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.
For this post Chronically Beautiful teamed up with The Hello Lovely Project. The Hello Lovely Project exists to promote self worth in young girls and women illustrated through pictures and stories. In a day and age when women's contribution to the world is so often objectified and diminished, it's more important now more than ever that every woman recognizes her Divine worth. The heart of this project rests in the fact that women are so much more than what you see on the outside. Women are human beings that have hearts that pump blood and determination through our veins, lungs that breathe air and influence throughout our society, and minds that hold treasures of knowledge and wisdom that ought to be recognized. Every woman has Divine gifts and Divine worth that makes them absolutely amazing, and for some it's incredibly difficult to see the beauty and worth that lies within. For the Hello Lovely Project, we strive to let that truth penetrate the hearts and minds of women all over the world.
Let's face it... the years that we all walk as a teenager are always the most difficult, and my road to discovering my individual worth began here. Bottom line: I hated the mirror and I never felt like I was ever enough. I spent countless amounts of time in Sunday school lessons and seminars about beauty and worth and yet I couldn't quite seem to visualize in my head how it all applied to me. I was told time after time by my peers how I wasn't smart enough or how I lacked in one thing or another. Due to physical disability, I wasn't as quick to think on my feet as some of my friends were, which lead me to believe that I was just plain stupid. Stupidity was also implied multiple times through that sarcastic comment that rolled off the lips of my peers on multiple occasions: "It's a good thing you're pretty because you don't have much else going for you." Those words cut deep as I let them penetrate my heart and allowed them to affect how I viewed myself and my worth. For these reasons, I rotted in the belief that if I could look "perfect" then maybe I might have something to offer in the world.
At this time in my life, I spent a lot of time watching beauty "how-to's" on Youtube, and wondering why my hair never seemed as shiny, or my teeth as straight, or my lips as full, or my skin as clear as all the girls in the videos. How did they master this idea of "perfection" and yet no matter how hard I tried, I would never be enough. No amount of makeup or hairspray could help me reach the level of physical "perfection" that I could see in others. And yet I didn't pause a minute to strive for anything less than excellence in my appearance.
As you can imagine, living in a way that makes everyone else happy and comfortable with you can be very exhausting, and I often wondered what it would be like if I ever resolved to show up to school as someone who was comfortable in my own skin (without all of the extra makeup and hair care). The truth was that I couldn't ever get myself to take that step due to fear of what others would think. I was often told by women that "beauty is pain" anyway, so I figured that it was normal to never find true comfort in my appearance. The truth was that I never was comfortable in my own skin. I didn't like my own face. And I didn't want to think about what I actually looked like because my looks were seemingly "all I had to offer."
Let's fast forward to post-graduation and my first taste of young adulthood. How does one's self-worth play a part as a young woman attending college who had just been diagnosed with a debilitating disease? I was diagnosed with Lyme disease soon after I began college, and naturally, the obsession I had with looking perfect came to an end. I lost 15 pounds my first semester of college (keep in mind that I already only weighed 125 lbs and I'm 5'9" in height), and could often feel and see my spine, wrist and ankle bones protruding from under my skin. When I came home from college I found unnatural amounts of hair coming out in my brush and I remember standing in front of the mirror in tears as I'd pull the hair out of my brush to throw it away. I remember my face, neck, arms, and back very frequently being broken out in lesions and rashes that would itch and hurt to the point where I had a constant relentless urge to pick at my skin whenever I felt nervous or panicky.
Naturally, the makeup, hairspray, and the need for "perfect" appearance quickly vanished. Suddenly my drive to stay alive became more important than my desire to look like society's ideal woman. Naturally, I felt horrible about myself day in and day out. I was useless. I had to stay in a bed and participate in laborious treatments that frequently made me feel worse. What could someone with Lyme disease ever have to offer in a world that pushes work, education, money, traveling, exercise, and looking amazing while doing it?
Eventually, as I learned to find comfort in my own face and my own skin, I learned the answer to that question. I had to come to a place of acceptance in my life. Acceptance of who I am no matter where I happen to be or what I happen to look like in my life. A place where I learned that the worth of a woman has nothing to do with how she looks. The worth of a woman doesn't equate to how smart or stupid society tells her that she is. The worth of a woman isn't about what men or other women think of her. The worth of a woman isn't drawn based off of her abilities or her disabilities. The worth of a woman isn't determined by how perfect she can get herself and her life to look.
I didn't realize when I was younger that my worth comes from my heart, not from my body. To say that one's worth comes from their physical appearance doesn't make sense simply because the heat of life being turned up doesn't equate to the worth of a soul being turned down. If my body determines my worth, then when my body breaks down from physical illness I don't have any worth! I know now that this perception of 'worth" just isn't true. I suppose it's true that "beauty is pain" not because of eyebrow plucking and long hours of makeup application, but because my illness does not make me "less beautiful." If anything it makes me more beautiful because of the extra strength and resilience that is accompanied with all the painful aspects of Lyme. I choose to not let Lyme define me, and even though it's incredilbly difficult... it doesn't determine who I am or my worth. Every single one of us is blessed with innate worth and ability when we are born, and that worth doesn't merely vanish when life gets hard, or when we feel inadequate in various aspects of our life.
In God's eyes, every single one of us has an undeniable amount of worth. When I can see that my worth comes from God, then I can also see that my worth is enduring and eternal. The glorious message from that is that every single one of us has the power to take our worth in our own hands and create something beautiful with it. I never was stupid. I never was ugly. I never was useless. I simply perceived myself to be that way which held me back and made it so I was living way beneath my privileges.
I've always been beautiful, smart, and capable. I've always had something to offer to the world. It is so with every woman if they so choose to discover and realize their internal worth. God loves His children. God loves His daughters. That doesn't change because of things that others say or expectations of society. My hope is that all women can come to an understanding of who they are and the innate beauty that is instilled in there own hearts and souls wherever they may be in their lives.
*This post was inspired by #thehellolovelyproject. You can learn more about the incredible woman who started this project by visiting her "About Me" page here.
Do you want to get involved with this project? Here's what you can do!
Throughout my life, I've had the privilege of sharing my story with lots of different minds and hearts that I've met along the way. Putting the intense battle of so many various kinds of pain into words that are relatable to the average person always seems to be an arduous task on my part, and I frequently seem to receive the same message from people that don't know me very well yet:
"Wow, Claire... That's really personal." or,
"I'm surprised you just shared all of that with me... that's really personal." or,
"Wow... you've been through a lot."
As expected, these comments are usually accompanied with wide eyes, dropped jaws, and a look of bewilderment. It wouldn't surprise me if at times people read my blogs and think similar thoughts.
Now, don't get me wrong... I have experienced very valuable conversations with people about my adversities as well, and this isn't to say that I don't appreciate the chances I do have for listening ears and open minds to hear me out and answer my cries for help with love and compassion. Those people know who they are, and they are very much loved and have forever left handprints on my heart.
But for this particular post, I want to articulate to my dear readers why I'm so very vocal about illness and tragedies, and why I feel such a deep desire to share my story, even if at times it may sound terribly personal, or be overwhelming to listen to or read.
I recently came across this quote on a Facebook page I follow that is dedicated to spreading awareness for Endometriosis (something that I've struggled with for years). This quote really hit home for me personally and is partially why I felt inspired to write this post. Which brings me to my first reason for refusing to stay silent in the midst of suffering:
1. It took me a really long time to develop a voice, and now I finally have it. I vividly remember in high school I obsessively agonized over what people thought of me. I was the "perfectly well behaved high school girl." I couldn't stand it if a single hair on my head was misplaced, or if a single drop of makeup was smeared or absent. I didn't have enough courage to say what I thought most of the time, and when I did say what I thought I was usually ridiculed or quickly shut down by my peers or teachers. This subconsciously lead me to believe that being fake and keeping my mouth shut was the best option in most cases. That, or subconsciously believing that I was incredibly unintelligent at least kept me in a social standpoint where I never had to step outside of the status-quo unless I was around a trusted friend where I could finally just be myself.
All of these false beliefs turned out to be incredibly damaging to me as I grew older and suffered greater tragedies than mere harsh judgments from my peers. I reached a point where I truly believed that I was stupid and worthless, and it's been a battle ever since to remember who I am and why I'm here. About a year ago, I suffered tremendous loss in my life, and when that happened, something inside me finally woke up. Ultimately, I'm tired of pretending. I'm tired of being afraid. I'm tired of thinking that what I have to say isn't worth hearing. I FINALLY found my voice. And now that I have it, I'm not going to be silent.
2. Deep connection and inspiration don't come from silence. Here's something to consider: Why would all of us be put on this earth TOGETHER, to experience pain and suffering, if we were never supposed to talk about our experiences? Adversity and hardship exist so that we can learn, grow, and be inspired, but we were not meant to do that alone. If we were, we wouldn't all be here TOGETHER.
Everybody has a story that can bring tears to the toughest of people, but cold hearts and false beliefs are born out of silence. If I choose to stay silent about my suffering, I'm depriving someone else of the strength that they may not know exists yet. If I'm too afraid to share my story, I'm sending a message of fear to a society that is already riddled with fear and anxiety for the future. In order to understand and truly appreciate the light in life, you have to experience and understand the darkness. That's non-negotiable, but thankfully God blesses us with other people to help us to understand the darkness so we don't have to experience every ounce of suffering by ourselves. And through our pain and suffering, we can learn to succor others... which is my next point.
3. We're not meant to suffer alone. When I think back to the times that I've been bedridden for months on end, I've tried multiple times to pinpoint the worst part of it all. And I have to be honest... The worst part of Lyme disease and Endometriosis isn't the long nights of seizures, puking, and indescribable lower abdominal pain. It's not endless exhaustion, joint pain, and muscle pain. It's not panic attacks, depression, and fits of Lyme rage. The hardest part of chronic illness... is the isolation. I've had so many nights where I've felt like I'm the only one in the world who is suffering on such an immense level. I've felt completely and utterly alone as I've come to realize that while I'm fighting a disease, everyone else's lives are continuing on without me.
Nobody deserves to suffer alone. Almost 50% of America suffers from one or more chronic illnesses, and while the other 50% are near oblivious to the excruciating suffering of us warriors of invisible illness, we're fighting for our lives. Everybody needs help. Every one needs support. Every person needs compassion. We were put on this earth to help each other. We're put on this earth to experience pure love, but I truly believe that we cannot do that without experiencing hardship and being willing to walk the more difficult roads in life. If my story can bring hope, peace, or strength to even just one person... it's worth it to me. It's worth the vulnerability. It's worth the chance that I could be shut down or ridiculed by some. It's worth opening up and being personal. We all need people we can relate to. Silence cuts us off from that connection that we all need in order to survive this life.
This is why I refuse to be silent anymore. This is why I speak up and speak out. This is why I believe that we all need to be a little more personal... because connecting hearts and promoting comfort and healing is so much more important than feeding our fear and protecting our pride.
It's been about a year since I've written in my blog, and as I recently skimmed through some of my old posts I found tears streaming down my face and I wondered how I could have left such an immense and deep-seated part of my soul in the past. My heart resides in this blog, and shame on me for burying such a special part of me in the dirt. I've changed and experienced so much this past year, and I hope to be able to share new messages of hope and peace to anyone who is struggling with any struggle, whether it be an outward struggle, like an illness, or an inward struggle, like feelings of inadequacy and fear of the future. I hope whoever comes across this can feel overflowing love from God, and hope for better things to come.
I desire to focus on healing. But I'm not one to sugarcoat experiences, or pretend like my healing journey was comfortable and effortless. I desire to share the good and the bad. The beautiful and the ugly. The tears and the laughter. The suffering and the blessings. The miracles. The hope. All of these things together make up my healing journey from chronic Lyme disease. And yet, I still find myself battling this dreadful disease. It's simply a different battle than it used to be.
Lyme disease is a monster. Perhaps one of the scariest monsters I've ever had to face. At times I feel as though I fight a grueling battle, only to wipe the blood off my sword and prepare for the next battle. It's been brutal. But it's been worth it.
My healing journey began with my angel mother. Despite her own extended battle with Lyme disease, while I was at my worst she spent all of her extra energy and time on discovering new ways to help me heal. And it was her who studied for days on end about the protocol I was to engage in. Everybody deserves to have someone like my mother in their lives. Someone who fights with you every step of the way and doesn't give up on you, even when the nights get long and the days get dark. It takes courage and endurance to be a caretaker, but the best of people do it because their love for the person who is suffering is stronger than any disability or illness could ever be. I'll forever be grateful to my mother for being that love that I needed. That love that helped me to find answers.
I woke up on my first day of treatment with a deep seated fear, but also a renewed hope. At the time I felt like I had reasons to fight. I was fighting for my future family. I was fighting for my Heavenly Father. I was fighting for all the people who suffer from Lyme disease and feel hopeless. I was fighting for my mother who has suffered twice as much and three times as long as I have.
My treatment was a seemingly simple detox therapy. The theory of the protocol consisted of killing the bacteria, bringing the bacteria to the surface of your body, and then sweating it out through your skin, which would then later be washed off in the shower. This happened in a step by step process that I completed every day for two months. My morning began with a protocol that would specifically target the Lyme bacteria, and kill as much of it as it could in one shot without killing me. I'd then orally take a specific dose of niacin and other supplements, followed by 30 minutes of exercise. The excersise would then induce what is referred to as a "niacin flush" which means that my entire body would light up bright red, bringing the bacteria in my body to the surface, which then puts my body in the perfect position to sweat out all the toxins. I would then spend the next hour and a half to two hours in a infrared sauna, at approximately 131° sweating, hurting, burning, and detoxing. The treatment was then completed with a quick shower, and spending the remainder of the day feeling weak, exhausted, and achy.
Ultimately, this treatment was a miracle in my life. But there's no denying that while I was suffering through it, I questioned whether or not it was worth it. I recall days where walking on the treadmill seemed impossible. I have memories of passing out and throwing up at random. I remember times when I felt as if I were enclosed in a box and experienced panic that comes from feeling like your air is being taken away from you. I remember the burn that came so fiercely across my skin. The kind of burn that feels as though there are tiny shards of glass embedded in every pore of my body. I recall the heartache and the tears, and the desperate waiting and watching the clock. The glorious mental relief that came when the timer would go off, signalling that treatment was done for the day.
We sometimes see healing and miracles as things that are easy and painless, but I can't say that's always the case. And if it were, we wouldn't ever have the divine chance to learn the crucial and vital things in life that we need to learn in order to overcome our greatest pains and suffering. Painful healing is sometimes necessary for the growth of one's soul. I was blessed with the glorious opportunity of a significant amount of healing from the plague that is Lyme disease. After two months I found myself with renewed energy. My pain slowly became less and less. My strength increased little by little. Even things like my face, hair, and skin seemed renewed and glowing towards the end of this era. It was nothing short of a miracle and I will forever be grateful for all the loving hearts and hands that supported me through such a crucial time in my life.
So to anyone who feels as though no matter how hard you try the more painful it seems, I encourage you to hold on. Because God may be healing you as we speak. Soul stretching moments of healing aren't supposed to be easy. But they're always nothing short of a miracle. There is always hope for healing. There is always light at the end of the tunnel. The day will come when we will all find healing from our seeming brokenness. The peace in the meantime comes from knowing that we're not alone, and that we have a loving God who's hand is divinely guiding us through it all. It's critical that we don't lose hope.
I've found that trauma and emotional anguish, over exertion, and a failure to continuously practice healthy living feeds Lyme bacteria. I've found that my greatest desire is to be made COMPLETELY whole, but I've also learned that that may never be a reality in this life. Despite all that, despite feeling like I've been pushed a little backwards, and despite that life is hard sometimes, I have a renewed outlook on life. I have a new perspective that helps me to see the beauty, the healing, and the mercy in life. My prayer is that we can all find that in life, even if at times that entails pain and discomfort.
A couple of years ago I found myself at the bottom of a gorge, lacking safety ropes, climbing gear, or harnesses of any kind. I sat with my back up against the steep cliff that was before me, and with a loss of breath and words I struggled for a desire to want to look up at the daunting task before me. That steep, unforgiving cliff was my only way out, I knew it and I didn’t want to except it.
I’m not sure how I got there. I’m not sure if I merely tripped and fell over the edge due to an exorbitant amount of overwhelming life circumstances, or if some insensitive person had simply caught me off guard from behind, and gave me a swift push. All I knew was that I was sore, exhausted, and I felt as though the walls were closing in around me. The hot sun beat against my skin as if it were mocking my very existence, and the hard ground lead me to realize that staying in one place wasn’t giving me any easier of an answer.
I managed to pull myself to my feet, and brush off my shorts and t-shirt that were coated in a layer of dirt and dust. I posed my hand to my forehead in attempts to shield my eyes from the sun, only to find a large, bloody gash in my forehead that made me now understand why my brain felt like it was pulsing beneath my skull.
I looked up in the direction I knew I needed to go. It seemed like miles of hard rock, scraped hands, and fairytale destinations. I could see my parents scaling that same cliff miles above me. They had begun this journey long before I had, and to be frank I didn’t know how they were still managing to pull themselves upward. It seemed like the impossible task, and I questioned whether the end goal was really worth it or not.
I resolved to begin my climb. I walked up to the menacing rock wall, placed my palm in a small indent in the side of the cliff, and dug my fingers around it in an attempt to obtain a sturdy grip. I placed my foot in a sufficient gap for a foothold, and pulled myself upwards. So far so good. I continued this pattern for a couple of arm-lengths worth of rock wall before my fingers slipped off my indent, I lost my footing, and fell mercilessly back down to where I started. My skin felt like it had been torn off around my palms, arm, and knees, and my head throbbed even harder in defeat.
Keep in mind that I’m not the type of person to quit while I’m ahead. So of course I got right back up and tried again. Grip, footing, pull! Grip, footing, pull! I never quite got the hang of it well enough to reach a certain destination without tumbling a few inches downward, but after a lot of sweat and perseverance I managed to pull myself up by my parents who welcomed me as we began the rest of the journey together.
Throughout my journey, I had a lot of interesting experiences. I ran into a lot of loose rocks, and unforgiving tree branches. Avalanches and rock slides. Tears and feelings of hopelessness. And of course wishes that I wouldn’t have to do this anymore. Just when I thought I was almost there some kind of obstacle left me scraping my skin down a few inches of the cliff. I also discovered various tips and tricks from my dear parents and the reasons why they were still holding on for dear life. Those lessons I learned helped me to keep going, and helped me to realize that now was not the time to surrender to that demeaning wall of rock.
Now, on this very day, I’m still gripping the side of that cliff. I’m so close to the top where I will find my way out of this horrible place. But I still have quite the climb, and throughout my journey I have discovered my will to live, the people I love the most, and the power that keeps me pulling myself upward.
Of course, I haven’t been scaling a million mile cliff for the past two years of my life!
What I have been doing is fighting a horrible disease that is highly analogous to that of scaling a cliff that seems to be miles high, and undefeatable.
My life’s mountain is Chronic Lyme Disease, and I intend to someday reach the top.
My lack of climbing equipment is comparable to my lack of doctors, health care, and treatment options for Lyme disease. No medical professional seemed to have the answer for me. No medications, no pain pills, no belief in the medical industry that Lyme disease even exists! My Lyme equipment merely didn't exist in the beginning.
That gash on my forehead and sun beating down on me is equivalent to all the headaches, joint pain, nausea, vomiting, seizures, excruciating abdominal pain, vertigo, fatigue, limited energy, and so many symptoms that began the long spiraling journey that assisted in my arrival in that gorge in the first place.
Those trees, rocks, avalanches, and rock slides that kept slipping and slapping me down, limiting my upward progress, are comparable to all the people that have told me that I’m crazy. All the people that tell me that I’m doing this or that wrong, or all the people that don’t believe that I actually have any problem at all, and all the people that continually push me down and hurt me more when all I’m trying to do is my best.
The journey up the side of the cliff that my parents made before me is something that I will always be grateful for. It is my mother that found safety equipment along the way. It is my mother and father that grabbed me by the hand, and pulled with all their might and found answers to help me through my difficult journey. It is my mother that gave me hope in the most difficult of times, and has lead me in my healing journey.
The higher I climb on my mountain, the closer I come to healing, and now I’m almost there.
It was around December of 2016 that I began to realize my swift turn around. I realized that I was hundreds of miles from where I started, and I was beginning to see the glorious blessings that God was blessing me with all along the way! I discovered love and healing, peace and comfort, hope for my future that I didn’t think I had. I’m beginning to see the light at the end of the tunnel, I just have to keep climbing.
This is what chronic Lyme disease feels like. It’s like scaling a million mile high cliff with no safety gear. It’s like falling over, and over, and OVER again and hoping that eventually you’ll reach the top!
Lyme disease is a rough journey. I’m EXHAUSTED! There are days that I don’t want to keep climbing. There are days that it would be easier to quit, but I just can’t. It’s interesting how you begin to discover love and healing, and you begin to see your future incredibly clear, and your will to live comes back. Healing always leaves a lot of room for hope.
A wise man once said, “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. (Jeffery R. Holland, 1999)”
I believe that now. There is always light at the top of your climb. God does not leave us to suffer alone. God does not leave us without answers. God is always with us to offer us help and happiness ahead. That alone is enough to make me want to keep going.
So whatever you do… Don’t you quit. You keep walking. There is ALWAYS help and happiness ahead.
I remember participating as teenager in various Sunday school classes, youth groups, and general life courses in high school where the teacher inquired the following question: "Where will you be in five years?" or "Where will you be in ten years?"
I remember having a thorough, well thought out image in my head of what my life would look like in five or ten years. I planned to marry straight out of high school at age eighteen. I thought to myself: "I'm a socially apt, talented, smart, beautiful girl! I'll snatch a man no problem!" I always planned that I would never date anyone who treated me less than a queen, and I'd fall in love in a "whirlwind romance", just like in the romance movies. I'd earnestly mapped out my life. I'd attend college as a music major, while my husband attended for some other high end profession. I'd live in a modest home with perfectly trimmed lawn and flawless flower beds.
By the time I reached age thirty I'd be a successful business woman with her own vocal studio, and six children. My family would be the type that wears matching pajamas, and holds hands all in a row at the store. We'd wake up at 7 every morning, never a moment later! My house and children would always be clean my husband would always come home on time. He'd greet me with a kiss, and I'd always be dressed flawlessly with my hair and makeup precisely in place. My children would never complain or make bad choices and they'd all grow up to be successful, well rounded adults.
As a teenager, my vision for life didn't include imperfection and flaws. It wasn't comprised of unexpected pitfalls and adversity. It didn't encompass imperfection. It didn't encompass Lyme Disease. Lyme disease wasn't part of the plan.
When I was 18, I wanted a husband, but instead I got a diagnosis.
I graduated high school as planned. I had two scholarships to the school I would study music at. I had a boyfriend, and a circle of friends that I was content with. I was ready to set sail into my "perfect" life. Little did I know that life is what happens AFTER you make plans.
I'll never forget the night I received that phone call. I was sitting in my small room in my apartment and my mom called to inform me that she had received the test results for the thirty vials of blood I had drawn a week prior to leaving for college. The reality is that I already knew the answer to those tests. I was struggling beyond belief at that point. My fatigue was impossible to fight. My muscle and joint pain made it hard to move from class to class. The daily panic attacks that took place were debilitating, and my endometriosis symptoms left me all alone, in tears, struggling through fits of pain. I lost a lot of weight, and I just kept shedding pounds as the time went by.
Time passed. More tests results came back positive for Lyme Disease. In multiple moments of self reflection I thought: "I already struggled to watch my mom suffer from Lyme. So why me? Why now? What about my dreams? What about my 'perfect' life?"
I came home from college three months into it. I felt defeated. I felt exhausted. I felt depressed. I felt sore and achy. I felt ugly. I felt lonely. I felt unlovable. I felt like a failure. I was in tremendous amounts of pain, and I couldn't help but feel like it was my fault. I couldn't help but feel like my dreams had been burned right before my eyes. I couldn't help but feel like my vision for my life was NEVER EVER going to happen. Thoughts recklessly spun in my head on a constant basis: "What man would want a sick girl? I probably can't even have children. I'm worthless."
I spent a great deal of time in bed or asleep on the sofa. I stopped doing the things I loved. I stopped being the person I am. Through the pain and survival tactics I used, I forgot about myself. I left my identity in the distant past that I never thought I'd ever retrieve. I suffered excruciating pain flares that left me vomiting, seizing, and screaming desperately for relief. Pain medication didn't help. For a long time I felt hopelessly aware that nothing I seemed to be doing was working. The panic in my inner being was inevitable. I lost my motivation for life. I found myself in unhealthy relationships because I desperately wanted someone to love me. There were times that I couldn't walk by myself or stand up in the shower long enough. There were times I couldn't wash or blow dry my own hair, and there were times I resolved to lay in bed and hopefully die there.
At one point the day came that I found myself in a place so dark, I found that I wasn't even the same person anymore, and the person that I was I didn't like at all. Laying around feeling sorry for myself wasn't working anymore. Complaining about having to take 20+ supplements a day, and other forms of treatment wasn't working anymore. Negative relationships and my negative attitude wasn't working anymore.
Don't get me wrong. We all must face a mourning period of our diagnoses. In no way does recognizing and fighting the negative forces around me invalidate my pain, or mean that I'm not in pain. I've suffered tremendously. I still do on some days. But since that dark time, I've had to change the way I think.
I got down on my knees one day and prayed with all my heart that God would help me out of this dark place. I began studying my scriptures and striving for understanding of why I'm really suffering so much. I began to develop a habit of those two things, and in the process I began to discover myself again. Not just the me that was in my distant past, but a whole new me that just needed to find enough light to bloom where I was planted.
I have fought a good fight, and I'm still fighting. I'm a changed person, and there's still more to learn, and more in life to go through. Lyme disease doesn't have to be restraining to the point where you can't breathe. Lyme disease makes everything in life a little more difficult. In spite of that, I've found that if I look for the light and enjoy the Olympic moments that God blesses me with, it makes the fight a lot lighter and a lot more beautiful.
What I told myself back then about being worthless, ugly, unlovable, and broken were all lies. Lies that tore at me for the longest time. But what I told myself when I was a teenager about having a "perfect" life someday without flaw or hardship was also a lie. In a way, Lyme disease "ruined" my "perfect" life. And I'm incredibly grateful that it did.
I'm twenty, I'm not married, and most days I wake up way past the time I plan to. I'm going to school to become a nutritionist instead of a voice teacher. I spend a large amount of my day taking supplements and undergoing difficult treatments. A large amount of the time I don't wear makeup, and my outfits are less than flawless. I'm still in pain a lot and my energy levels aren't as high as the average person. I've discovered that falling in a true and pure form of love doesn't happen in a whirlwind, but in a slow progression that grows a little bit everyday. I've learned that sometimes life is clumsy, awkward, and uncomfortable. I've developed a skill at catching the curve balls that life continues to throw at me. That's life! And I'm grateful. I've learned that what I thought I wanted isn't exactly what I really wanted.
My perspective on life has changed a lot in past year. You don't get married because it's easy. You don't have children because it's easy. You don't fight daily battles and search for light on a constant basis because it's easy. Life isn't supposed to be easy! The idea that I do things because they're easy and will make my life "perfect" and "flawless" is ridiculous, and lacks eternal perspective.
God has blessed me with the strength and courage I need to keep pushing through, and to discover a better life for myself. He has blessed me with ability and intelligence to find ways to heal. He has blessed me with life long best friends who love and teach me and understandingly and patiently suffer with me. He has blessed me with talents, skills, and knowledge that I continue to develop. He blesses me everyday with beautiful moments that I will always cherish, because even though I'm sick, I still am blessed enough to have those moments! He has blessed me beyond words.
Lyme disease "ruined" my "perfect" life. But thankfully, Lyme gave me a beautiful, crazy, imperfect, painful, magnificent, glorious life! Life doesn't have to be perfect to be beautiful. In fact, life is beautiful because it's imperfect and because we have the opportunity to learn and progress in ways that allow us to understand our full potential. I plan to cherish the perfect moments. Laugh at the imperfect moments. Cry through the painful moments. And smile through all of the in between moments!
I haven't let go of my dreams for my future. But my dreams for the future have shifted and changed. I have Lyme disease! So what? God has plans for me, and Lyme disease isn't going to stop me from that beautifully imperfect life that He has in store for me. It won't always be easy, but in the eternal perspective of it all, it'll be worth it. Lyme disease may have "ruined" my "perfect" life, but it also helped me to build a beautiful life.
“Claire has courage.” My heart beat incredulously hard as those words rolled of the tongue of a teacher of mine one night prior to my high school graduation. I was attending my Senior dinner dedicated to the graduating class of 2015. Each student received praise from a specific teacher, and for me I never thought that specific teacher would say that. I had been a lot of things throughout my high school career. I never considered courage being one of them. I had been hard working and diligent. Headstrong and stubborn. Exhausted and discouraged. And a lot of other things at that time in my life… but courageous? I wasn’t so sure. Since then, those three words have echoed through my mind and heart multiple times throughout my existence as a silent sufferer. “Claire has courage.”
What exactly is courage? Some bold feat that none other would be crazy enough to attempt? Daring to be different? Daring to stand strong in your convictions and your thirst for knowledge and truth? Following your dreams and having success in high finances and authority? Maybe. These things all seem courageous enough, but I think I’ve gained a new definition of courage in the past year of my life.
Three months after graduation I stood in my apartment the first day being dropped off at college. I was alone, and I was terrified. I felt that at that single moment in time all my courage (if I even had any) had been tangibly torn from my inner being. What happened to the girl who supposedly had courage?
My courage seemed to continually plummet as I suffered each painful flare, and each life failure. Failing college, coming home from college, being sick 24/7. Everything just seemed to make me weak and useless. Eventually when your body lays in bed like a shriveled mess for such a long time, you decide to choose courage. Courage to get out of bed. Courage to try new things. Courage to develop new skills and abilities. Courage to study so hard that you know more about your disease than doctors do. Courage to grow closer to your loved ones. Courage to have compassion like you’ve never had before. Courage to enjoy the good moments, even if those moments are small and insignificant. And courage to submit to my Heavenly Father’s will, even if it’s the hardest thing I’ve ever done.
I don’t know if I had courage at that moment in time when my teacher declared me as “Claire the courageous,” but I have discovered that as I strive every day to have a little more courage, faith, and hope, I start to have a clearer understanding of what those things are, and how they all go hand in hand. I may have courage now, but not because of anything I have done. For without God, I am nothing, and it is because of Him that I have become the person I am, and I have the courage that I do. Not only that, but I still have so much to be taught by the Lord, and so much more to learn. This week I wanted to strive to be more courageous, and despite feeling sluggish, exhausted, and sick, I can tangibly feel the Lord’s hand in my life, and it is Him that gives me courage to keep going. What a blessing that is!
So my message to you this day: Don’t quit. Keep fighting. Be courageous in the way that the Lord would have you be. It is the Lord that provides me with my courage on a daily basis, just like he can provide you with. Sometimes you just have to open your eyes wide enough to see it. Not only that, but seeing isn’t just about seeing with your eyes, it’s about seeing with your heart and once you understand that, you'll develop courage beyond your wildest dreams! It is not always the big worldly things that indicate courage, sometimes it the small and simple things that bless lives and give hope to others. Continue forth in courage and God will bless you to continue on with faith and hope for the future.
We've all seen those movies. Those feel good movies that inevitably end in "happily ever after." The story line being generally the same for every new movie. Guy meets girl during some romantic season of the year (which can basically be any time), guy and girl never see the inevitable in the beginning, but always end up falling madly in love in the end. Or perhaps they're childhood sweethearts that are completely blind to the romance "blooming" between them. Or maybe it's a simple story of Santa sending a "boyfriend for Christmas." (How convenient would that be?!) In the end the plot is generally interchangeable with any other Hallmark movie under the sun. It always ends in remarkable love for family, success in life, and the one and only "true love's kiss."
I personally grew up on these movies and for some reason, in the mind of a young teenage girl, I always thought that my life would eventually end similar to these fictional character’s lives. Ever since I can remember my goal in life was to find true love, settle down, have a family, and live “happily ever after.” There comes a time in life where you have to be realistic. All too quickly my “remarkable love for family” turned into a disease that seemed to rip me from my family ties. My “success in life” developed into immense effort to get well so I can live a “normal” life. And my “true love's kiss” shifted to 20+ pill intake, three times a day, in order to control pain, symptoms, and bacteria levels. So much for my “happily ever after.”
People have always stated the mantra, “When life gives you lemons, make lemonade!” I suppose you could look at life that way, but the realistic view of things has to take into account that if life doesn’t give you sugar and water as well, your lemonade is going to taste awful. To make matters worse, if you're lucky enough for life to give you sugar, chances are that the sugar will probably give you Cancer, or Lyme disease, or some other terminal illness.
I suppose you could call me a pessimist, but that's not exactly my point. It’s not really a matter of pessimism or optimism. It’s a matter of ignoring the lemons that life throws at you, and trying to see the blessings and opportunities that have come from hardships. I can be as positive as any well known optimist if I wanted to be, but that doesn’t change the fact that I suffer from chronic pain, I’m discouraged from life, I’ve been abandoned by people because of my illness, I’m lonely, and I’m exhausted! When you’re suffering tremendously it’s okay to be real! You don’t have to sugarcoat things for other’s convenience and comfort. My life didn’t turn out like the Hallmark movie I hoped for, but that doesn’t mean it can’t be an incredible story.
Sometimes life doesn’t become the story you hoped for, but it’s not so much the circumstances you’re in that determine success, happiness, or worth. Sometimes the happiest people are the people that simply choose to be happy. Don’t wait for the “true loves kiss.” Don’t stand idly by waiting for life success. I can’t waste my time waiting for Prince Charming when I have things I need to do in the meantime.
I believe that the secret is to look for everyday miracles. In Hallmark movies the miracles are obvious. The miraculous business decision that saves the company. The rain fall that saves a year’s worth of crops. True love coming together against all odds. Sometimes life’s miracles are not as obvious to the human eye. In reality, the secret is to see with your heart. The miracles that take place in my life are my own source of “Hallmark” moments. Those moments are a gift from God, and with such a miserable disease that seems to steal my life at times, it’s so vital that my heart be opened to every beautiful mercy that God blesses me with.
I know in the depths of my heart and soul that no matter what we go through in life, we can find pure joy in the moments. My life didn’t turn out to be the “Hallmark” story that I had hoped for, but it turned out to be so much more. I have been blessed with a certain depth to life that is only found through suffering and difficult life lessons. I have had moments that are so incredible at times they have brought me to tears. The older you get the easier it is to be brought to tears because you know the darkest and scariest corners of life, and with that comes the blessing of knowing how the Lord blesses us in so many aspects. All we have to do is open our eyes and hearts to His will, and what glorious blessings will come of such simple obedience!
I hope we all have those “Hallmark” moments that add a bit of spark to life. Granted if life is only handing you lemons at times, try and find the sweet spots that are hidden among the sour moments. I promise it will be worth your while.
When I was a little girl, I used to play card and board games with my dad every night before bed. It wasn't anything big our extravagant, but it was just something we did. Something that kept us connected as daddy daughter. I'll never forget those innocent years of my life. The laughs and memories I had with my dad back then are something that I will always keep close to my heart.
As I grew and entered into my teen years things changed, and I grew apart from my dad. I grew up and all of a sudden I wasn't that little girl anymore. With time, I learned that there was so much more to my father's character than simply fun and games.
My Mom's health problems took a turn for the worse my Junior year of high school. She was in excruciating amounts of pain the majority of the time. She lost her ability to walk, and at times could barely communicate with us. Her screams of agony still burn deep into my memory. Her seizures, moaning, and endless supply of sleepless nights weighed on her increasingly every day. I watched my mother almost die on multiple occasions, and I can guarantee you that almost losing my mother was one of the scariest things I have ever witnessed in my entire life.
Despite the impossible amount of endurance it took to watch, support, and never give up, my father NEVER quit on my mother. He never complained. He never thought of himself. He never even thought for a second that leaving was an option. He stayed by her side, he held her hand, he administered peace, reassurance, and eternal love. A love so incredibly and beautifully deep that a young person such as myself can't even grasp it. He never quit. He never left. He never stopped fighting for her every single horrible day that took place at that point in our lives. He gave her a reason to keep living. Lyme disease tried to steal my parents love for each other, but my parents would never let that happen.
When I got diagnosed with Lyme disease not too many years later, it was like finding out you were stuck in an eternal nightmare that wouldn't end no matter how hard you begged it to. There were nights I couldn't walk by myself and my dad worked as that extra support that I needed to place one foot in front of the other. When I fell, he would run to me and help my back to bed. When I was in too much pain to do anything else but scream, he would let me squeeze his hand and scream. He's never stopped praying for me and my mom. All the while, he has the same disease that we have. My dad suffers in silence, but his actions speak volumes.
My dad has taught me over the years how precious it is to be a daughter of God. He taught me how a man should treat his wife and his family. He taught me to love God over everything else, even when things are hard. My dad has helped me and taught me in every way that a father could hope to teach his children. And most importantly, my dad has loved me no matter how stubborn and unreasonable I can be.
My dad is a hero. He takes the definition of "father" to a whole new level. Through it all, my dad has been my father, my friend, my caretaker, my healer, my shoulder to cry on, my words of wisdom, my reminder that God hasn't forgotten us, and my hope that one day I will marry someone like him.
So to my dad:
I love you more than words can say. You are one man in my life who has never EVER let me down, and you continue to be that every day. I'm sorry for all of the times we've butted heads. But through it all, I hope you know that I couldn't ask for a better father than you.
Dad, thanks for all the pictures you've hung, meals you've made, furniture you've moved, and spiders you've killed. Thanks for helping me laugh when I needed it, and cry on your shoulder because I need that too. Thanks for reminding me that I'm beautiful even though I have a disease. Thanks for teaching me everything I've needed to know for life ahead, and thanks for continuously being that teacher. Thanks for helping me heal. Thanks for being my caretaker. Thanks for EVERYTHING you do.
I love you Dad!
Your Loving Daughter
My whole life I've been different. I suppose we're all different in our own unique way, but for me, my unique outlook on life was so obvious that my peers and acquaintances never hesitated to declare to me the obscure differences between me and the rest of the world. I've always thought I was “weird.” In reality, who isn’t weird? As I've grown into the woman that I am, I've come to realize that at times we are too worried about being "weird" when we should be embracing our unique quality of character.
In high school, I was different because I was "too skinny" because I walked like a "runway model" or because I was "too pretty and that was the only thing I had going for me." I was ridiculed because I was "really awkward." For some reason I always managed to be awfully clumsy. I tripped over everything. I laughed "too much" and I talked "too loud." I got "overly excited" about my passions. I adored the color pink. I sang my way through life's troubles. I wrote everything down that inspired me. I gained a love for God and all of His principles and the way He lovingly guided me through my life. I was my own version of me, and I was harshly ridiculed for that. But I loved me, and I wouldn't want to change for anyone.
Eventually I went onto college. The harsh words of my peers faded with my past, but the words of peers past cut deep into my heart as symptoms and anxieties increased throughout my college experience. Then I got diagnosed. I got sick, and I wasn’t getting better anytime soon. I never thought that one day I would wake up as somebody else. But I did, and it was terrifying. That's when all those words started to cut hard. I had lost the person I once was. I lost the person that people disapproved of because it was “too weird.” I became a different person, but I wasn’t happy with it, and I didn’t want to let go of who I once was.
I increasingly lost weight when I was already too small for my size. My “runway model” walk turned into an exhausted limp. My face became pale and ghostly, my skin broke out in horrible rashes, and my hair thinned out increasingly more every day. My "pretty face" that “was the only thing I had going for me” slowly disappeared as I observed myself in the mirror every day.
My clumsiness and awkward character only increased as my cognitive dysfunction and loss of coordination grew. I spent more time crying, and less time laughing. My loud mouth become quiet and unheard. I stopped the excitement that pierced through my veins whenever I wore the color pink, or mentioned something about the beauty of writing. I stopped singing. I stopped my fervent prayers. I stopped loving and the pain overcame me. The reality of my younger years, was that I was ridiculed for being unique, so when those speculations finally hit me in the form of a disease, I stopped my unique frame of mind and sunk into the average sense of character and the "daily grind" form of life.
Today I’m not the same person I was in high school, or who I was when I first became diagnosed. In some ways, I feel similar to a butterfly newly emerged from its cocoon. Some days, it’s too hard to fly because my wings are too new and fresh, but other days I feel as though I could soar for miles on my new wings that make up my character.
Am I still unique and have I carried some of my old self with me into my new self? I would wholeheartedly say yes. Over time, I’ve developed fears, hopes, dreams, and a love for people and for God that I never before would have imagined. I’ve developed understanding of things that I thought I already understood, but I didn’t. I changed, and I still continue to every day. I still adore the color pink. I’ve gained a new excitement for life and my passions. I started to laugh my way through life again, and my loud personality blossomed into something that I appreciate. I’ve developed talents and abilities I didn’t know I had. I’ve gained wisdom and knowledge that I can only hope to further as I continue through this trial of chronic illness. I flew like a butterfly, even though at first I was flapping like a crow.
Most importantly, I gained a love for my Savior and my God that I never before thought possible. I gained a love for the little things in life, and I gained a faith that is only possible through the power of God and His love for us. I gained understanding of why I had to go through this, and why I must continue to learn. I gained so much from the power of God that my words fail to describe the paradigm shift that I have experienced in the past year of my life. I’ve gained a greater knowledge of self-worth, and the worth given to me by my Heavenly Father who sees my worth as something far greater than the worth of rubies.
I’ve changed so much, one post would not be able to sufficiently describe it. My message to whoever is reading this would be that God puts things in our lives to either bless us, or teach us. God wants you to be unique. My illness makes me incredibly different, and I've learned to appreciate that. Embrace your unique self, and learn to love and see yourself the way that God does. No matter what you are going through, and how close you are to giving up. Don’t. Don’t listen to the desecrating words of the world around you. Listen to the loving words of your Heavenly Father. He will always show you your pathway. And He will always give you comfort. I wish the best for all of you and whatever it is that you may be suffering through. Don’t give up yet. You are not “weird.” You are unique and incredible in the eyes of God. Never forget that, as God never forgets you.