I was sitting in a tiny Thai restaurant when I learned what it means to be a “Christian.”
I use quotes because I think everyone has their own idea of what the term means. I had my own idea of what it meant. But on a hot Wednesday afternoon in June, I realized that maybe I had been wrong all along. I was meeting my friend Hannah for lunch. I sat hovering over a plate of pad Thai when she asked me how I felt about gay marriage. She got me. I paused with a mouth full of noodles and chewed slowly as I thought about what to say next. Then I realized I didn’t care if what I said next disqualified me from the standard definition of “Christian.” I told her I couldn’t care less who anyone loves. And I don’t. I was raised to believe that to love God is to love people. Period. I am not qualified to tell you who or how to love. I don’t think any of us are. Now, I need you to know I went to Sunday school. I went to Catholic school from the age of seven until I was 18. I know what the Bible says about the love between a man and a woman and the intentionality of God for this love and this love only. But I also know the command to love others as we hope to be loved. We are called to love without condition. Our salvation is not conditional, but is based on grace. We are also called not to point out the speck in another’s eye when there’s a branch in our own. We’re all pretty screwed up, if you think about it. So why are we so concerned with the righteousness of our appearance and what we advertise to believe? I thought about this as I listened to Hannah’s response. What she said next changed everything I ever thought I knew about what it meant to love God. She spoke of her grandmother and how she had given her a necklace of the Star of David. She had worn it the day before, tucked beneath her shirt. Hidden. “You’re not wearing a cross around your neck, but I know you’re a good person,” she said. Holy shoot. “I’m not wearing the Star of David, either,” she continued. I sat sweating in my seat. The sun was hot that day. In that moment, everything my mother tried so hard to teach me for 22 years made sense. We are so intent on advertising our beliefs in the hope that maybe someone else will want to believe the same thing. We talk about Jesus and wear our crosses and stick Bible verses in our Instagram bios just so people know where we stand. We decorate our churches with fancy lights and loud sound systems and trendy shirts to share our logo. Now, please don’t misunderstand me. None of this is inherently wrong. I do the same thing. I have a tattoo of my testimony on my wrist. I tweet about God and write blogs about faith and carry a Jesus keychain from my uncle with my car keys. We all do it. But think about this: what if we didn’t have tattoos or necklaces or trendy shirts or fancy lights or sophisticated sound systems or Instagram accounts or even a voice to show others what it means to be a devout follower of Jesus? What would we have left? That’s it. Our actions. Without the lights and technology and ink, we’ve got nothing but our hands and feet and mind. To me, these are the most valuable tools to be a Christian. Maybe that doesn’t make me a Christian, at all. Maybe Hannah was all wrong. But maybe she’s not. Maybe she was onto something that the rest of us haven’t quite discovered. With only our hands and feet and minds, we are left to love others in the most intentional and raw form. Without words. Some people aren’t ready for Jesus. Some aren’t ready for Bible verses or self-help books. All people are ready for love, though. And that leads me to wonder: what if everyone in your life could see your love for Christ without any words at all? That would be something really, really powerful. On June 26, 2019, Hannah McVay taught me that loving people has nothing to do with our words or necklaces or tattoos or anything else, but rather, the way we love. To love Jesus is to love people. That’s it.
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My name is Hallie and I’ve been at risk for Huntington’s disease for 22 years, 8 months and 13 days. Actually, I take that back. My name is Hallie, and I’ve been at risk for Huntington’s disease for 23 years, 5 months and 13-ish days. You see, when two people reeeeally like each other, sometimes they consummate their feelings and make a kid. When one person with a whacked-out gene pool and the another with a normal one do that, though, they consummate their feelings by making a kid like me. And upon consummation, the clock started ticking. What kind of kid am I? I’m a time bomb of a kid. I’m a big, giant question mark. You see, when my dad and my mom “made” me, I got parts of each of them. I got my dad’s left dimple and my mom’s wavy hair. I got her blue eyes and a golden ring around my pupil like him. But for all the genes I know I inherited, there’s one I’m not sure of. Somewhere in my DNA, on chromosome four, there’s a question that could be answered by a blood test. Do I have Huntington’s disease? My name is Hallie, and I’ve been at risk for Huntington’s disease for 23 years, 5 months and 13-ish days. You could say it’s been even longer. My dad moved to Brookville, Indiana when he was 11. My mom knew she would marry him by the time they reached the seventh grade. And the moment their childish eyes met, their futures would be filled with question marks. So would mine. The night before they wed, my dad told my mom of his risk for HD. She still married him. At 30, my parents had my sister, Jessie—their first question mark. Jessie was sick. She had a connective tissue disorder called Ehler’s danlos. It made a hole in her heart and some deep in her spine. She was sick for most of her life, until she turned 17. She was happy and well. And then she died in a car accident. She was never tested for Huntington’s. At eight years old, I became the last question mark. At eight years old, I didn’t know much. What I did know, though, was that death and uncertainty and Huntington’s disease were going to be inevitable parts of my life. I said I didn’t know much. I didn’t say anything about all the things I thought I knew. I thought I knew that I was safe. I remember driving home from my dad’s doctor’s appointments and writing “negative” on the foggy backseat window. I did know what that word meant. I thought I was safe. I thought that no one family could lose everything. Since then, I’ve seen parents lose multiple children and children lose both parents. I’ve learned that “safe” will never define anyone, including me. I also thought that I would find out just how safe I was at the age of 18. I wrote stories about it. One was from the eighth grade. In it, my father’s neurologist would walk into the room and smile. I would cling to my mother; my father wasn’t there. I knew he wouldn’t be. Then, I would hear the word I used to scribble on the foggy backseat window. And that was it. I’ve heard the word since then. I’ve heard the word leave a physician’s mouth and hit a family with naked assurance. One single word. I’ve heard its antagonist, too. That’s the one I felt in my heart. At 11, I thought 18-year-old me would be able to handle it. At 22, 8 months and 13 days, I know I couldn’t have. People always ask me why I haven’t been tested or when I will or if I’m ready. That question doesn’t bother me as much as the one that bothers most kids my age: “What are your future plans?” I don’t know. Kids I went to high school with are getting married. Some are expecting babies. I still sleep with a stuffed horse named Tater in a twin-sized bed. And I sleep very much alone. When you ask me about my future plans, I’ll tell you I want to be a neurologist or a neurology PA living in a white house with black shutters and rose bushes. I’ll tell you I’m going to live on the bay, 15 minutes from my mom at the beach. I’ll tell you my daughter, Poppy, will have wavy hair like my mom and me, and a single left dimple like the one my dad gave me, and that my husband will love me like my mom loved my dad. But if I really trusted you, I’d tell you that I have no idea what I’m doing. Every decision is pinned on one blood test. If it’s positive, I’ll live my life. I might not get married or have a little girl named after the nickname my dad called me, but I’ll live my life. I’ll love the people around me with intention. I’ll travel. I’ll be the best daughter and friend I know how to be. If I test positive, though, I’ll find out how I’m going to die. Theoretically, and I write this as I roll my eyes, I could get hit by a bus leaving my testing appointment. But all crazy what-if scenarios aside, if I test positive, I’ll die from Huntington’s disease. I can assure you, it isn’t pretty. But at least I’d know, right? If I test negative, my gosh, I’d go to med school or grad school. I’d be a doctor or a PA and I’d be darn good at it. I’d open my heart to falling in love and I would have my little girl with the funny name and left-sided dimple. I’d even adopt one, too. And I’d buy a white house with black shutters and plant the rose bushes even though I can’t properly care for plants. Want to know why? Because I’d be given a whole lifetime to kill and re-plant rose bushes! As many as I want! But it’s only 50/50, I remind you realistically. Then there’s a third option: never test at all. Live and love cautiously but with intention. Cling to hope. Remain a question mark. So, to test or not to test? I told you already; I just don’t know. You’re the one who smiles when you aren’t okay. I know you so well, better than you know yourself. You, my dear, are broken and bruised and hurt and smiling. You’ve heard people tell you that you can’t. You can’t get that job. You can’t get into grad school. You can’t. You can’t. You can’t. You’ve started to believe what the world has told you. Your grades aren’t good enough. You just aren’t smart. Your pictures don’t get enough likes. No one likes you. The dress you wore to your high school graduation doesn’t fit anymore. You aren’t attractive. The person you thought was your everything left. You can’t be loved. But you smile. Contrary to what the world might have told you, you’re really something special. I know I give you words a lot, but I really want you to listen to this one: worthy. You. Are. Worthy. Say it with me: “I am worthy.” I’ve been thinking about the meaning of the word a lot lately. What does it mean to be so unbelievably enough that you could be considered worthy? The more I think about it, the simpler the explanation gets. I’m pretty sure we don’t have to do anything. We don’t have to have good grades or look a certain way or love a certain person to be enough. We just have to be. That’s hard for you, though. It’s hard for me, too. We aren’t so good at marveling at our own existence. But what if I told you someone else marveled at who you are? What if I told you someone was so fascinated with you that they loved you for everything you’ve come to be? What if I told you someone saw your "C" in calculus as a trial that built an even greater tribulation, and by that, I mean current you? That last breakup? Yeah, they cried with you. That sucked. But you made it to the other side. That rejection email you got? They read it, too. That exam you failed was a tough one. That fight you had with your best friend wrecked you. They saw it all. He saw it all. And He calls you loved and cherished and treasured and beautiful and worthy. He sees your scars and your trials and the smile you wear in the midst of it all. And even when you didn’t feel Him, He was there. He gave you that smile, and He calls you a lighthouse of a human. It might sound silly, but hear me out. You might feel stagnant. You’ve been in the same place for awhile, and the waves are starting to get to you. But you keep guiding ships. You guide ships whether you want to or not. When you’re tired, you guide ships. When you’re heartbroken, you guide ships. You always guide ships. And when your light feels like it’s starting to dim, your Keeper changes your bulb. He takes pride in your existence. You don’t see all the ships you’ve guided, but He does. He sees the length of your light when you can’t see it at all. He stays with you out there. When the waves beat you from every direction, He clings tightly to you. The Keeper never leaves. Sometimes He’s quiet. He always seems quiet when the waves are the biggest. He’s holding on for dear life, too, though. And when the ocean settles, He comes to check on you, to make sure you’re still guiding ships. You are. You always do. But never alone. You smile whether you want to or not. When you’re tired, you smile. When you’re heartbroken, you smile. You always smile. And your smile is seen. Your effort is known. You are a lighthouse of a human, and your existence is enough. You can’t see the length of your light, but Someone can. And that Someone calls you loved and cherished and treasured and beautiful and worthy. "For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth." -Psalm 139:13-15 I knew my family was different from the time I was a little girl. My dad twitched and kept his hands in his pockets so no one would see. In 2006, my father was diagnosed with a neurological disorder called Huntington’s disease. HD is a genetic disease that causes degeneration of the brain until a patient eventually can’t walk, talk or eat on their own. The entire disease is the result of what I call a sort of hiccup in DNA. We all have four bases in our DNA: adenine, thymine, guanine and cytosine. People with HD have a bunch of CAG repeats. Usually around 40. And that’s how you get sick. Every child of a parent with HD has a 50 percent chance of inheriting the mutation. I don’t know if I’ve got it or not. I don’t know if I’m ready to know. I’ve got ink on my wrist reminding me that good or bad, positive or negative, God is greater. But I’m still scared. My fear of developing Huntington’s has manifested itself in all areas of my life. It’s made me feel more like a number than a person at times. It’s made me doubt, It’s caused me to question. It’s forced me to strive to be the most perfect person I can be in every aspect of my life that I can control. That’s why I created All the Things. All the Things You Are is a movement seeking to do something very, very simple: remind people of just how loved and beautiful and capable they are. None of these things are conditional. They aren’t based on how you look or what you weigh or what your DNA sequences look like. I want to alter our way of thinking until we finally shift from telling ourselves all the things we aren’t to reminding ourselves all the things we are. I designed the blue edition ATT shirt with Mile Tree Screen Printing, LLC with a clear purpose in mind. This shirt is not only meant to raise funds for HD research, but to empower every person who wears it, to remind them that they are whatever they want to be. This shirt is for the caregiver, for the HD advocate, for the sons and daughters at risk. This shirt is for every human being needing a reminder that they are stronger than the trials they face. You are kind. You are strong. You are beautiful. You are handsome. You are more than just a number. Yours is a story worth hearing, and I hope when you wear this shirt, you remember that. Because I am, you are, we are stronger than HD. Follow this link and use code ZZRF3 to get your shirt! Maybe this is the year you want to lose weight or raise your GPA or fall in love.
Maybe it’s the year you’re just happy to be here. Maybe it’s a year you’re afraid of. It could be the year you graduate and figure out how the heck to be a functional adult. I don’t know what year it is for you. For me, it’s the year I learn to like myself more. I spend a lot of time telling you how great you are. And, I mean, you are, like, really great. But I have a feeling you’re like me. You’re really good at telling others what they are to the world. You tell them they’re pretty. You tell them they’re smart. You tell them they’re enough. You tell them they’re treasured and worthy and loved. But what if you and I looked in the mirror and said something together: “I am pretty. I am smart. I am enough. I am treasured and worthy and loved.” Do it. I just did. And I saw some zits and scars and wet hair from the shower I just took. Want to know what else I saw? A girl who’s learning to love her zits and scars and messy hair and complicated mind. In 2019, let’s not worry so much about losing weight or raising our GPA’s or falling in love. Let’s fall deeply, madly in love with ourselves, me and you. About three months ago, I read something that altered my way of thinking. You’ve probably read it too, actually. Nashville blogger Savannah Locke kind of broke Facebook with it. “I heard it takes eighteen months for certain whales to be born, but butterflies can hatch in three weeks. ⠀ I graduated college in four years. My friend dropped out. Another friend took SO many college-level classes in high school, she graduated and had a job before she could celebrate with wine…” Read the rest, seriously. It’ll break you and make you think and maybe even love yourself a little more. When I read it, I had a sort-of epiphany. I messaged Savannah on Instagram, knowing well and good she probably wouldn’t answer. But she did. I explained that her words had spoken dearly to my heart, that I felt everything she said in almost a spiritual way. I told her about All the Things and my mission, and explained that I felt called to write about the same topic: timing. She responded with such kindness and support, approved, and offered prayer in the process. Like I said, that was two months ago. I’ve been wanting so badly to write this for so long, but my gosh, have I struggled with it. I’m 22. I’m not married, not dating, not even in a “thing.” The closest thing I’ve got to a relationship is my close and personal and baned connection with my organic chemistry textbook. But my high school classmates are engaged, and some, even married. A close family friend and new mother looked me in the eyes recently and told me matter-of-factly, “Wait. Don’t be in a hurry. Live your life now.” I spend most of my time worried that one day I’ll develop Huntington’s disease. Meanwhile, there are kids currently fighting cancer. I wonder how my potential diagnosis could affect my ability to be a parent. Some people physically couldn’t bear a child even if they wanted to. I’ve torn myself apart for a single bad grade. Yes, I’m announcing it: I got a C. My first ever undergraduate C. In organic chemistry. But the thing is, I had the luxury to do poorly in a class. And I have the luxury to try again. My organic professor laughed at my concern and told me something that will stay with me for the rest of my life: “I know administrators on the boards of admission at medical schools who failed this class. You’re doing fine.” What? The prestigious and intelligent and probably super rich upper echelon of society failed? Yep. And apparently, they did it pretty gracefully. I’ve decided that so will I. I love to write, which is why I chose journalism and Ohio University. If I’d stuck with my original plan of being a writer, I could have graduated college a year early. But I wasn’t content. So I chose medicine and left amazing opportunities for different ones. My fear has altered absolutely everything about my life. My relationships, my career path, my education. But I’ve done things in a way that will reduce potential destruction. And I’m happy with the decisions I’ve made. Those decisions have taught me more about timing than I could have ever learned otherwise. But my story is just one of many. The stories of others are the ones that inspire me. Of the six other stories you’re about to read, no two are the same. And that, my friend, is the beauty of it. You’re doing fine. _____ Donnie I’ve always had a special relationship with my Uncle Donnie. Even before my dad died, he was like a father to me. When I was a freshman in college, I almost lost my father a second time. Donnie was diagnosed with stage 4 throat cancer at the age of 54. He went through so much radiation that his skin broke and bled to the touch. I remember seeing my mom so broken and fearful of losing her brother. She stayed with my aunt and uncle during treatment. She was determined to see him through to remission. My aunt and uncle were willing to go wherever they needed to find treatment for Donnie. They went all the way to Chicago, sometimes staying for weeks. I have never seen more determined, faithful people than my aunt and uncle. And now he’s cured. He’s 57. “No remission, total cure,” he told me. “All my work, everything I had to do that didn’t get done didn’t matter. It was all about his time, not mine. I’m on [God’s] time, he’s not on mine,” he said. He told me being sick made him want to be here to give his grandkids something to remember. “I didn’t want to be forgotten.” You won’t be, Uncle D. _____ Hannah My friend Hannah is a miracle. She and her brother are the children of a father with Huntington’s disease, just like my dad had. The miracle of the two of them is in their genes. Neither of them are at risk for the terminal disease. Hannah’s parents decided to start the journey of family planning in 1995. They heard about the research behind PGD (preimplantation genetic diagnosis) via IVF (in vitro fertilization) at an HD conference. “In short, cells would be screened ensuring HD negative fertilized eggs to be placed inside the mother in hopes that at least one would attach,” Hannah writes. She told me that her parents decided it was time to start trying, and contacted their doctor. What she said next blew my mind. Imagine this phone conversation: “Dr. Quaid, we’d love to be a part of this research you talked about this past weekend at the conference”. Dr. Quaid in disbelief said, “Where did you hear about this?” They replied, “From you at the conference this past weekend!” Dr. Quaid responded with “I didn’t talk about the research this past weekend, I just got the information of this research on my desk yesterday!” Hannah writes, “My parents both heard the same thing that weekend. None of which was actually spoken. We are convinced this was such a God thing!” In 1997, Hannah and her brother Austin were born. They are both free from the HD mutation. _____ Katie Katie, a friend of mine, is 24. She has a masters degree in clinical psychology and plans to earn her doctorate in neuropsychology. She is absolutely brilliant. When I heard her story, I was shocked. Katie was 13 when she entered into the foster care system. Her father and mother struggled with addictions to alcohol and prescription pain medication, she told me. Her parents met in AA. She made big decisions long before my mind could have ever fathomed that kind of responsibility. “When I was 18, I made the most terrifying decision of my life to date – to go to college. I remember sitting in the financial aid office reeling because I was trying to figure out how to fill out a FASFA and all of the financial aid documents. I never thought that I would fully understand the difference between a subsidized and an unsubsidized loan. Then when I started, there were days that I felt like I had the weight of the world on my shoulders,” she writes. I met Katie at while I was at Vanderbilt interning in a neurology lab. She had come from Johns Hopkins and was just beginning her role as a research coordinator during my time there. I had never meet anyone with such a level head and good sense of humor. And she is so unbelievably compassionate. I believe that’s because of her story. “If I had to sum up the message that I want to spread,” she writes, “it is this: “The most amazing part about being you is that you don’t need anyone else to inspire you. You already have the most inspirational story of all – your own. You know the power and depth of your resiliency because you have already made it through so much already. Know that you are unstoppable, you are loved, and wherever you are, I’m rooting for you.” _____ Jessie My older sister was born with a spine as crooked as a roller coaster. She had an illness that hurt her heart and her skin and everything about her body. Ehler’s Danlos. As a little girl, she wore braces and bars and everything you could imagine that would set her apart from other kids her age. She had over 15 surgeries in her lifetime, and even spent six months in a full body cast. I never saw her cry. I never heard her complain. I only saw her grit her teeth and smile. At the age of 17, she was finally happy and content. She was beautiful. She always had been, but for the first time, she was beautiful and healthy. Then her Mercury Cougar met a wooden fence in the summer of 2005. Her funeral visitation was five hours long. In less than two decades, she’d had that kind of impact. _____ Dad My dad’s dad had Huntington’s disease. My parents married at the age of 25, three years older than I am now. The night before they wed, my dad told my mom of his risk for HD. She still married him. That’s what amazes me about my mom. She didn’t look at all afraid in any of her wedding photos. She wasn’t. She cared for him, feeding him and bathing him for years until he died. He was 54. _____ Us? I am 22. I have a lot of options. I’d like to think I have a lot of time. That’s pretty relative, but all things considered, let’s pretend I do. Nothing I will ever do will look like anything you’ve done. And vice versa. Our wavelengths are so incredibly different. Statistically speaking, there’s a fifty percent chance I die from Huntington’s disease. Assuming you’ve got the holy grail of all gene pools, you’ll probably die of old age. One of us will get married and have kids, and the other will probably get a cat and shack up with his/her mom. Then, again, statistically speaking, that one of us will lose his/her mom and be forced to find herself at the age of, let’s say 45. And that terribly tragic story will be a beautiful one. All of this is completely hypothetical, but it really makes you think and wonder how the heck we ever convinced ourselves that random you and random me should have the same story. Instead, imagine how beautiful you and beautiful me have such perfectly distinct ones. And that distinction is what makes this thing called life so stinking messy and ugly and pretty and perfect. Wherever you’re at, you’re doing fine. You are strong. You are capable. You are doing fine. Huntington’s disease is a genetic, neurological disorder that plagues nearly 30,000 people in the U.S. HD is characterized by a slow decline in cognition and physical ability. Sometimes called “the devil’s disease,” the illness causes a sort of dancing, known as chorea, in its patients. Within usually 10 to 15 years, HD patients lose the ability to talk, walk, eat and even use the bathroom unassisted. The science behind the illness can be described simply as a mistake in one’s DNA caused by a sometimes-misbehaving protein called huntingtin. Everyone has the huntingtin protein. HD patients; however, have a mutated form. As a result, their DNA is prone to a sort of stuttering in sequence on one chromosome in particular—chromosome four. The four nitrogen bases in DNA are adenine, cytosine, guanine and thymine. These sort of puzzle pieces alternate throughout the DNA of most humans, but repeat a particular sequence over and over again in patients with Huntington’s. Cytosine, adenine, guanine. Cytosine, adenine, guanine. Cytosine, adenine, guanine. This sequence generally repeats itself 40 or more times in HD patients. Yes, something as simple as a small glitch in transcription during the development of a teeny tiny baby can determine its entire life before it ever leaves the womb. Scary, right? We think so, too. That’s because we might have been those teeny tiny babies. __________________________ Megan I was 12 when I met Megan. I was attending the annual HDSA National Convention in Phoenix, Arizona, on a scholarship. I couldn’t have afforded to be there otherwise, and looking back, I don’t know who I’d be had I not received the funding. I met Megan there. She was 11. She loved to sing, took polish dancing lessons, and had a North Dakota accent unlike anything I’d ever heard before. She was the first kid I’d ever met who knew what Huntington’s was, and her dad was sick. Just like mine. She left Phoenix early and I didn’t know if I’d ever see her again. We stayed in touch through email until we just didn’t anymore. Six years later, I was staring at my phone while sitting on a creaky metal bed in a musty retreat center. My class had gone to Cincinnati for our annual retreat, and we weren’t supposed to bring our phones. I didn’t listen. I kept it glued to me for the entire retreat; I was waiting for an acceptance email to my dream school. I never got it. I did get something better, though. I had recently shared my HD story and was featured as one of HDSA’s “Faces of the NYA.” I didn’t think much of it until I received a Facebook notification from a girl with a familiar face. From North Dakota. That’s the night I re-met Megan. We’ve never lost touch since. Mikayla I remember sitting across from Mikayla at an outdoor table at Cheddar’s. That’s where our mom’s always met to grab dinner. Mik’s dad was in the early ages of HD, and our local social worker connected our moms. My mom had just finished her HD journey with my dad, and her mom’s was just beginning. After about a year of our mom’s knowing one another, they decided Mik and I should meet. One week before I began my freshman year of college, I met a tiny ball of everything good and hopeful and bright about the world. And my heart broke for her. I knew that she would lose her dad, too. I remember wondering how on earth she would do it. As hard as it was for me to face Huntington’s, I’d never known anything different. My dad was always sick. From the time I was born until the time he died, he was sick. I honestly believe that had I ever known the version of my dad before HD took him, our journey would have been even harder. Because of that, I was afraid for Mik. She knew her dad. She knew him and she knew she was going to lose the version of him that she held so closely. I have learned so much from Mikayla and her journey. She is the kind of brave I want to be. Her dad is the kind of warrior I hope to be if I test positive. I’ve always viewed Mik as a David. Her Goliath is Huntington’s, and her stone is her courage. Raegan I thought it would hurt more. My first tattoo, I mean. I’d wanted one for a while, but I’d never been brave enough to do it. Raegan thought it was a good idea. I remember walking through the dark alleys of the guts of New Orleans with her, thinking how cool it would be to be cool like her. My god, did she light up a room with her blunt bangs and witty sense of humor. She doesn’t have bangs anymore, but she’s still pretty dang funny. What fascinated me most was that she wasn’t afraid. Not of the dark, not of the sketchy streets we walked down, not the tiny tattoo shop we went to, not even Huntington’s, it seemed like. We’re all a little afraid of it, though. We all had time to be afraid and to accept and to process. But that wasn’t really the case for Raegan. HD reared its ugly head at her for the first time when she was a freshman at Ohio State. Most of us were learning about the Krebs Cycle or grammar or how to debunk our beds without asking for help. Raegan was learning that the trajectory of her life would be far different than what she could have ever imagined. Her father and uncle were both diagnosed with Huntington’s that year. At 18, Raegan learned that she and her sister were both at risk for a disease they never knew existed. Raegan will tell you she was scared. I think she was brave. __________________________ Megan, Raegan, Mikayla and I call ourselves the HD soul sisters. We found one another in a roundabout way, but we found one another nonetheless. I met Megan, Mikayla met Raegan, and eventually, we all met each other. Each of us has a fifty percent chance of inheriting HD. For a long time, I thought that statistic just made us a number. Now, I think it makes us warriors. We might have been the babies whose lives were decided before we opened our eyes, but the beauty of the uncertainty is how we will choose to fight back. Each of us has a different story. I am so fascinated by the stories of my sisters, and I think you will be, too. Here they are. How are you affected by HD? Megan: When I was nine years old, my dad was diagnosed with Huntington’s disease. He battled this disease for six years before he passed away in 2013. I’m currently at risk for inheriting HD. Raegan: My grandfather passed away from HD in July 2017. I found out that my dad and uncle had been diagnosed with Huntington’s disease my freshman year of college. As a result, my older sister and I are both at risk of inheriting the gene. Mikayla: My dad has HD. I am at risk as well as my two younger sisters. How was being at risk for HD altered your life? Megan: Being at risk is such a hard thing to explain. I don’t think about it every day of the week. It’s rather a thought I carry with me, and makes itself present when I’m overwhelmed with life. I normally push that thought to the back of my mind, but recently I’ve tried to acknowledge it and give myself some time to think. Raegan: Oh boy, in a lot of ways. I was in such a transitional phase, having just started college when I found out, that it really gave me a lot of anxiety. I’ve struggled quite a bit with processing emotions and fears related to HD and it’s affected my relationships with people and the way I view the world. At the same time, my at-risk status has made me value life and time with people a lot more. I’m excited to do things that I’ve always wanted to do and share things with people I love. There’s a lot of uncertainty in the future; that’s inevitable. The people that are here in this moment are treasures. So I’m trying, sometimes failing, to not let the fears of the future affect the value of being present. Mikayla: It makes me think a lot more about my life. It makes me want to do everything I can before I potentially test positive. I think it’s given me a “there’s no time like today” mindset when it comes to doing exciting things that are out of my comfort zone What scares you the most about potentially testing positive? Megan: Everything. Watching my father deteriorate from a disease I could possibly get is absolutely terrifying. I think there’s a lot, financially and mentally, that weighs on the testing process, which isn’t something I’m personally ready to face yet. Testing positive will always be a fear of mine, but I’ve learned that I can’t go about my life worrying about the “what-ifs”. My dad wouldn’t want me to live my life like that. Raegan: There are so many emotions surrounding HD that it’s hard to briefly summarize. But, ultimately, my biggest fear is knowing the pain that my loved ones would experience from a positive diagnosis. Second to that would probably be not being able to afford the medical care that I would need one day. Mikayla: Being a burden to the ones I love. What gives you hope? Megan: The people in my life give me hope. My mom, my boyfriend, my family, and my friends. They’re my biggest supporters and I know that they’re always going to be there for me regardless of what the future may hold. There’s so much to enjoy in life and they truly help me remember that. Raegan: Research!!! And I have a lot of hope from knowing so many people are passionate about finding a cure. Mikayla: Science gives me hope. The people who are going through the exact same thing give me hope, too. And hope has grown over the past few years so it’s encouraging and it feels like we are actually allowed to have hope. What helps you move forward? Megan: What helps me move forward is knowing there is more to my life than just how Huntington’s disease has affected it. HD has taken a lot from me and not having my dad here with me is one of those things I would change in a heartbeat. HD is not the only thing in my life, but it has definitely shaped me into the person I am today. Moving forward after loss is so hard. There’s always going to be a part of my family missing. There will always be the possibility of inheriting HD. There will always be something trying to hold me back, but being resilient and acknowledging those things are part of the healing process. I don’t think I’ll ever be healed, but I’ve learned how to live with the grief and pain that I carry with me. Moving forward isn’t a one-step process. It takes time, patience and acceptance. Raegan: My family and friends. My soul sisters that encourage me to fight. And that fact that we can do hard things Mikayla: Talking to people who understand me. Knowing that HD isn’t forever. Want to know more about HD? Check out these websites for more information: Huntington’s Disease Society of America: https://hdsa.org/ HDBuzz: https://en.hdbuzz.net/ Huntington’s Disease Youth Organization: https://en.hdyo.org/
The Storm What a life. The pain is so deep that sometimes you feel like you are about to drown. Waves of crashing heartbreak over and over. You wait for the storm to end and it rages on, unabated in its ferocity. And sometimes. Even while the storms crash and the winds roar. You find your reason to keep going. You remember why your heart is beating. Why you take every new breath, why you continue to swim. It’s them. The people that you love. You think about their faces, you hear their voices. They are the stars than shine, just above the storm. Their bright shining Love is just on the other side of your pain and heartache. And so, you continue to struggle. Because Love is on the other side of the storm. Little Girl The perfect family Mother father and two girls Active in church, devoted to each other Parents loved their children Children loved the parents Little did they know That heartbreak was around the corner One more girl came into the family Only added to the love Father began to be a little different Little things that didn't add up Life went on as usual Years later another little girl Came Into a family of love Little did she know The father that she knew Was not the one that began Now that girl is a little older The love is still there But one member is absent In a way that makes it all The harder to bear Father is here in body But is no longer the same Thinks only of his comfort Remembers not the love he knew It’s been years now And the family is not the same Father has finally fled the earthly plane His struggles finally to cease That girls hangs on to the memories The love that they had keep Knowing that someday In the blue sky above they will share An eternity of time Just him and her forever, no disease To the Women To the women who love Even when it's hard, To the women who hope Even when it's dark. I see you. The heartache cannot take your love, The shadow cannot dim your light. You are my favorite thing. I’m not a doctor. I’m not an expert. Actually, I’m really just a 22-year-old girl who knows very little about anything outside of whatever textbook my nose was last in.
But I do know what it's like to feel alone and unworthy and tired. I’m guessing you do, too. Maybe your darkness in life is depression. Maybe it’s anxiety or an eating disorder or OCD. Maybe it isn’t a diagnosed mental illness. Maybe it’s the constant gnawing feeling of inadequacy. Maybe it’s the sense of disappointment you feel when you look in the mirror. Maybe you’re just overwhelmed with the trials and pressures of being a human being. Whatever it is, this is for you. Every single piece of you: the good, the bad, the ugly. Read carefully. _________ Dear you, I’m not writing this just to make you feel good for a fleeting moment. I’m not trying to make this letter picture-perfect enough to end up on a Pinterest board or your Aunt Judy’s Facebook wall. I’m just being honest. I am so completely and utterly blown away by you. Look at you. You are a living, breathing testimony. You’ve made it this far; you’ve made it to today. And we both know you didn’t just get here by coasting. You’ve been hurt. You’ve been scarred and broken and jaded. But you made it here. And maybe there were days that made you doubt the significance of your presence here. Maybe you wondered what the world would look like without you in it. Believe me when I say that a you-shaped hole in this world is one that can’t be re-filled. When I see you, I see something so undeniably miraculous that it makes my head spin. I am so dazzled by you. Your hair and your smile and your fingers and toes and your laugh. It’s your mind that really gets me, though. There’s a barrier of a little over 6 centimeters separating the outside world from the inside world of your brain. And my gosh, is your world something to behold. For all your worrying and doubting and sadness, there’s a brilliance tenfold that of this world. But it does make this one a little brighter. To take it away would be to dim a light that couldn’t be replaced. Remember that. And it’s not just today that you’re allowed to feel the way you feel. It’s every day. Today is the day you’ll see the retweets and shares and reminders, though. If tomorrow feels lonely, I’ll still be here. You might be reading this thinking that I don’t know you at all. Maybe I don’t. Maybe I do. Stranger or friend, I mean everything I’ve said about you thus far. If you're reading this, you’re here. You’re living and breathing and here. Stranger or friend, I want you to stay here. Stranger or friend, I’m in awe of you. Thank you for existing. All the Love, All the Things You Are |
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