On a beautiful Sunday, August 14, 2016, I made my final profession to the Secular Franciscan Order at Holy Trinity Parish with the Maximilian Kolbe Fraternity. A day full of grace and new beginnings. Pax et Bonum!
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.
Music: “Dry Bones” by Gungor
Video found on Phil Van Eck Youtube Channel
“The hand of the LORD was upon me, and he brought me out by the Spirit of the Lord, and set me down in the midst of the valley; it was full of dry bones.” (Ezekiel 37:1)
These past few months have been difficult ones and that is why I have been away from my blog. As my last post in November stated I was late due to being sick. Those daily low grade fevers with severe pain continued through mid January and I was even hospitalized for 3 days just before Christmas.
During this period I also lost my apartment and had to move into my parent’s basement. Thank you Lord for family who loves us. Thank you Lord for those who serve others in need. I still find it disheartening that the sick often face homelessness in our country. I have surely been blessed though for I have a warm bed to rest these cold dry bones.
My malaise continues but we now understand better what is going on with my body. I will be going for a surgery consult in Denver in a few weeks because my gall bladder will need to be removed. We do not know if the surgery will help ease my symptoms and since this is my ninth surgery related to complications from Crohn’s we do know it will be complex in nature. We had to wait for a while because I developed a severe case of leukopenia which is where one’s white blood cells drop really low.
That problem has reverse naturally but I had to sequester myself at home as best I could. Even a simple cold could have been life threatening because I would not have been able to fight it. But I digress on the purpose of this reflection: Cold Dry Bones.
As I prepare for what lies ahead, I’m struck by the frigid tempatures outside. Just last night it got down to minus eleven degrees and wind chills down to minus 44. It has been such a harsh winter for so many of us in the states. I know for those of us who suffer from chronic and severe illnesses, frigid temps often mean more suffering and more pain. The cold is so harsh and makes our daily lives feel endless and meaningless. I know that during this period of suffering I have been feeling very dry.
When I was younger in life and experienced dryness in physical and spiritual life I use to feel panic. I saw that type of suffering almost like a punishment. But as I have grown closer to Christ I now understand that I am drawing so close to Christ on the cross that I can not see or feel his presence. He is hanging on the cross in death. Death is always cold and dry. So how can our hearts our souls not taste a bit of the cold and dryness He experienced in his passion.
In the midst of this mystery, those who experience this cold dryness are given a tremendous grace to grow deeper into Christ. We can choose to surrender ourselves, to offer our pain and to suffer with him. I find that I have to cling to the cross I share even though my thumbs and even my heart-strings are torn and numbed by the experience.
What does one do in the midst of the turmoil of chronic illness? How does one continue the fight to cling faithfully? How does one find hope?
The answer is simple. In the holy darkness. Yes, it is as dark and dry as a closed tomb. It is even scarier then the cold or pain of the cross. In that darkness we are alone. We are invited to enter the holy darkness of God. It is beyond our understanding and comprehension. But in the midst of that darkness, if we are truly receptive, God can do his best work in us.
Many saints and mystics share with us the darkness they have experienced during their lives. We can find strength in their words during our own dark nights. Here are a few:
- Blessed Teresa of Calcutta wrote to her Archbishop in 1961 to explain the condition of her soul:
“There is so much contradiction in my soul.—Such deep longing for God—so deep that it is painful—a suffering continual—and yet not wanted by God—repulsed—empty—no faith—no love—no zeal.—Souls hold no attraction—Heaven means nothing—to me it looks like an empty place—the thought of it means nothing to me and yet this torturing longing for God.—Pray for me please that I keep smiling at Him in spite of everything. For I am only His—so He has ever right over me. I am perfectly happy to be nobody even to God. . . . “
- Saint John of the Cross wrote once to a nun during a time of great trials:
“Do not let what is happening to me cause you any grief, for it does not cause me any. What
greatly grieves me is that the one who is not at fault is blamed. Men do not do these things, but God who knows what is suitable for us and arranges things for our good. Think nothing else that God ordains all, and where there is no love, put love, and you will draw out love. “
- Diary of Saint Faustina:
“Jesus says; ‘My daughter, I want to instruct you on how you are to rescue souls through sacrifice and prayer. You will save more souls through prayer and suffering than will a missionary through his teachings and sermons alone. I want to see you as a sacrifice of living love, which only then carries weight before Me… And great will be your power for whomever you intercede. Outwardly, your sacrifice must look like this: silent, hidden, permeated with love, imbued with prayer.”
- St. Louis de Montfort, “Friends of the Cross”
Be resolved then, dear Friends of the Cross, to suffer every kind of cross without excepting or choosing any: all poverty, all injustice, all temporal loss, all illness, all humiliation, all contradiction all calumny, all spiritual dryness, all desolation, all interior and exterior trials. Keep saying: “My heart is ready, O God, my heart is ready” (Ps. 56, 8). Be ready to be forsaken by men and angels and, seemingly, by God Himself. Be ready to be persecuted, envied, betrayed, calumniated, discredited and forsaken by everyone. Be ready to undergo hunger, thirst, poverty, nakedness, exile, imprisonment, the gallows and all kinds of torture, even though you are innocent of everything with which you may be charged. What if you were cast out of your own home like Job and Saint Elizabeth of Hungary; thrown, like this saint, into the mire; or dragged upon a manure pile like Job, malodorous and covered with ulcers, without anyone to bandage your wounds, without a morsel of bread, never refused to a horse or a dog? Add to these dreadful misfortunes all the temptations with which God allows the devil to prey upon you, without pouring into your soul the least feeling of consolation.
Firmly believe that this is the summit of divine glory and real happiness for a true, perfect Friend of the Cross.
Challenge for this week: Search for a saint to travel with you during this time of darkness, of illness, of trial. Ask them to pray for you and walk with you. Trust that they are your friend in heaven and they want to help you on your journey to the cross with Christ. Find a story, book, or prayer that you can keep of copy of near your bed. Read these words of encouragement in your dark dry cold times this week.
Search for a saint: http://saints.sqpn.com/
Are you in despair pray this simple prayer:
Lord, I am in this world to show Your mercy to others.
Other people will glorify You by making visible the power of Your grace by their fidelity and constancy to You.
For my part I will glorify You by making known how good You are to sinners, that Your mercy is boundless and that no sinner no matter how great his offences should have reason to despair of pardon.
If I have grievously offended You, My Redeemer, let me not offend You even more by thinking that You are not kind enough to pardon Me. Amen.
~St. Claude de la Colombiere for a young religious at the point of despair.
Rest in trust during darkness by watching or listening to the video below.
Music: “Satisfied in You” by the Song Team
Video found on YouTube.
Store Up Treasures by Burlap to Cashmere
“Do not lay up for yourselves treasures on earth, where moth and rust consumes and where thieves break in and steal, but lay up for yourselves treasures in heaven, where neither moths nor rust consumes and where thieves do not break in and steal. For where your treasure is, there will your heart be also.”
~ Mat 6:19
Treasures are something of extreme value. People watch with an expectation for the considerable appraisal of a rare and precious item during an episode of the Antique Roadshow. We get excited when we see things prized. We want to protect our accumulated things and keep them close. We need to be in command of these treasures upon the earth.
When one is chronically or seriously ill, the things we treasure most are eventually taken away from us. We lose the ability to travel or take a vacation. We might be too sick to work or join friends for an evening out. We may lose the ability to talk or to walk due to progressive disability. We are unable to hold the treasures upon the earth. We no longer possess them because they are the things of dust. They will all pass away.
We do have tremendous riches waiting for us to store, things that will not pass away. These treasures are not of the earth but are eternal tokens of love that we gather not just for ourselves for but others as well. Our illness or disability become the very medium to receive these treasures. When one lives with this truth, the burden of our toil becomes easier to bear. For we begin to engage in the realm of heavenly treasure hunting. Even the weakest among us can engaged in this activity.
How does one engage in this heavenly treasure hunt? A hunt that can take place even while trapped in a hospital bed or broken body? Easy – through little acts of surrender and supplication.
Let’s define these two acts. Surrender is the intentional act of accepting something that you have no control with meekness or docility. Supplication is offering up a prayer or petition with love and humility before God. They are the two means one needs to hunt for heavenly treasure successfully.
One does not need to speak or pray a certain way, just a movement of the heart will do. Practicing this when one is having a good day and making it a habit prepares these little movements of the heart easier on the really hard days. Trust that God knows the deep intention of your heart.
Sometimes when one is in great pain, the words do not come easily. The spirit can work miracles with the right intention, When one stuck in a bed or a shut in, the heart becomes natural sanctuary of hidden prayer. “When you pray, go into your room and shut the door and pray to your Father who is in secret. And your Father who sees in secret will reward you.” (Mat 6:6)
One can begin to understand why those old souls among us say their illness or disability is the greatest gift they have ever received. They may already have many treasures in heaven stored away. What treasures does Jesus have in store for you today?
Challenge for this Week: Begin storing up treasures in heaven this week by practicing little acts of surrender and supplications. They can be simple ones. When you have to bear a needle or a medical test that must be done tell Jesus, “Take this for your will, your desire, not mine.” Accept the needle or examination with joy and peace within your heart. Ask Jesus to use this pain, this struggle or this inconvenience for his perfect need or work.
Know that Christ is right there with you as you live through this pain. Remember that this simple act becomes a token of love for him. Any tears shed are precious gems he catches in the palm of his hand. If you struggle with surrender and supplications, pray the prayer below by Ignatius of Loyola. This simple prayer is not always easy to say. If you trust Jesus enough it will help you on the journey to hunt for treasures in heaven.
If this is still too hard to do, there is a musical reflection of the prayer written and song by a follower of Ignatius that can help you to open your heart to the treasure Christ wants to give you. There is even a PDF file to print out a simple prayer card to keep.
Pray This Simple Prayer: Take, Lord and receive my memory, my understanding, my entire will, All that I have and possess. You have given all to me. To you I return it. Dispose of it entirely according to your will. Give me your Love and your Grace this is sufficient for me. Amen.
A prayer card (PDF file) to print as a gift from the Jesuits click here.
Take and Receive by Savio Freitas
A young Jesuit missionary and musician serving Christ in Timor Leste, Indonesia and elsewhere.