Since my childhood, I have always loved to sing. I remember often walking home from school singing in the rain and splashing the puddles on the way. Or dancing in song with the sunshine among the wildflowers where our family cabin resides in the Big Horn Mountains. Early on I found that my song brought smiles and tears to others.
Song heals my heart and soul even in the midst of the difficulties of living with severe chronic illness and pain. When I sing, my brain will block my pain or at least ease it’s edge for a small period. Sharing my joy with others also goes a long way helping me to integrate the emotional turmoil long term suffering can cause. Song keeps me sane.
As a teenager, I sang in my High School Swing and Show Choirs. Our jazz group was so exceptional that we were often given time off, during classes to perform for our mayor or other civic organizations. They would hire us through generous donations to our school. Singing jazz was a blast; I loved musical theater and developed a superb control of my timbre and pure soprano voice. My director recognized the natural talent and recommended that I start voice lessons during my sophomore year.
During the summer, I had almost died from a severely debilitating illness, where my whole colon filled with hundreds of bleeding ulcers. I had lost over 25% of my body weight by the time of my Crohn’s diagnosis at 16. My severe malnutrition led to TPN and the first of many lengthy hospitalizations, surgeries, complications and everything else the disease causes throughout a lifetime.
Early on in my life with Crohn’s, the disease was insidious by causing ulcers and inflammation in my mouth, throat, and esophagus. When damage got too close to my voice box, I would have to gargle with a unique compound mouthwash to get through a concert or solo. I had to give up my dreams of auditioning for a local opera company during my senior year due to inflammation in my mouth and throat. I missed performing for a Broadway scout who attended my theater’s performance of “Godspell” because I was on the sidelines due to painful ulcers near those vital vocal cords.
I found that others would recognize the ruthless of Crohn’s by if I was singing or not. I know that my parents were haunted by the silence in the house when my song was lacking there. Some of my favorite childhood memories are around the piano singing with my mom, my brother and I as my dad listened. During my first short-lived remission, they told my doctor how grateful that they had their songbird back.
Before Crohn’s, I could be heard singing in the shower, my sleep, while doing simple chores, or even on long car trips along with the radio. I can not even begin to express how much losing my song slashed my spirit. The most difficult times have been after numerous surgeries sometimes with tubes down my throat or the need for oxygen for long periods. Sometimes even unable to sing for months or years at a stretch.
My most raw hiatus from the song has been over two years in length. Not due to ulcers in my throat but massive amounts of scar tissue in my abdominal cavity. Breathing unhindered is crucial to being able to sing. It requires a lot of interior exercise and control to sing well. You could say it is a whole body experience. So living with a systematic degenerative disease can take so much out of you. That you can not even form a single note.
I also deal with nervous system damage that affects the strength on my right side of my body. So to sing in the choir at church, I had to be able to sit up in a folding chair. Not a good position for someone most recently diagnosed with centralized pain syndrome with c-fiber activation. All those vicious medical regimes and multiple surgeries under general anesthesia have wretched me inside out. I have begun to think I would never sing again.
Then a horrible event occurred after my 14th surgery, which had removed a lot of adhesion disease and 10 centimeters of the necrotic colon. A big section of my colon had died and caused a massive infection resulting in admission to prolonged home care. Due to being a stuck in bed and housebound for such an extended time I developed an enormous pulmonary embolism in my left lung. It almost killed me. I lived on oxygen 24/7 for over four months.
My occupational therapist was brainstorming about ways to get my lungs stronger as the PE healed. I told her I loved to sing, so she encouraged me to start singing again. Just softly at first, even while on oxygen. I had found Sing! Karaoke about six months earlier before all of those complications. It had physically hurt to sing; my voice was weak and very breathy.
After recording my first song following this last surgery, I cried hard. My voice was back in a way I thought would never be possible. Singing did not hurt; I did not have to stand to sing, and song eases my intractable pain. I have to admit that I am now a “Smule” nerd.
Through song, I have purpose even in my sick bed. I share my songs with others all over the world who suffer from chronic illness. Not only am I inspiring their spirits, but I am also lifting my own. Song the best medicine for this person living with severe fistulating Crohn’s Disease.
Song helps me to get through my toughest days. I will bless you with a song here. Consider it a gift to lift your spirit and ease your pain. This song expresses more than I could ever write.