The book will feature stories from real patients about Lyme disease. I would appreciate if the stories are no longer that 3000 words each but I do understand that may not be possible with people who have been sick for many many years. I will collect all stories I receive until July 31, 2010. If I only receive a small number of stories by that time I will extend the period. If I receive an overwhelming amount of stories I will include as many as I can fit in the book. I want this book to be for people to learn about Lyme disease and what Lyme patients go through. Some proceeds of this book will go directly to helping people get treatment who can't afford it. Since Lyme disease is very expensive I think this is a great way for at least 50% of the proceeds to be spent.
Please make sure you keep a copy of your story because I will not be returning any stories because I am hoping there will be a large number. And because I do understand the sensitivity of Lyme disease and insurance companies and doctors you can remain anonymous or you can shout to the world who you are! Please make sure your stories are truthful and real. Also, please include an email address with your submission so that I can contact you, and if you don’t mind a phone number. But there again, I understand the need to remain anonymous in some cases so a phone number is not required.
I will also be collecting quotes from patients. Is there a statement that you have said in this past that just makes someone say “WOW”? Have you made a statement that could sum up your suffering? Anything that you think could be powerful to someone reading this book, anything that would make a non-patient reassess what they know about Lyme disease?
I would also love to interview some Lyme Literate Doctors. This book is not about the controversy over Lyme (although I will include the main points to be remembered by people reading it) so I do not want to interview mainstream doctors. I want to get LLMDs opinions on treatment and the disease itself. If you have a doctor who would be willing to be interviewed please email me their information as well.
And lastly I will be collecting photos. If you would like a photo of yourself included in the book please submit it along with your story. Please only send personal photos that you have taken, please do not send copyrighted photos from a photographer. If you are in the Maryland or Georgia area and would like your photo taken for this book please contact me via email as I have a photographer available in both areas (both Lyme patients).
This book is only going to be as good as the stories I receive and my story is only 1 of thousands.
Important points to remember;
Please do not include Dr.’s names. Please just use my LLMD or my mainstream Dr. This is of course to protect our treating doctors.
If you want to remain anonymous that is fine, but with your submission please include name and email and phone number if you’re ok with that. Also, if you don’t mind please include your state. Please express with your submission if you would like to remain anonymous or which information to include. If you do remain anonymous I would like to put your state after your submission. I want people to know it can happen ANYWHERE!!
Please include in your submission written consent to have your story published in this book and also written understanding that as of right now you will not receive anything in exchange for your story. If we get lucky and this book flies off the shelves I will provide each submitter with a monetary gift and a free copy of the book as well. I just do not want to promise this now as I could not afford to do that without proceeds from book sales. But also remember that at least 50% of the proceeds of this book will be set up in a fund to be donated to patients who need treatment but can’t afford it, we all know how expensive the first appointment can be, let alone treatment itself.
Please keep in mind I would like to have submissions to me by July 31, 2010. The sooner I have a finished product to present to a publisher, the sooner this book can help people receive treatment.
Please only send your personal original story, please do not send someone else’s unless they ask you to write it for them because of their physical limitations. And then please include your information and the story tellers information and again whether you and them want to remain anonymous.
Please do not send a story that has previously been published.
I will also accept poems or short sayings, quotes, stories, but again only your own personal original story. I need written permission from the person who the story belongs to in order to publish it in the book.
Please help me make this book a success so we can help Lyme Patients afford the treatment they so desperately need, the sooner the better!
I know other books have been done to include patient’s stories but we could always use another one, and the other books do not use some of the proceeds to directly help Lyme patients.
Email stories to lymebook@yahoo.com
Hello Brittany
ReplyDeletethats quite an undertaking you are planning!! I hope that youll be using a commercial publisher who will help you with editing and verifying information!! When you produce a book expecting others to read, about an illness filled with hype and scammers its very important IMO to make sure the information you provide is verified (i.e. not someone selling some fake cure posing a patient who was cured with it wanting you to put his "story" in your "book"), and info must be valid as well as reliable.
Self publishing and using presses like Biomed are not only unreliable but make it likely that few will buy or read it since many are becoming aware of the problems with this.
Also it may help to get a lawyer and place in writing not only exactly what percent of income will be donated but exactly to WHOM--which group(s). Ive been working as a patient advocacy educator in Lyme many years and frankly many of us wouldnt want our money to be donated to the many various scammers and predators who have decided to target Lyme patients!
I hope you also realize that what you are doing is NOT "writing a book" but EDITING, creating an anthology--youre simply collecting the work product of others--THEIR stories, THEIR poems, etc--and Im sure many wouldnt want YOU to change THEIR words!!
A few other Lyme patients have tried this, but when people realized that they were giving the book "author" their own work so he/she can make money off of it--they were understandably miffed.
IF 100% of the NET proceeds went to REPUTABLE Lyme groups, maybe more would support this project!!.So deciding which donees would help get you people interested
After all when you blog "I want to write a book" thats NOT the same as "im collecting YOUR words and work and will be selling the resulting book as if I wrote it and a part of the proceeds will be for me" which again, is being an "editor of an anthology" and NOT an "author"but at least itd be more honest
good luck with whichever project you do.
( FYI other books SAY theyre going to use the proceeds to donate and then never DO which is why many wont beleive you---Im NOT accusing you of dishonesty...Im just alerting you to why many who have been scammed...arent going to want to be again!! Besides your book will "directly help Lyme patients"??? even good groups cant guarantee that when they donate monies)
WHY arent you simply writing YOUR story??? then youd be authoring your own book!! although Id still suggest a reputable commercial publisher!!
Hi Brittany
ReplyDeletedont know where my comment went--maybe cyberspace!!
Please realize that asking for others' works (stories, poems etc) is creating an anthology and editing a "book" NOT "authoring" it--why not simply write your own story??
in either case, use a commercial publisher since self publishing and using presses like Biomed will have many avoiding purchasing it given the lack of fact checking and valid reliability of informational content.
Many will try to pose as patients "cured" by some scam in order to advertize it--a commercial publisher would be able to prevent that better than you could on your own!!
Plus many have tried this before--using others' written work product to produce a book and then the patients realized that the "author-editor" is making money off of their work!!and theyre not happy , so perhaps if you donated 100% of the net proceeds and it didnt seem as if youre trying to profit off of another's story/work itd go over better!
as for the declaration that itll help patients?? youd need to get a lawyer and place it in writing exactly what percent of profits and exactly to WHICH groups--after all how does anyone know youll give the money to a reputable group?? or how much you actually make??
again after being in Lyme for MANY more years than you, we are all tired of others profiting off of us.
First try writing your own story and get it published, and then when we see the quality of your work, which publisher has contracted with you, more folks and even Drs would be willing to give you access for future books.
good luck with your project
I am posting for a friend of mine, Helen.
ReplyDeleteGloria,
Much of what you say is true, however we have to take shots and sometimes, even risks, in this crazy underground world of lyme we've been cast into. ... See More
This woman is doing the work and should reap her due rewards - especially if she wants to donate 50% to lyme causes. I see nothing wrong with her keeping 50% for herself. She is the one taking the legal and financial risk, gathering information, editing, finding a publisher, etc.
If someone else wants to do the same, they are more than welcome to do so. But other than the legal snafus that may possibly arise and therefore need to be attended to, I find no fault in someone trying to spread awareness, help othes, and help themselves in the process.
I will point out though that I don't think there is that much money to be made in book sales of this nature. But that's a chance you take in any entrepreneurial endeavor.
I don't mean to be argumentative, but I just don't see a real issue with this as long as she covers her bases, especially with legal issues.