Friday, July 17, 2009

Living with MS is a story of families

“The worst thing that happened during my teenage years was my mother becoming ill. She was diagnosed with Multiple Sclerosis … when I was fifteen. … it was a terrible shock to hear that she had an incurable illness, but even then, I did not fully realise what the diagnosis might mean.”

Anne Rowling died at age 45 after a 10-year battle against multiple sclerosis.

"I was writing Harry Potter at the moment my mother died. I had never told her about Harry." shares author JK Rowling.

Sitting in a movie theatre viewing the midnight release of the latest Harry Potter movie I reflected on how Rowling’s magical storytelling has intertwined our story.

It was 10 years ago “Harry Potter” first came home with us from a book store outing. It was the last Harry Potter book we would ever buy only one copy of.

For Megan and me, midnight book releases over the last decade have kept us awake until our two copies were read cover to cover. Talking book versions for Patti have never captured her attention and midnight anything is not for her.

Living with MS as a family is about more than Multiple Sclerosis itself. Anxiety about family worms its way into your head.

What effect does a parent with MS have on a child? In 1989 there was NOTHING good available, factually or anecdotally.

While we searched in vain, elsewhere Jo Rowling was a research assistant for Amnesty International. Michelle Robinson was a summer associate at a Chicago law firm. Both would shortly loose a parent to Multiple Sclerosis.

“I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made …” Michelle (Robinson) Obama

"Barely a day goes by when I do not think of her. There would be so much to tell her, impossibly much. … Support for people living with MS is as woefully inadequate today as it was (then). She would have found that difficult to understand, and so do I.” JK Rowling

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...


  1. as sad as it is, multiple sclerosis is nondiscriminatory; takes victims from every walk of life; writers, president wife wanna be's, average dad and daughter in Pennsylvania who share a love for a wizard named Harry. sad to say you are not alone; sorry that you are not alone, sorry its not a selective disease but one that enjoys the motto "winner take all"; unfortunately, it "wins" at such high stakes for all involved


  2. My husband was diagnosed in 1990. Our son was born in 1993. Our son, like your daughter, has been witness to the gradual toll MS takes on. Our son is now 15, soon to be 16. Our once outgoing happy child is now quiet and does not invite friends to our house anymore. I wish this wasn't the case ....


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