Dear New York Times,
It pains me to know that journalism has diminished to the point where fact and fiction are so tightly entwined that the people can no longer decipher truth from error.
I recently read your article entitled "Me Son Got Lyme Disease. He's Totally Fine" by Apoorva Mandavilli which stated many falsehoods about a disease that plagues thousands of people and destroys hundreds of lives to which everyone seems to turn a blind eye too. While I am so happy for this family and that her son found an easy solution, this is not the case for hundreds and thousands of Lyme families all over the world. It seems to me that while people are slowly being tortured to death, everyone else seems to be running around screaming that "it's not a big deal," and that is a tragedy that needs to be reevaluated at it's finest.
But at this time I won't speak for the hundreds and thousands, I'll speak for myself. Because coming from the girl who came home from high school every day to her mother in seizures and screams due to insufferable pain, and then found herself in that place just a couple of years later, Lyme disease is nothing to downplay, and nothing to claim that we're all crying wolf when the wolf in this story is 100% real.
Late-stage neurological Lyme disease destroys lives, disables bodies, kills people, and is one of the most painful and complex diseases that a human being could be forced to experience. I wouldn't wish Lyme disease on my worse enemy because when I was eighteen, my world stopped in a black hole of pain and agony, while everyone else's world seemed to keep going.
Sauna Detox Protocols
Endless Pills and Supplements
Lyme disease is far from "easily treatable" and seemingly impossible to cure as seven years later, although we've seen improvements, our battle with Lyme is far from over. For without constant vigilance, Lyme returns and it returns with a vengeance.
I was diagnosed with Lyme. My blood test came back positive. Lyme disease is real. And to silence a community of people who have worked so desperately to be heard so that others do not have to suffer the same battle alone is not something that is ever okay. We will not be silenced, because the silence that is forced upon the Lyme community every day is insufferably loud. Because if you actually had to hear it, it would break your heart.
Lyme disease can be a debilitating chronic illness, just like it is for me. In the case of chronic Lyme, there is no room for fiction, because these are the facts.
You can write your own letter using the #NYTIMESTHISISLYME to spread real awareness for this disease, and you can read the original New York times article here.
"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
I wish I could tell you that it was going to be easy. I wish I could say that the road of Lyme disease was something that everyone understood and that there wouldn’t be moments of disappointment or despair along the way. I wish I could explain that there aren’t very many tears and that there is an absolute solution to it all. I wish I could express to you that it wasn’t as mindboggling and scary as it is.
The truth is that Lyme disease is one of the most difficult adversities that a human being could experience. Lyme is commonly all encompassing, meaning that it will impact every ounce of your life. And at some point, you’ll find that you’ve been changed forever and that there is no going back to the person you were before. The day will come that you’ll glance at yourself in the mirror and you won’t recognize yourself. That first day of sudden realization will be met with tears and grief, but with time will be transformed to acceptance, gratitude, and hope.
The reality of Lyme disease is that all of the pain and hardship may be strikingly real. However, I can promise you as well that the reality of Lyme disease can also have an elegant beauty about it that is found deep within the veins of your pain and struggle. A beauty that is born from your strength, resilience, courage, and determination to continue forward the best you can despite your difficulties.
There may be pain and tears of sorrow, but there will be days of relief and rejoicing of your victories. There may be anxiety and despair, but there will also be moments of peace and gratitude that runs deeper than it ever did before. There may be loneliness, but there will be a connection and love from God and others deeper than you have ever imagined. Furthermore there may be days where you feel unlovable and worthless, but your continuing faith and persistence will prove otherwise.
You see my friend, it may be piercingly difficult at times, but it is those difficulties that will shape you into the glorious person that you were destined to be. For progression, growth, and grace bloom out of the deepest adversities.
You are not alone. You are strong. You are loved. Don’t give up. You may have Lyme disease, but Lyme disease will never have you. Your body has the capacity to heal and there are resources and protocols out there that can and will heal you with patience and persistence. There is hope and healing ahead.
Stay strong my friend. For there are battalions of people and angels rooting for you and cheering you on in your journey of Lyme.
A Fellow Lymie
This post was inspired by Lyme Now who has kicked off Lyme awareness month by starting the #lettertoalymie series. You can check out their website and read a lot of other letters to Lymies by clicking here!
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.
My dad woke me from my restless slumber with an exhausted breath of air. I groggily rolled over on my lumpy air mattress and looked at my phone. 2:00am. I inquired as to why he woke me as he instructed me to turn my phone off due to Mom's hypersensitivity to electricity. All of a sudden I understood why he woke me as the familiar groans of extreme pain filled my ears. I'd gotten so used to hearing my mother's cries in the middle of the night that my heart was almost numb to the heartbreak that came with each cry. I did as I was told and watched as Dad made his way back upstairs through the dark shadows of the house to tend to my mother.
I rolled over and pulled the blankets closer to me. My sister's basement was so cold, and my air mattress felt like it was trying to swallow me up. I contemplated moving to the couch in attempt to get warmer, but I couldn't convince my exhausted body to move. I contemplated the events that had taken place in the last few weeks. It had only been a couple weeks since my parents and I had left our house in the middle of the night and moved in with my sister and her husband in order to flee from the electrical power lines that towered up next to my house. My mom once described her hypersensitivity to electricity as "literally feeling the electrical current moving through her veins." I shuddered at the thought of that level of physical pain searing through someone's body and rubbed my eyes in frustration. So many memories of horrific nights surged through my memory as I lay in discomfort. Eventually I was able to lull myself back to sleep, despite my hyperventilating mind.
I woke up to a sudden rush of agitation. My Dad had woken me again and his voice sounded desperate. I knew something was wrong as he informed me that Mom's symptoms had increased and she was continuously getting worse. I wasn't quite sure what he meant by that, but I knew it was going to be a long night. I quickly threw my covers off of me and rolled off the edge of my mattress. A cold burst of air slit through my nerves as I got up and ran upstairs. I ignored the cold and made my way to my mother's bedside, catching a glimpse of the kitchen clock. 4:00am.
As I entered the room, my older sister was already settled on the side of my mom's bed. My throat tightened and my stomach tied itself in knots at the sight of my mother in that dark room. That's when I knew. My mom was ready to die at that moment. She was ready to give up, to call it quits. She was intense physical pain and she couldn't do anything but feel completely helpless. That night, my mother was literally staring death in the face.
I crawled up next to my mother and cried. I couldn't handle the vision of helplessness that was my mother at the time. One by one my siblings showed up at the front door. It seemed as though a dark cloud had washed over the house that night as my mother quietly spoke what we thought would be her last words of hope, love, and the beautiful reminder that families are forever. I laid next to my mother in despair and clasped her hand as hard as I could, swearing to myself that I would never let go. I'll never forget what she said to me as I pleaded "Please don't die! Please!"
Her words pierced through all of our hearts that night. I felt as if the floor had fallen out from underneath my feet, and that I was about to lose everything that I held near and dear to my heart. We all solemnly stood in the kitchen. My bare feet frozen up against the kitchen tile. I thought that any second now my body was going to break like a shattered vase. My brother approached me and embraced me with love and empathy. I've always looked up to my oldest brother and his embrace was incredibly comforting at the time. What seemed to be a few minutes passed by as we all loaded up the cars and drove Mom to the hospital. It had been such a long time since I had seen my family together like this all as one and I wanted to cry. My silent prayers filled my mind and heart as we all paced the hospital lobby and awaited the news of death that we prayed would never come.
That day holds a special place in my heart. I learned a great deal about long suffering, enduring to the end, and how precious life truly is. My mom didn't die that night. In fact, she's on her journey towards healing, same as I and we're walking this path together now. The strength that my mother has especially in the worst of times is truly incredible to me. We experience things in life to learn, grow, and become the people that God intends for us to be. Most people don't even believe that Lyme is a real thing. And if I wouldn't have suffered that night I would not be in as good of shape that I am now. I would not know what my disease is. I wouldn't be able to help people. I wouldn't be able to be a source of comfort and inspiration that I so desperately wish to be in people's life. I know suffering. And without my knowledge of suffering I wouldn't know joy.
I share my stories in order to educate the wandering minds of the people who don't know any better. There are people out there right now that think I'm crazy. That it's all in my head. And all through my mother's suffering thought she was crazy as well. Well it's not all in my head. It's real! And I truly feel for everyone out there that is suffering from this insufferable disease. But it's a great comfort to know that we're NOT ALONE. There is always someone who is fighting right by our side even through our worst battles. Lyme is a real thing that steals people's quality of life everyday, even as we speak. But we can stand by each other as a source of support and hope. I truly have hope for healing. Just because torment and despair stares you in the face and comes knocking at your door, does not mean that you have to let it in. Here's to hope for healing, and hope for a bright future, even in the midst of suffering.
It was a bitter cold December night. My eyes flickered open at the sounds of anguish and pain that I was so used to hearing in the middle of the night. I caught a sharp sliver of the moon out of the corner of my eyes. It pierced through one of my windows and gleamed down on my face as if it was mocking me. My heart felt heavy as I rolled over and pulled my blankets closer to my body, asking an inanimate object to protect me and take my fears away. I forced my eyes closed and wished I could do the same with my ears as the insufferable lamentation rang through my head and filled my aching soul.
I eventually lulled myself back into an unsettling sleep. Silence. Sweet silence. Sweet bliss.
I woke to the screams. The screams of my mother laying helplessly on the floor, going into a seizure and for a small moment in time losing her ability to move, speak, or feel. The screams pierced through the bitter cold air and traveled straight to my heart where it stuck like a dagger. Without hesitation I flung my blankets off and pushed my pillows out of the way, numbing myself to the bitter cold air that had been absent in my cozy cocoon. Following the sound of the screams, I ran to my mothers side on the living room floor. The darkness hid the shadows of her pained face. She was in so much pain at that point that she was losing her ability to function at all and I could almost physically see the small amount of light that was left in her fading away to nothing.
My dad knelt by her side with his hand in hers the entire time. His drained expression silently and desperately cried for help of any kind at that point. I fell down on my knees next to my mothers head. I thought this was it. I thought she was dying. I thought this was my last moment that I would ever get with her, and all I could think was "Dear God! HELP US!!" At that point we knew that prayer was the only thing that we could do. I frantically fiddled with my phone to call for help as Dad stopped me, knowing that they would do absolutely nothing for us. Knowing that it would be another night of being told that she was crazy and there was nothing they could do for her. With all hope lost, tears filled my eyes and the feeling of uselessness flooded my soul.
I've recently been reflecting on that experience that doesn't feel like it was all that long ago. I had no idea why our family was suffering so much and I always wondered, "Why us? My me?" It wasn't until months later that we found out that the source of Mom's suffering was Lyme Disease. And not until many months later did we find a treatment option that actually worked. I remember thinking that night would be the last night ever spent with my mother. I remember the fear that pierced through my heart and into my aching soul as I sat next to my dying mother on my living room floor. At that point I thought that healing was impossible, and I thought that life wasn't really worth living. I never thought I'd be grateful for an experience as horrific as what my family suffered that cold December night.
I remember about five months ago, I lay folded up in excruciating pain in the very same spot that my mom had suffered so many nights before. I remember wanting to scream my pain away, and feeling as if I couldn't breathe because it pierced through my stomach so hard like a knife mocking my very existence. It was then that it hit me that I was suffering a very minuscule piece of what my mother had to go through so long ago. And in some special way, I felt connected with her. I gained an understanding and a special kind of compassion that I didn't have before. It's not craziness. It's pain. Horrific, unbearable, excruciating pain. I wasn't suffering even half of what my mom suffered through so many days before, but I was feeling for her. And my love for my mother grew ten times more than it already was.
Back in December I didn't realize why I had to watch mom suffer. I didn't understand why this trial was being thrust upon my mother, and my family. Now, I feel like I understand a little bit better. If my mom hadn't gone through that, we never would have found a treatment option. I'd be sick right now and we wouldn't know why. If I hadn't gone through that I wouldn't have learned the sweet lesson of compassion. I wouldn't be who I am today for so many reasons even beyond that. I'll never forget the screams that woke my restless mind that night. And with that, I'll never forget the love that I have for my mother. It's a blessing she's alive today. I know that, and I hope that through Chronic Lyme I can learn to help others and have the opportunity to lift others burdens as they may be going through similar trials. God works in mysterious ways. Ways that I still don't completely understand. But I can honestly say that there is a reason why we suffer. I wouldn't be who I am today without my suffering. I'll never forget the screams, but I'll also never forget my faith that powers me through my most unbearable times.
It recently occurred to me how much I didn't appreciate the little comforts in life until I lost those comforts. I remember back to a time when my mom was in the most dreadful stage of her journey through Lyme. My mom and I sat in the parking lot of Costco while my dad was inside buying groceries. I remember the moaning and groaning that fell out of my mother's mouth as we sat in that car. Back then I wanted to cry for my mother everyday. My strong, beautiful, incredible mother whose life had literally been diminished to nothing. Where common activities such as going to the store were a rare instance in her life. I wanted to do something for her. I wanted to take her pain away from her. Impossible as that was at the time I tried to keep her spirits up through talking to her and keeping her laughing. Hearing Mom laugh back then was almost like partaking of a breath of fresh air.
As we sat in the car that day I remember pulling out a small little pad of paper as I told her that she should make a list of things that made her happy in order to increase her spirits. After promptly writing my dad's name and my own name at the top of that list I asked her to think of other things. The conversation went absolutely no where from there. She sat there agonizing her pain level and I sat there feeling completely useless. I remember going home that day and writing a list of things that made me happy. I remember that with tears in my eyes, I promptly wrote, "Mom getting better" as number one on that list.
It's really occurred to me in the past month how much I need to appreciate the little things in life. About a month ago I discovered that I had Chronic Lyme. And two weeks ago I began my treatment. It's been a really rough journey. My diet has been diminished to almost nothing. No more chocolate... No more comfort food... No more going out with friends after study sessions... No more dates that involve food. No more anything that tastes good. Not to mention, the things that I do have to eat I detest. Drinking straight vinegar and garlic in order to kill the bacteria that's eating away at my body is a far from pleasant experience.
Sleeping has been a wide awakening (literally). In order for my treatment to work properly I have to sleep with oxygen every night. Yes, that means one of those scary looking machines that disturbs the peace. And those long never ending tubes that I can only hope I don't accidentally strangle myself with while I'm sleeping. Not to mention that I have these two awkward tubes shoved up my nose with the oxygen that burns all the way through my sinuses. It's ironic how oxygen is supposed to help you breathe but when you're on the machine in the middle of the night it feels more like it's trying to murder you in your sleep.
It hit me as a shock to find out that having random shooting pains that go up through my stomach and into my spine are not normal. Feeling light headed as a result of standing up is not normal. Having a heart rate in the high nineties all the time is not normal. Being exhausted and ready to crawl back into bed by the time noon rolls around is not normal. Feeling like I'm losing my mind because my body won't keep up with me is not normal.
Now, I tell you these things not because I want you to feel sorry for me. Not because I want a pity party, and not because I want attention, but because these things are REAL THINGS. It hurts! It's exhausting! It's uncomfortable! It's real. And it's okay. God didn't put us on this earth so we could be comfortable. We were put on this earth to struggle. To experience pain. To feel things even when they're unpleasant. It is through uncomfortable experiences that we learn and grow the most.
Back then, my mom didn't know what brought her joy, but as I've watched her grow and heal, she appreciates things so much more now. As do I. Mom's eyes light up at the sight of a beautiful sunset, and she gets excited simply by spotting a dear in a near by meadow. Hearing her laugh over some dumb joke that my dad told, or hearing her comment on how pretty the changed autumn leaves are is incredible. All of those small little blessings bring her joy. Mom discovered how to find joy in the small stuff, because at one point, she lost the small stuff. And at times, the small stuff is all she had. It's amazing how sometimes the small stuff is transformed into incredible miracles.
For me, I appreciate any moment of sleep I get that I don't have to have my oxygen impaling my nose. I appreciate when I get to school on time even though it seemed pretty impossible because I woke up from my sleepless night incredibly late. I appreciate when a friend asks me how I'm doing. I appreciate a short little phone call or text from a friend or family member. I appreciate every beauty in nature that crosses my path. It's strange to me how people are so oblivious to things like beautiful rainbows, the flap of a butterfly's wings, the beautiful changing fall colors, or gorgeous little rain showers. Those things hold so much depth, beauty, and joy in them. They're a piece of beauty that God so obviously bestows upon us on a regular basis. God's small little blessings are in fact incredible miracles!
Yes, I have Lyme, but it's through the little things that I come to find joy even in my time of hardship. By all means, Lyme Disease does not make life easy, but it sure makes small things beautiful.