Transparency

I write a lot of articles on finding strength, hope, and purpose, but I feel like I am being dishonest if I fail to reveal my weaknesses. I need to be honest and transparent in order to move forward with my writing process. I do not want to be a figure that is looked upon as anything less than the embodiment of imperfection, and in that, I hope to bring a stronger sense of empathy to those who feel like I am stronger than them in any way.

I am not, by any means.

So, for my sake and for yours, I am going to ease into some subjects that have been weighing heavy on my soul.

  1. I have been waging a relentless war between wanting to help people and desiring undeserving attention through my writing. I am desperately trying to stray away from my selfish desires that consist of needing to be praised for pieces that are supposed to be centered around spilling my soul in order to bring healing to others (if it’s possible). I want so badly to be able to reach a point in my life where I can write selflessly and with a pure heart.
  2. I have at least one mental breakdown a day. I get stuck in my fears: fears of never getting married, never getting to have children, and becoming a burden to a family I might never get to have. And at the same time, I wonder if I will ever be able to reach a point where I can just become content with being alone in order to spare my potential family from becoming my caretakers.
  3. I struggle with my faith every day. I battle with bouts of a (seemingly) never-ending cycle of doubts that haunt me like dry spells as cracked as a dry and desolate desert. I feel so far from salvation, constantly. I can’t decide if I want to blame it on my mental illnesses or surrender to the fact that I am a habitual hypocrite. I fear that I might be too prideful to ever fully surrender.
  4. I still struggle with major body image issues. At times, I become so absorbed within my imperfections that I am unable to deem myself as anything but a narcissist.
  5. At times, I become completely lost and downhearted, and it often leads to me falling into self-destructive methods of what some might call “self-medication.” It never ends well, and I always wake up the next morning promising myself that I am strong enough to end this cycle. Alone, it is impossible for me, so I have to lean on others in order to make it through.
  6. I deal with so many mental issues already, and I can’t even fathom my mind’s continuous downward progression as the days fly past me faster than I am able to live in the moment. I am afraid of what my own brain might do to me. I am afraid of losing myself and the ones I love the most.
  7. Throughout the day, fits of jealousy swell within my soul when I look at other people who don’t have to deal with Huntington’s Disease. My friends often talk about growing old with the ones they love, and I become frozen in a state of unrighteous hatred for those who get to daydream about the future, after all of their hard work has been done, and get to sit back and enjoy the remainder of their days spoiling grandchildren and waking up early to watch the sunrise, sighing to their soul-mate, “We made it.”
  8. I often write that, despite all of our horrific struggles, there is always hope to be found and a war to be waged against it. Sometimes I believe it and sometimes I don’t. I am, however, a strong believer in the idea that you can know something is true in your mind without feeling it in your heart, and it still remains true. Love is not an emotion. Salvation is not a fluttering of the heart, and hope can remain a deep longing while still being present within who you are. That’s what I hold onto.

I am not writing this piece for sympathy or pity. I don’t even really know what prompted me to bring all of this up so suddenly after not writing for a while, but I desperately need people to read and realize that I am far from perfection. I believe that transparency is able to create a special bond between people–you are sharing parts of yourself that you’d rather keep in the dark, but instead you decide to trust others with your secrets because you want to be close to them.

I want to be close to all of you, and I hope that each and every one of you are able to find someone to share the dark parts of your soul with. If we truly love each other, then we should be able to open up and accept each other for who we really are.

It’s okay to show your scars, your weaknesses, and your struggles.

This is what brings us closer together.

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.

 

 

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}

Melissa’s

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Leah’s (Soon)

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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!


 

Cure For Paranoia: Creating a Cure for Mental Illness Without the Prescription

Ya’ll, this had to be the most fun interview I’ve ever done.

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This 70’s inspired hip hop/rap band is taking Dallas by storm, bringing along with them a cure for mental illness without the prescription. The lead singer, Cameron McCloud (formerly known as That Kid Cam) was recently diagnosed with Paranoid Schizophrenia, but instead of ingesting psychologically-approved pills in order to deal with his disorder, he decided to start a band that enables him to heal with his illness, inspiring fans along with him.

I decided to interview them in order to dig deeper inside of their inspirations, aspirations, and the message they are attempting to portray through their unique musical vibrations.

Let me start with an introduction:

Cameron McCloud– Vocalist/Lyricist (Suffers from Paranoid Schizophrenia)

Stanley Francisko– Vocalist/Lyricist (Suffers from A.D.H.D. and A.D.D.)

Jay Analog– Producer/Composer/Songwriter

Tomahawk Jones– Producer/Composer/Songwriter (Suffers from P.T.S.D. and Depression)

Me: How would you describe your band’s influences?

McCloud: We really like the 70’s vibe, both in style and in choice of music. Bob Dylan, The Beatles, and The Who play a big role in how we dress and the style of music we choose. Between my rapping and Stanley’s vocals, I think we create a good mixture of new-age music fused with the old.

MeHow did the band come together?

McCloud: I feel like it was meant to be. I was signed with another producer who didn’t give me much room for creative space, and then I met Stanley and Tomahawk. I decided to leave my old manager and kind of stick with them to see where the music went. We all decided to go on a road trip to Amarillo, Texas to avoid the predicted meteor that was supposed to crash in Dallas. We made music the whole way there, and it just kind of flowed perfectly. I knew that this was where I was supposed to be, and we’ve stuck together ever since.

Me: How did the name “Cure For Paranoia” come to be?

McCloud: I had recently been diagnosed with Paranoid Schizophrenia, and I definitely dealt with some challenges. I decided to let the music become my sense of medication rather than be stuffed with all kinds of different pills. I wanted the same for my fan base, too. I wanted to bring healing to them through lyrics that stemmed from my mental challenges; from my struggles, and I can see through our performances that there are plenty of people who are able to relate.

Francisko: I definitely wanted the same thing. I finally ditched the plethora of A.D.H.D. pills that I had been prescribed over the years and decided to let the music take place of all my medication. I’ve read that if you have water and sound, you can make light. We are all made of water, and Cure For Paranoia brings the sound. We have a job to do, and it’s to keep creating and listening to our audience’s needs because we have a higher message to convey to the people who need it, and there are a lot of people who need a safe place in the midst of the chaos within their mental illnesses. Our band is able to provide that. I remember, after one show, this girl came up to me crying her eyes out because she felt so touched by our music. We hugged, and I could feel her healing. That’s the kind of reaction we live for.

Me: Who writes the songs?

Jonez: We basically come up with different lyrics and beats during the day, and then we test them out at a venue during the evening. If we don’t get the reaction that we want, then we change things up until the song represents the type of sound that touches other people. It could be as simple as adding some clapping in the background, or speeding up the beat. It all depends on the song.

Me: What was your first song?

McCloud: It was kind of a miracle, the way it happened. I created a song called “Jupiter’s Funeral,” which was dedicated to my baby that had to be aborted. We named her Jupiter, and so I wrote a song about my baby who would never live. The day it was completed, Stanley (Francisko), sent me a picture of what looked like a big star, but it turned out to be a picture of Jupiter, which was the closest the planet had ever been to Earth on that night. It really spoke to me and reminded me that we are a part of something bigger than ourselves.

Me: How would you describe your fan-base?

Francisko: We call them “Fams” rather than “Fans.” We started out in Deep Ellum with a speaker set up in the back of our car. It was so cool to see homeless people dancing with business executives, really beautiful. Most of them have followed us ever since, coming to our shows and rehearsals. Even if we get really big, we’ll still think of them when we’re writing our songs. They are the reason we are here now. We would be nothing without them.

Me: Where do you hope to be a year from now?

McCloud: We have a couple of things lined up in Europe this year. We think if we take a break from the U.S., then we can make a really big comeback when we decide to tour in the states.

Me: Where can people buy/hear your songs?

McCloud: Right now, our music is exclusive to certain fans. We don’t have anything on iTunes yetbut there are some samples on our Sound Cloud. We are working on creating our first album, which will be self-titled. There are just so many songs we love to create and perform that it’s hard to choose. Once it comes out, the album will be available for purchase. You can also see some clips of our performances on YouTube if you want to experience a little taste of what we do.

Me: What aspects are the most important to your band?

Jonez: It’s important as artists for us to be historians and document the truth because we can’t rely on anybody else to do the job for us. We universally convey self-empowerment in order to allow people to see things as they really are rather than what they are force-fed through the media.

McCloud: There’s a quote from the comic “Z” that I love: “There’s nothing terribly wrong with feeling lost, so long as that feeling proceeds some plan on your part to do something about it.”

In conclusion, Cure For Paranoia is creating a safe, empowering environment for anyone who is looking for a way to embrace their mental illnesses. The guys were totally cool, and we hung out for hours talking about the meaning of life and coping mechanisms for the struggles that life throws at us. With their unique sound and established messages for the mentally unsound, the band is taking Dallas by storm, but with their kind of talent, they won’t be limited to one city for long.

In Cameron McCloud’s words:I’m okay, I’m okay with not being okay. It’s alright, I’m alright, I’m just trying to get by.”

Check out their website here: http://www.cureforparanoia.com/

Oh, and here’s a little EXCLUSIVE snippet of a song they’re working on:

 

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.

Rising Above It

By Leah Barker

I apologize for the poor grammar; I needed to get this off of my chest on a time-crunch before work!


I suppose I should start off by clarifying exactly what “It” is:

Hate. Cruel Words. Mocking. Carelessness. Hostility. Insults. Ect…

I’m writing this post in retrospect after I received a very hurtful message from someone who I once considered a friend. In my anger and pain, I posted the message on a Huntington’s Disease Support Group page in hopes of finding some comfort (which I did times a million because our community is awesome), but I was also wisely counseled into letting go of my hurt and rage. I also began to realize that my experience was one that many have shared and continue to share. Below are just a few examples from a small community in a big, big world:

Makes you kinda sick to your stomach, huh? I know it did for me.

And guys, this kind of thing happens to people with all kinds of mental/physical illnesses. The worst kind of people will see your sickness as your most vulnerable spot and then use it against you when they want to hurt you. It can hurt, and often does. It can make you angry, depressed, unsure, and left feeling with a need to retaliate, but you know what?

“It” doesn’t have to. 

I know first-hand that words like these can cut especially deep if they are coming from someone you love, but a person who claims to love you and care about you would never cross a line that thin. “It” has a name, and it’s called abuse. You do not need to have someone around in your life who uses your willingness to confide in them (with something as serious as an illness) to curse you with the same mouth the words “I love you,” come from. It is okay to cut people out of your life, but first and most importantly, you have to leave behind the grudge, the anger, and the hurt.

You can start by ignoring their comments altogether, no matter who they are. Trying to rationalize with a person who is irrational enough to use hate this way usually only adds fuel to their fire.

You then have to consider the “why” for their reasons of saying such hurtful things, and the answer is always the same: Because they feel insecure in whatever situation you both are in and they need to make themselves feel bigger and better by taking advantage of you.

Do you know what that means?

It means that the problem is not you, so you cannot let yourself feel belittled or low. Most of the time, people who hate like this have absolutely no idea what it is like living with whatever illness you have, or else they would surely be kissing your feet rather than speaking to you in such a heartless manner.

*I will make an exception to this when it comes to Huntington’s Disease, as when someone is sick with it, they become extremely mentally unsound and are prone to say all sorts of unkind things that they don’t mean. I know it still hurts.*

But look, this person or these people who use your illness against you wake up every morning, go to work, come home, pay the bills, and lay their heads on their pillows hoping to live a long and prosperous life.

You wake up every morning (with HD, with ALS, with Manic Depression), go to work (with Parkinson’s, with Tourette’s, with O.C.D.), come home (with Alzheimer’s, with Paranoia, with Schizophrenia), pay the bills (with MS, with Bipolar Disorder, with Dementia), and lay your head on your pillow worrying about how long your disease will allow you to live, long-term healthcare plans, medical bills, coping mechanisms, advocacy, and passing your illness along to children you might never get to have.

You are living your life times two. “They” don’t get that. They don’t understand that you are stronger than they could ever hope to be in every aspect because you do everything they do, but with a serious, incurable, fatal illness. And I’m not using those words to make you feel down, no, completely the opposite. When someone attempts to use your illness to make you feel small, I want you to look in the mirror and remember that you are amazing. Look at yourself, living your life, even if you’re having a hard time. Especially if you’re having a hard time. Look at yourself and realize that the people who see your illness as a weakness are blind, so do not hold anything against them. Your eyes, perhaps because of your illness, are wide open. And that this hateful person, who does not have to struggle with your illness, still needs to stoop down so low in order to make themselves feel better. “They” are the ones that are sicker than you, but not in a way that brings about strength.

Drop them. Leave them behind. Ignore them. They don’t deserve an explanation, and you don’t owe anybody one. Block out the hurt and the pain because when those words were said, they came from the other person’s hurt and pain, and it does not belong to you.

Even at your weakest points, you are stronger than them because you’re alive, which means you’re not giving up.

Rise above it.