WHO DO YOU THINK YOU ARE? That Imagine Dragons song gets me every single time. The bass line - oh that bass line. I hate bass. Don’t get me wrong. Once upon a time as a skater, there was nothing better than early morning ice, a strong base line and the feeling of your blade ripping into the ice. I have nothing against a good bass. It’s that bastard. You know who I’m talking about. That bully. That asshole. RSD. He got such a bad rap that he tried to switch alias’s and go by CRPS but really - he’s the same asshole he’s always been. He holds your body hostage. He’s a terrorist. He’s the boogeyman that comes in the night. He creeps in through the window that you thought was locked and steals away everything that was normal in your life. Throws a grenade into what was your every day pattern. Takes away piece of normalcy and replaces it with chaos, moments of hope that normal could return and then yanks them back away as he shoves you back into your prison.
I used to love nothing better than to go listen to live music. Music is life to me. As a professional figure skater I adored and sought out all different genre’s of music constantly. I ate up music as if they were edible courses - classical, jazz, broadway, blue grass, classic rock - you name it, I knew it and loved it. Music was oxygen to me. I constantly wished that my life could have a soundtrack to it much like that in a movie. When I was feeling happy - I knew exactly what song should be playing because it was usually blaring in my earbuds. The same went when I was sad, tired, full of angst. You name the emotion and I can name the song that accompanies it.
Once upon a time I was a total young gun. I was young to have such a big position at the rink I was at. I replaced an Olympic level coach as the director of skating. It was such an honor and one I didn’t take lightly. I loved what I did and who I worked with. I loved my life, my students and I battled my disease even though I didn’t understand what I was battling. I had horrible physical issues that I couldn’t understand, nor could my GP. I was baffled and hurt. I was going into a tail spin and I couldn’t figure out what was happening to me. Worse yet, I didn’t understand yet the complex interplay between stress and my disease. While I was trying to play lion tamer my beloved Grandmother died unexpectedly, We shared a birthday. Well, it was a few days apart - but we made it into a girls weekend trip yearly and lord did we have fun!!! New York City, Atlantic City - you never knew what we would get up to! She was always up for adventure and I strive to always have her free spirit and remain as fearless as she was. I miss her every single day since she passed. I digress. I lost her that last year I directing skating and my health spiraled. I remember the pain starting to over take my body and not knowing why I hurt so badly. I walked my sweet dog Molly - she was always my protector. I made it back and I put on music that I thought would make me feel strong. The next thing I knew I was blacking out from pain in the kitchen trying to make it to the bathroom. I grabbed my phone and dialed for help. I called my parents. I was a grown woman and I called my parents. They were 3.5 hours away and that was the last bit of consciousness I had for a few days. In my pain I managed to snap a tooth gritting my jaw in pain; I was lost in the vapors.
Our disease feels like a storm. There is the feeling of lighting. I feel like I’m being electrocuted half the time. I have zingers, zaps, if I’m using my SCS I get jolts and man don’t get me started about how extra jolted I get when I accidentally put my cell phone in my back pocket on the same side as my battery - yikes! There is also a thunder with our disease. There is a rumble, a visceral feeling in your gut. It rips across your soul. You feel this rip and shake across your very being, this rock and rip in your very core before the blue corpse skin spreads, before the cherry red blistered clown toes explode, before your heart jack hammers and pounds like a filly racing for that finish line at the Belmont. I don’t know what to do with all of these feels as they call them. Some days as my toddler wants to play with me on the floor with blocks and the vein in my forehead is doing its lovely dance and sticking out on the right side....that I could do without. What to do? I tell you. Embrace thet thunder. Fuck it and say, I couldn’t figure out what to do - so you’re going to feel the thunder.
Are you wondering what the hell I mean. I mean - go ahead and embrace that thunder. Sometimes the only way to deal with a storm is to run headlong into. I’ve tried ducking it, tried to figure out a way to go around. I’ve been trying to find shelter for 20 years come this fall. Well, aside from my remission with my pregnancies, I’ve found nothing to releave my pain. Sometime with the thunder is so loud, the storm of this disease is so strong, there is nothing to do but to meet the storm and try to figure out how to dance in the rain. I jam in my earbuds, jack up music that reminds me of when I felt strong and invincible and try to draw from that memory. As a skater there was always so much talk of muscle memory. Well, here’s to the muscle memory of strength, and feeling more than a spoonie, feeling more than the broken winged bird that I do. I’ll create my own thunder thank you, since my body likes to make so much lightning for me.
Thanks for hanging in with this rambling stormy post. I had surgery at the end of last year and suffice to say, it hasn’t gone well in the healing department. Pain brain is always fun. That said, putting out a perfectly written piece versus writing and getting this out of my head and putting something out into the universe. Just like this disease, things aren’t perfect. I’m not perfect. This is where I’m at. I’m in the middle of a raging storm. I’m trying hard not to get swept away. I’m hoping I’m strong enough.
“I was dreaming of bigger things
And wanna leave my own life behind
Not a yes sir, not a follower....
I was lighting before the thunder”
Thunder - Imagine Dragons
I used to love nothing better than to go listen to live music. Music is life to me. As a professional figure skater I adored and sought out all different genre’s of music constantly. I ate up music as if they were edible courses - classical, jazz, broadway, blue grass, classic rock - you name it, I knew it and loved it. Music was oxygen to me. I constantly wished that my life could have a soundtrack to it much like that in a movie. When I was feeling happy - I knew exactly what song should be playing because it was usually blaring in my earbuds. The same went when I was sad, tired, full of angst. You name the emotion and I can name the song that accompanies it.
Once upon a time I was a total young gun. I was young to have such a big position at the rink I was at. I replaced an Olympic level coach as the director of skating. It was such an honor and one I didn’t take lightly. I loved what I did and who I worked with. I loved my life, my students and I battled my disease even though I didn’t understand what I was battling. I had horrible physical issues that I couldn’t understand, nor could my GP. I was baffled and hurt. I was going into a tail spin and I couldn’t figure out what was happening to me. Worse yet, I didn’t understand yet the complex interplay between stress and my disease. While I was trying to play lion tamer my beloved Grandmother died unexpectedly, We shared a birthday. Well, it was a few days apart - but we made it into a girls weekend trip yearly and lord did we have fun!!! New York City, Atlantic City - you never knew what we would get up to! She was always up for adventure and I strive to always have her free spirit and remain as fearless as she was. I miss her every single day since she passed. I digress. I lost her that last year I directing skating and my health spiraled. I remember the pain starting to over take my body and not knowing why I hurt so badly. I walked my sweet dog Molly - she was always my protector. I made it back and I put on music that I thought would make me feel strong. The next thing I knew I was blacking out from pain in the kitchen trying to make it to the bathroom. I grabbed my phone and dialed for help. I called my parents. I was a grown woman and I called my parents. They were 3.5 hours away and that was the last bit of consciousness I had for a few days. In my pain I managed to snap a tooth gritting my jaw in pain; I was lost in the vapors.
Our disease feels like a storm. There is the feeling of lighting. I feel like I’m being electrocuted half the time. I have zingers, zaps, if I’m using my SCS I get jolts and man don’t get me started about how extra jolted I get when I accidentally put my cell phone in my back pocket on the same side as my battery - yikes! There is also a thunder with our disease. There is a rumble, a visceral feeling in your gut. It rips across your soul. You feel this rip and shake across your very being, this rock and rip in your very core before the blue corpse skin spreads, before the cherry red blistered clown toes explode, before your heart jack hammers and pounds like a filly racing for that finish line at the Belmont. I don’t know what to do with all of these feels as they call them. Some days as my toddler wants to play with me on the floor with blocks and the vein in my forehead is doing its lovely dance and sticking out on the right side....that I could do without. What to do? I tell you. Embrace thet thunder. Fuck it and say, I couldn’t figure out what to do - so you’re going to feel the thunder.
Are you wondering what the hell I mean. I mean - go ahead and embrace that thunder. Sometimes the only way to deal with a storm is to run headlong into. I’ve tried ducking it, tried to figure out a way to go around. I’ve been trying to find shelter for 20 years come this fall. Well, aside from my remission with my pregnancies, I’ve found nothing to releave my pain. Sometime with the thunder is so loud, the storm of this disease is so strong, there is nothing to do but to meet the storm and try to figure out how to dance in the rain. I jam in my earbuds, jack up music that reminds me of when I felt strong and invincible and try to draw from that memory. As a skater there was always so much talk of muscle memory. Well, here’s to the muscle memory of strength, and feeling more than a spoonie, feeling more than the broken winged bird that I do. I’ll create my own thunder thank you, since my body likes to make so much lightning for me.
Thanks for hanging in with this rambling stormy post. I had surgery at the end of last year and suffice to say, it hasn’t gone well in the healing department. Pain brain is always fun. That said, putting out a perfectly written piece versus writing and getting this out of my head and putting something out into the universe. Just like this disease, things aren’t perfect. I’m not perfect. This is where I’m at. I’m in the middle of a raging storm. I’m trying hard not to get swept away. I’m hoping I’m strong enough.
“I was dreaming of bigger things
And wanna leave my own life behind
Not a yes sir, not a follower....
I was lighting before the thunder”
Thunder - Imagine Dragons
