I wrote this article a few months ago but hesitated in publishing it. I think I hesitated because if I published it that meant everything I had said was a reality. It is a reality. It is my reality. It is my story and my MS journey. Each day holds something different. It’s not easy and that’s okay. I have invited this community into my MS journey and I need to honour that connection by being honest about where I am at. So without further adieu here is another chapter in my story.
Tuesday of last week started out as a day with such promise. Sure, this crusader had to get up at an hour she would rather not see but it was a bright and sunny day! How could a beautiful day not be an occasion worth smiling or enjoying? However, by late morning those smiles would be replaced with a few tears and a lot of frustration. Still more surprising would be the end of the week. It would bring more love and support than a crusader ever could have imagined.
A few weeks ago I underwent my now annual brain MRI. I am on a medication protocol that requires the brain to be monitored for any abnormalities. My 2012 results were very promising and showed no new lesions. It showed that my MS was in, as my Neurologist puts it, “a tentative remission.” Remission was a word that had not been uttered in the 6 years post diagnosis. It was a word that lulled me in to a false sense of security. I know better than to think MS is anything but unpredictable but it was a sense of relief that I didn’t have to worry about it as much. My 2013 results were less promising. Remission is no longer on the table.
My family doctor is amazingly empathetic and it was evident that he was not thrilled at having to give me the results of my latest MRI. I am used to getting test results. Tests are a never ending normal when you have MS. Blood tests, MRI’s, Neuro tests. I am a pro at tests and even though getting the results always include an anxious few minutes, they are inevitable. These results were unexpected. I was ill prepared. It was like going into a battle with no armour, no protection. I know better.
My doctor gently lowered the boom. New lesions are clearly evident. Few have reduced in size and others have grown. The false sense of security I had held on to ever so tightly faded. Remission is no longer on the table and that is just the way it is. My progression is not alarming but the disease is very much active once again. It always takes me a few days to digest bad news. I don’t want to talk to anyone; I don’t want to see anyone. I want to be left alone to process. After a few days I took to my personal Facebook and updated my friends and family as to what my results had been. They too had been so hopeful that my remission would be continued. It was a day that had held so much promise for them as well; a day in which they hoped that their prayers and love had helped me in my MS journey. I think my results were just as heartbreaking for them as they were for me.
After posting my results I received an outpouring of love and support. There were prayers, love and encouragement in each comment and message I received. I was told to remain strong; I was told that I was strong and courageous. I do not think I am any more strong or courageous than the next person. My circumstances are a little different than most but I hold no illusions that I am any kind of strength hero. I use my MS diagnosis as a means to advocate and educate but I am no stronger or courageous than the next person battling this disease. I am just a crusader for the cause. We are all crusaders for this cause. We strive to make the transition for the newly diagnosed, those struggling with MS, and the family and friends somewhat easier. We tell our stories in hopes of touching just one person who needs support or a community. I think this community does a pretty damn good job.
I am grateful to belong to the SLM and MS communities and to have strong support systems. I am thankful for the people that helped turn my tears into smiles; it meant the world to me. Now, it is time to go forth and pay it forward. Until next time my friends, join me and smile while paying it forward.