HDYO Camp: Therapy Through Unity

The Huntington’s Disease Youth Organization is a group that has successfully created a safe place for young people to learn and grow together through their connections with HD. The camp allows youth from across the country to come together and create life-long bonds, leaving with the knowledge that they have an endless amount of support and love whenever they need it. The four day experience provides a place where the youth get to live care-free, even when disease has taken over their lives and forced them to mature faster than other people their age. It’s a time of peace, empathy, joy, and freedom, as caregivers, the at-risk, and the tested are able to take a break from their heavy burdens. Most importantly, campers are gifted with access to time for self-care and relationship building-a type of therapy that helps them grow and provides the tools that they need in order to return to the harsh reality that lives back home.


Both Melissa and I feel extremely blessed that we were able to attend camp this year. The first HDYO event held in the U.S. during 2015 was our first time attending the European-based camp, and it’s also where we originally met. Because of our previous attendance, perspectives that we present about our experiences this year may come across as completely different in some ways compared to what first time camper’s experienced this year.  We were both beyond ecstatic to be able to attend camp for the second time in a row, and during our four days there, we got to participate in so many different activities that gifted us with new positive outlooks within our struggles in dealing with HD. We also got to create new bonds with so many people who dealt with Huntington’s Disease on a daily basis as we shared our stories and gained precious insight on everyone’s different perspectives. We hope that you are able to read through our synopsis with open minds and understanding hearts, as some pieces of our stories were very difficult to share. We love you all with our whole hearts, and we are beyond thankful for the experience that HDYO provided. Enjoy!

Leah: I was extremely disappointed when I found out that I would not be able to attend camp this year, but I understood that there were many young people who needed to experience the healing support system that HDYO camp provides. At the last minute, however, I received an email stating that someone had cancelled their visit, providing an open spot for me to attend. Without hesitation, I jumped on the bandwagon, despite feeling that the age of 23 was too old to be considered “youth.” A couple of weeks later, I hopped on a plane with six other Texas natives who where affected by HD, and we bonded instantly.

Melissa: When applying for camp, I had suspicions that I might not be accepted again this year because I had attended the year before. The staff running the event knew I would be going through my testing process this summer, and that I would need support despite what my results presented. I encouraged my cousin to apply this year, so I knew my acceptance would come along with hers, as her parents did not feel comfortable with her going alone. When I attended last year, I felt that being 20 years old was a good age to be accepted as a camper, though I had never attended any kind of summer camp before. I applied again this year before my test results came in- before I even officially started the process, and I felt my age wouldn’t be a barrier for any reason. However, as the week of camp approached just a few months after my positive results came back, I felt that I had aged years in just two months, so I was nervous to go back. I put off planning and packing for the event as long as I could, and when my cousin joined me in Columbus the night before our flight, I still hadn’t been able to grasp the fact that I was going back.

Leah: I was beyond ecstatic when I arrived at camp. The nostalgia that came with breathing in the fresh Maryland air reminded me of my great experience from the year before. For the first two days, I met some amazing people from across the country who shared in the same struggles that I dealt with every day. The camp split us into groups so that we could talk more intimately about coping, advocacy, caregiving, and making the best out of our seemingly hopeless situations. We all shared our stories with each other, laughing at the good times and crying through our hardships.

Melissa: The instant I arrived on site, I felt a sense of relief and calmness that I had left at camp last year. The water, the sun, the fresh air, and the sound of birds peacefully took over my ears and lungs. I was immediately happy to be back at the place that forever changed my life exactly a year ago. However, I did not feel prepared to talk about the events that happened to me during the year that had passed. I felt entirely disconnected from my own mind; it was as if my body was back where it belonged, but my mind was wondering elsewhere. It took me all night and a bit of the next morning to get back into the flow of camp and feel like I was actually all in one place.

Leah: On the second day, our group decided to discuss the stages of grieving: Denial, Anger, Bargaining, Depression, and Acceptance. I found it ironic that this topic was brought up right after I had written a poem on these exact steps when it came to finding out my positive test results.

As everyone else silently wrote an excerpt on their loved ones with HD on foam shapes cut from nature-inspired patterns, I reluctantly addressed the similarity of our session with the theme of my poem. I asked if I could share it with the group, and everyone eagerly agreed that I should read it out loud.

I was nervous, as the depth of my declaration was very personal and unseen by the world at that point, but I decided to read it anyways.

As dramatic impressions spilled out with every spoken word, more and more members of our group began tearfully mourning in empathy, and guilt bubbled up inside of my chest as I witnessed hearts breaking with my story. Some ran off before I got to finish a poem that shed hopeless rhetoric and a sense of tragedy within its beginning, and they never got to witness my conclusion that presented the correspondence between our struggles and hope, what some might call a happy ending, as the last line claimed:

“I will march in the infantry of empathy, and help others stand with honor.

‘Embracement,’ seemed appropriate for my stance on this overwhelming illness

And I will finish this race with every ounce of strength I have.

My name will be known as Fearless.”

I have to admit that I began to feel slightly overwhelmed with grief as my eyes met the heavyhearted gazes of our group members. They were all so young, so new to the world, and already so burdened. From that point on, I decided to take on a vow that resembled silencing myself so that I could listen to their stories. I wanted to make my time at camp a season of absorption; I wanted to feel every aspect of my camp member’s stories so that I could obtain a clearer sense of empathy in order to uncover a deeper part of myself that would be able to provide hope for those in need.

Last year, when we were split into our groups for discussions, I was so elated to have people surrounding me who knew exactly what I was going through. I feel like I really got to pour out pieces of my heart that had never been exposed before. I had a sense of urgency to get my pain out and receive answers to questions that I had always been too scared to ask.

This year, however, I found myself quietly observing my group and soaking up all that they had to say. After the newfound sense of my peers heavy-burdened reality, I found myself mourning relentlessly, which caused me to feel a little out of place as I tried to navigate through my perilous thoughts, tirelessly attempting to find something solid to cling onto. I desperately wanted my time at camp to be full of joy and lightheartedness, but I couldn’t seem to take control of the misery in my mind.

Melissa: I knew I had been holding a lot in since I discovered my positive test results in June, and I knew that I could easily become a ticking-time bomb in this kind of setting, so I stayed quiet as long as I could during the morning sessions. Finally, during one of our group discussions, I decided to talk about my boyfriend and the sort of separation that had grown between us since we both attended my test results only two months earlier. Though the distance in our relationship is not physical, there seems to be tension in the way we are both trying to re-navigate our lives towards a healthy future together. The few words I attempted to get out ended up leaving me in a weeping mess of tears. In the moment, it felt good to get out, but essentially left me feeling separated and distant from camp once again.

I felt that no one else in my group could relate to that specific area in my life, and after crying for a few minutes, I realized I had to pull myself together. I knew that I did not really need to get my worries out as much as I needed to feel important and useful for the other campers who may have been thinking about testing, or wondering what the process was like. In that moment, I decided to dedicate the rest of my time at camp to providing support and guidance for other campers rather than using my time to improve myself. I was not the oldest camper there by any means, but having tested so recently, I felt extremely mature and much more aged than I was last year, and that put me in a position that I felt needed to provide guidance rather than seeking solace for myself.

Leah: On the second night, the camp held a bonfire at the edge of the lake. We were all given a piece of paper to write our greatest fears on, and when we were ready, we could walk up to the fire and throw in our pieces of paper, watching our worries fade into nothing but ash and smoke. We had the option to either toss in our fears silently or share them out-loud. The year before, I burned my fears away silently, but this year, I wanted to announce them to the world so that others might be able to hear and relate. I wanted to wait until the very end, but after about five minutes of silence, one of our leaders began to announce that the event was over. I quickly stood up, interrupting, desperately exclaiming that I wanted a chance to go. I felt embarrassed that I had waited so long, but I took my turn anyways.

I shuffled over to the fire, standing so close that stray embers floated around my body as flames licked the ground around my feet. I took a deep breath, proclaimed the terrors that haunted me constantly, and then hurled my crumpled piece of paper into the midst of the fire. I watched it burn and disintegrate into dust on the ground, and I promised myself that I would try and leave my fears there where they belonged.

I watched as others slowly did the same thing. My heart swelled with pride, mostly because I was familiar with the kind of courage it took to stand up in front of everybody and spill your soul. The event was therapeutic, to say the least.

On the third day, I was very silent during our group sessions. I wanted to grieve for every soul at that camp, and became exceedingly downhearted with every story I heard.

I have never been the type of person who is good at coming up with words to speak out-loud (which is why I write), and all of the sudden, I realized that I would never be able to come up with any combination of words that could sufficiently empathize with the pain of our youth. My soul sort of curled up in anguish, and I spent most of the third day in our cabin, attempting to distract myself from reality.

It sounds selfish, I know.

Melissa: Our third day of activities involved group sessions divided by age. This group felt a lot more comfortable to participate in, as the problems I was going through in making life decisions centered around school, my career, and my future family were all constantly haunting me in the back of my mind. In the morning, again, I was feeling pretty disconnected and didn’t speak up much. There were plenty of things I wanted to say, but I couldn’t find the words or the gumption to say them. Instead, I sat in silence and absorbed everything my peers were experiencing.

After lunch, I felt I had spent enough time sitting back and listening and decided to truly speak up for the first time all weekend. When the girls in my group began discussing their thoughts on testing, I finally felt like I was in my zone and easily able to provide my input and support. I discovered then that talking about my situation was not hard, especially when I knew it could be helping people. I realized I could find and build strength off of sharing my experience and knowing that my story could help someone else create their own.

After that session, I was truly relieved and empowered from the entire weekend. I felt like I could leave camp knowing that I fully participated in the best way possible for myself and my current situation, and I believe I was successful in helping the other campers around me. I discovered that despite my initial fears and separation from being at camp, I found a way to make my time there useful for others while feeling like I spent my time doing something that helped me feel better, too.

Leah: On the third night, we had a speaker from South Africa named Lysle Turner come in to speak about his journey of climbing Mount Everest. During his first attempt, an avalanche wiped out 90 plus people at his camp, but he was fortunate enough to survive. Within the same year, he began his climb to the summit all over again, facing the deadly negative temperatures, the risks of terminal downfalls from the pressure of the altitude, and most destructively, the waging of a war in his own mind as he relentlessly trained his thoughts to fight through the negative voices that whispered in his ear during the many days he spent in silence.

As he spoke, I held back the tears that my body had been longing to shed as a new sense of passion and courage began to emerge from places that had become numb and barren for quite some time. I felt my heart began to beat to the rhythm of hope once again, my pupils dilating in wonder as he displayed pictures of himself finally at the summit, planting a flag on top of the world with the names of 200 people who had suffered from HD.

I believe that I became stronger in that moment as I watched his seemingly impossible dream emerge victorious, despite the overwhelming risks that his climb presented.

Suddenly, I wished that I hadn’t hidden from my emotions during this trip. I felt as if I had missed out on some amazing opportunities to bond with my group and the others at camp, but in my heart, I knew they understood.

Melissa: Although I felt more disconnected from other campers and struggled with my emotions this year, I found that each person I talked to made me feel so proud to be a part of this community. I did not reach out as much as I did last year, and I made less of an effort to build strong connections. Part of me regrets just sort of floating through the first two days of camp this year, but despite my own shortcomings, I found that each person I talked to made me feel loved, and every person I met had a story or an attitude that I could take back home with me to use as inspiration during my hard days.

Lysle Turner’s talk about his 60 day voyage to the summit of Mt. Everest was extremely inspiring. His story motivated me to always attempt to be fearless in this fight, but also to remember that fear is natural in a world like this one. And when those fears begin to creep up, we must be aware that there are always going to be more people who support us through the hard times, the “earthquakes” that unsettle us, and encourage us to keep going.

Just like Lysle’s story, there were so many young kids new to camp this year that were beyond inspiring in the same way. I met a sixteen-year-old girl who had given up so much and made huge sacrifices every day to care for her mom in a way I had never experienced, yet her smile and laughter was contagious and beautiful, filling the entire space that surrounded her with joy. I met sisters who dived right into the community after learning about their mother’s illness, and had fund-raised an insane amount of money for the HD community. There were people who had known about Huntington’s in their family for 16 years, and some who had learned about their parent having it only a few months ago. There was a whirlwind of differences in all of us, yet our ability to bond and share and understand was what made my experience at camp so rewarding It is what has truly inspired me the most.

Leah: After Lysle’s speech came the closing ceremonies, which is always my favorite part of camp. Every single person got called up and recognized for their unique attributes. The whole room cheered for every camper, applauding their accomplishments and spreading so much love and intimacy through little words scribbled on a piece of paper.

Everyone felt special that night.

Afterwords, the campers moved to the mess hall to dance the night away. No sadness, no mourning, and no shedding of tears. Just a group of people who bonded in a matter of four days over a horrific disease, rocking out together and having the time of their lives.

It was beautiful, renewing, and a breath of fresh air.

Melissa: Our last morning together consisted of packing, eating a quick breakfast, taking pictures, saying goodbye, and making lasting memories together before parting ways on our separate buses to the airport. Before we left, we got to hear another guest speaker, Jeff Carroll, who came to camp last year. Dr. Carroll is a researcher in the Huntington’s field, and he has tested positive for the gene mutation himself. He and his colleagues have made huge leaps in our destination for a cure. His story, his positive outlook, and his motivation were all exactly what we needed to end our time at camp together.

Leah: The type of bond that HDYO provides is one that will live on forever. It’s where I met Melissa, opened up to strangers who are now life-long friends, and found a sense of passion that I thought had disappeared long ago.

In four days, your life can change. Ours did.



Our Symbol, The Octopus

By Leah Barker & Melissa Fern

I fell in love with the ocean the first time I saw it. Its vastness, its depth, and its mystery have always astounded me. I love the blueish hue it gives off when it’s in its purest form, and sound of the waves crashing against the shore. I’ve always considered my life to be a metaphoric picture of everything that the sea represents: How it’s unpredictable like its hidden undercurrents, incomprehensible like the undiscovered creatures that hide within it’s depths, and beautiful like a sandy beach whose horizon ends in a pink sunset that seems to drop off at the edge of the world.

Our soul is an ocean, even though we are afraid of its deep waters and stormy waves. Sometimes in life, we need to embrace our fears for the purpose of overcoming them and taking hold of everything that scares us so that we can control it rather than letting it control us.

For that reason, we let ourselves venture out into the deepest parts of the sea. It makes us feel alive as we dangle our feet beneath a depth that holds a world of it’s own-a world full of curious creatures and carnivorous creations.

That is where we found our Octopus. He goes by four names: Huntington’s Disease, Mental Illness, Tragedy, and Hope.

The Octopus holds our secrets, much like the ocean, and mysteries of individual depth. He is an active predator, venomous in nature, and fierce in protecting his home, attacking anything that threatens to take away who he is and what he’s built.

He is also known for his skillful escape tactics and ability to regenerate. If a tentacle is ripped off, he is able to grow another limb that is just as strong as the one before.

The Octopus stands for everything we are. We are warriors, fighters, and unstoppable when we realize and accept what we are truly capable of.

When we inevitably lose a part of ourselves during our battles, we are able to regenerate the pieces that have been torn off and devoured by our enemies. We learn to fight quicker and sharper, growing stronger and more venomous after each opponent knocks us down.

We are each individuals who hide inside the Great Mystery of the ocean. Though we have torn through tragedy, mental illness, and disease, each of our stories are different. Though our struggles may seem similar, they are all unique to who we are. Nobody has been in our exact shoes or walked the same path, therefore our stories must be told.

After camouflaging itself inside of his habitat, The Octopus eventually emerges, displaying his true natural color and design to be glorified by the ocean’s eyes.

We are choosing to do the same.

Though we named The Octopus after some very heavy burdens that life has the ability to hand us, we choose to embrace it and wear it as a symbol to show off the scary parts of who we are…and set out to wage war against anyways, head held high.

This is the part of our Octopus that we call hopeful. We can fight, wrapping our tentacles around our burdens tighter and tighter until they can’t breathe any more.

We can do all of this using what we named our octopus: Huntington’s, Mental Illness, and Tragedy, and when we emerge victorious, we call him Triumph.

We are Capturing The Corners. We are The Octopus. We are Hope.



{our tattoos}



Leah’s (Soon)

FullSizeRender (33)


Same Struggles, Different Doctrines Pt. 1

I am a Christ follower and this is primarily a Christian-based site. As many of you might have seen in my former blog posts, I believe that Jesus came to Earth in human form and died for all of our sins, and I love Him. Don’t run away yet! This is the reason why I have decided to share a post on both Christian and Atheist views when it comes to how Melissa and I were raised, how we are coping with Huntington’s Disease, and what we expect in the afterlife. I believe that it is good to be educated on other religions so that we as Christians are not blindly trying to lead others to Christ in our ignorance of what they believe. I want everybody to have someone to relate to whether they believe in God or not, as empathy and love are two aspects in this life that are desperately needed to be shared and received. With that being said, Melissa and I will be exchanging our religious and non-religious journeys through our backgrounds, hardships, and even our stance on suicide. I hope you are all able to relate in some way and obtain a form of rest in your weary journey of soul-searching. We love you all no matter what you believe in.

Our backgrounds:


As early as I can remember, my family and I went to church every Sunday. I think back to sitting in Sunday school every week with all of the other kids around me memorizing the bible verses just like we were told. I was in the church’s kids choir, and I even did a Christmas performance in sign language. We often had people over or went to other members houses for communion, and once I was old enough, I attended Wednesday night AWANA (a Bible study program for children and teens) every week. I remember my mom worked for the church daycare and my dad went to Cambodia for a mission trip. We prayed before every meal, we dressed up for Easter and Christmas, and God was part of our lesson plans in school. Our family was the type that made church and God a part of our every day lives, not just every Sunday. With all of our routine, one would probably assume that I would have turned out “all right.”

At about 6 years old, despite being so involved in biblical practices, I distinctly remember having questions about some of the “facts” presented to me in bible stories, and thinking that it was ridiculous that we spent hours each Sunday morning memorizing a few lines from the Bible. My beliefs and behaviors went back and forth based on who I wanted to impress that day, and I knew how to manipulate things so people would be impressed with my intelligence and memorization. Achieving awards in my AWANA group became a game of showing off how smart I was rather than a symbol of my dedication to Christ.

Eventually, one morning in Sunday school, I remember telling one of the helpers that I was sick of memorizing the verses and that I thought it was stupid. I wanted to quit AWANA and stop going to Sunday school. Even as a young kid, I didn’t really know what I believed in, but I knew something seemed “off” about Christianity and that I wasn’t going to “follow the leader” when it came to my faith.

Then, one night when my mom was tucking me into bed, she began explaining to me what baptism was. We had an intense conversation (especially for a 6-year-old) about Jesus accepting me and taking away my sins, and that it could only happen if I asked Him to be in my heart and dedicate my life to Him. I had friends getting baptized soon and I felt entirely left out. That was the first time (and honestly probably the only time) in my life that I truly feared going to Hell while the rest of my loved ones spent eternity in Heaven. I begged my mom to help me ask for forgiveness, so she knelt down by my bedside and told me what to say in prayer. A few weekends later, I was baptized at our church in a flowery dress, and my mom gave me the most beautiful cross necklace afterwards. I remember being elated, filled with joy and power, and feeling like I finally fit in and knew what was “right.”

Then disaster struck my family. My grandpa with Huntington’s Disease passed away from a heart attack. My dad tested positive for HD too, followed by a few of his other siblings. Then the terrorist attacks of September 11th caused my dad to lose his job with the airlines. We went bankrupt and lost our house that sat in a beautiful neighborhood in North Carolina. And at 7 years old, leaving all of my friends was the worst possible thing that could happen to me. I hated my parents and I hated God for putting me through all that pain. I couldn’t comprehend why He would hurt me like He did.

When we moved to Michigan, things seemed better, as my dad could qualify for Social Security Disability Income and I was able to grow closer to my extended family. Michigan had a lot to offer, but it didn’t have a church that we felt comfortable in. My parents marriage began to crumble in front of my eyes, with increased arguing and more time spent apart. Eventually, my mom asked for a divorce and moved twelve hours away. Why would God want to put me through even more hardships than I’d already had?

For a few years after my mom left, I connected Christianity with who she was, as she was the more outwardly religious parent, but all of her religious practices pushed me away from God even more. I prayed and prayed for answers, begging and crying for an explanation for all of my questions, but all I got in return was silence. If my mom was such a dedicated person of God, how could she be okay with divorcing my dad who was recently diagnosed as disabled? I remember The Bible saying not to get divorced, so where did that leave us? I wanted to love my mom, I wanted to understand why and how she could leave my dad. Eventually, it became easier to process all of our struggles when I didn’t consider her or myself a Christian. That was the first time I truly allowed myself to be okay with stepping away from Christianity, from prayer, and from believing in Jesus.


Like Melissa, I was born and raised in a Christian household, however my journey started off rocky from the very beginning. My parents struggled through a somewhat unclean divorce when I was about four and my sister was three. It was decided that we were to be sent off to live with our first-time single mother who was (understandably) depressed. We had an extremely tough time dealing with her alcoholism as we got a bit older, but we were still far too young to try and change anything. Because of my mother’s problems with alcohol, we were again sent off, but this time it was to live with our dad and a very abusive stepmother. We stayed with them from around the age of  8 to 15. The whole irony of my religious situation is that I came to know Jesus, and I mean really know Jesus, in the midst of mistreatment and severe loneliness. My stepmother was constantly hanging the authenticity of our salvation above our heads every time she deemed something as simple as forgetting to take our vitamins as a “Blatant lie,” citing Proverbs 12:22: “Lying lips are an abomination to the Lord.” 

Oh, the faith of a child (or young adult). The sum of our stay while in our dad’s custody mostly consisted of going to church and church-related events, which I fully enjoyed. I came to love the Lord by being in the midst of the youth organization at our church, who I considered my “real family” at the time. The love, support, and grace I received from my friends and mentors became a reality I had never experienced before, and I wanted to be able to lead by their example. God then opened my eyes to the filthiness of my sins and the boundlessness of His grace and love, and I fell head-over-heals.

I grew up within a broken household: abused, isolated, and confined to my room after my extensive list of chores were done. I was never alone, though. Jesus was my best friend, and I was completely satisfied with sitting on my bed, reading the Bible, and praying to Him. He never once left me alone during those hard times. He was my hiding place and the love of my life, my Refuge and my Beacon of Hope.

One night, I was sitting on the edge of my bed, begging God to make my whole life a story that would reflect who He was in its purest form, and then I came across 2 Corinthians 12:9-10:”But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” So that became my prayer: I wanted to become the weakest, endure the most persecution, and live the most difficult life one could possibly live so that I could bring Him glory. Well, He definitely handed over the suffering part, but things changed as I got older. A lot of things.  

Our struggles with religion:


I made a new best friend in early middle school who was always talking about how great her youth group was, so I decided to go with her and try things out again. I remember having fun during the youth group sessions, so I decided to join her for a Sunday service the next weekend. During the Sunday School session before the real service, six or seven of us were all given random periods in time and told to draw a picture that represented it. I was given something crazy like 10 billion years ago. My 11 year old, non-Christian brain decided to draw dinosaurs, large plants, and an asteroid falling through the sky. Of course, I was first to present and had to describe what I drew. The two Sunday School leaders spent the rest of our time explaining to me that dinosaurs never existed and that the beginning of time was with Adam and Eve. The others didn’t get a chance to present their drawings. I had no idea how to comprehend what they had just told me, and the rest of that Sunday morning felt awkward and uncomfortable. I felt entirely lost and pushed away from Christianity once again.

Towards the end of middle school, after a few years of depression without God and finding a boyfriend whose mother I wanted to impress, I decided to join a church in the area again. I mostly attended the youth group, but the more comfortable I became with the people there, the more desperate I was to find purpose in what I witnessed so many other people confiding in. I started regularly attending Sunday services and sat quietly as I listened. I sang loudly as I attempted to reach up to God, and prayed silently for answers to my questions. I spoke with counselors and others who knew my struggle who wanted to help me find faith in Jesus again. But eventually, I stopped singing, I stopped praying, and I stopped going to the church services. Everything that was preached to me and everything that the pastor tried to convince me of only seemed to push me further away from what I wanted in a “higher being.” That was when I decided that if I was going to believe in God, I was going to do it my own way and that religion had it all wrong. I felt I needed a relationship with Him, but no church I went to and no person I talked to seemed to be doing “it” the way that I wanted to be doing it.

That’s when I started praying every night. I would pray for hours at a time and would continuously wake myself up if I didn’t finish my thought as I dozed off. Each night, I got out every single concern of mine in extreme detail and begged for some guidance. I thanked God for all He had given me, for all I had left despite what I felt I had lost, and expressed deep love and desire for Him. But my prayers were never answered. I never felt satisfied, and I started to question Him again. What kind of God, who says He loves me endlessly despite my sins and flaws, never responds to my pleas and cries? What kind of God allows such misery and horror in this world and sits in silence as He watches?

My relationship with God really started to feel like a game that He was playing with my mind and with my heart. He wants all of the Glory, yet hardly gives anything back in return. How is that fair?  All of the disease, all the suffering, and all the injustice in the world felt like it was being created by Him to “teach us a lesson” and bring Himself more Glory. That was exactly what I thought He wanted, because the God I came to know was selfish and cruel. Why would I ever want to praise a Lord that manipulates us that way? Why does he deserve any Glory for all of the cruelty He deals out? How is a life committed to a selfish, seemingly unloving, invisible man a life I want to live?

I began thinking further on the topic… If a decent person who is committed to creating good in the world and making the lives of other people better is not a Christian and has not asked Jesus for forgiveness, how could a good God send them to Hell? How could it be that every other spiritual person was entirely wrong in their faith and now rotting in the flames?  Why didn’t He guide them, too? Where does God put people like Gandhi, who was willing to sacrifice his life for other people, and Native Americans, who cherished every living being equally?

If I live my life in such a way that brings good to this world, on my own, without Him, where will He stick me? Will He punish me for that? Do I deserve eternity in Hell just for choosing my own path, even if it is still a “good” one? If so, I do not want to praise a being that is willing and able and determined to do that to me. I don’t want to spend eternity with Him, and I definitely don’t want to glorify Him, especially if He is too selfish not to see the good I can do without Him.


As I grew older and moved away from my dad’s house, my focus quickly changed to boys, fitting in with my friends, and dealing with high school/college. I began to experience a certain kind of rush that only Earthly things can provide: Being called beautiful for the first time by a boy I liked, moving into an apartment with my best friend the day after graduation, and escaping from the cops after being caught drinking underage.

I also experienced many bad things that I believe stemmed from both an underlying illness and my distance from a God that I used to spend every day with: Crippling depression, social anxiety, insomnia, extreme paranoia, and subtle forms of Bipolar Disorder. I clearly remember becoming so depressed that I stopped going to my college classes, and at night I would curl into a ball on the floor and scream out to God for some sort of alleviation. For a good time-span, I never received anything even remotely resembling a remedy, and that’s when my paranoia took a turn for the very worse.      

I began going to church again, reading my bible, and praying every second I got. The place I went for answers only gave me silence. I took this as God’s way of saying, “I hate you. You’re going to Hell.”

I  couldn’t live with it. Demons tortured me every second of the day, and all I could think about for weeks straight was, “I’m going to Hell, I’m going to burn, I’m going to suffer for all eternity.” I stopped sleeping, eating, and going to school. I contemplated suicide every second of the day in hopes of ending the persistent presence of utter darkness that surrounded me.

One day, I almost did it. I couldn’t take it anymore, but I was sure that if I killed myself, then I would end up in Hell like I thought God promised I would. So I was stuck.

I finally gave in and called my mom.

And then, before I could even blink, I was locked inside of a mental institution. They stripped me down, made note of every mark and self-inflicted wound on my body, and dressed me in a gown so thin that you could almost see through it.

The room was about the size of a gymnasium with rows and rows of beds all lined up side-by side. The whole hospital was co-ed, and I was young, covered in nothing but sheet-like material. I won’t repeat some of the things that were said to me by both men and women, but needless to say, I was petrified.

There were people screaming, talking to the walls, and banging their heads against the ground. I was placed on a bed at the very end. To my right sat a woman who repeatedly claimed to be a servant of the devil as she rocked back and forth, spewing profanities so fowl that I came to believe she was possessed. On my left, there sat a tiny girl clutching a Bible in her hands, reading some of the verses out loud. As I sobbed, she gently touched my shoulder and told me not to be afraid because Jesus loved me.

I was literally sitting in between God and The Devil. I swear, the juxtaposition of the two made me go even more crazy, internally at least. It took around five hours of stubbornly persuading the nurses that I wasn’t crazy (of course they believed me) in order to get out.

From then on, I decided to stop thinking about God for the most part. At least for the time being.

A couple years later, after many long nights of reading “Mere Christianity ” and studying theology, my mind formed a clearance where a pile of doubts and hatred used to reside. God sent us His Word in order for us to see that He loves us, as well as to provide a refining fire that teaches us right from wrong. In this life, He allows bad things to happen so that we may be able to search for Him and rest in His love, which is the best place you could possibly be. God, in Himself, is everything good, loving, and pure, therefore He cannot turn against Himself. He cannot lie, therefore He speaks to us through His Word in full truth. If a person desires everything good and pure and everlasting, then there is nowhere else to turn besides to Jesus, because every pleasure that Earth provides is so very temporary. And if we are doubting or feeling unloved by Him, it is the world and our impure hearts that curse us to live with internal desolation, not God.

A person cannot be given a new heart and find a love for the Lord based on facts, repetition, or rules. It is not based on a “feeling,” for love is not an emotion. You have to come to His feet and believe that you are saved by His boundless love for you, accepting the vastness of how marvelous it is that a perfect, whole, loving Being created you and loves you no matter what.

Even in all of my knowledge, I still struggled to find faith in my heart. I wandered around aimlessly for a good amount of time, and I still have moments of complete discouragement and doubt.

We are only human, though, aren’t we?

Our views on religion and testing for HD:


With everything being said so far, I need you to realize that my journey away from Christianity and away from having a faith of any kind was a long one. It wasn’t an overnight decision, and I sometimes still struggle with what I truly believe in. Labeling myself as an Atheist seems too “harsh” and definite, yet there is no better word in our language for what I feel I believe. And despite what a lot of Christians say about our world evolving to a point that is eliminating Christianity, I feel that they need to understand that living in what feels like an entirely Christian world to someone who is not Christian is also very scary and intimidating. I have tried it, multiple times, and maybe I just never “did it right,” but I know for certain that I do not want to try it again. I have found peace and joy and purpose in my decision, and a lot of people will never understand that.

When I first started thinking about testing for HD in high school, it often made me think about the meaning of life and death. When faced with the idea that my life could be shortened and that I would have less time than everyone else around me, I began thinking that my life now was more important than whatever was to happen after I died. I was not going to waste time spent pleasing a God I didn’t even agree with and who I thought was cruel. And I most definitely did not want to spend my entire (shortened) life and all of eternity praising a God that allowed me and my loved ones to endure this kind of suffering. I did not think He deserved that kind of Glory after what He did to me. I eventually considered time in Hell as a better option than a life wasted worrying about Him when He was obviously not worried about me.

That may sound absolutely absurd or foolish to someone who is working to achieve the goal of eternal life in Heaven, and I entirely understand why one would think that. But I just knew that if I inherited the gene for Huntington’s Disease, then death would be the final step, the cure to my sickness and an end to my suffering, and I would not want there to be anything afterwards. By letting go of the concept of Heaven and Hell, I allowed myself to accept the time I have now as the most precious time there is. There is no higher goal, there is no one else to please but myself, and that motivates me to live my life exactly how I want to.

With my anger towards the god that Christians created, I concluded that if there was a god, the Christian one was not the right one. I did a little research into other religions, hoping for some direction, but found nothing satisfying there either. The most appealing belief to me was reincarnation; I still liked the idea of meaningful connections in the universe, though the logistics don’t seem quite right. Eventually I came to conclude that no religion had gotten it right yet and it felt like I was the only one who thought this way. All of these things led me to my final stage of belief, the set of beliefs that I currently hold, and what I think gave me the courage to decide to test so young:

  1. The God I used to believe in is cruel and unjust. His promise of eternal love was a scam for higher glory. Spending my life praising Him made me lose a part of myself. Heaven would not be worth the loss of life and time with loved ones that I only have now.
  2. It is easier to live life to the fullest if I believe there is nothing after death, no afterlife, no Heaven, and no Hell.
  3. I am positive for Huntington’s Disease and I need – I deserve – to live my life exactly how I want to.
  4. I can bring good into the world, I can inspire people, I can improve the lives of others without His name overshadowing mine and that is not selfish. I can truly love others and leave a good mark on the world because I want to, not because I feel I have to for Him.


Twenty-one years old. I missed God terribly and always wondered where he was when I began self-medicating my misunderstood mental illnesses by drowning my doubts in bottles of alcohol. I began to wonder if God even existed at all, so I continued my studying of theology while reading “Mere Christianity,” by C.S. Lewis, which, in a way, proves that Christianity is the one, true religion. I compared the Bible to other books, and its theology proved by far to be the most accurate. My faith was still only small and unsteady, but I knew three things were true:

  1. There is a higher power, and if there’s a higher power, He has to make Himself known.
  2. Of all the “gods” in the world, Jesus’ foundation is unconditional love, which I desperately needed.
  3. I contained an amount of faith that grew into at least the size of a mustard seed, which Jesus pronounced was powerful enough to move mountains. (Matthew 17:20)

So my faith grew little-by-little, and though it was planted in rocky soil, it began to stem slowly over time.

There was still a huge factor that haunted my life: I knew that something was terribly wrong with my mind. I never felt “normal,” and I was so confused as to why a persistent, erratic twitching kept me up at night. Reluctantly, I began reflecting on a hereditary disease my grandfather had that, according to my family, “Could only be inherited by males.” 

One day, I was rummaging through some pictures in my mothers drawer out of interest in our heritage. I began finding old, black-and-white photos of women who contained visible traces of my DNA in their eyes, their nose, and the way they smiled. I flipped each one over, searching for a description of who they might be, but I discovered something horrifying instead. Scribbled in faded, black ink on each of the photos read: DIED OF H.D.

My heart stopped.

I knew I had it. This is what’s been wrong with me. 

Without telling anybody, I immediately got tested, praying to God that he would spare me from a life of antagony.

I begged I wouldn’t get it. I prayed every day.

And then I got the phone call.

“Your test results are ready. Please come in to see the doctor.”

I’m not sure what came over me, but I firmly believe that you can know something is true without feeling it in your heart. And so I prayed, through reluctant hands white-knuckling the steering wheel, “God, please give me the results that will bring you the most glory.”


Yeah, I cried. I mourned. I got angry. I gave my mind over to depression for a while. But you know what? One day, God gave me the strength to get up, become a part of The Huntington’s Disease Society of America, and write my first blog post on my testing experience. The piece I wrote received over 200 shares, and now I am a full-time writer who spills her heart to the world in order to share empathy, hope, and love to others who are in pain. I get to go to HD conventions and camps on scholarships. I get to share in my pain with others and make life-long friends. I’ve had strangers cry on my shoulder, and I’ve involuntarily cried in a room full of 50 people. Most importantly, I’ve stood my ground on what I stand for through all of the depression, anxiety, and fear of the future.

That type of strength does not come from me. God clearly had a plan for my life through the suffering I had prayed to receive when I was little.

I am not perfect. I fall down all the time. I fail daily. My faith is still as unsteady as a roaring ocean, but it’s big enough to make a change. This life consists of Jesus moving mountains for me, even when I’m too busy to notice.

Our views on suicide:


Suicide has always been a tricky topic for me because I have dealt with it in so many different aspects of my life. I’ve thought about it through truly sick and mentally-ill family members, over-dramatic ex-boyfriends, depressed or grieving friends, and in a more professional setting, as well. Because this is a discussion about our views on religion, I must admit that I have never really thought about suicide from a religious perspective. I have never really needed to because once I truly became aware of suicide as an issue, I was already disconnected from Christianity. Because my mind tends to focus on science and psychology as a basis in which I believe, I’ve always thought about it as a personal struggle with oneself and the overwhelming issues in their life. With that being said, I ask you to tread through my next thoughts carefully and not take them too far beyond the words that they actually are.

When it comes to suicide in general, I am definitely an advocate for prevention. I would do anything to protect another person, to help empower them to be comfortable and happy and lead successful lives. In any situation, I would do my best to ensure that they know that they are loved, and that despite what they might think, people would care if they were gone. If the reason for wanting to end one’s life is due to temporary problems, I would always do what I could to help them change their mindset and push them through their struggles.

With that being said, I don’t necessarily see a place for God. Others may find worth from his opinions and see value in his expectations, but I know that a lot of people also experience stress and anxiety from not being perfect in their faith. Instead, I see the importance of knowing that real people who are present and experiencing life with you right now love you endlessly. Not someone or something who exists out of sight and has failed you multiple times, who punishes you for feeling upset about your life, and labels it a sin to end your pain in the only way you feel how. There is real gratification, immediate return, and a significant sense of hope in absolutely knowing that the person standing along side you loves you and wants you alive. In a time of need and despair, a person should be focusing on healing themselves rather than disappointing a higher being.

And since suicide is often the last resort for people who feel they are a burden to their loved ones, I view the act as selfless, and usually a last portrayal of love for the ones they care about.Viewing suicide as a sin just further solidifies my concerns in how a good god could punish a good person who has lived their life gracefully and full of love for others for one final act of selflessness. I personally would not want to continue a life of pain and suffering just based on a fear of going to Hell. Rather, I would want to endure that pain and work through it because I know there is more life and more happiness once I do.

On the other hand, I feel there is a sense of dignity in dying when one is suffering from disease. Suicide when one is sick, when one has lost themselves completely, is a different act of selflessness than a suicide without a critically diseased brain. Even though I would never expect or wish for a sick family member or friend to end their lives before Huntington’s did, despite knowing that it would be one of the hardest things I could ever imagine enduring, I would always respect their desire and decision to do so because I have had the same thoughts myself.

I have imagined that using physician assisted suicide or another peaceful way of dying would be the easiest way to go when my brain decays and my body is not mine anymore. I have always thought it would be more comfortable and more gratifying to knowingly be able to say goodbye to my loved ones, to have them see me as me again in my last moments, and to beat this disease by never having to truly face its harshest parts. It would save my family money from medical bills and nursing care, from precious time for themselves and their own healing. When I go, it would be entirely my decision rather than HD’s, and I could understand finding peace and happiness in that decision.

I know this explanation doesn’t really have a conclusion, as I don’t really know where I stand on all of it yet. I cannot truly imagine taking my own life, even if I were sick beyond my control, though it has crossed my mind plenty of times before. I would never want to hurt my family or take away my time from them, but I do see relief in knowing that I could take complete hold of my situation and end the battle exactly when I wanted to. I see value in ending this disease on my own terms instead of letting it take me away from everyone I love with my body still there. I’d still be strong enough to tell my family and friends that I loved them as I went .


Honestly, I’m not sure where I fully stand when it comes to suicide. I definitely think that it’s a sin; I mean, you’re murdering yourself, taking away a life that was given to you as a gift. YOU didn’t choose to be born, God chose a time, and I believe His timing is always perfect, even when it comes to dying. Everything serves a purpose in some way.

Shamefully, I’ve always thought that I would commit suicide when my symptoms start to get bad, or when I begin to lose who I truly am. I’m so prideful. I don’t want someone feeding me through a tube, changing my diapers, or dealing with my constant mood swings. Especially if the person taking care of me is my husband or children. I don’t ever want to become a burden, and I’ve always thought that it would be better off if I was gone during that time.

My stepmother raised me to believe that if you kill yourself, then you go to Hell because you can’t repent or ask for forgiveness after you’re dead. Others tell me that you will still go to Heaven because Jesus died for all of your sins on the cross. You can never ask for forgiveness for every little thing because there are sins we commit that we don’t even recognize as such. So, I’m at a crossroads.

At the same time, I think back to my mom and my sister, and I would much rather take care of them and love them through all of the hideous symptoms that HD brings than have them commit suicide. I would be devastated, and my mind would forever wonder whether they would be dancing in Heaven or burning in Hell. It sounds crude, I know, but I’m only being honest.

There are some things, though, that I know to be true:

When we are at are weakest, God is at His strongest for us.

When we lose who we are and surrender our bodies to HD’s painful dance, God remains the same. He knows your soul, and His timing is perfect. Let your purpose play out, even if you’re blind to where it leads.

John 13:7- “Jesus replied, “You do not realize now what I am doing, but later you will understand.”

Dear Congress

By Melissa Fern


Dear Congress,

On a Saturday night, with college parties erupting all around my apartment complex, I have decided to write to you. Instead of searching graduate programs at universities I’m interested in, instead of grabbing drinks with a friend after a long day at work, instead of inviting friends over for a movie… I am writing this letter for you. To you. And I am begging you to listen.

This is my plea to please pass the Parity Act. We are now halfway there after Social Security updated the guidelines for Huntington’s Disease rather than the outdated “Huntington’s Chorea” definition that ruled for the last twenty years. Now, we just need the two-year waiting period waived for diagnosed patients to receive Medicare.

I have only met with Congress members twice now and feel I have hardly had the chance to truly share my story with you. If I can hold your attention for longer than the three minutes I got during some of those meetings, if I can convince you to finish reading this post, my hope is that you will finally understand how important this simple piece of legislation is. The Huntington’s Disease Parity Act is necessary for a community that is small in numbers but huge in my heart. The community that this legislation directly impacts is my family, my friends, my caregivers, and other people who I may not have met yet but cherish and believe in during this fight. They are already dealing with more than they ever bargained for but they are the strongest and most deserving people I know.

The first time I ever went to D.C. was to fight to pass this bill. I got the tour of a lifetime and was able to walk in the tunnels under the Capital and snag a picture in front of the White House. But at that time, I was exactly a week away from learning the results of my genetic test. I still had hope that my genes were negative for Huntington’s Disease. I was able to tell my story as a “what if” rather than “this is reality.” I was still able to say that I was just another person at-risk for HD, another person that you could act like you cared about.

On June 6th, it was revealed to me that I inherited the gene mutation that would eventually cause Huntington’s Disease. I thought my life would do a 180 after those couple of seconds it took for the doctor to get the words out. I assumed everything would change, but in reality, everything was still the same. My genes had been that way since before I was born, it was just my knowledge of them that changed. And now, after finding out the truth, I knew that all I could do was fight. For myself, my future, and all of my loved ones who would be affected by my disease.

On July 20th , I met with Congressman Levin (D-MI) with five other people impacted by Huntington’s Disease by my side. I sat there quietly as you, Congressman, told me how important this bill was and how worthy this community was for this waiver. When you ended the meeting, though, you tried to convince us that it would probably never happen because once “we” get this, “everyone” will want it. What you didn’t know when you said this, what you didn’t give me time to say, was that just a month before meeting with you, I learned that I had inherited the HD gene from my father. You assumed I was there for another family member or for the community in general when in fact I was there for myself. You wished me luck for after graduation and seemed to question me when I mentioned I didn’t have definite plans yet. At 21 years old, 4 months away from graduating from Ohio State University with a Bachelor’s of Science in Psychology and Women’s, Gender, and Sexuality Studies, you judged me for not having my life planned out yet.

Congressman, please take a moment and think back to when you were 21 years old. Remember when you were about to graduate with your first degree. What were the top three things on your mind? I’ll take a few guesses based on what I see with my peers today: How about the first week of the semester coming up? Next week’s exam? The next frat party or football game? Applying for another internship? Your graduate school options? Who your future wife or husband might be?

Imagine balancing all of that on top of the realization that you have at least 20 years less of life, of retirement, of career-making, than all your friends and classmates. Would you have all of your life planned out yet?

Now add in everyday anxieties. Not wanting to get out of bed, breaking down if something small goes wrong in the morning before work, panicking every time you have to get in a car, and feeling physically sick from the amount of schoolwork ahead of you for the night. Some of these may be part of the normal college experience but they become elevated when your brain is infected by disease.

Add in the stress of the college debt waiting for you after graduation. This is normal for a lot of students these days but they have 20 more years of time spent on a career, building a 401K, and paying those loans back before having to worry about the next life step. My financial advisor told me straight up that I should not start a 401K based on my situation. Why? Because I will probably die or need to take money from it before the normal retirement age and the additional expenses would be so harsh that the return would be almost nothing. Imagine being 20 years old and having someone tell you that you will probably die before you retire. How do you handle that and still balance “normal young-twenties’ activities”?

Next, start worrying about what you’re going to do after you graduate because those loan payments are coming soon. Do you go to graduate school to try to make more money in the future? Is that worth the time and money investment if your life is going to be shortened? Do you search for a job that makes you more money or a job that you truly love? When your time is limited, what becomes more important?

Don’t forget that whatever you do, you need health insurance and you need to get it through a job or a spouse so they don’t ask “the question” about if you have tested or not.

Oh and about that spouse… Do you marry the person you love sooner rather than later because you know you have less time and you could potentially wreak some of the legal benefits? Is committing to marriage strictly for the legal benefits an immoral decision to make? Or do you put it off in-case they can’t handle you once your anxiety and other symptoms worsen? You know you won’t be able to handle the cost of divorce down the road, either.

You need to start saving money for your future medical bills so you don’t put your family in debt. You need life insurance and long-term care disability insurance but you’re too young for any company to grant it to you yet.

And your dad’s symptoms are getting worse. Do you move back home to spend more time with him while you still can? And if you move back now, you’ll be stuck until he’s gone. At what point is it okay to be selfish and follow your dreams, move to new, far-away places, and travel the world? Is that time for exploration and self-discovery more important than the comfort of your own family?

Finally, because your dad has been sick for 14 years, he has no solid income and he had to go bankrupt before he could get health insurance through the government. Even now, he can’t afford the medications or neurologists that would really help him. Will that happen to me, too? What will happen to my brother, both financially and emotionally, if he has to take care of me and dad both? Does he deserve to have his dreams ripped away from him because the government denied me the basic right to proper health care, despite my genetic code? What happens to our family if he inherited the gene, as well?

To tell me that I am deserving of the right to health care but blatantly say it will never happen seems like the contradiction of a life time. I’m not asking the government to hand over everything to me. I want to make a life for myself and be proud of my accomplishments until I can accomplish no more. I just want a security blanket, a guarantee that I can have access to medications that could help my symptoms or cure my disease when they become available. Just in-case I don’t have time to make these decisions or set up the right insurances for myself, the Parity Act helps ensure the financial security for my family that will be taking care of me. It would allow me to breathe and maybe feel like a normal college student again. I could focus on getting my first “real adult job” or even start seriously considering graduate school, spending more time with the people I love, and studying for my last exams.

In order to understand where I am coming from and why this bill really is so important, you need to think about where you were at 21. You need to imagine yourself in my shoes because there is no other way this bill will be passed. Your empathy and emotions as a human who was once 21 needs to take over your trained political strategies and allow you to look past potential costs and forget “who is next.” In the last 8 years, not a single other long-term disability or disease has asked for the same waiver that Huntington’s patients are asking for. You need to be able to see that this is a problem for more and more youth as they test at younger ages in order to start preparing for the future because right now they have no sense of security. This is an every day worry for people who are suffering right now. Passing the Parity Act could practically slip under the rug, without much cost and without much attention politically, but it could impact the lives of so many strong and amazing people who need it.

Please, Congressman Levin and the rest of your colleagues, if you have made it this far in your reading then I know you have some heart involved with this topic. You need to be able to imagine the situation for yourself and your own family and see the urgency in getting this bill passed. You must fight with us.


Design Contest!!

Calling all artists, creatives, and designers! Capturing the Corners is looking for a new design/logo for our T-Shirts and some other merch we’ll be putting out! Take a look at our pictures and get a good idea of our style and message, and then send us your best design! We will take the top three winners and have everyone cast a vote. If you win, then we will write a piece on you for our blog, promote your page/company, give you a free shirt, and mail you a $20 gift card to Chipotle! The contest will run from now until the end of September. Can’t wait to see what everyone comes up with!


My 21st: A Letter From My Mama

By Melissa Fern


“Dear Daughter,

21. Wow. Now, there’s a number to celebrate.

How can it be that the little girl who 

  • Filled the fish tank with Cheerios, just to see if they’d float there too…
  • Woke Pam up at 3 a.m., just to see if Preston could play…
  • Wore shin guards as armor & strapped a plastic sword to her waist, just to be Zena, Warrior Princess…
  • Rode butt naked on the back of a mini electric quad, just because there was no time for the putting on of pants…
  • Stuffed kitties into Lego buckets, doll beds & baby strollers just because she was convinced they liked it…
  • Who would sneak into Bubby’s room to get his Beanie Babies, just because hers needed new friends…
  • Played with imaginary Dino”soys”, just because they were lonely and needed someone to be their friend.
  • Who drew chalk flowers and kitties all over the drive way, just because they gray didn’t look so pretty.
  • Who sat all alone in the front pew of an empty sanctuary just because she was talkin’ to God…
  • Who didn’t want training wheels on her bike, just because Bubby and Preston and Brandon didn’t have them. “Just teach me to ride, Mommy.”
  • Who would set up a little table and tea sets, gather all her teddy bears, baby dolls and stuffed animals, and have snack time, just because you should eat with your friends everyday…
  • Who yanked her little hand out of mine and ran to the end of the driveway and said, “Listen Mommy” and pointed across the street to the neighbors house, just because she was certain she heard “a baby kitty crying!” … And sure enough, hiding under pine straw a baby kitty was crying! And was immediately rescued by little 3 year old arms, murmmering, “Its OK kitty” and she named him Tommy.
  • Who found great joy in wearing no pants and minimal foot wear, just because they were not comfy and just “git in me way.”
  • Who “saved” worms on sidewalks and driveways after the rain, just because “me don’t want the sun to hurt them.”
  • Who would sit in the hallway outside Bubby’s door when he didn’t want to be bothered with her, just because “me can still hear him… me just like to be with him.”
  • Who wasn’t intimidated by deep water when she couldn’t swim well… a Big Ten campus… a boys hockey team… a jump from an airplane… or a genetic blood test…

How can it be, that my girl – whom I could go on & on about with so many precious memories of… has already grown into this amazing 21 year old woman?! How? Some days I have such a hard time letting go of my “little girl” because in my mind – you are still her. And then – other days… I smile at this incredible young woman blooming right before my eyes! Such a beauty!

I see those memories of you, in who you are becoming and I am so proud of you! Once, a little girl – Now: 

  • A researcher… filling the fish tank with Cheerios! And now- discovering MORE!
  • A friend… who is there – at all hours of the day or night.
  • An adventurer… no training wheels needed… just go for it! Living life loud.
  • A warrior … who knows how to arm herself for “war”, just like Zena… Confident.
  • A fashionista… who, thank God, wears pants, albeit stretchy, comfy pants!… and still knows how to look fabulous!
  • A kitty whisperer… who still knows what they like.
  • A kind soul… who understands everyone needs a friend.
  • Who takes kindness to the next level… compassion… and reaches out to be the difference in someone’s life… Dino”soy” or not.
  • An artist, who sees a canvas in her life and brings meaning and beauty to it.
  • A philosopher, carefully studying the ideas put before her, before simply diving in to beliefs based off of someone else’s “say so.”
  • A feminist, advocating women’s strengths and one who has the courage to believe she has the same rights and opportunities and “say so” as any “boy!”
  • A planner… whether it be a party, a road trip, a phone call – staying in touch with friends who matter and people you love… takes a heart that knows it matters… everyday.
  • A rescuer… still hearing the cries of kitties and doggies others have abandoned.
  • A sister… who still loves her brother.
  • A brave heart, courageous spirit, untamed soul, an impossibility believer – “Sometimes, 6 times before breakfast!”
  • A life lover, positive seeker and a world changer!

In all this, my sweet daughter… most of all I see this:

How you LOVE!

Always keep that in focus, Lil’ Dipper… that’s what makes the difference.

Who you become… is defined by who you are. Look at all these things you are… and keep embracing them! You haven’t swayed from who you were – even from a little girl and I see BIG things being impacted in your life as you continue to pour YOU into all you touch!

I love you beyond words.

And I am excited for your future. I see bright things ahead! Amazing opportunities! And impossible miracles… Coupled with great love, favorable circumstances, and abundant joy!

I can believe for these things for you because I see you believing for them for others too… not just yourself.

You make such a difference! And I am so blessed to be your mama.

Your 21st year was full and no matter what… I know you are STRONG ENOUGH!

Know, that you are an amazing human and that you are blessed and a blessing!

Keep living life FULL, baby girl. I can’t wait to watch.


Your forever cheerleader!

Love, Mama”


These are the words my mother sent in a real, written letter as a birthday card this year. Three weeks before I turned 21 years old, I was told I inherited the gene for a disease that will kill me. In my piece recounting my results appointment, “This is War,” I apologize to my mom for her memories of me as a child that may distort once the disease starts taking over my mind and body. This letter felt like her rebuttal to that apology and I had to share.

It took me too long to realize how much of a valuable friend my mother could be. I ignored her when I needed her and acted like I didn’t care when she wasn’t around for the “big things.” As I’ve grown older, we have both let each other “in”. And despite her not being “the HD parent,” she has encouraged me to dive into what Huntington’s Disease has in store for my life with a positive outlook and a sense of greater purpose.

I hope these words help others who may have drifted from their parents or loved ones while struggling through something, find a way to reach out to those people again. When we are hurting or scared, it often feels easier to push away those who try to help or those who love us endlessly. Those relationships are the ones we need in order to get through whatever is haunting us. Those relationships help remind us of who we really are, who we have always been, and what kind of difference we can make in the world once we pull through.


Thank you, Mom. For your endless love.

For your support and courage, despite your fear of what my genetic test held.

For laughing with me through the tears on the phone as I told you the results.

For understanding why I had to do this “alone” and encouraging me to dive in head first afterwards.

And for continuing to remind me of the real truth: that this disease does not and will not ever define me. That I am so much more beyond what my genes hold and despite the changes my mind and body will experience.

He is Making All Things New

“Some people feel guilty about their anxieties and regard them as a defect of faith. I don’t agree at all. They are afflictions, not sins. Like all afflictions, they are, if we can so take them, our share in the Passion of Christ”-C.S. Lewis

It is okay to struggle with your faith. Let me repeat: IT IS OKAY TO STRUGGLE WITH YOUR FAITH.

Struggling with your faith means that you have, at the very least, the faith of a mustard seed, which Jesus says is enough to move mountains.

He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”-Matthew 17:20

I know some of you feel lost, as I did-no, do, and it can be very difficult to find God in these situations. He’s there, even if you can’t see Him. Even if you can’t feel Him. And he loves you unconditionally, no matter how little your faith may seem.

Keep pushing forward. Keep struggling.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”-2 Corinthians 12:9-10

His power is made perfect in weakness. Perfect. In your lowest, darkest times. 

Hang tight my loves. He is making all things new.

Cameron’s Letter

By Cameron Howard

To all of my family and friends,

I am writing this letter for many reasons: some of you I have lost touch with, some of you have questions that you may feel uncomfortable asking, and there are some whom I would like to explain my situation to but cannot take telling the story over and over, or I cannot articulate it all correctly. Some of you that I have not seen or spoken to for a while do not realize that anything has changed in my life, and those of you who I do have contact with see me at my best and do not realize that those moments are few and far inbetween.

For instance I have been trying to write this letter for about four weeks, as I have great difficulty starting and stopping projects and articulating my thoughts. I hope this letter comes out clearly since it was written with pages of notes that I can barely understand or read. It was also written with a lot of quotes from other people, and an amazing thing called spell check. My hope in writing this letter is to educate (not everything on the internet is true), explain why I do the things I do (my great fear is that I will hurt people’s feelings, or make them feel that they are unimportant in my life), and to let you know how you can help so that my family and I can live as normally as possible and enjoy our precious time together and with our family and friends.

For those of you whom I have not kept in close contact with: I was diagnosed with Huntington’s Disease (HD) in February of 2013. Prior to that, I battled with symptoms that varied for roughly two years ( and probably more) and was not sure what the cause was. I tried many different avenues and the doctors found nothing, so I finally turned to my last resort.

I decided to get an HD test done, as it is a hereditary disease and runs through my biological family. The test was positive. In some ways, the result was devastating, but in other ways, it was a relief. I finally had an explanation for the symptoms that were slowly worsening, I now appreciate all that I have much more, and it has brought my husband and my children much closer together. We were already a very close family, but testing positive seemed to bring out amazing, (sometimes hidden) graces, and strengths within all of us that we had not been aware of before.

However, it is very disheartening that my mind can hold maybe 25% of the memories that my husband and children have. But we try to find humor in this unfortunate situation as much as we can.

My husband is a master at making me feel “not alone” in my shortcomings. One time, I left my van running outside the gym for about three hours, so the next time we went to the gym together, he also left the van running! I burn myself on accident many times while cooking, and every now and again he will come into the kitchen and tell me he burnt himself. I have burned and completely messed up many recipes, but he always eats what I make, telling me with his mouth full that it tastes perfect.

 My 17 year old daughter and I joke quite a bit about the fact that we can now understand each other better now that I have the symptoms that she has just by being a “teenager”, with the selective hearing, goofy sense of humor, and lack of focus and motivation. My 16 year old daughter follows behind me and fixes my mistakes without saying a word, and if I am irritable and “fly off the handle,” she tells me to settle down over and over until I comply.  My 9 year old daughter is very protective when there is an excessive amount of noise (as I am very sensitive to it) and she’ll pop up behind me out of nowhere to put her hands over my ears and protect me.

To give a very shortened explanation of the HD test results: When I got my test back, my CAG (copies of a gene) count was 40. At 39 and up, the gene is in “full penetrance”. The gene repeat number does not change over time, and it does not tell you how bad your symptoms will be. It simply tells you when a majority of the symptoms might appear. Generally, the higher the number, the sooner symptoms will show, but everyone is different. For example, if 35 to 45 is the average age of diagnosis, then a repeat of 36 to 45 is usually the gene repeat number for that age group.

Having a disease that, in its early stages, is not always visible on the outside is extremely difficult. Just because you can’t see the changes does not mean they are not real. People with HD tend to be very clever at hiding symptoms so that a lot of people are not aware of the changes. For instance: I try to not wear tennis shoes very often because it is difficult for me to tie them, I only eat certain foods so that I don’t choke as much, I try to listen in on a conversation for awhile so I can hopefully figure out who that person is by what is being said, I change how I hold things so that they are easier to use (like holding bread to spread something on it or squeezing my cell phone very tightly so I don’t drop it), I try to make one dish meals because it can be very overwhelming to cook more than one thing at a time, I may sit on my hands to make the movement look less obvious, and subconsciously, when I am extremely restless and the chorea becomes more obvious, I allow my body to kind of just “go along with it” to make the movements look more purposeful.

I would like everyone to know that just because I have a disease does not mean I’m not still a human being. I have to spend most of my day being very careful of what I do, and if you visit, I may not seem like much fun to be with, but I am still me, stuck inside of a sick body. I still worry about my friends and family, and I am interested in what is going on in their lives. It just does not always look like that on the outside.

That being said, I would like to offer some suggestions that are extremely helpful to me, which in turn are extremely helpful to my husband and children as they are the ones who are there to comfort and help me through horrific panic attacks, among other issues. Anything that I or anyone else can do to lessen the occurrence of these attacks is my main focus. Please understand that being able to socialize, think clearly, understand words that are spoken to me for five minutes does not necessarily mean that I can continue for ten minutes, let alone an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover by some time in complete silence.

We have found that if we stick to one “event” per day (like a trip to the grocery store, a birthday party, visiting a friend, etc.) is much easier on me mentally. If we do not stick to that plan, then the next couple of days are not enjoyable for anyone. My symptoms may vary suddenly, meaning I may need to cancel an invitation at the last minute, and if this happens, please do not take it personally. My symptoms may also change when my doctor switches up my medication for the better of my symptoms. I am very sound sensitive which was very debilitating for a long time, but by using some coping mechanisms suggested by one of my doctors, that sensitivity is still there but extremely lessened. Please understand that if I say I have to leave, take pills, or have quiet NOW, that I do have to do it right now, it cannot be put off for later or for an instant. If it is put off, the reaction in my brain and body will not be very forgiving.

Although HD is a degenerative disease that is incurable, it’s symptoms can be alleviated by different mixtures of drugs. At some points, I will be on a “trial” basis to find out if a certain drug is right for me and I may be better, I may get different side effects, or I may get worse. When taking my prescriptions, they wear off before the next ones kick in. That can mean a wait of 40 minutes or so. I try to schedule things accordingly when I know I will be at my best.

Please do not call me on my home phone, I will not answer it and the ring makes me anxious, texting is best because there is no startling sound, I can refocus on what I was doing after, and I have time to respond and think about how to put together what I am trying to say. I can also understand it better when I am able to reread it. Most of the time when things are spoken to me, I don’t hear it the way you said it, and I have a hard time finding my words, so it is much more difficult to concentrate while speaking to someone.

Just a few more helpful tips: calm environment, avoiding stressors, constant reminders, maintaining familiar routines, breaking tasks into small steps, patience, avoiding asking open-ended questions, and speaking one at a time with one conversation in a room can all make a huge difference in my life. Keep chairs, shoes etc. close to the room walls to keep me from tripping.

But most importantly, I need you to understand me.

cameron howard

An Open Letter to Caretakers from the Cared-For

Being a caretaker is not easy.

I know. I’ve watched you work hard for me every day.

Often times, you might think that all of the sacrifices you’ve made are not appreciated the way they should be. Though I may not be able to tell you, I know that if my past self had been able to look into a telescope that showed me the future, then the thankfulness in my heart would swell up in the form of tears that would fill my eyes and spill onto hands that were made for keeping me alive and well as my sickness took control.

I’d see you sacrificing your time to take me to the doctor’s in order to get the medication I need. I’d see you making me meals, feeding me patiently, putting me to bed, cleaning up my messes, and making sure that I’m safe and comfortable. I’d see you remind me time and time again where I am, what my name is, who I love, and that you love me. I’d see you crying because you miss who I used to be, my company, and arms that were able to embrace you and tell you that everything was going be okay.

My love, lift up your head. I know that sometimes you feel like giving up and that none of this matters, but you’re the only reason why I’m still here. I need you, and I want you to know that you are not alone. There are other people who struggle with the same battles you face every day, and a lot of them share your pain. God allows every breath we draw to be inhaled as long as we have a purpose here on Earth, and you and I are still here, even though I am sick. There is meaning in all of this, though your eyes may not always be opened to what that entails.

If I am your Lover: We pledged ourselves to each other, through sickness and in health, and you are doing such a wonderful job at keeping that promise. I loved you then and I love you now, even though I might not be able to show it. When I dream, I can clearly see the day when we first fell in love, and I remember thinking that you would always age more gracefully than me. Memories from our past play like a movie stuck on repeat, and every time I emerge into my dreamy state, I remember that I’ve always loved you more than the day before. When I am awake and trapped inside of a body that is ill, I watch every move you make that helps keep me alive. You’re the only thing that I see, and since the day we found out about my sickness, I could’ve never prayed for a better way to live out the rest of my days. I love you with all of my heart.

If I am your child: I know that you never wanted this type of future for me, but here we are. I came into existence as exactly half of you, but each time that you make a sacrifice for me, a place deep inside of me learns that I want to be more of who you are. You never asked for this, yet you still love me in the same way that you would’ve loved me if you weren’t my caretaker. I know I make things hard on you at times, but you are doing more for me in a day than most other parents are even asked to do for their child in a year. You’re the only one who has dedicated their life to me, and someday, I will be able to look into your eyes, alive and well, and tell you that there are no words to express how thankful I am for you. As a baby, I clung to you for comfort, fell asleep to your soft singing, and relied on you for everything. Today, the same still stands, and you love me just the same. I love you with all of my heart.

If I am your parent: When you were little, I changed your diapers, rocked you to sleep, and taught you how to live and love to the best of my ability. I stayed up late to take care of you when you were sick, I curled up into bed with you when you were scared of the dark, and I let you have the better part of everything I had. Now, you are doing the same things for me. I never wanted to take away these prime years of your life so that you could take care of me, but you did it without hesitation. I may never be able to watch you walk down the isle, hold my grandbabies, or give you advice whenever your life gets rough, but I want you to know that I spent the better parts of my days hoping and late-nights praying that your life would be filled with love and happiness. Though I may not be able to tell you, I still love you just as much as the day you were born. Please be patient with me like I was for you when you were struggling to take your first steps. You will always be my baby.

And for everyone: You are known, you are needed, and being my caretaker is the biggest gesture of love that you could have ever expressed.

I am still that same person that you used to know, you just can’t see it right now. I am hidden behind a cruel hand that the world has dealt me, but I am still here. I can see you, I can hear you, and I live because of you. Someday, I will be able to thank you.

I know you love me even though you get frustrated with me sometimes. And I love you, with all of my heart, and I’m here to remind you that “love” is not an emotion. It’s selfless, patient, kind, and everlasting. It lives in me and it lives in you.

And love does not get sick. Love does not take breaks. Love does not forget.

Love never dies.