My House

My house.  My glass house.  I feel like I'm trapped in a glass house a lot of the time.  I'm left on the inside looking out.  The world passes by and I'm a spectator, my nose pressed to the glass, fingers trailing down the pane.  My body is a temple and that is one I'm trapped in as well.  They say you should worship your body like it's a temple...I feel like mine is a hated religion.  Mine is one that of a polarizing sect and the village has come pitchforks and baying crowd and set it on fire.  It's all so strange and unfamiliar.

As an athlete - my pain therapist is working with me to not use that term in the past tense - I struggle to get the fix I so desperately want.  I'm like a junkie trying to score a fix, needing that desperate bump before falling into some horrible jerky, shivering withdraw (or at least that's what I envision after many Netflix episodes of Breaking Bad and Intervention).  The only difference, I don't need or want drugs.  I want to feel a burn and a sting of a different sort.  I miss pushing my body to the limit, challenging myself, feeling the burn in my muscles, maxing out my lungs, pushing myself to the edge and seeing just how far I could take things.  How many reps could I do, how heavy could I lift, how far could I go, how long could I last - I loved the pure exhaustion, challenge and sport of it all.  The only problem is, there is none of that for me now.

My body is now my enemy is doesn't allow for me to work out the way I miss.  I have to be so careful with myself.  I have fallen down our steps if I'm too bold by not carefully holding onto the railing and thinking out each step.  My knee is wrecked from the latest crash down the steps, an aching, throbbing, creaky mess.  I can try to gently ride a recumbent bike or use the therapy pool - but nothing like the breathe-snatching, lung crushing, muscle burning workouts that I miss.  The tennis, golf, skating, hiking and all the other random activities that I never gave a second thought about, always assumed they would be hobbies that I would do into my old age.  Well, old age is a funny thing.   My body is that of an old, old woman.  My mind doesn't know that.  In my mind I'm still young.   I struggle to remember my age most of the time.  I don't know if it's because the one spinal cord surgery fell on my birthday and that sort of wiped that one out, or if I stopped caring.  Either way, in my mind I'm still a young woman.  I'm ready to fly and glide and I've got so much life left stretched out before me.  Then I stopped and remember what all has happened to me and I'm no longer so sure that is the case.  I mean, it was less than 3 1/2 years ago doctors were preparing my husband for the odds that I might not pull through, that I had been treated to the full extent of medical capabilities.  How much can you push and ask of one body?

I'm often left feeling like a race horse at the big event.  It's the Kentucky Derby - I'm all loaded up, in the starting gate and we're ready to go.  The crowd is rowdy, loud and cheering.  My muscles are quivering, the adrenaline is pumping and surging through my body, my heart is racing and my mind is already racing and mapping out all of the possibilities.  Then it happens - the race starts!  The only problem - the gates are thrown open and the horses all race out, except for me.  My gate simply won't raise.  I'm left in my stall- the gate pinning me in, my heart drowning me in hammering thuds, my muscles ready to explode -and yet there is nothing I can do.

The only problem with this scenario, it's not a nightmare, it's how I feel so much of the time.  It's how I feel about life.  I think that's not helping my panic attacks at all.  I've had a lot more of them lately.  I've had a much harder time calming down from them.  I feel like I just want to do anything to get that feeling out of my system - but I can't.  It's driving me crazy.  I feel like there's already so much that I have to fight and battle on a daily basis, this is just so much more to bear.  I need to find a way to cope with it.  Find a way to shake it out of my system.

When I was a coach I had some parents express to me that they couldn't understand how I could stand at the boards and remain so calm and relaxed while the students competed and tested.  The parents were always very keyed up and and nervous.  I always explained that if I appeared nervous that would only make my student nervous and it would be a giant snowball effect, therefore, even if I was nervous, I never showed it.  I always was calm, slight smile, totally Switzerland there.  I feel like that is my life.  I'm constantly showing others my coaching game face.  The "everything-is-fine, don't-worry-I've-got-this, smile" face.  I'm not going to show others the pain, the worry, the panic, the anguish, the fear.  No, I bury it, I shove it deep down.  I don't show others how badly I wish I could join in the normal every day things that people do.  Or how much I miss playing golf with my husband.  How badly I wish I could run and race across the fresh spring lawn with my daughter and hike with my dogs.  How much I wish I could just have an outlet or a hobby.

From the outside, I'm fine.  I'm ok.  From the inside, I'm a town that's been ravaged by a tornado.   I'm swirling, tumbling through space.

Welcome to my house
Play that music too loud
Show me what you do now
We don't have to go out
Welcome to my house

My House - Flo Rida

Gone Gone Gone

What do we really leave behind?  I've poured myself into so many projects, so many people, so many things...what has that left behind?  Is there any piece of the old me still floating is space out there?  Is there any pre-RSD Sara out in the world still floating and dancing in the wind like the fluff of a dandelion?   My students that I spent hours and hours with, the colleagues and coaches that I worked with.  The friends and faces that use to know me - is there any part of me that still exists out there?

I wonder these things sometimes, not in a narcissistic way.  Well, maybe it's a bit narcissistic.  I mainly wonder if any of the spirit that was me still is remembered, still exists in this world.  It's weird, I always think of myself as someone that died.  There is the me pre-RSD and the me post-RSD.  That has resulted in two totally different people.  I wish that wasn't the case.  I miss the girl that I use to be.  I miss the carefree girl that I was.  I miss the confident person I was.  I miss the self-assured, I can tackle the world, I can handle anything the world can throw at me girl I was.  I don't know how to explain it to people.  It's really like the girl, the woman that I was - she was murdered.  It was a nasty thing, and she was thrown in a shallow grave in a hasty manner and maybe some day that Sara will get the proper burial that she deserves, but in the meantime, I miss her.  I wish she could find peace.  I hope her soul can rest.  In the meantime, I'm left in the void.  There is an enormous void in my soul, my heart, my mind - I'm not me.  I'm some lesser version of the old me.  Some photocopy that lost the ink, some half-assed, bad imitation of the me that I was.

So I'm left wondering, I spent hours with people pouring my time and energy and spirit into their life.  Did any of that last?  Did any of that stick?   Did any of that matter?  Do any of them even remember me?  Not that it should matter at all....I just can't help but wonder.  I remember every single student of mine.  I remember the students I had to leave behind.  The ones that got left behind in a hurry when I was hospitalized with problems that had many questions and not a lot of answers...finally RSD flagged and came up - but at the time, I was just a mess.  My life spun out of control.  I was an exhausted mess.  My body was beginning it's breakdown and it made no sense to me yet.  It still makes no sense to me - but at least I know to expect it.   I still feel guilty for leaving them behind.  For not having answers for them.  For being too sick and scared to be able to explain to them why I had to go.  I miss them.  I miss coaching.  I miss my old life.  I love my life now - well, I love my family that I've been blessed with.  But this RSD thing...I could do with out it.  I'd make a deal with the devil to rid myself of it most days.

So, once my old self is gone....is it just gone?  Is the old me just dust?  Is there any part of me still hidden deep down , crushed and buried in the rubble of the RSD landscape that can be dug out?  Are there parts of me that can be salvaged?  I work with my pain psychologist and I still haven't been able to feel worthy of feeling happiness.  I've been type-A my entire life.  A perfectionist, a performer, a pleaser and someone that completes the task.  I have been failing - failing at forcing my body to rid itself of the RSD.  I can't make it override the RSD misfires, I can't make myself ignore the pain, I can't make this go away and it drives me nuts.  I feel like a failure because I can't make it go away.  There must be some part of me still buried in the wreckage that is left.  I should be forgiven if I feel joy or a fleeting smile and relief with my kids for a moment or two.  I struggle with feeling like I'm not worthy of any happiness.  None.  What do you do with that?  How do you move forward with that sort of burden?  Well, that first thing is you talk about it.  I'm at least doing that.

I hope I can uncover some part of the old me.  I miss her.  I don't know how to feel differently at this point.  I'm lost and sad and feeling like I don't belong here any longer.  I'm simply a cork bobbing along the ocean...no one is going to notice that.  I'm hoping to change how I feel, not a huge amount right away, but at least chip away at it little by little.  Maybe soon enough my feelings of self loathing, self doubt and hatred will be gone, gone, gone.

You're my back bone
You're my cornerstone
You're my crutch when my legs stop moving
You're my head start
You're my rugged  heart
You're the pulse that I've always needed

Gone Gone, Gone  Philip Philips 

Let her go

I've struggled with writing this blog post.  I've struggled with writing anything over the past week or more.  My life always has ebbs and flows, ups and downs.   My RSD has the upper hand more often than not and I have been trying to learn to cope better with that.  The problem is all the other pieces of life that have been piling up, weighing me down and dragging me through the floor.  Each night I would try to get comfortable, try to find a little piece of clarity to write and sort out my mind a bit and that simply would not come to me.  Each night the buzzing in my ears was too loud, the jack hammer behind my knee cap too painful and insistent, the swelling in my ankle to explosive to try to focus on anything for more than a brief shooting star second.

Two nights ago we experienced our first thunderstorm of the season.  A right of passage here in the northeast, a signal that at last, spring is officially underway.  At around 1 in the morning as the thunder boomed in the distance, my sweet lab came thundering up our stairs herself and burst into the bedroom looking for reassurance.  As she has aged she has become less tolerant of the storms.  We're a lot alike, although our lack of tolerance displays in different ways.  I myself wasn't asleep - my body was wired and angry at the sudden changes in pressure.  I got up and gave her some kisses and ears rubs, shut the door again (she can open any door in our house no matter how firmly you have it shut) and laid back down with her flopping next to my bed.  I watched another episode of junk tv on Netflix while I idily stroked her fur and drifted off to sleep.  I woke up to sunlight and an hour I hadn't seen on the clock in quite awhile.  I had actually slept in until 8am - something I hadn't been able to do in months.  I smiled and was hopeful that maybe this was going to be a good day.  That thought lasted for a hot minute.  As I was working to get my legs under me and get moving out of bed, my husband informed me that something was very wrong with my sweet dog; that he was afraid she had suffered a stroke in the night.  In that split second, I went from having a great start to my day to my heart shattering and wondering just what on earth I did to anger God so much.  I seem to keep taking hits on the chin and I'm having a hard time trying to keep it together.

My little blonde dog, she has been with me for a decade.  She has seen me through multi-state moves, studio apartments, townhomes, first homes, living the single life and life before I knew my husband.  She has always been very tuned into how I am and knows when I'm in a flare and has looked over me, worried over me and loved me something fierce.  She's been the best little buddy a girl could every hope to find on a drive to a rescue group in Delaware.  She's not gone yet - and I'm certainly  not counting her out, she's rallied before, but she's hurting.  She's walking like a sorority girl at the end of the night down College Ave - listing badly to one side with a head tilt, her eyes zig-zagging back and forth like she's got vertigo something fierce.

The thing that I'm finding so incredibly difficult on top of dealing with watching my fur baby go through this and making sure that she is comfortable, that she isn't in distress and that I'm being a good mommyy to her - is that I've got other people wanting to tell me how to feel, how to act, how to express myself....I feel unwanted opinions rammed down my throat and it's all I can do to not light up everyone around me.  I've got the people leveling opinions to me not only on the situation with my dog - but on my feelings overall and how it works into the grande scheme of things.  I don't quite remember asking for their opinion, I'm not quite sure how they can have such an expert opinion when they so very rarely get to see me in person and when we talk on the phone- they barely can focus on what the conversation is about because they are too busy talking to the kids and adults in the background on their end.  Some of what they said was extremely hurtful.  Extremely hurtful.  I'm not sure why they felt like now was the time to jump on me.  I guess I seemed like I needed to feel like I wasn't living up to being a good enough parent - what with trying to balance RSD and parenting.

My husband and I are a bit at odds on the issue too.  I have very difinitive opinions as to how things will and should go and while I heard him out with his thoughts, my final word was - she is my dog.  My dog.  My decision.  That was not to hurt him.  That is a fact though.  She is my dog.  She is my dog, has been from the start.  I don't agree fundamentally with some of his views and therefore I trump him on how it will be. I am a very stubborn person.  You almost have to be with RSD.  It's the only thing that keeps you going.  That crosses over into all parts of my life though.  I will dig my heels in.  If I feel passionately about something, I am going to defend that feeling, fight for that idea, argue that point - that's just who I am.

I guess what I'm trying to say is.  My heart is heavy.  My head is swimming with what to do, how to handle everything that is going on and what my next steps are.  I'm angry that some people just want to tell me what to do and how to do it.  That's the worst thing you can do with/to me.  You try to bully me into something and I will only dig my heels in harder.  Honestly, I'm just in survival mode right now.  Take care of my dog that had the stroke, my dog with the rare auto immune disease, my kids and then make sure my walls are built nice and high around my heart.  Why you ask?  Because I can't take this shit anymore.  I'm done.  I can't get hurt or blasted for my opinion if I've just dug a moat and stay hidden behind a wall.... I'm done trying to communicate.  Apparently RSD makes that too difficult.  Or, you know, ask someone else and that have other theories....half cracked ones, but other ones..

I'm exhausted  I'm done.

Staring at the bottom of your glass
Hoping one day you'll make a dream last
But dreams come slow and they go so fast
You see her when you close your eyes
Maybe one day you'll undestand why

Let Her Go  Passenger