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.

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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.

 

 

My 21st: A Letter From My Mama

By Melissa Fern

6.30.16.

“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.

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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.

This is War

By Melissa Fern

It’s 9:00 a.m., Monday, June 6th, and I am laughing with nerves, unsure of what to expect. My hand shakes slightly as I force biscuits and gravy into my already unsettled stomach. I’ve been wide awake for hours before my alarm, roaming around the room, trying to keep myself busy. But as soon as it goes off, I want to disappear into the comfort of my bed and stay under the covers until the hotel kicks us out.

My mind dances back and forth between the two options before me: “Don’t think too much about a negative, you need to prepare for the worst”… “Don’t think too much about a positive… you can’t break down before.” I try to focus my attention on my friend and my lover, worrying about what the next hour will bring for them rather than me.

At 9:30 a.m. My friend and I are packed and in the car, waiting for the other to check out of the hotel. Of course he is making us late and I am focused on him and the potential traffic rather than what it will mean to finally walk into the hospital.

At 9:45 a.m. I arrive at the hospital and argue with the desk clerk, telling her that I want to pay out of pocket instead of applying for financial aid since I am not using insurance. I can tell that she obviously thinks I’m insane, and my appointment for neurology probably solidifies her thoughts.

Walk to the elevator. Wait.

Find the waiting room we need. Wait.

Continue laughing, talking about unrelated things, and focusing on subjects we didn’t really care about then and don’t really care about now. The distance between D.C. and Columbus. The weather outside and the rolling hills on our drive. What to eat for lunch.

At 10:00 a.m. My genetic counselor walks into the waiting room and doesn’t say a word. I half smile at her, recognizing the look on her face immediately. We all stand like zombies, half walking and half floating over to her. When I get closer, I feel my feet touch the ground again.

I know. In her face, I can see the answer.

C1

C3

C5

C7. Room C7.

“We’re in here” she says and gestures inward.

My immediate thoughts: Okay, this is real. This room is cramped. Maybe it’s negative. Where should I sit? Is my doctor really introducing herself to my boyfriend right now? Out of all things, does that matter? She holds out her hand to him and it hangs there for what seems like forever. Who is sitting where? There are not enough chairs. Is everyone okay? It’s warm in here. My genetic counselor is still half smiling. Okay

There is an awkward struggle and hesitation between everyone. My posse is finally seated and I am squished between the man who swears he loves me and the uncomfortable arm rest on the small bench we share. There are too many people in the room. The heat from the loved ones around me surrounds me and I feel cramped but secure for one second.

Just one second.

I imagine my doctor hovering for a few minutes before she sits down and opens the folder. I know she’s already seen it. She knows what she has to say. My mind flashes in what seems like bursts of light, photographing every few seconds and making time fly by without my knowledge of what is really happening. She doesn‘t hesitate for a moment.

“We got your test results back and unfortunately you tested positive for Huntington’s.”

Duh you got my test results back. Oh. Deep breath. Heartbreak. Shit.

I start crying, one hand covering my entire face as the other clenches my two friends’ hands at once. I feel the love of my life tense up next to me. His chest tightens and his heart bursts through his ribs. He is frozen, as everyone else in the room seems to be, but I am catching fire. The spark I always felt finally burst into flame. I expected this, at least somewhere inside of me I knew, but he was the one who kept the hope for a negative result alive. And now that hope is gone.

What do I do? Stop crying. Ask questions.

“Do you know the C.A.G. repeat?”

“Eighteen from your mom, forty-three from your dad.”

I hear my heart shatter inside and I lose my breath. I take a minute as I sob and then pull myself together again.

Quit looking me in the eyes lady, I’m fine. I knew my C.A.G. would most likely mutate up, so I was not too surprised. I can handle 43. I can fight with 43.

My lover wraps his arm around me and starts stroking my shoulder and arm. Does he know what this really means? I should ask.

I stop crying again, wipe the wetness from my face and simply ask, “Now what?”

Please tell me what to do next.

My mind returns to normal speed and it suddenly starts racing between every question I really wanted answered. What is the best doctor around here? Are there any in this building or across the states that I can talk to? How do I get a hold of them? Are there medicines I can start taking to slow things down? What research do you know of, or are you doing, that I can participate in? How do I get into clinical trials?

I can’t actually ask these questions, as my throat hasn’t caught up to my thoughts yet. Plus, I know the answers to some of them already but I want to hear it from her. I need something positive to come from her.

Her response is something like: “Take all the time you need to figure things out.”

What. Obviously not what I needed or wanted to hear. I’m not a sit-back kind of girl who waits for time to take control of things. I take control of things for myself. And you, the professional doctor who is supposed to be good at delivering this kind of news, are not being helpful.

Let me out of the room, please.

Silence… lots of staring… waiting for me to break down.

I know the psychiatrist, the social worker, and the genetic counselor are all ready to watch me break into a million small pieces on the floor. And honestly, before she spoke at all, that was what I would have expected from myself, too. But I’m not going to. I don’t need to. I want to take action. I want to do something right away. And all they are doing is staring at me in silence, snot and tear stains covering my face.

I want to melt into my boyfriend and disappear. I want to read his mind and feel his pain because I am alright and I want him to know that. I keep telling everyone that I am okay. The room is getting smaller and I am getting warmer and sweatier as my nerves and newly-lit fire combine and I want out.

“I’m okay.

The doctors ignore my desperate plea for release and instead prod me with questions, slowly and painfully. I get why they’re doing it. They have to make sure I won’t jump out of the hospital window or do something impulsive on the way home. But I have the two best people in my support system standing next to me. I have the best supporters waiting back home, texting me, and sending their love. I have people wanting to hear – people that I want to tell! Sitting in a small room that’s beginning to feel like a jail cell for an hour is not what I need.

My Boyfriend.

My awareness of his body and attempts to stay put together for me trigger something. I want to mourn the loss of my life for him, with him, but I can’t with all these other people watching.

Instead, I turn my head into his shoulder and cry. I cry hard. “I’m so sorry. I’m so sorry,” I repeat in my head.

I feel as if the doctor’s announcement ripped something away from him suddenly and unexpectedly, like discovering a wound you didn’t know you had. Now, it’s stripping away the rights of a future that everyone is born with, a right I now know I do not have. It’s destroying the possibility of us dying of old age together, from him more so than from me. I mourn the loss of our kids and any possibility that they may have held for him and for us.

“I’m so sorry.”

He doesn’t have to be here. He didn’t have to go through this with me. And he doesn’t have to stay. But I will actively love him more every single day. I will commit to spending my life with him in a way that will make this process easier for both of us in the end. All I have is now and the next few years before this disease takes over. My time to love him will be limited, while his clock will continue ticking beyond my wellness and into my illness, into the time when it is hardest to love someone who may not be able to love you back.

I will give him all that I have but I will not expect him to stay when my body is taken over and my mind starts to think he is evil. He can, if he wants, but I will not chain him down, because my love goes beyond him, beyond us, and into the eternal happiness I wish for him.

“I am so sorry for bringing this to you, for inheriting an illness that will take me away from you. You did not sign up for this. You do not deserve this. I am so sorry.”

Stop crying. They won’t let you leave if you keep crying

“Okay” I say, asking to leave with just that word.

They ask me what I am thinking about as I stare down at the floor and avoid their eyes.

I reply, “Who to tell first.”

The doctor responds with, “You don’t have to tell anyone if you don’t want to.”

I know this, but I’m going to, probably moments after I walk out of this door. I won’t sit back, I can’t sit back. I have to let people know. They have to join me in my fight.

I need to tell my friend who shares the same C.A.G. number as me first. I need to tell her that she is not alone. “We are twins.”

My mom.

I have to tell her. I start crying again. “I’m so sorry, Mom,” I think as I ignore the doctors stares.

I hope her memories of me as a young girl playing with chalk and imaginary dinosaurs in the driveway is not tainted. If my symptoms present themselves as schizophrenia and paranoia, I hope she still remembers me as her sweet little girl.

I hope when she sees me struggling with the involuntary moments that I will call my dance, she thinks of me at 5-years-old, swaying on my dad’s feet to our favorite songs. I hope she does not see my symptoms as a replacement of my dancing as a child, but views them as the same, just filled with a new purpose.

I hope she can still see me as a 2-year-old, throwing tantrums out of hunger or sleepiness, rather than the anger and emotional outbursts I may present in years’ time.

I hope she’s okay with her grandchildren being dogs and cats for the rest of my life.

I hope she doesn’t blame herself. She couldn’t have known. And I hope I can out-live her because I am not okay with placing this burden upon her shoulders.

My brother.

Because inheriting HD is a 50/50 chance, I can joke that he’s in the clear. I’m taking the bullet on this one and that’s the way I would have asked for it anyway, if I could have. But I am sorry, because we do not know. And I am sorry that you may be the caretaker for both your dad and your little sister.

You’ve worked so hard to build your career and follow your dreams. You deserve the rewards you receive from that and the peace that it should offer you and your future family. It is not fair, and I love you for encouraging me to test and place this burden on you. I wish we could go back to swinging outside, riding bikes down the street, and building snowmen together.

My dad.

How do I tell my dad? He hasn’t talked to me in over a month, and I am scared that he will feel guilty. “I am so sorry” I cry. I knew it would be this way. I felt it and I have known for years now. Maybe you knew too, Dad, and that’s why you were so scared. I really am okay, I promise. We have fought this fight together for fourteen years and I know we are prepared to fight it together for the rest of our lives. We will be okay, and I love you for making me as strong as I am and for giving me the weapons I need for this battle.

Stop crying. I say I’m okay once again. “I need to leave this room or I’ll keep crying.”

The doctor finally handed me the sheet of paper connecting my C.A.G. numbers with my alias, her signature sitting at the bottom as if she was signing my life over to this disease. She gets up to open the door. The doctors politely tell me to reach out to them if I ever need anything.

“Okay,” I say, assuming that I won’t.

Walking out the door means walking back into real life. It means that I will forever be surrounded by people who don’t understand, who will never understand. Forty-five minutes before, when I was standing here without the knowledge of having Huntington’s Disease in my genes, was the last moment in my life that consisted of this uncertainty. And with this new realization, the hallway becomes foggy, tainted over with the truth.

I don’t remember walking out. I just remember floating on feet that knew their way and wrapping my arm around the love of my life. A nurse in room C2 calls out “Have a good day!”

I burst out laughing. Reality hits. I start crying. Then in a confusing mixture of both laughter and sadness, my loved ones around me panic in attempt to see if I am okay and I start laughing again. I will attack this thing with humor and laughter, with love and joy. I will complete my days one at a time from here on out because that is the only way to get through it. My smile may distort over time, but I will never lose my laughter.

People keep telling me that despite my strength, I am allowed to break down. I am allowed to not be okay. But what they don’t understand, and what may just be my immediate reaction for now, is that I really am okay. I have lived the last 8 years assuming that I had this disease. Testing positive for the HD gene mutation means that I hardly have to change my plans. In a way, it is a relief to finally know.

Growing up with one parent in the household who also has Huntington’s Disease gave me the weapons I need to start this battle. I have been training for years and years, building up my ammo in preparation for the first bomb that signals the beginning of this war.

I always knew there was something living inside of me that didn’t belong and I felt that almost every day. There’s a little devil sitting on my genes, waiting to spring loose, and now that I know he is there, I can attack before time hands him the power to destroy me. He has limitations that I do not.

With each twitch in my foot and every stumble of my words, I can find strength in his taunting and turn it around. With all the evil he has planned and all the pain he has let me experience, I can build up walls and expand my army. I can join research trials and be a part of history in ways that other HD advocates may not be able to. I can tell my story to Congress and fight to pass the Parity Act. I can make the future better for myself and generations after me that receive the same news that I just have.

I have ways to fight that this little devil doesn’t know about. While he plays jokes on me, I prepare for war. This is more than just a battle against Huntington’s disease: This is a war for my life and my loved ones. I don’t need to say sorry anymore; I just need to fight. I am finally a Huntington’s Disease warrior and I cannot be stopped.

A Bond That Does Not Break

When people use the phrase, “I am HD strong,” one usually thinks that they are referring to the strength that comes from having or dealing with Huntingtons Disease. Though they are not wrong, they are not completely right, either.

This past week, the Huntingtons Disease Society of America held their 31st convention in Baltimore, Maryland. Over 900 people showed up to share their stories, learn everything there is to know about this awful disease, and to lend a hearing ear and a shoulder to cry on to those who needed it (and there were plenty in need, trust me). We all made so many new friends, danced, laughed, and above all, let others know that they are never alone.

Last year, I was completely new to the HD community, and my recent positive test results did not make socializing any easier. I had a really difficult time at first: “I could feel a headache setting in when I remembered where I was (or more like what I was there for). I just wanted to stay cuddled up in bed all day and stare longingly out of my window, but something that day coaxed me out from under my warm sanctuary, placing my feet on the ground and dragging me downstairs to one of the HD sessions.”

I did not want to be there last year. I did not want to take part in a whole weekend dedicated to reminding me of everything that I had been trying to forget. By the end of convention, I walked away with a new mindset on HD: “The rest of the weekend, I opened up to people I barely knew, but they understood my pain better than any friend I’ve ever had because they had experienced it firsthand. And I listened to their stories, my eyes flickering with empathy at the mention of the sickness that haunted our lives. In less than two days, I had a brand new family, and we helped carry each other’s burdens.”


This year, I was geared up and ready to go. Excited, even. But the lesson I took away at the end of the week turned out to be one of a considerably different nature.

On our first day of sessions, I decided to go to on called “Long Term Care: What To Expect.” Oh yeah, I was diving in really deep really fast this time, considering that my first session last year was on coping. I figured I could handle it-no big deal. Nothing I hadn’t heard before.

I walked into a small, crowded room and decided to post up in the back. The speaker began discussing ways to make your home a safer environment for the people who were in the physically debilitating stages of the disease. Her words started to become more and more distant as she went into feeding and hygienic care, and my heart started pounding so loud that I couldn’t do anything but look around the room. There were so many people who were in wheelchairs, twitching, grunting, fidgeting. When I looked at their faces, I swear I could only see mine. This was my future.

And I was having a panic attack.

I was also confused? I am no stranger to seeing people sick with HD,  quite often actually, and I’ve never reacted with such fear. I saw myself in their place, and I couldn’t shake my fate.

After taking a few moments to catch my breath, I stepped into the room next to the “Health Care” session, not really caring what might be going on inside.

There was a Jack Johnson song playing and a circle of chairs. I was still shaken up, so I sat on the ground in the very back.

This room was also full of very symptomatic people, but just as I was about to leave, they got up and started dancing. They danced around the room, with each other, snapping their fingers and humming along. The music continued to get louder and even more upbeat, and I couldn’t help but tear up when I saw how much fun they were having. They weren’t bored or anxious or frustrated, even though some kept bumping into each other. Everyone was having fun!

Even I began to forget that they were sick as their twitching began to blend in with their dance movements. I don’t think I’d had a happier moment at convention than the one that was right in front of me. For the rest of the day, my heart beat at a steady pace while my face held up a continuous grin.


The rest of the weekend was full of so much love and understanding, both that I received and gave (to the best of my ability).

When people were weak, others were strong.

When people were lonely, there were 50 people waiting in line to be with them.

When people were afraid, others showed them what brave was.

When people were uncertain, others reassured them that it was okay be unsure.

And when some people got a little too ambitious on the tequila shots and left without telling anybody, others ran around the harbor, fearing for her safety until she was found walking nonchalantly back to her hotel room.

Anyways.

This past weekend I learned what it really means to be HD strong. Being HD strong means that you are strong in every aspect, not just when it’s specifically related to Huntingtons. Because of my convention experiences, I have become a stronger daughter, a stronger friend, and a stronger, more independent woman. I realized that living with HD is a part of who I am, therefore it affects every aspect of my life. For example, I have never received more loving, open arms like I have at convention. This has taught me to be a better friend because I have seen how much great friendships mean to me and how much I need them, and I want to give that gift to others as well. Likewise, I used to feel extremely lonely without a boyfriend, but now I know that I wouldn’t trade the love that I received at convention for any man’s. And the list goes on.

And much like you saw in my experience while I was having a breakdown: Life is what you make it to be. In one room, I saw a crowd of people ill with Huntingtons, and in the other room, I simply saw a bunch of happy people dancing with joy.

I want to be the dancers.

I want to be HD strong until my very last breath.

Falling in Love

I’m in the process of writing an HD love story, and I have to say that it’s the most difficult story I’ve ever attempted to write.

Most of my days are spent searching for a home in my mind, and aching for the days when I felt “normal.” I’m the type of person who can be traditional and happy for days, and then all of the sudden, I’m scared to go outside, so it sit in my apartment with the shades pulled shut, hair disheveled, sitting in one spot all day, too anxious to move.

That’s when I write, and it’s a sweet salve to my wounds. I think this story will be beautiful, and I might be falling in love with the people I’ve created. Maybe that’s me falling in love with myself. I guess we’ll see:

“Our love runs deeper than the skin, deeper than anything they see, and it’s more than external, fleeting sensuality. Our souls mesh into one like it’s found its missing piece, and I’m so sure that through time, my love for her will only increase.
I’m stupid and plain, but she laughs at everything I say. I live a little more each time she smiles, and I think I might be fully alive someday. As long as she’s around to smile at anything, my heart will mend itself when I see she is healing. She doesn’t like her scars, but in them, I see history: the pain of her past is just a transparent accessory. And I love her, even when her tide is high. I’ll be her steady ground while I paint her a sunset sky.”