I have had M.E. for twenty one years. So it is perhaps particularly appropriate for me to write something to mark M.E./CFS International Awareness Day. You could say that we have now come of age, M.E. and I together. I do not feel like celebrating. But still, it is something perhaps worth honouring – the fact that I and so many others like me carry on and live our lives, that we are, in spite of everything that the illness brings with it, alive. What does this mean to be alive when so much of life has been compromised or brought to a standstill? I am, it should be said, one of the lucky ones. I can walk a bit, write and read a bit, travel a bit and am not wholly confined to bed or wheelchair. I would like on this day to honour those, especially any who might be reading this now, for whom life has become a very small space in which to live and have one’s being.
Recently we have read or heard on the news the terrible things that happened to a woman living in Austria, locked up in a cellar by her father for many years, forced to bear his children, some of whom never saw daylight. We heard last year of the imprisonment of Natascha Kampusch, now free after ten years confined to a small space. I am not intending to compare my situation with theirs. The reason I mention them in this context is that I am always freshly astonished at the capacity that people have to survive, not just in body but in soul – particularly that. When one interviewer suggested to Ms Kampusch that she couldn’t have had any life at all, she had to explain to him that she did of course, but not in the way that others did. Where we have many rooms, she divided her small space up into areas and created for herself an environment, waiting for the time she would be free.
I do not think it likely that I will be free of M.E. I spent years, money, strength, looking for a cure, thinking that one day I would have my life back, hearing about people with Post Viral Fatigue Syndrome who recovered. In early days I did not distinguish between that and M.E. I was unable to read the signs of an increasingly malfunctioning immune system, didn’t know that recovery, as I pictured it, would be unlikely. Perhaps that was just as well because I don’t know how I would have stood it. I have a memory of cycling along a country road in Germany with my baby daughter in a basket at the front, she holding her hand out to feel the wind rush past; another of us in the sea in Hove, me with my small son in my arms, waist-deep, jumping the waves. I already had M.E. at that point but was able on occasions to override it, something which would (I learned over and again) lead to worsening symptoms. Neither children will remember those occasions because they were too young, but those moments are written into me – precious because they were the last moments of their kind. I had to move, as it were, to another country, the land of a particular kind of chronic illness – to learn its ways and find my way around.
There is the temptation to be glib about a life as constrained as ours must be. As everyone (who knows anything at all about M.E.) is aware, one of the strategies we are advised to employ is that of “pacing” ourselves. Perhaps what is imagined is a well-ordered day where life is punctuated by well-timed rests in between bouts of productive activity. The problem is that for many the illness is characterised by lack of rhythm and unpredictability. Even for those who have had M.E. a long time, it is easy to look at others who have it and imagine that they a) somehow manage things much better or b) they don’t have the illness as badly, if at all. It is easily, especially in the blogging world, to misinterpret. To complicate matters, there is wide misunderstanding about what M.E. actually is. People who are going through a temporary bout of post-viral fatigue, or those who are tired and debilitated, announce that they have it and probably actually believe that they do. Then, when they get better, we hear about so-and-so who recovered after a year and there is the implied suggestion that we could too if only we did the right thing or changed our attitude. But the truth that isn’t easily spoken is that M.E., unlike some other fatigue-related illnesses, is not likely to go away. And though there may be improvement, it remains unpredictable and volatile and the falling back after a period of relative wellness is terrible.
And yet the impulse to seize the day is – can be – quite overpowering. For me, at any rate it is so. A day when I am suddenly, inexplicably, without symptoms is as terrifying as it is ecstatic, for I am caught up in a euphoria that won’t be resisted, as though all the life that has been waiting to be lived rushes in to that day, that moment, and clamours for release. No matter that I know how terrible is the comedown one or (at most) two days later, I fall for it. This is the time when one is most likely to do things that bring on bad relapse and commit to impossible projects. This is the time when people look at you and think: surely she can’t really be ill. But I am, and have been, and probably will be.
In this acceptance lies my strength. In this small space I must create a way of living that keeps soul alive and thriving, and I do and will, because life is precious, no less because I am disabled, not on the main road or the fast lane. We all learn this, I think. You could say that it’s a path of initiation. We didn’t choose it but since we are obliged to walk it we learn how to.
Coming of age now, having had this for twenty-one years, I know that there are still no answers. We are moving slowly towards a better understanding; it is possible, or I like to imagine, that by listening to what gives us strength we learn more about what is essential for everyone: that we require food with the life force still in it, that spending long hours under strip lighting or around formaldehyde-treated furnishings makes us ill; that music, art, poetry, kindness, laughter (you can add to this list) are not optional extras but essential; that the heart is not just an organ for pumping blood around our bodies; that even in dark places there is a light in everyone that won’t be extinguished; that this may be something we can believe in.