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.
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.
There is one truth that for the longest time I never believed for myself. But now I believe it, and I want everyone who suffers on levels such as this to know:
HEALING IS POSSIBLE. HEALING CAME FOR ME, AND IT WILL COME FOR YOU TO!
Healing is not something that occurs in one swift motion. Healing does not come in an instant, and healing isn't an easy process. Healing is a cleansing process. A cleansing process of one's mind, heart, and soul. Healing is a choice. We are NOT a result of what happens to us in our lives. We are a result of how we REACT to what happens to us. There are things that will come that are completely out of our control, but how we choose to react to those things will determine our destiny. If we choose wisely, we can experience healing along the road that at times will seem relentlessly long.
And here's the good news: WE ARE NOT ALONE ON OUR PATH TOWARDS HEALING! Isn't that a glorious message!? We have a loving and merciful God who is there for us every step of the way. We have a Savior who knows EXACTLY what we are going through because he suffered all of these pains we feel long before we felt them. And we have angels that we cannot see who are there to love and support us and they are fighting our battles with us. You see, we are never truly alone on our painful journeys. That was something I had to learn before I was able to get up, overcome the initial shock, and move forward in faith.
Healing doesn't come through choosing to be the victim in any certain circumstance, and for me I had to push past the agony that was taking place in my mind and heart, and make specific decisions and take action towards healing. Small choices I made back then made a massive impact on the state of my heart as time passed. These are action steps that every single one of us can make. And no, making these decisions doesn't make the heart-stopping pain hurt less, and it doesn't induce instant healing, but it teaches and heals one step, one second, one minute, and one day at a time.
These are the things I had to experience in order to reach healing:
1. I had to decide right away that I wasn't going to let this destroy me. Throughout the course of events I resolved to be strong even if I felt like the weakest person on the face of the earth. For so long I felt like a little girl that couldn't control her feelings or emotions. I felt insane and I figured that my sanity was out of my control at the time. To a point it was... there were things I couldn't control. I couldn't control the deep ache that settled in my chest for weeks. I couldn't control my inability to sleep, or my lack of appetite due to the nausea that seemed to follow me everywhere. I couldn't control the horrific nightmares I had when I did sleep, and I couldn't control feeling overwhelmingly heavy all the time, almost as if an elephant was constantly sitting on me.
So, I took hold of the things I could control. I controlled how often I fell on my knees and talked with my Heavenly Father. I controlled opening up God's word and reading to find peace and wisdom. I controlled the fact that I wouldn't allow myself to be left alone at any given time for the first little while. I controlled who I spoke to and who I did not. I controlled which texts and phone calls I answered and which ones I did not. I was constantly seeking for peace. Hidden in all of these little insignificant choices was my deep desire to not let this tragedy destroy me. I wanted so desperately to be strong, and I learned along the way that all of us are blessed with that strength inside of us. God is more powerful than pain, and He can bless us with extra strength if we so choose to develop it.
2. I decided to find myself by losing myself in the service of others. One wise teacher, mentor, and friend once told me that "you find yourself by losing yourself in the service of others." I figured in this case I didn't have anything else to lose so I might as well distract myself at least. I expressed at one point my deep and painful feelings to this friend who offered me the opportunity to come volunteer as his TA for a semester at a local high school. I'd be working with high school seniors, and for whatever reason I felt a desperate need to except his offer.
Without going into great detail about that glorious experience, I have to admit that it was a MASSIVE blessing at this time in my life to get to know those high school seniors. Being greeted with "Good morning Miss Dalton!" every morning brought such joy to my soul for a time, and my heart felt full with love for those bright and beautiful teenagers that I was working with. Serving others played a tremendous role in my healing process, and it can in yours too. It's all a part of opening up your heart again to be able to love. Love is the greatest healing power in the entire world, and when I let a small piece of my heart love again, it meant the beginning of that small piece being mended and restored little by little.
3. I had to purge my past and forgive. Forgiveness was one of my more difficult tasks on my path to healing. I wanted to believe that I had forgiven him from the beginning. And I had reached forgiveness to a point, but I hadn't let it all go. I spent so much time being angry at him for destroying me. I spent so much time agonizing and reliving those moments of horror. I spent so much time feeling terrified of the people I came in contact or with, or afraid that maybe I didn't have a future past this experience. Honestly, I had to experience those difficult feelings in order to truly forgive and surrender my past in a way that doesn't let it define my future. Along the way I learned some things about forgiveness.
First, forgiveness does not mean putting yourself in a place where your heart keeps breaking. It doesn't mean reinserting yourself into someones life who has hurt you tremendously. Sometimes we have to love and forgive people from a distance, and that's okay. Second, forgiveness is not the same as excusing. We do not have to excuse someone's wrongdoing in order to forgive them. In fact, the more we allow ourselves to experience and recognize the damage that has been done, the greater our capacity to forgive, change, and move on. And third, forgiveness creates a safe space to allow God to heal your heart. Restitution for me came from my Savior, and it came in the form of healing and restoration of my heart and mind. Once I achieved forgiveness with the help of the Savior, I was able to feel free again which opened my heart up to be healed and purge the negative emotions I had towards the one who had wronged me. We all have that power to forgive. And if we don't have that power in the beginning, pray for that power. God will bless you with the innate power to forgive and move on.
4. I had to give all of my pain to my Savior. I remember a very specific time in the course of events where I learned this crucial life lesson. I had just moved with my parents, I was in a new place, and I had met some new people that I was terrified to open up to or think about to much. I was sitting on the edge of my bed one night in horrendous emotional pain. I felt panicky and weak and my heart hurt tremendously. I felt confused and angry and I sobbed uncontrollably for the loss of my peace of mind. It had been months... I should be over it... I shouldn't be hurting so much. In that moment I wondered if I would ever feel peace again.
At the time a thought came to mind that I had read about how the Savior is just waiting to heal us of our wounds and misfortunes, but in order for us to allow Him to heal our hearts, we have to ask for healing. It occurred to me at that moment that I had not yet simply asked for Him to take my pain. It seemed impossible for one moment of inquiry to heal such a wounded and broken down heart. But I had to try, and I had to muster up enough faith for healing to occur. I retreated to my knees and pleaded with the Lord to heal me. To take my pain. And I remember clearly stating, "Please... I don't want this anymore!"
At the conclusion of my prayer I felt stillness, and I felt an obvious lift in my heart. I felt anger melt into the floor, and I felt peace fill my soul as the tears flooded down my face. I knew in that moment that my prayer had been heard, and that I was currently in the process of having it be answered. My merciful Heavenly Father was going to take all my broken pieces and build them into something beautiful. I just had to excersise patience, and after that moment, my grief and pain in the days to come was less intense, less excruciating, and more bearable. It was nothing short of a miracle and I know it's because when we lay our burdens at our Savior's feet, He heals us.
5. I had to recognize that I still had worth. I was broken, wounded, damaged... I've used those words to describe myself so many times. I knew that to most men I was "damaged goods," and in my mind I didn't disagree, and I didn't believe that I had anything to give or offer anymore. But in order to experience healing, I had to learn differently.
Nobody is ever just eternally broken or damaged unless they choose to be that way. I have so much worth, and so much to give in my interactions with others. I may be broken, and I may have some scars, but my brokenness has transformed me into something beautiful. It's ironic because in the midst of it all, in the past year my capacity to love others has grown. I know now that someday when I discover the man who I was meant to be with, my love for him won't be any less because of the love that I had for the man who hurt me.
You're not broken! You're not damaged! You're not worthless! And in the sight of God, you have infinite power and ability to love and be loved, and continue on your path towards success and happiness. That was something I wish I would have understood faster, because it's so crucial when we are healing to know who we are, and by knowing who we are, we can take back our power that God blesses us with to prosper and live life to the fullest.
6. I had to be thankful. Gratitude is essential for healing. Either I was cursed because I lost who I thought was the love of my life. Or I was blessed because I was saved from being put in a situation that would have destroyed me so much more if it would have gone on longer. I've come to know that I was gloriously blessed, and I thank my Heavenly Father every day for saving me without me even knowing that I needed to be saved. When we express gratitude, we open our hearts to healing and happiness and let go of things that we no longer need to hold on to. It's not easy to find gratitude after such horrific experiences, but it's possible to find it. We simply start by seeking for the desire to be thankful. After that, it will come if we exercise faith.
6. I have to keep striving. Stop crying. Get out of bed. Put one foot in front of the other. And continue on in faith doing the things you know you should be doing, and the rest will fall into place. You don't get anywhere in life if you spend it crying in a bed or a chair. You experience peace and healing by living and moving forward. And I will be the first to admit that it is not always easy. There will be days for a long, long time where you grieve and cry. There will be days where you will feel like you cannot continue. There will be days where all of your feelings come to the surface in the form of tears. And there will be days you just want to scream because you cannot avoid the prickly parts of healing from trauma.
But I promise you that there will also be days where you find unexpected smiles creeping across your lips. There will be days when you'll meet new people that you're meant to love and be loved by. There will be days when you find yourself laughing again. There will be days when you'll experience joy in the moment, peace for the past, and hope for the future. These moments are what make the painful moments completely worth it.
Healing is possible. It doesn't come instantly but IT DOES COME. There are still days that I hurt and struggle. There are still days that I have to relive the past. There are still days that I experience longing and hopelessness, but they get less and less the more I strive for healing. It's important to remember that you are always loved. And there is ALWAYS help and happiness ahead.
Note from the Writer: This article is in no way, shape, or form intended to be used as a way to "man bash" or condemn my ex-fiance. In the past year of my life, I have felt complete forgiveness towards him and the decisions that he made at that point in his life. I truly hope the best for him and wish him well. I share my story today in hopes to reach a point of understanding and compassion for everyone who is going through, or who has gone through something similar. I know I am not the first woman in the world to be betrayed, therefore I feel a deep connection to all of my fellow sisters who have been hurt. This is to all of you who feel dreadfully alone... You are not. You are understood. You are loved. Heaven is watching out for you and God is aware of your tears. There is hope and happiness ahead.
I have always been a very religious person. Religion has always been the core and center of my life and actions, and I grew up being taught true principles of the institution of marriage and family. I was always taught God’s purposes for marriage and family, and how to seek for and live in such a way that we can be blessed with an eternal family and an eternal marriage.
“Families can be together forever.” That was my dream since I was a young girl observing my older siblings lives and watching them marry in the Temple and find joy through obedience to the doctrines and principles of the gospel. I wanted a marriage that would last forever. I wanted a love that was governed by God’s law, therefore making it the only true and pure form of love that exists in our world today. I dreamed of children and my joy being made full by raising a generation of strong and faithful children of God. These were all righteous and worthy goals and dreams. There was just one problem with this vision: I thought it would be easy.
Not only am I single as I write this article, but I’m THAT girl. That girl that spent 6 months with a ring on her finger thinking that I had finally found what I'd been looking for. The girl that was about to step foot into the journey of her "dreams coming true.” That girl that planned an entire wedding only to find a week prior that it was all a lie from the beginning. That girl that has a story to tell. That girl that believes that experiences like this MUST BE TALKED ABOUT because keeping quiet only leaves blank spaces for deeper wounds and undeniable scars. So today I’m finally talking about it. Because my hope is that someone else out there that reads this knows that she's not the first one to go through something similar, and it’s okay to hurt for a long long time. It’s okay to take time to grieve. It’s okay to feel broken for a while. And there IS HOPE FOR HEALING, even if in the moment, the healing that you seem to desperately be seeking for seems unreachable.
It’s been one year. One long year where I’ve had the opportunity to experience a cleansing process that has left me feeling like I’ve shed my old skin… And the funny thing is that at times I still feel like I’m trying to get used to my new skin. The new me. The me that was born out of indescribable and insurmountable levels of pain that I never thought I’d experience. It’s been one year since my entire world came crashing down within seconds, and my whole life changed.
I still remember that night as if it were yesterday. I was sitting on the couch with my fiancé, and everything seemed blissful. I was to be married in a week, and I loved this man very much. We had spent four years building a friendship, and almost a year cultivating a relationship of love that is patient and kind. A relationship that I thought to be above any other relationship I’d ever find. My life seemed like pure bliss, but even so, I felt a distant sting and fragility in the air that I couldn’t quite put my finger on, so I stubbornly pushed it in the back of my mind and tuned my thoughts to visions of wedded bliss.
I expressed to my fiancé the thoughts and concerns that seemed to buzz through my mind, but he assured me that all was well and that all would continue to be well. I believed him. I trusted him. And I resolved in my mind that I was just being paranoid with my own worries that were irrelevant and irrational.
I resolved to keep busy, concluding that my worries would subside. I suggested we go and run an errand for the long-anticipated wedding we’d been planning for the past six months. And for whatever reason, I stood up and reached for his phone instead of mine to inquire as to when a particular store would be closed.
That’s when I found it.
Three words on his search bar that changed my entire visage. Three words that concluded that he’d been searching for pornography possibly just hours ago. My entire demeanor must have changed in the brief second when I read those words because he inquired of me what was wrong. I asked why those words were typed into his search bar, and I looked at him with pleading eyes hoping that there was some logical explanation.
Somewhere within the course of those events, I exited out of that window on his phone, only to find multiple windows open of sick and twisted ideas of what women supposedly look like. I felt sick to my stomach.
He did a great job.
He put on a show.
He reassured me that his brother had a problem, so the only obvious answer was that his brother got a hold of his phone and it wasn’t him.
The coldest thing I’ve ever witnessed in my entire life is the lying eyes of the man I love gazing deep into the windows of my soul as multiple lies rolled from his lips. He knew it was all a lie, but for some reason, he could look at the woman that he claimed to love so dearly straight in her eyes and lie straight to her face. I never knew until that moment how unconsciously cold a single person could be.
We talked for hours… it felt like days… And somehow, he managed to semi convince me it wasn’t him.
I came home that night with a pit in my stomach. Feeling like there was darkness all around me, and for some reason, it wouldn’t leave.
I’ll never forget when the truth finally came out.
I called him on the phone and asked for reassurance again. I pleaded for the truth, but I didn’t believe it was him until it finally came out.
Those words still sting. “It’s me… I have a problem.”
At first, I thought it was some sick joke. It never occurred to me that pornography addiction would ever leak into my life or affect me in such a deep and excruciating way. I’d never thought too much about that particular aspect of people’s lives until it glared at me in the face through dark and wicked eyes. At first, I thought maybe I called the wrong number. I thought there isn’t a way in the world this could be true. I pleaded with God: “Please no… No. No. NO! Please don’t do this to me!”
The phone fell out of my hands and hung up before I had a chance to say much more. I wanted to scream. I wanted to cry. I wanted to kick and punch the wall. But in that moment, I felt paralyzed. I had a sudden frightening sensation of someone grasping at my neck as if someone or something was attempting to suffocate me to my death.
It wasn’t long before I found myself sobbing and screaming uncontrollably. Between sobs, my heart felt morbidly dysfunctional and stone cold. Little did I know it would feel like that for a very long time. I firmly called my wedding off as I sat across from the man I loved who suddenly seemed to be a stranger. I spent the night restlessly in a panic with uncontrollable tremors from my head to my toes. Everything felt dark and empty, and I couldn’t help but wonder if maybe the sun wasn’t going to come up in the morning this time. Maybe I’d be swallowed up by this suffocating darkness for the rest of my life.
The occurrence of events after that is irrelevant. Looking back, everything seemed blurry and painful for days and weeks on end. It was all over with him. But the pain wasn’t. And it wouldn’t be for a very long time.
The days passed in everyone else’s world, while my time seemed to have stopped. Time for me was now measured by all of the different kinds of agony I was feeling. It seemed to change so frequently.
At times I felt as though someone had taken a dagger and fiercely pierced it into my heart. Over time it would then slowly be yanked out and then thrust back in again.
I almost always felt on the verge of tears. And no matter how hard I tried to keep them inside me, my tries were futile.
I couldn’t eat.
I couldn’t sleep.
Everything felt lonely.
Everything reminded me of him.
Everything made me feel overwhelmingly sick to my stomach.
I felt paralyzed.
I felt traumatized.
I felt worthless.
And I felt incredibly afraid.
There were lots of times where I felt uncontrollably numb.
I’ve scrolled through Facebook countless times and have seen all of my friend’s wedding announcements and happy wedding days. When this whole journey began, I didn’t understand why the whole world seemed to be able to marry the first person they were engaged to. And I didn’t understand why everyone else deserved love and happiness, but I didn’t. I felt like I’d been robbed… Robbed of my eternal marriage and cheated out of my eternal family. And unfortunately, this feeling of being robbed was accompanied by emotional pain and suffering I never even knew existed. I didn’t even know that all of my extreme thoughts and feelings had a name. But for some reason, once I found a name for it, I felt less alone.
Dr. Jill Manning, a marriage and family therapist and Certified Clinical Partner Therapist, defines trauma as “a deeply distressing or overwhelming experience that is commonly followed by emotional and physical shock. If left unresolved or untreated, traumatic experiences can lead to short and long-term challenges.” Dr. Manning then goes on to state that “betrayal trauma occurs when someone we depend on for survival or are significantly attached to, violates our trust in a critical way.”
Considering the fact that there’s a clinical name for it, I don’t believe that betrayal trauma is a rare condition. Nor do I believe that the number of people that are affected by it are small in number. Unfortunately the world we live in is filled with evil influences, traps, and snares that lead people to make poor choices, and therefore hurt the people that they are supposed to be loving the most. I suppose that’s why it’s so important that we cling to a loving and merciful Heavenly Father and Savior, Jesus Christ who is always the way back to hope and healing, no matter how far you’ve strayed, or whether you are the victim or the perpetrator in any given situation.
For my particular situation, I was the victim. And in such cases as mine, I had to reach the point where I stopped seeing myself as a victim, and saw myself as a woman of God with innate power and ability to experience healing and wholeness once again, which is exactly what I intended on doing…
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.
All is Fair in Love and Lyme
"It's not fair!" I repeated this useless phrase to myself multiple times over when I first was diagnosed with Lyme disease. How could it possibly be fair that my life seemed to point to one horrific disease that robbed me of my dreams!? How is it fair that my dream of someday finding true love seemed utterly impossible? All is NOT fair in love and war. Fighting a war against your own body is anything but fair.
I remember throughout my younger years I seemed to be in love with love itself. I loved the idea of falling in love, followed by a whirlwind romance, an extravagant wedding, and happily ever after. That dream seemed sufficient. Sufficient for lifelong happiness? I suppose so. Sufficient for long suffering, enduring to the end, and coming out conqueror with my faithful husband by my side? Well I suppose I never actually considered hardship grinding its way between me and my true love. Unfortunately for me my hardship came long before my true love ever made an entrance. Not only that, but at times it seems as though Lyme disease laughs in the face of love. And alas, "it's not fair."
To Lyme or Not to Lyme
The problem seems to be the never ending string of problems I seem to have. More like eternal string of symptoms, loud opinions, diet restrictions, supplements, and ex boyfriends. It all begins with a spark and ends with a burned out fire, and a few extra symptoms. It all really comes down to one question… “Despite my Lyme disease, am I worth it?” It’s something to consider when deciding the all-important decision of love and Lyme, or love and health?
So am I? Am I worth it? When I suffer headaches, skin lesions, excruciating pain, nausea, weakness, anxiety, etc… am I worth those daily battles? Battles that are not won by one simple gunshot but multiple gunshots aimed all at once. Eternal supplement intake, acupressure, heating pads, hot water bottles, increased water intake, hot baths, dietary restrictions, IV's, injections, detox, detox, and more detox! All of which are highly important battle techniques in fighting Lyme. One alone is not enough to relieve pain. They must all be implemented in order to defeat. Now tell me, what man in his right mind would want such a horrible fate thrust upon him when instead he could have a nice healthy woman who can pamper him to his heart’s content? Most men when given two different roads would quickly pick the easier route. And I do not blame them. It comes back down to that basic question of am I worth it?”
So far… the answer has been no.
Multiple Symptoms, Multiple Men
Throughout this journey I’ve managed to become acquainted with three “types” of men that are willing to date me for a short period of time. Each “type” of man has “symptoms” of his own that should send every woman with Lyme disease running! Lyme in not a disease for the shallow in heart. It simply doesn’t work with these kinds of men.
1. "The Hero"
The “hero’s” symptoms include the constant urge to “swoop in” and save the day! Any chance for them to rescue a cat stuck in a tree, or an injured bird is their cup of tea! This alone is not a bad quality, but when all of a sudden I become the injured bird then it becomes really degrading! I’d like to take a moment to clarify: I’m not a cat stuck in a tree, I’m not a wounded bird, and I don’t need to be “rescued.” I have a disease. This does not mean that I am incapable, or in need of “saving.” Finding my true love isn’t about finding someone to “fix” me. It’s about finding someone to support me. I don’t want to date superman, or spiderman, or batman. I’m not looking for a hero to “save” me. Service travels much further than saving. Forthwith compassion is much greater than “fixing."
2. "The Main Man"
The “main man’s” symptoms include the delusional idea that dating me would be equivalent to those tragically romantic movies about a terminally ill woman who falls in love with some hunk, followed by a whirlwind romance! This guy seems to think that he is the “main man” in my tragic movie plot. For the record, my life is not a romantic tragedy that you find in a movie. What they don’t show in those movies is the horrific pain flares, and the extra effort it takes just to survive the day. They don’t show the chronic migraines and the all over body pain. They don’t show the pure exhaustion, the seizures, or the daily routine of trying to eliminate as much pain as possible. Those movies are unrealistic. True love goes further than marrying someone just before they die of a terminal illness. There’s more to it than that. It’s so much deeper than that. My illness may not be romantic, but lucky for me I am much more than my illness.
3. "The Award Winner"
To the “award winner,” it does not matter the tragedy that is taking place inside my body, because he simply does not care about what’s on the inside. His symptoms include his keen need to win. It’s all about claiming his “prize.” I will always be a trophy to that kind of a guy. Something that looks nice that he can brag about to others, but when it comes to my hardships and my struggles, he doesn’t care. It’s all about him and how he looks, and when I look bad or am too sick, I all of a sudden become “a sacrifice” to him, or “totally crazy!” This guy’s symptoms include his clueless nature as to what I go through on a daily basis. He doesn’t know me. He just knows what I look like. To this guy I’d just like to say that I am NOT your trophy. I am NOT your object. I am NOT your toy. I believe that this man is the most dangerous of them all, because he’s very skilled at pretending that he cares. Well, unfortunately he doesn’t. Heaven help the chronically ill woman who ends up with the “award winner,” because he is definitely not your prize to be proud of!
Lyme that's Real and Love that's Not
In today’s society we all seem to have this delusional idea of what love is. Whether that be the “flawless relationship” which includes “happily ever after” where nothing ever goes wrong, or the sex saturated relationship that is centered on physical pleasure and actually has no correlation with real, true, and pure love. Both of those concepts are a hideously skewed idea of what love is, and with the majority of people thinking that we “fall in love” it’s obvious why it seems impossible to ever have a successful relationship with anybody whether they be one of the aforementioned men above or not.
When you have Lyme disease you learn things that you otherwise would not have known. Like how an act of true love is helping someone walk when they’re in too much pain to do it themselves. An act of selfless love is sitting at someone’s bedside and enduring to the end with them. True love is about walking side by side together, not about one person walking in front of the other. True love is putting that other person before yourself, and working together to make things work. This concept goes for both the sick person, and their healthy counterpart.
Love is not always going to be “rainbows and butterflies.” At times love is enduring to the end. Love is watching the person you care about the most in pain and staying by their side through it all. Love is about compassion, understanding, and long suffering. For we do not “fall in love” as the saying goes. Love is not this frivolous concept in correlation to tripping and falling down the stairs. For to fall in love would make it too easy to “fall out of love.” We do not “fall in love,” but quite the opposite actually. If anything, true love involves “rising to love.” When the person we love needs them, we rise to the occasion! We ascend in kindness, charity, benevolence, patience, and so much more! When looking at love with this perspective it somehow causes us to look at the person we care for with a little more respect, love, and understanding. Lyme disease is real, but this concept of “falling in love” is not. If it was, then every man that so called “fell in love with me” would easily fall out of love when he discovered that Lyme disease is a test of endurance, faith, and so many more divine attributes that at one point or another we all seek to have.
One Man that I Forgot to Mention...
In my aforementioned list of men that we all seem to come in contact with, I forgot one special guy that I haven’t yet had the pleasure of meeting. This guy doesn’t have the negative symptoms of the others. This guy sees me as a human being, not just a disease. A man that strives so valiantly to put God first in his life that in return God blesses him with the ability to love his wife “in sickness and in health,” and “for time and all eternity.” A man who realizes that his strength and abilities come from the Almighty Creator and a man who’s attributes are reminiscent of Christ, our Savior, and Redeemer.
This man sees past my Lyme disease and sees me for who I really am. He doesn’t see me as “crazy” and “exotic” but passionate and wise. Someone who doesn’t see me as “sick” and “a sacrifice to him,” but someone who sees me as strong and a blessing to him, despite my illness. This man has courage, because dating someone like me is going to take a whole lot of courage. We all want somebody who loves us for what’s on the inside. This kind of guy knows how to do just that. This kind of guy is what every woman wants, healthy or otherwise.
True love is incredible. It’s incredible when it’s done correctly. It’s incredible when it is centered on true principles established by God. It is incredible when you have two people, brought together by God, striving to stay together through thick and thin. It is people who love each other so much that they would do anything to strive to be a better person for the person they love.
So is it Really Fair?
Just to clarify, this is not about me bashing on men, women, or dating. This is not about me stereotyping unfortunate courtships, and blaming one person or the other. Not every man is the kind of man in the descriptions above. This isn’t about me blaming healthy people or sick people for the painful relationships that we all seem to have at one point or another. This is me saying that we all deserve better than what we are getting, so should we not all be striving to be better than we are? Better for our future loves, and better for our Heavenly Father who loves us perfectly?
A man who is on a date with a woman should respect her. A woman who is on a date with a man should respect him. It’s about time that men start treating women with respect and love and it is about time that women strive a little harder to become women that are worthy of that “prince charming” that we all so desperately long for!
The problem with Lyme disease is that it seems to place a wall between you and any potential suiter. It’s hard for anyone to look past such a drastic part of my life and see me for the woman that I am. This does not mean that I should give up hope.
So is it fair? I do believe it is. Lyme has somehow helped me to dodge more bullets than one. Lyme has saved me from marrying the villain with “nice hair” and “blue eyes” more than once. Lyme disease has somehow managed to be my own personal alarm system for the guys who think they somehow have a right to take advantage of me. I’ve dated my fair share of “heroes” and “award winners” and quite frankly Lyme has helped me to realize that it’s okay to take time to fall in love with the right person. Love is so much more than infatuation. Love takes time. Courtship is a time to become best friends and discover who you really are deep down.
No doubt about it, all is fair in love and Lyme. So to the chronically ill women who assume that you’ll never find “the one”, keep looking. He’s out there somewhere. Now is not the time to give up hope. I once had a friend of mine tell me that “it’s a good thing you dodged the bullet before it became a tornado, because you can’t dodge a tornado!” Your vulnerabilities due to your illness are very clear, and in a way they protect you from marrying a tornado. Love is so much more than what this world makes of it. You ARE worth it! Don’t give up faith or hope. God will provide a way. True love endures, which means we all can endure a little loneliness while searching for the love we’ve all been waiting for.
And to my future love, I can’t wait to meet you. I suppose life wasn’t meant to be fair, but fairness is irrelevant because I have Lyme whether that’s fair or not. I fight Lyme every day so I can someday make you happy. I fight Lyme so I can heal and be the woman that you need me to be. I strive to be a better person and center my life on God, so someday He will provide a way for me to find you. I may be chronically ill, but I can promise you that I will be the best chronically ill wife you could ever ask for. Not only that, but I do believe that I fight so hard so someday I can get better. I continue to fight so I will heal for you. I long to make you happy. I long to be your partner through life, for time and all eternity. “You lift me, and I'll life thee, and we’ll ascend together.”
Dear Future Children,
My dear babies, I know the difficulty of seeing your mother as young girl herself, but as I sit in the silence of night, being my inexperienced age of 19, I find myself dreaming of you beautiful children more often than not. I’ve always dreamed of you, but the closer I get to finding your father, and making a life of our own, the more I find myself longing for your presence in my life.
I often find myself dreaming of every precious memory we’ll make together. Your first word, your first step, or even the first time I have the privilege of laying eyes on you. I envision my sweet little clan following me into church, like a stream of ducklings clumsily swimming after their mother. I dream of every laugh, tear, and joy that will come from a calling as fulfilling and celestial as motherhood. I picture your first date, sending you off to college, and starting beautiful families of your own. And I can only imagine the joy that will fill my heart and soul as I watch you follow God, and live your lives accordingly.
With that said, I don't believe that motherhood is all endless bliss. I realize that for every laugh there will be a tear. For every joy there will be a heart ache. I especially know that chronic illness will somehow manage to find its way into our family. That thought is my worst nightmare. If it comes to pass, just remember that despite the hardships that will come our way, I'm still thrilled at the idea of bringing each and every one of you into the world. Raising you in a home centered on love for each other, and love for God will be one of my greatest joys. Every precious moment with a child (whether that child be young or old) makes the hardships completely worth it. I truly believe that.
My precious children, right now your mother is in the process of suffering though something awful. I hope and pray that you will never have to suffer on this excruciating level for this prolonged amount of time. But if it comes to having Lyme thrust into your life, your Mom will always be with you. I will fight with you, I will fight for you, and I will love you every step of the way. I’ve traveled the road of hardship, I’ve felt the physical pains of chronic illness, and I’ve endured emotional trauma caused by physical ache and pain. It’s not over yet. Your mother still has a battle to fight, and I intend to fight until the end so I can bring you children into this world and be the mother I intend to be, and that God intends me to be.
With that said, there are things I want you all to know. Things that you should cherish. Things that are a part of your heritage, and part of God’s plan for you. These words of wisdom from your mother come directly from my heart, and they will help you to navigate your way through illness and affliction. I will teach you as you grow, and I only hope that you will cherish my words, and keep them tucked safe inside your heart. Lyme is no easy battle to conquer, but as you fight, remember your mother who will never stop fighting until she comes out conqueror.
Your Loving Future Mother