Music is a powerful vehicle to me. I find that it can transport me to a different place and time, to a different person and body. It can create an arc between the past and present, igniting muscle memory fibers long thought dead. A beautiful piece of music has the ability to lift your soul up to places that you didn't know existed, can rip open your heart in a beautiful way that you shed tears of joy and wonder and make you ache with such longing that you feel as though you've just lost your dearest friend in the world.
As a child I found that I could rarely hold myself still if I loved something about the way a piece of music that was playing sounded to me, no matter where I happened to be at. Whether I was on the ice, waiting in line at the bank with my mom, out to dinner with the family, grocery shopping, it didn't matter. If the music spoke to me at all, my little body couldn't keep still and I had to interpret it. I would glide and leap and spin and find myself in a world that was solely myself and that song that was playing. I wasn't doing it for attention, I wasn't do it for the naughty thrill of reeling off as many axels across the produce section as possible, nor was I doing it because I was trying to pass the time - I was doing it because to me, that was simply what my body was suppose to do. It was suppose to breathe, to walk and to of course, express the joy, the sadness, the countless emotions that music make you feel. I simply couldn't keep it in.
I always found my happiest niche in skating was with choreography and the artistic expression side. Yes, I loved to jump and spin - but my mind was programmed in such a way that literally every single song that I heard was automatically broken down in my brain to a "skatable" format. I would identify where the spins would best fit, where the jumps would naturally go and of course where the footwork piece would layout. It didn't matter what genre of music, my brain would break down every song and style to skate to it. It was a challenge to me, the more outlandish the piece to try to skate to the better I would mull it over in my brain. I liked non-traditional skating pieces best. I had very varying tastes in music to begin with. I come from a competitive music trivia family anyway (more on that another day) and parents with wildly different tastes in music, which led to my having a love for classical, Motown, Classic rock and everything in between.
In my competitive days of skating, I would throw on headphones and listen to music while visualizing my program and mentally preparing for my program. I hated talking to people and didn't like pep talks, I much preferred to let my music playlist do that for me. When I couldn't sleep at night, I had just the right music to listen to that would help me drift off. Needed to study for a big test? Just the right music to focus for that. A road trip? Excellent! I would spend lots of time culling my music to plan what all I might want to listen to along the way. Walking around my college campus, always with my baseball cap pulled low and my earbuds jammed in with the volume up while I dreamt up new skating programs to music that I listened to. The main thing here, my entire life I have adored music. I use music to lift me up, to soothe me, to be there in just about every occasion of my life. And in just about every instance of my listening to music I find myself choreographing a program in my brain, as that was always such a passion, a love of mine, an easy and happy outlet for me.
Here's where it gets difficult - and you knew that was coming now didn't you... I had to essentially stop listening to music for years. After the RSD set it, after I tried to ignore it, after I fought against it, after I tried to keep coaching, after I fought so hard and lost to keep my life going in the direction that I worked so very hard to achieve, I found that I couldn't stand to listen to music anymore. Music was just too much pain and only pain. Even the happy songs were now sad. I'd start to choreograph programs in my mind and I'd remember that I'd never again get to choreograph any programs and the pain would wash over me. I would try to fall asleep listening to music and inevitably I would have dreams that I was skating again. It would be so real. I would lace up my skates, step left foot first onto the ice and go through warm ups. Sometimes if I was lucky I would get to do a few spins and jumps but I would always wake up usually right as I was just getting onto the ice and starting to do my warmup laps, and I would feel so good and then it would hit me as I woke up. I would be so happy for a split second. I skated, everything was ok, maybe I'd go again today...no wait, that's not right. Oh yes, it was a dream. I can't skate. I can't even wear a sock on my right leg right now, so there's no getting a skate on there.
So for a long time I stopped. I avoided listening to music, I rode around in my car without anything on, I would put the tv on for company in the house instead of music, anything to avoid hearing music. Here's the thing. You can't avoid music. Music is everywhere. It's scored on every television show, they play it in the grocery store, restaurants, you name it, you'll hear some music there. I had to finally face that music wasn't going to go away. I had to make peace with it. So, baby steps. I started listening to things were completely counter to skating music - jam bands, bands I had never listened to in the past and I found myself enjoying the music again. I also found myself listening for the swell of the music for the spins, the jumps and footwork points...and that it didn't kill. It didn't hurt anymore than anything else that RSD has thrown at me. In a way I found that it gave me some control back. Where I had been running away from it all, I was facing this fear head on. I am in so much pain that I miss out on a lot, well, much of life. Sitting in my chair or lying in bed and closing my eyes and escaping back onto the ice while listening to music gave me my body back for a brief window of time. While listening to the music I escape my prison of pain and I'm free again, flying over the ice, wind whipping in my hair, cold snapping at my cheeks and the chill of the air almost feels real. To say that it doesn't hurt when I have skating dreams and I wake up and realize that I can't skate or take my children skating would be an outright lie, because it still guts me. I'm at the baby steps level with this. I am working at controlling how I feel with this and I do love escaping in a daydream, it's just the dreams at night that get to me still. That and the not being able to skate and be "normal". That said, I'm going to focus on what I can do to enjoy the life I have now rather than focus on mourning the life I no longer have.
I have a lot of people that are working to try to help fix me. I have an amazing team at the Cleveland Clinic, my local doctors, and of course my husband who are all trying to help fix me, make me feel whole again, bring me back from the brink, give me back a piece of the life I use to know. My husband is always so upset that he can't fix my pain when I'm so broken down by the shear weight of the pain, the flares, the wicked ups and downs and unpredictability of it all. I know that if he could he would absolutely fix me, fix this for me. But he can't. But here is the things that maybe I can start to turn the corner on. Maybe I can fix how I cope.
Yes, fix how I cope with RSD. I can't fix me. I don't believe that going gluten-free (did that) or some other diet will solve this, nor do I believe that I can simply wish or pray this away. It doesn't work that way. What I can do, is change the way that I cope with it. I thought that music would make me too sad and I avoided it for a very long time. And it was true for a long time. Then time passed and I was able to get some clarity and enjoy music again. Not just music but how I could remember how I felt moving to music in my mind to the music. I take vacations back to my former athletic body all of the time listening to music all of the time. It helps me to cope with the pain now. On nights and days when my pain levels are spiking, I put on music and envision myself whole and focus on the music. It's wonderful and I'm so thankful that I can still find the focus to use music to center myself.
I'm hoping that I can continue to build myself back into a better version of me. I'm never going to be the girl that I was before I got RSD, no matter how many times I wish that could happen. That said, I think I've spent enough time wishing I could go back and stop this from happening. Now I've got to figure out how to live the best life that I can with what I have. I have RSD, but that shouldn't mean that the joy is absent from my life too. It's time to start working on fixing me.
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
Fix You
Coldplay
As a child I found that I could rarely hold myself still if I loved something about the way a piece of music that was playing sounded to me, no matter where I happened to be at. Whether I was on the ice, waiting in line at the bank with my mom, out to dinner with the family, grocery shopping, it didn't matter. If the music spoke to me at all, my little body couldn't keep still and I had to interpret it. I would glide and leap and spin and find myself in a world that was solely myself and that song that was playing. I wasn't doing it for attention, I wasn't do it for the naughty thrill of reeling off as many axels across the produce section as possible, nor was I doing it because I was trying to pass the time - I was doing it because to me, that was simply what my body was suppose to do. It was suppose to breathe, to walk and to of course, express the joy, the sadness, the countless emotions that music make you feel. I simply couldn't keep it in.
I always found my happiest niche in skating was with choreography and the artistic expression side. Yes, I loved to jump and spin - but my mind was programmed in such a way that literally every single song that I heard was automatically broken down in my brain to a "skatable" format. I would identify where the spins would best fit, where the jumps would naturally go and of course where the footwork piece would layout. It didn't matter what genre of music, my brain would break down every song and style to skate to it. It was a challenge to me, the more outlandish the piece to try to skate to the better I would mull it over in my brain. I liked non-traditional skating pieces best. I had very varying tastes in music to begin with. I come from a competitive music trivia family anyway (more on that another day) and parents with wildly different tastes in music, which led to my having a love for classical, Motown, Classic rock and everything in between.
In my competitive days of skating, I would throw on headphones and listen to music while visualizing my program and mentally preparing for my program. I hated talking to people and didn't like pep talks, I much preferred to let my music playlist do that for me. When I couldn't sleep at night, I had just the right music to listen to that would help me drift off. Needed to study for a big test? Just the right music to focus for that. A road trip? Excellent! I would spend lots of time culling my music to plan what all I might want to listen to along the way. Walking around my college campus, always with my baseball cap pulled low and my earbuds jammed in with the volume up while I dreamt up new skating programs to music that I listened to. The main thing here, my entire life I have adored music. I use music to lift me up, to soothe me, to be there in just about every occasion of my life. And in just about every instance of my listening to music I find myself choreographing a program in my brain, as that was always such a passion, a love of mine, an easy and happy outlet for me.
Here's where it gets difficult - and you knew that was coming now didn't you... I had to essentially stop listening to music for years. After the RSD set it, after I tried to ignore it, after I fought against it, after I tried to keep coaching, after I fought so hard and lost to keep my life going in the direction that I worked so very hard to achieve, I found that I couldn't stand to listen to music anymore. Music was just too much pain and only pain. Even the happy songs were now sad. I'd start to choreograph programs in my mind and I'd remember that I'd never again get to choreograph any programs and the pain would wash over me. I would try to fall asleep listening to music and inevitably I would have dreams that I was skating again. It would be so real. I would lace up my skates, step left foot first onto the ice and go through warm ups. Sometimes if I was lucky I would get to do a few spins and jumps but I would always wake up usually right as I was just getting onto the ice and starting to do my warmup laps, and I would feel so good and then it would hit me as I woke up. I would be so happy for a split second. I skated, everything was ok, maybe I'd go again today...no wait, that's not right. Oh yes, it was a dream. I can't skate. I can't even wear a sock on my right leg right now, so there's no getting a skate on there.
So for a long time I stopped. I avoided listening to music, I rode around in my car without anything on, I would put the tv on for company in the house instead of music, anything to avoid hearing music. Here's the thing. You can't avoid music. Music is everywhere. It's scored on every television show, they play it in the grocery store, restaurants, you name it, you'll hear some music there. I had to finally face that music wasn't going to go away. I had to make peace with it. So, baby steps. I started listening to things were completely counter to skating music - jam bands, bands I had never listened to in the past and I found myself enjoying the music again. I also found myself listening for the swell of the music for the spins, the jumps and footwork points...and that it didn't kill. It didn't hurt anymore than anything else that RSD has thrown at me. In a way I found that it gave me some control back. Where I had been running away from it all, I was facing this fear head on. I am in so much pain that I miss out on a lot, well, much of life. Sitting in my chair or lying in bed and closing my eyes and escaping back onto the ice while listening to music gave me my body back for a brief window of time. While listening to the music I escape my prison of pain and I'm free again, flying over the ice, wind whipping in my hair, cold snapping at my cheeks and the chill of the air almost feels real. To say that it doesn't hurt when I have skating dreams and I wake up and realize that I can't skate or take my children skating would be an outright lie, because it still guts me. I'm at the baby steps level with this. I am working at controlling how I feel with this and I do love escaping in a daydream, it's just the dreams at night that get to me still. That and the not being able to skate and be "normal". That said, I'm going to focus on what I can do to enjoy the life I have now rather than focus on mourning the life I no longer have.
I have a lot of people that are working to try to help fix me. I have an amazing team at the Cleveland Clinic, my local doctors, and of course my husband who are all trying to help fix me, make me feel whole again, bring me back from the brink, give me back a piece of the life I use to know. My husband is always so upset that he can't fix my pain when I'm so broken down by the shear weight of the pain, the flares, the wicked ups and downs and unpredictability of it all. I know that if he could he would absolutely fix me, fix this for me. But he can't. But here is the things that maybe I can start to turn the corner on. Maybe I can fix how I cope.
Yes, fix how I cope with RSD. I can't fix me. I don't believe that going gluten-free (did that) or some other diet will solve this, nor do I believe that I can simply wish or pray this away. It doesn't work that way. What I can do, is change the way that I cope with it. I thought that music would make me too sad and I avoided it for a very long time. And it was true for a long time. Then time passed and I was able to get some clarity and enjoy music again. Not just music but how I could remember how I felt moving to music in my mind to the music. I take vacations back to my former athletic body all of the time listening to music all of the time. It helps me to cope with the pain now. On nights and days when my pain levels are spiking, I put on music and envision myself whole and focus on the music. It's wonderful and I'm so thankful that I can still find the focus to use music to center myself.
I'm hoping that I can continue to build myself back into a better version of me. I'm never going to be the girl that I was before I got RSD, no matter how many times I wish that could happen. That said, I think I've spent enough time wishing I could go back and stop this from happening. Now I've got to figure out how to live the best life that I can with what I have. I have RSD, but that shouldn't mean that the joy is absent from my life too. It's time to start working on fixing me.
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
Fix You
Coldplay
