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Fighting the Emotional Effect of Illness with a Wish

Anderson, Twenty One Pilots, Metro New York and Western New York, Make-A-Wish
There’s a side to being diagnosed with a serious illness that not many people discuss – and that’s the emotional side. We talk about the medicine and therapy that combats the illness while the psychological effects often make us too uncomfortable.

When you really think about it, though, that’s a huge part of the struggle for many kids. They feel different from their friends. They may look different. Their bodies may work differently. And they may have to deal with this through their entire life.

These feelings matter, and wishes help them cope: A recent study* evaluated 66 kids ages 5-12 using three respected, widely used assessment tools that quantify hope, positive emotions, health-related quality of life and anxiety. The data showed that having a Make-A-Wish experience caused a decrease in the perception of their physical limitations. The findings reinforce the need for interventions that enhance and promote quality of life. 

If you want to see how these findings manifest themselves outside of a clinical study, look to 17-year-old Anderson. He wished to use sign language to perform a song with Twenty One Pilots; after his wish, he wrote the letter below to the band and shared it with us. His words are a courageous look at the depression caused by his medical condition. He also addresses how his wish helped him cope with negativity and provides ongoing encouragement to be the person he knows he can be.

I hope that Anderson’s eloquence inspires you – and reminds you of all the good that is possible when you grant wishes. Be sure to check out the video, too!

-Justin, Wish Nation Publisher 

"Very rarely do I ever struggle with words, but for days now I've been unsure of what I want to say. There's so much, but I don't even know where to begin. I want this to be perfect, but I'm sure I'll think back and curse myself for forgetting something. So I'm just going to speak from the heart. 

I was born with Goldenhar syndrome, and part of that is the facial difference I have. I've had many surgeries in my life, including a tracheostomy tube, gastronomy tube, jaw surgeries, etc. Also I'm Deaf/Hard of Hearing and can't speak, so my native language is American Sign Language (ASL). Many people just see my face and think I'm worthless or inferior to them, but I know that I have the potential to be someone, that I'm so much more than my appearance and limitations. I guess that constant divide of how people view me and my own insecurity is the main reason why I struggled a year ago with depression and suicidal thoughts. I still deal with depression now, but I was at my lowest point a year ago. For some reason, I decided to get up one morning and record myself signing a song in ASL. And it just took off after that. 

At first, I just recorded my videos as a distraction from my thoughts, but it soon became an art form that I was invested in. I could express the meanings and stories behind so many songs, I could release all the emotions I couldn't say verbally. Because of my communication barrier, I felt alone, I couldn't get my thoughts out fluidly with anyone. So I just kept dragging myself day by day, making one video after another. I guess you could call it my own "kitchen sink," my own creation, my own sense of purpose, something only I could truly understand and feel truly empowered by. 

Then a friend suggested a Twenty One Pilots song. And man, I haven't looked back since. All your songs were conveying exactly what I wanted to say, but physically couldn't. Signing these songs was a type of therapy for me. Until I realized I wasn't doing these videos as a distraction, but that it had evolved to my own art that I loved and enjoyed. It's evolved to a YouTube channel called Andy Signs that people all over the world love and support, and that truly inspires me to keep going. 

This is perhaps a long shot, I know. But the song "Ode to Sleep", every time I sign it, for some reason I sign that one with the most emotion. To the point where my arms ache afterwards. I never realized why exactly. But recently I discovered that was the song I connected with most. "Why am I not scared in the morning? I don't hear those voices calling" was like that one morning a year or two ago when I woke up and thought "I'm signing a song on video." It was the start of me creating and finding purpose and being true to myself. It was the beginning of me "kicking the voices out." There are so many lines in that song I can relate to, but I'm going to wrap this up now. 

Sign language is who I am. I'm able to truly express myself and create art by signing all these songs. It would be a pleasure to share who I am and my art with my favorite artists and the two guys who helped me realize my potential to create and make a change in the world. I'd love to be able to sign "Ode to Sleep" while Tyler sings and Josh plays the drums. 

To sign a song with you two has been a dream of mine for a year now. You've helped me realize who I am, and the least I can do is give back to you by doing a song with the both of you. 

I may look a bit different, talk a bit different, but I'm still human. I'm an artist trying to make my way in this world. I just want to have the chance to feel that powerful strength of art and creativity with both of you in a video. To share who I am, and just in that moment, be an artist among artists.”

 

*Shoshani, A. Mifano, K. Czamanski-Cohen, J. (2015). The effects of the Make a Wish intervention on psychiatric symptoms and health-related quality of life of children with cancer: a randomized controlled trial. Quality of Life Research, 25(5), 1209-1218. doi 10.1007/s11136-015-1148-7

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Wish Nation gives you a behind-the-scenes look at Make-A-Wish®. See how wishes come together and how they change lives forever. Hear directly from those who work or volunteer here, or those who have been transformed by a wish. And learn why we are so committed to someday granting the wish of every eligible child, every year.

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