Redemption Songs

January 27, 2024

Finally away from Mission and settled in to Four Seasons, we both slept comfortably and well last night.  Now that Jose’s brain is no longer trying to kill him (active brain bleed) his heart is strong and all vitals are ideal.  On waking I wondered  how many nights I have spent crammed into a hospital bed with this man.  If I had started keeping track back in 2009 it would be an impressive number.  It is safe to say that at least three months of our life together was spent between the rails.  The railway bed is 56.5 inches wide and the hospital bed a mere 36 inches.

In a journey like this, we have no idea what the patterns and touchstones will be along the way.  I love stories and I love quantifiable data.  What if I had kept track of the number of needle sticks, doctors appointments and pills administered? Those numbers would add such impact to the narrative.  How was I to know that our brain tumor story would encompass 15 years?

Redemption

On waking at 5 am I listened to the next dharma talk on the list and the topic was redemption.  This is a word that can have radically different meanings and emotions depending on religious and cultural context.  And then there is Bob Marley’s Redemption Song which is in a universe of its own.

Won’t you help to sing

These songs of freedom?

‘Cause all I ever have

Redemption songs

Redemption songs

“Won’t you help to sing” We are all invited to sing – there is no them, there is only us.  Our lives are dust to dust with redemption songs in between.  Freedom songs apply to many situations and certainly transitioning to the next world is a journey to freedom.   Especially for Jose who has faced ever increasing constraints from his physical body.  For our family, music is an integral part of progress to the next world.  On Monday evening when Jose was so critical our daughter Laura video called and sang Let It Be and Amazing Grace.  From Bogota, our daughter Natalie recorded Safe and Sound so Jose could hear her sing. The next day Epifano led several of us as we sang and cried through De Colores.  K, a brain tumor widow and beautiful vocalist sang Amazing Grace with Laura and I.   Sharing these songs transcends time to mingle with songs sung at many bedsides over the last 15 years.

At Duke in 2009, the daughter of a glioblastoma patient a few doors down on the neuro unit was distraught to be alone with her father far from home as he declined quickly after surgery.  Within minutes of meeting her earlier in the day I knew she was the bastion of a Southern Baptist church somewhere.  Sensing her anguish when I checked in after her father’s surgery I asked if she would be comfortable singing.  We wept through page after page of the Baptist hymnal until she was ready to lay her head on her father’s chest and pray until family arrived.

Laura and Jose and I sang and sang to my father over his months in the hospital. We covered The Beatles, Simon & Garfunkel, The Girl Scout Song Book and Appalachian classics.  He loved Laura’s interpretation of Swing Low, Amazing Grace and Shall We Gather at the River.  Then at hospice with my Aunt Lela Mae I experienced extraordinary sister harmony as my cousin’s wife and her sister sang How Beautiful Heaven Must Be.  The list of bedside songs goes on including Grandma Quinn and brain tumor friends Rob and George. I weep as I write and think of all the brain tumor patients, so many of them like Jose, young and bursting with life before being sucked into the vortex of a terrible disease. Gathering myself,  I step to the bedside to sing De Colores while holding Jose’s hand.  He loves color and he loves light.

These songs offer redemption to the transitioning soul and to the grieving family and friends.  They promise crystal clear waters, bands of bright angels and joyous reunions.  Lying beside Jose I thought of light and freedom and my own redemption.  I apologized again for the many times that I lost my temper and got frustrated over the years.  Then something slipped into my consciousness…those nights exhausted and discouraged when I collapsed into bed and was awash with regrets and what if’s.  I would wish that I had never met Jose so that I could escape the hellish consequences of being his caregiver.  I apologized to him and made a list of all the reasons I am grateful to have met him.  At the top of the list is having Natalie in my life as my beautiful daughter and as a glorious sister to Laura.  I am grateful for the knowledge of another culture and to have an understanding of what happens to people in the US immigration system.  Just like the brain tumor experience, immigration is surreal and dehumanizing;  one could never understand it unless you have actually been through it. Without him I would have never met my beloved friends in the brain tumor community.  If I had not met Jose I would have missed hours (actually days…) of dancing and lovemaking and hysterical laughter.  Our life together was intense in many ways, both beautiful and devastating.

Later in the day I met the chaplain in the hall and shared about redemption, appreciation, freedom and peace.  She lit up as she said, “You are already more than redeemed.  Your years of caregiving are a living sacrament.” 

Inconceivable as it may seem, in spite of extreme hardships, the last fifteen years consecrated both of us and our relationship.

“Love seeks one thing only: the good of the one loved. It leaves all the other secondary effects to take care of themselves. Love, therefore, is its own reward.”

― Thomas Merton