Slow Descent into Darkness

Well, you can probably tell from my title that this post probably won't be my most uplifting post. To be honest, I took a break from writing because I was hoping that even stopping that little bit of time sitting at the computer might help reduce my pain level but nothing has helped. Tonight has just been a very tough place for my churning thoughts as they became even darker and more reckless, I decided I better get up and write for my own sanity. Right now, I just want to rip open my back and reach inside and take everything out until I no longer feel anything but I since I can do that, I am writing from a rather tortured place tonight.


First of all, I have much to be grateful for but no matter how many times I tell myself that, I feel the darkness of depression pulling me down to a place that I never wanted to go back to. The chronic pain is more intense, so all encompassing that I can only retreat to my bedroom so my children do not have to feel burdened by my broken heart.


I was able to secure summer help before the summer started and I should be grateful but this young lady named "M" but despite being in her twenty-five just seems to need constant managing and lacks common sense. She is a very sweet individual but doesn't take initiative unless asked and performing household task and general cooking is simply not her cup of tea. If I just wanted a companion for my children, she would be perfect but I need much more than that. As a woman who wants to take care of her own family and home but her crippled spine decided otherwise, it isn't always easy to step aside especially even the person you hire doesn't seem to understand that you would rather be the one doing it!
When you have to share your space, your possessions, your dogs, your family- it is almost like a gift from God when you can find an individual who can make all our broken puzzle pieces fit. I have had some of the most incredible young ladies do just that and fit into our family seamlessly but eventually they have to leave and the pressure of finding another person who you can trust and who can stay and WHO WANTS TO STAY is very stressful.  I know that I am far from perfect but there are days that I feel heartbroken and  bitter when rather than feeling my caregiver sees herself as an extension of me, she is quite happy replacing me instead.  There have been so many days lately where I feel completely invisible as if the wind could wisp what is left of me away and no one would even notice.


But at the end of the day, "M" has a good heart and loves my kids and my dogs so that is part I must try to be grateful about.


Today was tough however as I had to watch my beautiful ten year old daughter walk around arm in arm all day with "M" and I so wanted to be happy about that but my eyes keep welling up with tears. Near the end of the day, Malia announced to me in a very excited voice, Tomorrow me and M are getting up early to go play tennis and then watch a special movie together. I knew that I should be happy for my daughter and I was to some degree. But honestly, the awful green monster of envy came storming out of my heart yelling to my mind and spirit...." YOU LOVE TENNIS, NO NO, that's now even sufficient, TENNIS WAS YOUR FAVOURITE SPORT,  YOU HAD A LAZER FORE-HAND AND WAITED AND PRAYED YOUR ENTIRE LIFE FOR ONE OF YOUR CHILDREN TO BE ABLE TO GO PLAY TENNIS TOGETHER.
Yes, it's true, tennis was never such a form of exercise for me, it was a form of pure absolute joy that was so much incredible fun and I loved running down every ball. I even played until I was 7 months pregnant.


Back to "M" and my daughter announcing they were getting up early to play, I tried to plaster a smile on my face but wished they had just made a comment like "Gee, we would love you to come along if you are feeling up to it....even if you could hit a ball or two," but they just glowed with their own happiness. So, Tomorrow morning, five hours from now, "M" will go out holding hands with my beautiful little girl, play with my prized purple tennis raquet and they will come home in great spirits and somehow I must put on a happy face for my daughter's sake.


 I sound horrible don't I?


I'm sure after writing this, I will receive ten comments about what a poor attitude I displayed and how I should be happy for my daughter to have someone to play with her etc....and I HAVE TRIED to be positive but for some reason, this was truly a low moment where I looked at life square on and didn't know if I could handle being left at home one more day. Recognizing that even the very few times that I play tennis for 10 minutes or so, I am in agony and can't run down a ball to save me life.


Tennis, golf, horse-back riding, walking, bicycling, walking our gorgeous dogs,all of these activities that I longed to do with my family or four but my spine has determined that I will stay home.




So at 4:30am , I got up to vent my feelings instead of taking a bottle of pills that would have made a permanent decision in my life and hurt too many people that I love. Would they ever forgive me knowing that I wasn't suffering anymore both with the physical and emotional pain anymore?


The last time I looked up the work chronic, it meant "ongoing, consistent, something that doesn't go away. It's rather ironic to me that I live with pain that "doesn't go away and has altered the course of my life," because it many ways, I have already "gone away." I identify far too often with the word "INVISIBLE!"




I never realized before this very second that the second greatest loss to me because of enduring my spinal nerve cord pain is who I am as I person now, at times, full of envy and resentment that no matter how hard I fight, I just can't be who I want to be. I must pray for greater fortitude in these moments where the light is simply too hard to see.




 Physical exercise doesn't just heal  your body, it also uplifts your soul and heart and without that physical joy, it is difficult to care how you look because frankly I don't really like the person in the mirror looking back at me very much anymore. It terrifies me to think that I might be gone for good and I have simply been left with this shell of a body through which I must now navigate my life.


I think I could be okay most of the time with a broken body but it is the constant, unwavering pain that makes me wonder how long I can persevere?


The sun is just now starting to rise above the mountains and the sight is truly inspirational and reminds me that perhaps tomorrow, I will find strength somewhere to continue as I can't bear the thought of leaving my beautiful family!


I thank my readers for an opportunity to indulge my feelings of despair on a truly tough night.

Letting the phone ring.

The past two years have been incredibly tough as what seemed the rapid acceleration of my chronic pain has left me with gaping emotional and spiritual scars. To look back, I could say I was in denial but worse than that- it was like having an out of body experience but instead of being joyous and seeing myself moving towards the light- I felt almost nothing but a tinge of sadness in watching myself literally disappear.

Chronic pain makes it very stressful to make any plans because you never know if you can keep your end of the bargain. You can only cancel so many invites before the phone ceases to ring and sadly, you kind of feel relieved. Answering the phone sometimes becomes a chore because when the person on the other end inevitably asks you "how you are?" you can tell the truth and now discuss a subject that makes you scream out loud or  you might choose to hesitantly reply "Not too bad." However, if the pain has you in the throes of its force and you receive an enthusiastic response, you must know find the energy to carry on the façade. THAT IS WHY I GENERALLY LET THE PHONE RING! My grandmother is typically my exception because with her, I don't need to wear any mask so it is truly a "hellish," day when I don't answer my special angel's phone call.




In my early years of experiencing daily pain, I would make every effort to go to events and activities for my kids despite the pain. For years, I ran a music studio and even when my pain began to betray me, I pushed myself to a point beyond breaking because I couldn't bare the thought of letting down my students or their families. It was ironic, sometimes I would be lecturing my student on their lack of practice (especially before an exam or performance) and inside, I would be weeping because I could no longer play the piano--such was the nerve pain in my arms and hands.


However, the pain has weakened me over the years and somehow missing one event or concert has stretched into missing several events etc. I remember one event in particular where my favourite and uplifting group "The Tenors," were performing and we had tickets. I was in a dark place with pain that night but I still took the time to carefully dress my handsome son, Christian and my beautiful girl, Malia. Oh my, they looked divine....anyways, off they went with my husband, all of us waving goodbye to each other, I felt relief to be home and yet so incredibly devastated. Worried that I would always be waving goodbye and worried that one day, they would forget to wave back. FORGOTTEN! AND in complete realization that Life had gone on without me!

MY PRECIOUS DOGS  STAYED GLUED to my side as if they sensed that their unconditional love was not only needed but NECCESSARY that particular night.  I knew God had sent them to me in my time of need and I was so grateful for their companionship that expected nothing from me in return but a rub behind their ears. Maestro, Kiesa, Oliver and Solomon's unconditional love never failed to make me feel present even if it was just a little piece of me. I think that detaching myself from my feelings is the only way that I won't completely break into pieces when I think about my "new reality."







 Both my children are gifted actors but I realize that I, their mother, had put on the biggest performance of my life just getting out of bed and carrying on is some sort of capacity during those difficult days. I was fortunate during these very bleak months to have just an hour or two of moments where I felt truly present. Chronic pain and depression now held the keys to my daily life and frankly, it was obvious they had set up house. The fog was so diminishing and hours turned into days and days into weeks until I started to truly think that "THIS" was my new norm! Looking at some of Christian and Malia's acting photos ignite a small fire inside me, I want to help them achieve their dreams and be present with them on set. I cannot give up completely!!











Becoming house-bound was my personal safety net and it took a lot for me to even want to venture out. Honestly, before chronic pain became my best friend, I never understood people who didn't leave their house. But now of course, I understand it differently as I now stand firmly in the shoes that I never wanted to wear. Personally, I don't think one ever sets out to alienate themselves from society by taking cover in their house but over time, it can make sense, it can make things easier. You don't have to pretend, you don't have to engage, you don't have to even truly "BE."


ANY TYPE OF PAIN CAN RENDER YOU HOUSEBOUND and SADLY, it's ironic that your safe haven becomes in the very same moment, your private prison cell.


So, next time, don't judge or forget to think about the person who for their own unique reasons choose to stay inside their house. Pray that one day, they will find the strength TO answer the phone, TO open the door and then,  TO take a step. It is very difficult  to be brave enough to face your inner voice that will sometimes rise and make you acknowledge your true loneliness.


I am blessed to be able to say that after being extremely housebound, I am slowly learning that not all of my plans must remain tightly locked in a drawer. Looking back at those lonely two years where I barely ventured out of my home, I am learning  new strategies for dealing with the pain that helps me find moments of joy outside my home. I know there are tough days ahead where I will choose to stay home but at the same time, I don't want chronic pain to hold the key that will decide if the door can remain open.


So take that first step, if need be, let someone take your hand. THEN, take a moment until that moment turns into a day and the days turn into weeks and LIVING becomes your new norm.
I, for one, will be cheering you on!
Be kind to yourself on days that you sink into darkness but tomorrow may be brighter, always know that there can be a better day!

The Fragile Lost Lamb

I lay quietly without moving and I steer my complete focus to the exquisite music playing through my headphones. I feel in a good space and try not to think about my once impressive pain threshold that sadly over the past year  has began to falter. As a mother, I fought to be strong especially in front of my children but after years of treatments that have included several facet injections, it has become increasingly difficult to put up a brave front. However, I have been practicing meditation faithfully every night to help cope with the pain and I felt relieved that the doctor had given me special permission to us my music as a way to cope with the procedure.


The doctor touches my shoulder gently indicating he is ready to start and stares intently at the x-ray machine preparing for the challenge ahead of him. We share a sigh because my extremely long fusion complicates things and it takes a very skilled hand to inserting these six needles into my two overworked, compressed disks to try to bring pain relief to my lower spine. The nurse sympathetically hands me the two squeezy balls to grasp onto as it is safer than holding someone's hand.


I close my eyes and let my mind find serenity on a white sand beach, with aqua blue water. It takes only a moment before the  soaring cello melody invites me into the warm water's edge. I flinch startled when I feel the first of the three freezing needles go deep in my back.  I had counted on the meditation to get me through this procedure so I feel a tinge of panic that my mind would abandon me so readily with so much more excruciating pain still yet to come. Determined, I run back into the ocean and I gasp with the next needle before taking a breath and diving underneath the crashing waves. For a moment, the serenity envelops me, the clarity of the water is remarkable and everything I see is utterly beautiful. Suddenly, the scream erupts as, the searing pain bursts from the very root of my nerve and I think that there is no way I can possibly bear it. I mutter an apology afterwards so used to not being troublesome. The nurse holds my leg done and reassures me that we are almost done. I strain to hear the music now over the hum of the x-ray machine but it is like trying to soothe a frantic toddler intent on getting their own way. There are no distractions, only the feel of the hard cold table when the last needle finds its place and in seconds my tiny pillow is soaked from the sudden rainstorm of tears.


The doctor touches my shoulder, he is genuinely compassionate when he says "I'm sorry" and it is his and the nurse's true kindness that proves the  my complete undoing. I start to sob uncontrollably, loudly and I can barely breathe. As the nurse walks me to my chair,  I don't care how many patients see my brokenness. I sit in the cubicle with my own Kleenex box and can barely dial my husband's work number. HEARING HIS VOICE, MY OWN IS LOST FOR A MOMENT AND EVEN THEN I COULD ONLY WHISPER, "PLEASE!! PLEAAASSSSE!!!!!


He answers panicked "What's wrong, were you in a car accident?" He is distraught and asks if there is someone who can talk for me. My crying only intensifies as I pass my phone to the nurse realizing  that my husband didn't remember I had injections today. He has so much work on his plate taking care of his entire family, he has forgotten.


 My tears flow incessantly, I THINK I AM HAVING A BREAKDOWN OF SOME SORT- and the depth of my vulnerability and sadness leaves me utterly transparent. I see the pity in everyone's eyes and instead of feeling embarrassed, I SOAK IT UP LIKE A FRAGILE LOST LAMB!!




 The nurse asks me if I am in extreme pain and I almost laugh through my tears, not at her....she is truly caring but it's the question that is difficult to answer. I try to focus on the small left bottom section of my back and it seems to be in less pain but my mid spine upwards through my neck is in agony. It strikes me funny, I have so much pain everywhere that I wonder WHAT AM I DOING?  just trying to fix a small piece of me. It's overwhelming as I still have four weeks ahead of me alternating left side L4, L5, S1 and right side L4, L5, S1, two times each side to determine if I am a candidate for another procedure that would burn part of this nerve.


AM I IN PAIN? The nurse asks again still patient and like a flash flood, I think of everything that I have been doing to co-exist with this pain  from wearing a pain patch, taking spinal meds, practising  mediation, physio exercises, holding a magic rock, using heat and ice, going for therapeutic (not relaxing) massages, spinal injections and of course I PRAY TO GOD but .....


"YES,"  I answer in a whisper  "But that tiny part of my back is a little better".  The nurse brightens quite a bit at my answer, after all, this tiny part of my back was the reason for my procedure today.  She brings me a pack of cookies and a juice and like a little girl, I take it gratefully and eat it. For the next hour while I wait for my husband to arrive, my tears fall continuously but finally silent and I wonder if they will ever stop.


Today, my physical, mental and emotional pain collided in a head-on crash and for a time, I thought there were no survivors. However, my resilient spirit crept out from the wreckage and found it's way home to the open arms of my children and my dogs. Their overwhelming love dried my tears and helped me walk through the door and reminded me in countless ways why I must never lose hope.

AN ALTERED STATE

My Mom, bless her heart, would give anything to be able to fix me. And for a long time, we both thought that fusing my spine at age 12 to treat my serious case of scoliosis would do just that. Of course, she understood more than me at that tender age, the hell I would face in that initial recovery but it was the recommended option at the time. Years ago, it was common to SHIELD kids from the truth so I really didn't have a true picture of what I would go through after the surgery. And perhaps, if I had known what was coming, I might have started running and never stopped.

The PAIN WAS SEARING, beyond anything I could have comprehended and my grandmother broke down in tears the day I asked her "WHY GOD HAD FORSAKEN ME?" I was incredibly grateful to have my grandparents there in the hospital during my recovery as we lived in different cities by this point. They actually had a very special trip to Hawaii planned when the news of my upcoming surgery was shared. Even though, it was to be their very first trip outside Canada, my grandparents didn't hesitate to cancel it and drive the 15 hours to be with me instead. Having your loved ones beside you in a dark time is the only thing that keeps you moving towards the light.

 

My mom  and grandmother would spend countless hours just holding my hand as I had to lie motionless on a Stryker frame while my back healed enough for a body cast. I remember staring straight at the floor between the fabric slats and waiting the four hours until the nurses came to administer my morphine shot and flip me the opposite direction. Since this was well before the time of I-EVERYTHING (ipods, iphones), there were no distractions and because of the pain and consideration to other patients, it was just the sound of the medical machines and constant announcements from the nurse's station. Here I was, an innocent kid who had never each touched a cigarette, now reduced to begging the nurses to give me my shot early and once in awhile out of compassion, they did. I honestly don't remember being told that I was on morphine and because of that, being naïve of drugs, was shocked at my body's violent response the day I had to go through withdrawal. The feeling that I must be dying is still clearly etched in my mind and still to this day,  I can't believe I was kept in the dark about what was happening.

So, twenty years later after living with a spine in an altered and unnatural state, the two remaining disks below my fusion were severely compressed. Eventually, even though, these two little disks had allowed me to have a full and active life. I understand now that they were simply too tired and worn out of doing the work of an entire spine for over twenty years.

 And just like a race-horse being released from the starting gate, the pain surged through my spine, ferocious and determined to ignite every nerve in my body to signal pain to my brain. My pain's surprise attack found me unprepared, defenseless, wearing not one piece of armour. I was devastated, this was not the life plan I had anticipated. I thought I had paid my dues regarding pain back when I was twelve.

 It would take time to gather strength and educate myself about the battle I was in because no matter how much I wished it away, the pain was here to stay. But don't count me out, THE WARRIOR INSIDE ME is willing to do anything to "LIVE WELL," DESPITE THE PAIN.

 THE RACE IS UNBEARABLE LONG AND DIFFICULT AT TIMES BUT I AM DETERMINED THAT WHEN WE-THE PAIN AND I- CROSS THE FINISH LINE, I WILL THE ONE IN FRONT,

EVEN IF IT'S JUST BY A NOSE.

THE CHEERING WILL BE DEAFENING!!

HOLDING ON TO DIGNITY

Everyone has heard the saying that there is always a "silver lining," in any difficult situation if you look hard enough. One of the gifts that has been given to me is living with far more clarity BECAUSE of my daily struggle with chronic pain. 

It may be a struggle or a windfall of some sort, either way- these events will clarify every relationship in your life. People seem to always reveal their true character and heart when faced with adversity, success and/or with money. People that win the lottery will often complain that they have loved ones, distant relatives, friends and even complete strangers that will  come out of the woodwork trying to become close enough to be gifted as well.

Certainly, I haven't found "extra friends," because of my constant pain but it has revealed who will still stand at my side with compassion. If you have a relationship with a loved one that is fractured, chances are that this new physical challenge will sadly widen the cracks. In most marriage vows, we say quite cheerfully "In sickness and in health," for better and for worse, " but it will soon become apparent how strong your relationship is when tested.

I often feel that I am in the midst of a storm with my partner, the skies are dark and the waves are immense but once in a while, we surface to take a breath and see the light before we are sucked under again. I can certainly empathize how difficult a journey it is to continue to walk along side your wife who now is very different because of her daily struggle with pain. And despite my obvious need for help, I would rather crawl than ask for help from someone who maybe doesn't want to be there.






So, we tread carefully on the path together and despite my body becoming more dependent....

 I can feel my spirit rise up REMINDING ME OF MY WORTH!! 

Losing my husband's shoulder as my "soft place to fall," would definitely crush my heart but Losing My Dignity would break it into a thousand pieces.

My Appointment with Dr. McDreamy

Today, I had an appointment with my chronic pain specialist. He definitely had the McDreamy thing going on- in fact, his hair was even longer and since he already walks everywhere incredibly fast, he reminds me of Hugh Grant in the movie "Music and Lyrics" a slightly neurotic rock star.

 I always drive to my once every three-four months appointment with a certain amount of trepidation as relatives always load me up with lots of questions to ask in my generally five minute appointment. Please don't get me wrong, he is a very nice and caring doctor but he is overworked and sees patient after patient in pain...it's difficult to be fully in the game with that type of schedule.

I wait for only twenty minutes and scan my small list of questions carefully thinking of how I can cover these off in the appointment. He suddenly appears and calls me in by name, something I definitely appreciate. We do the customary greeting and when he asks me how I am doing, I answer honestly that I have truly struggled in the past four months and that the level of pain and my new arthritis pain has rendered me quite depressed.

 I should mention that I am being treated for nerve pain caused by severe scoliosis that was diagnosed when I was twelve years old. I was fortunate enough at that time to have a stellar young surgeon who did a tremendous job of fusing my entire spine except for L4 and L5. It was the dreaded "S" curve that pulls all your spine and muscles one way at the top and the opposite way at the bottom- basically your spine is a mess. But this post is not meant for the details of that operation but rather what I face now-today.

So, after my rather bleak answer to my handsome doctor, I study his face to see if there is any reaction to what I have said but there is nothing, he is too busy looking at my chart. I know that he heard what I had said and that is must be truly difficult for him because to delve into the sadness involved having chronic pain could take hours so I actually understand why he needs to remain detached. We evaluate what medications I am currently taking (practically everything possible) and we agree that I need to go for my lower back injections (HORRAY, they hurt like hell but are necessary). "Hugh" ends the appointment with a beaming smile and says that we will re-access  in three months. I was wondering...."Yes," he frowns rather impatiently as we need to keep things moving. So, then I ask about one of my concerns over a potentially frightening side effects to one of my newer medications but am reassured that it won't affect me. Well, that's good news, I suppose and together, we walk off to his nurse where I watch him at the speed of light, write out a couple prescriptions for me before he says goodbye.

My movie star's nurse is quite the character herself, low-cut blouses and lots of jewelry and a superior attitude that rubs me the wrong way. She seems to pick up that I'm not too impressed by her and gives me a bad time about one of my prescriptions saying that "OH, SIGH," I have to type out this letter AGAIN because "OH SIGH," the prescription has lapsed so you might has well take a seat."
"Holy Mackerel, " I think silently to myself, it must be quite the letter because SHE was VERY PUT OUT. Ten slow minutes pass while I wonder if I can walk fast enough to my vehicle before a ticket and then suddenly the good fairy announces, "Your letter is finished," and proceeds to fold it three times before handing it too me. I felt like a chastised child, I didn't mean for the prescription to lapse... sometimes the appointments are so long in between that it can happen...how fortunate am I to have such a kind nurse to take her time to do this letter for me....OH WAIT, isn't that part of her job?  Imagine my surprise when later after arriving home, I  unfolded the precious letter to see ONE SENTENCE TYPED OUT, I actually laughed out loud.

I walk to my vehicle feeling the exact same way as I usually do after my appointments, a sense of sadness that despite the many medications, I still truly suffer. I hate putting all that stuff in my body and at the the end of the day, I still am just holding on.
BUT, in that same moment, I remember that I AM HOLDING ON so that is something, I guess.

Now, I get to phone my worried mom and grandmother to basically tell them nothing because so far my condition remains a challenge and there is no magic cure to fix a broken spine. I dread these calls because I know they want to heart more positive news but it just isn't the day for that. So, just before I make my first call, I take a long look at the beautiful blue sky and hope that a better treatment is on the horizon. Just like all the other people who are fighting a health challenge, we need to keep hopeful and be thankful to the doctors who continue to research better ways to treat all of us.

Think before you speak

I was incredibly thankful to have two really great days this past week...Christmas and Boxing Day. I think that it was my best Christmas Day in several years and that emotion carried me forward to Boxing day to the point that I actually agreed to go to a relative's house where they host a big party every year. My aunt and uncle are terrific people and I love them dearly but when I was thinking about if I was strong enough to spend several hours (as they live a long way out of the city) and attend their party as I haven't been for a few years- my mom actually made the comment "But, Lauria, you used to be so close to _ and _ and you really love them LIKE THIS HAD ANYTHING TO DO WITH GOING????

Sometimes, it is my mother who seems to not understand at all what I am going through or living with every day. I know that she is in quite a bit of denial how extensive this chronic pain has taken hold of my life but I wish she would think before she spoke - of course I know that she means well but her comments typically make me want to shut down even more.

So despite my mom's comments, I wore my favouite new green sweater and actually felt VERY HAPPY during the drive out to the Boxing Day party. I mean I hadn't felt this good in several months, I was flirting with my husband, etc. etc. so it was a huge thing for me. When we arrive, my kids and Blair go join most of the gang outside where they are ice-skating and I walk cheerfully  into the living room where a few people are seated and smiling say "hello."

 Before anyone could answer, this one gentleman (long term friend of my relatives) says in a dejected voice "Boy, you can sure tell that YOU are in a lot of pain, "and shakes his head sadly.

I was shocked and immediately felt like a  giant deflated balloon that just has been carelessly popped....my happiness flying into little pieces all over the room until you couldn't see a speck of joy left anymore. I wanted to scream at this man and say "Well, actually, I haven't felt so darn good in months and I look nice today... my hair is SUPER CUTE AND..... the PAIN IS NOT IN FRONT OF ME RIGHT NOW," but instead I sat down in their most comfortable chair and fought back tears for the next five long hours.

Going out and making idle conversation with many people I don't know or hardly know is just too much and when the pain reappeared in a vengeance a couple hours into the visit, I wasn't surprised and made room for it where I was sitting. God, I want to be so much more than just this STUPID PAIN, I think that its attempt to define who I am at all times is what has been the most difficult to bear.

So, just as a suggestion, when you first greet a person that you know suffers from pain, try to make your first comment a positive one because you really have no idea how much it took for this person to even join the crowd in the first place. Of course, it means a lot to have a person ask me how I'm doing but honestly, let's also discuss other things...anything but the pain.