Fw: An NF2 Story

[Guest guest]

I had written to Annette and told her I thought she should write a book

about the relationship between she and Jordan, how NF2 made Jordan blind and

deaf, yet how she still contributed; How Jordan was important in starting

this on line group; this is the reply I got from Annette; I think we need to

encourage this, and I would appreciate your suggestions; I include her

address so you can send a copy of your suggestion/s direct to Annette.

Personally, I think the book should come from the angle of the relationship

between she and Jordan, and of course it would include talk about NF2, etc.

However I think a book with the topic of NF2 would only appeal to a narrow

market, whereas a book upon the personal relationship, how much was

required of Annette at the end and yet how wonderfully she and Jordan

handled it; I think of the lady on the list who has an 18 yr old dtr with

NF2 who tried to commit suicide, as she feels life ahead will be terrible;

Jordan lived with pain, all the difficulties there could be, and yet Jordan

managed to contribute the whole time; her life definitely had meaning; and

that is another angle to the book; your life can have meaning, no matter

what your limitations, if you MAKE it have meaning. Marie

An NF2 Story

>Dear Marie,

>

>You do me great honor by assuming I have the wherewithal to write a book!

>Actually, I had to smile because it reminded me of a comment a friend made

>many, many years ago when we were visiting an art museum.

>

>As we were gazing upon an abstract painting to which I was drawn, I offered

>that, " This is a work that appears to be without discipline or focus. " My

>friend replied, " Annette, you could do that. " I wasn't sure whether to take

>that as a compliment or not!

>

>I do not take the NF2 Crew's suggestion lightly. Is there no book out there

>that describes NF2 and discusses the progression and ramifications of the

>disease in a format that is marketable? I know there are numerous journal

>articles covering research aspects but these are not exactly your " best

>sellers! " Right?

>

>I must say that I am intrigued by the suggestion of the Crew. I am

wondering

>if you all have thoughts about the direction in which the subject could be

>approached, i.e., fiction, true story, personal letters, straight forward

>with facts, etc.

>

>For me the bottom line is this: What would Jordan want me to do? I am fond

of

> " crystallization " and how things reveal themselves. That being said, I

remain

>open and excited with the possibilities. I wait to hear from you AND from

>Jordan.

>

>Love, Annette

>

>

>