A Journey with CRPS/RSD Through the Gift of Music

Guest blogger Shannon, with dog Finian, details how music has helped her through her battle with CRPS RSD. By Shannon L. for the RSDSA blog.

Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below.

“WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD). In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain.

I have been wondering how to even start this blog, as so much has happened over 26.5 years – all the doctor appointments, surgeries, blocks, changes in relationships (with both family and friends), career. As I was sitting at the doctor’s office one Friday, getting yet another treatment for RSD (the bazillionth one or so it seemed) my nurses were talking to me about how RSD became a part of my life. I began telling the story and one thing was a common and constant factor: MUSIC. You see, even from the very beginning, in the times of the clunky Walkman’s to portable CD players to iPods and now smart phones, my music went everywhere with me. My doctors knew from the get go that, no matter what, I was going to listen to music (even in the Operating Room).

I was a music therapy major in college, with my goal being to work with autistic children and help them with music. My second semester started and all seemed to be going well until February 13, 1990, one week to the day after my 19th birthday. As I was getting ready for my weekly piano lesson, I noticed my hand was not right – there was so much pain and I could not use it. I was thinking about how in the world I was going to get through my lesson, as well as the rest of my classes which consisted of keyboard, harmony, and guitar. Well, needless to say my instructors were at a total loss and the journey of endless trips to doctors began, as well as taking my music with me. I would listen to classical music with my favorite piece being Bach’s Toccata and Fugue in D Minor and Beethoven, who endured much hardship in his life and yet wrote beautiful music that can hit every emotion one can imagine.

I ended up having surgery for what was thought to be carpal tunnel on both hands. In April 1990, I was diagnosed with RSD. I am sitting there thinking what the heck is this? At that time, doctors did not know too much about this beast. All I was told was I would not finish college, nor would I be able to work. How can a doctor tell a 19-year-old kid this? I had plans! I wanted to play the piano and use my music to help others. What was I to do? I went through every stage of emotion you could imagine and I turned to music to help me cope. Another song that kept repeating on the radio was You and Me Against the World, and that is what my mom told me. She would stand by me and help me fight this. Yet, all I could think of is my life in music is over.

So I thought. My father is a minister and my mother was an organist. The church happened to be looking for a choir director and mom thought what better way to get me to use my music [background] than to direct. I started helping the choir and found directing to be so therapeutic and yet another way for me to escape the pain. There was one particular choral composer whose music helped me and seemed to reach the very depth of my soul. When I was at my lowest, I would listen to recordings of his anthems over and over again and pray for the strength to get through this. I could throw myself into music, planning anthems and rehearsals. I would forget how much pain I was and the severity of it. Many people seemed to question whether I was in pain because “I looked so good.” My point then was I am Shannon who happens to have RSD – not oh by the way I have RSD and my name is Shannon. I fought so hard to be known as me and not the pain, even though it was hard. I also directed the adult choir at my father’s church as well as a men’s chorus, which was wonderful. Yet again, I could escape for a little while and focus on their singing and teaching them just how I wanted the anthems to be sung as they were painting a picture with the words of the anthems. Once again, the music of this one composer helped me. My hope was to one day work with him in having a concert with my combined choirs. In November 2000, we did just that! He traveled from Ohio and rehearsed with my choirs on a Wednesday night and then we had a concert the following night. Talk about AWESOME! The choirs would do cantatas at Christmas time and one particular was called The Journey of Hope. We did this two different times and after the second time I just sobbed and cried, as no matter what, on this journey, we have to have HOPE!

Every surgery I went through, I had music with me and the doctors would be cracking up as I would be laying on the OR table singing in my own little world. I would ask the doctors how long surgery would be and plan my tunes accordingly so that I would end with There’s a Light at the End of the Tunnel from Starlight Express. I have always felt that there is a light at the end of the tunnel. For me, that light is knowing I have accomplished something during the day, no matter how large or how small.

I am also a huge fan of Broadway shows and am so fortunate to live close to the Baltimore and Washington area, which is rich in theatre. One particular show I saw, which I remember sitting there crying through, was “The Secret Garden.” The song Hold On got me through some very difficult times as it says: “It’s the storm, not you, that’s bound to blow away.” That is so true. The pain can be raging, but that does not define who I am; it is not going to defeat me. I have often said that my legs would cooperate long enough for me to get through my day at work then act up when I am home. I am bound and determined to have as normal of a life as possible.

I also saw the show “Kinky Boots” and I absolutely loved it. This show has such a tremendous message- do not judge a book by its cover. Much too often I hear: “How can you be in pain? You look so good,” or “You cannot hurt that badly, you are working,” as well as “Don’t I see you walk every day?” What people do not see is the struggle that happens behind the scenes – how difficult it is to get through the day, to try and live a normal life, though I honestly do not know what normal is any longer. My life has been on a huge roller coaster since 1990.

This journey has taught me so many things, some good and yet some not so good. Through it all it has been my parents and myself against the world, fighting tooth and nail, each and every step of the way. I have learned the hard way who my true friends are, as this is not easy for anyone, even our doctors. I am truly blessed and thankful to have the doctors I have now. They treat me as a person and know I want to continue to work and have a life. I am determined to just be who I want to be- a fighter determined to get through this.

One thing that helped me was accepting this as I learned it is not ME – it is a part of me, but RSD does not define me. I am Shannon who has RSD in both legs BUT I am determined to work and have a life. It may not be what I thought it would be 19 years ago, but that is okay. Another song that has helped me is the song “Grateful” by Rita Ora:

“I’m grateful for the storm ~ Made me appreciate the sun
I’m grateful for the wrong ones ~ Made me appreciate the right ones
I’m grateful for the pain ~ For everything that made me break
I’m thankful for all my scars ~ ‘Cause they only make my heart

You see, what my music has helped me see is that if we hold on long enough, and hold on tightly, there is a light at the end of the tunnel. We have to rise up and fight and be who we are, let others see that NO matter what, we are people first and not our RSD. In the end, I can say that I am grateful for the pain. Do I like it, NO, but it has taught me so many things and helped to shape me into the person I am today. Through this journey I have met some amazing people, many of whom inspire me each and every day. I have the most amazing parents and so blessed to have friends who understand and care as well as to have doctors who get it and an employer who understands. I’m grateful for the pain and everything that made me brave, I’m thankful for the storm… I’m grateful.

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