A Life Lesson in Compassion

I had a mid-level management job, a beautiful child and a mesmerizingly handsome husband whose only visible fault was that he liked beer a bit too much.  Other than that we were setting up pretty fine. Employment was pretty good. That is until the lay off came. But after a summer to reconnect with my 5 year old, I would find something great and get on with it! That is until two months into collecting my unemployment insurance I lost control of my left foot. My nurse sister-in-law who came to visit for my father-in-law’s funeral that warm August summer confirmed this strange flopping foot (drop foot). Following this strange symptom I discovered how prickly and odd my hands (pins and needles) were feeling. Highly respected doctors attributed it to my insane gardening regimen. I must have pulled something, struck a nerve, drank too much fine wine by the pool! But wait that’s not all there’s more to this weirdness. Not to be outdone my eyeballs decided to get in on the act and I awoke one morning that early September to a fog. Everywhere I went I walked through a white film (optic neuritis). I had it seems gotten something that might require a visit to a neurologist. I really didn’t have time for any of this as I was on the job hunt and had a successful panel interview with a big energy company. They told me one more final interview and I had the job! 

And so this tale of ‘woe this is your life’ now came to be. I was summarily diagnosed with MS (Multiple Sclerosis) and told that everything would likely be fine and sent home. I don’t know exactly how I drove home alone from Toronto to Oakville, but I did. I was terrified, tearful and had no idea what foibles yet to come were to befall my little family and me. Nowhere in school was I told how to deal with the possibility of this happening; were you? I mean besides those who were drilled and taught to hide under their chair or desk during an atomic bomb, what else did they teach us? I missed those particular lessons and can get that they might have been scary but I’m thinking they were likely more confusing than anything else since no bombs were falling anywhere near those kids. Nowhere during the time that I was growing up did anyone ever warn me to plan for such a possibility. I had no idea this could happen to me. Other people got sick and died. Wars were fought all over the world while we went to school and played in the streets oblivious to it all. Later as a working adult, the news told us all the time about tragedy befalling others and we would shed some tears for the shame of it all. But never, ever, did we believe that something like this would happen to us. We were smart and cute and nice, this couldn’t be happening, could it?

These were the beginnings of my real adult life lessons. Not the lessons about how to get that great job or what courses to take to garner a raise or promotion.  Nothing like getting a progressively disabling disease to teach a person what really matters in this life.

Why do we not teach our children to prepare for the real dangers of life? Those dangers that are not preventable but sometimes inevitable. That may not cross your path at this stage of your life, but inevitably illness or some level of disability or physical challenge will reach you.

More importantly why are we not exposing them to the people who suffer these indignities of life and teach our children to lend a hand because it is the right thing to do? Teach them not to shame those who cannot do what the headless rushy push of society tells them to.

It’s as though our parents, teachers and later employers indoctrinate us that this is how it is. Is it really? Has it always been this way? Is it right? Is it healthy? Does it lift the common good for us all? Clearly it does not but it so easily has become the maxim.

It is too bad that it took an awful disease like Multiple Sclerosis to really clarify life for me. But I’m glad it did that because I have learned that I have developed a greater capacity for compassion and the willingness to act on it than I did before I was sucked out of the rat race.  It also took off my blinders to the indifference and cruelty perpetuated in our society by those who rise to the top and make those critical decisions that affect those of us living with chronic illness.

That is why it is an important discussion for us to have.  It should be talked about openly and with fervour because things are not getting better, they are in fact getting worse. There is less to share and fewer hands to help and that is a shame for everyone. A horrible shame because we all need help whether we think we do nor not and we should all be helping one another, not seeking the role of deciding who deserves it more or living in maintaining the rule of even. There is no even because nothing is fair for anyone ever.

CCSVI: A Journey for Justice

It was May 5^th and CCSVI Rally’s were well on their way at locations across Canada; one of which I was to attend.

The fun began when wee hours of the morning found me on one of a number of numerous nightly sojourns to the bathroom to force a spastic and uncooperative bladder. The hours consisted of tossing, flipping channels, squirting my cramping and burning feet with cool water and praying for sleep. I arose with the newly unnecessary early morning alarm trying to focus. How would I survive a day of bussing, protesting and return bussing on 3 hours sleep? I was exhausted, bleary, and teary having what felt like pop rocks racing my face. I was supposed to fight to get better. My husband understood and was very gently speaking in clear words with a firm hug that there was no way I would make it through the demands of the day. Symptoms would increase, taking days to recover. He was right. I started crying like I was missing the biggest birthday bash of the year. Writing my misery on my Facebook wall, everything felt surreal. After receiving much needed words from my Facebook friends I was still at home with my sign and miserable as I could be, not strong enough to fight for myself. 

I slumped off to bed and awoke with the protest well underway and so I decided to write. There is something cathartic about writing. So I keep building my Blog for eventual publication because I want so much to make a difference for my MS/CCSVI family, myself and others who have to live with chronic illness in all it’s forms and intensities. We are in a very serious battle for our literal lives.

I haven’t had venous angioplasty even though diagnosed with CCSVI and I am frightened that it will take too long to get it. I’ve had this beast for so long. Major relapses are a thing of the past, replaced with increasing numbness, stiffness and weakness among the other daily myriad of symptoms. They are decidedly queer symptoms that invade with great regularity, and boundless tenacity churning and pounding upon my body and psyche.

Because many of us seek relief from this particular beast we have been told we have to wait until the powers that be determine on our behalf whether or not we have a right to get treatment for a condition that if we didn’t have an MS diagnosis we would get treatment for. Never mind those pharmaceutical companies and their neurological cohorts that are making a literal killing off us.

By this I am angered and incensed daily with the astonishing twisted sickness that permeates the society in which I live.

No wonder I can’t sleep. Everything is distorted to appear normal and balanced on the surface with scientific rhetoric and paternalistic patronization. Beneath the sheep’s clothing it is a sordid, most evil tale of power and greed and an endless display of how dispensable and worthless most human lives really are. People are tossed to the lions of business and war; the living breathing chess pieces that suffer and die to the ceaseless drum beats of profit and power in exchange for wasted suffering human life.

There is a clear imbalance of power in the political, medical and corporate structures that have developed and there is little or no accountability and definitely zero transparency. They are all in bed together enjoying a grand orgy of ruthless profiteering, subjugating and lying to the unwashed masses they are supposed to serve and protect.

I am sad, I am angry and even though I feel alone I am not.  And I will keep on trying to open the zombie eyes of Joe public to the truth of the fact that we are all being taken for a massive ride and many of us are literally being sacrificed.

Blessings to you all should you find me.

Dr. Neuro & Slick Sam the Pharma Man

Dr. Neuro & Slick Sam the Pharma Man

I was feeling restless last night and was reading some interesting blogs. In my travels I came across a nifty website called www.xtranormal.com where you can make your own mini-movie.  I thought I’d give it a go and came up with this little piece.  It is basically a conversation between Dr. Neuro and Slick Sam the Pharma Man discussing CCSVI and Multiple Sclerosis.  It is my first attempt at this sort of thing and I found it a hell of a lot of fun and quite frankly exhilarating.  So much so, that I may do another one!  I hope you at least get a giggle out of it and thanks for stopping by. 

Blessings

Forgotten Introductions

With some embarrassment, it has come to my attention that I have neglected to introduce you to my beloved family and friends.  Too busy talking about myself I guess.  So I’ll get right to it.

God blessed me with a stick-with-me-through-anything kind of DH for the past 18 years.  Who also happens to be darned nice looking, which doesn’t hurt when everything else does.  He has been the kind of person who never let me believe the worst even when I was right in the middle of it.  It would always get better, he often promised, and eventually it did mostly. He also never ever suggested he couldn’t accept my illness like I had been warned he would (by an employee of the MS Society no less but more griping about that in another post).  In fact he was the one that researched my symptoms until he figured out it was MS, long before any official diagnosis was ever made.  And the first thing he said the day I found out was that we would go through it together.  And so we have. 

Before the insanity of MS started we made a beautiful baby girl together. She is now a ripe ole’ 16 almost 17.  She is an amazing kid who learned her mom was sick when she was only 5.  She also had to learn that her Mom couldn’t do things that other moms were doing.  But the experience shaped her in a way that has given her resilience and independence that many of her peers don’t have.  Their parents were healthy enough and of a mind to helicopter and micromanage them and still do.  She missed that particular luxury among a good many others.  I am beyond proud of her and the person she has become.  Some blessings are so great and priceless that they are indescribable and this is my little nuclear family.  I can never do them justice and so I just thank God for them and love them imperfectly but as best I can.

Our extended family has been and is very far away.  Either living in Europe or in the U.S. or gone.  This made my chronic illness a very difficult and isolating experience I wouldn’t wish on anyone.

Up until last year I had a Dad who had raised me alone in Canada until he got married and moved out of the house! He spent the last 17 years of his life overseas living with his second wife in Poland and visiting us periodically. He was too far away to ever really fully grasp how MS had impacted our little family but was on board with CCSVI treatment. Unfortunately we lost him just before Father’s Day and so our little family shrunk even more.  This whole situation was more agonizing than space allows in this entry but I will talk more about this later.

Over the years we had many friends that slowly or quickly seemed to fall away either through our own neglect of them or their inability to understand or deal with the fact that we were sometimes simply falling apart.  Folks don’t know what to do in those uncomfortable circumstances these days so they just sort of go away.  Some of those losses were as heartbreaking as a broken love affair and took a long time to get over.  But there are a few friends that really stuck including a couple that I had since I was very young.  They are the true blue ones that know you and accept you and love you for whatever or wherever you may be at that time.  They are my dearest friends and I love and cherish them but they are also either very busy surviving or live very far away, and so I rarely get to see them.  But no matter how much time passes between our contacts, conversation picks up right away and we just fall into the comfortable communication that only old and tested friendships can.

We also live near some pretty amazing neighbours that would be sorely missed if they ever went away.  We are very blessed to know them.

I can’t finish my introductions without mentioning two very silly and hairy cats that are also very much a part of our household.  They are loved by each of us and round out this slightly crazy circus life out very nicely.

Signing off for now!

With Blessings.

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CCSVI Liberation or bust!

Here I am finally writing my first piece about Keetcha’s Journey for Liberation.  This is the CCSVI war front that MS patients in Canada and worldwide face.  Thus far, many months were spent wondering if I could even do a Blog. Many documents were saved that so strongly influenced my thoughts.  Links will be created here for your use and hopefully to your benefit.


It is important to share what may be considered to be pertinent information. Particularly if it relates to Dr. Paulo Zamboni’s CCSVI Theory a.k.a. “Liberation Treatment” or more recently renamed CCSVI Angioplasty.  I for one prefer to call it Venoplasty because it is performed on veins and not arteries.  I also like the moniker of Liberation.  After all, it liberates the blood flow!  Hmmm, so maybe I should call it CCSVI Venoplasty Liberation Procedure?  Under any and all of these terms it should be clearly understood that this is a minimally invasive surgical PROCEDURE that is available to people who have not been previously diagnosed (permanently labelled) with Multiple Sclerosis.  The situation is not so for us here in Canada.  I started to see how twisted things have become in our society through this experience and others since the time of my diagnosis.  Now we are facing stark and blatant discrimination when a shimmer of hope has finally been found.  And we are receiving it from the very ones who are supposed to be helping us.


My family, and I have lived with an MS diagnosis and it’s symptoms and attacks, for over 10 years.  In June of 2010, I was able to get screened for CCSVI (Chronic Cerebrospinal Venous Insufficiency).  There was a several month wait and it was indeed fortuitous that I managed to snag an appointment at Dr. Mac Donald’s, Barrie Vascular Imaging.  It was found that I had 4/5 markers for CCSVI and only 2 are needed for CCSVI.


I also managed to get an appointment with the now well-known Dr. Sisken of Albany New York in the U.S.  Unfortunately, during my waiting time, 2 days before Father’s Day, my dad died and life really got in the way.  Following this, I was forced to cancel my appointment to get the CCSVI Angio/Venoplasty Liberation done.   I did some fundraising but haven’t been able to collect the amount needed to go out of the country for this procedure.  So I wait and plan and hope.


Before and during all of this I have been active on Facebook with my other MS brothers and sisters.  For years I was alone in all of this MS hell, aside from my immediate family and friends. Suddenly, I had access to many people worldwide who really understood and just “got it” when you said something.  It has been incredible and inspiring to be sure.  As a result of this amazing social media, I was even able to go, meet and protest with some of them in downtown Toronto!  I have made friends for life.  I weep and clap with joy when they succeed and cry when they are suffering.  We are all in this together.  A new family created out of need and nourished by love and hope.


But with all this joy is a growing anger within me when I recognize that an injustice is being done to people who have been labelled with MS.  Particularly in Canada but also in the United States, the U.K. and other locations around the world.  I suddenly began to put pieces together and realized what a mess this supposedly civilized western world has made.  And so, this Blog was born.  Out of a need to share and also to speak.  I don’t know when I will be able to get the Liberation Angio/Venoplasty done. In the meantime, I invite you join me on my personal journey to freedom and witness the battle that all MSers face for equal access to this safe and effective treatment.  I will also be opining on other subjects that have come to cross my path in one way or another, which may or may not be of interest to you.  But I’ve been quiet for too long, so I will write anyways.


I encourage you to comment if you feel the need to.  I will try to respond as quickly as I can, if requested to do so.  I am so glad you stopped by and I hope you find something of value here.


Blessings!