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.
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.
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?
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.
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?
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.
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?
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.
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?
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.
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?
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.
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?
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.
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?
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?
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.
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.
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.
The Butterfly Analogy
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.
Treading Through Winter
There are times when winter is reminiscent of being swallowed by a deep black hole. And if we're not careful, we may forget the light that's right behind the cloud cover.
I hold deep antipathy for darkness, and I often look up at the sky in the wintertime wondering if the bleak gray of winter will come to an end. It's common to hear talk of "winter depression" or "seasonal depression," but I almost never hear talk of what it's really like, or what it even really is. I wish I could say that wintertime was merely a battle with sadness, but I've found it's often much deeper than that, and the PTSD that comes from long months of illness is as real as the PTSD that comes from fighting in a war. In all reality, this is a war for those of us who push through winter with chronic illness, one heavy step through deep snow at a time.
Last year at this time my family was walking right into "The Lyme Flare of 2019." I took up my bed in February of 2019 with pain so deep and penetrating that I couldn't lay on one side of my body for too long without having to sorely role over to another side to release any pressure that was weighing on my pained muscles. I had been in this place many times before, but this time was a complete recession from how I had slowly been improving throughout 2018. Like falling down the stairs or off of a tall cliff, I looked up at this beast referred to as a "Lyme flare" that I was somehow facing once again and felt completely destitute and defeated.
At the time I had been struggling with piercing feelings of insecurity, worthlessness, and the fear that I will never be enough. I had been striving so relentlessly hard to work through life on my own, that my mental health had completely receded. I prayed for relief from the monsters inside me and instead of relief I was left to cope with physical pain and my ability to do anything removed from my grasp. And it was in this time-frame that I resolved to surrender everything to God and hope that by some miracle I could be pulled out of this darkness that swallowed me while I lay helplessly in a bed or on a couch. The "winter depression," as one might call it, was so heavy that I often felt completely paralyzed. I remember at this time that every time I could manage to glance out of a window my eyes would be met with gray skies and cold frigid air.
What I didn't know at this time was that this wintry flare that left me feeling completely lost and pained, ended up being one of the greatest blessings of my life, and resulted in one of the greatest lessons of my life.
Up to this point in time, I was living subconsciously as if I have to do everything on my own for quite some time. I'd never done anything half baked, and I'd always found myself meeting my problems and pitfalls with ambition and hard work. Unfortunately, there are things in life that one cannot possibly do on their own, such as facing monstrosities like Lyme disease, betrayal, or abuse, and I often found myself passing blame to myself for the misfortunes that happen simply as a result of mortality. I blamed myself for my negative feelings, and I numbed myself to my heartaches and hurts as a way to somehow prove that I was strong and that I could heal and survive on my own.
If there was anything that "The Lyme Flare of 2019" taught me, it was that I simply could not do it on my own. I had been driven to a place where burning over my pains with work and busyness was no longer efficient because my body would not allow me to. And as one can imagine, I faced my pains with the quiet allowance of feeling. It was excruciating. But with that, I learned about grace.
It was as if God had answered my cries for relief by giving me permission to stay in bed and sleep for a month or two. I felt His love and support even when all I could do was rest. And surprisingly, life went on. He took care of what I couldn't and I felt great peace and comfort that this was a time of RECOVERY, STILLNESS, and HEALING.
You see, we are not expected to pass through toil and trial on our own. And in a world where I have heard the phrase "God doesn't give you more than you can handle" run freely from the mouths of those who have yet to taste bitter cups in this life, I commonly assumed that there was something wrong with me because THIS was more than I could handle.
Lyme is more than I can handle.
Betrayal trauma was more than I could handle.
Watching parts of my family fall apart because of this disease was more than I could handle.
Living day, after day, after day for years watching my mother in pain and suffering that is seemingly endless is more than I can handle.
And the heartache that comes from isolation and loneliness is MORE THAN I CAN HANDLE.
The truth is that there are many times in life that God will give us more than we can handle and that is simply because we were not meant to handle it by ourselves. We were given grace, tender mercies, each other, and a Savior who loves us tremendously. So as we pour out our aching souls to Him, He gives us grace for grace, and mercy for mercy. Who knew that lying in a bed in debilitating circumstances could teach me that I am enough, that I don't have to "handle" everything by myself, and that just because I can't handle something doesn't mean that He can't.
So now I face this winter with similar anxieties, pain, and emotions boiling to the surface. I still glance out the frosted over windows to see bleak skies and frigid air. I still often find myself in deep weariness of soul because there are some battles in life that do not merely end.
The increase of symptoms and the seasonal depression can still weight heavily on my body and heart, but this year I fight with a changed perspective. This year I fight with quietly loud faith knowing that I am not fighting alone and that I don't have to face the scary aspects of life on my own.
The winter will always pass through where I am. The skies will always gather clouds and the storms with often rage. The cold will often chill us to the bone, and sometimes coats and scarves won't always be enough to warm our troubled hearts. But one thing I can guarantee is that bright blue skies will always appear again. Light conquers cold and dark. And there is often something beautiful awaiting us in the middle of these merely bleak or utterly terrifying winters of our lives.
The trick is to remember in the middle of them that as we strive, we are enough, we're not alone, and sometimes you can even find some beauty within the storm. For I always thought that snowflakes could turn out to be quite beautiful anyway.
God's grace can and does sustain us, and I pray for that as we persist through another winter.
Breaking Through My "Perfect Lie"
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.
A Glance Into Life's Oppositions
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.
"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
Disabled Life, Abled Love
It's no secret that the community of people who suffer from chronic illness and disability is in an uproar due to the rash and erroneous statements made by Dr. Phil on Tuesday, March 12. In this episode, Dr. Phil claimed that "100 out of 100 relationships that involve care-giving fail. You can be a caregiver or a lover but you can't be both." I've never seen a more beautiful response than from the #100outof100 that's trending on Facebook and Instagram, and as a young, single, chronically ill woman myself, it may seem that I'm not qualified to have any opinion on this topic at all. But, I'd like to offer a fresh perspective to the community and to overall society. Everyone may be appalled by Dr. Phil's statement, but how often does society and communities all over the U.S. actually treat the chronically ill and disabled this way? Thank you, Dr. Phil, for saying out loud what most people think, but would never make audible. Your statement is currently bringing to light the attitudes of many and states that this is a social and cultural mindset that needs to change. Well, this is my perspective, and if you read all the way to the end, you'll find that I may be more qualified to discuss this topic than some might think.
My parents were married in the year 1980, and my mother was diagnosed with chronic Lyme disease in the year 2013. It took years for my mother to receive a diagnosis, which means that there were 33 years of unresolved health problems and 39 years total of disability and struggle.
On my parent's wedding day, my mother was eminently sick, and that was merely a taste of the next 39 years for them. I don't ever remember a time when my mother wasn't sick. My mother is the best mother I could have ever been sent to because despite chronic weakness, fatigue, and unexplained neurological symptoms, she successfully raised six kids in a happy and healthy home who are now thriving adults in society. It wasn't until I came along that symptoms became less tolerable and more abundant with time. As a teenager, I remember my mother often being bedridden throughout the winter months and hospitalized frequently. It didn't make it any easier that my parents had me, who seemed to always be sick with strange and unexplained symptoms, and the frequent doctors appointments for both of us almost never left us with any answers or hope to someday receive answers.
It wasn't until I was a junior in high school that my mom went down for the long run. Her pain levels were excruciating, she would often suffer from spontaneous seizures due to the high levels of physical pain, and she experienced pain so deep and severe that I often wondered what happened to my mom because she wasn't the same person when she was this ill. She was bedridden for years, she lost her ability to walk and was in a wheelchair for awhile, and again... there were no doctors that had any answers to give us other than that there is no illness with all of her symptoms.
Right when life reached it's peak of pain and discouragement, right when most people would leave and surrender to it all, right in the middle of no improvement, and right when a large majority of people would leave... my dad chose to stay. There wasn't a life to be had. There wasn't a possibility of going to work, or church, or anything else that an average man would do because when mom went down, my dad took his rightful position as husband AND full time caretaker. The position he promised he would take the day that he married her.
I've watched my dad care for and love my mother through this awful disease for years, and he isn't planning on stopping anytime soon. I've watched him feed her, push her wheelchair, and peel her off the floor after she's passed out or after a seizure. I've watched him drive when she lost her ability to. I've watched him take over the cooking and cleaning when she lost her strength to do it herself. I've watched him do what any real man would do when the love of his life is put in a situation like this. Because why would you trust a stranger that you pay for to take care of the person that you love and cherish more than anything in the entire world?
True love has absolutely nothing to do with physical ability or lack there of. True love has everything to do with two hearts and souls that would give and sacrifice ANYTHING for the well being of the other person. And if both people in the relationship have that mindset, then both people are thoroughly taken care of. My mother has always been a help-meet to my father. And when she was able, she was always by his side, helping and supporting him in all of his endeavors. My parents set out to be a team from the very beginning, so when they were brought to a point where they had to walk through the fire, they walked through it together without being burned alive.
Not only did my father have the task of taking care of a sick wife, but he also is frequently met with the task of taking care of a sick daughter as well. My small family of three pulls together in our house, and through sweat and tears, we take care of each other, no matter how difficult it gets. Often through the fire of chronic illness, I've so frequently been shut down by others, which is why it's crucial to have a family that is your full-time caretaker.
We live in a society where the breakdown of the family is dominating and the definition of love is becoming increasingly shallow. As a young single person, I watch many healthy young people searching for someone who can be their eternal companion, and basing their decision on how much fun they can have with a person, and how pretty looking they can appear to be together. Why would you need to take care of the person you love when you have doctors, therapists, physiologists, bishops, and pastors doing it for you? Wouldn't it be easier to hire somebody who is a qualified "expert" because they learned about it in a textbook once when they were in college?
The answer is no because true love has nothing to do with how good you can look on Facebook, and often the experiences that cultivate the greatest love are not shared on social media. Often the experiences that cultivate the most love are dark, scary, and require sacrifice. Cultivation of love is often brought on by those experiences that open your eyes to how much you would miss that person if you lost them.
I'll never forget the comments I've received from people towards the men I've dated about how wonderful a man he must be because he's willing to be with "someone like me." I often wonder if the person that told me that "it makes sense why no one would want to be with me" is right in some ways. And I often think of the many men that frustratingly have asked me what it would take to be with me because they don't think they could do it.
What all these people are forgetting is that love is patient and kind. Love is not skin deep but is something that penetrates into the heart and soul of two people who would give anything to be together. What happens when that "perfect" husband or wife becomes paraplegic, or chronically ill? Has our society come so far as to say they won't love another human soul unless there's a guarantee that everything will stay easy and comfortable all the time? Because if we've come that far, then society is seriously disintegrating before our eyes. No wonder there are so many incredible disabled women I know that feel like they're destined to be alone.
As a chronically ill single girl, I know my worth. I know my mind and heart have more to give than a lot of people who are physically able and strong! And I know that there are thousands and millions of chronically ill people out there who are worthy of love because the love that they have to give is the kind of love that lasts into the eternities.
When something is broken, you fix it. You don't throw it away. When you choose to love someone who is broken, the brokenness heals. Because doctors and "experts" cannot heal you. But love can. It is possible to love at maximum capacity while coping with disability and illness. May we all choose to see that in whomever it is that we come to love someday.
The Double Life I Hate Living
I sense extreme pressure that builds up in my chest and makes my nerves tingle from my heart all the way to the tips of my fingers. Pressure that makes me fear the future and gives me a severe distaste for my present. Pressure that brings tears to my eyes when I least expect it and leaves me looking at myself in the mirror wondering who that girl is.
I'm not completely sure where this pressure comes from, but I have a slight notion that it originates from past traumas. Memories of insufferable pain from Lyme disease for long nights. Recollection of people that I love making promises they never intended to keep. Thoughts of being hurt by the harsh words and actions of people who don't even seem to understand how much effect you can have on another's human heart. This odd awareness for past experiences flashes through my mind when I least expect it, and leaves me feeling like something inside me is crawling up my spine. I can't stand it, and for once I'd like to just be me and not have to worry about being crushed again by the insensitive human temperament that so many seem to possess.
I want my heart back, and I want to feel comfortable in my own skin again around other people.
When I'm occupying my own space, I get to experience a sense of acceptance of the girl that screams to be free. In my sanctuary, I have the privilege of being that girl that doesn't eat sugar and experiences a thrill from eating healthy food. I'm that girl that can sense things that others can't and is allowed to be highly sensitive to smells, tastes, sights, and the little beauties that are all around us, and it's not crazy, it's insightful. I'm that girl that sings her favorite song as she's walking down the street and wears maxi-dresses for no special occasion, just because she can. I'm the girl that jumps up and down when she gets excited over seemingly insignificant things, and I'm that girl that obsesses over to-do lists and loves schedules, but also loves feeling free as a bird! I'm the girl that never does anything half baked, and it doesn't matter if everyone else executes everything in their lives with half the effort, because she can be happy living in her full and vitalized life. I'm the girl that lavishes my entire heart in her endeavors and thoughtfully verifies that the beautiful living creatures that she comes in contact with can experience the intense Divine love that she can bestow.
I'm also that girl who can be smiling one minute with gratitude that she's not in pain and crying the next because coping with trauma from illness is SO HARD. I'm that girl that can laugh at the humor in life one second and be on her knees in prayer the next praying for release from severe anxiety and depression. I'm that girl that can be on my feet and doing yoga one day, and in bed with a heating pad hardly being able to move the next, because Lyme disease sometimes breaks you. But when I experience my whole being in a safe place for myself, I don't feel completely insane for the various and rapidly changing ups and downs. When I'm safe, I can accept that I'm just a girl with a chronic illness who is trying to learn how to heal to the best that she can and sometimes she's dissatisfactory and defective at it, other times she thrives, and that's okay!
In the presence of large groups of people, everything changes and I often find my indestructible and merciless brick walls building up around my heart as a protection against the naysayers. I often can feel the lock and key as I stuff my personality in a corner for the meantime. I often feel trapped to be like everyone else, and if a little part of me comes out it could be dangerous in the hands of people who disagree or misinterpret. I often find myself performing the act of the perfectly composed woman who wasn't just in excruciating pain the night before and can be wherever it is I need to be because I'm expected to be there, even if my body cries otherwise. Concealing my thoughts, holding my tongue, not venturing too close... Because if you unexpectedly get too close to someone who bites... you're left suffering on levels that they don't understand simply because they haven't experienced their severe adversity yet. Protecting myself is chaining, exhausting, and lonely. And for that reason, I choose my safe space as often as I can.
Everything changes in the presence of people who misunderstand and misinterpret. And the unfortunate truth is that so many people throw wrath and fear at others simply because they lack the ability to reach their hearts into someone else's. So many lack the ability to be raw and honest with themselves and others about their lives. We all struggle, and if the human struggle was a shared effort where we all sustained each other, there wouldn't be so many who feel the need to live a double life.
I often wonder what it would look like if it were possible to compile all the tears from human suffering into a box, how big that box would have to be. And if people had a chance to witness how large that box was, if it would soften their hearts in a way that made them slightly more sensitive to the people around them and slightly more aware of the hearts that are crying out for help. If we knew how deep other people's waters were, would we take extra time to stop and help them so that they don't drown? And if everyone stopped and helped the people in deep water, maybe all the water as a whole would be lessened to the point where we could all patiently wade through less troubled waters together. Maybe if we all decided to be a little more real, and a little more honest... then maybe those who suffer wouldn't feel the need to live a double life because then they would know that they weren't along and that there were strong hands waiting to lift their aching hearts.
God doesn't expect us to live out our lives in cold hard shells so as to not let other's notice our pains. God desires us to love and lift the hands that hang down. God wishes us to let love penetrate so deep that we can all feel His Divine love through each other. I hate the pressure I feel to live a double life as a chronic illness warrior (and I know I'm not the only one), and I've found that I'm more effective at bringing light into other's lives when I'm simply striving to be my best self. Maybe all of us could come to that realization in a way that could change the world.
It recently occurred to me that I've been fooling myself. I've faithfully proclaimed on social media year after year since I was diagnosed my deep hope that the next year will be easier, or that it will be better than the year before. I've hoped, and prayed, and fought my way into society's view of a "better" and "easier" life, only to find that this "easier" life that I'm seeking for doesn't exist. There's no such thing as "easy" in the vocabulary of a chronic illness fighter, and it turns out that the moment you think that the chronic illness battle has become "better" or "easier," something else painful and heartbreaking will come along that will try your resilience and test your nerves. And then after you've made it through that trauma, your illness will flare again. Due to this eternal pattern that keeps kicking me, I have finally reached the point in my life where I can say that I am no longer hoping, wishing, or praying for an easier year ahead!
Sounds like I've reached the point of intense embitterment, but I wouldn't exactly call it that. In fact, I've finally discovered that this statement that I'm making isn't a negative or chaining statement at all. In fact, admitting to it is probably one of the most freeing experiences I've ever had!
For as long as I can remember, my family's motto has always been "we do hard things." I was taught growing up that working hard and doing things that appeared to be difficult would bless my life and create a stronger person inside me. I was taught that striving to achieve things that were seemingly out of my reach was healthy and something that should be practiced on a regular basis. Back then it never occurred to me that there was something harder out there than Saturday morning chores, striving for a 4.0 GPA, and losing a best friend. Hard things came and went when I was young, but eventually, there will come a time in all of our lives when those hard things won't just leave. There will come a time when those hard things stick around, and you'll find yourself on your knees begging for relief more than once.
I've been in that place for years now, and I think I'm finally beginning to understand and live the truth that adversity and affliction has a divine purpose. Things may not get easier in the moment, but that's okay. Because God promises us better things through our suffering and God sustains us every step of the way. It's through the hard things that I've developed sensitivity to God's precious mentoring that He blesses my life with.
C.S. Lewis says that "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world." I think my world has been roused and it's been a loud and painful awakening, but completely worth it. Many of us have probably experienced that this year, and what a blessing to say that we've learned this lesson firsthand.
I'm not going to begin to pretend like I have life all figured out. In fact, I often find myself in prayer expressing how unsure I am about life. But there is one thing that I do know:
Sometimes life is absolutely awful. Sometimes it's blood, sweat, and tears to make it through the day. And sometimes it seems absolutely unbearable. Other times life is magical, joyous, romantic, and absolutely beautiful to the point where you can't seem to breathe in enough of the moment, and you wonder what you could have possibly done to be blessed with such a perfect moment in life. And other times life is somewhere in between... mundane and boring. And the reality is that in order to live life to the FULLEST, every single one of these experiences is absolutely necessary. Because without the pain we wouldn't appreciate the joy. And without the mundane, we wouldn't appreciate the magic. And the glorious truth is that we have a loving God who sustains us through it all. How loving and merciful He is to enable me to do the hard things, even if they seem to be never-ending.
So this year I'm not praying or hoping for things to be easier. I'm hoping and praying for the strength to endure the hard, the wisdom to appreciate the magic, the patience to remain hopeful through the mundane, and the courage to submit to God's will even if it's more difficult than past years. May we all have the ability to discover those places of balance and vitality in the year to come.