring) It would all do us well to bring our shallow existences to a halt. The next time that somebody says they are doing well and you sense that they are not, do not believe the words they speak. Believe the silent plea for help in their eyes. Believe their subtle look of discouragement and pure exhaustion. Believe that little voice in your head telling you that maybe this person needs help. Believe the inherent ability you have to love somebody through their pain.
We all have that power. May we seek with pure diligence to know how to help ignite that power in ourselves and in others.