We want to thank each and every one of you who submitted a question to us about us, friendship, relationships, and coping and maintaining when one or the both of you face chronic illness or disability. We had so much fun writing this post, and we hope that as you read it you will gain as much insight as we did writing it! For the purpose of this particular post, and to make it easy for all of you to tell our answers apart, Zach will be answering questions in BLUE and Claire will be answering questions in RED. Quick Intros:Claire: I'm Claire, I'm in my twenties, I love crafting on weekends and working hard when I can on the weekdays. I love goats, the color pink, and anything beautiful from the inside out. I manage a small gift shop during the day, and I'm a complete farm girl in the afternoon. I'm a certified health coach, blogger, and lover of learning. The truth is that I wear many hats. There are some days where I feel like I can take on the world, and there are other days where I submit to laying in bed and managing pain and sickness. This is because I have Chronic Lyme Disease and Endometriosis. I was diagnosed with Lyme about five years ago, two years after my mom was diagnosed with the same illness. Together, my mom, dad, and I have walked the frigid storm of treatment protocols, herxing, flaring, pain, and sickness. We've pealed each other off of the ground after passing out. We've cooked meals for each other through pain and sorrow. We've held each other's hands through tears, and we've walked around the house, arm in arm, sustaining the ones that can't walk due to pain. We have slowly made our way back to quality of life. And although we are not yet "cured," and life is far from perfect, we survive this disease through God's grace, and Christ's enabling power and guidance. The truth about Lyme is that life can still be happy and beautiful even with such an awful and life-altering illness. God grants me that joy and hope when I need it in many ways. He granted me that hope through scripture and prayer. He blesses me with that hope through peace, calm, and relief of pain. He blessed me with that hope when He sent me down to parents who care for me so well. And he grants me that hope through the people who choose to stay in my life no matter how sick I get. Zach: Hi! my name is Zach! To start, let's cover some of the basics: I am 21 years old and I work on an organic farm currently learning many different techniques on how to grow and eat organic. I'm also learning how to maintain my health while navigating my way through the healing process, and in more ways than others, “the refiner's fire." Maybe I am what you could call a wearer of many hats, and acquiring new hats every day! Although some may disagree with that, that's ok, because no disability or illness should stop anybody from doing what they want. I once heard a woman say that “everything is figureoutable." You just have to find out how to do exactly what it is that you want to do, then do it. Simple, right? Now, let's get the large elephant out of the way. You may be wondering what illness or disability I could have because I helped answer some of the questions in this article. I was diagnosed with Tourette's Syndrome. Tourette's Syndrome is a Neurological disorder which, in short, causes a lack of communication between the left and right brain. This lack of communication sends misfired signals to the body creating something you may have heard of called “tics'' (these are not to be confused with ticks…but also an underlying or root cause from ticks). This illness, along with many others, is neurological and physical. This could be why life is more difficult than not at times. As a baby, Tourette's would cause my whole body to shake, and as I grew older I would either drop or develop new tics. As Tourette's caused a lot of energy (to say the least), I often had to find different outlets for this extra energy to be used up. So after many years of basketball in the front yard and then trying many different sports as a teenager, I ended up in the multi-sport game of water polo. Now while I have had this “companion” my whole life, I did however recently discover this was considered a disability. Shocking as it seems this was news to me. I may have considered it at one time, but I didn't allow it. Even though most if not all around me did see it as a “problem,” or an “annoyance,” “different,” “weird,” or in some cases “flirty,” or “creepy,” I never really thought of it as a disability. So I wasn't the most outgoing kid and I didn't have a lot of friends, but this didn't exactly stop me from doing what I wanted to. Nor did it stop me from acquiring a few friends either. I have learned how to overcome through complete faith in my Savior, Jesus Christ. I do know that healing is possible through the refiner's fire. And I know that it is through these fires that we are perfected and healed! What Are Your Symptoms and How Do They Affect Your Life?Zach: Tourette's Syndrome has two parts; it starts neurologically and ends physically. This is possible because everyone's physical actions start in the brain and end as a physical action. Ex. shaking someone's hand, nodding your head, etc. One of my greatest symptoms are tics. Tics are the things as above, but involuntary and random. For example, I have a tic where I flick my pinky finger a certain way, or another tic I have affects my breathing. As I said before, I've had tics come and go or get worse. Tourette's affects my life in many ways. As for the tics, they are there a lot depending on what is going on in the way of moods. This means my emotional state can affect them and make them worse. Being nervous or anxious greatly causes them to become very escalated. On the other hand, if I am calm and comfortable then my tics are very small and lessened very much. Claire: My symptoms vary and include but are not limited to:
One of the most difficult aspects of Lyme is that a lot of people don't believe that Lyme disease is a real illness which then leads to rejection by friends, family, doctors, etc. I've spent a lot of my Lyme journey shedding tears over the disbelief of other people. People don't believe it, or they don't understand it, and a Lymie is often treated as the outcast or the "weird one" of the group. Making and keeping friends has seemed nearly impossible at times, and the crippling physical symptoms along with the neurological ones can seem like the heaviest burden to bear at times. How Did You Two Meet?Zach: The first time I met Claire was actually during an interview with her dad. As was mentioned above, I work on a farm. I also happen to work on the family farm. So I came to find out that she too helped with the interviews. Our first time meeting was very formal and quite short. Claire: Picture this: I'm standing in our work building for the farm (we call it "the white building) with my dad, waiting for some kid to show up for an interview after many frustrating and failed interviews, and I'm wearing a floor-length dress because I had a prior engagement, and Zach walks in. I had zero expectation that this interview would go well, and after many questions towards Zach and a noticeable difference in Zach compared to other interviews and young people we had interviewed, Zach left and we decided to hire him as our ranch-hand. That conversation went something like this: Me (to my dad): "Well what do you think?" Dad: "I like him!" Me: "Me too! Let's hire him!" Let me just say, never in my wildest dreams did I imagine that our hired help would become such a big part of our family. But as he spent time with us on the farm, he quickly over-exceeded his job expectations and became a close friend to me and my parents. All three of us love his addition to our farm and family, and we care for him very much. How Did You Two Become Friends?Claire: It's always good to get along with the people you work with, but it's even better when the people you work with become like family to you. My dad always taught me to treat your employees like family and care for them as such. And with Zach it just all kind of fell into place like that. Every time I'd find Zach in the white building, he'd wish me a good morning and asked how I was doing. This was before he ever knew about my illness, and as a young person in this world, I found it refreshing that a random person who didn't know me inquired as to how I was frequently, when frankly if he didn't want to he didn't have to. Zach and I started training our cart ponies together that summer, and as we did so our conversations seemed to be about anything from school to dating, farming to equine therapy, to eventually sharing our experiences and with Tourette's and Lyme. Zach also happened to be by my side helping me for nearly the entire transformation of my gift shop and we shared so many thoughts and laughs through our experience that we just couldn't help but being friends outside of work as well. Zach: Claire and I became friends through working on the farm together! About a year and a half ago when I started working for her family, we had 2 ponies. So at the time and she would come out later in the mornings to work and brush down the horses so we would have about an hour or so to talk to each other and just get to know each other. I think we also became friends because she thought I was super weird because every time I saw her I would kind of perk up and say "Hi," and ask her how she was. (She admitted that too.) After a while, we started becoming better friends. Fast forward a few months we became close friends and I was washing dishes in the kitchen after dinner! I think we really became friends because we weren't afraid to be open and honest with each other. What Was Your Initial Reaction to the Other Person's Illness?Claire: Common to Tourette's is the fact that if someone with Tourette's is nervous and stressed, their tics are worse. This seemed to be the case with Zach during his job interview. I remember saying to my dad after Zach left, "What was that thing he was doing with his face?" to which my dad replied, "I'm not really sure, it's some form of disability." Dad later came inside a week later after working with Zach and announced, "Okay, Zach has Tourette's!" Honestly, finding out that Zach has Tourette's never really made me see him any differently. Yes, I noticed his tics, but it I think because of my history with Lyme, it never occurred to me that that made him "weird" or "different." Now that we've been friends for over a year, Zach still tics, but I just don't notice them unless I'm consciously looking for them. I just don't see "the kid with Tourette's syndrome." I see Zach and how much of a hard worker he is. I see our friendship. I see his effort and care. At the end of the day, the Tourette's just doesn't matter as much as the person does. Yes we have hard moments. Yes it's not picture perfect because we both have physical and mental struggles. But as we choose to help each other and have compassion on each other through the hard, our illnesses just seem to dissipate. Zach: In all honesty, I don't remember. And to be even more honest, I don't remember caring either way. Although I did care about her as a person because she more than deserved that, her illness didn't really bother me. Whether it was because I didn't fully know at all what it was, or because I didn't know that I would find out many months later what it truly was. Now, I did ask questions just so I could know and understand better. I don't remember being shocked or thinking: “I can't be friends with a sick girl," or “Oh my goodness! How bad is it?” That was probably because I had my own “conditions" (as I called my own at the time), so I just kept being friends with Claire. I didn't want an illness to affect a friendship because that's how I had been treated my whole life; as the “oh you're weird so we can't be friends" kid. I will also say this: Being Claire's friend and having such an amazing friend who does have a chronic illness, has shown me what love truly is. It has also shown me that the illness does not define the friend with the illness but it can define who you or I as a friend really are. How does your illness/disability make your relationship different from other peoples relationships?Zach: The illnesses and disabilities that we have make our friendship different (I think I speak for her when I say this too) from other people's relationships. Our relationship is different because the way the world views people who are sick, is not as they should. Our relationship is different because it is built on an emotional connection to each other and God. It is different because a lot of relationships in the world fail because one or both look inward for what they want rather than looking outward as to what they can give. Claire once told me: "Zach, whenever you do something for anybody, ask yourself this: 'Am I doing this because I truly love this person or for some other selfish reason?” As the scriptures says, “If ye love me, keep my commandments.” So if we love God first and are following Him, we naturally love each other a lot better than if we didn't. Due to our various difficulties, our focus (to the best of our ability, might, mind and strength) is to God because we know that He helps us progress and move forward. When we face a fork in the road or a decision to make, is our choice pointed towards God? Or is it based on what we want? If we love God, we naturally choose the better choice for us and God. If we choose to love God, we choose the best decisions to progress. Similarly, love in any relationship is a choice. No one just falls in love. We either choose to love, or we choose to stop loving. I was once also told by Claire, that “Love at first sight, is just lust at first sight.” True love is not what the world portrays it as. Life can be truly hard, but true love does not falter because of a truly hard situation. Especially when we put our trust in God, because God is love and He can walk us through anything that we face! The illnesses and disabilities we have, if we let them, can be our best teachers for ourselves and others. Trials are often “humbling blocks" (or sometimes just really big rocks) which can allow God to teach us through our illness, disability, or whatever it may be. Claire: I used to believe in "love at first sight" until I was diagnosed with Lyme. I then learned that the men who claimed to love me at first sight were really just sweet-talking their way into what they wanted. One does not "fall in love." One GROWS in love. I second everything Zach just said! I'd just like to add that one more thing that makes us different is that we often simply just don't feel well. And so our time is spent doing low-key things to help others, or grow our friendship. I feel like a lot of young people get bored of their "sick friend." Zach and I don't, because we get it. We don't measure one another's value in how many "cool" and "fun" thing we can go out and do. We measure it by what's in each other hearts. How Do You Support Each Other?Claire: I'd like to answer this question by sharing a story about Zach. It's not news to anyone in the chronic illness community that Lyme Disease can sometimes be intense. I have suffered pain so server that it has brought me to the floor in screams and seizures. There was one particular time when Zach just happened to be there (and many similar times after that) when I was in this form of pain. I just have to say that I have never in my life met a person other than my parents who has been willing to sit with me and be there for me multiple times when I'm in that state of intense and unbearable pain. That day, Zach jumped right in and did everything he could from holding my hand and reminding me to breathe, to filling up my hot water bottle and helping my dad make dinner that night so we would all get fed. Zach doesn't get paid to do stuff like that. It's not part of his job. Those things are acts of love that Zach chooses to do on his own time, by his own free will and choice. And that's love. The truth is that Zach makes space for my pain. We have a wide variety of pain and sorrow, joy and laughter in our friendship. No, our friendship isn't perfect. Yes we sometimes disagree and argue. In fact, there was a time that we did that more often than not. The different is that Zach stays, works things out, and is constantly trying to better himself so that we can improve and strengthen each other. We support each other best when we are individually striving to be our best. We say we're sorry. We forgive. We love. We encourage. And sometimes we give each other a dose of tough love when the other needs to hear it. We pray for each other. We have each others backs. In all reality, we seldom ask each other: "What can I do for you?" We simply strive to see a need and fill it. Zach: Claire is a huge support for me in my life whether she realizes it or not. She is such a strong woman and makes room to mourn with me when I mourn and to be happy with me when I am happy. She makes room for my emotions. She celebrates the smallest of successes and she knows how to make me laugh! I know that is small, but when one is sad, the smallest smile is ALWAYS the brightest. As I realized very recently, she is also the kindest woman that I know. You see, the world thinks that being “kind” is just sugar coating and making everything nice and sweet. Which just isn't true, and sometimes we need a real friend to show us the reality of the “real” in life. She does that when I need it. She also pushes me to do the things which even I know will help me to progress and is a huge support even when she doesn't feel well. The biggest way that Claire supports me is through kindness, love, grace and compassion. What challenges arise and how do your resolve them? How do you get through the hard times?Zach: This is a very good question, because everyone will have challenges! Some of the biggest challenges for me and Claire I think are that we both have neurological/physical issues because neurological or nerves manifest physically. There are some days when our nerves are on fire!! And unfortunately most of the days are on the same day! The challenges faced are many different ones such as anger or “grumpy explosions,” as we have come to call them, and the biggest way we have better learned to resolve them is through kindness. Kindness is growing in love, compassion, and grace. It is understanding their situation or their feelings and putting that above your own. Sometimes, we resolve hard things very slow, and sometimes we resolve them separately. For the most part we are there for each other to help each other through the hard times. A huge way that I get through hard times is gratitude. Gratitude towards God and even those around you is the best way to get through a hard time. Sometimes it's just holding the persons hand and giving a shoulder to cry on. More often than not through all the “grumpy explosions” and outbursts, prayer is how we get through it. Prayer, faith, increased love for each other and looking for the good in life. Claire and I sometimes throughout the day will ask the other what are three happy things or what has been the best part of our day so far. This is a good exercise because sometimes we just need to stop, stand still, and focus on God and the good that is around us! What is one piece of advice you would give to someone who faces chronic illness/disability about making/keeping friends?Zach: The best piece of advice I can give is this: God is key! If we follow God, learn of Him, and build our personal relationship with Him, our relationship with anyone who does the same will grow immensely as well. I have learned that love really does triumph all and if we allow LOVE to take over rather than what we think should take over (anger, bitterness, hard feelings, fear or whatever it may be), then we can help our relationships in life to grow much more! ("God gives us weakness that they may become strengths.") With that, I will also add this: Forgiveness is also an essential part of any relationship because we all make mistakes. All of us. And no matter how close of friends we are, we will make mistakes, misspeak, or say something we don't mean. And it can be hard to let go and to forgive, but the more we do that and allow room to see the other person for their good qualities, the stronger the relationship will grow and the small things won't matter as much because it will become easier to forgive and see the good in each other. Claire:
I second all of what Zach just said! I'd also like to add this: Don't chase your friends. I spent so much time the first three years of Lyme playing the game of "chase" with my friends, siblings, and other relationships. I felt like because I have Lyme I had to prove to those people that I was worth spending time with. I had to prove to them that I had something to offer. The truth of the matter is that if you have to prove to someone that you're worth being in their life, than they are not worth being in your life. You are worthy of love and care even with an illness. I never had to chase Zach. We became friends because we both showed care towards one another, and that care grows everyday. That's friendship. That's love. If you're having a hard time making or keeping friends, wait patiently on the Lord. I am sure that He is preparing people for you that will be your people and will love you no matter your illness or disability.
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Before Lyme Disease, I thought I knew what love was. I thought that partying with my best friends on the weekends was love. I considered pooling your money on a Friday night for pizza, Mt. Dew, and a bag of Hershey's kisses to be love. I assumed that a friend taking me to lunch was love. I accepted endless teasing and poking fun at each other as love. I regarded a goodnight kiss to be love. I believed that the absence of criticism and the acceptance of my mistakes was love. I figured love was when someone knew you from the inside out, or at least you think they do. Then I got sick... Long term sick. The kind of sick that tortures you simply by removing your quality of life and peeling away the experiences that you used to think are what made life worth living. And surprisingly, I found that as your quality of life walks away from you, so do your friends, family, and neighbors as well. I've heard many people say that you don't know what love is until you've been married for an extended amount of time. I actually believe that you don't know what love is until you suffer, or someone you love suffers and you choose to stay. It's not often thought about enough. What would you do if someone in your life fell ill? Or became paralyzed? Or suffered a trauma? I mean, who wants to think about the worst that could happen? (Nor do I recommend falling into my friendly addiction of always "assuming that worst.") The answer to that question from the average person is commonly "I just don't know." And I suppose you can't truly KNOW until it happens... or can you? I was diagnosed with a debilitating illness five years ago after I had watched my mother suffer from the same illness two years prior. Naturally, my knee jerk expectation from the members of my church and community was that the people in my church congregation (that I had heard talk of service and selflessness) would be darkening my door to offer listening ears, hands to hold, kind remarks, and spiritual refreshment. I had spent years hearing about how that's what we do for those who are suffering, so naturally, I thought all that talk was real. And it wasn't. Now, don't get me wrong; this isn't to say that there are not wonderful Christians or people who do these things. This also isn't to say that I doubt the goodness of God, His love, or the truths that are taught in my church that I know in my heart are true. My effort to point this out is, simply put, to encourage all (whether you belong to my church or not) to try a little harder to be a little better. My dilemma and the dilemma of MANY of the chronically ill is this... Good, well-intentioned neighbors, church members, friends, and family are prepared for difficult trials that are short-lived. At the beginning of every difficult road people bring meals, and drop off brownies at the front door; but as time passes for the chronically ill, the meals turn into cravings for someone to talk to and offer comfort, and the brownie principle is quickly converted to sentences like:
And sometimes the obvious rejections of your illness comes in the form of a blank stare and an obvious discomfort as you sit across from someone trying to explain your illness that they are completely dissonant about. But the problem with all of these responses from compassionless and unfeeling people is that it breaks down the chronically ill. Negligent and thoughtless words can shatter a soul. Lazy comments can cause a loss of hope. And shifting discomfort because sick people are "uncomfortable" makes us feel like a disease, not a person. And the worst of this reality is that eventually, all these hard knocks from people fade into lack of human interaction altogether; because nobody knows what to do for the seemingly never-ending "needy person." We are not just bodies that lay in our beds. We are not lazy. We are not just looking for attention. We're not "the needy" that can be meagerly paid attention to in order to check off the "good Christian" checkbox every week. We are PEOPLE. And every living person that I've ever known has a basic human need for LOVE. Christ never taught survival of the fittest. (The sick are meant to die where the healthy thrive and dominate.) Christ taught that "if ye have done it unto the LEAST of these, ye have done it unto me." -Matthew 25:40 I can guarantee you that if you spent your time with "the least of these," you would learn things that would change your life. We live in a world that is virally shedding the idea that if someone is sick, the BEST call to action is to stay away from them as far as you can. Not only is this completely against Christ's teachings, but it naturally shatters the human heart and allows cold blood to run through the veins of many people who are DESPERATE for someone to instill love, hope, or peace in them. Lyme disease taught me something different than this world philosophy about people and love. And despite the cries for distance and shallow forms of "love," I would highly encourage you to apply the healing balm of FAITH combined with ACTION towards "the needy people" that you know. I now know that LOVE is COMPASSION.
I know that LOVE is a listening ear, anxiously engaged to help in any way they can. I know now that LOVE is patience, long-suffering, and choosing to STAY in someone's life even if they suffer long-term. I know that LOVE has little do with parties and social cliques, and more to do with simple moments and acts of service. I know that LOVE is peeling the one you love off the floor after they've passed out. And LOVE is washing their hair because they can't wash it themselves. LOVE is teaching one another things that help each other to be better. LOVE is TIME. MAKING TIME to BE WITH and EMOTIONALLY STRENGTHEN each other. LOVE is progressing spiritually and growing TOGETHER. Love is much more than the messages that are screaming at us on social media and the news. The kind of love that we all CRAVE, is the kind of love that very few understand until deep tormenting suffering takes place. In all honesty, gifting someone with an act of TRUE love is HARD. It takes TIME out of your busy life and schedule, and it usually takes thought and preparation beforehand. It's not easy to truly offer the gift of love to someone who is different or suffering. But at the end of the day, true love wins and is the real answer to deep, lasting healing. I recently received a comment on one of my social media posts in response to sharing some of my life on the farm. "Farm life sounds magical!" I chuckled to myself at that comment because my mind was automatically drawn to the not-so-magical aspects of farming. I'd hardly refer to mucking stalls, chasing goats that got out, waking up early to feed, and working with stubborn horses every day "magical." But it also left me in a reflective state of all of the joy that has come to me from living on a farm. I have experienced greetings from the sunrise that feel crisp clean. I've absorbed golden summer evenings when the whole farm seems to glow. I've awakened to winter mornings where the whole world is blanketed in white and icy glitter fills the air and space. I've spent rainy afternoons on my knees in manure aiding in a goat giving birth to a precious new-born, praying that they both might live despite the difficulty. I've cried along the riverbank in response to feeling God's deep love for me after a long week. I've witnessed miracles as I've watched the garden grow, and I've felt a connection with living creatures as I've trained and interacted with animals of all kinds. I suppose with all those things in mind, farm life can at times be quite magical. It never ceases to amaze me the miracles that I witness every day on the farm. One such miracle occurred a few months ago when I was feeling discouraged and frankly exhausted with the daily battle of fighting illness and attempting to live as normally as possible. I was standing inside one of our large greenhouses one evening, taking note of all the little plants that were beginning to grow when I noticed a small butterfly fluttering its wings rapidly along the edge of the plastic covering the greenhouse. (For those of you who are unfamiliar with greenhouses; a greenhouse is usually a large half-cylindrical shape with one door on either end of the structure. Greenhouses are used to keep heat in so one can lengthen their growing season and begin planting even when it's still cold.) I noticed this beautiful butterfly fluttering its wings and mentioned it to my friend that works for us. He replied by telling me it had been there all day and probably wasn't going to get out. Now, as someone who's heartstrings are easily pulled, for some reason my care for that butterfly increased and I took to the notion that I was going to get it out so it could live. I'd caught lots of butterflies in my backyard when I was a little girl so how hard could it be? My first thought was to cup my hands over it, catch it, and let it go as soon as I reached the door. Butterflies are less that submissive though, and although my attempt was sincere, it failed to succeed. So I stood there, and I eyed it while silently coaxing it to calm down. After a while, it landed gently on one of the wood beams laid across the middle of the greenhouse. These beams are a little higher than waist high for me, and it wasn't too difficult to reach at the time. I somehow received the thought to just hold out my finger to it, and to my surprise as I did so the little butterfly proceeded to climb onto my finger. I didn't even know that butterflies would do that with a person! While my heart and mind were screaming with excitement I calmly ventured away from the edge of our little plant house and stepped slowly towards the door. All the while, the butterfly sat content on my finger. The moment I reached the door I stretched forth my hand and the little butterfly flew away with a sense of freedom blowing through its wings and gratitude soaring behind it. I learned a lot that day about living creatures and how I truly believe that we can communicate with them in one form or another. It's almost like that butterfly could feel my intention that day and therefore trusted me to carry it to safety. I also acquired knowledge that day about how God often works with us. How often do we feel stuck, afraid, and panicked about life circumstances or experiences that are less than pleasant? And how often does God put forth His hand and pull us out of a scary and unknown place? I often wonder why I felt the need to help something that was probably really insignificant in the whole scheme of things. It's just a little butterfly? Why would it matter to me? Similarly, all of us can often feel like we are small and insignificant in the sight of God. I would like to assure you that you are never insignificant in the sight of our Father. I cared about that butterfly. And similarly, He cares about you. He loves each and every one of us individually. Even if we often feel like an insignificant bug, to Him we are not. Each one of us has divine potential that is worth giving time and love too. It would do us well to remember that. I often see myself in the place of that little butterfly. When I'm in the middle of pain from chronic illness or emotional turmoil, I panic with the realization that I "can't get out." That is, I can't get out by myself. I've often found that in those moments if I take time to be still, listen for the guidance of the Holy Ghost, and trust God's outstretched hand, He will very likely carry me to safety.
You see, God wants us to feel free, happy, and at peace. But life situations and the state of the world often discourage us from the good and the beautiful things that life is all about. So today, I'd encourage you to be still. Within all of the mess, and the chaos; and in the middle of all the pain and heartache that life has to offer, choosing to be still and take His outstretched hand is the tangible way to breathe in and absorb the good. The reality of life is that no matter how bad it is, no matter what you've done, no matter who you are or where you've been, no matter how broken you feel, "His hand is outstretched still." (Isaiah 9:21) This means that we can take His hand on a daily basis by aligning our lives with Him. This is done through mighty prayer, feasting upon the word of God, repenting every day, and striving to be more like him in word and deed little by little until we have come to a perfect knowledge of His goodness, mercy, and Being. As we walk this journey of repentance, mercy, forgiveness, heartache, and healing, we can know with assurity that HIS HAND IS ALWAYS STRETCHED OUT to help us through. As we rely on that hand, we can quite literally be carried throughout hardships and turmoils just as I carried that little butterfly to safety. Know and trust God's intentions. He intends to love us and bring to pass our immortality and eternal life. There is no greater or hope-filled intention than that. Take his outstretched hand. Know you are loved. And at the end of every discouraging moment, day, week, month, or year, remember that HIS HAND IS STRETCHED OUT STILL. I grew up on Hallmark movies. We all the type... Those movies that always begin with a single, independent, seemingly flawless woman with some high-end job in the city, or some cozy gift shop or bakery in a small town. And after a short intro of this stunningly beautiful girl, we're then introduced to Mr. charming, handsome, CEO, or buff small-town handyman who only wears plaid and manages three small businesses of his own. Along the way Mr. Charming meets Ms. Independent and in less than a day this unlikely couple can manage to save a town... or their small business... or Christmas; all while simultaneously falling in love, finding some reason why they'll never work out, separating for a few minutes, and then later (in the same day I might add) manage to resolve everything. Furthermore, we all know that every Hallmark movie ends with the world's most romantic kiss. And at the end of every Hallmark movie, we all assume the success of that perfect couple. I suppose that somewhere in my adolescent heart I believed that such perfection could exist. As I grew older I subconsciously held my expectations high and my hopes even higher that someday my Hallmark life story would become a reality. Let's just say I put the word "hopeless" in the term "hopeless romantic." I aimed high and hard for that reality. My perfect reality. My perfect lie. I'm sure you can imagine my shock when life didn't turn out the way I thought it would. Now, don't get me wrong; for I do not solely blame Hallmark movies for cultivating my perfect lie. I have found society, social media, social norms, and the status quo nurturing this perfect lie more often than not. I've watched young people my age post fundamentally every Olympic moment they experience in their short lives to their various social media accounts; leaving others relentlessly comparing their personal worsts to everyone else's public bests. I've observed pictures of endless glamorous and fun first dates. I've scrolled through perfectly edited engagement pictures in perfectly white fields or stunningly flawless mountain ranges. I've clicked on flashy engagement rings and completely enchanting wedding videos. I've liked and commented on many college degrees, job promotions, immaculate maternity photo-shoots, and perfectly clean pressed children. I've seen it all and aimed for it all, only to find that it is not all real. The problem with this subconscious facade is that it manifested in my very conscious life. I spent my days making never-ending lists of qualities in a "perfect man", only to find that there isn't a man that will check everything off on my list, and the most important things in a man weren't even on that list! I went to college because that's what you're supposed to do when you're young and fresh out of high school, only to find that college wasn't for me and that didn't in any way make me a failure. I've been obsessed with lists, schedules, planning, and my idea of perfect only to find that sometimes the lists and the schedules are significantly less important than God's timing, and that life is what happens AFTER you make plans! My reality was that I flirted with perfection because I thought it looked pretty, and the ugly in life scared me. I learned very quickly that the easiest way to overcome your fear of the ugly is to face the ugly head on and trust that God will lead you through the painfully imperfect moments in life. I found myself sitting in a dentist chair the other day conversing with the dental assistant who was cleaning my teeth. She asked me a few things about my life in which I shared with her about my blog, the gift shop I'm opening, etc. I mentioned a few small things about my life that I currently feel good about to which she replied: "Wow! It's like your life came straight out of a Hallmark movie! You inspire me!" To be honest, I'm still minorly laughing at that statement because oftentimes there are a lot of things that go unseen in other people's lives. It's natural to miss the sweat and tears that go into starting a business. Many people do not comprehend the long nights and overly stressful days that accompany earning a college degree. There's a lot of hard work and effort that is often overlooked among young people who can only see the outward "perfect relationship." Most people don't see that I have a debilitating chronic illness that adds extra weight and struggle to my daily life. Most people don't witness that agony of betrayal or abuse. The agonizing pain of many things that often feel like more than we can handle is often not talked about or recognized. This then leaves a lot of us wondering what we're doing wrong and why the long hard journey is something that must be borne alone. And then for those who are at high peaks in their lives it leaves them blind to the suffering around them and unknowing how to help, or unaware that it's even necessary for them to help at all! My life is far from perfect and that's okay! I've lived my fleeting moments of perfection. I've been the young girl at college with the world at her fingertips. I've fallen in love at Christmas and have pranced around with a flashy diamond ring. I've had perfect mistletoe kisses and perfect family photos. I've picked out the perfect wedding dress and posted perfect engagement photos to my social media. But there are shadows in every picture and wounds that go unseen. I also went home from college due to chronic Lyme disease and have spent years suffering and praying for relief and healing. I've passed through "a boyfriend for Christmas" only to be met with a breakup in June. That perfect mistletoe kiss only lasted for a second, and that flashy engagement ring meant nothing when glaring straight into the face of dishonesty and betrayal. Those perfect engagement pictures never lead to a wedding, and those family photos were originally meant to be wedding photos and are missing a few members of my family. And all of these imperfect things were things that were and are out of my control simply because they are a result of mortality. So, life is far from perfect... where's the hope in knowing this?
The hope is in knowing that the value of your life is not calculated by the sum of your perfect moments or the moments that everyone sees on social media. Life is not about the flawless moments that take your breathe away. Sometimes it's about the moments where your heart feels like it can no longer beat because your grief is too great to bear. Occasionally it's about sudden rainbows in the sky or dancing in the rain. More often then not it's about the moments in tears on the bathroom floor because we've all be there at one point or another. Sometimes it's about laughing so hard your stomach hurts. Often it's about embracing through the hard and wiping tears through the sorrow. It's about long nights and headaches. Intermittently it's about the first good night's sleep you've had in forever. Frequently it's about worrying and praying for a good outcome. Sometimes it's about problem-solving, and hand-holding, and enduring, and pouring your heart out to God in prayer. You see... life is the sum of all human experience because without the pain, sorrow, and imperfection, we would have virtually no recollection or appreciation for the joy, love, and beauty that comes in life. The most beautiful moments in life, are the moments that are borne out of great suffering. They come in the form of sudden beautiful vistas, sudden miracles, and moments of peace, hope, and unexpected smiles. Without opening up about the ugly imperfect moments of life, there are no hands to hold when you are called to pass through your life's ugly. So instead of hiding in secret, may we all be safe spaces for people to share their imperfection. Because becoming perfected for the eternities is all about striving to overcome the imperfect in mortality, and thanking God for the beautiful journey that life is. "Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. Most putts don’t drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. Life is like an old-time rail journey–delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride." (President Gordon B. Hinckley, Ensign, Nov. 1984:86 ) We have Christ to heal us from the imperfect of mortality. And we have each other to aid in the healing process if we so choose to lift each other in love and support. May we all share our imperfect. Because at the end of the day... all of the outward perfection is just a lie anyway. I once used to be a young girl that found every detail in life to be absolutely magical. I used to record every moment that seemed completely enchanting on little strips of paper, and I'd fold them up and put them in a small jar that I kept on my dresser. And as I now look back on those moments that I never would have recalled otherwise, I'm reminded that every one of those moments was perfectly ordinary, but my mind recorded them as memories that were special. I've jumped in huge piles of golden leaves whose crunch sounded like a symphony to my adolescent ears. I've smelled fresh baked cookies only to run into the kitchen carefree and joy-filled. I've balanced on sidewalk curbs and rolled down hills with the only side effect being pure laughter. I've watched clouds form shapes in the sky almost like magic, and I've walked barefoot in the grass without a worry in the world. I've taken long walks with people who make me wish that the path we were on wouldn't end. I've watched sunsets and prayed in small groves of trees. I've felt my heart skip beats because I thought I was in love. I've waded in streams knowing without a doubt that my feet would leave footprints in every place I've tread, and known later that footsteps and hand-prints can remain in hearts as well. And now... I grasp these beautiful moments tight because throughout the change and pain in life I find it significantly more difficult to experience these things. Or perhaps the difficulty is less from the lack of opportunities, and more from the lack of my ability to see artistry and charm because life can often be coated in tragedy, heartbreak, and pain.
So how does one compile all of the magic and the pain? How does one process the Olympic moments with the pitfalls and darkness? Perhaps the beauty of life is that we are not required to live it all at once, and we are not required to live it all by ourselves.
So, for now, I'm putting one foot in front of the other and leaning for dear life against the One who has experienced this all before. For now, I'm praying for eyes to see the magnificence that is so graciously placed before me, and I'm praying for fortitude in every ounce of pain and suffering that I may experience. And most of all... I'm praying for all of the cuts and scars to be healed because carrying this all on my own has proved to be soul-destroying. And then I seek for extra faith and practice deep trust. Because my God and my Savior have never let me down, left my side, or broke my heart, so why would I doubt for a second His infinite ability to heal my body, my heart, and my soul? For as I practice and reach for daily faith I'm reminded that God is writing an unforgettable and breathtaking story for me, and He's simultaneously preparing me for glory and joy that I can't comprehend in this life. So may we all remember the enchanting moments that are perfectly ordinary. And may we all learn from life's agonies that prepare us for life's greatest joys. For no being can live in a state of endless bliss without missing some greater exquisiteness, and it's very possible to be in the midst of suffering while simultaneously witnessing miracles. There is room for all of it in life. And we must remember that there is a purpose for it all in life. As we do that, we'll walk paths that will bring us to our greatest peace and joy. And that's worth living for. 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! I always find it minorly amusing when people express to me how happy they are for me that "all my dreams are coming true." I must have developed the art of appearing to be successful on social media the past few years because the truth is that I often find myself on my bedroom floor in tears because my life seems so drastically different than I imagined it to be in my younger years. Dreams are funny things. Funny in that when I was younger I often thought I could make my dreams come true by wishing on a star, dropping a coin into a quaint little fountain, or blowing out birthday candles. The unlikelihood of dreams coming from those simple acts of belief are slim to none, and when I was diagnosed with Lyme disease I learned that hard lesson fairly quick. Through the Lyme battle, I've been blessed to learn a few things that have shaped me into a completely different person. This odd transformation hit me not too long ago when I realized that I often don't recognize myself when I look in the mirror anymore. This fighter that was stripped of all of her dreams was once a young girl with her head in the clouds. And it turns out that this dreadful disease has compelled me to see life in a whole new way; a way that I never before would have thought possible. I've rolled this one over in my head multiple times in an attempt to discover whether or not that fact is a blessing or a curse. It has been five years since I have felt like I have done anything worthwhile, and five years since I received my diagnosis and returned home from my first semester of college. I remember leaving before the semester ended, and feeling like a complete failure because my body could not physically handle being in college for one minute longer. Since then I have spent lots of time doing things that always seemed useless and often ended in failure. For the first two years, I watched seasons of my favorite shows dozens of times over while I often felt like I was drowning in supplements and protocols, and yet saw no results as the pain relentlessly persisted. I went to three different colleges (and dropped all of them.) I picked up every hobby I could find and quit many of them after I realized that I couldn't keep my brain fog away enough to even finish what I started. I couldn't hold a job due to Lyme crippling my abilities. I planned a wedding; only to call it off and find myself right back where I started (single and still sick). And in my head, all of these failures made up the sum of me as I continuously was forced to fight Lyme every step of the way. But I did something recently that made me realize that a person is not the sum of their failures. It is often when you stand back and look at your life as a whole that you realize that most of those seemingly big failures were stepping stones to successes, and Olympic moments weren't meant to occur every day. I recently had the opportunity to participate in a vendor event where I was able to sell laser engraved products that I've been working hard to design and produce. Learning something new is always scary and can often seem like a large task when you begin to glare it in the face. I had many a moment where I was ready to give up. Moments when I butchered an entire basket of products while I was learning to use the laser (to which I now call the basket of misfit items!), moments when the wind and rain would destroy my entire display after I had just barely set it all up, and moments when I would spend the morning in discomfort and pain from Lyme, only to get up and buckle down for the busy evening and rush of busy customers. But despite it all, I persisted and pushed myself harder than my Lyme disease has ever allowed me to before. Many may not realize this, but this vendor event was a huge victory in the life of Lymie like myself. I spent eight days on my feet and overworking my body in ways I haven't done in years. I spent eight days around huge crowds while my Lyme riddled nerves burned with anxiety. I spend eight days surrounded by food vendors that were a constant reminder to me that I don't eat what "normal" people eat because I'm sick. And I spent eight days smiling and rarely ever mentioning my illness because every time I mention Lyme to the average person, it is rarely graciously received. My overall response to the crazy week I just lived is pure victory. Victory that I set a goal, saw it through to the end, and it was a success. Victory that people liked and bought a product that I made and that I just had a whole new start to a business that I'm hoping will grow and be a success. And victory in that I was able to interact with hundreds of random people and my nervous system was strong enough to hold its ground and not put me in a panic. Although the experience was far from perfect, and there were days that I fought through pain and Lyme symptoms, I feel like I just broke through a massive wall in my Lyme journey. And that wall was the big fat lie that Lyme disease makes me a failure. Lyme disease in no way made this event easy as I found myself fighting symptoms all along the way (and now paying for the overworking of my body), but it made it worth it because that wall in now broken and never again will stand tall. The fact of the matter is that I learned some things through this experience, and they're things I'll hold with me for life. The first lesson being that people with chronic illness and disability can still do wonderful and amazing things. The fact that they fight through debilitating life challenges makes them all the more strong for being able to do all of the great things that they accomplish. A great victory for someone who is sick may seem minuscule to the average person, but when a child is learning how to walk we never complain and tell them how they should be talking by now. So when my biggest victory was managing the pain just enough that I could manage to take a shower by myself again, that was something to celebrate. And now my biggest victory is starting a small business that may go absolutely nowhere, but that isn't going to stop me from trying. The second lesson learned came to me the last day of the event when I thought to myself how I wish I could go back to that sixteen-year-old girl who had dreams of being a vocal performance major, opening her own vocal studio, getting married and raising a family. I wish I could go back to that girl and tell her that all of those dreams were going to be utterly smashed to pieces by a disease that can manage to strip you of everything. But I also wish that I could go back and tell that girl that through all of the rubble and scattered pieces of her broken dreams, she would find beauty, peace, and great joy in her renewed view of life and the endless possibilities that it holds. Life is not easy. And it isn't supposed to be. For if life were consistently easy, we would miss out on some of our greatest victories. My third and perhaps most important lesson I have learned from this experience is that it is the little things in life that bring us the greatest joy. Little things like laughing so hard your stomach hurts, and crying tears of joy for the first time in forever. Things like stopping to smell the flowers or walking barefoot in the grass. I often missed the little things in life that give depth and meaning, and I often gave too much of my attention to things in life that are artificial and temporary. For I have found that the only thing that can strip a person of their artificiality is great trial and affliction that burns the artificiality out of us and compels us to look a little deeper and take note of the little things that the average person misses. And although I sometimes question that deep sensitivity I've developed in the past five years, I am also deeply thankful for it, for I have come to see the world in a completely different manner than what I saw it before. The reality of life is that the cure for broken dreams is to dream again and to dream deeper. And as you walk the painful path that's lined with seemingly shattered dreams, you will find new dreams among the rubble and the ashes, and I guarantee you that you may grasp some of your dreams past as well. Whatever you do, just don't step off the path no matter how painful it may be. Because walking the path of your broken dreams can lead to the most beautiful of destinations.
I frequently travel through my life with a sense of a double identity as our society loudly screams frivolous ideas of success and popularity that seem to be difficult to ignore. And as I attempt to "fit in" with my peers, I always find myself feeling slightly fake and two-faced. As a woman living in a world brimming with photo-shop, snap-chat filters, and unrealistic glimpses into other people's lives via social media, it's easy to blindly chase after the false belief that in order for me to be a thriving influence in society I must be living up to society's standard: I must be going to school full time, holding a job, eating the best tasting food, traveling to the most exotic places, fulfilling all my callings in the church, and I must be stunningly beautiful every day. I must never have problems... and if I do I must keep my mouth shut in order to avoid causing anyone discomfort. If I experience emotional pain, I must quickly throw it under the rug and pretend it doesn't exist. I must smile... but not too wide and not too frequently. I must be happy... but not too emotional or enthusiastic. I must be tired... but simultaneously drill myself to accomplish all the to-do lists, schedules, and appointments. And while I'm juggling all that... I must also be having the most fun and posting it all to Instagram and Facebook so that everyone else can feel bad about how they're not having enough fun. Thank you social media for this unrealistic and impossible view of reality. I've tried to be that girl. That girl that has perfection in the bag. That girl that appears to have vitality and richness overflowing in her life. That girl that doesn't talk about her inward struggles in fear that she'll make other people uncomfortable or that she'll give the wrong image or idea. But that girl is fake. That girl isn't real. That girl is living a double life and because I've always tried to be that girl, it makes it easy for my peers, associates, and family to assume that I'm not really sick. "You don't look sick." "She must be faking it." "You're a beautiful girl that probably just feels like you're not getting enough attention." "You must thrive off of attention." Some of the comments that all chronic illness warriors hear on a regular basis cut us deep because we're simply trying to survive in our own skin to the best of our ability. What's worse is the words that go unsaid. What's worse is the gaping mouths and blank stares we receive that translates to the disbelief that any person actually suffers on that kind of level. What's worse is the attempt of someone apologizing and stating how hard that must be because they don't know what else to say. The silence is just as painful as harsh words simply because it traps us in the corner of disbelief where we constantly feel the need to prove that we're sick. So I'll be the first to admit it... You're right... I'm faking it. I'm faking the smile on my face when I'm trying so desperately to hold back tears. I'm faking that I'm feeling okay when I'm usually riddled with muscle pain, nerve pain, or severe anxiety. I'm faking that I'm living life pain-free when there are so many times that I feel like I'm suffocating under my own skin. I'm faking my sanity when I feel like there are bugs crawling under my skin. I'm faking that I'm flying when at times I feel so utterly close to drowning beneath the pressure of it all. I'm faking that my heart is whole and complete, when really it feels exhausted, broken, and bleeding. When these things that I'm faking are expressed out loud, I simply feel inadequate. I feel like I lack the ability to ever be "good enough." I feel like it's my fault and if I just tried a little harder.... maybe my pain would subside. I feel ashamed of my own existence, and I often wonder why at times it feels like the world keeps turning while my time stops and I'm trapped in one place until my inward storm chooses to cease for a while. And as these feelings envelop me, the vicious cycle of feeling forced to "fake it" starts all over again.
We live in a society that believes that pain can be relieved with substances. We cope with alcohol, drugs, pills, porn, food, or anything we can do to numb our afflictions. But at some point, we have to realize that the SUBSTANCES DO NOT HEAL US. The substances numb us to the harsh reality. Instead of relying on substances, we can rely on God and on each other so we don't have to feel the desperate need to "fake it till' you make it."
LOVE is the key to healing. "For God so loved the world, that he gave his only begotten Son." (John 3:16) God loves us, so He gave us His son so that we don't have to suffer alone. Christ knows of our pains and our sorrows, and He loves us all the same. If we strive to be more like Him, we can act as a rock and relief for others who are suffering. We don't have to have all of the answers for the chronically ill. We don't have to take their physical pain away. But what we can do is seek to understand the depths that others and in, and then... we simply love them through it. Here's the joyful message of it all... Because I have a Savior who loves and sustains me... I can find pure joy through pain and illness, and I'm not faking it. Because I know that people are more important than substances, I can understand that after I walk through my own furnace of affliction I develop the ability to love others through their afflictions. I also understand that as I suffer I gain a greater capacity to later help others which in turn helps me. What I stop trying so hard to fake it, I can be true to myself in enduring pain and happiness. So the next time that you meet somebody, or the next time that you're talking to somebody... "treat them as if they are in serious trouble. And you will be right more than half of the time." (Henry B. Eyring) It would all do us well to bring our shallow existences to a halt. The next time that somebody says they are doing well and you sense that they are not, do not believe the words they speak. Believe the silent plea for help in their eyes. Believe their subtle look of discouragement and pure exhaustion. Believe that little voice in your head telling you that maybe this person needs help. Believe the inherent ability you have to love somebody through their pain. We all have that power. May we seek with pure diligence to know how to help ignite that power in ourselves and in others. For this post Chronically Beautiful teamed up with The Hello Lovely Project. The Hello Lovely Project exists to promote self worth in young girls and women illustrated through pictures and stories. In a day and age when women's contribution to the world is so often objectified and diminished, it's more important now more than ever that every woman recognizes her Divine worth. The heart of this project rests in the fact that women are so much more than what you see on the outside. Women are human beings that have hearts that pump blood and determination through our veins, lungs that breathe air and influence throughout our society, and minds that hold treasures of knowledge and wisdom that ought to be recognized. Every woman has Divine gifts and Divine worth that makes them absolutely amazing, and for some it's incredibly difficult to see the beauty and worth that lies within. For the Hello Lovely Project, we strive to let that truth penetrate the hearts and minds of women all over the world. Let's face it... the years that we all walk as a teenager are always the most difficult, and my road to discovering my individual worth began here. Bottom line: I hated the mirror and I never felt like I was ever enough. I spent countless amounts of time in Sunday school lessons and seminars about beauty and worth and yet I couldn't quite seem to visualize in my head how it all applied to me. I was told time after time by my peers how I wasn't smart enough or how I lacked in one thing or another. Due to physical disability, I wasn't as quick to think on my feet as some of my friends were, which lead me to believe that I was just plain stupid. Stupidity was also implied multiple times through that sarcastic comment that rolled off the lips of my peers on multiple occasions: "It's a good thing you're pretty because you don't have much else going for you." Those words cut deep as I let them penetrate my heart and allowed them to affect how I viewed myself and my worth. For these reasons, I rotted in the belief that if I could look "perfect" then maybe I might have something to offer in the world. At this time in my life, I spent a lot of time watching beauty "how-to's" on Youtube, and wondering why my hair never seemed as shiny, or my teeth as straight, or my lips as full, or my skin as clear as all the girls in the videos. How did they master this idea of "perfection" and yet no matter how hard I tried, I would never be enough. No amount of makeup or hairspray could help me reach the level of physical "perfection" that I could see in others. And yet I didn't pause a minute to strive for anything less than excellence in my appearance. As you can imagine, living in a way that makes everyone else happy and comfortable with you can be very exhausting, and I often wondered what it would be like if I ever resolved to show up to school as someone who was comfortable in my own skin (without all of the extra makeup and hair care). The truth was that I couldn't ever get myself to take that step due to fear of what others would think. I was often told by women that "beauty is pain" anyway, so I figured that it was normal to never find true comfort in my appearance. The truth was that I never was comfortable in my own skin. I didn't like my own face. And I didn't want to think about what I actually looked like because my looks were seemingly "all I had to offer." Let's fast forward to post-graduation and my first taste of young adulthood. How does one's self-worth play a part as a young woman attending college who had just been diagnosed with a debilitating disease? I was diagnosed with Lyme disease soon after I began college, and naturally, the obsession I had with looking perfect came to an end. I lost 15 pounds my first semester of college (keep in mind that I already only weighed 125 lbs and I'm 5'9" in height), and could often feel and see my spine, wrist and ankle bones protruding from under my skin. When I came home from college I found unnatural amounts of hair coming out in my brush and I remember standing in front of the mirror in tears as I'd pull the hair out of my brush to throw it away. I remember my face, neck, arms, and back very frequently being broken out in lesions and rashes that would itch and hurt to the point where I had a constant relentless urge to pick at my skin whenever I felt nervous or panicky. Naturally, the makeup, hairspray, and the need for "perfect" appearance quickly vanished. Suddenly my drive to stay alive became more important than my desire to look like society's ideal woman. Naturally, I felt horrible about myself day in and day out. I was useless. I had to stay in a bed and participate in laborious treatments that frequently made me feel worse. What could someone with Lyme disease ever have to offer in a world that pushes work, education, money, traveling, exercise, and looking amazing while doing it? Eventually, as I learned to find comfort in my own face and my own skin, I learned the answer to that question. I had to come to a place of acceptance in my life. Acceptance of who I am no matter where I happen to be or what I happen to look like in my life. A place where I learned that the worth of a woman has nothing to do with how she looks. The worth of a woman doesn't equate to how smart or stupid society tells her that she is. The worth of a woman isn't about what men or other women think of her. The worth of a woman isn't drawn based off of her abilities or her disabilities. The worth of a woman isn't determined by how perfect she can get herself and her life to look. I didn't realize when I was younger that my worth comes from my heart, not from my body. To say that one's worth comes from their physical appearance doesn't make sense simply because the heat of life being turned up doesn't equate to the worth of a soul being turned down. If my body determines my worth, then when my body breaks down from physical illness I don't have any worth! I know now that this perception of 'worth" just isn't true. I suppose it's true that "beauty is pain" not because of eyebrow plucking and long hours of makeup application, but because my illness does not make me "less beautiful." If anything it makes me more beautiful because of the extra strength and resilience that is accompanied with all the painful aspects of Lyme. I choose to not let Lyme define me, and even though it's incredilbly difficult... it doesn't determine who I am or my worth. Every single one of us is blessed with innate worth and ability when we are born, and that worth doesn't merely vanish when life gets hard, or when we feel inadequate in various aspects of our life. In God's eyes, every single one of us has an undeniable amount of worth. When I can see that my worth comes from God, then I can also see that my worth is enduring and eternal. The glorious message from that is that every single one of us has the power to take our worth in our own hands and create something beautiful with it. I never was stupid. I never was ugly. I never was useless. I simply perceived myself to be that way which held me back and made it so I was living way beneath my privileges. I've always been beautiful, smart, and capable. I've always had something to offer to the world. It is so with every woman if they so choose to discover and realize their internal worth. God loves His children. God loves His daughters. That doesn't change because of things that others say or expectations of society. My hope is that all women can come to an understanding of who they are and the innate beauty that is instilled in there own hearts and souls wherever they may be in their lives. *This post was inspired by #thehellolovelyproject. You can learn more about the incredible woman who started this project by visiting her "About Me" page here.
Do you want to get involved with this project? Here's what you can do!
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. |
Introducing:
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