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» LymeNet Flash » Questions and Discussion » General Support » So, I have decided to write a book, and need lots of input! Thanks.

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Author Topic: So, I have decided to write a book, and need lots of input! Thanks.
LymeNet Contributor
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So, as many of you know, I was in Russia last year teaching English (So that I would have experience on my resume when I was done with College).
I ended up with Lyme in Russia. I only have 4 semesters left of college, and just recently turned 20.

Its been a long road of ups and downs of faith,hope, health( Well, all of you who have lyme understand).

I keep telling myself that it would be cool to write a book about this, and write about medical things such as lyme and etc. It didn't really hit me until today.

It makes me laugh that now that I am sick, my friends and co-workers come to me and ask if I know anything about this disease or that disease.
It makes me feel good that they can come to be for information (Sad that I know all this medical at 20 and going into Early childhood instead of Nursing like I was going too!)

Anyways, I need ideas for chapter topics and people's personal experiences. Great Quotes I can open chapters with. Things like that.

I just need a lot of input so I can get this ball rolling! Thanks.

Oh and the title I have decided is:
The Path Less Traveled.


Stephanie, University Student.

Ehrlichia [POSITIVE]
IGG/IGM AB [H] 1.49
indexLyme AB interp. EIA [A] POSITIVE
Lyme IGM WB interp. [A] [PRESENT]

Posts: 145 | From Idaho | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
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Just keep asking yourself that and the answers will come. If they are strong enough, you can build it from there.

Why? Keep going back to that. Why? Be as deep down honest as you can.

It's noble to want to write a resource book but, in all kindness, be sure to read ALL resources already out there. Another one may not be necessary. It may. But until you read everything on the market, you won't know - or figure out how to make yours different and useful.

It may sound cool but writing a book is a tremendous amount of work and a 24-hour job that pays very little. It can gobble up time you'd be spending on getting your degree. And it can take away from your own healing path - you need to get well first. But, as you go along, keep a journal.

It's best to first read all other lyme books that are published so you have an idea of what niche you would be filling, what need you would be serving beyond what's already been done.

As you read all the other books on the market, ask yourself, what is missing. And do you have the credentials to write the kind of book you envision. If you don't, who does? Get them to write it and you add your own unique part.

Also take into account ALL the professional lyme websites. Quite frankly, I can already find what I want on the ILADS, LDA, CALDA sites (their seminar DVDs),, and a few other sites their stature (including LymeNet's archives). Also consider sites for Turn the Corner Foundation and Time for Lyme, and the best professional blog of all, LymeMD (although he no longer writes there).

And sites for other chronic infections are also goldmines, such as: Nicholson's mycoplasma site; Cpn's ; and that for the HHV-6 Foundation.

With the advent of XMRV (HGRV) we may see a very important new chapter but the science is still just coming to light on that. It may change everything. Or not. But keep an eye on that.

So much is already out there, both on sites and in books. And, no offense, but I always want to first read from the main researcher or from a doctor/author who has years of experience with the subject. I want to go to the top source if I'm looking for medical detail.

So, it brings you back to questions of purpose and content.

Often, a writer wants to save the day. Remember that pointing people in the right direction may be all that is needed. You don't have to reinvent the wheel.

If this is out of need or desire to express what YOU are going through, that would be very different book. There are books out there already highlighting the patient's perspective (see first Rita Stanley's book but there are others, too). This will give you a good foundation.

Take some time to get a feel for all this, start small. Writers don't usually start with a book but write a book after years of articles. You could start with an article for a class project.

You might also gain benefit from discussing this with a LL counselor. They can be of tremendous help for you getting to the underlying reason you WANT to write. That will add clarity that will serve you, perhaps, for a whole career (which may turn out to be writing or something else entirely).

Still, please take into account your energy level and your study requirements. Your responsibility is to your health and to your education right now.

With advanced neuroborreliosis, bartonella and ehrlichia, taking into account delayed treatment that started just months ago, there's still a long way to go with treatment, yet, this can be a good vantage point to start with journaling.

Maybe writing a few pages a day as a journal will be a good start that will fit into your free time. Starting with journal writing is a fabulous way to get the juices flowing and see what comes from that. It may take a direction of its own.

Talk to a professor of journalism. I'm sure one of faculty would be glad to discuss this with you. Realize, though, that it will not likely be a big money maker. Yet, if very unique and also still cross-purposed, it could go far.

Figure out how you will document facts and how you will obtain permission to include others' research - you would need legal release forms and you'd need to be clear on the laws of journalism and publishing.

And, here I have to point out that the title (while cute) would probably not be allowed by copyright attorneys. "The Path Less Traveled" would likely be found too similar to Peck's "The Road Less Traveled."

You requested quotes. Even with attribution, those may require permission.

Copyright law is one course that is essential. That, or an excellent attorney to guide you. Publishers have attorneys on staff but it's expected that only one or two questions per book be fielded by the attorney.

Going back to basics with the meat of a work, the journalism professor will be helpful, regardless of the direction or purpose. But, you can't possibly learn it all in just a few coffee chats.

If you are not doing so already, sounds like you might like to take some journalism classes. You might even ask if there is a medical journalism program.

Such courses would be a great place to get the fundamentals and have feedback on your project.

Ninety percent of writing is the research and of that, ninety percent is often not even used. It's tossed out in the rough drafts or was simply required to have gained an adequate understanding to be able put that top ten percent to paper.

Even regarding the personal experience kind of writing, ninety percent is what's known as "therapy writing" and that, too, is tossed out as the gems finally come to light after much work. Science still has to lay the foundation, even for experience writing when a medical condition is at center point.

Now, if you want to move over to fiction, you have some leeway. Some. Much fiction still revolves around solid research.

Experiment with all the different styles and with different topics. Starting with a course on essay writing might be a good way to chart your course.

I highly suggest reading Floyd Skloot - he's a superb writer. He has some essays and one book about his personal experience with a strange and life-changing neurological illness (similar to ours) but his other books don't dwell on that. He's on the "Must Read" list for sure.

One crucial point: do you want your life to be all about TBD (tick-borne disease). Sure, it's there all the time, but do you REALLY want to immerse yourself into TBD as a job (and writing a book is a job)? It may impede your ability to heal.

Skloot's writing shows that an author can express what is going on, explore that a bit, and then go beyond that to a whole new place.

Good luck with your process, whatever direction that takes.

[ 09-10-2010, 07:38 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
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Hey Stephanie,

Keebler has some good thoughts.

I am a songwriter. I started writing songs while I had CFS-Lyme. It does take some effort, so if you do it, make sure you get enough rest and time for your treatments and for your body to heal.

If you go for it, getting feedback on your book early and often is probably a very good idea. It worked for me with my songwriting. Not always easy to take the criticism and re-write, but in the end it is worth it.

Wow, books are so long .. I couldn't do it with my energy level .. songs are about all I can do.

Good Luck.

Dean Brantley Taylor

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A book that isn't currently established among the Lyme Community is

Lyme Caregivers: The Caregiver Syndrome.

The amount of stress and burden that is placed on families, and especially parents, of a patient with debilitating health problems is immense.

That's a topic worth investigating.

I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
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Ive kept a journal since 5th grade lol. I get a new one every year. I figured I could use it to help me write.

Yeah, I know its time consuming. I think I might just write a book on my story. Then add bits of pieces of medical information about lyme and coinfections here and there.

Stephanie, University Student.

Ehrlichia [POSITIVE]
IGG/IGM AB [H] 1.49
indexLyme AB interp. EIA [A] POSITIVE
Lyme IGM WB interp. [A] [PRESENT]

Posts: 145 | From Idaho | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
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In addition to the books detailing others' paths with medical ordeals (including lyme) - or as an aside for a while - you might want to start reading all the biographies you can find.

Then, compare the biographical style with autobiographies. Start with a biography of someone whom you admire. Then, see if they have written an autobiography.

You might then take a look at the book reviews for those books. The New York Times Book Review is just one place to begin.

I actually enjoy reading biographies (and some autobiographies) better than any other style book. I hope you enjoy studying this style of writing. There may be a class on campus that delves into this genre. Here's just one place you could begin:


Anatomy of an Illness as Perceived by the Patient - by Norman Cousins


A sketch of his path that led to the writing of that book, and others:


By Ken Read-Brown


The lifelong concerns of Norman Cousins--writer, editor, citizen diplomat, promoter of holistic healing, and unflagging optimist--were large indeed: world peace, world governance, justice, human freedom, the human impact on the environment, and health and wholeness.

During a lifetime which spanned most of the twentieth century, these central concerns of Cousins's life were also among the most important issues facing the human race.

His primary platform for promoting his views was as editor of Saturday Review for the better part of forty years.

He was also the author of a dozen books and hundreds of essays and editorials.

Besides having been notably active in a variety of peace organizations, he was, in his in later years, on the faculty of the University of California at Los Angeles School of Medicine.

. . . In the 1960s Cousins had an experience that changed his life and that, at the same time, reinforced some of his deepest convictions concerning the nature of the human being.

Stricken with a crippling and life-threatening collagen disease, Cousins followed a regimen of high doses of vitamin C and of positive emotions (including daily doses of belly laughter), all in consultation and partnership with his sometimes skeptical physicians.

He chronicled his recovery in the best-selling Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration, published in 1979.

In the book, generalizing from his own experience and research, he affirmed that "the life force may be the least understood force on earth" and that "human beings are not locked into fixed limitations. The quest for perfectibility is not a presumption or a blasphemy but the highest manifestation of a great design." . . .

. . . When Cousins had a heart attack fifteen years following his earlier illness, he wondered whether it would be possible to recover from two life-threatening conditions in one lifetime, but he was determined that he would.

As he was brought into the hospital on a stretcher following the attack, he sat up and said, "Gentlemen, I want you to know that you're looking at the darnedest healing machine that's ever been wheeled into this hospital."

Once again Cousins recovered, and once again he chronicled his experience in a book, The Healing Heart: Antidotes to Panic and Helplessness. . . .

. . . Yet his concern, as he wrote in The Healing Heart, was "that everyone's health--including that of the next generation--may depend more on the health of society and the healing of nations than on the conquest of disease." . . .

. . . Cousins's own words, from his 1980 book Human Options: An Autobiographical Notebook, perhaps best capture how he strived to live his life:

"I can imagine no greater satisfaction for a person, in looking back on his life and work, than to have been able to give some people, however few, a feeling of genuine pride in belonging to the human species and, beyond that, a zestful yen to justify that pride."

[ 09-12-2010, 04:56 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator

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