One of the biggest things that I have done in my forty-five years is publish a novel. It is something I have been wanting to do for years – probably since I started reading – and I managed to do this in the last six months.
It was a big project; I talked about it a little in my last blog post. As I have self-published the book, I have had to do everything myself, especially in the area of launching and promotion, and this has been the hardest part of the whole enterprise. Still, I launched it here in Ireland in July, and then set about looking at launching it in Portugal – the novel is called A Year in Lisbon and is largely set in the Portuguese capital.
I went to Lisbon twice in August, and had set up a week of talks and readings for mid-September, mainly in bookshops in Lisbon. I came back to Ireland, booked flights and accommodation for thatweek, and began to promote the events. I emailed both Portuguese and English language newspapers, radio stations, journalists, libraries, language schools (the book is set in the world of English-language teaching), book bloggers and anyone I could think of, trying to stir up a bit of interest in the book and in the launches.
And then I began to feel bad. I am still not exactly sure what precipitated the whole episode, but there were doubtless a number of factors that contributed. I had been pushing things a little, doing a lot of travelling, a lot of walking around Lisbon in thirty degree heat. And I had become a little obsessed about promoting the book and the launches, and had entered a kind of dangerous head-space where rest and pacing wasn’t high on my agenda.
There were a couple of other things at the time that may have added to the whole mess. Whatever the ultimate cause was, I found myself semi-exhausted, a bit dizzy and also sleepless for a couple of weeks. It was a strange episode, one that I hadn’t exactly experienced before, and I wasn’t sure exactly how to get out of it.
Meanwhile I was still trying to prepare for my Lisbon launches, figuring that I would be over my little blip and recovered in time to go back to Portugal for the week of events I had planned. I had three weeks between starting to feel unwell and the day of my flight, and thought that that would be enough time.
The week before I was due to fly over, I tried to get back to doing some normal stuff, teaching a few classes, going for short walks. By the Thursday, three days before my flight, I knew that it wasn’t going to happen. There was no way I would have been able to catch an early-morning flight, make it over to Portugal, do some readings and survive for a week in Lisbon, before coming back and starting back into full-time work. I was too weak, shaky, breathless, dizzy. I cancelled everything.
Like anyone with ME/CFS, I have cancelled many, many things during the course of my illness. I have missed countless flights, parties, family events, funerals, classes, holidays, celebrations and reunions of all kinds. Cancelling things and missing things has been a way of life for me for as long as I can remember. But this was the biggest blow yet. Publishing this book is the single biggest thing I have done, and the week of launches there promised to be one of the most important of my life. To have to email all of those people to cancel the whole thing was a bitter pill.
For a few days I was devastated, and then the realities of my life here in Ireland kicked in, and I became more concerned with being able to just function here, never mind going back to Portugal. I had a busy term of teaching ahead, and somehow had to ensure I could actually get back to my normal life in Ireland. That became the priority. And the venues and bookshops that had planned my launches were understanding about the cancellation; it even turned out that a few people I was in contact with had friends or family members with ME/CFS, and so understood a little of my situation.
In fact, they all suggested that we rearrange things for another, future date. I realized that I could probably take a week off at the beginning of November; there is a Bank Holiday that week anyway so I would miss less work, and so that became the new plan. The flights and accommodation I had booked for September had been paid for and were non-refundable, but this was now something I was determined to do, and so I have booked another return flight for November 1st.
Slowly, in the last few weeks, I have come back to myself a little. I have gradually increased activity, have gone back to work, with difficulty, and am now close to where I was, pre-mini-relapse. My new flight is in just over three weeks’ time, and the events begin in three and a half weeks. I will have to start publicising everything again very soon, and then think about booking accommodation.
The truth is that I am naturally apprehensive. I am more or less ok at the moment, but one cold or flu or sore throat between now and November, and all my plans collapse again in a heap. I am reluctant to start publicising something that I have already cancelled once, and which there is a chance that I could have to cancel again, if anything small goes wrong. I have made progress in my health in the last few years, but I am still vulnerable, and any small issue that crops up could make it impossible for me to travel. Cancelling once was bad, having to cancel a second time would be devastating.
At the time of the first cancellation, I was upset, disappointed and saddened, but of course not really surprised. Cancelling things has become a way of life for me in the last two decades. Yet, once I had time to get used to the idea, it also felt kind of fitting: the story of the writing and publication of this novel is totally tied up in my history of ME/CFS.
I began writing precisely because it was the only useful thing that I could do for years – I could do it in short bursts, and when I felt up to it. And Lisbon was where this whole sorry saga began: I was living there in 1996 and 1997 when I began to get a lot of illnesses, constant infections and strange symptoms that eventually developed into post-viral fatigue, and from there to ME/CFS. I wrote a lot in the following years, and set a lot of stories back in Portugal – I had been forced to leave Lisbon because of illness, and it felt like my story there was unfinished. I think that writing about the place was a way of visiting there when I couldn’t physically do it, a way of conjuring up a location that had been important to me for a short period.
So to write a book set in Lisbon, and to publish it and plan to launch it there – and then to have all of those plans destroyed by a period of ill-health; well, I kind of appreciated the irony. It was almost fitting, in a horrible kind of way. If figured. My hubris was punished. I had begun to act like ME/CFS was no longer an issue for me – publishing a book, travelling and working close to full time – so it was almost logical that it would intrude again, to fuck up my Lisbon plans. My condition stopped me from returning to Lisbon nineteen years ago (eventually leading to me writing a book about the place), and it came back to prevent me from launching that very book, in that very same city.
Still, I am lucky enough that my relapse was temporary, and that I am well enough now to consider rearranging everything, and to give it a second go. 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. Fingers crossed.