I think most people look backwards in time with fondness. I look at photos and videos that have survived, along with the memories in my mind with such fondness. There was no way to know at the time just how wonderful of a time it was. I was young, whole and my body had not yet begun to break down and betray me. I could leap, twirl, glide and be in full control of every inch of my body all while gliding on 1/4" blades on a sheet of ice. It was more natural than walking. The smile on my face was easy. The words poured from my brain onto the paper and from my mouth with ease. I had no idea what pain brain was. I could start and finish any book in a single night. There was no need re-read sentences over and over again because once I reached the end I had forgotten the beginning. Just as I don't think you'll fully appreciate what you have while you have it, I don't think you can truly understand just how quickly or early the simple things in life can be stripped away from you.
The start of my life was almost too easy in some ways. Walking, twirling, leaping, skating, dancing, gymnastics; it all came so easily to me. The first time I got on the ice as a littlek girl, I never fell. I never faltered. It was like breathing. My body was meant to do it. I got off the ice a rosy-cheeked, excited child asking my mother "When are they going to let us skate on the real ice?". I had been so prepared by my parents that skating would be slippery, would be hard, to be prepared to fall, that I was certain that I had not been on the real thing yet. Beginner lessons were taught in a studio rink and in my childlike innocence, I assumed that it was fake ice. It was so simple. You glided and it was fun! It never occurred to me to be fearful of falling, of worrying about what could happen. I just knew that I loved it.
As months slipped by into years I grew from a young girl with a passion for skating to a young woman with talents and passions beyond the skating arena. It was true, I loved competing and coaching but there was more. I loved broadcast journalism, I loved sports of all kinds, travel, writing; there was more to me than simply a skater/skating coach dynamic. I continued coaching and planned to make that my career, but I grew my other passions. I loved playing tennis, golfing, long hikes with my dog, photography, live music, cooking, deciding if I wanted to pursue my passion of voice over work on the side. I had a lot to look forward to. It was the winter of 1998, an Olympic year no less! I loved Olympic years! Back in those days, international skating wasn't as easily accessible to watch and it was wonderful to consume so much wonderful skating as one would at an all-you-can-eat buffet in Vegas. Little did I know, I was rapidly approaching the end of my normal life. I was 19, going to college, juggling passions, making long-term goals, excited for my future that I felt was unfolding excitedly in front of my feet and then in an instant, it was all gone.
It was, what should have been a relatively simple off-ice accident. It shouldn't have been life altering. I was doing a triple jump off ice. I skidded out on the landing. I skidded and as I fell backward, my free foot was already swinging back. I fell onto my free foot, my toes crumpling underneath me. The next thing I knew, my metatarsals were fractured, tendons and ligaments torn, ankle bone fractured, massive damage. I spent months in a cast healing the bones. I would bide my time in a cast waiting for the bone damage to heal. The final step in my journey was a surgical repair of the tendon and ligament damage. Little did I know, that this was the beginning of the end. The final crash in the car wreck, the point where the car that had been teetering on the cliffs edge falls off, goes up in flames. Waking up from that surgery I was certain that something went horribly wrong, and it did. Something unlocked in my body. I woke up feeling as though someone had poured lighter fluid in my body, ripping the hospital sheet off my leg. Crying in pain as the feel of each and every foot step that fell on the floor felt as though it would vibrate through my very core and implode my body. My disease had awoken. The beast was out of its box. Nothing would ever be the same. Despite repeatedly asking for help, looking for answers and trying to find out why my body was betraying me, it would take 7 years and an out-of-state move to locate a doctor that was able to read my medial records, exam me and diagnosis me properly. Seven years passed, seven years that could have slowed down the monster, prevented just how deep the claws that sunk into got, help stop my body from learning how to attack itself so efficiently, seven years of doubting myself and letting the doctors that told it was all in my head and that the pain that was so debilitating to me really wasn’t that bad mess with my head and confidence. Seven years is a lot of ground to lose to a beast as strong as the one I’m facing. I realize now that I pretty much lost the fight when I stayed in my little town and let my orthopedic surgeon continually pat me on the head and tell that his work was excellent, that I was fine. I knew that I was not. I should have listened to my gut.
I have been absent from writing here over the past year because it has been such a struggle. My health has been a steady slide. Every time I take a step in the right direction, I seem to find a patch of black ice and slide backwards. Despite my best efforts, I’m losing the fight to keep my body going. I’m losing range of motion, I’m losing my balance, I can’t do many of the things that I could, I have days that I can’t leave my home because it isn’t safe. More health issues have cropped up. I’m struggling to seek out the joy in life. Looking for joy and grabbing it with both hands. My life is flying past me and I am not a participant it in, I am a chess piece, a pawn really. I feel like the doctors use me like a guinea pig without any thought that I’m a real person rather than a robot with wiring and battery packs and untested methods thrown at me. Medications galore, arteries that are struggling, a brain that is on fire. When I would start to write I would get either so depressed or so angry that I had to stop. I have so many drafts over the past year plus that I have been absent. Rather than feel better as I wrote, I felt compelled to get up, search out any glass in the house we had and to hurl it against the side of our home. I wanted to cause destruction. I did pick up something though. I picked up the threads up hope.
I picked up my camera. I picked up my phone. I embraced my children. I reached out to the few friends that I had and sought support, looked up old friends and tried to reestablish that I am in fact a person first and a patient second. I sought a mentor for taking photos. It is something I have always l over doing and decided to pursue, not to become professional but to make me happy. To capture the moments that make me happy. And to challenge myself to find beautiful ones when all I can see are clouds and storms. I snuggled more with my kids, played more board games, found more ways to engage my kids even on my sickest days. No, I wasn’t the mom I imagined I would be. I wasn’t the active mom that could skate with them and go running around and be super mom. But I am THEIR mom, and no mom can possibly be a better mom to them than ME. It was time to embrace that. To stop apologizing for who I am.
Did this all come together in an epiphany and I’m all better? Am I fixed? No! Absolutely not. I am still very much a work in progress. I have learned to say goodbye to the things and people that bring stress and heartache to my life if I can. Can I say goodbye to everything that brings me stress? No. I wish that I could. That’s not possible though. There is definitely a large amount of stress in mylife that I was carrying that I did not need to shoulder and drag around. When I stopped and gave myself permission to put myself and my family first I realized that if anyone got upset with me for doing that, they weren’t worth keeping around anyway. Situations that cause stress, goodbye.
If you are on Instagram or Facebook, then you are familiar with memes. Sometimes I like them, although they can be overused. That said, one of my favorite ones is “Breathe darling. This is just a chapter, this isn’t your entire story”. I love that. It does feel right now like this is what my life will be chalked up to. But how can 4 decades be distilled into this fraction of time. I look backwards and have a mixture of memories both good and bad. Yes, I’ve been battling CRSP/RSD for 20 now. That doesn’t have to be what goes on my tombstone. That doesn’t have to be what I’m leaving as my legacy. This doesn’t have to be all that is me. One of my favorite songs when I was little was Simon and Garfunkle’s “Bookends”. I loved both the melody and the lyrics were so powerful to me, and yes, I was a little kid in the late 80’s listening to Simon & Garfunkel. What can I say, when my friends liked New Kids on The Block I was listening to Led Zeplin, CCR & the Doors. I keep reminding myself of that song now. My life can be bookends in a way. I have very happy memories in childhood and as a young person just starting college when I had my accident. I also have happy times as a married woman and a mom of two. It’s just being overshadowed by the label of patient, illness, sickness, disability. That is the middle part right now. I would like to believe that I can bookend that, starting soon. Western medicine be damned. Eastern medicine and bio hacking could be the start to a new life for me. I’m done listening to the “experts”. I know my body best. I’m taking a leap. I’ll either land on the ledge below to get down to safety, or stay on the edge of the cliff and trampled down by modern medicine. I like my odds.
“Long ago it must be
I have a photograph
Preserve your memories
They’re all that’s left you”
Simon & Garfunkel ~ Bookends
The start of my life was almost too easy in some ways. Walking, twirling, leaping, skating, dancing, gymnastics; it all came so easily to me. The first time I got on the ice as a littlek girl, I never fell. I never faltered. It was like breathing. My body was meant to do it. I got off the ice a rosy-cheeked, excited child asking my mother "When are they going to let us skate on the real ice?". I had been so prepared by my parents that skating would be slippery, would be hard, to be prepared to fall, that I was certain that I had not been on the real thing yet. Beginner lessons were taught in a studio rink and in my childlike innocence, I assumed that it was fake ice. It was so simple. You glided and it was fun! It never occurred to me to be fearful of falling, of worrying about what could happen. I just knew that I loved it.
As months slipped by into years I grew from a young girl with a passion for skating to a young woman with talents and passions beyond the skating arena. It was true, I loved competing and coaching but there was more. I loved broadcast journalism, I loved sports of all kinds, travel, writing; there was more to me than simply a skater/skating coach dynamic. I continued coaching and planned to make that my career, but I grew my other passions. I loved playing tennis, golfing, long hikes with my dog, photography, live music, cooking, deciding if I wanted to pursue my passion of voice over work on the side. I had a lot to look forward to. It was the winter of 1998, an Olympic year no less! I loved Olympic years! Back in those days, international skating wasn't as easily accessible to watch and it was wonderful to consume so much wonderful skating as one would at an all-you-can-eat buffet in Vegas. Little did I know, I was rapidly approaching the end of my normal life. I was 19, going to college, juggling passions, making long-term goals, excited for my future that I felt was unfolding excitedly in front of my feet and then in an instant, it was all gone.
It was, what should have been a relatively simple off-ice accident. It shouldn't have been life altering. I was doing a triple jump off ice. I skidded out on the landing. I skidded and as I fell backward, my free foot was already swinging back. I fell onto my free foot, my toes crumpling underneath me. The next thing I knew, my metatarsals were fractured, tendons and ligaments torn, ankle bone fractured, massive damage. I spent months in a cast healing the bones. I would bide my time in a cast waiting for the bone damage to heal. The final step in my journey was a surgical repair of the tendon and ligament damage. Little did I know, that this was the beginning of the end. The final crash in the car wreck, the point where the car that had been teetering on the cliffs edge falls off, goes up in flames. Waking up from that surgery I was certain that something went horribly wrong, and it did. Something unlocked in my body. I woke up feeling as though someone had poured lighter fluid in my body, ripping the hospital sheet off my leg. Crying in pain as the feel of each and every foot step that fell on the floor felt as though it would vibrate through my very core and implode my body. My disease had awoken. The beast was out of its box. Nothing would ever be the same. Despite repeatedly asking for help, looking for answers and trying to find out why my body was betraying me, it would take 7 years and an out-of-state move to locate a doctor that was able to read my medial records, exam me and diagnosis me properly. Seven years passed, seven years that could have slowed down the monster, prevented just how deep the claws that sunk into got, help stop my body from learning how to attack itself so efficiently, seven years of doubting myself and letting the doctors that told it was all in my head and that the pain that was so debilitating to me really wasn’t that bad mess with my head and confidence. Seven years is a lot of ground to lose to a beast as strong as the one I’m facing. I realize now that I pretty much lost the fight when I stayed in my little town and let my orthopedic surgeon continually pat me on the head and tell that his work was excellent, that I was fine. I knew that I was not. I should have listened to my gut.
I have been absent from writing here over the past year because it has been such a struggle. My health has been a steady slide. Every time I take a step in the right direction, I seem to find a patch of black ice and slide backwards. Despite my best efforts, I’m losing the fight to keep my body going. I’m losing range of motion, I’m losing my balance, I can’t do many of the things that I could, I have days that I can’t leave my home because it isn’t safe. More health issues have cropped up. I’m struggling to seek out the joy in life. Looking for joy and grabbing it with both hands. My life is flying past me and I am not a participant it in, I am a chess piece, a pawn really. I feel like the doctors use me like a guinea pig without any thought that I’m a real person rather than a robot with wiring and battery packs and untested methods thrown at me. Medications galore, arteries that are struggling, a brain that is on fire. When I would start to write I would get either so depressed or so angry that I had to stop. I have so many drafts over the past year plus that I have been absent. Rather than feel better as I wrote, I felt compelled to get up, search out any glass in the house we had and to hurl it against the side of our home. I wanted to cause destruction. I did pick up something though. I picked up the threads up hope.
I picked up my camera. I picked up my phone. I embraced my children. I reached out to the few friends that I had and sought support, looked up old friends and tried to reestablish that I am in fact a person first and a patient second. I sought a mentor for taking photos. It is something I have always l over doing and decided to pursue, not to become professional but to make me happy. To capture the moments that make me happy. And to challenge myself to find beautiful ones when all I can see are clouds and storms. I snuggled more with my kids, played more board games, found more ways to engage my kids even on my sickest days. No, I wasn’t the mom I imagined I would be. I wasn’t the active mom that could skate with them and go running around and be super mom. But I am THEIR mom, and no mom can possibly be a better mom to them than ME. It was time to embrace that. To stop apologizing for who I am.
Did this all come together in an epiphany and I’m all better? Am I fixed? No! Absolutely not. I am still very much a work in progress. I have learned to say goodbye to the things and people that bring stress and heartache to my life if I can. Can I say goodbye to everything that brings me stress? No. I wish that I could. That’s not possible though. There is definitely a large amount of stress in mylife that I was carrying that I did not need to shoulder and drag around. When I stopped and gave myself permission to put myself and my family first I realized that if anyone got upset with me for doing that, they weren’t worth keeping around anyway. Situations that cause stress, goodbye.
If you are on Instagram or Facebook, then you are familiar with memes. Sometimes I like them, although they can be overused. That said, one of my favorite ones is “Breathe darling. This is just a chapter, this isn’t your entire story”. I love that. It does feel right now like this is what my life will be chalked up to. But how can 4 decades be distilled into this fraction of time. I look backwards and have a mixture of memories both good and bad. Yes, I’ve been battling CRSP/RSD for 20 now. That doesn’t have to be what goes on my tombstone. That doesn’t have to be what I’m leaving as my legacy. This doesn’t have to be all that is me. One of my favorite songs when I was little was Simon and Garfunkle’s “Bookends”. I loved both the melody and the lyrics were so powerful to me, and yes, I was a little kid in the late 80’s listening to Simon & Garfunkel. What can I say, when my friends liked New Kids on The Block I was listening to Led Zeplin, CCR & the Doors. I keep reminding myself of that song now. My life can be bookends in a way. I have very happy memories in childhood and as a young person just starting college when I had my accident. I also have happy times as a married woman and a mom of two. It’s just being overshadowed by the label of patient, illness, sickness, disability. That is the middle part right now. I would like to believe that I can bookend that, starting soon. Western medicine be damned. Eastern medicine and bio hacking could be the start to a new life for me. I’m done listening to the “experts”. I know my body best. I’m taking a leap. I’ll either land on the ledge below to get down to safety, or stay on the edge of the cliff and trampled down by modern medicine. I like my odds.
“Long ago it must be
I have a photograph
Preserve your memories
They’re all that’s left you”
Simon & Garfunkel ~ Bookends
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