By ~ Meg Bernard; small girl with parkinson’s
I wrote and performed this song for the Parkinson Alberta ‘Hope Conference’ two years ago this week. It feels like yesterday until I realize how much has happened during the past two years in my ‘PD world’.
This performance was a significant event for me, not only because I enjoy writing, singing and performing something that I hope sends a message of strength and courage to my PD family; but also because it was after this performance that; due to my the ever increasing severity of the symptoms of my disease; I made the decision to retire my guitar, my voice and my song writing.
I had lost the ability to play the piano a few years previously; I had come to accept this and was grateful that I still had other ways of creating the music I love; but while performing and then afterwards while watching this recording of my performance I realized that continuing to try to use these gifts was becoming a heartbreaking experience. I felt no joy as my hands fumbling through chord changes; I felt discouraged and insecure when trying to use a voice that ‘once upon a time’ I had complete confidence in; I could no longer trust it to do what I asked of it. What was once a joyful, exciting and fun thing had now become a complete frustration; I found that by continuing to try to use my hands and voice as I once had only made the reality of the downward slope of my disease more painful, both physically and emotionally. So this performance was to be my finale.
BUT this past September something magical happened. I was presented with an opportunity for a ‘dream come true’ experience. I was invited to perform some of my original songs at the World Parkinson Congress (WPC) which was being held in Portland. I had a tough decision to make. It had been a year and a half since I had picked up my guitar and I hadn’t kept up with the necessary vocal exercises that help keep a voice strong. My insecurities hit hard and I almost said no; then it struck me…this had been my dream since the previous WPC held three years before. Was I actually going to let this disease stop me from living it? Yes, I knew that it was impossible to play and sing as I once had, but if ever there was a forgiving crowd it was this one; a room full of other people with PD, their care partners as well as medical professionals; all of whom would understand exactly what I was up against.
There were definitely tears of frustration as I attempted to prepare; I almost backed out a few times; but when the time came, my guitar and I were both on the plane to Portland.
I’m proud to say that I got up on that stage with a feeling of confidence. My performance was far from perfect but I did my very best and sang with all of my heart; but it was AFTER I had finished my performance that the true test occurred. I had been sitting on a stool as I played my guitar and sang, and upon finishing I discovered, with mounting panic; that I couldn’t let go of the guitar; my hand was seized in place; I also found that I had become a statue as I sang and there was no way that I could get off of the stool on my own. A hundred thoughts rushed through my mind in the matter of a few seconds as I tried to figure out how to extricate myself from what I thought to be a most embarrassing situation. I then experienced a ‘burst of light and knowledge; I realized how prideful I was behaving. I remembered that I wasn’t the only one in the room who would be in exactly the same boat I was; and more likely had experienced such situations while surrounded by strangers as opposed to an audience who would completely understand and think no less of me. So I put my mouth up to the microphone that was on the stand in front of me and said two simple words, “I’m stuck”.
I was immediately embraced with support. I felt the guitar being pried out of my aching hand; followed by someone very gently helping my painful and aching body onto to it’s feet and safely back to a seat in the crowd. What I remember most clearly and with great emotion is not my singing; not what I worked so hard to prepare for. The most memorable and beautiful moment occurred when I made it back to my seat because THAT is when the applause became thunderous and THAT was when the standing ovation occurred. It was not my music that was being celebrated; it was the fight that I put into accomplishing my music that was being celebrated. It was the effort, not the outcome. It is one of the most beautiful and defining moments of my life…
BUT the pain also served to reaffirm my previous decision; I knew that it was time to ‘for real’ retire my music.
It was only a few weeks later that I received THE phone call; the one telling me that the Deep Brain stimulation (DBS) surgery; which would help improve my motor symptoms for a time; was scheduled for two weeks from that day! Some of you know what a miracle this was for me; it’s something that I had to work very hard to prepare myself for so that I would be strong enough to handle such an intense surgery. As far as music goes, in the back of my mind I hoped with all of my heart that this surgery would allow me to sing, play the guitar and piano again; and with those things, just maybe, I would receive the inspiration; which had gone missing; to write music again. It was quite a tall order but I knew to not get my hopes too high.
It’s very interesting how this turned out…
DBS has many pros but it also has side effects unique to each individual. I was blessed to be given back some of the mobility in my hands making it so that I have the ability to play the guitar and piano; but there is a catch; I CAN play, but my hands don’t remember HOW to play. This means that what was once muscle memory, what came as naturally as breathing, has completely disappeared. Also, a common side effect of DBS is changes to the voice. Well; it did change; but not in the direction that I had hoped for.
I was left with two options; give up and wallow in self pity; or look at the situation in a totally different sort of way….I have chosen option two. Instead of being frustrated and angry, I’ve dug through the ashes and found some embers that are hot and glowing brightly…
How many people get the opportunity to learn how to do their favourite things more than once?!!! I mean, seriously, how cool is that??!!
I get the joy of learning how to sing again; learning how to play the guitar again and learning how to play the piano again. I made the choice to view this as an exciting adventure!! Each step I take on this journey, every bit of progress matters. Each time that I sing or play; even if it doesn’t sound the way I would like it to; my heart becomes warm and I am filled with joy. Yes, MUCH patience is necessary, but if there is one thing I’ve had to learn over the past 6 1/2 years, it’s patience. I love to learn and I get to do it all over again.
Henry Ford said “Anyone who stops learning is old, whether at twenty or eighty. Anyone who keeps learning stays young.” If that’s the case then I guess my brain is 25 again; and you know what? It feels great!
Remember to always Have Courage and To be Kind!
Much love ~ Meg