When I was first diagnosed with MS (in November of 2010) I went in with the attitude of ‘information is power’ and I read everything I could get my hands on to learn more about this insidious disease.
Naturally, my ears always pricked up at the mere mention of those two initials, most especially when news reports would declare a ‘breakthrough’. But eventually, as time marched on, to that unending beat that only time knows, I stopped reading and I even stopped listening. It was all getting too much to fit into my brain and the roller coaster of emotions that came with hopes and dashed hopes was just too overwhelming. It sounded (and felt) like a whole lotta empty promises. The eternally hopeful, Miss ‘I’m going to be positive about this’ had turned cynic almost overnight. “Another development”. Whatevs. “Breakthrough in research”. Yup. “On the verge of…”. Heard it all before, sunshine…
And yet, I still knew in the back of my mind that I was the direct beneficiary of countless years of hard work and commitment to finding a solution. At the time of diagnosis, I had just four drug treatments available to me. Now, just eight years later, treatment options are in the teens and they are becoming more and more effective.
Just very recently one of my dearest gal pals sent me a link to an article about one of these breakthroughs. My darling friend prefaced the attachment with a disclaimer: she didn’t know anything about the validity of the article nor the work described therein, but she hoped that it was a link to the answer that I so desperately needed.
And just like that, my dear friend, my trusted confidant of 40 years, flicked a switch in my head.
She had retained the hope that I had discarded.
And so I read the article, and I learned that the researcher involved had been working in the field of neuroscience for like, forever. Her whole working life.
I’m part of a clinical trial at the Brain and Mind Research Institute in Sydney, where young neurologists make me touch my nose and hold my arms out while I walk on my heels. They take blood samples and do eye tests and examine MRIs. And they record every little detail and then they look for clues. This is what they go to work to do.
Some neurologists collect tissue matter, like the brains of people who lived with MS (after they’ve died of course!) and use them to teach up and coming neurologists or scientists or researchers or all three. People donate their brains!! And other people spend the rest of their working life see what that brain can tell us about the disease.
How dare I lose hope when so many very clever people have dedicated their lives to make my life better.
How dare I lose hope when people have the good sense to think ahead and donate their brain (did you actually read that? I said THEIR BRAIN!!) to science for research.
How dare I lose hope when very generous people work tirelessly to raise funds to allow all of this research to continue.
So many clever people, so many generous people spending their whole lives working to make my life better.
And so I hold on to hope, and I truly believe in my heart of hearts that it will all amount to an answer one day. And tonight when I go to bed I will say a prayer of thanks for all the very clever people.