I once used to be a young girl that found every detail in life to be absolutely magical. I used to record every moment that seemed completely enchanting on little strips of paper, and I'd fold them up and put them in a small jar that I kept on my dresser. And as I now look back on those moments that I never would have recalled otherwise, I'm reminded that every one of those moments was perfectly ordinary, but my mind recorded them as memories that were special.
I've jumped in huge piles of golden leaves whose crunch sounded like a symphony to my adolescent ears. I've smelled fresh baked cookies only to run into the kitchen carefree and joy-filled. I've balanced on sidewalk curbs and rolled down hills with the only side effect being pure laughter. I've watched clouds form shapes in the sky almost like magic, and I've walked barefoot in the grass without a worry in the world.
I've taken long walks with people who make me wish that the path we were on wouldn't end. I've watched sunsets and prayed in small groves of trees. I've felt my heart skip beats because I thought I was in love. I've waded in streams knowing without a doubt that my feet would leave footprints in every place I've tread, and known later that footsteps and hand-prints can remain in hearts as well.
And now... I grasp these beautiful moments tight because throughout the change and pain in life I find it significantly more difficult to experience these things. Or perhaps the difficulty is less from the lack of opportunities, and more from the lack of my ability to see artistry and charm because life can often be coated in tragedy, heartbreak, and pain.
So how does one compile all of the magic and the pain? How does one process the Olympic moments with the pitfalls and darkness? Perhaps the beauty of life is that we are not required to live it all at once, and we are not required to live it all by ourselves.
So, for now, I'm putting one foot in front of the other and leaning for dear life against the One who has experienced this all before. For now, I'm praying for eyes to see the magnificence that is so graciously placed before me, and I'm praying for fortitude in every ounce of pain and suffering that I may experience.
And most of all... I'm praying for all of the cuts and scars to be healed because carrying this all on my own has proved to be soul-destroying.
And then I seek for extra faith and practice deep trust. Because my God and my Savior have never let me down, left my side, or broke my heart, so why would I doubt for a second His infinite ability to heal my body, my heart, and my soul? For as I practice and reach for daily faith I'm reminded that God is writing an unforgettable and breathtaking story for me, and He's simultaneously preparing me for glory and joy that I can't comprehend in this life.
So may we all remember the enchanting moments that are perfectly ordinary. And may we all learn from life's agonies that prepare us for life's greatest joys. For no being can live in a state of endless bliss without missing some greater exquisiteness, and it's very possible to be in the midst of suffering while simultaneously witnessing miracles. There is room for all of it in life. And we must remember that there is a purpose for it all in life. As we do that, we'll walk paths that will bring us to our greatest peace and joy. And that's worth living for.
This truth is for all of my single ladies! (Or should I say... single Lymies!)
It's no secret that a lot of people my age are out dating, getting engaged, getting married, and so on. It's also not a secret that I follow lots of chronically ill moms on social media because they inspire me and I aspire to be in that place someday. But alas, it also isn't a secret that chronic illness tends to put a damper on dating, and in my experience can sometimes have its way of extinguishing one's dating life altogether!
But I'm not sharing this truth to write my lament of a single Lymie... I'm sharing this truth because, in a world where I constantly feel the pressure to date and not be single, I sometimes think it's okay to be single for the time being.
A relationship is not a prize or a gold star that you wear on your sleeve. The person you love should not be a status that makes you look good on Facebook or Instagram, but rather love finds you with God's timing. And in the meantime, every individual has immense worth and potential on their own.
It's no joke that Lyme disease is usually the deal-breaker with many men, but it's also a truth that I'm grateful to my Lyme for weeding out the liars, the users, the shallow, and the ones with all the wrong intentions. Life gets very real with me very fast because of my illness, and every guy I've ever dated always seems to know that the second the words "chronic illness" escapes my lips. So it can get discouraging, but it doesn't take away my abilities to do incredible things while I patiently wait for God to send me the man that will support me in my illness just as I plan to support him in whatever comes our way.
So exercise patience. You are lovable, even with an illness. And you are incredible, no matter your ability... or disability in this case... True love comes in the right place at the right time, and in the meantime, Lymies and other chronic illness warriors can always choose to live their best lives. Thriving is always possible, in sickness and in health.
I have been learning this profound lesson about happiness lately and this is it:
God wants ME to be happy!! Not just everyone else, not just healthy people, not just people who seem to have it all together, but ME. Little, insignificant, sick, tired, and sometimes a little bit crazy ME.
For the longest time, I felt like I wasn't supposed to be happy. Like if I was happy it meant that I wasn't being refined enough in life, and I should be in pain because that's how I'm going to learn the hard knocks of life right?! WRONG. As necessary and as unavoidable pain and suffering are in this life, the end goal for each of us is still pure joy. Illness for sure has a way of refining you, to which I am thankful for those painful moments that teach me amazing lessons, but because I have Savior who empowers and a God who LOVES me, I know that I can find happiness despite my circumstances.
Don't get me wrong, in NO WAY is this always easy, but if you're in that place of darkness right now I BEG OF YOU; please don't quit. Please carry on. Please put on your extra strength and remember that pain is not meant to last into the eternities. It is meant to refine us in the here and now, and WE WILL GET THROUGH IT. God is bigger than us. And He can and will ease our pains.
The truth is that Lyme Disease or any chronic illness is no joke. It can be very intense and very exhausting on the daily. I've often found that there are many people who choose to walk in and walk out of my life because if you get too close too me, my natural fire can tend to singe your eyebrows!
Here's my response to anyone who has made comments about how I can be "a big sacrifice" or a "burden" because of my illness:
Everybody that breathes can be viewed as a sacrifice! Every single person in this life will reach a point where they will be called to go through deep adversity and trials, and the reason for that is because we do not learn the greatest of life's lesson without a little sting in the process. We cannot truly know and appreciate joy and peace if do not first pass through intense pain. As we all come to those times in our lives, it would do as all some good to take each other by the hand and offer LOVE and SUPPORT instead of criticism and fear. (Believe me, this illness gives me enough fear without other people adding to it.)
My reality is that I may cry a little more and little harder than most, but I also laugh a lot harder and a lot louder than most. I may experience intense panic and PTSD, but I've also found that it doesn't take much to get me to smile anymore. My heart may cry out in agony a little more frequently that I ever thought it would; but thankfully I've found my sparkle through it all that comes from being unique and rare.
Everything in life has it's opposite. The goal is to look for the good and focus on the immense beauty that is often found among all the ugly. And the goal in our interactions with others is to see them for who they really are and who they have the potential to be, and then to love them through this scary, intense, beautiful, and miraculous life.
This phrase is used pretty frequently in my house: "We'll take care of you, but we won't feel sorry for you!" Sounds harsh right? It may sound a bit harsh at first, but when you live in a house with only chronically ill people, you learn really fast that if you waste time feeling sorry for each other you never get ANYTHING accomplished in a day!
We all know the reaction of "I'm so sorry!" that chronically ill people commonly receive from others. I always feel minorly guilty when someone tells me how sorry they are that I suffer from chronic illness, mainly because I'm not sorry. I won't downplay how difficult chronic illness can be. I won't downplay the trauma, the dark nights, and the excruciating pain... but through it all, I've found that I just don't have the time to be sorry about it. I talk about my illnesses the same way that any other person my age would talk about college or career because it is such a big part of my life. I mention it casually in conversation because hiding it can be exhausting, and I talk about it all the time because raising awareness for such realities is SO IMPORTANT because I believe in hope for the chronically ill.
With that said, chronic illness is a PART of me. That does not mean that it defines me or makes me any less of a person or any less capable. I may have certain disabilities that can make life a little harder. I may fight every day. I may face darkness that others don't have to, but I do all of these things unapologetically because self-pity will ultimately get me nowhere.
So when someone opens up to you about their illness or deep dark sufferings, tell them you LOVE them. Tell them you BELIEVE them. Tell them you are HERE for them and you're NOT LEAVING. "I'm sorry" often silences conversation in this context. Say you're sorry when you've wronged someone. Don't say you're sorry because you don't know what else to say. Illness is for sure a tragedy. But every single one of us is currently learning to transform tragedy into beauty, and pain into healing. We are all simply looking for people that are wiling to help us along in this journey.
Comment below if you can relate and what you'd prefer people say to you when you open up about your illness!
Who feels like happiness and enjoyment that come your way are often accompanied with guilt because you're chronically ill??
I know I struggle with this REGULARLY, and so I'm here to tell you that you DO NOT have to feel guilty or ashamed during the rare moments of joy that bless your life when you're chronically ill. Lyme disease is an INVISIBLE illness, as are many chronic illnesses and disorders. We may not "look sick" 24/7, but you do not have to prove anything to anyone. What is "sick" supposed to look like anyway? I'll tell you that some days it's ugly, but some days life is good and those are the days that I must embrace in this journey. Pain and suffering do not have to be validated or believed by others in order for it to be very real, and very scary. And despite all of the pain and agony that I've faced in life, I've found that there is an awful lot of beauty and joy to be found as well; (it just may take a little longer to find than it does for the some).
So the next time you're having a moment of joy, gratitude, laughter, love, or happiness, EMBRACE IT! Don't let guilt rob you of what you are worthy of, which is immense love and happiness. Yeah, we're sick and in pain (sometimes more often than not), but chronically ill people also have a way of lighting up any room that they happen to be in.
Suffering is inevitable in life. You cannot avoid it, for it is often what shapes and transforms us into gold. But despite it all, God wants us to be happy. And through Him, we can find that happiness even in the midst of suffering.
Comment below if you can relate and tell me about your life's happy!
No matter how old I get, it always seems that around back-to-school season I can manage to conjure up that feeling of an antsy little school girl; eager and apprehensive for her first day. It often seems like no matter how hard I attempt to avoid it, I get that strange "butterfly in your stomach" feeling, accompanied by anticipation for the new school year. Insecurity and unstable footing repeatedly accompany the nostalgia, and it often leaves me feeling sick to my stomach.
How is it possible that something as simple as everyone going back to school drudge up such ugly and unnerving feelings? Because these memories are a vicious cycle of guilt and shame that circle through my mind every fall semester... Because my life looks VERY different from all of my friends in college.
I was eighteen years old when I walked through the door of my first apartment. I was simultaneously eager and terrified for the adventure that was right at my fingertips, and everything smelled new and fresh. I was always terrified of this first step into adulthood, but feeling it painfully necessary I managed to dive headfirst into my first semester of college.
I grew up singing, and I always felt like my vocal abilities were a gift from God, something that I had great passion for, and what my future held. Music was what I was supposed to do, and all that I thought I wanted or knew how to do. I was a vocal performance major, diving into 16 credit hours of music classes. And as nervous as I was, I felt prepared and ready to delve into endless hours of vocal practice, theory, piano basics, aural skills, and performances. Music was about to consume my entire existence, and at the time I felt perfectly okay with that.
I'll never forget my first day of college as I managed to get lost seemingly dozens of times, and mentally stumbled over all the different textbooks that seemed to make my head spin! That quiet little mouse of a girl sat quietly in the back of each class with her stomach in knots, avoiding eye contact at all times and trying desperately to remember every ounce of theory and vocal technique. For the most part, I was like every other college kid: young and eager for my future to begin. But what most people don't know is that I was far from being an "average college kid."
My symptoms began long before college, but I easily managed to push them to the side in attempts to fit in with my peers and create a future for myself. When college hit, my symptoms simply spiraled downward and left me experiencing enough discomfort that before my first semester I was tested for coinfections and other possible health problems. I remember laying on a bed telling the nurse about the college I was attending as she took thirty vials of blood. No matter what, I wasn't going to let anything get in the way of my college plans.
School soon began and among all of the regular college stress, I began to experience extreme fatigue, joint pain, muscle pain, regular panic attacks, and extreme pain in my lower abdomen that would come in waves. The problem with this predicament is that I was "supposed to be in college," having the time of my life and learning all that I could for the benefit of my future, but these seemingly always lingering symptoms made it near impossible to successfully do anything. I recall coming home every day and crashing on my couch, only to wake up realizing that I was late for a tutoring session or a rehearsal, which only caused greater stress and anxiety, which then caused an increase in symptoms. With this brewing storm over my head, my grades dropped, and I found myself fighting for test accommodations that didn't even pan out to be all that helpful. I found myself crying on the floor of my apartment regularly, wondering why I seemed like the only college kid in the world that couldn't handle school in any way, and I often spent Saturdays on the couch or in bed.
I was diagnosed with chronic Lyme disease about half-way through the semester. Treatment began rapidly, and in my attempts to stay at college I decided to move forward with treatment on my own, in an apartment with roommates that probably thought I was completely nuts. Treatment added the extra stress of diet changes, sleeping with oxygen, and taking ridiculous amounts of pills and supplements every day that I hardly had time for. And at the end of every day when I would check and record all of my vitals for my doctors, nothing changed, and nothing seemed to improve.
Throughout all of the pain, anxiety, and desperately trying to stay on top of school, I prayed desperately to know if going home was the right thing to do, and I got an overwhelming and resounding yes. I found myself walking through the front door of my house and collapsing on the floor about two thirds into my first semester of college, and I never went back. And I never will.
I do not record my story of a 22 year old college drop out to claim that everyone should follow in my footsteps, or to say that those who are in college should quit now before they're ahead, for I don't actually believe that. What I do write this for is to say that college does not necessarily equal success. Those who have walked the path less taken, away from university and college life, to heal from chronic illness should be celebrating that MASSIVE victory, not feeling embarrassed or ashamed from their differing experiences.
I learned fairly quickly that when you choose not to attend school in your young adult years, everyone and their dog will try to convince you of all the reasons why you should be in school. It's important to remember that those people do not know the battles that you are fighting and SUCCEEDING at, and you do not have to allow uneducated comments even an ounce of your ground. For your ground is one of blood, sweat, and tears that we often face by ourselves. For our arena is often unseen and unrecognized, yet very real, and very scary.
When I first left school, I wanted desperately to go back. I craved the need to fit in with my peers, and I felt like an utter failure because for the first two years of my Lyme battle school what absolutely impossible. What I wish I knew back then was that life does not end when school does, and there are often things in life that can educate you in ways that a college education possibly never will.
God has been my personal mentor and tutor for five years now, and I couldn't be more happy with my decision to leave and not go back. I have now attended an online school where I received my health coaching certification. I'm well enough to work, and am starting my own business. I find joy on the days that I feel good. And on the days that I don't, I have room to breathe and recuperate. Life is very different than what I ever envisioned it to be when I was a freshman in college, but I am proud of my battles that I have walked out of broken and scarred, but still held together by God's grace and enabling power.
There are two ways that you can look at an experience like this: call me a college drop out, or call me thriving in the Lyme life. Either way, I'm happier than I've ever been as I seek for success and happiness. I no longer believe that success comes from a degree, as big as an accomplishment as it may be. The greatest success we can experience in this life lies within our hearts, our relationships, and our ability to endure and conquer the afflictions of life. Your worth or intelligence is not based on your college education. Quality of life is more likely measured by your heart and your spirit and how they propel you to whatever beautiful destination is in store for you.
Let's talk about dating for just a minute. Dating, relationships, friendships, social outings, you name it; I guarantee that anyone can relate to feeling like their illness is CONSTANTLY third-wheeling it with them!
It's normal to feel different and want to spend most of your energy on hiding your differing lifestyle from your friends, dates, or even family at times. I've found that it's best to just be yourself, and if your illness happens to rear it's ugly head into a conversation or situation and people don't response well, then those people are not worth having in your life anyway. Illness and disability do NOT define you. It may make my life look a little unique. It may add a little sparkle to the conversation, but in no way does it determine your worth or your power in life.
Every single person on this planet has baggage and problems. Everyone has things that we are working on. Everyone has that something that third wheels it with them. I used to have to work on getting out of bed and walking across the room. Now I work on not letting PTSD run my life. Whatever it is, the important thing is that I keep aiming for healing, improvement, and joy. Chronic illness may be something that is often accompanied by stigma and fear in the eyes of many, but the truth is that chronic illness has a way of bringing out the strength and beauty in those who carry that cross. I may have Lyme disease, but Lyme does not take away the strength and spunk that comes with it. As is with all chronic illness warriors.
Comment below if you relate and tell me what character qualities you have that your illness will never take away from!
We live in a world of LABELS! We label EVERYTHING based on what we can see on the surface, and the reality is that the true depth of most people is found in their heart, which is something that takes time to see.
I've recently been having a difficult time navigating talking about (or not talking about) Lyme with healthy people. I've had so many experiences where it seems like the second I mention Lyme in a friendship or relationship, then the massive brick wall of Lyme disease is now placed between me and that person. This phenomenon of a Lymie's social life can often leave those of us who are suffering feeling alone and misunderstood.
While it's true that Lyme disease plays a huge role in my life and has sculpted me into the person that I am today, I promise that I live for more than just dozens of pills, treatment protocols, and eating organic. I'm not just the "sick girl" that needs help. I'm a girl that loves writing and singing. I'm a girl with the big heart that laughs a lot and has this deep need inside her to help those who are suffering. I'm the girl who's been beaten and broken down by the storms of life, but is in every way healing and striving every day to keep a smile on her face (even if some days I totally fail at it.)
The truth is that I will proudly wear the title of "Lymie" on my sleeve, but that doesn't mean that I'm not still 100% Claire. There is so much more to people who suffer from chronic illness and disability. You simply have to give them a chance. You are not the sum of your trauma, and you are not your illness. Most of the souls inside of these broken-down bodies are absolutely beautiful, and we must remember that as we interact with those who have walked different paths and traveled difficult roads.
Comment below if you can relate to having a hard time getting through the "chronic illness wall" with people, and what you do to remedy the negative labels that people can place on the chronically ill!
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.