10 years
10 years. It’s been 10 years since I looked at that very first MRI of my brain and saw all those white spots. January 19 has always been a day that my life changed, because 31 years ago my amazing brother was born and I am beyond grateful for that every single day. But today is also the day that completely rocked my life to its core. 10 years ago my life would never be the same. It was a day that came with uncertainty and with heart ache for me and all those around me. It also came with decisions and with passion. It’s like something inside me already knew what I had to do.
23 years old, my whole life ahead of me staring down a disease that I was “way too young for.” What do you do with that? A disease that just 10 years ago there were very few options for. No known cause, no known cure and no guaranteed timeline. How do you plan? How do make decisions never knowing the facts? Because the only fact about MS that is certain is that it is unpredictable. The constant fear of the unknown can be almost more debilitating than a relapse.
In the early part of the last 10 years despite always trying to remain positive, I lost myself to this notion that MS somehow made me worth less, sometimes even worthless. How could I make a good employee? A good partner? A good daughter? A good sister? A good friend? A good parent? A good team member? A good anything? It made me vulnerable and it made me sad, but I never actually let myself feel sad because I always reminded myself that other people with MS have it much worse than I do. I never let myself grieve the job I thought I would have, the family I thought I would have, all the things that I pictured and worked for that would now look different, and not because of anything I did, not because I didn’t work hard enough, but because my body decided to betray me.
It was trying to ignore that feeling of betrayal and helplessness that both helped and hindered me. But I don’t regret it, looking back it taught me a lot and recognizing it has helped me move forward. It took a long time to learn that the complete control I crave over my disease is impossible. I have many tools to manage it, but in the end managing is not control. The one thing that I can control, and we’ve all heard this before, is myself, my actions and how I respond.
So how do I make a good anything living with MS? I control what I can, I show up on the good days and accept that on my bad days I’m still enough because those bad days are in fact out of my control. Those bad days don’t make me worth less or worthless, they teach me to listen to my body and to truly appreciate the good days.
So much of my life is wanting to live my life while not letting this disease stop me (hence: you MS’ed with the wrong girl). But the other part of me realizes that maybe if I push too hard it will catch up with me and that I might pay for the yolo (does anyone even say that anymore) attitude. The way I live with MS 10 years ago compared to now is so different, it’s different than last year and different than 5 years ago. If anything the best way to manage MS is to learn to be flexible and adapt. As the years have gone by I have added tools to my managing MS tool kit. But a lot of those tools have come with the amazing amount of research in the past 10 years. Things like diet, certain vitamins, new medications, and exercise. 10 yeas seems like so long but also like no time at all, but when I look at the advances that have come in the past 10 years it is nothing short of incredible, even if it’s not one of those all important c words yet.
Being involved in the MS Society has made me feel part of these advances in a very real way. From a young age, I was never one to sit back when someone needed help, and 10 years ago, the two letters M and S lit a fire in me. As the number of people with MS grows every year, it just fueled the fire. As much as this fight has been about my own life, it has been for every single person who has been impacted by MS.
At the beginning I wanted nothing more than to ignore it, to fight it off as if it wasn’t part of me. But it is part of me, I’m fighting to keep my body strong despite it, fighting to learn to rest with it, I’m fighting to still live my best life with it, to make the right decision for myself and my family and I’m fighting for everyone with MS and their families. But I think more than anything I’m fighting so that everyone around us can learn more about it. I realize now my fight has always been to make a difference.
Despite it all I have managed in 10 years to live a life I am proud of. It has definitely not been easy and has come with second, third and fourth guessing myself almost all the time, as well as constantly weighing all the options. When I look back over the last 10 years, I don’t focus on the two major relapses or countless MRIs and conversations with doctors. I think about all the bike tours across North America, the conferences, the speaking engagements, the research, the people, the opportunities, the awards, the community, the documentary, the connections, the support, the events and so much more.
It’s been 10 years of learning, learning to live #LifeWithMS and learning to live life despite my MS. But really this 10 years has been full of the same up and downs as everyone else. A decade full of hearts breaks and butterflies, of endings and new beginnings, of choices and consequences, of moving forward and moving back, of profound losses and beautiful creations, of mistakes and successes and everything in between.
It's been 10 years and in these 10 years I can say without a doubt, that just like I never know what to expect with MS, I don’t think it knows what to expect from me and that’s not going to change anytime soon so stick around because I’m sure the next 10 will continue to surprise us all.
