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 that
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.
