Another Story

Grief is a funny and fickle emotion.  It sucks you in.  A sucker punch of emotions really.  It doesn’t matter what you are feeling at the moment, it completely distorts and turns it all to shades of grey and pale.  Pushing the invisible disease rock up the hill is difficult enough, but grief, oh grief...

I was lucky enough to find a shiny wonderful unicorn in life.  After losing nearly all of my close friends after my disease set in, my best friend and I found one another.  Two spoonies.  We had different illnesses but the same sarcastic sense of humor, love of French fries, the ability to weave the word “fuck” into a sentence so that it sounded eloquent and we just spoke the same language.  We didn’t back down,  we loved the underdog, we were two peas in a pod.  She called me her cosmic twin and the name stuck.  “Love you Comsmic Twin” or “Love you CT” was the sign off to texts, emails and phone conversations.

In June I had my phone light up with her caller ID as I was strolling through my neighborhood with my kids.  We were stopped at our free little library as I answered the call.  “Hi, I know, I know, I suck!  I didn’t pick up your call last night but I was putting the little guy to bed and fell asleep too!!”....I didn’t hear her laugh...and then I heard something that confused my brain even more.  The conversation is painful to say the least....but my best friends partner called me using her phone to let me know she was gone.  That they needed me to know.  They were so sorry.  In a daze I remember asking where she went.  None of it registered to me.  To this day I feel bad that I caused him pain I that moment with that reply.

My best friend was gone.  It didn’t seem possible.  We had one of the deepest and most real conversations when we last spoke.  I am forever grateful that I got to tell her how much she meant to me.  That I was so grateful for her friendship.  I didn’t know it was goodbye.  I didn’t know how sick she was.  She told me how ill she felt....but as spoonies, that isn’t an uncommon thing.

I’ve been paralyzed for the past 4 months since her death.  The thought of writing seemed overwhelming.  To try to put into words any of my emotions seemed too daunting.  She was too important to my life.  The grief too great.  The emotions too raw.  How could I do her memory justice?

So I start here.  With a small story.  An acknowledgment of how deep my grief is.  How incredibly deep and tragic the grief is.  Here’s to feeling a little bit better tomorrow.

I’ll tell you one thin
We ain’t gonna change love
The sun still raises
Even with the pain
~ Another Story
Head and the Heart 

Bermuda HIghway

One place that I've always found peace has been in the car on a long drive.  Well, I suppose technically that's not true.  I had horrible motion sickness as a child and my parents would argue that cars were more of a torture vomit inducing device....but I digress.  After the age of 6, cars were a place were I felt at home.   I loved to read in cars, I'd lay my head down on the middle car seat rest and sleep with the breeze flowing through my hair.  I loved the safe secure feeling of pulling into our driveway after a long trip and that sleepy knowledge that you had made it safe and sound as my dad gently pulled me from my seat and carried me into the house.

As I got older I continued to love to go on car trips.  I traveled a lot for skating competitions, but beyond that I loved to travel and explore.  When I met my husband I loved nothing better than climbing into his car and just going for a long drive, listening to music, talking about life, our dreams, hopes and plans for the future.  I rarely felt safe with other people driving, I always preferred to be the one driving.  With my now-husband, it was different.  I felt safe.  I never worried, never felt anything other than safe bubble that I thought was long gone.  It was like the world didn't exist.  It was just us hurtling through space.

One of my favorite trips was when we lived in Florida still.  It was one of the last space shuttle launches and it was scheduled to go off at midnight.  We lived about an hour and a half away and we decided what the heck, we can't miss this.  So we loaded up our dogs and set off into the night to watch the launch.  We found a great little park just opposite the launch site. We set up our chairs and cuddled up with the dogs while the entire park took on an air  of excitement and anticipation.  The launch did not disappoint.  Just after midnight the space shuttle launched and it was amazing.  It was like watching the sun rise in the middle of the night.  I know I'll remember that site and feeling for the rest of my life.  We didn't make it back home until nearly sunrise the next morning, but it was so worth it.

I miss the freedom to just get in the car and go.  My body has become such an achy prison that I can't go for long in the car.  Not to mention so many other things that are chaining me/us to this place.  I miss that feeling of just hurtling through the dark with our lights casting out over the dark roads, leading us to a better place.  I long to just get out of here.  I was to get us to a better place.  I miss that security of feeling like we had a destination we were going to and a sense that we would arrive in one piece safe and sound.

It's time to load up and lead.  I just need to get a map and mark our destination.

Oh, don't carve me out, don't let your silly dreams
Fall in between the crack of the bed and the wall
~Bermuda Highway 
  My Morning Jacket

Hold Your Head Up High

Bending my knees and rubbing my hands together I stare out onto the ice as I await my turn to step out.  I can visualize the perfect program in my brain.  I see myself soaring pin-straight in the air, rotating fast and landing strong.  My spins are quick and my expressions are perfectly timed to the rise and fall of the music.  As my fellow competitor takes their bow, I step onto the ice taking a few quick steps to gain my footing.  My name is announced and the rest of the world falls away.  I born to do this.  I skate with strength and confidence to my opening position, smile on my face, electricity pulsating through every fiber of my being.  As I wait in my opening position my mind is firm on what is ahead of me.  Strong in knowing that I can accomplish what is in front of me.  I am strong. 

There are mornings I wake up confused, pulled from a far away dream where I am still this girl.  Still strong, confident and assured.  Athletic.  Stable in my footing and stable with my self esteem.  Then the fog clears and I remember where I am.  I am 20 years into the grind of this disease.  I am 40 years old and slowing down like a clock that someone forgot to wind.  When I'm perfectly still people look at me and think I am fine.  "But you look good!" well meaning friends and acquaintances exclaim.  Then my body screams, protests and breaks down as I try to walk.  Force it into a gear that it doesn't want to go into. 

After living with this disease for more than half of my life, I found and lost hope so very many times.  I have learned that some people will try to take advantage of you when you are down.  That some people can't reconcile the new you with the one they use to know - the sick you with the healthy athletic version they loved.  That for many, it's easier if they drop away.  That this disease will strip you bare.  It will take away just about everything near and dear to you.  It will take away your lively hood, your hobbies, your health, your patience, your capacity for joy, your independence, your hopes, your dreams, your identity, your lifespan, your belief in pretty much everything.  It will bend you and then it will break you.  It will reveal to you  just how badly you want to live.  The things you truly care for and are willing to fight for.  The reasons you crawl through hell day after day.  Otherwise, you would stop.  You are stripped to bone, the flesh is gone.  It is at this point you decide to lie down or like a phoenix rise. 

I'm choosing to rise.  It's a slow rise.  So slow, but I'm refusing to allow this disease to box me up in a coffin, a walking corpse for the remainder of my time here on earth.  I'll look for the littlest of victories each day.  One small victory.  I'm going to take back the control of my health, my healthcare.  I'm refusing to accept that what is being done now is the best that it can get for me.  I refuse to allow people to talk down to me when I use my placard parking.  I'm here for me.  This life, it's been a very rough 20 years.  That's not to say that I haven't had joy in the past 20 years.  I have, in spades at times.  I simply cannot accept the current course I'm on.  I was so ashamed of my disease for so many years.  So mad at myself that I couldn't heal myself.  That I couldn't do enough physical therapy, eliminate enough from my diet, have enough mental fortitude to make this go away.  I know that's ridiculous.  That's the same as saying why couldn't I do the same to make cancer, or my congenital heart failure fix itself.  It was my Type-A, have to fix it personality trying to, well, fix it.  I can finally give myself grace.  I couldn't make the miracle happen, that's ok.  I can rebuild and give myself a second chance at all of this.  I'm not dead yet. 

The time will come again
And misery's no rest for wear gentleman
See that humankind is you
Like all the rest, down to
The scratches on the album you're singing to
Hold Your Head Up High ~ Darlingside

Set Down Your Glass

One thing that can be very tricky with RSD/CRPS is the weight of pain that is never ending.  The pain shifts  and changes, some days I feel like I'm tethered to an anchor and being pulled down to the darkest depths of the ocean floor, other days it's a dark cloud that follows me around blotting out my sunshine as they swirl and gather- bothersome but manageable.

As I've gone through doctors and treatments and the inevitable ups and downs associated with this beast, I have discovered one thing about my personality - I thankfully do not have an addictive personality.  It's both baffling and mind blowing to me how many opioids and other crazy drugs they throw at your system in an effort to make something stick on the wall so to speak.  That said, it's already well documented that opioids don't do anything for neuropathic pain.  I've been fuzzed to within an inch of my life it felt like.  I remember crying to my husband- then boyfriend- and telling him that I couldn't handle what they were doing to me.  The meds that they had put me on made me feel like Anna Nicole Smith.  I phoned into work and slurred my way through an explanation to my boss about a bad reaction to a new med for my RSD and thank god they told me to stay home and hang in there.  They were a supportive group at that particular University and I was lucky to have them in my corner.  I pulled myself off the drug against doctors orders and never looked back.  Being blitzed out of my mind wasn't how I wanted to deal with the crushing pain.  While I don't welcome the pain, I certainly don't want to miss out on life as an alternative.

While dealing with pain is difficult in itself, trying to discuss pain with others is another tricky obstacle to navigate.  I've found myself struggling to explain how I'm experiencing my pain, how it feels to me on a particular day.  I hate the pain ratings that I'm asked to give at the beginning of each doctors appointment.  "How would you rate your pain today on a scale of 1 to 10" they ask.  It's such a worthless question to be honest..  I loathe that question.  I always rate my pain less than what I feel.  I don't want to appear a whiny and whingy girl, not to mention you have to save your big numbers for when you are truly dire.  As in close to wanting to die and not being able to hold on anymore.  I usually figure, well, I haven't jumped off the parking deck on my way here, so I'll give myself a solid 5.  Doing good doc.  I then find myself rolling my eyes and snarling at my computer screen when I see the in depth photos and detailed messages on FB of some "horrible" tumble that someone has taken.  "Pardon?"  I think.  I'll squint, look again and scoff, I wouldn't waste a Hello Kitty bandaid on that.  Stop embarrassing yourself and suck it up!  I went through natural childbirth and a childbirth with an epidural, ask me to rate both on a scale of 1 to 10.  Well bugger off, it's an impossible rating system.  If you're an Office fan, I always think back to the rating system that Michael gives on the Beach Day episode when trying to pick out a new manager. 
Michael "Ah...who's ahead in points?"
Pam: "I think they're even.  At various times you gave Jim 10 points,  Dwight a gold star, and Stanley a thumbs up.  And I don't really know how to compare these units."
Michael:  "Check the back to see if there's a conversion."
That sums up just about every doctors visit.  Let me try to translate these crazy feelings and horrible things inside my body to try to make you understand and oh, while I'm at it, let me put it into a numeric scale for you, maybe even with little happy/sad faces to go with. 

Pain is a terribly isolating thing.  It makes getting out of your home difficult.  Both physically and mentally.  It can be so difficult to physically move, to try to experience all of the stimuli in the environment, to focus on what is going on around you while your brain is on fire sending a million mixed up signals and most of them the nasty no good kind.  Spending so much time in your closet trying to find something to wear, not because you are going to be fashionable, because that went out the window a long time ago.  No, you take forever to get ready because fabrics hurt, waistbands are tricky with how they lay against the internal battery pack and wires that are now implanted in your body.  Simple leggings feel like sandpaper and lighter fluid on your skin.  Finding the right combination of fabric and flow takes some doing.  Don't get me started on footwear.  My darling strappy heels of days gone past are but a twinkle in my eye.  I spent my youth twirling in my grandmothers heels.  She was a real fashion plate and I loved a good high heel.  Today I have to look for a sturdy foot bed, soft leather, nothing too tight around the ankle bone where most of the pins are.  Jealous yet?  All of this leads to a lot of days that are just pajama days.  Soft fabrics that don't stress my body out.  Not glamorous and certainly nothing I'd go out in public in.  I have given up a lot in life but I do have some standards still. This had led to so much isolation.  It's hard to stay to connected to friends when you can't even stand to get dressed.  It's hard to attend a girls evening when, even if I can work out an outfit for the evening, I have to navigate a bar situation.  Most people don't even think about it.  It's drinks!  Hooray!  Me?  Is there going to be live music or loud music - that bass line hurts as it cuts through my body.  What's the seating situation going to be like?  Chairs can be tricky but open backed seating or standing can be even more dangerous.  Having my back and ankle exposed leave me open to people touching my back as they pass by or bumping my ankle as they step through.  Both actions are minimal to others but feel like a brutal punch or like lightning bolts to me.  My brain is overwhelmed trying to stay alert for potential danger and people bumping into me that I can't even process conversations properly.  I'm left with a time delay in my speech and feel out of the loop as I struggle to both follow along with the group and process my environment.  The very thought is both too overwhelming to attempt and at the same time something I very much don't want to miss out on. 

I miss the old me.  I miss the carefree me.  I miss happily plunging into a crowd and dancing around to the thump of live music.  Being able to hold onto the hand of my guy and squeeze behind in a crowd, free from worry about how someone may bump against my skin.  I miss the feeling of running behind and being able to simply vault up a flight of stairs two at a time.  There are so many things in life you take for granted when you can simply do them.  I'm trying to make sure that I stop and appreciate what all I can do now.  That I appreciate what this battered and broken body still does for me.  Because I know like a worn out clock, I am slowing down.  I am struggling more, yet there are still a lot of things that I am able to do.  I want to appreciate them while I can.  I want to drink it in.  I don't know that I fully appreciated the last time that I could many of the little things that I miss.  I'm trying to make sure that I appreciate all that I do have now.  Some days that is easier said than others.  Many people don't understand why I am what they perceive as withdrawn or changed.  But then, I get it.  I only go out in public when it is a good day for me.  They don't see me at my worst.  They don't see how horrible it truly is for me.  It's hard to understand what my life is really like.  I'm going to grant myself and others some grace here.  It's ok that I'm not able to do what I had done before, that I can't be the person I once was and wished I still was.  It's ok that others misunderstand me.  That I have fallen out of the friend group.  It's life.  It's all different seasons.  Some are just a but sunnier than others.

"You say I'm cold
I'm just not the same
As I was a year ago
And each minute since then"
Set Down Your Glass - Snow Patrol

Holocene

I was not magnificent.....

When my littlest was under 2 years old I found out that I had to have a surgery that would put to an end my ability to be on the ice.  To many people this would be an "Eh." moment in their life.  For me, this was devastating.  I had skated since the age of 4.  I had been a skating professional.  It had been my life.  I loved figure skating...it was being yanked from my grasp and way too fast.  Our town was getting a new multi-million dollar rink at the time and as a favor to me; my husband, myself and my daughter were allowed to skate on the surface before anyone else, save for a handful of people.  A dear friend of the family called some favors and got us on the ice.  I still treasure these photos, the last time I was on the ice. 

We were a family of three at the time.  My daughter was just 18 months old at the time.  She was all smiles. I loved being on the ice with her and we had a blast skating as a family.  One month later my spine was split open and the long march down a mess of tangled surgeries and unfulfilled promises began. 

My daughter continually asked for skating lessons for her entire life.  I always had excuses.  It was so hard.  I was able to coach her.  What if she was hurt like I was?  How could we go forward? 

We got pregnant again and it seemed like maybe we'd take a break from all of the skating talk.  And we did.....for awhile.  It seems that you can only hide from things for so long.  My daughter continued to want to skate.  With her intense desire to skate, so came her brothers.  After many excuses and reasons why it wouldn't work, we signed up for lessons. 

The first week of lessons, after watching a woman work with my youngest, my littlest, whom I had never been able to be on the ice with, someone who was so sub-par in skating skill (brutally honest), I went home and cried for hours.  If this disease had not robbed my of my balance, ability, stamina, life, I would have been on this ice with my little man instead of her.  I had been used to the idea that I had to give up skating until it came to my children  Then to see that someone so sub-par be allowed to teach by children.....It make me wonder what I did to anger God.  What I did to make this punishment proper.  As Johnny Cash says "You can have it all, my empire of dirt"

That's how I feel.  I feel robbed. Sub-par people working with kids to teach them what I could.  I feel strangled at the sidelines.  I feel like a person without a country.  I was am accomplished skater, then proven ranked Professional Skater Association and Director of Wissahickon Skating Club.  Karen on the other hand had never done anything at all.  The most she had ever done was....well, she had had swooped in while I was helping out.     

Bookends

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