Book Cover
I knew almost from the beginning that I wanted the cover to depict shining a light on the hidden world of ME and CFS and soon figured out that there was no better way than using a candle and the color blue – which tied it to ME and CFS awareness. The candle ended up being a double bonus as candles also give off heat – not just light. So besides Lighting Up a Hidden World, it represents burning away the stigma and the marginalization that patients with the illness have faced for years.
The scorched background can be interpreted in a few ways and I am sure each person may see something different or give it a different meaning. One interpretation is the heat burning away the dark past to make way for something new. For me personally, it represents burning away the illness itself, leaving me whole and healthy.
The Candle
Candles represent hope and this is so needed in our off-the-grid illnesses. As well, Florence Nightingale (the Lady with the Lamp) was an inspiration for using the candle as she is so closely connected with our May 12th awareness day. May 12th has been ME/CFS and FM Awareness Day for almost twenty-five years. The idea originated in 1993 with the late Tom Hennessy, an American patient-activist. May 12th was chosen because it is Florence Nightingale's birthday. She was the famous English army nurse from the mid-1800's that many of us learned about as schoolchildren. (See Illustration 3 in the book which is entitled "Sudden Onset - Finding a Hidden World" for a representation of her lamp and dropping into a world unknown.)
Florence Nightingale became chronically ill in her thirties with an illness resembling ME/CFS. Her poor health did not prevent her from being a tireless crusader for improving sanitary medical conditions and advancing the profession of nursing. She carried her lamp from soldier to soldier so that she could care for them, and in many ways, I felt I was holding her light on the stories of others and on my own experience.
The Color
Another influence for the cover is the indigo blue color which represents the ME/CFS awareness ribbon. Most people are not aware there is a representing color for the illness.
The scorched background can be interpreted in a few ways and I am sure each person may see something different or give it a different meaning. One interpretation is the heat burning away the dark past to make way for something new. For me personally, it represents burning away the illness itself, leaving me whole and healthy.
The Candle
Candles represent hope and this is so needed in our off-the-grid illnesses. As well, Florence Nightingale (the Lady with the Lamp) was an inspiration for using the candle as she is so closely connected with our May 12th awareness day. May 12th has been ME/CFS and FM Awareness Day for almost twenty-five years. The idea originated in 1993 with the late Tom Hennessy, an American patient-activist. May 12th was chosen because it is Florence Nightingale's birthday. She was the famous English army nurse from the mid-1800's that many of us learned about as schoolchildren. (See Illustration 3 in the book which is entitled "Sudden Onset - Finding a Hidden World" for a representation of her lamp and dropping into a world unknown.)
Florence Nightingale became chronically ill in her thirties with an illness resembling ME/CFS. Her poor health did not prevent her from being a tireless crusader for improving sanitary medical conditions and advancing the profession of nursing. She carried her lamp from soldier to soldier so that she could care for them, and in many ways, I felt I was holding her light on the stories of others and on my own experience.
The Color
Another influence for the cover is the indigo blue color which represents the ME/CFS awareness ribbon. Most people are not aware there is a representing color for the illness.
Illustrations
I am so proud of the illustrations that Simon Glassman and I created for the book. One unique feature is that there is one common female character in each drawing and it is her perspective that the picture illustrates.
We decided to use faceless characters for a couple reasons: One was that the disease wipes away so much of the person that they can become almost invisible. The other is that the illness of ME/CFS, as well as the experiences of living with it, can happen to anybody so we felt the faceless characters could represent anyone.
We decided to use faceless characters for a couple reasons: One was that the disease wipes away so much of the person that they can become almost invisible. The other is that the illness of ME/CFS, as well as the experiences of living with it, can happen to anybody so we felt the faceless characters could represent anyone.
The Cadence
For the first few years, I had underscores on the syllables of the words to the song/poem so that I, or others, could sing it or read it with ease. It was very effective. Over time, with an editor's advice – and to simplify the text – the underscores were removed; but I thought I would share an example if you are interested and need help finding the rhythm. Once you get the rhythm, it can be quite fun either reciting or singing it. I've done both. Of course it helps if you are a "Sound of Music" buff and have sung along with Julie Andrews and her Favorite Things.
Chinooks and low clouds and changes
in pressure,
Full moons and melting and things you
can’t measure,
Perfumes and diesel and food allergies,
These are the things that bring me to
my knees.
Poor memory, no focus, and wrong
word retrieval,
Numbness and tingling, Bell’s palsy –
sounds evil.
Sleep deprivation and low energies,
Blood pressure drops that bring me to
my knees.
…When I stand up…
…When I sit down…
…When I walk a while…
Symptoms galore visit all of my self,
Leaving me slumped in a pile.
Chinooks and low clouds and changes
in pressure,
Full moons and melting and things you
can’t measure,
Perfumes and diesel and food allergies,
These are the things that bring me to
my knees.
Poor memory, no focus, and wrong
word retrieval,
Numbness and tingling, Bell’s palsy –
sounds evil.
Sleep deprivation and low energies,
Blood pressure drops that bring me to
my knees.
…When I stand up…
…When I sit down…
…When I walk a while…
Symptoms galore visit all of my self,
Leaving me slumped in a pile.
