It is hard to describe the feeling I have today. On Sunday I lost something I have held on to throughout my life, even after Parkinson's Plus entered the picture. In spite of everything this neurological disease has caused, I have been been able to sing and play on stage. It is hard to get up and down on the platform at church, and I am not saying that there has been no effect on my musical abilities since I have been diagnosed these past seven years, but I was somehow always able to sing my song and play my own accompaniment, without failing to complete a song in performance. As a songwriter who performed concerts in my late teens and and twenties, a musician and singer who played in worship bands in churches off and on my entire life up to this day, as a wedding singer who performed as a minstrel singer often performing 4-5 songs during church wedding ceremonies as a side profession for many years, and as an entertainer playing for banquets, schools and churches up through the present, I have never failed to finish a song. Sunday, it happened. It was defeating.
I was singing the song, "Give Me Jesus," a traditional, historic song that I was singing and finger picking in a folk style. a portion of the lyrics read:
Verse 1:
In the morning, when I rise
In the morning, when I rise
In the morning, when I rise
Give me Jesus.
Chorus:
Give me Jesus, Give me Jesus
You can have all of this world
But give me Jesus.
 |
| Here I am in 1975 Singing in one of the Many Weddings in which I Performed. |
I had sung this and the second verse followed by the chorus and everything had gone well. Then, as a neurological patient, I came to the third verse, which trigged a weeping spell. This brought my collapse.
I began the third verse, singing, "When I come to die..." and as I went to repeat those words two more times as the song calls for, I opened my mouth and squeaked out, "When I come to die..." and at that moment I could barely say the word "die." My family was sitting in the second row and I realized the cruelty of those words. Having a disease which has an average life expectancy of 7-10 years, made these words sung as my family listened seem sad and cruel. I began to weep and the more I wept the less I was able to open my mouth and sing the words. I played the guitar and never stopped playing the accompaniment. I tried to mouth the words further and after a couple of lines, the choir leader named John, who was behind me, began to softly sing for me, and others joined in. Soon many were singing the words, as I wept and sobbed, continuing to finger pick my Guild guitar.
At the conclusion of my playing and crying, my wife and caregiver, Karrie, instinctively knew she needed to come up on the platform and guide me down. I don't walk well, having coordination and balance problems that interfere with my ability to walk. But more than that, I was an emotional mess, and I needed her comfort. We hugged in front of a full church which holds about 200. Others were shedding tears. My son, Mark, who plays the drums in our band at church, reached out and comforted me, touching my knee. I was deeply hurt, partly because of the mood these lyrics had brought out of me, and also due to the end of a lifelong ability to always deliver the song that I had never lost, despite my disease. Now, even that had succumbed to Parkinson's Plus syndrome. My heart was broken as my family members and my pastor comforted me on the spot. Pastor Brad indicated compassionately that they had all received a gift as a result of this emotional moment. These words brought assurance that not all had been lost.
I became aware that there is a condition that accompanies Multiple System Atrophy, referred to in one location as "inappropriate laughing or crying." In other references there is a term used for excessive crying as resulting from Pseudobulbar Affective Disorder and is found in brain diseases such as Parkinson's or conditions resulting from brain injury. Also, Deep Brain Stimulation surgery has been shown to result in an increase in PBA, a fact that is not lost on me as a DBS patient 6 months in recovery after surgery.
The trigger was the emotion that was induced by the third verse. The idea of singing about dying in front of my family members altered my professional ability to focus on my song performance. It triggered a never-before-seen lack of ability to block out the crying reaction that I normally control easily while singing and playing my guitar. As my wife said, once the crying moment began, I was "off the cliff and heading down." There was no turning back. This I had never experienced before and it had never happened while I was performing! Now, it has. I am dealing with this reality fine several days later, but deep down my heart is broken. I will never feel that sense of musical strength that I can sing any song and deliver the message in the lyrics for my listeners-- to lift, to encourage and to bless-- I lost that feeling Sunday. Of course, I can choose my songs carefully and I am not overreacting, but this for me was an important marker.
Will I go on singing? You bet I will. I now know that this emotional lability* (see below) was always a possibility and is more so now. I won't quit singing in public because it is who I am and what I do. I won't say that the song selection was the problem, because we didn't know based on my history that this would happen. Now that I know of my potential to go off the cliff emotionally, I will look at each solo with care and be sure it will not be too sensitive a subject to share on stage with my audience. WE WILL GO ON and that includes singing and performing. -- Patient-Online
* Emotional Lability is defined as: Pseudobulbar affect (PBA), emotional lability, labile affect or emotional incontinence refers to a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays. PBA occurs secondary to neurologic disease or brain injury.
Author's Note: I want to add that there was a silver lining in this experience. The people at Magnolia Presbyterian Church, where we have gone for 10 years this coming July, showed a lot of love with a standing "O" after my song with the broken performance. There was an outpouring of hugs, words of support and kindness that was shown. My Pastor told me that he would welcome me to sing again without reservation. It was a special affirmation, and very much like the church we know-- full of loving people and leaders who care. Throughout my experience with Parkinson's Plus they have been there for our family and supported me as a musician, as well. We are always grateful for our Magnolia Church Family!