Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Crew, If someone has the mailing address of Jordan Harlow's family, can you please post? Thanks, >---------- >From: Marie Drew >Sent: Thursday, December 21, 2000 12:14 PM >To: 'CREW'; nfinc1@...; NeuroFibromatosis Clinics Association >Cc: Jordan; egreen; Donna Getz; Gail Petito; Brad and na Finch; Meri Garst; frankie >Subject: Fw: An NF2 Story > >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 >> >> >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Crew, If someone has the mailing address of Jordan Harlow's family, can you please post? Thanks, >---------- >From: Marie Drew >Sent: Thursday, December 21, 2000 12:14 PM >To: 'CREW'; nfinc1@...; NeuroFibromatosis Clinics Association >Cc: Jordan; egreen; Donna Getz; Gail Petito; Brad and na Finch; Meri Garst; frankie >Subject: Fw: An NF2 Story > >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 >> >> >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Crew, If someone has the mailing address of Jordan Harlow's family, can you please post? Thanks, >---------- >From: Marie Drew >Sent: Thursday, December 21, 2000 12:14 PM >To: 'CREW'; nfinc1@...; NeuroFibromatosis Clinics Association >Cc: Jordan; egreen; Donna Getz; Gail Petito; Brad and na Finch; Meri Garst; frankie >Subject: Fw: An NF2 Story > >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 >> >> >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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