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!

My Unwelcome Companion

"IT" taps me on the shoulder unexpectedly and I turn away muttering "Not now, I'm busy . I concentrate on my task at hand but the next tap is more insistent and I feel myself start to lose my temper.
"I have plans, I have no time for you right now!" I say with true venom in my voice.
"IT" stares me down and it is impossible for me to look away or ignore its presence.
I try again more pleading this time," It really isn't a good time, I thought I might spend some time with my children. I was going to go with them and...
"IT" grabs me by the shoulder so hard that I gasp startled by its ferocity.  I try to walk away but there is no reasoning with it. The PAIN WRAPS itself like a sleek snake up my spine moving recklessly until it is all consuming!
Sorry," I whisper to my little girl, "Mommy can't help you today with your make-up and costume but please come and show me before you leave." Tonight is the Halloween Dance at school and I was looking forward to helping in the preparations.
Her eyes fall for a moment but she masks her feelings well, "That's okay Mom. You go lay down, I understand." Malia then shares a quick story of her day at school but already the pain makes the words float away so I can't hear them.

It is only fitting I guess that this monster pain decides that Halloween is a good night for a visit. If only I could slam the door in its face, scream for it to go away forever. But this is no trick or treater and despite it being unwelcome, it is my companion for the night.
"I HATE YOU!!  just so it's clear" I say as my hot tears soak my pillow.
"I know", "IT" answers purring like a contented cat but STILL, I chose to stay.

Walking Again!

As someone who lives with chronic pain, I am willing to try any treatment that might help give me a more productive life. Everyone is different and their reaction to a certain treatment is unique and so it is important to note that I am not suggesting any particular treatment to my readers but simply sharing my story.


This month has been particularly difficult, I am in the process of getting weekly spinal injections, 3 freezing needles and than three injections into my L4-L5, S1 disks. My pain threshold used to be extremely high, in fact, I felt rather smug at times knowing how much pain I could handle. These spinal injections aren't new to me, I have been trying them out every three months to see if they offered me any relief to my lower back. Because I have extreme pain throughout my spine and neck, it is difficult to access at times and I often wonder if it is worth it. However, lower back pain is often referred down your legs as well...and I will take any relief I can get. So now, they are accessing the possibility of nerve obliation- burning part of the nerve ends that will help allieviate some of my pain.


Finally, the six weeks of excruciatingly painful shots have led my medical team to suggest that I am indeed a candidate to have my nerve burned at L4, L5 and S1. My doctor congratulates me and I feel conflicted as I know the procedure that lays ahead will also be a grueling one...however, if the result is positive, it could help me walk without as much pain.
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Well, it is three months later and I have had the nerve obliation done on both sides of my spine. It is a process that involves 15 needles and a wire carefully inserted to establish what muscles will be affected by the nerve burn. It was incredibly intense but my first physician Dr. Davies was so compassionate and talked to me the entire procedure so I knew what was happening. The nursing team was also wonderful and truthfully, that is the only thing that was able to get me through the 50 minute procedure. Once the freezing wore off, the site was understandably extremely painful for a couple of weeks but I have noticed a difference in the pain that ran down my leg, it has considerably lessened. A different doctor unfortunately did the same procedure on the other side, since I have nothing good to say about him, I won't say anything at all. However, the result is also promising so a reduction in pain for both legs. I wish they could do this procedure in my upper spine and neck but at least, it is something and I am grateful. One other important benefit of having this procedure done is that they now cover six physio visits to explore the full benefits of having the nerve obliation.


For anyone suffering from leg pain referred from their spine, it is something to definitely check out as you may also find relief from this procedure. Walking was one of my favourite activities, especially in scenic Panorama so I have every finger crossed that I will be able to enjoy this activity again. It will be difficult to start slow but an important part of building up strength again.


Well, I have to go....I have two dogs that would like to go for a walk, it has been a long time coming!!