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.
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 feel as though I'm walking on a tightrope with me on one end, and all of my possible dreams for the future on the other. As I carefully force my aching and trembling body to take one careful step at a time, there's this constant fear that nags at the back of my neck that someone, at any given moment, is going to walk up behind me and push me just enough to send me plummeting to the deepest depths of despair. Thankfully that hasn't happen yet. I'm still carefully placing one foot of my broken body in front of the other, and with that I slowly get one step closer to fulfilling my dreams, even if they are miles and miles away.
My entire life all I've wanted to be is a wife and mother. Ever since I was old enough to know what marriage was, I knew that was where I wanted to be "when I grew up." I envisioned my future husband, my future children, and my future home centered on God, love for Him, and love for each other. As I grew up I would make lists of things I would and wouldn't do as a mother, and lists of what my husband would be like. I would look at picture of homes and decide what I wanted mine to be like. I watched my mother raise all of my siblings, and me, and I took careful note of the loving and beautiful way she treated us, and her husband. I took careful watch of my dad, and how he treated my mother, and I took mental note of how I wanted my future husband to be "just like that." My vision was clear, and every decision I've ever made in my life has been conducive to that dream. That's all I've ever wanted. I believe that the amount of money you make does not determine success. My belief has always been that success is discovered through family, and the love and fulfillment that comes from having one.
The day I got diagnosed with Lyme Disease, was the day that all of dreams went flying out the window and off into a distant existence where I could no longer reach them. It was the day where I began my endless basket of questions for the future, and since then it's only gotten bigger and bigger. I don't know if my dreams are reachable at this point. And it scares me to think that I'll never be able to be the woman that an amazing man gets to come home to everyday. It scares me to think that I'll never have those babies that I'd get to raise and love. It scares me to think that my home centered on God, will never be.
I have other dreams too. I've always wanted to open a vocal studio. and give to children the incredible miracle of music that my first voice teacher gave to me. I've always wanted to write a novel. One that inspires and uplifts the human soul. I've always wanted to take my voice, and perform with the objective to uplift and inspire peoples lives. I've always wanted to learn how to cook. I've always wanted to become a teacher. I've always wanted to be the perfect homemaker and continuously develop skills that would make it so I could do that. I've always wanted to be someone. I've always wanted to help people.
But how will I ever reach such a far away destination when I'm stuck at home in bed, suffering so bad that I don't even know if I'll make it out alive?
I don't know the complete answer to that, but I'd like to try and answer it anyway.
.Chronic illness is something that you take one minute at a time. Not one day, one week, one month, or even one hour, but one minute. In fact, there are some days that I feel as though I'm taking it one second at a time. And with each precious pain, anxiety, and stress free second, I count that second as a blessing given to me from my loving Heavenly Father. Every piece of strength I manage to muster at any moment I consider a gift from God. I can not do this alone, and I'm grateful that God is always with me.
In every battle, there is always a secret weapon. My secret weapon in this battle is faith. Faith keeps me fighting, and faith keeps my hope for the future. I keep telling myself every moment of the day that I have to keep my faith. Faith that I'm going to get better. Faith that I can fight this and come out stronger. Faith that God is always with me. Faith that God can heal me. Or even faith that I won't be healed, but that I'll find a way to live happily, despite my broken down body, mind, heart, and soul. Without my faith, I am nothing, and my hope that I am so desperately trying to obtain slowly vanishes into thin air.
Some days I have faith that I'll get better, and other days I feel hopeless and despairingly distraught. I look at it this way. Every day I try to do at least one thing that brings me joy. Even if it's microscopically small. If I successfully accomplish one small thing, then I'm not finished yet. Lyme hasn't won yet, and I don't intend on letting it. This trial in my life is incredibly hard, but I want to stay strong. I want to fight this battle, and I want to win. I'm exhausted in every sense of the word, but I can't give up. I just can't.
I'm so grateful to my Savior for giving me the strength I need to continuously fight this. I'm so grateful for the support that comes from my family and others that I hold close to my heart. This is a lonely battle, but knowing that I'm never completely alone is extremely comforting. I'm not giving up yet, and even though the tears streaming down my face scream fear, anxiety, and hopelessness for my future, my faith says otherwise. I intend on keeping my faith in the present in order to dispel my fear for the future. I'll still have my home, my husband, and my children. It just my be a little different vision that I had before. The important thing is that the vision I had of endless amounts of love that takes place in my future will not change, Lyme or no Lyme. In times of fear, my faith will always come out conqueror.
I lay on the couch on Monday afternoon with a good book and a cup of herbal tea. My body felt heavy under my own weight and my head felt similar to a bag of bricks. My eyes felt heavy and my hands shook from all the pressure in my joints. I've had the opportunity throughout my life to get particularly comfortable with the constant companion of nausea, brain fog, cognitive dysfunction, weakness of limbs, and tremors. I've had those for so long it's almost like they're a part of me. But this pain was different. This pain was heavy and exhausting. I almost felt like I was getting a bad case of the flu. At the time, I had no idea what I was in for.
Night came and by then I was paralyzed with pain. Sleeping was impossible. Every time I would lay on one side for too long, it would start to hurt and I would have to roll over to my other side which caused a whole new strew of pain. The bricks in my head turned into a sledge hammer gouging into my skull. The heaviness of my muscles morphed into throbbing pain that bit at every muscle is my body. My spine felt like it was being wrung like an old rag, and my hips felt like someone was trying to detach them from my waist. My legs felt like the muscles were being pounded with a mallet and my feet felt like they didn't even belong to me anymore. Everything was constantly spinning. Everything was throbbing. Everything hurt. I have never been in such terrible pain in my entire life. I've felt lots of pain before, but this was pure horror.
The majority of this lasted for three days. Three days straight of intense pain. One night in attempts to get up and out of bed by myself, I passed out. I hit my head, and bruised my hip on my hard kitchen floor. All I remember is opening my eyes and wondering why I wasn't laying in my bed. I then recalled everything and knew exactly why I wasn't in bed. I wanted to scream. I wanted to cry for help. I wanted to punch something. I had every emotion at once while simultaneously feeling nothing at all. All I can say is I would never wish that pain upon anybody. EVER.
Well I'm happy to say I made it out alive. My pain subsided for the most part and I'm not dead yet. I'm still sore and recovering. I feel like I've been badly beaten up and am barely crawling away from it, but I'm one herx closer to being completely healed from this awful illness and that alone gives me hope. Thank goodness for hope. I will never let go of my hope, for it is my source of peace through this hard and discouraging time.
After this past week, I've gained a new appreciation for my life, for my body, and for the amazing people in my life. I wake up in the mornings now and feel like I'm 80 years old. My body is just sore and my heart and soul are exhausted. But after all of that pain, I'm so grateful. I'm grateful for the ability to walk all by myself, and I'm grateful to be able open my eyes without them hurting. I'm grateful that I can use my hands without joint pain, and I'm grateful that even though my body doesn't feel like it functions properly, it's still functioning. It's still working. It's not giving up. I'm not giving up.
I'm so grateful for all the people around me that love and support me. I feel incredibly blessed to have certain people that I love so much be a part of my life right now. I could not do this without them. Most of all I'm grateful for my amazing parents who never left my side, who stayed up with me all those nights, who provided me with comfort, and who peeled my half dead carcass off the floor after I passed out and brought me back to bed. Thank goodness for my amazing, patient, kindhearted, and loving parents. I can not walk this journey alone. Thank goodness that God has provided me with the amazing people I need to help me through it.
I'm incredibly grateful for one more thing, a huge blessing in my life. I'm truly grateful for my Savior, Jesus Christ. Without Him I would not have gotten through all that pain and suffering. I would be done. There were times when I wanted to be done, but through the Savior's healing power I somehow managed to pull through. Thank goodness for that. I love my God, and my Savior with all my heart. The tender mercies of the Lord that are given to me on a daily basis are truly what get me through life right now, and I am incredibly grateful.
I've shed a lot of tears this week, but I truly believe that tears are a beautiful form of expression. My tears are not a sign of weakness or failure, but an expression of strength and steadfastness. I'm not a quitter, and I'm not giving up yet. I'm a warrior, and I intend on beating this thing no matter how hard I have to fight. So to all the warriors out there, here's a piece of hope. It's not over yet. Keep fighting. It's always rough on the battlefield, but when you come out victorious, you'll remember how hard you fought, and it'll all be worth it.
One thing I truly love about writing is that I get to be completely real. We all have struggles and trials in our lives, and yet we cease to talk about them. We paste on a fake smile and play the tough guy while inside we're falling apart. Well my writing is my safe zone to be real. No fake smiles, no masks, no reminiscence of a barbie doll, and no sugar coating. Just me and my inner most thoughts and feelings; imperfections and all. Sometimes coping isn't possible if you can't get your thoughts and feelings straight, and I suppose that this is my way of saying "Hey, I'm real. I'm a human being. No, I don't look perfect right now. Yes I'm in pain right now. And yes, I did just spend my entire day in bed because of my chronic illness and there is absolutely nothing wrong with that."
With that said, I'm going to be completely real with you now. The holidays are not easy. They never have been. Don't get me wrong. I love Christmas, and I acknowledge the most important parts of the holidays. But even then, there are some days that I'm in too much emotional and physical pain to care about the holiday season at all. Two Christmases ago, my mother was so sick that she could barely get out of bed to spend Christmas morning with us. Since then it feels like the domino effect has taken place in my home and family life. Just one thing after another. What do I have to be thankful for when I don't even really have the strength or motivation to get out of bed on some mornings? How do I put the happy into the holidays when knives are stabbing me in the stomach and my legs feel like they're going to give out at any moment? Where's the merry in Christmas when I'd rather do anything but lie in pain, but my chronic fatigue rather have me lay in bed. I was doing so much better for a couple of weeks, and then it's almost as if my Lyme got bored and decided to torture me for its own sick joy.
A few nights ago I lay on my floor, wincing in pain, and praying for some relief. The tears burned down my smeared face and discouragement flooded my mind and heart. All I wanted was a form of rest at that moment. With Chronic illness sleep (if you can obtain it) is your best friend. Your brief escape. Your peace of mind for the time being. I'm so grateful that even despite all the pain I feel, I'm still able to sleep soundly and forget my agony for a small moment. And with that, there are so many more small moments in life that I feel incredibly blessed to be a part of.
Coping with chronic illness is all about looking to the small moments. I'm so grateful for my family and close friends that I have that bless me with those small memories of joy during a hard time in my life. Life is not all bliss, but seeing the bright side of even the smallest things will bring just enough light into life to make it through the day. So to all that are struggling through the holidays, (or anytime of the year in that case) you're not alone. You're loved, and I pray that every small moment of joy will flood your heart which in turn will allow sorrow to flee from your mind. Look to the little bits of joy that life brings. It's those things that will get you through your hardest times. I hope your holiday season to be full of love, and I hope we can all find Christ in Christmas. I wish you enough strength to get through the holiday season. Happy Holidays, and Merry Christmas.
There's a special kind of heartbreak that comes from having to say goodbye to people that I have come to know and love. It's the kind of heartbreak that accompanies the sense of failure and defeat that festers inside my heart as I turn the page of the story of life and move forward into a new chapter. I recently experienced all these feelings as I drove out of my college town and back to my home town where I can heal from the afflictions that have been burdening my body and soul since I began my journey into the college world, and inattentively before that.
I never asked for this. I never asked for Lyme disease. I never asked for long painful nights, decreasing grade percentages, extreme exhaustion, and my loss of ability to think straight or focus. I never asked to leave all the people that I came close to. I never wanted to be a quitter. I'm only a freshman in college and I've already failed at surviving my first semester. My hair is thinning out, my skin is breaking out, my muscles ache, my brain is exhausted, my heart is breaking, I feel like my body is literally deteriorating beneath my skin, and my emotions are screaming for help inside me. There's something extremely devastating about having to put all of my dreams on hold for an illness. It's days like today where I wish I could just crawl into my cozy bed and disappear from this cruel sick world.
These particular thoughts cross my mind almost everyday. I am determined to fight long and hard until they are cleansed from my heart and mind just as the bacteria that is eating away at me will be cleansed from my body. I'm not a failure. I'm not a quitter. There are much worse things than Lyme disease in this world. I truly believe, even on my worst days, that this disease is a blessing in disguise even if I don't quite understand why or how. Right now I'm discouraged and scared. My treatment is about to be increased and with that comes increased herxheimer reactions, which means increased fatigue, pain, anxiety, and depression. I'm not excited for the incredible journey ahead of me, but I'm ready to fight long and hard. Lyme disease will not crush me. I refuse to let it crush me.
I find great comfort in knowing that God is with me through this journey, just as He is with everyone in the world that is currently suffering from the recent horrific current events that have taken place over the past week or so. My faith is strong, my hope is never unending, my prayers are always continuing. God hears and knows our cries and He can and will give us peace. I hope that through each of our individual trials and afflictions we can all remember Him in these increasingly hard times. Peace will come. Rest is just around the corner. God bless.
"Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light." -Matthew 11:28-30