“Step up and give this hell. Just like training a marathon. One step you have to take and just keep pushing forward. One foot other foot,” -Darrah
It is really hard to even think about Multiple Scelrosis while talking to Darrah. She just might be the most energetic, bubbly, and optimistic person I’ve ever met. From the moment I met her I was instantly in awe of her enthusiasm for life. Her story is so remarkable and inspiring. Read it for yourself and you’ll get an instant dose of optimism.
“When thinking of when my story really starts, I think of 2013. In June 2013, 8 months after running a full marathon, I woke up one morning and half my body was numb- in that cold, tingly, asleep kind of way. It was bothersome enough that I was worried about it. Since I had been running distances, I was particularly concerned that I may have done some damage that needed treatment. Doctors thought it was a pinched nerve from a new exercise routine, put me on a steroid and sent me for more tests. About a week later, after X-rays and MRIs looked normal, my eyes started wiggling back and forth in a way that was uncontrolled and unpredictable, and which affected my vision. Then, still, we thought maybe this new symptom was a reaction to the medication. Off I went to another doctor for more tests, and more scans. I had been persistent up until this point that there was something more serious going on with the numbness in my leg. The movement in my eyes didn’t seemed connected to me, but validated room for concerns with physicians and those in my circle.
2013 was the year that, at 29 years old, on Halloween- I sat in a neurologists office and was told that I have Multiple Sclerosis- a potentially debilitating autoimmune disease that seems to come from nowhere- and that I’d better choose a medication fast, because, the sooner we treated things, the better; and we “don’t want you to end up in a wheelchair.” I left that appointment and immediately broke down into sobs. I wailed over and over again to my parents that I wanted to die, because I truly thought my life was over.
From that day when I woke up in June, through the conclusion of that year, I was in a constant battle of feeling like I woke up in the twilight zone, wondering where my life went. I was unable to work due to my vision. There were a lot of tears. A lot of wondering “why”, and telling myself this was unfair, and expecting that at any moment, something else would happen. Initially, I refused medication. I was resigned to allow my body to attack itself, certain that no matter what I did, life as I knew it was over.
I had myself in a wheelchair before I even walked out the door of the doctor’s office.
Life as I knew it was over. There is no doubt in my mind now about that…it just wasn’t in the way that I expected. At some point, I realized the negativity I was feeling and perpetuating was doing so much more harm to me than good. And so much of the MS community can seem filled with negativity. When we are faced with challenges, it has become so easy to get stuck. To see other’s challenges through a computer screen and determine they will absolutely be your own. I beg of you: Please do not put yourself in places where you are not. Don’t let google tell you what your fate is, and don’t let the scary stuff let you lock out the world. MS is a nasty disease, there is no doubt about that. I have actively made the choice to approach every day of my life with optimism and treat myself with compassion. This summer, on a beautiful day, I stood at the base of the Brooklyn Bridge and thought “Man, I am so lucky that I can walk.” That thought almost brought me to tears- it has provided me with a level of gratitude for so many things I may have otherwise overlooked.
I am lucky that I trusted my body enough to fight because I knew there was more going on than the doctors initially thought. I am responding well to medication, and I just had my second set of stable MRIs in December. Some of the lesions on my brain have even SHRUNK. That isn’t “supposed” to happen. But if I believed what any internet search told me? I’d still be crying in a corner- and my life really would have ended.
It took time, and asking for help, and accepting support. Some days, it was really hard to decide that I was going to be happy despite the unfair cards I was dealt and what could potentially go wrong. I lost sight of myself being too focused on “not caring”, and struggling, on top of learning what my new limits might be.
My limits now? I’m pretty sure I don’t have them, and if I do, I rarely consider them. Last year, I started working with a trainer, and I’m lifting heavier than a lot of her clients. I try to talk about my MS whenever I can, because I think it’s a gift that I was given to bring positivity and light to something that affects so many people, but is so scary when all you see about it is negativity. If I could go back and change my diagnosis, I’m not sure I would. It changed me. But I’m a better person because of it. I love my WHOLE life, and MS is a part of that. In some ways, I think it gave me a better life.
I’m gonna fight like hell to stay out of that damn wheelchair, but if I ever need one? You’d better believe it will be so pink and sparkly you will see me shining from a mile away.”
Darrah Mugrauer is an Experiential Learning Advisor at Delaware Valley University, as well as a RYT-200 Yoga instructor. She lives in Bucks County, PA.