Headstrong and for the longhaul

Stubborn.  Bullheaded.  Headstrong.  Strong-willed.  My mother has told me that I always displayed these traits.  That although I was a very sweet and loving child, I was also a very determined child, one that drove her to have so many books with the previously mentioned words in their title.  She said that I was fearless.  I would often take delight in darting away from her - usually at the most inopportune times, such as a fitting room.  I would also make up my mind one way or another and stick to my guns.  Even at the earliest age.  One summer we took a camping trip to the Smokey Mountains, I was 3 years old.  I happened to decide on this trip that I dislike dirt.  In fact, I despised dirt and would NOT set foot in the dirt.  This was all decided and announced as we pulled into our camp site.  As my parents unloaded our things and got set up, I pulled myself up into the opened trunk with a few of my toys, settled in and promptly refused to get out.  And that is where I remained for the rest of the long weekend.  I ate my meals there, played with my dolls there, looked at my books there.  And heaven forbid anyone that tried to move me.  My parents quickly decided that for the sake of the ears of the other campers to simply let me do my thing....in the trunk.

 

I'm now so thankful to that little girl that was so stubborn that she spent the 4-days in the trunk of the car entertaining herself.  I am so happy that I have always been bull-headed, stubborn - all of those things.  Without those traits, I don't believe I would have made it to this day.  And no, there is nothing special about this day, other than I'm still here, trying to do my best, searching for answers, fighting for the best care I can get, arguing in endless circles with my insurance company, fighting the corporate fight against the haters and just in general- still fighting the fight.  Because simply, RSD wears you down, breaks you down, chops you up and chips away at you.  You might not realize it at first - but as I enter February - I have been dealing with this stupid RSD..also called CRPS, for 12, yes TWELVE YEARS!!  That is a really long time to be in unyielding, unending, ever-growing pain.  

I'm glad I such a stubborn little kid.  It prepared me well for the journey ahead.  I just hope that at some point, there will not be a need to be a fighter, that I can put aside this armor and rest.  Because this has made me quite weary.

Photographs & Memories

They say a picture's worth a thousand words. And I love photos.  I am forever taking photos - always have.  I would beg my Dad to take my photo, loved looking at our family slides - I was the one that would take the photos on all of the skating trips, camping trips- every moment.  I liked documenting the most mundane - and the most exciting.  In looking through photos - I always loved the candid photos as much as the formal - the everyday, casual and "not special" ones.

A photo can capture a lot, can say so much.  There is a photo of my grandmother that I love - I can't tell you who took the photo, or why a camera was there.  I just know that her eyes were lit up as she was laughing, there was a board game involved, she was dressed in every day clothes.  There was nothing too special - other than the person that it captured.  She was laughing, she was happy - her eyes lit up and you could see the sparkle.  It captured her fun, her warmth - it was my Gram.  It was the snapshot of her that was a quick portrait of her - of what she meant to me, of who she was.  And there was nothing about that day I'm sure, that would have led any of us to know that the quick photo snapped - well before digital - would be so wonderful.  Would be so essentially her...

That's the thing with candid photos.  You never know when a photo snapped will be your favorite of someone smiling..will haunt you for some reason.  You can never tell when a quick photo will follow you around and mean so much more.  It may be end up being a photo that is so-so and sits in the no-where drive on your computer, or it might end up being a photo that you can't shake, can't get out of our mind.  It could be meaningful and be a moment caught in time.  You might now know it for some time, but that photo could follow you, haunt you.

 

This is my haunting photo.  My parents came to visit...they stayed through the weekend and I tried as much as I could -but I wasn't able to reschedule my one lesson.  She was sweet - just a beginner and eager to learn.  My parents were happy to stop by the rink, wait while I taught my 30 minute private lesson and then we'd go out to eat...  They were excited to go to a rink again, to "watch me in action".  While there - they snapped this photo...me working on basic skills...just teaching -working one-on-one with one of my students.  What is so.....sad, happy, wistful, powerful...and well, everything - is that this is my last lesson.  The last one I ever taught.  I had no idea at the time that this would be my last student.  I didn't know that this would be such a momentous occasion.  I was close to many of my students...I can't tell you this students name...I can picture her parents faces - both always came to watch the lesson, I can remember her excitement, I can remember many things...but I can't remember her name.  I can remember the steps to my very first ever skating program...but this- my last lesson on the ice, the last time - I can't remember the details....I stare and I stare, but I never come up with anything.  Sometimes I think I know...but I realize that its just me reaching, just me hoping...I don't know.  I don't remember.  I had no idea that this would be important, that this would be a big picture day.  That it would be "prom picture" big, graduation picture...but not in a happy way.  Not the joyous, happy, excited photo...it's like the photo you find after your friend disappeared.  I wish I could find that girl, find that happiness again.  I was still able to skate- not in the same capacity...no jumps really, but still able to feel the ice under my feet.  I was noticing problems, but I thought that with the diagnosis of RSD, I'd be able to find treatments that would control the disease, take away the pain...at least minimize it.  I didn't know that I was only beginning the climb.  I thought I was nearing the top of my climb only to find that I was at the base of Mt. Everest.  And to make the climb..it's been a long, lonely and frightening assent.  People can't understand the pain, the disease, the feelings and uncertainty that goes with it. 

I look at that photo and I miss that girl.  I miss that life.  I see pieces of her still...the same face, the same hair..but that is about it.  I recognize her, but she's not around anymore.  She's missing.  She's floating off in space somewhere.  I miss her.

Until I can find her...I'll have to keep looking.  Maybe I'll put up some missing posters....

That's MY song!!

I tried something that I've been told I should do....I tried to watch some of the National Championships for figure skating.  I have avoided watching, hearing, listening or being anywhere NEAR the skating world since MY world got blown apart.  I was ripped out of the world of skating.  It was as though a locomotive plowed into me and I was somehow suppose to enjoy the world of model trains or something.  It is a kick in the gut to watch skating.  I want so badly to coach again, to feel the rip of my blade cutting into a fresh patch of ice - support myself through a job I love and believe in....but I can't.  I can't put a skating boot on my foot, I can't get on the ice, I can no longer skate.  It's just a fact - and it's one that I am well - not ok with.  I don't think I'll ever really accept it.

I couldn't understand what happened to me - for so long there were no answers...and then when there were answers -it was still so hard to explain, that it was just easier to remove myself from the equation.  To remove myself from the world - as if I never was there.  Exit- run for the door and slam it shut.  I miss my students, miss my friends from the skating world - I can't believe that anyone could believe that I don't feel as though I'm missing an appendage.

Today was a rough BAD day.  I had buzzing and shattering feeling all through my feet and hands.  I thought that some breakfast would make me feel better- but the feeling just spread and intensified - and then led to hives all across my abs and back.  So, I laid on our bed, legs propped up, in the softest clothes I could find and stumbled across the US Figure Skating Championship recap...and figured I was already in pain - let's try to watch it.  And of course, it was weird.  I didn't recognize many of the names - the clubs yes- but the names, not so much.  And then it happened - this girl out of Colorado got to the slow piece of her long program...and it was MY SLOW PIECE!!  My Pappy and I shared a love of music.  We would sit and talk music for hours and one piece that I incorporated into many programs- that was a favorite of his - that he would whistle around the house - was Rachmaninoff's Variations on a Theme of Paganini.  I heard that and it was like getting an extra kick in the gut.  It was my song, my favorite piece...really??  Of all of the songs you just had to have that one?

I was proud of myself.  I lasted through 30 minutes of skating -but once that came on - I couldn't take anymore.  It was just too much.  It was like watching your dog run to a new master.  Silly maybe...but I am connected to that piece of music...and I no longer have anything connected to it...my Pappy is gone, my skating is gone - and my health appears to be missing as well....So, the song appropriation by the little teeny bopper was the end of my skating viewing for the day.

I watched, I survived.  I found that it was nice to see that I could stand to watch some of the skating - the ice dancing - EASY! Mens - super duper!  Pairs - okey dokey.  Ladies-...well, ladies- I think it's going to be a bit more time before I can deal with watching you....

And now excuse me, I need to go listen to my i-pod, think happy pink thoughts as they overpower these painful black ones, and remember when....

Strange happenings on a moving sidewalk

Life is strange.  Really strange.  Lately, I have found the strange in life to be disappointing, heartbreaking, sad, depressing... anything but happy.  I have always been a believer in fate, karma, things that are meant to be.  I have always loved it when something just falls into place, when the stars align...I've been that kind of dreamy, sappy girl.  I blame it on the books and the old school Hollywood movies I watched with my Ole Gram.  After all, somehow Grace Kelly and Audrey Hepburn always seemed to have a happy ending, a twist of fate that ended just right.

I was flying home from the Cleveland Clinic - a long lonely trip that was proving to be difficult to the end.  I made it onto an earlier flight in Cleveland- they were worried that they may have to shut down due to a snowstorm.  When I arrived in Detroit, the weather didn't look much better.  Due to the spinal block- I was not moving at my fastest...well, I was proud to be moving at all under my own steam (thank goodness I'm stubborn!).  Unfortunately, as the pain meds were wearing off, waves of nauseous were hitting me like waves battering a shore line.  The pain in my spine from the injections, the pain from forcing myself to move and drag and carry luggage- when I should be resting and laying down and icing...was starting to take it's toll.  As I look at the brightly lit board in front of me, I weighed my options.  I missed the earlier flight out to FL, was near my gate but the ONLY thing that sounded good to my delicate tummy was a Charlie's sandwich.  That, of course, was at the other end of the concourse.  I sighed, tugged my tote bag onto my carry-on and slowly shuffled my way to the moving walkway. 

Normally, I am one of those people that speeds down the moving walkway.  I like to move- make way people!  I hate to feel like a poke...even when I feel stumbly and tired- I like to push myself- to feel normal.  Today was not my day.  I looked down, focused (yes, I squinted) and gingerly stepped onto the moving sidewalk..and proceeded to not move a muscle.  Until I had to switch to the next moving sidewalk.  It was perhaps the slowest I have ever gone the length of a terminal.  I made my way down there, placed my order and inhaled the spicy, yummy scent - and said a quick prayer that it would stay down!

I debated what was best.  Normally, I would take my sandwich, head to my gate and settle in.  This would not be a good time to try.  I had my hands full.  I couldn't juggle one more item - I couldn't try to carry one more item. So, I sat down, pulled out my book and dug in, head down.  After licking the last of the hot sauce from my finger tips, I sighed, counted out my evening pills, washed those down, again hoping they would stay down - and tried to get up the energy to make my way back to my gate.  Paul told me to get help, find a cart to take me to the gates...but...I'm stubborn.  And I let pride get in my way.  Which is stupid.  I admit it.

As I stood on the walkway, moving slowly back to my gate- I watched the people on the opposite track move past me.  Some moved at brisk paces, eager to get to their gates.  Others gathered children and the various items associated with traveling with kids (which apparently is a 1:10 ratio).  Then, then I saw what seemed to be a familiar-ish face.  One from the past...one I haven't seen in -oh, 15 years.  I squinted, wondered if it was the drugs kicking in...wondered if i was just hallucinating out of sheer pain...and then I heard myself shouting out his name "Hey! Kevin! Kevin XXXX!" Oh lord!  I immediately had the thought process scream through my head that 1) what are the odds 2) I haven't seen in him 15 years, what if it IS him and he doesn't recognize me and 3) holy moly I'm loud!!  But in that amount of time- he smiled, yelled back "S--?!" and told me to wait at the end - he'd come back around.

I immediately felt as though I was in a movie.  REALLY?  Did I really just see someone that I haven't talked to, let alone laid eyes on in 15 years?  I smiled, stepped aside and waited at the end of the walkway for him to double back.  Holy cow- it was Kevin!  We joked- where do you start?  How do you start- it's been 15 year!!  We both came out with we're married - he immediately had to know what my new name was!  We checked the boards- both of our flights were delayed - so we sat down at the gate and started talking.  First off - his family.  How were they?  How was his Dad?  How were his brothers?  I kept rattling off questions..but was stopped in my tracks.  His youngest brother, Andrew, passed away five years ago after a 4-year fight against leukemia.  That knocked me -took the breath out of me.  Andrew was a sweetie.  He had downs syndrome but never ever let that stop him- and that never let Kevin stop fighting for him too!  Kevin took care of Andrew -was his best buddy.  My last memory was our skating competition up in Buffalo - going bowling together- my first time bowling - and Andrew couldn't believe I had never bowled.  He was sweet - and funny - and a real doll.  We went to relax before my event - and we did just that - lot's of laughing, lot's of smiles.  And I hope that where ever he is he's happy and smiling and out of pain.

We caught up on happier subjects, continued on with mutual friends and how they are doing...and how very random it was to run into each other.  I almost didn't make it into Detroit because of the snowstorm.  Kevin almost didn't make it into the airport b/c of said storm as he was driving to the airport and his commute was double to get there.  However, both of us arrived, both of us just happened to be on that moving sidewalk, both looking up, both just there.

It was nice to be slapped in the face by fate, and to not have it hurt.  To have it be something that made me smile.  Yes, there were times that I had tears in my eyes - and it's always hard to discover that someone -that up until that moment, had been alive in your life, in your mind - has passed away.

It was a wonderful visit.  A wonderful time spent at the gate reminiscing and laughing.  As I fiddled and held my iPod in my hands, shifted uncomfortably in my seat as we taxied down the last open runway,  I couldn't help but smile, laugh and think about how amazing it all was.  How so many little things had to line up to coincide our meeting...  And that made me smile and hope that maybe, all of these things that I'm experiencing now - hopefully I'll look back and they'll just be little things.  And they'll have just been lining up to take me to a wonderful place.

In the meantime, I'm going to try to remember to look around as I navigate life...even on the days I'm immobile, forced to hold back and let others pass me by...because you never know who else is coming along.  Who you might meet.  Who you might catch a glimpse of when you aren't in such a hurry.

Stained Glass, Snow & Hopeful Heart...

I finally made my journey to the main campus of the Cleveland Clinic in Cleveland Ohio.  It was a whirlwind 3-day trip to trip to finally see Dr. Stanton-Hicks.  After reading about his work, hearing about his fabulous doctor-patient style, I was finally going to meet the man in person.  I was nervous as to what the meeting would bring...I was trying very hard to not get my hopes up that there would be some magical answer, a wonderful fix to this horrible problem.  There was a lot of anticipation and build up to the actual appointments.

The night that I arrived, I was greeted by a fresh blanket of snow in Cleveland with more softly falling.  First the first time in I can't remember how long, I looked out at the glittering snow drifting towards the ground and thought how beautiful it looked.  I checked in at the guesthouse and pleasantly surprised by the room when I opened the door.  I had my own little mini-kitchen, a nice bathroom, 2 queen beds, a desk area, little kitchen table ...basically it was a little apartment.  I opened the drapes to look out- as I was on the top floor and the site the greeted me was perfect.  I was keyed up - nervous, lonely, unsure and feeling a bit out of place with my feelings....and right across from me - a beautiful old church - softly lit so the stained glass glowed in the night..making the snow falling down even more poetic, and a fountain.  It was very calming.  I sat at the window and just looked out for the longest time.  I let the thoughts that were racing through my mind tick through until they slowed down to a rate that would let me sleep.

Throughout my visit, I found a lot of peace looking out that window to see the stained glass.  I spent a lot of time letting the snow fall on my fingertips, feeling the cold on my cheeks...which is so different from the cold down South!  I just tried to absorb the moments of peacefulness....  The people that were there were wonderful, absolutely wonderful.  Those employed by the Cleveland Clinic were fabulous and those people that I met while riding the shuttles around campus to my appointments.  I had encouraging news, disappointing news, disheartening news and hopeful news while at the CC.

Now I am back to every day life and trying to adjust.  I am trying to deal with the pain, deal with the idea that I have not been taking good care of myself (well, that I knew - I am where I am) and the damage - some of it- is irreversible.  Having to wait another two and a half weeks until I get to see my doctor to discuss the results of the tests and how we will move forward...I hate waiting.

As I try to remember more of what happened after my lumbar sympathetic block, and cope with the people that are haters - I find myself getting swallowed up in the waves of panic and dark.  I am always told how strong I am, what a fighter I am, etc. etc.  Well, I am running out of fight, losing the spark inside me to carry the banner so to speak.  I can't carry this burden on my back...and I know people want to help- but sometimes I need more than a cheerleader on the sidelines.  I can't always be the quarterback.  I'm tired of getting sacked.

As I say this - I try to think back to the feeling I had, as I sat in my room, with the lights off, my favorite songs playing on my ipod, and watching the snow drift by the glow of the stained glass windows...I had hope and I was free and far from the devils that were chasing me off the cliff.  I hope I can find that feeling within me here.... But I am just not sure.