Healing Pain Through Song

Janelle sings in bed or an easy chair due to intractable pain.

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.


I Am Restless

Music: “Restless” by Audrey Assad

YouTube: created by musiclyrics001

“Great are you, O Lord, and exceedingly worthy of praise; your power is immense, and your wisdom beyond reckoning. And so we men, who are a due part of your creation, long to praise you – we also carry our mortality about with us, carry the evidence of our sin and with it the proof that you thwart the proud. You arouse us so that praising you may bring us joy, because you have made us and drawn us to yourself, and our heart is unquiet until it rests in you.”

~ Saint Augustine, Confessions, L1

I have been finding myself becoming very restless lately. One reason I know is the cabin fever caused by the long deep freeze we are thawing out from under. In Wyoming, we are even more restless because we know nature is only toying with us – giving forty to fifty degree weather as a temporary reprieve from arctic blasts. Soon we will be shivering – longing for the beaches of Hawaii or golf courses of Arizona, or some other warm place.

This morning I woke up, rather rudely, due to a major blow out of my permanent colostomy system. A living reminder of another cause for my restlessness – the endless waiting for a surgery to correct a malfunctioning stoma area and remove a failing gall bladder. With my twisted sense of humor, this event just added fodder for my post on restlessness.

Last week, I shared a little bit about what I am dealing with almost on a daily basis. I have chronic peristomal pyoderma gangrenosum. My current PPG activity is like the more extreme photos found on a Google search here. [Warning! do not visit if you have a weak stomach or children around.] Currently, I have four ulcers with only the smallest one still at the epidermis level of the skin. This complication is extremely painful. Literally, if one were to hold their hand a few inches above an inflamed area you’ll feel emanating intense heat. The problem is that active PPG bleeds profusely, thereby making a good seal almost impossible. There-go a blow out at 4:30 am when one should be able to sleep peacefully in their warm bed. Talk about a restless way to wake up.

But do not despair for me. Even though it caused extreme physical pain at 4:30 am this morning, I am still smiling. There might also be a little Wyoming grit in my flawed personality that helps me deal with it. Jesus is the only one who can get me up at that hour to clean up and slap another bag doomed to fail on top of bleeding ulcers. My nightgown was not even soiled because I was woken moments before it happened. Thank you Jesus and my guardian angels, amen!

Let’s get back to restlessness. For those of us who are always sick we have an intimate knowledge of that word down to the very core of our being. Many diseases and illnesses cause a physical restlessness or anxiety reaction within our bodies, that can affect movements, nerves, nerves, muscles, sleep, pain perception, and definitely mental function, . RightDiagnosis.com (here) lists over 380 medical conditions that cause restlessness and thousands of conditions that are related to restlessness. Even medical professionals classify restlessness as a natural stage of the human dying process. The restlessness we experience from our cloistered hospital beds or homes can make us feel like we are dying even if we aren’t.

These forms of restlessness I have described above are about mental or physical suffering. The type of restlessness that Saint Augustine speaks of in his Confessions is a spiritual reality of the frail human condition. (see a cool website with his PDF file Here.) OK, a little bit of heavy reading! I am feeling a bit restless, now. Lets break it down a little and learn more about Saint Augustine at the same time. Here is a FUN video about him and his experience of this type of restlessness. Warning it is a rap for Catholic theology students with some puppets, need I say more?

Music: Confessionz (St. Augustine Rap Remixed) by by Chris “MCG” Gehrz

Found on YouTube: CWCRadio  (full lyrics under about tab)

Now that was a fun way to learn a little bit about a doctor of the Church. A testament for how God will use our loves and desires to pierce our hearts. Helped relieve some of my physical and mental restlessness too.

Let’s get back to the seriousness of our discussion. Restlessness is not necessarily bad. It is like a warning signal not just to the body, but to our spirits as well. Restlessness always points to a yearning or longing. When our body’s are broken it’s a physical symptom of our body crying out for wholeness. When our emotions are torn to shreds it is a emotional signal that something needs to be worked out. Saint Augustine shows that spiritual restlessness is a reaching out for God and a necessary capacity of the human condition. Restlessness is always hard and at times quite painful.

The broken restlessness of our sick bodies are actually a testimonial to the complex nature of the very creation of human life. When something breaks we have blow outs. When we experience physical or mental restlessness our body cries out for physical and mental integrity it knows it was designed for. We only get little fleeting tidbits of of body integration on a very good day.

When we experience spiritual restlessness it means that our spirit longs for God. We are being invited to engage in relationship with the one who created us and our wonderful human body. We just know deep down inside that this longing cannot be fulfilled in this life – only in the next. We just get a brief glimpse of the hope of the resurrection of the body and the perfect union with God in heaven.

Challenge for this week: Cling to the knowledge that in this life there will be restlessness and that we will all experience it in different ways and different stages of our lives. We need to learn to trust that even though this moment maybe an extremely difficult one. We are never alone. We are always loved! Think of it! At that moment when the intense gross reality of human frailty glares at you smack in the nose. Even restlessness is as much a gift as the mess and pain one faces.

I actually had a wound care specialist talk about the art of healing horrible PPG wounds. It was fascinating for me to listen to her speak on the deep wonder she had for the complexity of the human body. The absolute uniqueness of every patient she saw. No case was ever the same. What works for one doesn’t work for the other. Some cases may be similar but they are always unique.

When faced with the grossness of the reality she faces in her work, instead of running away, she is inspired to heal and ease the pain. She said she often prays as she works, praying that God guides her hands. Not surprisingly, she had the most gentle touch I have ever experienced.

More amazing, God created bodily fluids – yucky!  But his ways are not our ways. He loves us more then we can even imagine. In his great love he gave us his son on the cross. His passion, as a brilliant 8th grader told me, “that was really gross, I almost threw up!” Talk about restlessness.

So are you as restless as I am?

Let us pray to be stilled as only God can!

Psalm 46

“God is our refuge and strength, a very present help in trouble. 

Therefore we will not fear, though the earth should change, though the mountains shake in the heart of the sea; though its waters roar and foam, though the mountains tremble with its tumult.

There is a river whose streams make glad the city of God, the holy habitation of the Most High. God is in the midst of the city; it shall not be moved; God will help it when the morning dawns.

The nations are in an uproar, the kingdoms totter; he utters his voice, the earth melts.

The Lord of hosts is with us; the God of Jacob is our refuge. Come, behold the works of the Lord; see what desolations he has brought on the earth. 

He makes wars cease to the end of the earth; he breaks the bow, and shatters the spear; he burns the shields with fire.

“Be still, and know that I am God! I am exalted among the nations, I am exalted in the earth.”

The Lord of hosts is with us; the God of Jacob is our refuge.”

The Word of the Lord. Thanks Be to God.

Need to calm down more then let us rest together below.

Music: “Be Still” by Kari Jobe

Found on YouTube: KatyeIreland