Chronically Beautiful!
 We want to thank each and every one of you who submitted a question to us about us, friendship, relationships, and coping and maintaining when one or the both of you face chronic illness or disability. We had so much fun writing this post, and we hope that as you read it you will gain as much insight as we did writing it! For the purpose of this particular post, and to make it easy for all of you to tell our answers apart, Zach will be answering questions in BLUE and Claire will be answering questions in RED. Quick Intros:Claire: I'm Claire, I'm in my twenties, I love crafting on weekends and working hard when I can on the weekdays. I love goats, the color pink, and anything beautiful from the inside out. I manage a small gift shop during the day, and I'm a complete farm girl in the afternoon. I'm a certified health coach, blogger, and lover of learning. The truth is that I wear many hats. There are some days where I feel like I can take on the world, and there are other days where I submit to laying in bed and managing pain and sickness. This is because I have Chronic Lyme Disease and Endometriosis. I was diagnosed with Lyme about five years ago, two years after my mom was diagnosed with the same illness. Together, my mom, dad, and I have walked the frigid storm of treatment protocols, herxing, flaring, pain, and sickness. We've pealed each other off of the ground after passing out. We've cooked meals for each other through pain and sorrow. We've held each other's hands through tears, and we've walked around the house, arm in arm, sustaining the ones that can't walk due to pain. We have slowly made our way back to quality of life. And although we are not yet "cured," and life is far from perfect, we survive this disease through God's grace, and Christ's enabling power and guidance. The truth about Lyme is that life can still be happy and beautiful even with such an awful and life-altering illness. God grants me that joy and hope when I need it in many ways. He granted me that hope through scripture and prayer. He blesses me with that hope through peace, calm, and relief of pain. He blessed me with that hope when He sent me down to parents who care for me so well. And he grants me that hope through the people who choose to stay in my life no matter how sick I get.  Zach: Hi! my name is Zach! To start, let's cover some of the basics: I am 21 years old and I work on an organic farm currently learning many different techniques on how to grow and eat organic. I'm also learning how to maintain my health while navigating my way through the healing process, and in more ways than others, “the refiner's fire." Maybe I am what you could call a wearer of many hats, and acquiring new hats every day! Although some may disagree with that, that's ok, because no disability or illness should stop anybody from doing what they want. I once heard a woman say that “everything is figureoutable." You just have to find out how to do exactly what it is that you want to do, then do it. Simple, right? Now, let's get the large elephant out of the way. You may be wondering what illness or disability I could have because I helped answer some of the questions in this article. I was diagnosed with Tourette's Syndrome. Tourette's Syndrome is a Neurological disorder which, in short, causes a lack of communication between the left and right brain. This lack of communication sends misfired signals to the body creating something you may have heard of called “tics'' (these are not to be confused with ticks…but also an underlying or root cause from ticks). This illness, along with many others, is neurological and physical. This could be why life is more difficult than not at times. As a baby, Tourette's would cause my whole body to shake, and as I grew older I would either drop or develop new tics. As Tourette's caused a lot of energy (to say the least), I often had to find different outlets for this extra energy to be used up. So after many years of basketball in the front yard and then trying many different sports as a teenager, I ended up in the multi-sport game of water polo. Now while I have had this “companion” my whole life, I did however recently discover this was considered a disability. Shocking as it seems this was news to me. I may have considered it at one time, but I didn't allow it. Even though most if not all around me did see it as a “problem,” or an “annoyance,” “different,” “weird,” or in some cases “flirty,” or “creepy,” I never really thought of it as a disability. So I wasn't the most outgoing kid and I didn't have a lot of friends, but this didn't exactly stop me from doing what I wanted to. Nor did it stop me from acquiring a few friends either. I have learned how to overcome through complete faith in my Savior, Jesus Christ. I do know that healing is possible through the refiner's fire. And I know that it is through these fires that we are perfected and healed!  What Are Your Symptoms and How Do They Affect Your Life?Zach: Tourette's Syndrome has two parts; it starts neurologically and ends physically. This is possible because everyone's physical actions start in the brain and end as a physical action. Ex. shaking someone's hand, nodding your head, etc. One of my greatest symptoms are tics. Tics are the things as above, but involuntary and random. For example, I have a tic where I flick my pinky finger a certain way, or another tic I have affects my breathing. As I said before, I've had tics come and go or get worse. Tourette's affects my life in many ways. As for the tics, they are there a lot depending on what is going on in the way of moods. This means my emotional state can affect them and make them worse. Being nervous or anxious greatly causes them to become very escalated. On the other hand, if I am calm and comfortable then my tics are very small and lessened very much. Claire: My symptoms vary and include but are not limited to:
One of the most difficult aspects of Lyme is that a lot of people don't believe that Lyme disease is a real illness which then leads to rejection by friends, family, doctors, etc. I've spent a lot of my Lyme journey shedding tears over the disbelief of other people. People don't believe it, or they don't understand it, and a Lymie is often treated as the outcast or the "weird one" of the group. Making and keeping friends has seemed nearly impossible at times, and the crippling physical symptoms along with the neurological ones can seem like the heaviest burden to bear at times. How Did You Two Meet?Zach: The first time I met Claire was actually during an interview with her dad. As was mentioned above, I work on a farm. I also happen to work on the family farm. So I came to find out that she too helped with the interviews. Our first time meeting was very formal and quite short. Claire: Picture this: I'm standing in our work building for the farm (we call it "the white building) with my dad, waiting for some kid to show up for an interview after many frustrating and failed interviews, and I'm wearing a floor-length dress because I had a prior engagement, and Zach walks in. I had zero expectation that this interview would go well, and after many questions towards Zach and a noticeable difference in Zach compared to other interviews and young people we had interviewed, Zach left and we decided to hire him as our ranch-hand. That conversation went something like this: Me (to my dad): "Well what do you think?" Dad: "I like him!" Me: "Me too! Let's hire him!" Let me just say, never in my wildest dreams did I imagine that our hired help would become such a big part of our family. But as he spent time with us on the farm, he quickly over-exceeded his job expectations and became a close friend to me and my parents. All three of us love his addition to our farm and family, and we care for him very much. How Did You Two Become Friends?Claire: It's always good to get along with the people you work with, but it's even better when the people you work with become like family to you. My dad always taught me to treat your employees like family and care for them as such. And with Zach it just all kind of fell into place like that. Every time I'd find Zach in the white building, he'd wish me a good morning and asked how I was doing. This was before he ever knew about my illness, and as a young person in this world, I found it refreshing that a random person who didn't know me inquired as to how I was frequently, when frankly if he didn't want to he didn't have to. Zach and I started training our cart ponies together that summer, and as we did so our conversations seemed to be about anything from school to dating, farming to equine therapy, to eventually sharing our experiences and with Tourette's and Lyme. Zach also happened to be by my side helping me for nearly the entire transformation of my gift shop and we shared so many thoughts and laughs through our experience that we just couldn't help but being friends outside of work as well. Zach: Claire and I became friends through working on the farm together! About a year and a half ago when I started working for her family, we had 2 ponies. So at the time and she would come out later in the mornings to work and brush down the horses so we would have about an hour or so to talk to each other and just get to know each other. I think we also became friends because she thought I was super weird because every time I saw her I would kind of perk up and say "Hi," and ask her how she was. (She admitted that too.) After a while, we started becoming better friends. Fast forward a few months we became close friends and I was washing dishes in the kitchen after dinner! I think we really became friends because we weren't afraid to be open and honest with each other.
What Was Your Initial Reaction to the Other Person's Illness?Claire: Common to Tourette's is the fact that if someone with Tourette's is nervous and stressed, their tics are worse. This seemed to be the case with Zach during his job interview. I remember saying to my dad after Zach left, "What was that thing he was doing with his face?" to which my dad replied, "I'm not really sure, it's some form of disability." Dad later came inside a week later after working with Zach and announced, "Okay, Zach has Tourette's!" Honestly, finding out that Zach has Tourette's never really made me see him any differently. Yes, I noticed his tics, but it I think because of my history with Lyme, it never occurred to me that that made him "weird" or "different." Now that we've been friends for over a year, Zach still tics, but I just don't notice them unless I'm consciously looking for them. I just don't see "the kid with Tourette's syndrome." I see Zach and how much of a hard worker he is. I see our friendship. I see his effort and care. At the end of the day, the Tourette's just doesn't matter as much as the person does. Yes we have hard moments. Yes it's not picture perfect because we both have physical and mental struggles. But as we choose to help each other and have compassion on each other through the hard, our illnesses just seem to dissipate. Zach: In all honesty, I don't remember. And to be even more honest, I don't remember caring either way. Although I did care about her as a person because she more than deserved that, her illness didn't really bother me. Whether it was because I didn't fully know at all what it was, or because I didn't know that I would find out many months later what it truly was. Now, I did ask questions just so I could know and understand better. I don't remember being shocked or thinking: “I can't be friends with a sick girl," or “Oh my goodness! How bad is it?” That was probably because I had my own “conditions" (as I called my own at the time), so I just kept being friends with Claire. I didn't want an illness to affect a friendship because that's how I had been treated my whole life; as the “oh you're weird so we can't be friends" kid. I will also say this: Being Claire's friend and having such an amazing friend who does have a chronic illness, has shown me what love truly is. It has also shown me that the illness does not define the friend with the illness but it can define who you or I as a friend really are. How does your illness/disability make your relationship different from other peoples relationships?Zach: The illnesses and disabilities that we have make our friendship different (I think I speak for her when I say this too) from other people's relationships. Our relationship is different because the way the world views people who are sick, is not as they should. Our relationship is different because it is built on an emotional connection to each other and God. It is different because a lot of relationships in the world fail because one or both look inward for what they want rather than looking outward as to what they can give. Claire once told me: "Zach, whenever you do something for anybody, ask yourself this: 'Am I doing this because I truly love this person or for some other selfish reason?” As the scriptures says, “If ye love me, keep my commandments.” So if we love God first and are following Him, we naturally love each other a lot better than if we didn't. Due to our various difficulties, our focus (to the best of our ability, might, mind and strength) is to God because we know that He helps us progress and move forward. When we face a fork in the road or a decision to make, is our choice pointed towards God? Or is it based on what we want? If we love God, we naturally choose the better choice for us and God. If we choose to love God, we choose the best decisions to progress. Similarly, love in any relationship is a choice. No one just falls in love. We either choose to love, or we choose to stop loving. I was once also told by Claire, that “Love at first sight, is just lust at first sight.” True love is not what the world portrays it as. Life can be truly hard, but true love does not falter because of a truly hard situation. Especially when we put our trust in God, because God is love and He can walk us through anything that we face! The illnesses and disabilities we have, if we let them, can be our best teachers for ourselves and others. Trials are often “humbling blocks" (or sometimes just really big rocks) which can allow God to teach us through our illness, disability, or whatever it may be. Claire: I used to believe in "love at first sight" until I was diagnosed with Lyme. I then learned that the men who claimed to love me at first sight were really just sweet-talking their way into what they wanted. One does not "fall in love." One GROWS in love. I second everything Zach just said! I'd just like to add that one more thing that makes us different is that we often simply just don't feel well. And so our time is spent doing low-key things to help others, or grow our friendship. I feel like a lot of young people get bored of their "sick friend." Zach and I don't, because we get it. We don't measure one another's value in how many "cool" and "fun" thing we can go out and do. We measure it by what's in each other hearts.  How Do You Support Each Other?Claire: I'd like to answer this question by sharing a story about Zach. It's not news to anyone in the chronic illness community that Lyme Disease can sometimes be intense. I have suffered pain so server that it has brought me to the floor in screams and seizures. There was one particular time when Zach just happened to be there (and many similar times after that) when I was in this form of pain. I just have to say that I have never in my life met a person other than my parents who has been willing to sit with me and be there for me multiple times when I'm in that state of intense and unbearable pain. That day, Zach jumped right in and did everything he could from holding my hand and reminding me to breathe, to filling up my hot water bottle and helping my dad make dinner that night so we would all get fed. Zach doesn't get paid to do stuff like that. It's not part of his job. Those things are acts of love that Zach chooses to do on his own time, by his own free will and choice. And that's love. The truth is that Zach makes space for my pain. We have a wide variety of pain and sorrow, joy and laughter in our friendship. No, our friendship isn't perfect. Yes we sometimes disagree and argue. In fact, there was a time that we did that more often than not. The different is that Zach stays, works things out, and is constantly trying to better himself so that we can improve and strengthen each other. We support each other best when we are individually striving to be our best. We say we're sorry. We forgive. We love. We encourage. And sometimes we give each other a dose of tough love when the other needs to hear it. We pray for each other. We have each others backs. In all reality, we seldom ask each other: "What can I do for you?" We simply strive to see a need and fill it. Zach: Claire is a huge support for me in my life whether she realizes it or not. She is such a strong woman and makes room to mourn with me when I mourn and to be happy with me when I am happy. She makes room for my emotions. She celebrates the smallest of successes and she knows how to make me laugh! I know that is small, but when one is sad, the smallest smile is ALWAYS the brightest. As I realized very recently, she is also the kindest woman that I know. You see, the world thinks that being “kind” is just sugar coating and making everything nice and sweet. Which just isn't true, and sometimes we need a real friend to show us the reality of the “real” in life. She does that when I need it. She also pushes me to do the things which even I know will help me to progress and is a huge support even when she doesn't feel well. The biggest way that Claire supports me is through kindness, love, grace and compassion. What challenges arise and how do your resolve them? How do you get through the hard times?Zach: This is a very good question, because everyone will have challenges! Some of the biggest challenges for me and Claire I think are that we both have neurological/physical issues because neurological or nerves manifest physically. There are some days when our nerves are on fire!! And unfortunately most of the days are on the same day! The challenges faced are many different ones such as anger or “grumpy explosions,” as we have come to call them, and the biggest way we have better learned to resolve them is through kindness. Kindness is growing in love, compassion, and grace. It is understanding their situation or their feelings and putting that above your own. Sometimes, we resolve hard things very slow, and sometimes we resolve them separately. For the most part we are there for each other to help each other through the hard times. A huge way that I get through hard times is gratitude. Gratitude towards God and even those around you is the best way to get through a hard time. Sometimes it's just holding the persons hand and giving a shoulder to cry on. More often than not through all the “grumpy explosions” and outbursts, prayer is how we get through it. Prayer, faith, increased love for each other and looking for the good in life. Claire and I sometimes throughout the day will ask the other what are three happy things or what has been the best part of our day so far. This is a good exercise because sometimes we just need to stop, stand still, and focus on God and the good that is around us! What is one piece of advice you would give to someone who faces chronic illness/disability about making/keeping friends?Zach: The best piece of advice I can give is this: God is key! If we follow God, learn of Him, and build our personal relationship with Him, our relationship with anyone who does the same will grow immensely as well. I have learned that love really does triumph all and if we allow LOVE to take over rather than what we think should take over (anger, bitterness, hard feelings, fear or whatever it may be), then we can help our relationships in life to grow much more! ("God gives us weakness that they may become strengths.") With that, I will also add this: Forgiveness is also an essential part of any relationship because we all make mistakes. All of us. And no matter how close of friends we are, we will make mistakes, misspeak, or say something we don't mean. And it can be hard to let go and to forgive, but the more we do that and allow room to see the other person for their good qualities, the stronger the relationship will grow and the small things won't matter as much because it will become easier to forgive and see the good in each other. Claire: I second all of what Zach just said! I'd also like to add this: Don't chase your friends. I spent so much time the first three years of Lyme playing the game of "chase" with my friends, siblings, and other relationships. I felt like because I have Lyme I had to prove to those people that I was worth spending time with. I had to prove to them that I had something to offer. The truth of the matter is that if you have to prove to someone that you're worth being in their life, than they are not worth being in your life. You are worthy of love and care even with an illness. I never had to chase Zach. We became friends because we both showed care towards one another, and that care grows everyday. That's friendship. That's love. If you're having a hard time making or keeping friends, wait patiently on the Lord. I am sure that He is preparing people for you that will be your people and will love you no matter your illness or disability. 
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