John’s Story

My name is John and I have NMOSD. Is that all you need to know about me?  No, not at all.  My illness is an important factor in my life, but it doesn’t tell you who I am.

I’m a retired English Teacher.  I am fascinated by words, and by Literature, by the richness and variety of the English Language, and by how our Languages and Dialects are the defining core of who we are.  If you want to know me, talk to me – don’t rely on a blood sample.

I’m a grandparent.  I love to spend time with my three grandchildren, Thomas, 12, Jessica, 10, and Annabelle, 3.  We talk, we play, we learn together, we visit interesting places where we can share the excitement of growing up – though I’m fighting to delay that for all 3 of us!

I aspire to be a musician.  I have played guitar and performed in Pub Bands for most of my life.  Although my NMOSD kept me from performing for some years, I still write and record my own Blues-influenced compositions.  Because my ability to play guitar has severely diminished, I’ve turned to the Blues Harp (as the 10-hole Diatonic Harmonica is popularly known) as a way of inflicting my musical ideas on an unsuspecting world.  I have almost finished recording my fourth album and I like to use my music to help with fund-raising for NMO research.

There’s a lot more I could write about myself without focusing on the fact that I have a rare auto-immune disease.  Does it slow me down?  Yes.  Does it stop me from running around with my grandchildren?  Yes.  Has it given me a variety of unexpected problems to cope with?  Yes.  Did it stop me from fulfilling my ambition to write a book?  Definitely not.

Want to know me?  Talk to me.  Listen to my songs.  Read my ramblings.  Forget the walking stick.