Living with Chronic Pain

I live with chronic pain. I have lived with pain since I was about 11 years old, when scoliosis began to warp and constrict my spine. I had my first spinal fusion surgery at age 16, and never imagined I would have any more issues with my back after that. No one knew, or let-alone could warn me that there would be problems in my future, there is still so little hard evidence about scoliosis or it's causes, so I don't blame the medical community, if anything they saved my life in 1988. Had I not had the first fusion my spine was on a direct course with my heart or lung; so the fusion was a reprieve and a gift. I do not regret having it done.

And yet the fallout is only really becoming quantifiable now in my 40's. Add to the scoliosis a host of other spinal diseases and conditions, among which is now a broken thoracic vertebrae and metal rod, and bones worn to the nub by friction by simply walking without knowing what was happening, and you find me here; sitting in my pyjamas at 11:30 am, tears rolling down my cheeks feeling utterly desolate.

Again.

This is what it is to live with chronic pain, and while I am tired and sore and weak, and want nothing more than to crawl into my bed and sleep for a few hours, I need to get some of these thoughts out into the open, to share what it is to live in pain, so that maybe I won't feel so damned isolated by it for a few minutes.

In addition to my spinal diseases I also have fibromyalgia, which is a mystery to many, a stigmatized condition in the medical community looked upon as a hoax by many, and by others still seen as a by-product of misfiring nerves. I am the typical fibro patient; with chronic fatigue syndrome as well as the mind numbing pain in my arms, legs, neck and shoulders. Nerve pain is hard to explain to someone who has never experienced it, as it isn't' quite like a fire, nor is it like ice. It's something of a mixture, radiating from heat to icy cold, causing your limbs to feel deadened by forty pounds of electrically charged meat.

The usual symptoms that accompany fibro are all par for the course in my daily life, the nausea, brain fog, dizzy spells. And while medication can help with the chronic pain of the nerves misfiring it is only a bandaid on a broken limb.

My pain has gotten so much worse in the last five years; until then it was something I had lived with as graciously as I could. I rarely complained about it, as I figured it was my burden and no body wanted to hear me whimpering about it. I also figured my weight was a catalyst, so it was "my fault" in essence for being overweight, and if I weren't so slovenly and lazy maybe I wouldn't hurt so much. I know that isn't the case, that my weight is the result of my physical issues and not the cause of them, and yet the stigma is there. You cannot go out in public as an overweight person using a cane or walker without seeing it in the eyes of strangers; the world we live in is conditioned to look down upon those who are overweight. This adds to my physical pain, and becomes a pain in my psyche. And that pain has no pill.

Anyone who lives with chronic pain knows how isolating it becomes; you begin to have pain, and you make accommodations in your life, and begin to pro-actively find solutions. You go from this specialist to that specialist and as weeks transform into months, and years, you become tired, and even at times angry and jaded as you realize no one really knows what is wrong with you, they just want to push whatever big pharmaceutical fix they are funded by. The isolation you begin to feel can be just as painful as the physical pain you live with, as you realize no one really understands how you feel, why you feel it, and the only people who truly give a crap about helping you feel better are the ones who watch you struggle every day; your friends and family.

I am blessed that my husband is so patient, and he himself has spinal issues and is on pain medication for chronic pain; he gets it. My daughter has scoliosis now too, and while it seems to be less progressive than mine, it causes me concern and worry; I do not want to hand this legacy of pain and introversion to her.

Pain has become the focal point of my life. The first thing I do when I wake up is take my pain meds. And the rest of the day is then planned in my mind around each impending dose for the day.

I had my second spinal surgery this past January, and had put all of my hope so naively in it. I just knew it would fix the problems I had been having, and life would get back to "normal" again. I was so wrong. Since January I have become more jaded, emotional and insecure about my physical condition. As with all people suffering chronic pain, I play the role of multiple-personality disorder patient; on good days I smile and laugh and even get up and run the broom over the floor, or wash a few dishes. On a bad day I sleep, and sleep some more, because the pain is just too much to be awake through. My house is in shambles, which makes me feel guilty, and my life as it were is spent in my apartment, accommodating pain on the couch or in my bed. On an extremely bad day, like today, as the tears run down my face I punish myself with the knowledge that I am  an inactive parent, unable to walk through the mall with my teenager, barely able to do anything beyond sit with her and talk. I am not much more than a burden to my husband, unable to spend the time on my personal appearance I once did; as it hurts to hold the hair dryer to my head, as my arms are so nerve damaged after the paralysis I experienced in my last surgery. I seldom wear clothing these days, as pyjamas are more comfortable and easier to put on. And if by some glorious set of events I am able to leave the house for a short while, I have a big pillow to sit upon in the car, and my walker is ready to travel, yet it is so difficult to endure the confinement of the car for long, so I generally try to avoid it now.

And that is what chronic pain is really about; the slow and steady descent towards avoidance.

You learn over the months and years what your triggers are, what the consequences are for running the vacuum, or cleaning the bathtub; you realize just how much it takes out of you to sit in the park on a metal bench or try to walk the dog down the sidewalk. So you just start to avoid those things which cause your pain to flare worse; its easier to avoid, and deal with the regular pain. Regular pain is enough. I can wake up feeling as though I went 8 rounds with Holyfield, imagine how I feel after doing something other than sleeping? And don't get me started on sleep - my love/hate relationship with sleep is epic, and I can go for days without sleep because the pain is so acute, and then pass out for 18 hours straight.

I wish the world were more understanding of those of us who are in pain. It's often an invisible disability for many, and the scrutiny of family and friends who don't get it can be crippling emotionally. Mind over matter only applies to my emotional state of being, not my pain - as much as I've tried to meditate and smile and positive think the pain away it just won't abate. And while I am fairly good at staying upbeat and happy, I am human, and I am finding it harder and harder to maintain grace for any period of time these days.

Pain is slowly syphoning my strength from me, and I have these bizarre moments of panic where I worry that I will become an empty shell of a person.

One of the worst things about living with constant pain is how the people who care about you treat you sometimes. The last thing I want is to see pity in your eyes, and yet so often I see it from the very people who know me the best, and that is so hard for me to handle. I don't want anyone to feel sorry for me, I just want to be understood. I need the world to accept me as I am now, and know that I am terrified that I will never know what it is like to not feel this way again. I am 15 days away from my next spinal surgery, and this ones going to be a doozy; and I am horrified, petrified, and absolutely downright scared out of my mind. The last time I woke up in the recovery room just a few months ago I couldn't feel or move my arms. I worry this will happen again, and the probability is pretty high. I worry about recovery, coming home, letting my daughter and husband down. I worry that my diseased spine is just so compromised at this time in my life that no amount of shoring it up with metal rods will help. I worry that I will eventually end up in a wheel chair.

Most of all - like everyone living with chronic pain - I worry that the best days of my life are done and over.

On a good day I'll smile, and tell you I'm ok. And I won't bother you with the details of how I can feel the break in my spine with each inhalation of breath, and how it feels like someone wearing an iron glove is squeezing my spine for all it's worth. I won't bore you with the details of nerve pain, and how my arms and legs feel as though they have electricity running through them that jolts at each move. I won't even bother talking about my lower spine, or my hips, or sacroiliac joints. On a good day i shove all of that deep inside of me and try to smile, and accommodate, and be pleasant and kind and patient. And the reason I do that is because I know I'll soon have another bad day, and on these bad days, I fear I will end up alienating anyone who still has any amount of compassion for me, because I just can't bother playing politics and end up blurting out things in a less than tactful manner; pain has robbed me of my ability to pretend at politeness.

On a bad day I will have a very hard time not letting the tears slide down my cheeks as my body rebels against every motion I make, and my hips grind and my neck stoops and I cannot lift my head to look up for the pain in my shoulders and arms. And on the next bad day I can't guarantee I won't feel depressed and likely to hole up in my bedroom crying all day, because i just feel so damned all alone and afraid.

I'm 41 years old, with the spine of a woman in her 70s or 80s. I do my best, but that isn't that great anymore, and if this next surgery doesn't help I don't know what that means for me or my future. But I'm afraid, and I feel alone and embarrassed. And I just needed to let this out, because I know I'm not the only person on earth living like this, and maybe just writing this will help me to feel free from it to some degree today.

Until the next bad day.

If you're still reading, thank you for sticking it out. I'm sure it hasn't been pleasant. Try not to judge me too harshly, you really would need to walk a mile in my shoes to know what my life is like. And I honestly wouldn't wish that on anybody.

The New Age Cliché

I am sick to death of the new age movement. Anyone who knows me well knows this has been brewing within me for a few years now. I began to see the whole movement as hypocritical a few years ago, in the mirror - personally. I saw my own actions, practices and beliefs and realized that the new age movement has become just another dogmatic offshoot of projectionary pissing contests.

So I quit.

And now I rather make it my mission to be the devils advocate with new age zombies. And yes, I do believe many new agers are zombified; living in a misty perception of life based on too many new age books and tenets. I read all the channellings, I went to the seminars, I attended the global healing sessions, and for a long time it worked for me. Until I began to see the shift within the movement, and the greed people exhibited, as they realized they could not only cash in on this movement, but also justify it because of "free will" and "destiny".

I've witnessed new age people of all ranks use, abuse, and treat people horrendously, and turn around and justify it to themselves because they believe they were meant to play that abominable role in someone elses life in order to be Angelic - do them a favour.

I call bullshit on the whole thing.

An acquaintance of mine is a new age hypnotist, who makes his living coaching athletes spiritually to help them improve their games. This guy subscribes to the new age notion that he is "ascending" in order to reach a higher dimensional state of consciousness. He believes that everything is pre-destined, and he is playing a role as an Angelic being to help the world wake up, and become more spiritual. And yet, he turned around and caused a close friend of mine unspeakable pain, by lying to her and her children, about something extremely intimate. He lied, and got caught, and then acted even more cravenly by trying to pull the "let us learn from this" routine, instead of just saying "yes I'm an ass".

I am so tired of this type of new age disconnect, where people escape reality by living in some fantasy world, where they can make the rules up as they go to better serve their own duplicitous ulterior motives.

So again, I call bullshit on the whole thing.

Lets say for argument sake that the whole Ascension thing is happening; you really are an Angelic being in a physical body come here to help raise the planets vibration so humanity can evolve to 5th dimensional beings of light and Love. Let's assume that's correct thinking for arguments sake. So here you are, living in a world which is in utter chaos, where children go hungry every minute of the day, where women are raped every minute of every day. We are here in this world full of pain, tyranny, and heartache, wars being waged for money and natural resources, and as members of this new age movement of Ascension, we are here to help raise the vibration of the planet up so we can overcome, and become compassionate loving beings of spiritual light.

What are we doing to be a part of this shift? Hanging out in yoga studios, playing with singing bowls, going to Sedona to "feel the vibration" of the desert? It's become a cliché, and where the new age movement was truly a movement twenty years ago, now it is just another industry. It is a cash grab.

Now lets say that the whole Ascension thing is bullshit, man made, created in our psyche to help us overcome the fear and loneliness of being sentient beings on a small rock in an infinite universe. Let's say that we are just creatures of insecurity who are always  seeking validation and love, and that we have created this movement in order to feel more self worth.

How arrogant of us to for a moment think we're so important?

I think the truth of any situation lies within the middle ground, the eye of the storm as it were. And in the middle of the new age movement is a truth I can ascribe to: keep it simple. Stupid.

The truth can either be some grand dreamlike fantasy land which makes you feel all warm and fuzzy within your heart and pineal gland, or it can be what you see and feel and sense right around and within you. I no longer believe or care about the notion that hundreds of thousands of human beings truly believe they are on a mission of epic stellar proportions to help this planet evolve and ascend. What I care about is the lies we tell ourselves, and how we deal with people on a daily basis in our every day life.

Maybe it's time to stop reading the channellings folks, to stop going to the seminars, and ordering the newest new age fad on-line, to add to our pretty altar so we can tell people just how spiritually advanced we are. Maybe it's time to just go outside, sit under a tree, and re-connect to the Spirit within and around.

I challenge any self-professed new ager to put down the labels, and stop wearing the movement like a cool leather jacket, and get back to your roots.

Our roots; the roots and foundation of the new age movement was not about ascending to 5D reality, or going on some trippy astral journey; the roots were simply about love. Sharing love, giving love, receiving love.

Forgiveness, humility, flexibility, and compassion. These are the tenets of the original movement of the new age of Aquarius.

There is no need to complicate this process; in fact simplicity is the pathway to true peace. So simplify your spiritual experience. Stop looking outside of yourself for the "answers". Stop looking for mystery and significance in every shadow or shooting star. Just accept that we do not have all the answers and that in itself is a humbling beautiful component of our life on Earth. We are a part of a living organism which is interconnected by the trees, water, oxygen, plant and animal life. We have so much beauty around us right here on this planet; there is no need to want to escape to some higher dimensional version of Earth.

Heaven on Earth is possible if we take our collective heads out of our collective asses and start being the change we wish to see in the world - right now. Right here.

So take that 30 bucks you were going to spend on the next new age book and donate it to the Red cross, or to an orphanage in Africa, or to your local soup kitchen. You'll be doing something practical and immediate to be the change, and you'll feel so good about yourself after. And isn't that what we want? To feel good?

Call bullshit on the things which don't ring true around you, and then find something you're passionate about, and pursue it actively.

Instead of being part of the cliche, be the change.

It's far more rewarding.

Ending a Toxic Relationship

Paulo Coehlo said "If you're brave enough to say goodbye, life will reward you with a new hello."

If this is true, I now patiently await a new hello in my life. I have finally done it my dear friends; I've severed ties with my adoptive mother.

Anyone who knows me knows this is a long time coming, and a very painful path has led me here. For those of you who are new to my blog, please understand that while I love my mother so deeply, I can no longer have her in my life; at all.

Her role in my life was immense when I was younger, as she played the role first of "perfect mother", then the role of alcoholic and emotionally abusive mother. And over the years she slowly transformed into a person who caused me far more pain than any other emotion. She has neglected her grand daughter, my beautiful miracle child who is now 13. While we have lived no more than 15 minutes away from her in the last seven years since my father passed away, my mother has only seen her grand daughter a handful of times. And five years ago she walked out of our lives completely for three years.

It was only due to the death of a family member that I had to have contact with my mother again. And the door opened again, and as always, I entered with wide eyed optimism and rose colored glasses. Promises broken, again and again. Insults hurtled again and again. And yet more pain, so much pain. So much unbelievable pain.

Three months ago I had my second (and yet not final) spinal revision surgery, my mother did not come visit me, nor did she bother to call me, until I texted her to let her know I had come through surgery, and was finally feeling better after the paralysis in my arms faded.

Two months ago I turned 41. My mother, who lives 15 minutes away text messaged me a birthday greeting.

Today I heard from her again, first time since my birthday, another text message, saying how much she loves me and thinks of me. And it finally hit me.

I have been so desperate for her acceptance that I've utterly altered myself for her in every way. She doesn't even know who I am, because I am so careful to be the "best" version of myself I can be in her presence, but even that is never enough.

I was honest with her. And she responded bitterly, and I believe she was drinking. Not a huge surprise.

I cannot change her. And I will not try to change myself for her, any more. In the end, I closed the door. And I feel at peace. I wish her nothing but blessings, and hope she will learn how to treat herself better. She has alienated anyone who ever loved her. She has become so bitter and isolated and delusional. And I ache for the choices she's made that have led her to this sad place in her life. And yet, I also have choices I can make for my life, for my daughter. And today I chose to stop feeling like less than...

I pray that I do not repeat her mistakes as a mother. I can only hope to learn from her errors, so that the cycle of abuse and chaos ends with my own experience as a daughter. My own childs experience isn't perfect certainly, as her own mother is overly sensitive, "flakey" and spiritually off on her own cloud (tongue in cheek, smiling), and yet her mother listens, and talks patiently, and hugs, and loves, and understands. And barring understanding - I try to. And that right there makes all the difference.

I do not use my words as weapons, nor do I wield guilt as a tool of destruction and sadism. Pray Goddess, the great Mother of All - let me reflect the image of the mother I always yearned for, and the parent all children deserve.

I love her always, and yet now I am ready for my next hello.

My Experience With Death

You hear stories of people having near death experiences, or NDE's, while undergoing major surgeries, and these stories are generally always so positive, poignant, and full of emotional wonder and awe. I have heard these stories and my eyes have filled with tears as I felt the beauty each person described; the white light, the angelic music, the shimmering shapes of loved ones waiting to guide one Home to the great beyond. My own mother had an NDE at age 8 when she drowned in a community swimming pool. She described a dark tunnel whisking her formlessly towards a brilliant white light, with a host of angelic singing that would move anyone to tears, and then that beautiful light moving further away as she was resuscitated. Her story stuck with me always, and even as I read the books by Dr. Michael Newton PhD, called Journey of Souls and Destiny of Souls, I always felt that the moments after death would be beautiful and inspiring.

My own personal NDE is not as beautiful. I did not actually die, however I assure you the reality of death was no less stark. I lay in hospital five weeks ago on a dose of pain medication so high it caused severe hallucinations, and my arms were paralyzed; I was in and out of reality and the first two days were confusing, painful and frightening. I lucidly recall floating between realms, in a haze of drugs and discomfort, and at one horrifying moment I just knew in my very cells I was about to die. I heard confusing voices around me, and I was trapped in a prison of pain I could not describe verbally as I could not make my mouth form words. I was seeing horrifying visions due to hallucination and I just keep thinking "Oh my god I am dying, and it is the worst experiencing Ive ever had - why won't it just happen? Please make it fast! This is awful!"

Death did not come. But the result of this experiencing was no less profound upon me. I came "back" from that experience changed, forever, and deeply.

I see so clearly now; more clearly than I have ever seen before. I know what is important, what is "real" as opposed to what is illusion, and I am in constant communion with this knowledge.

Let me share a few inarticulate thoughts, in the hopes of spreading a wave of Love that will ripple throughout the www and into the world of form and format itself.

• Life is fragile and phantasmic and it does not have any guarantees - LIVE IT. Every moment.
• You are a beautiful and formless lump of clay which lays ready to be shaped and molded - YOU are the ARTIST.
• If you are displeased by any part of your self, your life, your experience - CHANGE IT.
• Do not wait for God to grant you miracles - create them NOW.
• You are surrounded by infinite potential in the form of fluid energy which is the very LOVE energy of God/Creation/Universe -- it is within you - without you - around you - and IS you.
• The past is to be learned from and LET GO OF.
• The future is limitless but is being shaped by your fears as strongly as by your hopes - choose to pay heed to your hopes and to learn from your fears and LET THEM GO.
• LOVE is the only TRUTH - everything that does not resonate with love is man made and therefore FALSE.
• Every moment can be a miraculous revelation of peace and love - the only thing standing between you and the love and peace of God is your THOUGHTS.
• THOUGHTS are programs running in the computer of your brain - what you DO WITH THEM is up to you - the PROGRAMMER.
• Angels are human, and walking among us.
• Gratitude must be verbalized and exercised.

• LOVE LOVE LOVE.

Please love yourself, dearly and deeply. See yourself as more than the sum parts of your experiences in life, and know that you are a work in progress, and that anything that makes you uncomfortable about yourself is completely editable.

If you cannot love yourself then there is truly NO MEANING to life.

Start with self love - when you can feel that - and let the love of the Universe flow through you - then love is limitless and loving others is effortless. And that is truly the most rewarding way to live ones life - in LOVE with all others.

This does not mean we will not have strife or struggle, or that we will not fall into the pit of 3D polarity - life is a pendulum and nothing is static - and yet when we fall into 3D we can exercise the beautiful option of regaining equilibrium and REMEMBERING LOVE.

Love is all there is. Anything else is a byproduct of the mind. And the mind should not run the program - the programmer must be in charge.

Own your thoughts.

Love Love Love,

Discovering TRUE Strength

It has been some time since my last blog entry; I knew it would be a while until I would discover the strength to sit at the laptop and type; today is that day.

As my friends and readers know, I had long awaited and overdue spinal revision/re-constructive surgery on January 22nd. I have posted previously about my spinal diseases, and the issues they have caused me in the last decade. I waited over five years for surgery and finally, it is over!

I will share with you some of my experiences of the last month, and my own perceptions and epiphanies, in the hopes of documenting one woman's journey towards loving herself on a deeper level. I hope to inspire, at best, and to share a few smiles along the way.

Let me start in the operating room, as I lay on the cold hard table as the OR staff flitted around me, taking levels, preparing the IV for sedation. I did what I always do in operating rooms; I made jokes, I got to know the OR staff, and I worked to put everyone at ease with me.

For me, it is of utmost importance that anyone operating on me knows me as a person, not just a patient. I needed them to know I'm a humorous woman, with deep empathy, a daughter and husband. And we shared some laughs as the machines began to ping, and I felt at ease as the oxygen mask was placed upon my face. I was there, one moment, and then I was gone.

When I woke up in the recovery room my initial feeling was relief as I thought "thank God, that part is over" and then, horror hit.

"Oh god I can't move my arms!" I thought to myself.

I tried again and tears began to trickle down my cheeks, impeded by the oxygen mask, and I opened my mouth to speak but only grunts came out; my throat so sore from the oxygen tube which had been down my throat only minutes previous. "What if I can never hug my husband again... what if I can never hold my daughter?" I was sobbing now.

I locked eyes with a nurse and grunted loudly and she rushed to my side, "Mrs Bernstein why are you crying?" she asked urgently and very loudly. A few other bodies rushed to my bed and the next moments were chaos as people began asking me questions and all I could do was grunt "arms - can't move - ARMS - can't!"

The coming minutes or hours are foggy to me, as doctors and interns and nurses huddled around me, people poked and prodded me with several sharp instruments. I sobbed as I was asked "can you feel this?" and I did not. I would get jabbed in my shoulder and feel it, then feel nothing as people asked again and again "do you feel that??"

I don't know how long it was until one of the surgical staff was at my side explaining what had gone wrong; my Brachial Plexus nerve had been damaged during surgery. What the hell was a Brachial Plexus nerve for crying out loud? I couldn't think straight. He told me with no amount of doubt on his face that it was temporary and my arms WOULD return to normal. I tried to take that bit of information and hold on to it. My surgeon showed up and reiterated this to me, and I trust him so implicitly that peace began to wash over me. 

I knew that though it was frightening, it was temporary. And that was my salvation for the next few days. 

My few days spent in the Neuro-Critical Care Unit are a blur; I was on far too high a dose of pain pump Dilaudid and I spent most of my time there hallucinating and sleeping. What I do remember is trying to make others smile, and succeeding much of the time. My pain team, a good looking group of four hospital staff members would come see me often, to find out if I was comfortable, how my arms were doing, if the pain was controlled. Before I was given the pain pump they were confounded as to how i would regulate my own pain meds if my arms were not working. I told them "Put the pump between my toes, and I will use my feet. I have monkey toes, trust me it will work!" they laughed at me. And they doubted it, but I created a precedent at Toronto Western Hospital, being the first ever patient to use my feet to regulate my pain pump. Impressed the pain team, and shared a lot of laughs in the process.

I realized in that time that laughter really IS the best medicine. 

There were dark moments in those first days, mostly having to do with one particular nurse in the NCCU who was cruel, and truly not in the right field; she'd be far better suited to work in collections, or a prison... however, for the most part I connected to my nurses, and called them by name, and created heart felt connections with them.

Three days later I was moved up to the Fell-A ward on the fifth floor, progress was being made. I had requested to be taken off the pain pump, as the hallucinations were more than I could bear. I knew the dose was dangerously high and I was tired of hovering between dimensions. At one point during a heightened hallucination I was absolutely certain I was dying, and it was such a negative experience that I stopped using the pump altogether. I told my pain team to remove it, I did not want it. They respected my request and did so. So when I was put on the fifth floor I became reliant on the nursing staff to bring me my medications at regular intervals. 

During the day my experiences on the fifth floor were wonderful. I had such beautiful nurses, women like Rita, and Kaye, and Claudette were just so sweet and gentle and nurturing. But at night things changed at T.O. Western, and it was like being transported into a prison hospital; the personal degradations I experienced were horrifying, humiliating, and among the deepest betrayals I have ever experienced. Laying in ones own urine for nearly an hour, because no one will answer the nurse call is humiliating. Messing ones bed and laying upon it for nearly an hour is even more humiliating. After a week of nightly humiliating and atrocity one of the PSW's, a hilarious and gorgeous man named Rene (who preferred I call him Mr. Right lol) told me he was getting the Nurse Manager. I asked him not to, as I did not want things to get even worse at night, but he was livid at the treatment I had received. So a very kind woman came to see me, who's name I do not recall. She listened intently as I described to her how I would hit the call button every five minutes, first stating I needed help to the bathroom, and how each five minutes I would more urgently plead for assistance to the commode, and how eventually every five minutes I would state "I have wet my bed please come help me"... she was mortified, to say the least. I told her that many nights I would go for four or five hours between instant release pain meds, when I was on a two hour schedule. I explained how I had had an accident while getting myself to the bathroom one night, because no one would help me, and that when a PSW finally came to my room I asked her to please wipe the urine off my legs, and she said it wasn't her job, a PSW would clean me up in 5-6 hours.

After that talk with the nurse manager, I no longer suffered any more humiliation.

Let me please clarify here now, that aside from these night time shift issues, my experiences on Fell-A fifth floor were positive.

My final three days at T.O. Western were glorious, as my day shift nurse was a young man named Logan, who I instantly took a shine to. My night nurse was Claudette, a woman less than a year from retirement, who I had a deep heart connection with. I called her humming bird, as she was always humming gospel music and hymns. And she called me Jay bird, as I spent my first week on the ward naked under my blankets, experiencing viscous hot flashes, and wriggling out of my gown every time they put one on me. She was preparing for a trip Guyana with her husband to visit family, and enjoyed Sudoku so I gave her a big book of puzzles for her trip. I hope to visit the fifth floor in April when I go see my surgeon for a follow up, and I do so hope to see Claudette again.

Logan was an angel; truly born to nurse. This incredible young man, only 28 years old, was so competent, caring, attentive and sweet. He never missed a dose, or skipped a beat. In my early days on the ward he was witness to some violent projectile vomiting on my behalf, due to the insanely high dose of my pain pump. Later he told me that in all his years of school and work he'd never seen anyone puke as forcefully or as far as me, if there were a medal... I'd have won it lol. We shared lots of giggles. And I made sure before I was discharged that he knew in no uncertain terms that I adored him, and hoped he would always keep his zeal, passion and bedside manner - he helped me heal tremendously in his three days assigned to me.

I was released into the care of Toronto Rehabilitation Institute where the real healing truly took place. I have nothing but positive things to say about the facility, the staff, and every single detail. I was admitted on a Monday morning, and discharged that Friday. I was among a very small number of people discharged in under a week; the healing that took place there was nothing short of miraculous.

All of the nurses were wonderful, but I fell in love with Kokila, and Veleda, and I literally broke down crying when I was leaving. I waited at the nurse station as they were paged, and i hugged them both so tightly and thanked them. And they both teared up as well and told me to see them on my next appointment date; March fifth I will go visit them after I see my pain doctor, and I will take them both a card. I love them both so deeply and dearly.

I learned so very much about myself during my nearly three weeks in hospital and rehab; the most powerful thing I have taken away from those weeks is that I am strong. I am so very compassionate and kind, and I kick ass. I worked my butt off trying to heal, to get up, to walk. I worked so hard at my physio therapy, and my thanks go out to Tish and Margaret, my physio team at TRI. They helped me kick ass, and they approved my early discharge, as they saw how hard I was working, and they knew how driven I was to get home to my daughter and husband and pets. 

I feel so very blessed. I have been home a week and a half, and tomorrow it will be one month since my surgery. I am in pain at every moment, but it is the pain of recovery now; no longer the pain of disease and degradation.  My lumbar spine has been reconstructed, and as the weeks pass into months I will regain my ability to walk without the need of a walker or cane, and I have goals I will reach. I have lost 49 pounds since December 14th, and I will keep working at that, as I wish to spend my next forty years in healthy vitality. I want my outsides to finally match my insides; I am strong, beautiful, and fortified. 

My pain doctor, a wonderful man named Dr. Flannery, is a friend and colleague of my surgeon, Dr. Stephen Lewis; and he has offered to take me on simply because he can - it's a huge blessing, as there is currently a 14 month wait time for pain management in the Greater Toronto Area. He knows my goals, and he is going to help me attain them. One of my goals is to take my daughter back to school shopping in August, in a big shopping mall, and to be able to walk all over the mall with her, without aid, and without pain. He believes it is possible. And so do I.

I am grateful for this entire experience, all of it, the lonely scary nights, the beautiful moments of connectivity with nurses and staff; it all reiterated to me that people are at the core good, and kind, and that more than this: I am strong.

I am so much stronger than I ever hoped to give myself credit for. 

And I am only just beginning to tap into the vast reaches of my own potential. 

And for this I am grateful. To myself. I can't wait to see what I will do next.

Worry & The Crown Chakra

As you may be well aware, the Crown Chakra is the energetic energy source connecting our body and spirit - located at the top of the head. There are several other energetic Chakras (the word Chakra is sanskrit for "wheel " or "turning") in the body; each of which connects to a major organ or gland; the Crown Chakra is the one at the upper most part of the physical body and it opens our awareness to all that is "above" us (energetically higher on a vibratory scale).

Now that I've gotten the brief explanation of the Crown Chakra out of the way, on to the gist. I have had panic disorder for nearly a decade now, and while the worst of it was in the first two years, I do still have moments of sheer panic from time to time. The big panic attacks are limited; it is the smaller anxiety which I am still plagued by. It is a daily exercise in letting go, living with the level of anxiety I do; I am always looking for deeper clues within myself as I know this anxiety is not the illness, but rather a symptom of something deeper.

When I go deeply within myself and ponder anxiety, and it's root - fear, I come away with a knowing that my fears all stem from feelings of abandonment, inadequacy, and self-doubt. While on the outside I may appear to be quite certain about myself, internally I am constantly judging myself; it is very emotionally exhausting and quite painful. And just because I am aware of it doesn't make it easier to break out of the patterns I've fallen into.

So what does my anxiety and the Crown Chakra have to do with each other? Well I've made so many observations about each Chakra over the years during my meditations and cleansings; I know that my fears are connected on an intimate level to my Crown. When I am in a deeply receptive state, breathing deeply and tuning into my biology and surroundings on a very profound level, I notice that the milisecond my mind slips into a fearful place I feel a pinching pressure on my Crown. When I feel this pinching my throat quickly begins to "choke up" or feel swollen; signifying that this is also relative to my Throat Chakra, and my ability to express myself, or be heard and understood.

So on a higher energetic level I am aware of the root of my fears, I understand where they originate within my own experience here on Earth (all from early childhood) and I can see how I've lived my life either in abject abandon of my fears (mostly as a young woman) or in compromising hesitation regarding my life experiences and choices.

Ok, so Dee, you understand where your fears come from, and you understand where they are hooked up on your energetic Chakra system; what's the problem? Just be done with it now!

If only it were so simple. We are creatures of habit and conditioning; and I've spent the better part of the last two decades unknowingly conditioning myself to feel unworthy, unloveable, and mistrusting of myself. I remember the first two decades of my life were spent in quite a large sense of confidence, and I always had an unspoken knowing that things would always be alright in my life, and I would always be provided for.

Ironically, it was around the time I began to explore world Religions and spirituality that I also began to experience the first inklings of self doubt and anxiety about myself. I'd had anxiety since childhood but it was always regarding the actions and behaviors of others; hardly ever about myself.

But now, by age 40, there is so much self-doubt that I find myself questioning everything I do and say, quietly having an ongoing commentary within myself, asking things like "was that stupid?" or "did I cause pain?" or "that was petty - you suck".

This is deeply ingrained within me, so much so that when I catch it happening it feels like a shock, each and every time; though I'm aware of the causes, the triggers, and the affect both physically and energetically, it doesn't make it easier to accept it. Each time I find myself judging myself, and open myself up energetically to the point where I can see it for what it is, it feels a bit like an epiphany; as though it is the first time I've discovered myself doing this. So in a way I feel a bit like an amnesiac, as I easily forget to watch for the signs, to moderate my inner commentary; and when I forget then it's back into the old patterns again.

I need to dedicate myself to this, and this alone now; I am so tired of beating the crap out of myself. I know rationally that I am not responsible for the feelings and perceptions of others, and yet there is this need within me to accommodate, to bend, to be pleasing and valid. When someone hurts me I automatically look to myself for the blame, having a hard time understanding that I may not have any blame at all; I generally assume it's my lack of endearing traits that leave a bullseye on my forehead. People just seem to have no trouble being coarse, abrupt, judgemental and cruel to me. So it must be something I emit... and in this way I think to the animal kingdom; stronger animals sense the weakness of their prey and know they are higher up on the food chain - they don't question that, it's simply instinctive knowing which drives them to overtake prey again and again. In this way, I am like prey, emitting a weak signal, so in essence wearing a bullseye on my forehead and heart.

I understand that any of my extremely positive attributes (and there are some) are overshadowed by my weakness, and subconsciously some people are wired up to feel superior to others and thereby treat them differently. I don't judge this; it's human nature. I just find it interesting how in the first twenty years of my life, even though I still had doubts and hangups (I grew up in a very painful environment) I was still confident and self-assured and just knew beyond knowing that I was connected to something "sacred" in the Universe, that always had my back.

Why I ever felt the need to explore anything beyond that, I'm not quite sure, I can't remember when or why I began to seek something "more". But it was a fall down a rabbit hole I can never recover from. My blissful ignorance was blown to hell as I explored world cultural religious modes, dogmas; as I really began to understand just how convoluted "faith" is when built upon guess work. And that is all world religions are - guesswork. I don't mean anyone any offence, and while I'm sure some of you will want to immediately pray for my soul, I assure you I'm quite alright as I am in this respect. Your prayers and blessings are always welcome but they are more for yourself, than they ever are for me. You see, a prayer is a plea to something greater within and without - a request for grace to handle adverse situations, for patience to handle things which test us, and strength to be as great as we hope to be. You can pray for my soul, but it's your own soul which drives the desire to do so.

We're all fearful and anxious about death and what comes next vs. nothing comes next. Faith is a wonderful place to reside, but when it isn't backed up by knowledge it's blind faith, and anyone who doesn't have practical working experience with death is guessing. My mom had a near death experience in her childhood and I don't question her experience, I know she experienced the tunnel of white light, the angelic choir, the being pulled upwards; what I question is how much of that experience was manufactured by her pineal gland.

I've gotten slightly off track, but this digression is good as it brings me back full circle now; when I used to think about death in my first 15 years, I knew God was in Heaven and I would join him when my body died eventually, because I was reborn through Christ.

Then, in my late teens and early twenties when I thought about death I thought the exact same thing, only more abstracted, with less linear lines so to speak; not as many rules, not as many dogmatic confines.

Then in my mid twenties and into my thirties thoughts of death elicited images of the Universe, and nebulae, and alternate dimensions; my view had expanded to a Universal level, and I just knew that the journey wouldn't end with my body, and that gave me tremendous peace. This peace could only exist if a fear had once taken it's place; so the peace I would feel was really indicative in my sometimes doubts in the ongoing nature of the soul, or our essence. I had faith, but not 100%.

Now, I'm 40, and I don't know quite honestly. And sometimes that eats at me, but not very often. You see, I made that my mission last year; to come to grips with my fear of death and "what next". And I have made a tremendous amount of insightful progress. I don't attach the same meanings to death that I used to; my exploration helped me to see things in a different light, and now when I think about death leading nowhere, I'm ok with that instead of instantly panicked. And when I think of death leading somewhere I'm ok with that too, because as far as I'm concerned I have no control over what happens to "me" when my body dies, so I have two choices: stress the $@%! out about it, or just breathe and exhale.

I exhale.

Now I'd like to exhale regarding my internal commentary of fear and self-doubt. I'm doing it all the time, cutting myself down, limiting my abilities, putting up boundaries and blocks because of fear and uncertainty. I want to move to a place of wider perspective on this, like I have regarding the thought of death. I want to know on a deeper level why it's pointless to run this internal commentary, because on a rational level I get how destructive it is, I know I'm poisoning my cellular body with negative ions. Even as I typed that last statement my Crown Chakra pinched and felt tight, and I realized I was feeling anxious and stressful about what I'm doing to my body.

Do you see?

Am I odd?

That is one thing I often wonder; do other people worry as much as I do? They don't seem to. Mostly.

So I'm going to make it my mission now, as of this day, to be mindful of my inner commentary, and to be paying attention to my internal responses, so that I can start to re-condition myself. I feel like the member of a cult who has escaped, who now needs to go through extension behavior modification in order to reclaim their own sense of identity.

Out of the numerous things I would like to work on within myself, this is the one which needs dealing with now. I am ready to stop worrying about worrying.

Thanks for hearing me out.

Depression & Spirituality

Some days it's hard to get out of bed, to get dressed and get on with the day; we're human and its only natural that we have 'bad days' from time to time. And yet it seems that even in our incredibly progressive state of mind on the whole it's still rather taboo to talk about depression, or bi-polar or other emotional/chemical instabilities. People generally don't want to talk about these things as they have negative stigmatic connotations attached to them, and I think it's about time we stop trying to "Grin and Bear it."

Depression is a vastly overused term, when honestly I think it's the human condition to feel "depressed" from time to time. We live in this 3D reality which is very vivid and at times overwhelming - our senses are constantly being bombarded by technology, media, sights smells and sounds. We each have our own daily tasks to grind through, and sometimes that grind can feel like yet further futile and inevitable steps towards mortality. How are we to make it in this world without feeling bummed out every now and then?

And if every now and then is more often than not, that's cool too. Seriously, I have had 'chemical imbalance' most of my life, and have been on and off different anti-depressants since my early teens. It doesn't mean I'm a negative person, or pessimistic; it doesn't even mean I cannot manage my moods, or create my own happiness. Depression isn't a by-product of a lack-luster life; it is a simple dip in neurological chemicals combined much of the time with things, people, or events which just make you feel like crying and eating a pint of Ben and Jerry's.

Everyone feels blue from time to time, whether it's emotional and you know what's bumming you out, or it's chemical and you don't know why you just feel so sad, you aren't an odd man out; the majority of human beings can relate to how you feel; some just won't admit to it.

Spirituality isn't about transcending sadness, and living a joyful happy life 100% of the time; if that's what you want out of Spirituality then you're doing it wrong :) Spirituality is about finding the balance between all polarity, and walking the middle path with wide awareness. And that will require more self-aware discipline than most humans have. I've seen some Spiritualists talk about negative feelings as though they're akin to evil, and how we must arduously beat back these negative feelings until we are victorious in mastering our ego! Pucky. I've also seen Spiritualists try to make extremely judgmental comments about people who are feeling sad or low, telling them that they are simply receiving from the Universe what they put out so they must be putting out nothing but garbage and sorrow. Also - PUCKY.

Sure, the Universe is a gigantic Xerox machine sending us copies of what we emit, if you buy that I have some swamp-land in Sedona to show you... This intimation by Neale Donald Walsch in the Conversations with God books is warm and fuzzy and it feels good when one's feeling good; but there are too many inconsistencies for it to be a properly operating aspect of Quantum Mechanics.

I'm sure we've all seen dozens upon dozens of examples of how the Law of Attraction seems ill equipped to sum up our reality; it sure scratches at the surface but it's missing out to some massive degrees: not everyone gets what they give. That is just a fact. If it wasn't a fact, we wouldn't have cliche's like "Only the good die young" and "good things come to those that wait" and "the meek shall inherit the Earth". No, it's pretty plain that while the Law of Attraction sure does have some relevancy in our lives in certain ways, it doesn't explain how greedy manipulative people thrive, and how honest hard-working humble people can suffer. And I know there are plenty of Spiritualists who would go on to suggest that this is because our souls decided to learn about these things before being born; I too ascribed to this whacked out state of mind for a long while. But I highly doubt any soul wants to learn about sexual abuse as a child. I can't imagine any spirit floating in the ethers thinking to themSelf "I'd like to better understand Love, so I will live a life full of hate and hardship and abuse. And these challenges will help me better understand Love."

*Pukes*

New Age Rhetoric is detrimental to your emotional health :) Are we really to believe that suffering is the best way to learn about peace? Sure, we do learn a lot via adversity, and I'm the first to point out the marvelous teaching techniques of all manners of life experience, but I cannot accept for a single second that we are expected to be violated, mistreated, abused, neglected or abandoned in order to be a more awake and aware sentient being. It's just ridiculous.

Sadness, sorrow and depression are just shades of the emotional palette; and we all paint vivid scenes in our emotional lives. Some people have a better handle on their emotions than others, and this doesn't make them better people, just better at coping with emotions.

I honestly think the longer something sits in the dark, unexposed, ignored and not talked about, the worse it will fester and ooze. So not talking about our sad days is damaging, as all it will do is create a little more sadness to add to the pile.

I can say with some certainty from my own experience that it is natural to feel sad, or lonely, or depressed at times. And if you cannot cope with your sadness then there is no harm in asking a doctor to prescribe you an appropriate medication to help with your chemical balances. These imbalances are the direct result of a society living off of processed foods, pollution, radiation and the myriad other toxicities we are bombarded by in our "advanced" civilization.

We live in an age of information overload; where we are desensitized by the media, and live amidst such atrocity on our planet yet turn a blind eye to it because it is just so rampant. And we're expected to smile serenely, knowing that the little starving children in Africa dying of AIDS wanted to experience this level of suffering for his soul to advance?!?

A truly honest spiritual seeker will see beyond the warm comfort of this particular set of new age notions, and know that breathing blissfully in ignorance of others suffering is NOT the path to Nirvana. True peace is unattainable in the human mind and body, but true moments of peace are abundant and swelling forth in each moment; more joy is derived from helping others than sitting atop ones spiritual pedestal feeling "perfect" in everyone else's imperfection. So all the new age sheeple can continue to ring their Tibetan Singing Bowls and talk about Prana while eating their Big Macs behind the comfortable anonymity of their computer monitor, and feel righteous and Ascendant knowing that their soul has made all the "right" choices. And when the "rapture" inevitably doesn't happen and they're left scratching their glowing heads in curiosity wondering why they didn't go up to Heaven for one-on-one back-pats by the Ascended Masters, they maybe will realize every moment spent in inactive acceptance of tyranny was a moment wasted in a life misdirected.

We all get sad, and we can all talk about that sadness honestly and openly without fear of judgement, because anyone who tells you they don't get sad, they feel joy and peace all the time, is full of sh*t. It isn't possible. Even Buddha himself must have experienced moments of sorrow, how else would he have had such great insights for transcending sorrow?

Do Christians think Jesus sat back on his Spiritual laurels and counted his blessings? That guy was apparently out healing the sick and feeding the hungry every day. He didn't have to, he was already the son of God, he was pretty much guaranteed a clutch spot in Heaven, don't you think? But he still went out of his way to do good things for others. If he wasn't driven by a glory seeking agenda, what do you think compelled him to act this way?

Perhaps it was a genuine and true love for people.

When we genuinely and truly love people, we can accept them, warts and all. Happy or sad, we're all so similar, sitting on this big rock spinning in the outer regions of space, trying to make some sense out of the unknown. Our society is confusing, our governments are corrupt, our finances are dwindling, our technology is over-taking our ability to understand it. And our children are hungry, and don't have warm boots, and have no one to tuck them in gently each night. Is it any wonder we're not all sad from time to time??

The thing I've learned through my own moments of sadness or depression, is that it will always pass eventually, and that I cannot escape my negative or painful thoughts. So I now greet them head on, and the first thing I ask myself when I am confronted by something painful within me is "is this rational?" Does it originate from something I can actually change? Or is it just the "blues". I wake up feeling blue from time to time, with no known reason, and rather than try to "cheer up", I just spend some quiet time with myself (whether I'm alone at home, or driving, or shopping, or working) letting the feelings follow whatever natural flow they will. And if it becomes overwhelming and I can't handle it any more I talk about it with my husband, or my friends. Bringing pain into the light of day and talking about it usually helps to alleviate it, by virtue of just getting it off your chest.

So the next time someone tells you to cheer up, or get over it, or let a smile be your umbrella, feel free to flip em middle-birdie and claim your right to feel how you feel. There's no shame in it. Sadness will always eventually give way to happiness. And then the cycle will reset. May as well be comfortable in your own skin while living between the tug-of-war polarities on Earth.

And failing that, medication isn't a bad option. It can often help to regulate chemical imbalances within a few months.

I'm Dee, and I'm a life-long occasionally depressed woman. And I'm okay telling you that, because I'm okay living with it.

Lucid Dreams & the "Delta Hum"

I remember one of the first times I experienced what I now call the "delta hum"; I was a young teenage girl laying in my bed at night and this sound began deep within my head, and it got 'louder' and more intense until I couldn't take it, and I shook my head and it dissipated. I thought nothing of it and forgot about it by the next morning.

This type of experience happened often in my teenage years, and I never told anyone about it, because I figured I was hearing things, and was "crazy". I was already quirky enough as it was, I didn't need my friends and family thinking I was even weirder than they thought. The hum stopped some time in my early twenties, and I all but forgot about it until it returned about 8 years ago. This time I was older, and somewhat wiser, and met the experience with curiosity rather than fear (though to be honest, it still did cause me anxiety to experience it).

Let me explain the hum a bit, and why I call it a delta hum. It's pretty hard to describe it, because I can't really compare it to anything else. Let's just say it's like having a pipe organ in the middle of your head, but all the keys pump out white noise instead of tones. The white noise is multi-tonic though, as there are different pitches and levels of sound. This pipe organ of white noise starts out so gradually and quietly that I'm not aware of it until it becomes "louder", and I use the word louder loosely because it isn't an auditory experience, I'm not really hearing the hum so much as feeling it and being aware of it in different ways. The hum is like someone has smashed down 20 different keys on the white noise pipe organ, and it gets louder and louder, until I can feel it vibrating within my head and eventually my body. I did a lot of digging and researching about 8 years ago when the hum returned, and began to understand that the only time the hum ever came upon me was when I was drowsing, and beginning to enter a delta sleep state - the state where you're crossing the boundary between conscious wakefulness and light sleep.

At that point in my life, eight years ago, I was meditating regularly on a daily basis, and once in a while I would find myself drifting off to sleep after a peaceful meditative experience, and one afternoon after an especially pleasant meditation I was drifting off, though still aware of my surroundings, and the sounds within my home. The hum began gradually and quietly and I thought to myself that this time I was going to 'go with it'. So I breathed deeply, relaxed further and just let the hum keep building.

It built up to the point that I thought my mind would go deaf (if that reference makes any sense to you then you're getting my point completely!) but I pushed the anxiety down and let the hum continue.

And then it happened!

I realized I was now asleep, but still consciously aware of my physical body and location. I focused on the hum and it lulled me into a dream and for the first time in my life I found myself in a lucid dream with the ability to direct it completely.

It was a beautiful experience and I began to realize that this hum was not physical at all; but rather was connected to the electro-magnetic energy within my body and brain. I believe some people are naturally able to lucid dream, as well as astral project, and as I continued to experiment with the delta hum I found that I could do both things, and that the hum was something like a gateway, or a nexus point for my travels.

To this day, when the hum comes upon me I let it guide me into a gentle state of awareness while sleeping. However, I don't experience the hum often at all any more, and I attribute this to the myriad pain killers I am on for my spinal diseases. These medications numb the mind and body, and the hum simply eludes me 99% of the time now.

I know that when I eventually have my surgery and am able to live an every day life without the need of narcotics I will be able to access the delta hum again, and as I get older I find more profound and intimate desires for my lucid dreams and out of body experiences. I am eager to communicate with various aspects of my Higher self as I have in previous experiences.

If you're interested in this type of spiritual experience, then perhaps you can see if you can tap into your own delta hum. It's very simple really, deep breathing exercises while laying in bed preparing to sleep can help you to relax enough to focus on your biology. Focus on your breathing, your lungs, your heart, and the blood flowing through your entire body, being pumped through your heart, pounding through your veins and arteries, and being transported into your brain. Become absorbed in the workings of your blood and oxygen, and then call upon the hum; it doesn't come from anywhere in particular, and in fact I now understand that this hum is always evident within our bodies. The hum is your energy, your frequency, the electricity within your body and brain, so all you're going to do is "listen" more intently for it. You may want to incorporate Chakra cleansing exercises into your breathing/meditation as this may help you to get into a delta receptive state.

If you're able to detect your hum you can expect a normal amount of anxiety at first, it's a new experience and it's rather bizarre, and it's quite natural to want to turn it off as quickly as you become aware of it. Don't feel dismay if you immediately shut the hum down the first few times you tap into it, it's okay to have this very human response. But if you stick with it, you may amaze yourself with how far you can take the experiment.

I'd love to hear the results of your own experiences with the delta hum, feel free to comment, email me or let me know via Twitter .

Here's wishing you lucid dreams and peaceful sleep!

Understanding Scoliosis

*as posted to another blog Sunday, March 25, 2012.

When I was 12 years old I had a physical to go to summer camp, and it was discovered that I have scoliosis. Scoliosis is a curvature of the spine, and my type is called Idiopathic, meaning it onset during puberty. There is still very little conclusive evidence regarding the causes of scoliosis but some medical communities believe that it is a hormonal mis-communication to the brain during puberty which causes the spine to go off in it's own direction.

The next four years of my life were spent waiting for me to stop growing, so I could then undergo an 8 hour long surgical procedure which involved straightening my spine vertebra by vertebrae, and attaching two metal rods to keep the spine straight and in place. Bone chip was taken from my hip to fuse the rods into place, and the following 9 month period was spent recovering: all I could do was sit, stand, walk, and lay down.

Afterwards I had a really good 12 years! I had every day aches and pains but I was used to it, as I had been in pain since about the age of 11. Before I was diagnosed, my back would ache, and my shoulder would burn. Sitting in the car for more than 20 minutes would cause sharp needles of hot pain in my shoulder blade, and some of my household chores like vacuuming and ironing caused me pain. But my mother figured I was just whining to get out of housework, and I would usually be told to stop whining. When I was diagnosed she cried for days, I remember the guilt she felt, and how badly I felt for her. It wasn't her fault, she had no way to  know.

In 1999 I became pregnant with my beautiful daughter Renée, and during my pregnancy I put on a staggering 80 pounds. I have never been able to take that weight off, and when I began to experience intense lower back pain in my last trimester of pregnancy I naturally assumed it was due to the excess weight. So I bore it as best I could, and tried to make the best of things. As the years progressed my lower back pain intensified, but I didn't talk about it much as I was sure it was weight related, and it was very embarrassing for me. To this day I am ashamed of my weight, and tend to think the world judges me harshly for it.

Three and a half years ago I took a job with the March of Dimes, as a Personal Support Worker Assistant. My first day of training I had to help an elderly man to stand up from his chair, and as I held him by his arms and he bore his weight down on me, I felt something twinge within my back. As the day progressed it ached more and more. The next day I could barely move, and had to end up leaving work mid morning due to extreme pain.

My doctor ordered a battery of tests and x-rays, and told me she was going to get me into see the top surgeon in Ontario regarding Scoliosis revision surgeries. The wait time to get into see him was upwards of a year, so in the meantime I began to take pain killers to cope with the pain.

The one year wait time came and went, and I still had no firm appointment. And finally, three years almost to the day of my injury at the March of Dimes, I was given an appointment; I saw Dr. Lewis at Toronto General Hospital last October, 2011. Since that appointment I have had more MRI's, X-rays, and am currently awaiting a CT Scan. I have learned a lot about my spinal condition, and to be perfectly honest I never imagined just how vast my problems were.

Not only do I have the original Scoliosis, which as a teenager was a traditional "S" curve, with a 56 degree curve at the top, and now is a 16 degree curve after my initial fusion, but I also have Spinal Stenosis, which apparently is quite usual for women with Scoliosis. Stenosis is a narrowing of the Spinal Canal. This can cause degradation of the spine in a myriad of ways. Add that to Degenerative Disc Disease in all of my discs, as well as Osteoarthritis, Osteoporosis (yes, I have Osteoporosis at age 40) and Facet Joint Disease in my lower 4 vertebrae in my Lumbar (lower back).

So basically, my back is @#!%&*!

There is so little information out there for people who aren't familiar with these conditions, and I want to help dispel some of the myths, and bring these diseases into the light, because quite frankly it can be very alienating to have these conditions - people simply don't understand. I am in some lovely support groups online, and the other women I know who are going through similar issues as me are just wonderful and loving and bring so much sunshine into my life. And yet they all too well understand the feeling of isolation I face - they face it too.

Okay so to begin, let me just say that Scoliosis has nothing to do with the liver. Oh I'm telling you... it has happened a few times believe it or not, where some ignoramus has actually said "oh you have scoliosis?You should quit drinking!" Scoliosis is NOT Cirrhosis - that is a completely unrelated liver condition.

Scoliosis is not caused by wearing a heavy backpack, or by poor posture. There is nothing our mothers could have done to prevent our Scoliosis, and to be honest anyone with Scoliosis will attest to having to use poor posture just to be comfortable.

You try sitting up straight when your spine looks like this:

Yes, the Hunchback of Notre Dame had Scoliosis. And no, it isn't something we find amusing... so the next time you meet someone with Scoliosis please have a heart, and keep your Bell Tower jokes to yourself.

The average lifespan of someone with a curvature greater than 40 degrees is shortened by approximately 14 years. This is because the spine pushes every vital organ out of it's natural space in the body, and the undue pressure on lungs, kidneys, glands and other soft tissue is just too much. Even when the spine is re-aligned and fused, it can never be straightened completely. 

People with Scoliosis live with chronic pain - every day. Imagine having your spine curved, putting your hips out of alignment, jutting a shoulder blade out further than the other, putting pressure on  your neck, pelvis, and everything in between. Even our knees and ankles suffer, as we tend to stand aslant, with one hip higher than the other. Most of the people I've met who have Scoliosis are tough as nails, survivors. No one who doesn't live with this type of chronic pain can truly understand, so please for the love of God - be compassionate. Most of us keep it to ourselves, unless we're having an exceptionally bad day. And the bad days can be brutal. I wouldn't wish it on my worst enemy to be honest. 

Scoliosis is believed to be predominant in women, however I have met plenty of men with curved spines. And it is also believed to skip a generation, however there is nothing solid to prove this. My own birth mother was diagnosed a few years after my original fusion surgery, though her spine is not as curved as mine - she lives with the same chronic pain.

Scoliosis can and does cause related spinal illness and disease. I talked about my Spinal Stenosis early into this post, and the fact that many Scoliosis patients also have Stenosis. A narrowing of the Spinal Column itself causes numbness due to nerve damage, aches, pain and can also cause weakness in the arms and legs. The Spinal Column is the Universal Joint that holds your whole body together - imagine it was compromised and weakened... it doesn't feel great!

Many people who had Harrington Rods (first and second generation) implanted before the mid to late 1980's have developed a condition known as Flatback Syndrome. Flatback is a crippling disease, and it is caused by the original rod fusion created by Dr. Harrington decades ago. The original rods did not take the natural sway of the lower back into account, and caused a tremendous strain on the lumbar; people with Flatback Syndrome end up falling prey to gravity over the years, eventually being completely incapable of standing up straight. When you see someone walking with a cane or walker, and they are at a 30 or 40 degree angle, bent from the hips, heads being pulled to the ground, they may likely have Flatback Syndrome. There are revision surgeries to help correct this issue, however there is so much deterioration caused by Flatback, that even revision surgeries may need to be done multiple times to lessen pain and degradation. My heart goes out to everyone I know with Flatback Syndrome, it is such a painful and crippling offshoot of Scoliosis. Some of the toughest people I know have Flatback, and they are a daily testament to the human spirit and power of the will. My blessings always go out to anyone dealing with Flatback! The photo below is of a woman named Jessica, the first picture shows her Flatback posture - the second is a photo of her after Revision surgery.

Facets Joint Disease is another bi-product of Scoliosis fusions. Here is a picture of a spine and a vertebrae - you can see the Facet Joints clearly marked:

What happens is the rods that fuse the spine in place leave the portions of the spine which isn't fused susceptible to rubbing against each other. With Flatback Syndrome the lower sway is reduced by the rod fusion and the patient becomes stooped or "pitched" forwards because they no longer have an arch in their lumbar. With Facets Disease the Facet joint which is on either side of each vertebrae can begin to wear against the facets above and below it, until they are literally grinding bone against bone. I know a lady who has Facets disease in her neck, I personally have it in my lumbar - the four lowest vertebrae on my spine. I have worn enough bone away that there is not much there but dust now, and each step I take is agonizing as the bone continues to rub against bone. I am supposed to walk with a walker, but I tend to avoid this and use my cane on extremely bad days.

If you see me walking upright, chances are I'm having a good day, or I've just taken my pain medication. The most comfort I can derive is by walking stooped forwards somewhat, to allow my facet joints the freedom of rubbing against each other.

The myriad other issues that can crop up from Scoliosis, like degenerative discs, and Osteoporosis, and arthritis, and the nerve damage incurred from having our backs cut open from our neck to our bottom... it all causes a great deal of chronic pain. Add that to the cosmetic embarrassment many of us can feel at simply standing, walking, and looking different, and maybe you can understand why I personally want to help educate people about Scoliosis.

Too many young people are being diagnosed with Scoliosis and no one is really talking about it. It isn't something to sweep under the carpet though, and really people need to be informed. Between 2-3% of the North American population has Scoliosis. You may know someone who has it. You may know someone who had surgery in the 60's or 70's, who had to live in a body cast for a year, and lay on a Stryker table, being flipped upside down and right side up every few hours. Perhaps you know someone who had to wear a back brace or neck brace during puberty.

My point is simply this: Knowledge is power. And Scoliosis isn't a deformity - it is a disease.

As I mentioned earlier, I'm currently waiting for a CT Scan to be scheduled, as I have pinched a nerve in my neck due to what my surgeon believes is a slipped or herniated disc. Once he has clearer imaging on my neck he is going to schedule my first (and hopefully only!) Revision surgery. Revision surgery is a fancy way to say "Fix the mistakes from the first surgery".

He will be removing some if not all of the titanium rods and clamps, and then fusing me from my neck down to my lowest Lumbar joint. This will help to hopefully resolve the Osteoporosis, and the Facets disease wear and tear. It will also reduce my flexibility to 0% - I will have virtually no range of motion other than sitting, standing, and bending at the waist.

It is a frightening and uncertain future to look to, and I guarantee you that anyone who had Scoliosis corrective surgery before 1990 will likely have to face Revision surgery if they haven't already.

So please be informed, and talk to your family. Have your children screened please - early detection can help reduce the need for surgery, as they have made amazing advancements in bracing, and physio-therapy! The simplest way to check for Scoliosis is to have your child stand straight, and then bend from the waist to touch their toes. As they stand in this posture, simply run your fingers down their spine. No spine is perfectly straight, but you'll know if it is curved beyond the norm - and if it is, calmly make an appointment with your family doctor for a proper examination.

Your spine is the thing which holds you all together, and it is vital and should be treated with respect and love. Spinal health is so important, and to anyone suffering any type of spinal disease, be it Scoliosis related or not, I wish you the utmost love and support. Be proactive, seek medical opinions, get tested, and be gentle with yourself. I used to try to do too much, and end up in pain for days afterwards. But I have come to accept in the past few months that over-doing anything will only hurt me in the long run. So I am slowly beginning to let go, and not stress so much over housework, chores, and my weight.

I hope this blog entry helps at least one person better understand Scoliosis, the related issues surrounding it, and the myths which cause so many of us to feel ashamed, when really we should not at all.

If you're a woman with scoliosis, or with a loved one with the disease, please feel welcome to join the Facebook Support group I host called Twisted Sisters

Thank you ~ Be Blessed.

Coping with Grief and Death

The unexpected death of someone we have known on any level and in any capacity can be a profound experience; death has a way of making us feel small, insignificant, fearful even for our own impending sense of mortality.

It may sound cliche, but we each of us are wired up differently, based on who we are, our past experiences, and the morals and values we hold dear; no two people grieve alike. I believe it is so vital that we allow ourselves to grieve in whatever way comes naturally to us, while also creating space for others to experience loss in their own way.

I was fortunate to have not experienced a lot of death in my life as a child and young woman. It wasn't until my father passed away on May 10th, 2006 that I truly got a taste of what grief was. To then I had lost grandparents, but while I was still relatively too young to really understand the spiritual ramifications of what death represented to me. I had lost a dearly beloved cat in 1996 which introduced me to grief and mourning, and in truth that loss was so profound that to this day when I think of that sweet black and white ball of fur I still get a little misty. But my fathers passing was my first real taste of significant unadulterated and painful loss.

My father and I were not close. In fact, we had an extremely volatile relationship for most of my life. I won't go into the details of our extraordinarily dysfunctional relationship as that isn't what this post is about; but suffice it to say I spent quite a bit of my teen years wishing he were dead. I truly hated him at times, and wished he were not a part of my life.

And yet, in the last four years of his life before he passed away, we developed a new level of respect for one another, and as he shifted gears to go from heavy handed authoritarian dictator - father, to relaxed and pleasant grandfather to my daughter, we began to explore different ways of relating with one another. I am glad to say that the last four years of his life were easy, peaceful; we truly appreciated each other. Finally.

When I got the phone call from my brother that May evening telling me our father had died of a heart attack in the kitchen early that morning I went into shock immediately. I didn't know it at the time of course, but with the clarity of hindsight I can share my experience with you to help illustrate my point. I was packing overnight bags while still on the phone with my brother, issuing orders to my husband and daughter, getting our affairs in order so that we could leave immediately to drive the 50 miles to my home city to be with my mother and brother. The next few days were a blur of funeral plans, casket purchasing, and eulogy writing as my mother asked me if I would speak for the family at the service. In a whirlwind of neighbors dropping by coffee cakes, and friends popping in to share a cry and a laugh as we talked about my father and the experiences that stood out in all our memories.

The funeral was beautiful, he was a well respected man with a great number of friends and acquaintances and colleagues. I don't remember much aside from smiling politely, shaking hands, hugging numerous people, and feeling numb and empty.

At the time I thought I was handling his death beautifully. I had just begun reading the Conversations with God trilogy, and found so much solace in the books. As the Spring turned to Summer, and I moved on to the final book, I remember feeling in a state of nearly constant euphoria. I was sure that every minute was a miracle, and every encounter was a gift from God, and my father. I saw him everywhere, I felt him and smelled him and had such a feeling of contentment. I remember thinking to myself how happy I was to be handling his death so well.

The truth of the matter is I wasn't handling his death well at all, I was in denial of it to a great extent, and I used the beautiful imagery in the books I was reading to create my fathers "happily ever after" scenario. It gave me a sense of safety to imagine my father as a guardian angel now, looking down upon me. And in truth, I still rather like this imagery, it makes me feel safe and secure. But I had to come to a point within myself where I realized that I wasn't dealing with my grief; I was simply wrapping it up in a shiny package, labeling it as Divine, and then not looking at it.

It took me a few years to figure this out of course. It wasn't until I was able to really contemplate death, my ideas about it, my relationship to the Universe and Spirit, that I really understood that I hadn't really moved past my dads dying.

Now I share all of this for a very exact reason; though I didn't deal with my grief directly at the time, I dealt with it in the only way I knew how to - by making it more beautiful than I could imagine, and by ultimately putting all of my sorrow into a box and tucking it neatly away in my psyche. It wasn't a healthy way to cope with my sorrow, but it was the only way I knew how to cope at the time.

And as time moved on, I eventually began to recognize the sorrow within me that I had not yet looked at and expressed. And as nature took it's course I began to slowly express it, feel it, look at it and then grieve in a much more honest, personal and rounded way.

Everyone has their own way of coping with death, and while it may seem "wrong" to another, none of us are in a position to judge anyone else. I can say with all honesty that a few family members were upset with me and the way I reacted to my fathers death. I irritated more than one person with my airy-fairy platitudes about Heaven, Angels, messages from butterflies and birds... and in fact it created a rift between my brother and I which we still have not healed to this day. My way of avoiding my grief by clinging to euphoria angered him. And the angrier he was the less inclined I was to want to be around him. Eventually we fell out, and I have only seen him once in the last 3 years.

All because I grieved differently than he did. Seems a shame.

Death is a natural part of life - nothing is eternal on this planet. Everything must ebb and flow. And yet death is a sacred and personal issue for each individual person. Some people deal with grief rapidly, others can take longer. Still others may  never truly get over the loss of a loved one.

So while we make room for ourselves to experience death and loss in our own way and time, so must we be compassionate enough to allow those around us to deal with death in their own way and time as well. It is important to know that not only are we grieving the loss of someone we valued or loved, but we are also grieving the loss of our impending mortality as well, because let's face it, death reminds us all that we too will die one day as well, and that can bring a lot of fear up from within.

I have personal theories and beliefs about what lies beyond this life, but none of us can be 100% certain about what is next. We can only have faith in what our hearts guide us towards. And we must have faith in the guidance other peoples hearts guide them towards.

So be gentle with yourself when you are dealing with death. And be gentle with those around you as well. Our emotions can be multi-faceted, and it is amazing the lengths a psyche will go to in order to protect it's own innocence.

Death is inevitable. Love is limitless when guided by patience and tolerant compassion. When you make room to allow others to feel what they feel in their own natural way and rhythm, you ultimately give yourself the space you also require. And that is all any of us can ask for from one another when faced with the heart crushing loss of a loved one.

Be gentle with one another.