FINALLY WRITING ABOUT M.E. - A NEW BOOK

I have been writing for years. 

I probably started back when I was an earnest teenager wanting to impress literary girls, and I continued into university, producing a poetry collection as part of my final year project. 

Once I started working, I wrote a lot less as I had less time on my hands. Then, when ME hit, I found that I suddenly had lots of time again. When I was able, I began to write again, slowly, tentatively, in fits and starts. 

Writing is one thing that most people with ME can do. It may be slow and painstaking, but if you feel OK for twenty minutes a day then you can manage to put together a few paragraphs. 

Taking it seriously

After a few years, I was lucky enough to get back to a semi-functioning state of health, where I worked part-time but still had a lot of time free, so writing was something that I began to take seriously. I made it part of my daily routine, and tried to get thirty or sixty minutes a day done. 

I began to write novels. I generally failed to finish these novels, getting to about two-thirds of the way through a story and then abandoning them. 

I eventually joined a writing group, which focused my mind and helped me to actually reach the end of a novel. I finally managed to finish one, and then another, and when my health was strong enough, I looked into the self-publishing process. In 2016 I published my first novel. 

It has been an adventure. The novel was set in Lisbon, Portugal, so I went there a couple of times to promote it. It was picked up by a university professor there, who put it on one of his courses as an optional text. Students wrote assignments on the book. 

Never wrote about ME

In all of this, one thing I never did was write about M.E. Or rather, I have had this blog for years, and this was where I did my writing about my ME experience, so perhaps that was enough. 

But there was also the fact that writing for me has been in part a response to having ME, and an attempt to escape a little from this. I didn't write about ME because writing was part of my 'normal' life, a space where I could pretend that I was just a person doing something that everyone else can do. 

My novels explored themes of identity and new chances, relationships and escape, language and culture. I have no doubt that my ME experience informed what I was writing, but I never touched directly on what it was like to live with this condition. 

New book and change

That changed with my new book, which has just been published in e-book form, with the printed version to follow. It has been two years in the making and began with a quote from a linguistics book by Stephen Pinker that I was reading - 

"The verbs be, go, do and have are the most commonly used verbs in most languages - many language scientists believe that the meanings of these verbs - existence, possession, action, motion - are at the core of the meanings of all verbs."

Immediately, I saw the potential for stories. I started writing that very day, and things came together quickly. I wrote about a meditation group and three characters who were trying to live in the moment and just "be". 

I wrote about a travel writer who had itchy feet but had decided to try and settle down. That was the "go" section. 

Then there was the property tycoon who had come from a poor background and who had built up his wealth with some questionable practices. That, obviously, would work for a story connected to the verb "have". 

So a novel exploring these four central verbs; Be Do Go and Have, began to take shape. I had only one verb left though, one that I had been putting off till last - Do. 

The solution was obvious, though I resisted it for a while. Eventually, I began to write about a young woman in her twenties, Kay Noone, who is housebound with ME. In then end, that soon became the easiest section to write. It just came out, and I found that I could write from her perspective without even really trying. 

Kay describes her condition as a "doing allergy". As she says, looking back at her former life, "I did, and now I do not do". What I was exploring through Kay was one of the key frustrations in the life of a person with ME - everyone around you seems to be engaged in a non-stop flurry of action, while you are stalled, limited and generally unable to "do" much.  

The stories develop in a parallel fashion, with characters from one appearing in another, and themes repeated and explored across different narratives. Slowly, the stories draw together towards the end. 

The choice of a person with ME to represent the "do" section of the book soon began to seem natural, but I was only able to write this because I have made a kind of recovery, and am now living a close to normal life. I am not recovered completely, but I am busy and active and working full-time, and engaged in all of this action that I used to wish for and which Kay, in the book, is not able to do. 

I am still a little insecure about my recovery, but it is holding, for now. If I was still in the midst of the frustrating life of limits that I had for so long, I would not have been able to write the ME part of the book. 

ME Novel?

I am reluctant to market this as an ME novel, as this theme is only really one quarter of the whole book. Yet, Kay's story is a central part of the narrative, and I think a lot of people may identify with her experiences. 

That said, the ME community is diverse and not at all homogeneous, and there are people who suffer from ME who would read Kay's version and not identify at all. There may even be some people who are offended by my portrayal of an ME sufferer. I was aware of that as I was writing and was trying to be sensitive to it. However, you cannot represent everyone with a condition where people's experiences are so varied. Kay's story is one story, and is not intended to be the definition of an ME experience. 

I deliberately made the character a young woman, as it seems that about three-quarters of all sufferers are female. Kay's experiences are not really mine, though they are informed by what I went through. As much as my own experience, her characters is influenced by what other people I have read about and talked to have communicated; including Jennifer Brea and No Poster Girl. 

All told, I am pleased with and proud of the book. I am also happy with the Do section; the M.E. section of the book where Kay tells her story. I tried to get inside the mind of someone in that position, and believe that I have succeeded, at least partly. 

If anyone wanted to read a sample, part one of Kay's story is here (there are four parts). The book went up on the Amazon Kindle store this week, and will be available as a printed version in the next couple of weeks. More info on my website here, if you are interested. 

FINALLY WRITING ABOUT M.E. - NEW BOOK.

I have been writing for years. 

I probably started back when I was an earnest teenager wanting to impress literary girls, and I continued into university, producing a poetry collection as part of my final year project. 

Once I started working, I wrote a lot less as I had less time on my hands. Then, when ME hit, I found that I suddenly had lots of time again. When I was able, I began to write again, slowly, tentatively, in fits and starts. 

Writing is one thing that most people with ME can do. It may be slow and painstaking, but if you feel OK for twenty minutes a day then you can manage to put together a few paragraphs. 

Taking it seriously

After a few years, I was lucky enough to get back to a semi-functioning state of health, where I worked part-time but still had a lot of time free, so writing was something that I began to take seriously. I made it part of my daily routine, and tried to get thirty or sixty minutes a day done. 

I began to write novels. I generally failed to finish these novels, getting to about two-thirds of the way through a story and then abandoning them. 

I eventually joined a writing group, which focused my mind and helped me to actually reach the end of a novel. I finally managed to finish one, and then another, and when my health was strong enough, I looked into the self-publishing process. In 2016 I published my first novel. 

It has been an adventure. The novel was set in Lisbon, Portugal, so I went there a couple of times to promote it. It was picked up by a university professor there, who put it on one of his courses as an optional text. Students wrote assignments on the book. 

Never wrote about ME

In all of this, one thing I never did was write about M.E. Or rather, I have had this blog for years, and this was where I did my writing about my ME experience, so perhaps that was enough. 

But there was also the fact that writing for me has been in part a response to having ME, and an attempt to escape a little from this. I didn't write about ME because writing was part of my 'normal' life, a space where I could pretend that I was just a person doing something that everyone else can do. 

My novels explored themes of identity and new chances, relationships and escape, language and culture. I have no doubt that my ME experience informed what I was writing, but I never touched directly on what it was like to live with this condition. 

New book and change

That changed with my new book, which has just been published in e-book form, with the printed version to follow. It has been two years in the making and began with a quote from a linguistics book by Stephen Pinker that I was reading - 

"The verbs be, go, do and have are the most commonly used verbs in most languages - many language scientists believe that the meanings of these verbs - existence, possession, action, motion - are at the core of the meanings of all verbs."

Immediately, I saw the potential for stories. I started writing that very day, and things came together quickly. I wrote about a meditation group and three characters who were trying to live in the moment and just "be". 

I wrote about a travel writer who had itchy feet but had decided to try and settle down. That was the "go" section. 

Then there was the property tycoon who had come from a poor background and who had built up his wealth with some questionable practices. That, obviously, would work for a story connected to the verb "have". 

So a novel exploring these four central verbs; Be Do Go and Have, began to take shape. I had only one verb left though, one that I had been putting off till last - Do. 

The solution was obvious, though I resisted it for a while. Eventually, I began to write about a young woman in her twenties, Kay Noone, who is housebound with ME. In then end, that soon became the easiest section to write. It just came out, and I found that I could write from her perspective without even really trying. 

Kay describes her condition as a "doing allergy". As she says, looking back at her former life, "I did, and now I do not do". What I was exploring through Kay was one of the key frustrations in the life of a person with ME - everyone around you seems to be engaged in a non-stop flurry of action, while you are stalled, limited and generally unable to "do" much.  

The stories develop in a parallel fashion, with characters from one appearing in another, and themes repeated and explored across different narratives. Slowly, the stories draw together towards the end. 

The choice of a person with ME to represent the "do" section of the book soon began to seem natural, but I was only able to write this because I have made a kind of recovery, and am now living a close to normal life. I am not recovered completely, but I am busy and active and working full-time, and engaged in all of this action that I used to wish for and which Kay, in the book, is not able to do. 

I am still a little insecure about my recovery, but it is holding, for now. If I was still in the midst of the frustrating life of limits that I had for so long, I would not have been able to write the ME part of the book. 

ME Novel?

I am reluctant to market this as an ME novel, as this theme is only really one quarter of the whole book. Yet, Kay's story is a central part of the narrative, and I think a lot of people may identify with her experiences. 

That said, the ME community is diverse and not at all homogeneous, and there are people who suffer from ME who would read Kay's version and not identify at all. There may even be some people who are offended by my portrayal of an ME sufferer. I was aware of that as I was writing and was trying to be sensitive to it. However, you cannot represent everyone with a condition where people's experiences are so varied. Kay's story is one story, and is not intended to be the definition of an ME experience. 

I deliberately made the character a young woman, as it seems that about three-quarters of all sufferers are female. Kay's experiences are not really mine, though they are informed by what I went through. As much as my own experience, her characters is influenced by what other people I have read about and talked to have communicated; including Jennifer Brea and No Poster Girl. 

All told, I am pleased with and proud of the book. I am also happy with the Do section; the M.E. section of the book where Kay tells her story. I tried to get inside the mind of someone in that position, and believe that I have succeeded, at least partly. 

If anyone wanted to read a sample, part one of Kay's story is here (there are four parts). The book went up on the Amazon Kindle store this week, and will be available as a printed version in the next couple of weeks. More info on my website here, if you are interested. 

UNREST

There was a screening of Jennifer Brea’s harrowing film Unrest yesterday in a local hotel and, after twelve months or so of largely

staying away from thinking and talking about M.E., I decided to go along.

The film was organized by the Irish ME/CFS Association and introduced by a young woman who herself has M.E. and who, I later found out, had done interviews on local radio and newspapers. The radio interview is here; she is poised and impressive and an excellent spokesperson for M.E. sufferers. 

Jennifer Brea

People may not have heard of Jennifer Brea, but her story is a familiar one for anyone with CFS/ME; she was a healthy, active individual when she contracted a virus that left her quite ill. Essentially she never recovered after this virus; a story that many millions of people can identify with. She is married but quite badly disabled and, in frustration at the limits on her life and the inaction of the medical community, she decided to make a film about her experience.

That film is called Unrest. The most impactful element of this film is that Jennifer insisted on being filmed at her worst, when she was exhausted, unable to move, depressed, semi-suicidal, intolerant of light and noise, unreasonable and frantic. It is this human element that brings home the massive impact that the condition has on her life, and on all sufferers lives.

Marriage

Another key element in the movie is her relationship with her husband. At my worst, I was cared for by my parents and siblings, but luckily I was rarely bad enough that I couldn’t do the simple everyday things of preparing food, showering and dressing that are a struggle for so many.

Even still, I felt guilty about the impact that my illness was having on their lives, in terms of worry and also in the practical things that they had to do just to keep me going. That is also something that is obvious in Jennifer’s worldview; she feels like she is holding her husband, Omar, back in his life, unable to give him children, dragging him down with her. 

There is an affecting scene near the end of the film, where Jennifer expresses a lot of this to her husband. We have seen the effects that her illness has had on him, that he too is in stasis with his life on hold, acting as his wife’s carer and support system. He told her, apparently honestly – though I imagine he must have thought that it was all too much for him too at times – that it was still all worth it, just to have her in her life. Yet you could see the pain that this caused them both, the devastation ME/CFS has wreaked on their relationship and on their day to day lives.

Personal Impact

I called the film “harrowing” above because for me it was a little traumatic watching it. I have made quite a decent recovery in the last five years and in the last year my life has opened up in ways that I never thought possible; I am now working full-time, I exercise regularly, cycle in to work most days, have published a book and have recently begun a relationship for the first time in years.

I am coming close to the end of the academic year and, as of this date, I have not missed a day – or even a class – to illness since March 2017. This small fact I consider, in my limited, stumbling existence, as one of my greatest achievements of the last ten years, seeing as I have a history of missing weeks at a time due to illness.

I am happy, active, interested in the future. This does not mean that I am 100% “recovered”; stress still affects me in disproportionate ways, I take a long time to recover from illness of any kind and I have to carefully manage my energy levels and activity. I still have periods of exhaustion, headaches, some nausea, food intolerances, sluggishness, a huge dependence on good sleep. In truth though, a lot of this is true for many “healthy” people, especially those in their mid-forties.

So I have made progress that, in my worst days, I didn’t imagine was possible. Yet those years, decades of ill-health are still with me; they profoundly effect the way I live my life now and they have made it so that I am ten or fifteen years behind my contemporaries in terms of family, children, relationships, career. And they have left a psychological legacy that I am still coming to terms with.

Memories

Watching Unrest just brought back memories of my past struggles and difficulties; things that I have been trying to block out for the last busy year. This is the reason that I haven’t posted a blog post in almost a year; I have been busy trying to put a life together, trying to move forward, loath to go back to that time in my life when I saw myself as someone without possibilities, someone left behind, one of the forgotten.

It was a terrifying, lonely, desolate place – and I wasn’t even someone who was severely affected, like Jennifer Brea – and, like any traumatic experience, I have been pushing it back to the dark recesses of my memory, not wanting to go back there. Unrest brought up stuff I have been trying not to think about.

An Important Film

It is an important film; important, not just for ME sufferers, who will see a lot of familiar themes in the story of Jennifer Brea and of the other PWMEs that she interviews, but for those who, until they watched it, did not know anything about the devastation that M.E. can have on a person’s life.

It has also reminded me about how lucky I am, even more than twenty years in, to have a life back, and how such a precious thing should not be taken for granted.

NOW ONE OF THE TOP 50 CFS BLOGS

Delighted to say that my blog has been named among the Top 50 CFS blogs by feedspot.com.