What MS Means to Me

One thing I’ve learned from my journey is that each person with MS has their own, unique story. For me, it took 13 years of debilitating symptoms, countless doctors’ appointments, traveling over 1,100 miles to a world-renowned diagnostic center, then finding a local neurologist who finally ordered a lumbar puncture to get my diagnosis. It then took another three years for other neurologists to agree with my MS diagnosis. It has been a dark, traumatic road leading to this point, and I am determined to spread MS awareness.

Here is what MS means to me:

• MS means being unable to get up and go. It means legs that feel shaky and unable to support my slim frame. MS means shaky hands that drop things and struggle to maneuver tiny objects. It means “taking a walk” may lead me to the end of my driveway and back. MS means my vision is often shaky, making objects appear to be vibrating. It means restless sleep and fatigue that no words can fully describe. MS means missing out on some of my children’s extracurricular activities and school events. It means that master’s degree I worked so hard to earn – during a time when my symptoms had just begun – will sit there waiting for me; for a time when I feel strong enough to return to it. MS means difficulty driving far because my foot struggles to hold the pedal. It means being at risk for severe infections because my treatment kills an entire class of B cells. MS means accepting that there are many things I cannot do anymore. It means that my physical abilities in the future are unknown.
• It’s true that MS has changed my life and brought days where I can’t imagine pushing on for even another moment. But it has also changed my life in ways that bring happiness and gratitude. MS means finding happiness in the mundane wonders that were once taken for granted. It means friendships will fade, revealing the ones that are worth your time and energy. MS means teaching my children compassion and acceptance through firsthand experience. It means having something worth fighting for. MS means having hope and excitement for every clinical study that may further disease understanding and treatment outcomes. My life path may not provide an easy road ahead, but I’ve come this far, and I don’t plan on giving up now. 

And please remember, MS is a personal experience; it is not a cookie cutter disease. If you know someone with MS, ask them what this disease means for them.