Hurt

Hurt.  Such a simple word.  It gets asked often and thrown about.  Are you hurt?  Did your feelings get hurt?  Did that hurt you?  Sounds like that hurts.  Hurt.  Four little letters.  I remember as a child there were certain words that could get you into trouble and they were often known as four letter words - this one is no exception.

This entire mess, this entire RSD mess started with an accident in which I was hurt.  Most times when I was hurt, I could shake it off.  In the cases when I wasn't able to power through, I would rest for a day or so and then I could go back to my life as normal.  This time it was different.  It was much different.  I was hurt and in a very bad way.  After casts, surgical repairs and years of fixing the problem I was left feeling even more hurt than the initial injury.  It didn't make any sense to me.  The initial hurt never went away.  It never got better.  It only got worse.  It would get better for a little while, but it would come and go and at the strangest times, my leg would just simply go out from underneath me.  It baffled me, there was no denying that, but I kept trucking along with life and hoping that it would get better and at some point it would stop.

Fast forward to the discovery that it was RSD.  At last we knew what we were dealing with.  Now we could tackle this problem.  Now I could get some real relief.  And I did.  But for very short periods of time and then that hurt would come back and come back stronger.  I grew more and more frustrated as I tried to continue to live a real and productive life and the RSD ate away at me from the inside out.  Finally after exhausting temporary blocks to my back, I went ahead with the SCS (Spinal Cord Stimulator) as this was presented to me as being my only option that was left.  I was out of other means to treat my disease - medications were maxed out, I my spine couldn't have any more injections - I was out of options.  After much research and grilling of my doctors, I proceeded.  And I was left with more hurt.  I don't take my care lightly.  I go to one of the top treatment centers in the country, it just happens that this is the way it has worked out.

So, where does this leave me.  Well, I am in constant pain.  More than even my husband realizes.  I try to hide my pain from pretty much everyone in my life.  I can't stand to deal with his disappoint and let down when he knows how much I suffer, my mom becomes to upset to know she can't help or fix things from so far away and really there aren't too many people that are very close to me to realize anything other than the surface hi, hello.  I'm exhausted from pain - from hurting - and I don't what else I can do.  I feel like I just want to stop feeling all together because honestly it's too much.  I spend so much of my waking hours trying to keep from breaking down in front of my kids from pain and discomfort that once they are to bed it's all I can to figure out whether I should go cry in the shower or collapse into bed myself.  I want to fall into a deep dreamless sleep an I just can't.  I'm exhausted, but my knee screams, my ankle throbs and lights up and my back and battery pack get all kinds of unhappy as soon as I lay down and try to relax.  Each night I'm so tired and each night I struggle to relax and sleep.

I'm tired of hurting.  I'm tired of how much this SCS has added an extra layer of hurt on top of my RSD pain.  I'm exhausted stressing out about whether or not I should have the unit removed.  I feel as though it has to come out - but I'm intimidated by the idea of yet another surgery, the cost of it, the stress and strain on my body, the recovery time, the impact it will have across the board and trying to figure out what the right answer is.  It gives me a headache and anxiety just thinking about it.  Hopefully I choose the right decision for me and I can come out of whatever is next with less, not more pain.  I'm so tired of hurting.

Full of broken thoughts
I cannot repair
Beneath the stains of time
The feelings disappear
You are someone else
I am still right here

Hurt - Nine Inch Nails

That I would be good

Self worth is a tricky thing.  When you're a child you don't even think about it.  You simply roll along in your world and you happily dance along, proud of your accomplishments be they small or large.  I see that now as a parent myself as I'm cheering my children along and try to help build up their spirits and sense of pride and self-worth. You work so hard as a parent to a child to help create a sense of self worth to this little person who is just entering the world and learning who they are.  It's quite the process, especially when you are struggling to find and build self worth as an adult at the same time.

Now that I'm middle aged and find myself adrift - no longer a child earning top marks in school, no longer an athlete performing and receiving medals and trophies for my performances, no longer in the workforce receiving performance based bonuses - it has left a void in my self worth department.  A lot of a persons self worth is tied to their identity.  In this day and age - much of our identity is tied to your job.  What is your title and how fancy does it sound?  Back in the day I was never known by my first name, it was always with "the skater" attached, as though that was my christian name.  After the accident and my retirement from coaching, I become the Development Officer.  Ooooh, I know what you're thinking - fancy.  Eh, not really.  It was one of those things in life that fell under the category of being good at but having zero passion for.  Perhaps if I had been raising money for a cause I was passionate about that would have changed things, but my speciality was law schools....not really anything that rang my bell so to speak.  After that I went to the Stewardship department side of things when the travel was breaking down my body too quickly, but again, the office setting was too hard on my body and my bad days were out numbering my good ones and I could never predict when I would be ok to sit at a desk for any length of time.  So, at last, I had to throw in the towel.  At that point in time, I had no title left but "Mrs".

I'm very proud to be a Mrs.  I love my husband.  He is my best friend and we are closer than any other couple I know.  That said, I don't want the "Mrs" to be what define who I am.  I no longer had a job to help define who I was.  I was reluctant to let the RSD be what defined me.  I didn't want to let that monster be what defines me.  I felt as though if that was all that was left of me, then I had lost.   I tried to push the notion of what defines who I am at the core of me out of my mind, yet it kept rearing up in my thoughts.  I met with a new doctor and part of the new patient intake involved a "get to know you" worksheet (oh yay!).  As I went through the document, I became more and more downcast.  I had "n/a" to list as my work.  Under hobbies and interests I also wrote none, scratched that out and put down "my children", then proceeded to scratch that out again and begin to wish I could just be anywhere else in the world.  My children aren't a hobby.  The are my life.  They are my lifeline.  They are what tether me, what keeps me pushing the rock up the hill in the world.  They are what make me smile when all I want to do is lay down and sob.  They are what make me pull out a well loved book and try to find calm rather than pull out a bottle of wine and try to find escape from pain.

So you see, this brings me back to that self worth thing.  How do you define yourself when you're left with your life in tatters.  When you're left wondering who you are and question everything that is left for the most part.  My husband is pained by this subject quite frankly.  He loves me.  He adores me. I know he does.  The problem is - I don't love me.  I'm angry at me.  I'm still mourning the loss of me, the person I was, trying to work through quite frankly the rage that I feel at times that I'm left with so much pain in this body.  It's mind blowing to me that a body can feel this much pain.  There are times when the pain rockets so high, when my pain circuits misfire so badly and the air feels too heavy with sounds that hurt, when every fiber in my being wants to explode and my heart hammers like a race horse firing full out around the track and I think, "this is it.  This is the end of me".  And in that moment, I fully expect to have a stroke or heart attack or implode from the pain, because it feels as though there is no way that I can possibly bear it.  My code for this with  my pain doc is Barbaro...  So, how do I recreate self worth out of these ashes?  How do I find it within myself to love me again.  To forgive myself for not being able to heal.  To forgive myself for not being able to stay in remission after my pregnancies like I had hoped and prayed for.  To forgive myself for being a flawed individual with an invisible disease.

I think I keep looking to my children because they look at life at the most basic level and that's where I have to start to build back up from.  They don't know any of the person I was before, and they don't analyze who I am today.  They just know that they love me.  For simple reasons.  I'll take it.  I got extra hugs and kisses tonight, along with being told I was the best mommy ever.  I didn't do anything amazing, it was just because...  Maybe she knew I needed to hear that.  Who knows.  What I do know is that I'm going to try to remember to be kinder towards myself.

That I would be good even if I did nothing
That I would be good even if I got a thumbs down
That I would be good if I got and stayed sick
That I Would Be Good ~ Alanis Morissette

Dreams to Remember

This has been a bad year.  This has been the kind of year that makes you question your resolve, your faith, your place in the world....it's been that kind of year.  It's been hard.  It's been oh so hard.  I've been struggling and I don't think that's been a surprise to anyone that knows me or has been following along.  That said, there are still moments of joy, moments that spring up and surprise me and remind me that I am loved, that there is hope, that maybe, just maybe - in the grand scheme of things, it will be ok.  Maybe this whole shebang could have that happy ending after all.

My little girl has been asking, pleading to learn to figure skate.  Of course she has.  We have moved back to the town where it all began.  Being back in the town where it all started, she has been told what a wonderful skater her mommy was.  It's funny - she was told this by other people and after more than one person told her, she asked me later at home if I really was a figure skater.  I told her that a long time ago, yes mommy use to skate.  She looked hurt, wondered why I didn't tell her.  Oh the confusion we cause when we try to protect ourselves from the truth.  She really wanted to see Mommy skate,which I tried to explain that mommy could no longer do, but I would try to get her grandparents to send up some video for us to watch together.  After much digging around - some video was located (although most of the footage is lost it appears....that kills me, but that's how my year is going.).

My daughter was enthralled watching the footage.  Some of the video was just of simple practice sessions with my coach - yet she was so taken with it.  She grew more resolved - she wanted to learn to skate AND mommy was going to teach her.  UGH.  That was a bit of a knife to the heart.  I would love to teach her how to skate.  I loved coaching - it was my perfect career and I hated having to give it up.  I kept explaining that mommy couldn't skate anymore, but that she could still learn how to skate.  So, off she went, reeling off waltz jumps through our kitchen excitedly planning her skating lessons in her mind while I hemmed and hawed and never went through with signing her up.

I'm a selfish parent.  I couldn't do it.  I went on the website.  I looked at the coaching roster and the program....I hovered over the signup form and everytime I thought "it should be me taking her out there".  And every single time I exited the browser and pushed it out of my mind until she would bring it up again.  I was putting my ego, my pride, my hurt above my child's interest and wants.  I'm not proud.  I knew I needed to get over it.  I pretended that I didn't want her to do it because I was afraid she would love it, take a bad fall and get RSD too...but honestly, she could fall playing soccer or tennis or running to the mailbox.  It's just me having a block about not being able to skate with her.  So, I finally told my husband we could sign her up but he would have to be the one to take her.  I couldn't handle it - at least not at first.  I was sad, but I was going to have to get over it, over my ego.  I felt down as I went online to sign her up for lessons and dragging my feet, I logged into FaceBook first to kill a little more time before doing so.  That's when something went right in 2016!

As I navigated around FaceBook, I ended up chatting with my first ever figure skating coach.  I adored my first ever coach.  I mean ADORE!  I had a sleep over at her apartment as a kid and I remember feeling like such a rockstar for it.  I was in her wedding.  She was just the most amazing figure in my life growing up and I've kept in touch with her over the years since she left our college town.  Her daughter now attends college in our town and she is back to visit fairly often.  In an unusually bold move on my part- I asked if she still skated at all, and if she did - would she take my daughter out to work with her the next time she came up to visit.  I explained that I couldn't, and that it would mean so much to me if she could.  She wrote back that she would be happy to and she would be in touch the next time she came in town to visit.

That next time happened this weekend.  I cannot begin to explain how amazing it was to watch my daughter go hand-in-hand out onto the ice with my first coach.  To watch them work together...I'm tearing up now as I write this.  My coaches motions were so familiar even after all these years.  It's a language you don't forget - it came back quickly and I knew exactly what she was saying to my daughter even though they were clear across the arena.  I saw my daughters eyes light up and how incredibly proud she was as she worked to master skating all by herself, swizzles and backwards wiggles on her first session on the ice!  I thought at her young age that she'd last maybe 30-45 minutes at most.  We finally got her off the ice after an hour and 45 minutes!  We have plans for them to skate together again the next time my coach is in town and my daughter can barely contain her excitement or wait for that to happen.

It's been a hard year so far.  There is no denying that it has kicked my butt so far.  I am hopeful that we have good things on the horizon.  That said, in the depths of my sadness, I have those that have meant the most to me come back around into my life and bring with them unexpected sunshine.  For that I am blessed.  I don't have a ton of friends.  RSD has really weeded out my friends.  That said, it has shown me the ones that are really there for me.  The ones that are in it for the long haul.  The ones that really matter.  I've had a week where I've cried more than I have in a long time, felt more pain than I have in a while, had less sleep due to such bad pain and the SCS causing such crazy misfires and yet I've also had some of the most amazing moments of joy mixed in.  I've had old friends lift me up, remind that I'm loved, remind me that I've got a support system, that I'm not alone, and held up a mirror that has showed me a glimpse of that girl I use to be.

So, tonight I can drift off to sleep (or try to) and think about my blessings because I do have them.  I have my husband, my children, and I am lucky enough to have a few other people in my corner that are with me as I fight this battle.  I think I need to stop fearing this year and just be a little more free...or fearless.  Being stressed and terrified won't stop the bad things from happening, but it will stop me from enjoying any of the good things that are occurring.   If nothing else, I am aware that my children are growing up so quickly and I do not want to miss out on joyful moments with them because I'm fearing "chicken little" moments with the rest of the world.

Nobody knows what I feel inside
All I know, I walked away and cried
I've got dreams
Dreams to remember 
Dreams to Remember - Otis Redding

Superman

Sometimes I feel like I have to be Superwoman.  I get exhausted by trying to be the normal version of me.  My pain levels are crazy.  The bass of a song feels like someone is throwing a hard punch repeatedly into my body.  The slight bump from the little old lady with her shopping cart at the grocery store feels like a car wreck.  The wild and fierce hug from my little ones feel like razor blades and crushing love all at the same time.

That said, I hate showing my pain, my vulnerability, my weakness in public to strangers, to friends, to loved ones.  I carry with me the golden rule of skating - you fall in competition, you get right back up with that smile plastered to your face and you keep going as if nothing happened.  It didn't matter if the fall was a small bounce, a bone jarring knock or a bone breaking crash - the end result was the same.  You brush it off as if it never happened, it did NOT bother you at all and you smiled.  There is a video of me competing in Buffalo and I fell on my opening jump - I followed the golden rule and popped right back up, smiled and continued on with the rest of my program.  I skated a clean program the rest of the way, smiling, landing clean jumps and made sure to curtsy to both the judges and the audience at the end of the program.  I skated off the ice and the video follows me as I get my skate guards from my coach, who you can see if asking me a question.  The video ends with me nodding curtly with a smile still plastered on my face as I stride away in the direction of the lobby.  I remember that competition.  I placed second.  I also fractured my pinkie and sprained my wrist and heaven forbid I let anyone see me cry.

Maybe I would be better off if I could let people in a little more. I work hard to make sure that I don't limp, that I don't whine about my pain, that I don't go on and on about my disease...I come from quite the genealogical stock of stiff upper lip and not so fuzzy trait folks.  English, Russian, German and Cherokee....I'm more ready to not let on that my limb has fallen off than let on that something hurts.  I hate letting my daughter see me hurt too often.  It's inevitable that she'll know I'm in pain, that I hurt, that it's a bad day for mommy at times, but I don't want that to shade her days with too much gray.  I think that it's selfish of me to let it color her world too much if I can help it.

So, I do my best to prop myself up when I'm in public and I nod, I smile, I try to protect myself from the people around me and I try to talk to no one.  I avoid questions and when people ask how I am, I smile and usually make some banal comment on the weather or how I'm such a lucky mum- because that part is true.  I don't want to depress people and let them know that this little outing took all morning to get the courage and energy up for, and that it will have wiped me out.  That I have to be extremely careful how I do things because I find myself in tears easily due to pain these days and please for the love of all that's holy do not try to hug me.

That is why I feel like I have to be Superwoman.  I feel like I need the armour, the bulletproof shell to go out in public to deal with strangers and all of the potential dangers that are out there.  With my spinal cord stimulator and the scar tissue issues I have, I cannot easily move these days, especially reaching overhead.  This is just one of the problems that I have to deal with along with the RSD itself.

My daughter has a supergirl outfit that she wore for Halloween a few years ago.  She loves playing dress up and that one has been back in rotation along with her princess gowns as of late.  Maybe I should get one in my size so that I can proudly wear my SuperWoman status.  If nothing else it would help me keep that safety bubble around me when I'm out and about - people would think twice about getting too close to that middle age mom in the SuperWoman costume....ha!  Maybe I just solved part of my problem!  I always get so nervous about people being too close to me.  That could do it!

Maybe I need to stop trying to be quite so stoic.  Maybe I need to let on to others a bit more when I'm struggling, when I'm having a bad day, when I'm in pain.  I just have a hard time letting go.  I think it's the dam effect.  I have this wall built up, to protect me.  I'm afraid that if I start to let down my guard, if I start to share more, I feel a bit too much, and the dam will burst - and quite frankly I don't think I can survive all of those emotions.

I wish that I could cry
Fall upon my knees
Find a way to lie
Bout a home I'll never see

Superman (It's Not Easy)

Five for Fighting 

Fix You

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