A BOOK BORN OF QUESTIONS –
Developing Lighting Up a Hidden World: CFS and ME
“How can that be?” “Why is there no effective treatment?”
Questions spurred each element of this book – from my poem/song/story, to the side notes and references filling the gaps, to the amazing illustrations, to the extraordinary stories from the ME/CFS community in Section 2, to the “How to Help” section and finally, to the Appendices.
It started in 2009 with me reciting some of my symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the way to a massage appointment on a cloudy day when my symptoms were elevated largely due to a sudden weather change. The tune was, ironically, from “These are a Few of My Favorite Things” sung by actress Julie Andrews in The Sound of Music. The song grew from a few symptoms to my 25-year ME/CFS story over the next months. I sang or recited bits to anyone who would listen.
And then the questions began...lots of them...from me and from others. Sometimes the questions were from a fellow ME/CFSer, sometimes from a healthy friend or family member, and often from those in the general public who became interested in this story through connections in my everyday life.
People would read or hear my poem/story and ask: How can that be? Why do you not have effective treatments? Where are the doctors and specialists who deal with your condition? Why don’t we know about this? How many people are affected and where are they?
Gradually, I answered those questions and many more using the knowledge I had at the time, and new research and resources as they became available.
Then I thought illustrations would be a great way to communicate the emotions and situations which many of us are going through. My brother-in-law had just finished a children’s book and the illustrator was Simon Glassman in Alberta. I connected with him, and slowly, as the concepts grew, we created the illustrations, with me directing and Simon feeding back with his very cool skills as an artist.
Because professionals and others were also seeing the book while it formed, they would ask more scientific and research oriented questions.....So then off we went to validate what we were quoting and referring to in the field.
Section 3: “How to Help” was created in pieces and with a lot of input from Doris Fleck and Maureen MacQuarrie – fellow patients and volunteers for the book. Now that we had finished writing about the past, the goal became to focus on solutions and the future.
Because I had been ill for 20 years before I started writing, and had been following the ME/CFS world with the hope of resolution, it was not hard to remember the pieces of research and activism which struck me as significant. From there, others in the ME/CFS community helped to update the information so that the book stayed current with what was happening in research, funding, and politics. It seemed we would never finish Lighting Up a Hidden World because so much was evolving in the ME/CFS landscape that it was hard to feel complete. Up to the last minute, we were adding stories from other people with ME/CFS, new advocacy actions and resources. At some point, we had to decide to stop and leave the rest for a future story.
The Appendices were a given: I wanted to share the most important documents that had made a difference in my life and in the lives of many others – patients and professionals alike. Some of these documents required a paid-for permission in order to be included in this publishing process, while other authors volunteered their information.
Maybe it is a good thing to have a book project that takes so long: Many people with important opinions and information get to be included, and that takes time, patience, and energy. I always felt, however, that the result would be better with all that collaboration.
Almost seven years later – one step at a time – and thousands of hours (many of them by volunteers) and yes, many dollars too, we put together something which would update any new person with a diagnosis of ME or CFS, remind those who have been around for a while of the resources that they may have forgotten or may not be aware of, as well as introduce the general public to this hidden world.
It was a very interesting process indeed, and one I never dreamt of while singing that first verse on the way to a massage appointment.
Questions spurred each element of this book – from my poem/song/story, to the side notes and references filling the gaps, to the amazing illustrations, to the extraordinary stories from the ME/CFS community in Section 2, to the “How to Help” section and finally, to the Appendices.
It started in 2009 with me reciting some of my symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the way to a massage appointment on a cloudy day when my symptoms were elevated largely due to a sudden weather change. The tune was, ironically, from “These are a Few of My Favorite Things” sung by actress Julie Andrews in The Sound of Music. The song grew from a few symptoms to my 25-year ME/CFS story over the next months. I sang or recited bits to anyone who would listen.
And then the questions began...lots of them...from me and from others. Sometimes the questions were from a fellow ME/CFSer, sometimes from a healthy friend or family member, and often from those in the general public who became interested in this story through connections in my everyday life.
People would read or hear my poem/story and ask: How can that be? Why do you not have effective treatments? Where are the doctors and specialists who deal with your condition? Why don’t we know about this? How many people are affected and where are they?
Gradually, I answered those questions and many more using the knowledge I had at the time, and new research and resources as they became available.
Then I thought illustrations would be a great way to communicate the emotions and situations which many of us are going through. My brother-in-law had just finished a children’s book and the illustrator was Simon Glassman in Alberta. I connected with him, and slowly, as the concepts grew, we created the illustrations, with me directing and Simon feeding back with his very cool skills as an artist.
Because professionals and others were also seeing the book while it formed, they would ask more scientific and research oriented questions.....So then off we went to validate what we were quoting and referring to in the field.
Section 3: “How to Help” was created in pieces and with a lot of input from Doris Fleck and Maureen MacQuarrie – fellow patients and volunteers for the book. Now that we had finished writing about the past, the goal became to focus on solutions and the future.
Because I had been ill for 20 years before I started writing, and had been following the ME/CFS world with the hope of resolution, it was not hard to remember the pieces of research and activism which struck me as significant. From there, others in the ME/CFS community helped to update the information so that the book stayed current with what was happening in research, funding, and politics. It seemed we would never finish Lighting Up a Hidden World because so much was evolving in the ME/CFS landscape that it was hard to feel complete. Up to the last minute, we were adding stories from other people with ME/CFS, new advocacy actions and resources. At some point, we had to decide to stop and leave the rest for a future story.
The Appendices were a given: I wanted to share the most important documents that had made a difference in my life and in the lives of many others – patients and professionals alike. Some of these documents required a paid-for permission in order to be included in this publishing process, while other authors volunteered their information.
Maybe it is a good thing to have a book project that takes so long: Many people with important opinions and information get to be included, and that takes time, patience, and energy. I always felt, however, that the result would be better with all that collaboration.
Almost seven years later – one step at a time – and thousands of hours (many of them by volunteers) and yes, many dollars too, we put together something which would update any new person with a diagnosis of ME or CFS, remind those who have been around for a while of the resources that they may have forgotten or may not be aware of, as well as introduce the general public to this hidden world.
It was a very interesting process indeed, and one I never dreamt of while singing that first verse on the way to a massage appointment.