Early 2013 marked 15 years since my multiple sclerosis diagnosis. I didn’t have a flare this past year. In fact, I’ve only had a mild one in the last decade. I got my annual MRI. No enhanced lesions. Just spots. I can’t say that anything changed dramatically this year. But the progression of my MS is steadfast. Things are happening, but my MS is a slow mover. It gradually comes for me, taking little bits at a time. This past year I felt more fatigue. More drop in my foot. Slower getting around some days. Numbness and tingling for a day or two. Most of the time I feel fairly stable though. One might think that’s not enough. But for me, much of the time, it can be. I’d love to get better, but I desperately don’t want to get worse.
My fear of my MS worsening is strongly fueled by the decline I’ve experienced in the last decade. MS progression terrifies me more than anything in life. I just want it to stop. It would be nice to get better, but it can be difficult for me to imagine this as a potential reality. Reverse the damage? A cure? When I was diagnosed doctors and researchers were telling people they expected a cure within 5 to 10 years. Five years later the same thing was being said, and even now. It’s painful to hang on those words that haven’t come to fruition in the nearly 16 years I’ve been living with this diagnosis. So what I think about most days is just holding on to what I’ve got.
Thinking bigger, I do have a lot on my wish list for the new year. I want options to manage more of my symptoms. I want safer, more effective treatments for progressive MS. I want to be stable. But my true wish, the one that enters my mind and stings my eyes with tears, that wish is that someday I can live free of this disease. It all goes away, and I get everything back. I can live without all the drugs and devices I use now to get by each day. I am whole, and don’t live in fear. That is what I want for me, for everyone with MS, for everyone who loves someone with MS. I’ve heard it said in movies; It’s good to want things. Here’s to wanting it all and having hope that someday soon, it can happen.