Music and Cystic Fibrosis – Love and Healing
To say that music is healing is a vast understatement. To me, music means having the ability to get lost in rhythms that warm your soul and transform your pain into joy. And when creating music, I find the experience to be even more powerful.
I was diagnosed with cystic fibrosis, a genetic lung disease, at age 4. For the past 20 years I’ve received the best care from the most amazing pulmonary team at Cincinnati Children’s. Currently I have 17 percent lung function and am awaiting a life-saving double lung transplant. Because Cincinnati Children’s cannot perform the procedure on adult patients, I was officially listed for transplant at the Cleveland Clinic in January 2011, then decided to get dual listed at the University of Kentucky in Lexington in October 2014 to increase my chances. I am currently No. 1 on the list for my blood type.
With such low lung functions, and a constant need for oxygen, there isn’t much I’m able to do without being physically exhausted. But, one thing I do enjoy is playing music with the person I love most – my boyfriend, Ty, a musician. I’ve always been a firm believer in hope and that if you hold onto it, hope can pull you through the darkest of times. I’ve found hope in music and Ty. He’s made me a believer and made me see that our future is filled with an abundance of life.
Before we started dating I never played much more than a few songs on the piano. Now, although I will not classify myself as a rock star, yet, I can hold some steady beats on the drums. A highlight of every hospital stay is venturing to the music therapy room at Cincinnati Children’s where I take a seat behind the drum set, Ty plays the electric guitar and Caleb Hastings, music therapist, jams the bass.
In that hour of playing music, I lose sight of where I am. In my mind I’m not in a hospital. I don’t feel the cold that roams the hallways. I don’t feel isolated. I don’t feel fear. But instead, I feel safe and in control. I feel brave. I feel strong. My mind is at ease, even though my hands and feet are constantly moving. I feel healing in the fact that I am able to block out pain and fully concentrate on making music. It’s so easy to hear music, but when you can feel it, that’s when you know you have it.
I feel truly blessed to be in love with an amazing musician. Watching him play, doing what he loves most, all while spreading happiness to others in the form of song, is simply indescribable. Music spreads love. Ty and I share a love for music, and since we’ve dated he has opened my eyes to such a wide variety of music that I never knew existed.
For us, live concerts and music festivals bring so much happiness and positivity into our lives. However, now with my need for oxygen, it’s very hard if not impossible to attend these events. So for Christmas 2014, Ty gave me the surprise of a lifetime by revealing his plans to bring the festival to me. He secretly organized the SamJam Music and Arts Festival, a family and pet friendly nonprofit event. The festival is coming up April 2-5 in my hometown of Manchester, Ohio, just northeast of Maysville, Ky.
After months and months of planning, the details are set and we are ready to jam! Seventeen bands are playing Friday and Saturday, and a DJ will kick it off Thursday night with a dance party. We will have live painters, performers, belly dancing, yoga, and drum circle workshops. Fun and crafty vendors will offer a variety of food, and we welcome everyone to camp out through the weekend.
All proceeds from the festival will be split to benefit my transplant fund and the Cystic Fibrosis Foundation. We hope to do some good and spread some love, hope and happiness. In life you have to find the things that fill your heart with happiness, make you want to wake up every morning and push you through each day. For me it’s been music.
When those around me seem worried about what will make them happy 10 years from now, music reminds me to live for today because tomorrow is never promised. Within the rhythms and beats there is a kind of happiness that can be shared with those we care most about, and that’s all that matters today. So live, love, laugh, inspire, and pick up a couple of drum sticks; it might just change your life!
Editor’s Note: Local 12 reporter Brad Johansen recently shared Samantha and Ty’s story with WKRC-TV viewers. Watch it online here: https://goo.gl/2wvMly
Update: Congratulations to Sam and Ty who were engaged at the SamJam Music and Arts Festival on April 4. Eleven days later, the couple learned that a donor match was found for Sam’s double lung transplant. We wish them all the best!