FREE-FALL TO OBLIVION

The dream was vivid and incredibly beautiful; I was riding horses with my darling daughter, Malia and we were laughing and the day was perfect.  I was riding a gorgeous paint, a mare who was snorting and full of vitality. Malia was on a stunning bay mare, the colours of her hair mingling with her horse's mane. We were just approaching a small beautiful stream when I became distracted, my thoughts were unsettled  as I started to transition towards waking up. I remember distinctly experiencing a brief moment of panic as I tried desperately to remain in the dream,, I wanted to stay with my horse!

 Once awake, I lay motionless and felt a tear roll down my cheek upon the realization that indeed, I had only been dreaming.

 I had tried to outrun it in my sleep and for a moment had felt tremendous joy and peace but now awake felt its return, so unrelenting and powerful, it was hard to comprehend. “It” was my chronic pain, my constant companion during waking hours and the very thing that controls my life! I lay awake for at least 15 minutes, simply acknowledging all the different types of pain and where I felt it in my body. Sometimes, when my mind is far away, it can actually be fascinating to know all the sensations and intensities of pain. Fascinating until the brain's signals of pain comes into your senses and makes you want to scream!

Pain, a four letter word like so many others  (ie love, hate) and the power it wields over me has humbled me to my core. It is impossible to describe what it feels like to have pain that doesn’t leave your body and is always there for you to deal with in your mind. The most frustrating part of it is having it try to take over the very essence of the person you used to be and change you inside out. Once in a while, I catch glimpses of the former me…the energetic, vivacious woman who loved to play tennis and hit my forehand lazer shot, go for power walks, ride bareback in the snow, and swim in the bluest lakes. Now, I see someone I barely recognize! I move slowly, I'm bent over, my face has become  old and the worst of all, my eyes have lost their spirit.

I have experienced a chronic pain free fall and upon landing have splintered into thousands of pieces. I often feel when I walk around the house as though I am covered with a muggy, heavy blanket, the immense pressure pushing me into the ground and no one seems to see me. It has become the new normal to see this wife and mother wearing the face of  pain and sadness - it is no longer a shock to see me like this.

 I am overcome with such immense sadness, I recognize that many moments throughout the day and night, I wish to die.

I wish I could say that I lived with this condition with tremendous bravery and never lost hope but I am not living a fairytale, this is my reality. There are moments when I feel brave, every time I see my kids walk through the door from school, or when I tape an audition. When I pour out my feelings into one of these posts, I feel a sense of worth. But the days when I experience a productive afternoon are fleeting and I can't help but feel the same questions playing over and over in my mind.

 Do I still bring any value to my family, or to myself?
 How much of my new life is bringing my family to their knees? 
Are they telling me the truth that they still want me to fight?

 There are three events in the next 24 hours that my family will go to without me, it is simply easier that way. It's no wonder that I feel that I have disappeared already sometimes! A minute ago, when they were all standing at the door going to an event that required a lot of walking, I quietly commented that perhaps it was time that I consider getting a wheelchair so I could go next time. But the fact that I had to be the one to suggest it left a bad taste in my mouth, I wonder if they really just don't want me to go because it is so much more of a hassle. Believe me, no one wants to be an inconvenience!

It is no wonder that I love my dogs so very much that my heart hurts because of how much they mean to me. At least, I have their most wonderful companionship! I can be having the lowest moment and then my dog's overwhelming joy in greeting me just uplifts me to a point that I am once again one of the living.

Dependency has come slowly to my chronic pain’s journey and I fought it every moment. However, the saddest feeling I experienced was when I didn’t care to fight anymore and simply accepted that I would always need to be cared for and dependent on the mercy of others. It breaks my heart and my spirit but I tried for so many years to carry on despite the spine that I was given and please don’t think that I have thousands of things to be truly grateful for in my life. I have been truly blessed! 
I gave birth to two of the most beautiful and incredible children in the world. I love Christian and Malia with my entire being!

I should clarify that I very much WANT TO LIVE but just don't quite know how to navigate with this amount of pain dictating my life. 

Sometimes, it truly is too much and I am tired. SO VERY, VERY TIRED!

I sleep different times throughout the day and night, this very deep sleep is my body and mind's way of coping with pain that is unbearable. I guess you could say that sleeping at different times of the day could be inconvenient. At first, I felt frustrated by it and my inability to stay awake. But as days have gone by, I feel differently.

 I feel no pain when I am sleeping and therefore, it is truly the only time, I am at peace.  Of course, I miss the time to be productive, I miss time with my children and dogs, I miss time to visit and even talk to my grandmother and I hardly ever see any of my friends.
I, however must cope with this high level of pain and therefore, I am grateful for sleep! So, I create a beautiful space with lit candles, tidy room and cozy pillows. I often meditate until the sleep takes me away where I can finally rest!

The Medication Dilemma

Sometimes, when I write about my daily struggle with chronic pain, I need to express myself as though the pain and I are engaging in our own private dialogue- sometimes we manage together and sometimes we don't. No matter the day, what I do find helpful in simply being in the moment and letting the words flow honestly. When I started this blog, it was simply a way for me to share what it can be like to suffer from pain every single day.

 For some of my readers, the words will strike a chord of truth and shared compassion and for others, it may be able to give them insight to what it is like to live with a chronic condition. The one thing I know for sure if that I am not alone, there are so many people that go through both emotional, mental and physical pain. We all must find a way to give a voice to the struggles we go through in life and for me, writing this blog is incredible therapeutic and for that, I am most grateful.


So many people ask me what medications I take and I don't have any problem sharing this information but please note that every condition is unique in itself and medications should only be discussed and recommended by your own doctor. However, in saying that, it never hurts to be made aware of different meds that are helping individuals deal with their pain because it may be something your doctor hasn't explored with you yet and could indeed help you.

For me personally, I went through years of refusing medications but looking back at that time, I had a false sense of that I was this heroic young mother out of my mind some days with pain but hey, I wasn't taking any medications. "Good for you," people would smile and congratulate me like I was pushing through no matter what, that somehow I was better than those people that had to succumb to taking medications.

After suffering for at least four years, I began exploring medications with my long-term family physician to have me live a better quality of life. Please note that my doctor and I had been trying other alternatives to medications that included physio, exercise (swimming) and massage therapy. The addition of medications was never intended to replace these other important aspects of my treatment but I will discuss that in another post.

The most effective medication for me was Lyrica as this was a non-narcotic pill that helped directly with nerve pain. Within a week, my pain level had dropped dramatically and I was estastic!!
The Lyrica didn't take away my fused spine and bulging disks and all of things that came along with that but it did help reduce the pain level that I was still able to teach my music students and enjoy some activities with my family. Every moment that I felt more like my former active self just filled me with joy. I even played tennis once a week, sometimes I could barely stand up but one I got my body warmed up, I did manage. I couldn't run down every ball like before but the feeling of striking the ball with my racquet was truly wonderful- I felt alive again and so grateful.

The Lyrica helped (and still helps) me for at least one year before I needed to increase my dose because my spine was becoming more damaged with time and that was simply my condition.


I still remember vividly the conversation I had with my doctor when she told me that I would always have pain and always need a full treatment plan that included medications. At first, I was in shock and denial and I thought I could possibly outrun this thing and be free of pain one day.



So far, my doctor has been right and my medication plan has grown to include Cymbalta and Celebrex to help me have moments that I can manage better with my pain level. Sometimes, that moment is for only one hour and other times, it is a block of four hours but no matter what, I will take what is given to me. At the end of the day, please don't judge me or other people who need medications to help give them quality of life. I will continue to be open to other options, other treatments and never be complacent in my search to help me live the best life I can with my spine. But for now, I could not handle my level of nerve pain without the help of all my treatments that include being on medications. Personally, I am incredibly grateful that I live in a time and country that I have access to this help.

 I am grateful for my incredible family and friends who inspire me daily to never give up hope.
 Living with chronic pain  is definitely a difficult struggle but remember that you will still have very meaningful moments of joy if you remain open to it and when those moments come, keep the door wide open!

THE JOY OF WINTER

Watching my family drive away down the road cemented the decision I had made following the school break to stay an extra week in Panorama alone with two of our dogs. I was both exhilarated, nervous, and a bit giddy as I realized that we would have to take care and rely on each other no matter what lie ahead for us. It was January 4th in the dead of winter and my back disability had robbed me of my precious independence for many years. Staying alone, excluding my two dogs, was an unexpected gift.

I looked down at my gorgeous black/white sheltie who at almost ten had regained her youthful lively exuberance when two adorable miniature dachshunds had come into her existence. So, it was only fitting that I had allowed My Kiesa girl this small pleasure in allowing her to keep one of the pups, the golden angelic Oliver to keep us both company.

I looked down at them and they looked back at me with great anticipation wondering what their Mom's next move would be.

My voice rang out joyously, "well, let's start by getting you some proper dog blankets." I took the older towels my husband had been using for the dogs and threw them aside.

Kiesa and Oliver seemed very pleased at my enthusiasm and followed me willingly to the linen closet where I pulled out two warm, large snugly flannel sheets and  a comforter. So, it was in great anticipation that we all settled, after much enthusiastic fluffling of the blankets, snuggling contentedly together on the sofa.





Outside, the snow continued to blanket the trees and and despite the familiar pull of pain, I could not wipe the smile off my face.

My disability did not let me experience a feeling of independence very often and it wrapped around me as intoxicating as a warm brandy.

I was only 30 minutes in but already the "joy of winter," had exploded in my heart.



So, the week unfolded with both positive moments and some difficult ones of managing alone in pain. Typically, it would be my dogs that would uplift me every day as they embraced the new house rules with great abandon. Of course, they had to sleep in the bedroom with me as I would be too lonely and nervous without them.Oliver slept in his kennel in Mom's room and Kiesa had her cozy baby bed right beside him.

It became a rather important evening ritual watching Oliver drag his sheet proudly into Mom's room into the baby bed, fluff it and arrange it perfectly for at least two minutes before laying down utterly satisfied. Kiesa and I would watch him until I couldn't bear it and I would say one word, "Oliver," point towards his kennel and watch my small, devastated doxie  walk slowly the few steps into his kennel. 

Kiesa would immediately jump into the vacant little bed, flounce herself around and settle down immediately as if to say, "thanks Oliver, you made the bed stupendously for me! I couldn't bear look at Ollie who would be staring at both of us with his enormous Snoopy Dog tragic and tearful eyes, I could hardly bare it, and would take him out to at least cuddle for a few minutes and remind him that he should be at least grateful to even be in Mom's room and that I would love him to be out of the kennel but past deeds had left me with trust issues. Eventually, we would all sleep peacefully, thankfully without snoring or bad smells.

We found our routine quickly, going out quickly in the morning, eating breakfast, cuddling, going to the basket and taking out all the toys, and playing fetch with Mom. Then Oliver started his own shenanigans by continually stealing Mom's underwear particularly her bra to run joyously through the house with. Every day, I would collapse in laughter seeing this adorable golden streak peal out of the laundry room with one of my bras firmly grasped in his doxie jaws, and run like a crazy dog possessed through the house with Kiesa barking to encourage him. Oliver became a master at recognizing this undergarment stealing them from an open suitcase, a chair, etc. It seemed to become one of his missions in life, to steal as many bras from Mom as possible and distract her from her pain.

Then, every day, we would get dressed for our walk and that meant even the dogs would need to wear their coat and their boots depending on the temperature. Since walking has proved more difficult by the day, this would be a tremendous mental and physical undertaking but when you have one slightly neurotic sheltie spinning around with delight because it was time for her dog and another neurotic young doxie who would collapse like a heap of jello once he had his winter gear on....well, I simply had to give it my best. Putting on my own winter attire, I would glance nervously at Oliver, who lay stunned on the floor wondering if he would expect to be carried because I had insulted his dignity by making him wear a coat. Thankfully, the second the outside door opened, Oliver would bolt out like he had been struck by lightening so it was a relief that I had his leash firmly in my hand. So, urged on by my Oliver's new-found enthusiasm and Kiesa's joyful yips, I  thrust my legs out determinedly, the wince of pain still pulsating but trying to propel that crippled spine of mine stubbornly forward into the beauty around me.

There wasn't one person on the path, it was our own exclusive winter paradise. Each step was challenging, and at times, I would feel such an explosion of pain run through my entire spine that it would make me gasp and stop momentarily. Oliver and Kiesa would fix their inquiring gaze on me to see if Mom was okay and still hopeful that we could keep walking. Everywhere I looked was so utterly beautiful. I looked back to ensure that I wasn't too far from my house, it was solely on my shoulders to make it all back safely. However, it was with steely determination that I walked my dogs today! For years, this had been one of my most beloved outdoor activities.I was determined to walk my dogs, this had for many years been one of my most treasured activities, and now with my pain, it was nearly impossible.







The weather, for winter conditions, was thankfully mild, not even the tiniest breath of wind. It was as though the angels in heaven knew that the all the pieces needed to fit to make this walk possible.

I had an immense feeling of sincere gratitude.How fortunate I was to be here! How fortunate I was 
to have lived to see such unimaginable beauty!

THE PAIN OF WINTER

I THINK THAT IT WOULD BE SAFE TO SAY THAT THOSE OF US WHO SUFFER FROM CHRONIC PAIN FIND IT MORE DIFFICULT TO MANAGE IN WINTER!
Pain from arthritis and inflammation is aggravated by colder temperatures and  for me, personally, it often feels as though my body is frozen in concrete. It's no wonder why people who retire are drawn to places with warmer temperatures, they are simply kinder to our body.




I feel at times conflicted about the thought of one day, leaving winter behind as when the temperatures are reasonable, I still find so many things to love.  I find it both incredible beautiful and peaceful to watch falling snow and when paired with a vivid blue sky, it is truly breathtaking. Roaring fires, crystalline tree branches and festive lights always make me smile but the pain of winter  encompasses my body like an ugly bulky coat.





 I am very fortunate (along with my family) to own a property in a mountain resort called Panorama and we just recently began staying part of winter there, generally dictated by school breaks. Despite the overwhelming scenic beauty and utter peace, it is a bittersweet time with my family.







Sitting in a mountain cabin with a roaring fire, a great book, four dogs, (yes, four!) and my family is indeed a gift! But there are many times that I am left alone while they ski, toboggan, snow shoe, skate and do other outdoor activities. Please understand, I am not looking for pity, it is simply what happens when one member of the family cannot participate because of a disability.

Years ago, I skied with my husband several times, even going on an "expert only"run once, well beyond my capabilities. It was actually my handsome boyfriend who pushed me to go well beyond my comfort zone, and under the "impress the boyfriend," spell, off I went. That man is my husband now and even though that particular experience was quite frightening, I am now grateful for that memory. Even if skiing wasn't my forte, being extremely active was a joyous part of my daily life so I never dreamed that I would never have the opportunity to ski, even a beginner run, with my children.









Malia and Christian have only known their mother TO BE THE ONE ON THE SIDELINES.

 







SITTING, NOT DOING. RESTING, NOT PRESENT, AND ON GOOD DAYS, OBSERVING BUT NOT ACTUALLY LIVING THE EXPERIENCE.



IT ONLY TAKES ONE LOOK AT THEIR CONTENTED FACES TO KNOW ALL I HAVE MISSED.









So, watching them head off together for a day or afternoon of skiing wanting so badly to be with them is wearing. I find my depression returns with a vengeance, and I can't seem to swim out of it's intense, stubborn grip.There are many days when I feel that I could easily be swallowed up by the pain and it would be easier for everyone.







Even still, I try to force a smile to greet their rosy scarlet cheeks and typically buoyant moods, feeling just a smidgen sympathetic if they are cold and tired. I don't want to feel like this, I am happy for them but truthfully, I am equally devastated missing another part  family activity. Inside, I cannot even begin to stop the torrent of tears that remind me that somewhere deep inside, I am still present and obviously not accepting of my fate.

My husband tried to bolster my spirits by enthusiastically saying as he often does,"LET'S DO SOMETHING THAT MOM CAN DO!" I know that this phase is meant with only good intentions but I truly hate it. I feel like everyone has to take a step down, with choices mainly being a board game, movie or pushing myself for a family walk. And because it was so incredibly beautiful outside, my husband pushed for a walk in minus 20 degree weather. To put it in perceptive, it was too cold to even take the dogs, and they are always my joy on the walk.We trudged along, heads down, feet and hands freezing, and because of the bitter cold, it was utterly dreadful.



For two days, I didn't allow my depression a voice, not wanting to put a damper on their fun. My family need to live fully and not feel they have to hold back their joy because of my chronic pain.  I know that my disability has forced my life into a small compact box that holds very few and unexpected surprises. It's interesting because I know that the activities that I mourn for in my life are not just for the pure joy of living but for the deep sadness I feel because my children never had that opportunity to know a very different active person. So I live on a precarious tettor-totter, days of accepting but having other intense moments of missing the chance to hold my daughter's hand while ice-skating, or treking through the snow on snow-shoes with my son. This was and is my personality,  I simply don't identify with this disabled, rather vacant woman who has had pain as her constant companion for over 17 years.

IT IS ONLY IN MY DREAMS THAT I CAN FULLY BE MYSELF WITH MY CHILDREN!

So, it was only a matter of time before the depression volcano blew and it happened when a wonderful, young lady who is staying with us was figuring a suitable time to go sledding with my daughter. Suddenly, I blurted out, "Well, I might be going with Malia this time!" There was silence around me as the complete impracticality of my words let themselves sink. My husband broke the silence, "I don't think....well, I don't think that is a good idea. You can't!"

I pressed the point strongly knowing inside that I was being unreasonable but sadly, I only accomplished in seeing my daughter's face break into pieces of sadness and pity because she too wants these experiences with her mom. We love each other fiercely, my children and I and they mourn every bit as I do, the way life has unfolded. Seeing Malia's expression made me even more stubborn and unrelenting but looking back at that day, I simply feel that not being able to go with her was  simply unbearable for me. I didn't mean to cause difficulty to my daughter or the young lady who was to go with her, My sadness and anger had simply imploded towards the ridiculous and futile notion that a mom with a fused and crippled spine could fly down a mountain on a sled, cherishing the frozen tears of laughter from her daughter mixed with her own.

 Of course, I didn't go sledding, and instead, I watched for a brief time from the kitchen window. I couldn't help but wince watching their often spectacular tumbles and knew in my heart that I could have been badly hurt, even paralyzed from a fall. Guilt from my bad behaviour steered me to writing but my arthritic hands could not cooperate. So, I sat and hugged my dogs and had a profound conversation with my fifteen year old son instead. Christian often doesn't participate in these family outings, he hates the bitter cold. However,I am starting to truly wonder if Christian has taken this role of often staying behind just to make sure that his Mom isn't alone. He has always been my protector, my deep thinking and feeling son whom I adore. I know that one of the reasons that Christian has suffered depression in his life is because of the very fact that he is unable to fix his mother. I know it is essential for me to find joy in my tiny box of life so Christian can find his own. We joke about the fact that we could easily live as hermits with our pack of dogs.


















Our COLLIE, MAESTRO is so crazy intelligent and entertaining, OLIVER AND SOLOMON (OUR MINIATURE LONG-HAIRED DACHSHUNDS) are our resident sweet-hearts and professional cuddlers, and the spirit and joy exhibited in our senior SHELTIE girl, KIESA is inspiring. I am so grateful for the incredible love of my dogs, their comfort is immeasurable!

Malia eventually comes home and I find myself genuinely happy for my little mini-me who has just lived life to the fullest for the both of us. I forgive my earlier unreasonable behavior and recognize that those moments are necessary to remind my kids how much I want to be there with them!  I am such a blessed mother to have these two children with such big and loving hearts.

The pain of winter just eased up a little; reading a great book by a crackling fire is indeed slice of heaven. I remind myself to sink heavily into this simple joy, and cuddling with my dogs patch up my broken heart.

I am truly happy and grateful that this moment will sustain me for a good long while!


Blessings,
L

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!
.
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!"

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