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. 

TWENTY YEARS

I usually put the anniversary of the beginning of my experience with ME/CFS at the beginning of December. I got a cold in late November, 1997, and that was the last time that I was fully healthy.

Yet all during that year, 1997, I was ill. I had constant sore throats, chest infections, colds, flus. I would finally get over one illness and two weeks later I would be sick again. I was missing a lot of work, and even when I managed to get in to work I would be struggling through the day, just about managing. The illnesses were not very serious in themselves, but they tended to last a long time and cause me profound exhaustion and post-viral fatigue. I was being dragged down and down and down, my immune system was not working successfully, and I was depressed and under a lot of stress.

It is obvious now that that was all laying the groundwork for the real collapse that came later. So it is now twenty years ago, and more, that that all happened. I look back on the person in his mid-twenties that I was then, and feel sorry for him; he was so clueless, so ignorant of how to deal with this slow destruction of his health, so lost. I never really had a chance.

I can now see that part of the problem was that I needed time to get over the various infections that I caught, and I didn’t always give that time to myself. I didn’t always take the time I needed to recover, and was too hard on myself; I have to get back to work, I thought, they are going to fire me if I miss more time, what are my students going to do without me? The truth was, by forcing myself to work when I was sick, I made everything worse and so missed more time. My students would have been fine with a sub for a few more days. The world did not need me to be superhuman and invulnerable.

My mind goes back twenty years because what happened then is still happening. Whatever flaw or weakness in my immune system or central nervous system that exists, it is a fact that I need a lot of rest and a good length of time to get over something simple like a sore throat. I have made a lot of progress since my worst days – and in general I am probably in better shape now than back in 1997, before the official beginning of ME/CFS for me – but a minor infection like a cold or stomach bug still floors me, just as it did then. Nothing else has such a profound effect on my whole being, nothing else leaves me so utterly incapable of functioning.

And I am still making the same mistakes. Ten days ago I got a sore throat – annoyingly during the spate of hot weather that we had – and now I am hardly any better, and in fact it has moved to my chest now and it is difficult to breathe. I had organized a launch in Dublin for a book that I published last year, and so had to travel down on the train last week – two days into my illness – and speak for two hours in front of a crowd. This was stressful and tiring and so obviously I paid for this, and just got more ill.

I tried to keep going a little when I came home, doing a little shopping, visiting people, short walks, but of course by this morning I realized that I felt like shit and was probably even worse than before. I was reminded of the fact that I all too easily forget; to get over any kind of infection, I have to stop everything. Everything has to be shut down. I stay in, eat, sleep, maybe shower (though not always) and do almost nothing else. This is my only way to recover: intense, deep rest. Just as it was twenty years ago.

Every time I get sick, my mind goes back to all of those other episodes of illness that I have experienced in the past. It is traumatic for me, I think, because I am not good with inactivity, I don’t like just sitting still and I always thing that I am missing something. And by now, I have lost so much time over the length of my illness, that having to take even more time out to get over a cold seems like such a waste.

I don’t look back very often, and don’t tend to have a very good memory for events in the past, but there is one two-week period from March 1997 that I cannot forget, much as I would like to.

I was teaching English in Lisbon, Portugal. I got sick on the Monday (it nearly always happened on Mondays and Tuesdays, after a late night out on Saturday), and it soon developed into a chest infection. I took a couple of days off, but by Friday I reckoned that I really should be better, (I wasn’t) and needed to go back.

At that time I had Saturday morning classes, so for some reason I rang the school on Friday and told them that I would be in. I still felt like shit though, and that night I didn’t sleep, realizing that I had made a mistake. I went in on Saturday anyway, crawled through my classes and came home and crashed.

I had arranged to go to a Portuguese friend’s house in the country that weekend and so, even though I was in no fit state to go on a weekend away, I left on the Sunday morning with two of my friends (it was a long weekend; we all had three days off the following week). I had been looking forward to going away and so, rather than miss out, I said I was recovered and headed off. I remember thinking that I desperately did not want to be on my own that long weekend.

That night, in the house in the country, again I didn’t sleep; I had difficulty breathing and was anxious. When my friends went out to the local shop, I walked to the nearest village and took a bus back to Lisbon. I had now really lost the plot. I was stressed, ill and didn’t know what I was doing. I clearly remember that journey on the rickety bus back to the city, constantly using my Ventolin inhaler and still having difficulty breathing.

I made it back to my empty flat. Instead of resting, as I knew I should do, I went out into the city, did some walking and shopping. I still don’t really know why. By the time Wednesday came around again and I had to go back to work, I was still ill. I went back anyway, and had to take another week off (just after a five day weekend) to finally clear my chest infection.

I drove myself into the ground with my restlessness, my inability to just take the time I needed, my refusal to listen to my body. That two-week spell is crystal clear in my mind, like very few other times are, because of the level of frustration, anxiety and illness I went through. And I have never really adapted to this frustration with my sluggish immune system: it makes me so annoyed to have to undergo this trauma of weeks and weeks of being affected if I get so much as a sore throat. It is exhausting, and has shaped my life profoundly in the last twenty years.

In twenty years time, I will be near retirement age: a thought that is more terrifying than anything else in my life. But twenty years ago was when it all started. 

SNAKES AND LADDERS

I roll the dice

And move like

An arthritic old man

Space by tortuous space.                                         

I roll one

And then one

And then one.

There are no other numbers.

With time,

I make progress.

But then, there is the serpent,

His tongue out,

Lascivious and filled with venom.

He wants to make top, bottom,

Up, down,

High, low.

He is a machine for defeat.

Inevitably

I step on his head

And down I go.

And so, I roll the dice,

And move like an arthritic old man,

Space by tortuous space.

In this game

There are snakes,

There are no ladders.

IT HASN'T GONE AWAY, YOU KNOW

Between the 1970s and the 1990s there was a campaign of violence and conflict in Northern Ireland, begun by the IRA and carried on by Loyalist paramilitaries. It was called The Troubles. Thousands of people were killed and many more were injured and maimed in a low-level war fueled by historical divisions and hatred. By 1994 everyone, including the combatants, was exhausted, and the IRA declared a ceasefire.

Then the negotiations began to attempt to reach a political settlement for Northern Ireland. The negotiations were long and fractious and protracted, and on many occasions people lost their temper and their patience. One of the main players in these negotiations was Gerry Adams, leader of Sinn Féin, the political wing of the Irish Republican movement that included the IRA.

In 1995 Adams was speaking at a rally in Belfast. Someone – one of his supporters in the crowd – shouted out a question about the IRA. He kind of smiled, looked out at the crowd and said, in his broad Beyl-fahst accent, “They haven’t gone away, you know”.

https://www.youtube.com/watch?v=AY3ddrc6WjE

These six words became famous, at least in Ireland. They have been used since then to talk about anything and everything that people thought had disappeared (“Recruitment firms: they haven’t gone away, you know”, from a headline in a newspaper in 2015).

Yet Adams’s original words had a deeper meaning. There was an obvious threat behind them, and an implication that, although the IRA were on ceasefire, and were not killing people at that very moment in 1995, it would take almost nothing for them to return to war. They were still there, still a threat, and although they had gone temporarily quiet, they could begin causing chaos again in no time.

I thought of these words – “they haven’t gone away, you know,” – recently. They seemed apt for my own current situation. I wrote recently about having published a novel, and about how proud and excited I was by this. I had done a lot of work to promote it, and had planned to launch the novel in Lisbon, where the book is set.

In my last blog post I wrote about how I had had to cancel a series of launches that I had planned in Portugal, as I had had been ill and exhausted with ME/CFS. I had organized and promoted three separate events in the space of a week, and had to cancel them all. It was tough to take, but the truth was that there was no way that I could have gone; I was just too drained and shaky.

I slowly recovered from the difficult period and rearranged some of the events for this week, as it is a mid-term break for me in work. I was due to fly over to Portugal on the Tuesday of this week.  I wrote in my last blog post, three weeks ago –

“It is going to be a scary three weeks until my flight; three weeks of avoiding anyone who is sniffling or coughing, three weeks of looking after myself, and trying not to overdo things, and to avoid getting sick. My job is to stay on the tightrope for just a little while longer, to stay well and finally make it over to Portugal, at the second time of asking.”

Of course, I didn’t manage it. I had a busy week, a few weeks ago, with work and other things, and by the time Friday came I realized that I was wrecked again, and that I had overdone it. This has happened before; if I don’t fully recover from a relapse and try to get back to normal activity too quickly, I can be back at work, even for a few weeks, and then crash again when I just push things a little too far. If there is any little bit of vulnerability left, unless I am careful, everything can fall apart very easily and I am back to square one.

So I was off work for a week, and then last week I went back on a limited basis. But my flight was on October 31st and again, there was no way I was recovered enough to be able to fly to Portugal and run a couple of book launches. For the second time in six weeks, I had left an empty seat on a Ryanair flight to Lisbon.

At least this time I didn’t have to cancel as many events, or with as many people. I hadn’t really started to promote the new dates yet – maybe I had sensed that something like this was going to happen – and so I only really had to contact the bookshops and the university where I had organized talks. It was almost three weeks in advance, so I wasn’t letting anyone down. Still, it was hard to take, especially a second time. And more so seeing as I can’t really see a time in the near future, even if I get back to normal, when I am going to have time off to go and launch this book.

It was something I desperately wanted to do, and – surprise, surprise – ME/CFS made it impossible. This is obviously not the first time that I have missed something important because of illness, but two in a row was hard to take. I may be used to it, but it doesn’t get any easier.

I had been acting for a while there as if my condition was not really an issue anymore for me. I have been working a lot, travelling, doing as much as I can to fill up my life, after having such an empty one for so many years. I have either forgotten, or chosen to ignore, the fact that I still have ME/CFS, that it is still an issue, that I am not a “healthy”, though I act as if I am. To paraphrase Gerry Adams, “it hasn’t gone away, you know.”

Far from it. It still dictates how I live my life, despite my increased activity levels. It means that I have organized my whole existence to allow me to live as fully as I can, without being overburdened with extra stress. I don’t have a relationship, and haven’t really tried to begin one, as I really don’t know how I would be able to fit one in, without having to work less or change my life around completely. ME/CFS means that I live in a cheap (though adequate) shared house rather than a place of my own, so my rent is affordable and I am not forced to try and work even more to pay for it. I live a necessarily limited life, within strict boundaries, just so I can have a little normality in other areas, like work, travel and social life. I have had to make choices; eliminate some things I may want so I can have other things.

The thing is, part of what I do when I am out in the healthy world, interacting with people who don’t have to carefully manage their limited energy levels, is pretend that I am like them. I will talk about the condition if someone asks, but it rarely comes up, and most people I know don’t really know about the struggles I go through daily. They just see the professional me, or the me who shops, or the one who turns up to social occasions. And I don’t advertise the huge effort all of this takes to appear normal. In fact, I just want to blend in. And so I spend so long pretending, or at least so long trying to be just another unremarkable person living in a small city in the west of Ireland, that I almost convince myself that that is just what I am.

But, it hasn’t gone away, you know. And it will never go away, I can see that. I have probably always known that, no matter how much I forget about it, or how much I can do, or how full my life is. It is always there, like the IRA in 1995, ready to cause chaos and mayhem and destruction, if anything goes wrong. 

Inevitably, the IRA did go back to violence in 1996. They finally announced a permanent ceasefire a few years later, but the divisions and suspicion still exists in Northern Ireland, and that hasn't gone away, though most of the violence has. 

I get my own ceasefires; periods of relative normality where I can operate as if I were healthy. But this condition is like a terrorist organization, one that goes dormant for a time, one that can appear like it is gone, but which is always still there, living in the cracks and weaknesses of the system. Ready to strike. Finding a way to live with this knowledge – and to achieve that massively difficult balance – is the hard thing. I don’t know if I am any closer to working out how to do it.