CRPS Supporters: You and Me Against the World
By Shannon for the RSDSA blog.
Sometimes, it just takes one person to make a significant difference in the life of someone with CRPS/RSD. For Shannon, that person is her mother. See how Shannon’s mom has helped her on her CRPS/RSD journey and how music tied them together even more.
I remember growing up and hearing the song “You and Me Against the World” on the radio. At the time, I did not appreciate all that it stood for; however, I do now. This could be yet another theme interwoven in my 26.5-year journey dealing with RSD, as this is how it has been for my mom and me. She has been by my side helping me to fight the battle, yet mom is fighting her own battle: having to watch me fight to get through each and every day. She thinks I do not see the emotions on her face or hear her silent tears; I know and that hurts me too.
I am the youngest of three and the only one my mom did not “push” (as my sisters would call it) to take piano lessons. I was the one who would rather play barbies outside with my friends or read, as I honestly did not want to play the piano. My mom is an amazing pianist. She started taking lessons at a Conservatory, though part of that meant she had to memorize music and take juries which consisted of playing your instrument of choice in front of faculty and getting a grade. That meant mom had to memorize her pieces, which were classical in nature (now I should say her piano instructor was Russian and was very strict). So, who was the one who helped mom? Me. I had played flute so I could help her. I fell in love with the music, passion, and emotion. Mom and I would sit down in the evenings and she would practice, and when she nailed it – GO MOM! Mom would play a variety of pieces from the great composers which inspired me. Finally, at the age of 14, the PIANO BUG bit me. As my sister would say, I took to the piano as a duck to water. I loved the playing the piano as it is such an expressive instrument. I knew my career would be in music.
My senior year of high school I elected to attend the same Conservatory as my mom, majoring in music therapy with a concentration in piano. Guess who was my teacher? Yep, the same as my mother. Freshman year was rough- adjusting to all the newness of being away from home and studying for exams as well as practicing. Not only [did I have to practice] my instrument, but I also had to take keyboard classes as well as guitar for my music therapy courses. My group of friends and I lived in the practice rooms. The conservatory was an hour from home, which was a blessing given the events that were about to occur.
I made it through my first semester and did fairly well – and then came Spring semester. Tuesday, February 13, 1990, literally one week after my 19th birthday, I knew something was not right with my right hand. It hurt and it looked different. Naturally, I thought I had been practicing too much, since we were expected to be in the practice rooms a minimum of 8 hours a day. I figured I would go to the nurse later that day. Well, it also happened to be the day of my piano lesson and wouldn’t you know it my teacher thought I was faking the pain because I did not want to have my lesson (I was playing Mozart and loved the piece). I literally wanted to say to her: “Can’t you see my hand is swollen and hurts?” I went to the nurse and talked to her and she said it was probably carpal tunnel, but if [it did] not better let her know and we would see about going to the doctor. I called my parents and told them. I was crying; this pain was not the norm.
By the end of the week, my hand was just a part of me. I could not use it and it was so swollen and even a breeze hurt it, which I thought was odd. I saw an ortho [orthopedic] who was wonderful- very kind and caring. Her diagnosis was CTS and she put me in a splint. If [the wrist did not get] better, we could do a cortisone injection and possible surgery. Mom came to school that afternoon and picked me up so I could go home. The pain became more intense over the weekend and we called the nurse to tell her that something was going on. So, Monday I went back to the doctor and I had the cortisone injection – UGH! Did that sucker ever hurt! I also went for an EMG and was to return the next morning to see my doctor for the results. All of the medical personnel I met were shocked at how quickly this happened. My parents were like: “What the heck?!” I had no idea what was going on. All I knew was I was in severe pain and had no use of my right hand. I ended up having surgery on Thursday, February 22. The doctor told us it would be a fairly short and easy surgery. NOPE – not the case with me. There were things that just did not look right and the doctor was concerned. My parents took me home and I slept in their bed that night. Mom was my “nurse” and honestly I was so tanked on medication, I thought mom was an alien. She literally looked like a bug with eyes bulging out of her head.
Things progressed fairly quickly, as I had to have my other hand operated on too for carpal tunnel. Mom was the one to take me back and forth to the doctor. We would talk and laugh figured we had to do something to make this thing “fun.” One day, we were at the drive-thru at Wendy’s and mom was ordering taco salads, and for some reason she put the bag in the back seat. When it was time to eat mom said: “Shannon would you please hand me the bag?” I just started laughing, as here I was, both hands bandaged and I could not use them and she is asking me to hand her things. Well, in April of 1990, I was diagnosed with RSD. At that time, treatment was inpatient stay and [included] massive courses of steroids as well as antidepressants. You might as well have called me the “Witch from the Bad Place.” I was evil and nasty and said things that would never come out of my mouth! And I was angry?! My emotions were all over the place. I tried to go back and finish my semester with the help of my friends to catch me up. They also would be scribes for me, as I still could not write due to the pain. One night, I remember talking to mom, and I was so angry at her that I cursed her out told her I hated her and then I said: “I wish YOU had this and NOT ME!” I slammed the phone down and almost ripped it out of the wall. My roomie looked at me as though she had no idea who this person was, and honestly I did not either. Something was so wrong with me. I was in so much pain and could not think straight due to all the medication. What did I do, but scream at my mom? Honestly I regret that comment to this day.
Fast forward though through the journey as it is hard to write it all out, but I can say the one constant [person] who has been by my side is my mom. She has fought for me when others would turn the backs on me, she would encourage me when I was at the bottom of the barrel, she would stay up late at night when I could not sleep. We would watch old episodes of “I Love Lucy” and laugh. Our favorite episode is the Vitavitavegamin episode. Mom would spend the night at the hospital when I had surgery and was so scared. Mom also struggled silently, as she had no idea what was going on. She spent many nights crying herself to sleep.
Mom was the one who knew that to get back on normal ground, I had to find a way to use my music. She was an organist at the church and they were looking for a choir director. She volunteered me to help out, which I did and that led to me being their choir director for many years. I also became the choir director at my home church, which was cool as my father was the minister. It was neat, as here we are as family, but in the church we were seen as minister, choir director, and pianist! I pushed mom hard, as I expected a lot from her as well as from my choirs. But with mom, I did not have to tell her how I wanted this part of the anthem played or to speed up/slow down; mom knew. People would say to us: “You inhale and your mom exhales,” which is so true! Music was my source and strength.
My parents also encouraged me to return to college. I am so glad I did. I initially started out as a music education major, but switched to majoring in psychology with minors in music and education. Mom was the one who encouraged me to keep on fighting; she would stay up late again helping me study for exams. We would spend many doctor appointments studying for exams, as one of my professors would give the class the test though we had to dig thru the books to find the answers, but I did. We would study to and fro and while we were at the appointment. I remember one of my classes we had to analyze all of the third movements to Beethoven’s nine symphonies. This happened during one of my really bad times. Who was my cheerleader? Mom! She was telling me I could do it and I did, but oh the pain of that.
It has been a roller coaster of 26 years in dealing with this beast. So many emotions, but I have had the unconditional love and understanding of amazing and loving parents. They have both battled so many emotions and, honestly, it hurts me so much to see them go through their own hurt and pain. It is so true that this beast impacts all of those around you in your life. My parents have given time and time again, no questions asked. Their support, their love, and their caring just amazes me each and every day.
As I reflect on this journey, I recall the words an amazing woman (my mother who is my best friend) said early on in this journey. It has been “You and Me Against the world.” We have laughed, cried, screamed, and still talk about that horrific comment that I made to her many years ago. It makes me cringe to this day. My mom has been my rock, my source of strength, and I am truly blessed to know that on this journey it has been:
“You and me against the world,
Sometimes it feels like you and me against the world,
When all the others turn their backs and walk away
You can count on me to stay
You and me against the world,
Sometimes it feels like you and me against the world
And for all the times we’ve cried I always felt that
God was on our side”
Lyrics by Helen Reddy