Not the Life I Imagined

Why do I feel like less of a person to say that I now collect disability? I always want to add that I worked for over thirty years, owned my own music studio, was a well respected piano examiner but somehow sharing the info just makes me feel even smaller. This was never more evident until a recent conversation with my husband who was feeling overwhelmed by life and by my "health issues"as he often refers to them. To my sensitive ears, it sounds like a bad word.
Clearly, this particular night will remain one of my lowest days.....

Not being able to work full-time anymore hangs like a muddy grey cloud between us. Disability doesn't come close to the salary that I used to earn. I feel his resentment without any words between us – he won't even look at me. 

"It's not the life I imagined!" his words finally break the silence the icy tone so cold that you could almost feel the droplets of water freeze in the air . Instinctively, I cringe like a dog waiting to be chastised by its master, I feel frozen and worry if I move, I will shatter like broken glass. It is difficult to breathe, I wish I was thousands of miles away.

My husband has shared this sentiment over the years since my back disability erased much of my former life  and thrashed it until it was barely recognizable. The fact that I kept working for years being in horrific pain doesn't seem to make a difference.  It is not the life he imagined after all!!

And every time he gets exhausted and overwhelmed by life, he says these same words that never fail to make me feel small, inadequate, and devastated!

But, embers of anger flicker inside my soul, words form in my mind, "what fairytale did you think we were entitled to?" But sadly, I lack the courage to speak!

I stare at the man I have spent over 25 years with and wish for once he would just say it straight. "THIS IS NOT THE LIFE I IMAGINED," – the words seem to taunt me....

I am NOT THE WIFE HE IMAGINED?!

This Is NOT THE MARRIAGE HE IMAGINED?!

The weight of his resentment nearly drowns me. In fact if I was in an ocean, I would turn to swim into the deep inky-black waters and not back to the shore. I can truthfully say the pain of feeling like a burden equals the pain inside my body – they are finally merged as one.

I finally can speak and a torrent of questions come tumbling out....

Do you think your mom, when she was diagnosed with stage 4 ovarian cancer at 63,  thought that this was the life she imagined? 

That our friend who suddenly became a single parent because her husband deceived her by cheating on her and then walked out on his children, is this a life any of them imagined? 

My voice cracks with emotion and I think of countless other examples, but settle on my final question,

"Do you think that most people don't struggle at some point in their lives and face challenges that are unimaginable??!!

My voice is full of hurt but still I cautiously hold out the olive branch,

"Perhaps you don't mean it but you make me feel like you wish I wasn't even here?!

My breath is shaky but I am sure that this downward spiral can stop now, I am sure he will stop.

 But a long silence lingers, the emptiness full of answers...my feelings of worth tossed away like particles of debris in the ocean waves.

Intense shame towards him rises in my throat like bile truly shocked that he would let me think such a despairing thought- I am the mother of his children. It is the lowest point of my entire marriage.

"I AM STILL HERE,"I remind him softly voice but have to turn away to swallow my mouthful of tears. 

He remains silent so I finish speaking the words that hang in the air between us,

"BUT YOU MAKE ME WISH I WASN'T!"

He doesn't bother to contradict me, to correct a misunderstanding, a dreadful wrong-doing per say. His face remains locked in stony silence so I walk, bent over like a broken reed, up the stairs slowly to my own space to let my tears spill with dignity without his presence.

"I am still a person," I whisper to myself – "I am still here" my words seek to both encourage and console me.

I know my disability has made me even more sensitive but I know what has taken place will change me forever. "I am still a person of worth."

I look into my children's bedrooms to see their precious faces to remind me it is not my time to go. "I am still here."

I hear my grandmother's voice reminding me how strong I am and that I must never give up. My Mama, despite being 92 is still my rock of wisdom and faith.

 Retreating finally to my bedroom sanctuary, I lock the door and though I sob uncontrollably, I feel my tears give me strength.

"I AM STILL A PERSON," the pain flares and for once I welcome its intensity that confirms that

 "I AM STILL HERE," my crushing sobs make it difficult to breath.

I wait for my husband, convinced he will come bursting in the room to apologize and right his wrong.... BUT HE NEVER COMES.

My positive mantra and own inner strength start to pick up my shattered pieces of my self-esteem. Feelings of disappointment and anger towards my husband finally make the tears stop but not the sadness.

  I can't comprehend the person who is supposed to be my soft place to fall didn't care if I jumped.
I am overwhelmed with shame..FOR HIM! 

I pray for strength, it's true that it is not the life I imagined but I am still here!

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Note to readers: This conversation did take place exactly as described and although my husband apologized and tried to make amends the following day, I won't ever forget the injury of his words to my heart. I also encourage anyone who suffers from chronic pain to not allow even their loved ones to ever belittle or bully you. It is important that you are being cared for with compassion and recognize that you are "not your pain, nor the repercussions of facing life with a disability.

I pray that my husband and I never again take part in such a discussion.

After writing this post the night it happened, I recognized the harm I would do to both myself and my children if I stayed with a man who could be so verbally and emotionally cruel. I know that I will leave with my kids no matter how dependent I am, we will find a way! Even more frightening is if I had been in a very depressed state when made to feel so worthless, the possibility of suicide. Sadly, the thought of suicide does cross the mind of many people who suffer with chronic pain as they often feel like a burden and that their family would be better off without them. Please share with your doctor or someone if you are struggling with suicidal thoughts.

It took me a long time to acknowledge that I had been living in an abusive marriage, not where my husband put his hands on me but experiencing emotional and spiritual trauma. A physiologist had approached me a year before this particular incident asking me if I was safe and yet she knew that I was not being hit. She went on to explain that emotional trauma can leave deeper scars, but I was still living in denial and paralyzed to some degree from my depression. It took yet another incident like this one to finally wake me up. I confused my wedding vows with accepting a marriage that was not safe for me mentally, emotionally or spiritually. The depression was a catalyst for deeper pain being felt in my body and it was my intensity of my pain that was the CLEAR SIGN that things needed to change if I was to live and be healthy for myself and my children. 

 How do I teach my children what a beautiful and healthy marriage looks and feels like if I stay in a situation that is so unacceptable and incredibly sad. I thank God for giving me the strength to finally see with clear eyes what I need to do.

It is also important to recognize that many caregivers can burn out from carrying so much on their shoulders. Don't be ashamed of asking for extra support as it is tough to be on both sides of this fence. For years, I let my self-worth be tied to my physical limitations but I am finding my voice again much in part from writing this blog. Thank you to my readers who inspire my strength!

SHATTERED

 SHATTERED 

PAIN, a four letter word like so many others but when linked with the words chronic and severe, it changes ones life forever. When people ask you “How are you,” you try not to alarm them by saying “Well, actually I want to scream my head off and rip my body apart,” but instead you say “Well, I’m in a lot of pain today,” and it's difficult for them not to look uncomfortable. It's understandable really, either they don't relate or just don't know what to say.

IT happens to most everyone that we accidentally knock an expensive glass off the counter and despite a frantic attempt to catch it, it still crashes into pieces on the floor. A momentary chaos ensues while after moving children and pets out of the way, we gingerly pick up the sharp pieces knowing that even the tiniest shard could cut us. We are filled with disappointment to recognize that the glass- part of a special set-  has shattered beyond repair and is irreplaceable. It is frustrating, sad, and inconvenient just like the disability that came and blatantly stole my life leaving behind fragmented pieces to navigate my future. 

I lay in a terrible state of shock, broken tiny pieces of glass that. despite endless doctor's visits, will never be repaired. 
My neatly wrapped family of four has been irrevocably altered, they still have the illusion of being complete but if you look closely, you will see that they too are no longer whole. Severe chronic pain has come and roused havoc in every fibre of our lives and although the damage may not be not be the same, we all feel the impact of its force.

A pain-filled body breaks apart into several pieces: first the body itself as it mourns the activities that it used to do so effortlessly. The mind splinters slowly over years trying to find ways to cope with this unnatural state. The body and mind beg for sleep - so incredibly elusive- that can provide a much needed rest from the pain. 

The heart and spirit are the last to break, the spirit in denial as it fights to remain hopeful that there are better days ahead. The heart weeps a river of tears feeling the true depth of sadness both for the person in the crippled body but also for the loved ones who cannot find the words to console or make the situation better. Loneliness, depression,  and moments of utter despair are your new unwelcome companions that take the place of your former friends. 

For years, I carried on in a state of semi- existence and waited to get better. I never entertained the thought that I wouldn't so when I started to hear doctors predict a life of pain, both my mind and heart refused to accept it. 

 I had been a twelve year old child when I had my first major back surgery after being diagnosed with scoliosis, my spine was shaped like a S with two prominent curvatures measuring 65% and 60%. A gifted surgeon fused my entire spine (except L4, L5) as it was the only treatment option. After enduring the stryker frame for 14 days, and four months lying flat in a body cast, followed by two more months in a walking cast. I was in excruciating pain for the first two weeks after my surgery but actually handled the rest of my recovery with humour and a c'est la vie attitude. 

Once I was given the go-ahead - one year recovery from my orginal surgery date - I jumped back full throttle into an active lifestyle.  I thought my back issues were firmly entrenched in the past.

They never discussed things with children all those years ago so it was almost a shock to educate myself about what it meant to actually have a fused spine, a spine that no longer functioned correctly. Because my two curves could only be straightened to a certain degree, several of my muscles were pulled out of alignment and my two disks had taken on the job of living my life for twenty years before they finally quit the job. 

I had been on borrowed time without realizing it as I was uneducated about my operation and the lingering results. It took many years before I truly comprehended that the life of of intolerable pain that I had inherited.

So began my life on a revolving medical carousel seeing specialists, having Cat-scans, MRI's , special x-rays, physio, acupuncture etc. looking endlessly for that magic bullet that would give me back my life. Every bit of energy was used looking for a solution to the pain. Eventually, I was referred to a chronic pain specialist who I would see every 4-6 months and he tried botox injections and when that made things worse, he gave me more medications to manage my pain. He was a caring doctor who sent me for an array of other facet injections,  nerve oblations, but nothing gave me much, if any, relief. I felt like I was no longer living but simply, in a state of existence.

In my dreams, I was haunted by the memories of enjoying activities I once loved and upon waking, would sometimes have a panic attack because I was so distraught by the pain that awaited me. 
I felt a depth of sadness that is difficult to describe and I suffocated in everyone's pity. To be truthful, there were days that I lay motionless, drowning in my own pit of depression, gasping for air.

And yet, I was still a mother who would try to summon any bravery possible to spare my son and daughter the true depth of my anguish. But, often, in their loving, compassionate arms, I would sob uncontrollably. I remember quite vividly my then six year old daughter crying bitterly while shaking her fist at God  because he hadn't made her mommy better despite her prayers every night. For many years, my young children shouldered their mother's despair and I wish I could have spared them this burden. It was undoubtedly the lowest moment in my life.

I truly think that angels dressed as dogs -but their wings most apparent- lifted me from the bottom of the sea. My amazing dogs, I had two at the time, a beautiful black and white sheltie named Kiesa and  a collie named Maestro -who looked like Lassie were so loving and provided great companionship. In the past sixteen months, we have added two miniature dachshunds to our pack and they are the epitome of joy and life. 





Oliver and Solomon specialize in cuddling, and unconditionally loving their family.

These dogs are out of their minds crazy-joyful to see me every day despite my broken down appearance and don't care one iota about my lost abilities or career. In fact, they are quite delighted to have more time with their Mom and their unconditional love has slowly worked their magic. When I am left at home because the activity for my family is beyond my abilities, I am no longer alone. I have companionship, humour and love 24/7 thanks to my angels. I think it is of absolute necessity that a person living with chronic pain have a pet who bolsters their spirits. I read an article recently that most homeless people would rather give up a place to sleep for a night rather than giving up their dog. I fully understand their sentiment as I couldn't imagine going through this struggle without the love and companionship of my dogs.

This journey living with chronic pain is different for everyone but I believe that there has to be a mind shift in how you live with pain.
For me, all the years I spent expending my energy trying to be a semblance of my former self actually prevented me from living.
But much like layers of grief, I believe that it is a process that takes time learning to live better with chronic pain. It isn't always easy as there are moments that remind you of what you were like before but I try my best to channel my precious bit of energy towards things that give me a sense of self-worth.

I mean, how can a person fully live if you are full of anger and despair, your thoughts are of what used to be and not what could be possible. I think that much of the energy I expended in the first ten years living in pain was spent hoping to get better. I have now come to realize that that precious little bit of energy must be used for things that give me a sense of worth.

I wish I could wave magic fairy dust and say that the pain goes away and the struggle of this journey is over. But for me, the pain continues to push my limits. My lower disks are completely obliterated, bone on bone. My fused spine has been sitting atop this precarious foundation and over time, has been negated to a forty degree angle. I feel grateful that I finally found a surgeon who was able to explain to me why my pain had worsened. I have major surgeries ahead of me that carry a possibility of paralysis, but even the best case scenario will still not fix my entire spine. However, any improvement would be accepted with open, grateful arms.



My children made an art project four years ago where they glued tiny, coloured pieces of glass onto a plain white form. I was struck by its unique beauty and for a moment, I could see myself in that creation.

My former self - the glass- is now broken but yet, my shattered pieces have come together to make a new self that is still strong and beautiful. These tiny fragments have forged together to carry me forward to a life worth living and although it is not the same, perhaps I will cherish moments of joy even that much more.


It is human nature to never appreciate life quite the same way until you have lost something. So, for me, my shattered pieces have reminded me that it is my mind that will determine if I am too broken to be part of my family, not by body. It was definitely a period of grief and depression but out of the storm, a piercing light has penetrated the clouds and I can barely stand its brightness!

Such is the beauty of life when you are open to living it despite your circumstances. So, with a spirit of gratitude, I intend to do just that and feel giddy at all the adventures that lie in front of me.

ANGELS AMONG US

 This post is dedicated to my dearest angel, my Mama who turned 93 this past March 17th. She remains my rock, is extremely witty, bright, and beautiful. Mama still makes the best grilled cheese sandwiches, my favourite, and always wants me to take the best chair because of my back. It is probably our only disagreement...who carries the heaviest bag or the tea pot etc. because I THINK I SHOULD because of her age and SHE THINKS SHE SHOULD because of my back.

 Mama had at least four falls the past couple of years and never broke a bone and, in fact, only needed stitches once. It is obvious that my darling Mama has her own set of guardian angels that watch over her. I am just so very grateful that she remains one of my angels on this earth and is always a voice of wisdom to me and the epitome of grace! I was her very first grandchild and she had endless patience and love for me.....she still does!

Isn't she beautiful!

I love you Mama!

I truly believe that we all have angels that watch over us. When you suffer from severe chronic pain, there are moments that are overwhelming and I know for myself that the despair can just be too great. I honestly feel that if it wasn't for my special angels in my darkest times, I might not be here on this earth.

 I remember reading a detailed two page newspaper article that profiled this young man in his early twenties that has been fighting chronic pain for several years. The words that he spoke were "My Words" and I had never identified that strongly with someone quite that way. I couldn't read fast enough to find out what had helped him deal with his pain and felt a burst of hopeful adrenaline  reading about treatments I had not yet tried. Suddenly, I reached the last paragraph of his story and froze not wanting to comprehend or believe the words that jumped out from the page. This incredibly handsome, intelligent, articulate young man,  despite feeling hopeful after a recent radical brain surgery to treat his distressed nerve pain,  had killed himself.

He left behind his broken hearted parents who wanted to share his story and bring awareness to people living with chronic pain.  Immediately, I broke down sobbing, wanting to tell this young man NOT TO GIVE UP, that his words INSPIRED ME, that he was BRAVE and....that he still had SO much life ahead of him. But in that moment, I realized I was not only crying out to him but for the part of me  that wanted to join him and LEAVE THE PAIN BEHIND FOREVER!

 I would be lying if I said that I  never experienced these same dark thoughts- of course, I DON'T WANT TO LEAVE MY CHILDREN OR MY LOVED ONES but I am human after all and understand this young man's choice.

 I would like to think that his angels had beckoned him to heaven to be healed, to be free of suffering and THAT IT WAS A GLIMPSE OF LIGHT, NOT DARK THOUGHTS that led him to his choice that day.  No one has the right to judge, it was his journey and it had, in the end, simply become too much.

One of my angels who is determined to show me that I have plenty of light left to see despite my pain is my best friend who also happens to be my grandmother. She will be 91 this next month but her health is wonderful and her mind is sharper than mine. To say that my grandmother, Norma is my rock, my strength, my go-to- person no matter the time of day or night would just only hint of how much she means in my life. I can just be myself , completely vulnerable and on days when tears are my only form of communication, she has a way of consoling me like no one else. My "MAMA," as I affectionately call her has the most gentle soothing voice but can also show a tremendous amount of spunk when needed. After a recent visit with my pain specialist that didn't yield any new treatments,, she was obviously not impressed and shared more than a few disparaging remarks. She finally announced in an authoritative voice," I should send you to the MAYO CLINIC,  THEY should be able to come up with something." Her immense fortitude made me laugh out loud and although, I dismissed her idea of going to the Mayo Clinic perhaps too quickly, I certainly appreciated the gesture.

You would thing that at 90 years of age, that I would be the one helping my grandmother in her senior years. But it is the complete reverse as demonstrated on my visits to her immaculately tidy condo where she fusses about me like I am still her little girl. We have heated, yet friendly, arguments THAT I MUST USE her most comfortable chair, fancy heating pad (that I gave her) and let's just say that  it is a race to see who can serve the tea and cookies. If we have bags to carry up to her place, she is fiercely independent as she carries more than her fair share. My grandmother doesn't just SAY THE WORDS, "she loves me", SHE LIVES IT with every gesture and action. I couldn't ask for a better role model in my life.

My grandmother never lets me forget my worth and reminds me that IT IS NOT TIED  to my physical limitations. She reminds me of  a sweet little lamb in a lion's suit, her sweet voice can turn remarkably fierce if anyone has made hurtful remarks to me because of my disability.
From her, I draw immeasurable strength that helps me live life day by day, no matter how big the storm.

At the end of our daily conversations, my grandmother reminds me to have faith and to ask God to be with me. I hang up the phone already knowing that God has "my back" so to speak because he was so gracious to give me the best grandmother in the world.

Perhaps, if it hadn't been for my pain, I would not have know the extent of my courage or the power of a grandmother's love...either way, I am grateful for my special angel on earth- 

Mama, I love you with my entire heart!!

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