Introduction

September 14, 2010

What an experience this whole situation has been! I have learned more about human anatomy and physiology than I have ever wanted to know, all while hurting so much that half the time I felt I was a robot, rusting slowly as I moved through a wet and dense Newfoundland fog. 

I have seen miserable lawyers who couldn’t possibly crack a smile without payment. Talented lawyers who could really use some training in customer service skills and case management, then I have also seen a lawyer, one lawyer who knows how to play the legal game, even when the medical diagnosis that supports the case is as confusing as our laws themselves. This one Lawyer, the creative one with the sharp tongue motivated by years of experience, is the Lawyer I can proudly say is the one who chose to help me fight this confusing, but life saving, battle.

Life saving? Sounds so ominous! You would think this word would only apply to illnesses that would bring an end to a life. Well, as I have learned, there are many different ways to end a life and they do not all end with a coffin or an urn.

Life can easily be ended by just losing who you were and being unable to replace that loss with someone new that you can live with. That was my case, is my case. 

My body is sick. I am ill with a diagnosis that most Canadian medical doctors have never heard of, and the ones who have heard of it let their arrogance carry them into explanations that years of medical research could easily disprove. It’s kind of funny to think that during this journey I have taught some physicians, namely mine, more about this diagnosis than they ever thought they would need to know, or ever need to use again. At least I am happy to say, my Physician took the time to listen and learn, both with me and on her own. She cared enough to learn how to help me. This is more than I can say for my last Doctor. In my mind he’s more than half the reason I am here in this situation to start with. No, he didn’t make me sick, but he also didn’t care enough to help me figure out what was wrong in the first place.

So here I am, 40 years old, sick, unable to work while trying to fight insurance companies, the legal system, and the Ontario Provincial health care system to ensure I can turn 50 without having to be in a wheelchair or dead. 

If you were to see me on the street you’d probably look at me and think “she’s young and healthy”, and I do look fine. I look normal, just like you, but if you could see beneath the surface you’d probably cringe and think, “What the hell is that?” 

I saw my MRI the day it was done. Thanks to the wonderful world of Photoshop I was able to quickly drift through the images that at the time didn’t mean much to me. I’m no Neuroradiologist, but when I got to the image of the lower part of my spinal cord even I could tell there was something abnormal going on there. You couldn’t miss this weird shaped bubble that extended out of my spinal cord then drastically enlarge resembling grapes on a vine. Even the little cervical cysts stood out. For some reason, the little bubbles glowed white against the dark background. Shortly after the MRI’s were done I got the diagnosis of two small cervical Tarlov Cysts and one giant Tarlov Cyst filling my sacral canal and causing bone erosion. 

It's been a journey in learning and so far from over........ but the issues I've discovered facing Canadians on a daily basis is more than any person should have to suffer through. Just to know better is possible, but then be forced to accept that you can't access "better" is one of the hardest things in the world to accept. I won't accept it and I hope you don't either.