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| Susan Edwards 2023 - Used by Permission |
In recent posts I have filled you in on all that is going on with my brain and body. Both atypical parkinsonism, a tracheostomy, feeding tube and now kidney cancer have combined to make life discouraging at times. So much to contend with which requires me to remain home 95% of the time, confinement to a wheelchair a good portion of my day, eating liquid food through a tube in my stomach, and sleeping with my trach tube attached to a ventilator to keep me breathing while sleeping each night are all part of these realities. How do I make the most of the life I still have?
There is so much to live for and I am ambitious to learn and accomplish things. I still have my music, writing, online groups and being available to friends and family to help in conversation and encouragement, when needed, which are all important factors in finding motivation for pushing on. Let me tell you a bit about my friend who painted the art piece shown above.
Susan Edwards is a close friend I met in our high school youth group. She is married to my lifelong friend Gary Edwards. I met Gary in junior high school youth class at our church in Long Beach in the 60's. Susan suffers from nerve impingement from spinal stenosis in her back, and in her cervical area, particularly. This has made Susan's existence limited physically due to a lack of feeling in her hands and difficulty coordinating her steps in order to walk with proper balance and strength. What does Susan do with this life that is is limited by constraints on movement and the ability to get out of the house and experience things most of us take for granted?
Susan lives a life focused on her Christian faith. She spends a lot time praying for those she loves and whenever given the opportunity she devotes herself to artistic expression. Her paintings are often reflections of the inspiration she gains through faith that connects to reading the Bible and prayer.
The above painting is so illustrative and brings solace to me as I look at it. Susan has her explanation of what this beautiful painting reflects in her thoughts and resulting intended metaphors. My response to it when she shared it with me-- by way of encouragement when I was going through various surgeries on my tracheotomy and kidney cancer-- was that it represented an open gate leading to the rest God offers to all of us through His grace.
I see the familiar architecture of the California missions, emulated throughout our communities in schools, college buildings, hospitals and churches, among other structures. This path leads to restoration and hope. You may see other ideas in this picture. I love the way the courtyard is seen through the realistic wrought iron gate that is symbolically inviting us to an available place of graceful contemplation.
Susan is an example of finding purpose in the midst of suffering. I too have a daily struggle to find such purposes. For me it is connecting with my family-- my dear wife, our three marvelous sons, our supportive daughters-in-law, and our six grandchildren-- who brighten my skies so frequently. Also, I have three groups that meet online through Zoom, regularly. Two are for specific diagnoses that I have-- Corticobasal Syndrome and Multiple System Atrophy. These give me support, but they also give me a chance to encourage and provide caregivers and patients another individual willing to share his own difficulties and solutions.
The third group is our weekly Bible study with a church in Monterey, whose pastor meets with us weekly and we read through and study books of the Bible. Those hour-long discussions, and times of bonding as brothers, provide me with a point of contact and an opportunity to give and receive. These online groups are irreplaceable in the big picture that is my life going forward.
Music continues to be paramount for me, though the hole in my airway has changed my ability to sing, something that was always central to my joy in performing for others. Now, I have the ability to sing on a limited basis by putting a cap on my trach opening called a Passy Muir Valve. This valve allows air in, but but not out, through a membrane in the opening of the cap. This then lets the air I take in travel up through my vocal chords for those times I want to make a video singing for my audience on YouTube. Sure, my voice is older and limited by the partial paralysis of my vocal chords, but I still have a drive to sing, hopefully bringing hope and enjoyment to my viewers, who are so faithful.
This decreased ability to sing, has caused me to pursue instrumental improvement. While I once had a melding of my voice and guitar that inseparably allowed me to send out a message through song, this is no longer the case. I could never see the guitar, that I began to play 61 years ago as a child-- once being an integral part of my music for the purpose of weaving rhythm and harmony in partnership with my voice-- becoming the point in itself, instrumentally.
Today my mandolins and guitars, though my coordination from my neurological disease has lessened my abilities, have become nearly the entirety of my musical expression. What I work on now is chord melody, which is defined for me as playing a tune while also playing the chords on the same instrument at the same moment. This produces a complete composition and performance as I imagine the words I would be singing in to the tune.
Here is an example: