I Pray:  from a Medical Refugee

You don't know me. I'm one of the faceless 75,000 pushing our Government for help. 

Once I was an athlete, musician, writer.  Now, the so-called experts, who hold my fate, and thousands of others like me, in their hands, label me only MS patient.

I want to scream.  I am so much more than this devastating disease.  I am a living, breathing, thinking person.  And like you, I feel, I hurt, and I love.

Each day I suffer the pain of watching my function slip away.

Each day I hope this is the day I will actually do something so mundane as go to the bathroom.

And each day, I am saddened by my decision not to have children.  But because I love, I could never condemn them to this hell, or to be absent for their growing up.

I want you to know that I will battle tooth and nail for a future: for a chance to keep talking, an opportunity to keep thinking, and a chance to keep walking.

I will fight with the same dogged determination I learned from a lifetime of sport. I will not give up when doctor after doctor abandons me-despite saying they would do the same if they were in my boat.

I will not give up when the MS Society forgets its mandate to find a cure-and instead focuses only on helping us live with our disease.

I live in Canada, a country with supposedly one of the top medical systems in the world.  And I am forgotten by both our Government and our healthcare system. How do the experts look themselves in the mirror knowing there is a chance for a better quality of life for us all? How do they sleep at night having willfully ignored the science, and used one delay tactic after another?

My fellow Canadians, do not be fooled by the promise of clinical trials. How many of us will actually be treated, and when will we have any real answers - in two years, three years, maybe longer? In the meantime, thousands of us will get sicker, and hundreds and hundreds of us will die.

We are not fooled by your using 'science' not to do science-nor your ugly conflicts of interests. You have made us medical refugees, travelling the planet for a glimmer of hope that our country denies us.

We are forced to mortgage our homes, our futures, to chase the healing that you refuse us. And when we return, you abandon us again. You cancel our appointments, our tests, and you threaten removal of our drivers' licenses. Today, it is MS.

Maybe in the future, it will be your health, your future at stake.

I pray they see you as people, not a disease.

I pray they grant you compassion.

And I pray they respond swiftly, putting your interests before powerful lobbies.

Anonymous

http://www.facebook.com/notes/ccsvi-ontario/i-pray-from-a-medical-refugee/192895800781332