Not Playing "THE CRIPPLED CARD"

I'm not sure when the pain that I had felt for several years started to define me....when it demanded more power? 

I had to whisper the words "I am disabled," the first time I ever said it. Even fifteen years later, it still sounds like I am saying something shameful about myself. That I am less than I was before.

 Pain has made me less tolerant in that way, it's difficult not to take it personally when my family members don't put away their stuff and let the house go. I was brought up to always keep an immaculate house and frankly, it breaks my heart to have lost my physical ability to perform household tasks that used to give me such satisfaction.

 Stumbling over dirty laundry on the floor, seeing the garbage close to the top, dusting, vacuuming that's long overdue, I find it impossible to adjust to my family's cleaning time-table. The frustration spills into anger both towards them and my disability and when I can't contain my feelings anymore, they speed like a mini-tornado directed towards my family.

Loading their dishes into the dishwasher, I spit out the words, the taste already bitter in my mouth, 
"Why do you let your CRIPPLED MOM do this for you?"

In that moment. I felt both intense shame and sadness. I can't say enough how difficult it is to be dependent on people but in that use of the word, "crippled," I was being derogatory and even though it was directed to myself, it was out of line and hurtful to my children.
I never mean to play "the crippled card" but sometimes when I'm frustrated, I slip.
Just for the record, I would never use "that" word directed to anyone else!

When you look up the word "CRIPPLED" in the dictionary, definitions include:


"a term used to refer to a person who is partially or totally unable to use one or more limbs"
"a lame or partly disabled person or animal"
" one that is disabled or deficient in a specified manner"
"a person who is disabled or  impaired in any way"

" something flawed or imperfect"


FLAWED, IMPERFECT..Those words strongly resonate with me although aren't we all flawed and imperfect in some way? However, the fact remains that this "flawed, imperfect spine" has left me  mostly housebound and yet living in the very space that no longer reflects me. I often find that this in itself is as crippling to me as my pain. It is a constant reminder of the capable person I used to be, the wife and mother I used to be. I look in the mirror every day hoping to see "Her" familar face but instead see deadened eyes, and a pale face that rarely smiles.

 I know that I am not alone, there are so many of us that feel dependent living with families who are trying to carry the extra load of that person's former contributions. When I write that word, it strikes me like a blow to the chest because most every contribution that I made, financially, emotionally, physically has been replaced with the little four letter word that stole my life, PAIN!
 There is the physical pain of course but also the pain felt the countless times that I have to see the light fade in my daughter's eyes when I postpone yet another sleepover request. My heart breaks watching my daughter bravely hide her disappointment remembering that I AM NOT LIKE MOST MOMMIES who can host play-dates, host her birthday parties, drive to activities, and participate in those activities. The saddest part to me is that my little girl is getting used to leaving me behind.




Can I see my face in the mirror and not be sad

Could I be a strong, loving mother and never play the crippled card?

Can I live for the future and not be locked in the past?



Some people really take offense to the word "crippled," and I can completely understand because the word can be used in a very negative way and of course, there are better choices.   But the fact remains, that my spine is crippled. It is was a serious S Scoliosis curve that is now fused with metal rods and screws, worn out...basically done, unraveled my nerve centre in my brain sending messages of pain to most of my body. There is no word that describes my pain better than to say it is crippling!
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I don't want to play the crippled card, honestly I would give anything to have my healthy active body again. The words in my blog simply allow me to release some of the anguish of life with chronic pain so please don't feel that I am looking for your pity. I think I speak for a lot of people who are challenged physically or in any other way that we want your understand, your compassion, for you to still see us before we fall from the tree to be blown away in the wind.


All the definitions I read mentioned that the term "cripple," is generally considered offensive. However, there was one definition in the Urban Dictionary that had a different take.

Top Definition. Cripple (Site:Urban Dictionary): 
A person who has a disability and embraces it, rather 
than feeling sorry for themselves. Yes, I am a Cripple, got a problem with that?

I read that definition and it hit me like a punch in the gut, the challenge to look deeper at my face in the mirror! Self-imposed questions fell like leaves in an freak autumn storm!

 Have I ever considered truly embracing my disability when 99% of the time, I try to separate myself from it? 

Can I live in pain and still be truly happy?

 Could I stop apologizing for the things I can't do and concentrate on the things that I can, no matter how short the list may seem? 

Could I teach my children to treat me with dignity but also treat myself with the same compassion?

Can I forgive my body for being broken? 

Can I see my face in the mirror and not be sad?

Could I be a strong, loving mother and know that I am my children's BEST MOM!


Can I feel worthy of love despite my curved spine?

 Can I decide to never play the "crippled card," ever again,  
TO NEVER refer to myself in a derogatory term both in my thoughts and out loud?

CAN I SEE "THE BEAUTY OF MY CHILDREN" EVEN IF THE LINES ARE BLURRED BY PAIN?


It's so interesting that in writing this post, my own perception of the word "Crippled," has completely flipped upside-down.

How could I possibly expect people to view me as someone who isn't broken, who isn't crippled if I couldn't see that myself.

Looks like I have some work to do! The first change will be to never refer to myself as crippled because I said it with complete disdain. I was being offensive and cruel. I need to see the brave woman I am for enduring daily chronic pain and that I can still live a life worth living! There will be tough days that will test me but I must continue to look up. After all, there always seems to be some leaves that despite the fiercest storm manage to hold onto the tree.

REFLECTED IN THEIR EYES

WHEN PAIN BECOMES YOUR CONSTANT COMPANION, everyone is your life will become an extension of this part of your journey. I know that as a mother, it breaks my heart to see my children or any loved ones in pain so I understand the feelings involved in being on the other side. It is my children and my loved ones that see me at my most vulnerable and see the pain etched in my face.

My son, Christian, especially has like an inner radar that can glance at me and just know if I am having a particularly rough day. His sigh is barely audible but I see my pain immediately reflected in his eyes, frustrated and helpless. Christian doesn't often share with me his internal struggle with the knowledge that he can't fix his mom but I know he suffers far too much because of me. At times, I am overwhelmed by guilt even though I know it is not my fault.

  It is with painful clarity that I see how my battle with chronic pain now affects my loved ones
 DAILY as well!  And just like my own emotions that dance precariously on the edge of a cliff....the people in my life also find themselves on the merry-go-round of emotions.

Most of the sympathy is directed towards me.....as I am the one carrying the heaviest physical load but if you look closely, you will see the layers of pain in my children's eyes just as vividly!



One day over the recent Christmas Break, I was sitting holding my little girl's hand sitting watching a show together. Malia could tell that I was having a very difficult time and SUDDENLY,  SHE BROKE, crying and yelling at God to please make her Mommy better. I tried so hard to console her, to remind her that I never have blamed God for my crippled spine. But at that moment, my nine year old who has been praying for me all her life just wanted "A MIRACLE". She wanted me to be able to swing her around, play tennis with her and run down every ball and most of all....ride like the wind on the most beautiful horses side by side and never stop. Malia's breakdown crushed me to my utter soul and I would have given anything to be better...

 JUST SO IT WOULD STOP HER HEART FROM HURTING ANYMORE!!!!


So, eventually, when her tears subsided, we held each other and Malia  hugged me the best way she could without hurting me as I can't really twist or fold into a proper hug anymore. Suddenly, I pulled her onto my lap just like when she was a baby. "Mommy," her eyes were wide open and so worried but I said softly, "Sweet pea, just let me hold you for a moment, and never stop believing that my pain will lessen, we must always have hope. And when Mommy feels like giving up, you must be strong and when you feel very low, Mommy will be strong and we will simply take turns going round and round as long as we need too. Have faith, my sweet girl!"

My daughter "MALIA" is caring, resilient and beautiful from the inside out but I long for the day that we can RIDE A DIFFERENT TYPE of "CAROUSEL," TOGETHER! 
Have faith, my sweet girl!!

"Living" with Chronic Pain: LESSONS FROM "SURVIVOR!"

"Living" with Chronic Pain: LESSONS FROM "SURVIVOR!": WHEN YOU LIVE IN A FAMILY THAT IS TOUCHED BY CHRONIC PAIN, EVERYONE MUST COME TOGETHER IF THEY ARE GOING TO SURVIVE!    Because, be...

LESSONS FROM "SURVIVOR!"

WHEN YOU LIVE IN A FAMILY THAT IS TOUCHED BY CHRONIC PAIN, EVERYONE MUST COME TOGETHER IF THEY ARE GOING TO SURVIVE! 
 Because, being in pain every day is pretty shitty and living with someone who is in pain is also equally rough, so, in essence, you can't lose sight of the important stuff.
I have watched the show "Survivor," since the very first season and no matter if you are a fan or not, there are lessons to be learned from this show. The show itself has evolved over the years and despite players coming into the game that have often studied every episode, it is never fully predictable.
In fact, when you look past the drama of the outwit, outplay and outlast mantras, there are some true lessons apparent. 


LESSON #1: IN DIFFICULT TIMES, OUR TRUE SELVES EMERGE

 When people are stripped of their basic needs and their clothes become tattered and worn, so does their personality. No matter how hard they try,  personality traits will gradually become more illuminated and emotions openly raw. Some individuals become even more startlingly beautiful stripped of their make-up, designer clothes and comfort. But others will say and do things that are incredibly hurtful and cruel making us feel that we have somehow turned back a clock to watch school-yard bullies taunting their victims. Competitors have defended their actions in the past saying that they don't act that way when they are outside the game but most people would agree that it is in these challenging circumstances that their bare self is revealed.

 PAIN, ALSO, HAS A WAY OF MAKING ME FEEL MORE TRANSPARENT THAN I ONCE WAS. The urgency not to waste time and to feel present in every moment is with me 24/7. Even if the moment is to sit and simply cuddle my dog, i am still fully aware. I don't always have the patience to be diplomatic, I am far more blunt as frankly, I don't have the energy to put on pretenses. I may not be beaten down from living 40 days on an isolated beach but I am emotionally, spiritually and physically completely spent. Pain leaves me exhausted and it takes a lot of effort just to be sociable. I don't mean that I feel grumpy, it's just that I often don't have the energy for conversation because I wonder how long I have to mask the pain. Pain can escalate at any given moment so most days, I choose the sanctuary of my own home.



LESSON #2: BODIES ARE MEANT TO MOVE, EVEN BODIES IN PAIN!

In the game of Survivor, people must lay down their individual needs and work as a team for the greater good.The rewards show true joy in the moment of celebration as individuals are bonded together from their combined efforts to win a challenge. You see players push themselves beyond their typical point of endurance and the reward is even precious. I felt that on a recent bike ride that I took with my 11 year old daughter- it was our first bike ride together. Typically, I would sit in the yard or in the house and watch Malia ride her purple bike up and down the path behind our house, her joyous grin difficult to miss. One day, I had been having a better day and was feeling a little more like my former feisty self so I asked Malia if we should go for a bike ride together. Her face, though in disbelief, lit up like Christmas Day. She was undeniably happy but concerned about me in the same moment. Before I could lose my courage, I said a trifle recklessly, "Let's go, I'm already in pain, let's just go. And away we went, me rather unsteadily but gaining speed and courage with every second. It was glorious! We rode the path twice that day..

LESSON #3: NEVER TAKE LOVED ONES FOR GRANTED

The episode that never fails to move me the most is the one when the remaining survivors are reunited with their loved ones. There is a rare moment when alliances are put aside and people are moved by seeing their fellow competitors taken into their loved one's embrace. The joy is palpable! No one seems to really care how they look or smell, they just crave that touch from someone they truly love.. Watching this heartfelt moment, I feel my tears spill down my check, I always picture my loved one's faces when I am in the most pain and it is their love that pulls me back from the edge of darkness. I remember a moment recently when I was unwillingly engaged in a argument with my teenage son and it was over something rather trivial. I finally snapped and begged him to not to raise his voice, I have a more fragile shell than before and find conflict and arguments difficult to manage. "You (encompassing my closest and dear love ones in that "YOU"). YOU are the reason I keep going! 
YOU ARE THE REASON I KEEP FIGHTING in the moments when I can't find my own inner strength. The argument ceased immediately and without words, we came together in a hug. The one benefit of pain is that I fully appreciate the smaller moments, quieter voices, peace. Because of this, I have learned to pick my battles more carefully. I still must be my children's mother but I try to spend far more of my time telling them how much I truly love and accept them AND please, go fetch me a cold pack!

LESSON #4: STRIP AWAY THE STUFF!

Why do we need as a society things to be taken away before we finally (if we are being honest) appreciate people or health that mean everything to us. I think we live in a society that has become so disconnected, so cluttered, so vain (CONSTANT selfies anyone?) that we just live life thinking so much about what is ahead of us instead of what stands before us in that very moment. It is a lesson that is difficult to completely embrace until it is no longer there. We so often gather for someone's funeral but seem to put off making time to celebrate that person in life. 

I am certainly not stranded on a gorgeous island, I have plenty to eat but the pain I face daily has forced me to slow down and appreciate smaller, more intimate moments. Living with pain has stripped me of my ability to demonstrate worth in ways that I used to feel were necessary. It was my perception of what I now meant to my family and hearing the odd hurtful remark from my own husband at times (when he felt overwhelmed) that marked me as not being feeling valued. AND just to clarify, my husband does a tremendous amount of thoughtful expressions of  love but he is also human and being vulnerable makes you sensitive to every remark.
  STRIPPING AWAY THE STUFF CLARIFIES WHAT IS IMPORTANT; LIVING IN PAIN MAKES YOU APPRECIATE LIVING! It gives added meaning to any loving moment.


LESSON #5:  LIFE WILL GIVE US BOTH SUNSHINE AND STORMS


When the competitors first arrive on the island, we are struck by the beautiful images of the island and often hear it described as paradise. But when the grayish skies start to twist with licorice black clouds, you can feel the mood change as the rains descend. Survivors huddle together, drawing to draw both strength and warmth from each other. It will seem like the longest night imaginable and it becomes uncomfortable to see them slowly shut down until we feel their spirits break. 

There are times on the show when you see an individual check out and feel they have nothing left. You can see it in their eyes and feel them shut down. I identify with this feeling so vividly in the nights when I start to panic when there are no  more distractions and my meds haven't dulled the fierceness of the pain so we are left alone together. Sometimes, I cry for hours because I have no place left to put the despair and don't want to wake my husband yet again. Those moments can be incredibly dark but somehow, I usually fall asleep from exhaustion in the wee hours of the morning and start all over again the next day. I often joke that I somehow keep going like the energizer bunny!

Being in pain has definitely slowed down my life and sometimes, I feel I can't bear another minute of these stabbing, PIERCING PAIN that explodes down my spine, up my neck, through my arms and shoulders and often down my legs. I am never without some degree of pain and most times so many places in my body that I have lost track. But if I give up, I will miss watching my daughter's eyes light up when she sees me coming home from school. I will miss watching Survivor with my husband. I will miss the antics of our new dachshund puppies in their joyous play and how they run to Mom (me) when they are tired and need a cuddle. I will miss seeing my children dance, my daughter singing a Spanish song or hear my son play a Rachmaninoff prelude so beautifully, that my heart physically hurts. I will miss seeing the jagged peaks of the mountains, the crashing ocean waves, the serenity of relaxing in the middle of a lake in my kayak. I AM NOT YET READY TO LEAVE!


LESSON #6: DON'T GET COMFORTABLE! YOU NEVER KNOW WHEN LIFE WILL BE SHAKEN UP!

When the tribes are divided or shaken up, it can be a huge challenge to find new alliances, a new way of  surviving! We rarely see, except sadly in third world countries, people actually hungry. It is uncomfortable to see real people in distress and it is so often the reason that people in any type of pain will try to maintain a brave front as long as possible. IT is a person's ability to cope with adversity that will often dictate their experience with whatever their personal challenge is. When I could no longer teach or maintain a very successful music studio because of my chronic pain, I was both angry and terribly sad. I think the most difficult thing for me in my journey with chronic pain has been acceptance and then more importantly, finding new ways of living. My son encouraged me to start a blog so when I am feeling up to it, I try to write. I have more time to help my children with their many self-tape acting auditions and have found tremendous self-worth and joy being involved with this. If I had been teaching, I wouldn't have had the time and this new freedom afforded me the privilege of accompanying both my kids to set when they booked an acting role.  We don't always like the way the cards have been shuffled but it is up to us to make the best of the new hand we have been dealt. Even better, there will still be moments of meaning. YOU WILL FIND A WAY TO "DEAL!"

FINDING PURPOSE IS VITAL WHEN YOU ARE STRUGGLING WITH A CHALLENGE LIKE CHRONIC PAIN!


LESSON #7: FIND WAYS TO BE USEFUL AROUND CAMP! DO WHAT YOU CAN!

The game of Survivor seems to often favour the people with the most physical attributes. But as the game goes on, mental power and inner strength prove just as valuable in solving puzzles or keeping morale strong on long rainy nights. Value comes from doing what you can to your best ability with the most positive attitude. You shouldn't have to toot your own horn, even if not everyone else can see what you bring to the table, just know that it is enough for you to know your own value and personal effort.
. I still struggle with the realization that my worth is not tied up in my body's ability to be physically able. However, I am at the point that I know my husband is still lucky to have me as his wife and my children as their mother. It was only recently, that I finally understood how uncomfortable and sad I used to make my children feel asking them if they were still happy that I was their mother because of my worsening physically disability. Somehow, for several years, I equated my value based mainly on the activities I used to be able to do and my new reality. Yes, I needed help to hold my babies and lift them out of the swing but that was simply the way it is. I may need to ask for help to carry the laundry but I am still damm good at folding it!

SO, DESPITE THE FACT THAT I CAN'T DO THE SAME THINGS AS BEFORE, I TRY TO DO EVERYTHING I CAN! HOW MANY PEOPLE CAN SAY THAT ABOUT THEMSELVES?



LESSON #8: THERE WILL BE UNEXPECTED GIFTS:

Survivors often get to partake in a reward that sees them giving back to the island community. Simple gifts like a soccer ball, bicycles, art boxes, backpacks etc. may be handed out to deserving children that live on the island. The survivors often spend the day with these kids and it is both emotional and heartwarming to see how moved they are by being part of this experience. It is the survivors that walk away with the unexpected gift!

The thought of how I viewed my self-worth makes me cringe today and even worse that it took me years to feel that my kids are so fortunate to have me as their mom in any capacity.My own Mom and grandmother reminded me daily of my worth as a mother and thank God, I finally understand.

 NO ONE COULD LOVE THEM MORE, NO ONE CAN PARENT THEIR TRUE SELF BETTER THAN THEIR MOM! 

We have seen each other in our most broken moments and our love is still fiercely protective. My own children had to teach me to have compassion for myself and to stop apologizing for something that was beyond my control. A complete stranger at a dinner event a few months ago shared with me that she felt my pain was a gift to my children because it has taught them to be more compassionate and developed their inner strength. Her comments brought immediate tears to my eyes, in all my years of suffering, I had never thought of my suffering as an unexpected gift. So, now I try to model for my children the value that I have for myself....my kids had never questioned it but were just waiting for me to catch up! And on days, that I struggle to find that inner value, I remind myself that simply being here to tell them that I love them is enough.

  IT WAS A TRUE AHA MOMENT TO VIEW MY PAIN AS A GIFT TO MY CHILDREN.

 
LESSON #9: IT FEELS LIKE CRAP TO BE PULLED FROM THE GAME!

Whenever a survivor is injured and needs to be pulled from the game, you can the see the pain and disbelief etched in their face. No one likes to be pulled out of a game that they have dreamed of playing for many years and want to see it through. It's taken awhile to realize that I too have been pulled from the game before I was ready to leave. I wanted to be the mother that picked up her babies and held them high, twirling them around making them giggle. I never wanted to caution my toddlers not to run and hug Mommy if she was wasn't sitting down. I wanted to be the mother that played endless tennis with my competitive daughter but instead I have to be grateful to hit with her for five minutes on a very good day. So before, I jump in line for the self-pity bandwagon that I have frequented, I have to accept that things are different- because life as I knew it is different. I hate typing that last sentence honestly but I have realized that I need to be more accepting of this fact. However, even with acceptance, I can say that it still feels like crap that I am on the sidelines of life most of the time. I WISH EVERY DAY TO BE BACK IN THE GAME!
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LESSON # 10: THERE ARE DAYS THAT, DESPITE BEING SURROUNDED BY BEAUTY, YOU MAY BE FULL OF DESPAIR.

I am human and even when I try everything I can to be and feel hopeful, there are days that I am full of despair. Today, the pain has been relentless and my family is 10 hours away by car on a well deserved trip to see ailing grandparents. It wasn't feasible for me to go because driving for hours in a short period of time makes my pain worse but still, waving goodbye tore open my heart.  I hate when my pain scores another goal so I am trying my best to enjoy the peace and serenity but the house is too quiet for me. The first couple of days, I managed on my own and even found a few productive hours. But today, the pain is out of control and I have never felt so alone.

My daughter kept face-timing me and I kept declining the call because I didn't want her to worry about me when there is nothing she can do. My daughter is so incredibly beautiful from the inside-out and finally seeing her sweet little face just about did me in. I so wanted to be there, to be the one to do her hair and help pick out her outfit for dinner. It was a tough moment for both of us.

 I can't give up hope that my situation can improve but until that day comes, I will hold onto each precious moment with the tightest grip possible. These are the things that allow me to move forward, to live another day. Some days are worse than others- LIKE TODAY- but there always seems to be at least one moment that is still exquisitely beautiful that I am glad I was here to experience. It is human nature not to fully appreciate what we have until they have been taken away but every now and again... it doesn't hurt to be reminded! Living with chronic pain has changed everything the way I lived my life but I have found a way to survive with God's grace that he still has a purpose for me.
I HAVE SURVIVED, I AM A SURVIVOR!

"Scoliosis: Taking the Bullet"

It was my piano and ballet teacher that first noticed that my posture was compromised. I was eleven years old and since I couldn't see my own spine in the mirror, I didn't understand the fuss. I do however remember the constant corrections to stand straight and my mom starting me on a regimen of walking with books on my head every night. My piano teacher who had taught me since I was five became deeply concerned as my right shoulder blade started to jut out even more noticeably and a bulge above my left hip became discernible even through clothes. My mom made an immediate appointment with my doctor who was a  pediatric specialist. With great clarity, I remember when my kind doctor immediately dismissed my mom's great concerns with a sigh "Oh, these teenagers always slouch," Although relieved, I immediately stood up for myself saying that I was only 12 and was indeed trying to stand straight. He gave me a small smack on my bum and shook his head saying "No need," when my mom continued to advocate the need for me to have a back x-ray.  This man was a respected doctor so we left feeling we could stop worrying about my spine.

I would be lying if I didn't say I held some resentment to this doctor who had known me for four years and never had me turn around to simply run his fingers down my spine.  People rarely questioned doctors during those days and it was obvious that he didn't feel my teacher's or family's concerns were of any merit.  But thankfully, my incredible teacher who looked at me every single week sitting on a piano bench would not relent and insisted that my mom take me to see a back specialist. The wait time, without any urgent requisition, for my specialist was probably only four months but, in that time, my spine in a rapid growth spurt worsened by the day.

I immediately liked my specialist Dr. Stephen Treadwell,  a very tall kind doctor, who would be the  one who finally confirmed that indeed I had been trying to stand straight but simply could not.  My spine had two pronounced curves of 60% and 65% respectively  that were twisting and pushing into my lungs and towards my heart. Sadly, my case of scoliosis was too advanced to consider wearing a back brace and would instead need immediate surgery. The doctor talked to my mom separately and I remember how, upon return, I searched my mom's face for answers but she wouldn't look at me. I now realize that it was in this particular moment that a light faded from her eyes comprehending this would be a bullet  she couldn't take for her daughter no matter how willing. Every parent who has ever had to hold the hand of their suffering child fully understands this sentiment.




I have to admit that part of my naive 12 year-old self was somewhat excited at the thought of visiting the hospital and having an operation- it seemed like a rather interesting adventure. However, my mom understood the medical details of what lie ahead for me and could barely make it to our car before collapsing in sobs. I remember thinking I ought to be crying as well and tried awkwardly to comfort her, not fully comprehending. Doctors shared little of the momentous ordeal in front of me not- I suppose they did not wish to burden a child.


It is difficult to believe that now, almost 40 years later, the surgery to treat scoliosis, although vastly improved from medical advancements, still involves fusion of the spine. This means that the fused part of the spine will never again move the way it was intended. For me, it was an extensive spinal fusion- the entire spine except for spinal disks L4, L5 and S1.  So, after the surgery, at age twelve, these three little disks have given everything for me to experience some years of normalcy before they simply wore out, I admire how much they fought to move for me every single day and truthfully did not fully appreciate them until they were gone. I am not a candidate for disk replacement (at least, not yet) because it doesn't work with fused spines sadly.

People often ask me what causes my chronic pain and I will attempt to tell you without medical lingo (as I am not a doctor, obviously) but have a pretty good understanding of my back so here goes....So, when your disks are permanently distressed and pressing on your nerves, your muscles (etc.) above your fusion have pulled in one direction and the muscles (etc). have pulled in the opposite way below your fusion, and on top of all that, your spine hasn't functioned or moved in the way it was designed for years, well, perhaps you now understand.

Before I go any further, it is important to note that many schools have now implemented a simple diagnostic test to detect scoliosis. The school nurse asks the student to turn around, bend forward and simply runs her finger down the spine. It is surprisingly obvious to the physical eye when there is any any deviance from the straight line or a protruded shoulder blade. Catching scoliosis early is a huge advantage as other treatments besides surgery (fusing the spine) can be explored.

I didn't realize for years that the Disney classic "The Hunchback of Notre Dame" was a man crippled by a form of scoliosis....I thought he was portrayed as a kind of monster with his obvious deformity making others uneasy in his presence. When I made the connection watching this film with my children years later, tears sprang to my eyes making it difficult for me to see. I was this monster, I remember feeling hatred towards my body, ashamed of my scars.

It's ironic that it has been my chronic pain that opened my eyes to all the years that I wasted being ashamed of superficial scars instead of celebrating that I was still moving AND LIVING without pain. Because now, for close to 15 years, this crippling pain continues to shock me with its intensity and fury and desire to steal my life. But it also makes beautiful moments 1,000 times more precious as I gasp for air and mercy for this not to be the day I finally drown.

TONIGHT, I WALKED A MARATHON!

The music carried me as I walked my first marathon. The words of Kelly Clarkson's new songs "Run Run," and "Piece by Piece," inspired me to keep walking long after I left my body.

 So, it was without a cheering crowd that I crossed the finish line completely alone shortly before midnight. I could barely find my chair before a black heaviness threatened to overtake me but the salty taste of my tears keep me aware.. It had taken me three months and twenty-one days to finally achieve what, for many people, is a daily accomplishment - the magic goal of walking 10,000 steps. It's ironic for me, since I felt the number was unattainable because of my dysfunctional spine,  that I actually surpassed it, 11,124 steps to be exact. And so there I was us, a bundle of elation and exhaustion, and although overcome with thirst, too weak to get some water. With no other recourse, I shakily let the phone ring for my husband -who was downstairs- and knows our private signal for help.  It took some time to gather my words as he stood tiredly in front of me, unaware of my personal victory.

  "Please, could I have some water?" my voice was barely audible and before I could explain, he was gone with my empty glass so accustomed to the many requests that my pain has for him. For a moment, the elation of what I had accomplished disappeared into the void of frustration of once again, feeling vulnerable and dependent. 

But the stark likelihood of falling trying to fetch my own dam glass of water, stared me straight in the face. For a moment, my own voice mocked me " You walked 11,000 steps but now find yourself too weak to go down one flight of stairs?" But I soon realized that "IT," MY PAIN was trying to take even this moment away from me so I pushed "IT" away allowing myself once again, the feeling of ridiculous joy.

My thoughts returned to my husband who shows me many small acts of kindness but, on the days he cannot disguise his rather empty stare, he makes me wish a thousand times over that I didn't have to ask him for anything.  And I know that he wishes a thousand times over that our situation was different and I didn't need to ask. We are husband and wife but at these times, our relationship wavers precariously to the roles of caregiver and dependent. It is its own marathon as chronic pain has shaken our relationship just like any health challenge would. We may promise in our wedding vows to "Stand and Love each other through the good time and bad, in sickness and in health..." but nobody knows what that challenge will feel like until you're there standing in its wake. I can truthfully say that if your marriage stands on any faulty ground, having a spouse with chronic pain will shake things to its very foundation. Sometimes, if you are fortunate, you will grasp each other's hands and once again find firm ground. But for others, the cracks will widen until you can't help but fall into the insurmountable void.

It is difficult to watch a marathon knowing some people will reach the finish line while others will falter along the journey.

Chronic pain won't end a marriage but it will amplify any problem that you already had!

 But regardless of where my marriage stands, Tonight I walked a marathon all by myself and if it's okay with you, I'd just like to savour that for now!