Fifteen years ago, I became blind. In under two days, I went from ‘something is just not right’ to ‘all I can see is solid gray.’ It was terribly frightening and I wasn’t sure what to expect for the future.
One thing I knew at that time was that I did not have multiple sclerosis because my brain was clear of ‘white spots’ or lesions. I also didn’t have a brain tumor. I could walk just fine, so I probably didn’t have neuromyelitis optica (NMO) either. This was before the blood test was available to look for NMO markers to make diagnosis easier, but I was to return to the neuro-opthalmologist if I had trouble.
It was a busy March concert season with performances and rehearsals scheduled on more days than not. My calendar was a mess of scribbled notes regarding where and when I had to be in specific locations for work. There was the Baltimore Opera, Fairfax Symphony, National Gallery of Art Orchestra, and other freelance gigs. All of that on top of the 30+ private music students I had at the time.
I was busy, to say the least, and didn’t have time to mess with physical weakness or logistical limitations.
Figuring out how to get around to where I needed to be took a little bit of time since I wasn’t really safe to drive long distances. I felt like I could manage driving the two miles it took to go from my apartment to the school where I taught and I arranged to carpool to rehearsals and performances.
The same day I reached complete blindness in the right eye, I was almost late to a rehearsal in Baltimore. I had been waiting in line for much too long to have blood drawn for testing to help determine what might be going on. I apologized to the contractor for my almost tardiness. In professional settings, if you are not 20-30 minutes early, you are late
Did I explain what was going on? No. I kept quiet about my struggles except to my new carpool buddy and one fellow horn player. My colleagues and students were left in the dark about my new challenges. But looking back, I must have been a mess with steroid poof, dark eyes, fatigue, bumping into things, etc.
When I talked with my friend, the horn player, she told me that her mother has lived with MS for years. Bless her heart, my friend did not tell me anything which would have scared the living daylights out of me - although I wasn’t seeing half of daylight anyhow - when she could have. She spoke with the wisdom of someone who has loved someone with MS for many years. Thank you, Jennifer.
The official diagnosis
After my vision returned, I went on with life blissfully for several years. But when I began to feel numbness and tingling in my left hand and arm, and eventually lost use of the same, I knew that my luck had run out. I had not managed to escape the grips of multiple sclerosis afterall.
Ten years ago when I was once again referred for MRI scans, I knew what they would show. I knew that this time there would be ‘white spots’ or lesions. This time the answer would be clear. It was, but that didn’t prevent me from needing a spinal tab and further MRI scans. All told, it still took another five months before the news became official - You have MS.
So now that I’ve been living with MS, officially, for ten years, I try to speak with the wisdom of my friend Jennifer. It’s good to share information and support with those who are facing diagnosis and an uncertain future. It’s also good to simply offer an empathic ear to listen to the fears and concerns of others.
Even those of us who have lived with this disease for many years still do not know what the future holds for us. Right now, my future looks good. I’ve found a treatment regimen which works and keeps me functioning at a high level. I will never be able to do many of the things I once did, but that’s okay. I’m doing many other things which I never dreamed of through advocacy and outreach.
Life is different than I had dreamed and was working towards 15 years ago. But I bet that is true for anyone, regardless of disease. Life is an evolving experience and we are here to discover a path and live it to its fullest.
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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.