My multiple sclerosis diagnosis took multiple years. It wasn’t a quick affair. Years separated early attacks, including five years between a case of temporary blindness from optic neuritis and the loss of the use of my left hand and arm which finally led to a diagnosis. During those years, my life was evolving as well.
Before MS, I was actively building a career as a freelance musician in the Washington, D.C., area. At one point, I was teaching a weekly schedule of 44 private students while also performing in at least two or three concerts each month. The demand upon my time and energy was tremendous.
Since MS, I have become a wife, writer, patient advocate, speaker, consultant, moderator, medical reviewer, and new Bike MS participant. I will always be a musician and still teach private lessons in my home studio. My schedule is just as busy as before, although I am engaged in different activities.
What I miss most:
I miss the tremendous sensation of the sound waves produced by 100 other musicians on a symphony stage traveling through my body during a performance. The joy of listening to perfect harmony and stylistic precision up close and personal. The mix of overtones in the ears that stimulate the brain in a most satisfying way. There is nothing quite like it.
Now, I have difficulty with sudden sounds that feel like an ice pick to the brain.
Separation of work and home
I miss that satisfying feeling of coming home after a long day of lessons and/or rehearsals to take my shoes off, sit on the couch, and chill with some late night television. With clearly defined boundaries, both physical and mental, of what is work and what is not work, it is nice to feel the separation between activities.
Now, I work from home. As a writer and community moderator, I can be “at work” 24 hours a day, anytime of the day. I find myself with my laptop computer in my recliner toggling between projects for hours at a time. And with the potential cognitive problems associated with MS, it becomes difficult to stay focused on any one project.
Hiking and crunching leaves
As a graduate student, I lived not far from beautiful Brown County State Park in Indiana. Hiking was particularly fun during the autumn, when leaves of many colors covered the ground. The combined sound of rustling leaves in the trees and boots sweeping through blankets of leaves on the trail was particularly satisfying on a cool, crisp morning.
Now, I need to be able to see any obstacles on the ground or risk catching my toes on the tiniest of surface imperfections. Tripping on air has become one of my special talents since living with MS has impacted sensation in my feet. Walking on any path that is covered with leaves, stones, or debris poses an extreme tripping hazard.
What I enjoy now:
But not everything is lost. Since developing MS, I have discovered talents that I didn’t know that I had. I have made friends from around the world who understand the bizarre nature of this disease. I’ve developed new passions and had wonderful adventures.
Most important, I’ve discovered that I’m more resourceful and adaptable than I knew.
What do you miss about your pre-MS life? Or what have you learned about yourself since diagnosis? Please share your story on our Facebook page. We’d love to have you be part of our growing community.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.