Małgorzata Baranowska’s book is not a self-help manual. It is an extraordinary testament, a personal narrative bordering on an essay about something extremely private and painful; after all, it is impossible to share illness, just as it is impossible to share pain. But although the experience of suffering cannot be transmitted – in any case, as Baranowska says, each person experiences illness in a way that is determined by his or her own nature – it is possible to share information about what it is like to live with suffering, and this sort of information can be helpful to others. In her professional life Baranowska is a superb poet and essayist. Here she presents her most private point of view and does it in a fascinating way, though in this instance the word fascinating seems inappropriate, if not indecent, considering the fact that she is writing about years and years of battling with lupus, an illness which attacks in a complex way, gradually destroying the organism, causing chest pain every time you take a deeper breath, ulceration of the mucous membrane in the nose and mouth, hypersensitivity to sunlight, anaemia, hair loss, muscle pain, arthritis, swelling of the lymph nodes, kidney damage, headaches, chronic fever and constant fatigue. And yet it is hard to put this book down, probably because it is not in fact a chronicle of suffering. Baranowska regards her life – and her illness – as an adventure.
“Maybe there is no point asking why I am ill. Maybe the real question is why should I be healthy? After all, it’s a miracle that some people are actually healthy. When I was struck down by illness, I realised I had to fight it, and that nothing in my previous experience was of any use to me at all. Lupus attacks a person’s mental state as well. We sick people are entirely on our own, we are naked, body and soul. The threat does not come from the outside. It is something that is inside us and that attacks us from within. To fight this illness, you have to put up a defence against yourself.” Baranowska tells the story of her battle with illness as the tale of how she structured her own life to allow her to live as fully as possible, without giving up the things that matter to everyone: close relationships with people, being in contact with art and with your own creativity – in order to remain yourself and, even when chained to a hospital bed, still be in control of an infinite expanse, as one of Baranowska’s friends puts it.
- Marek Zaleski
Małgorzata Baranowska (1945-2012), a poet and essayist. As a historian of literature her topics included surrealist poetry and the work of Wisława Szymborska. She wrote more than a dozen books. She died on 22nd of January, 2012.
In fact, however, people do not live mechanically and mathematically, only, how should we put it? Let us say, people live approximately. They advance to some extent by feeling their way. As they do not know their fate in advance, they set themselves one goal after another, and do their best to maintain as good a position as they can with regard to life. They usually only do things like indulging in something on a daily basis when extreme circumstances force them to. People may be predictable in body and soul, but only in the broadest terms. In fact they are incalculable and unique. That really is beautiful. They do not let themselves be interpreted purely by numbers. ...
Man’s unique nature, including his physical uniqueness, is a feature that is wonderful, and also rather dangerous, which becomes evident with an illness such as LED (short for lupus erythematosus disseminatus). That is to say, with lupus the organism behaves in a highly individual manner, making it difficult to treat. In turn, the body’s reaction to hormonal treatment also comes out differently in each person. Both doctor and patient have to demonstrate extremely advanced flexibility in how they think about this illness, and in how they react to it. This does not mean no formulae have been developed for treating it. There are some, and they work, but they require a degree of imagination in the way they are used.
Imagination is an essential factor for the doctor’s interpretation, as well as for yours or mine. We all use our imagination to enrich our previous experience, by evaluating the situation and anticipating the effects of our actions. But the imagination can also play nasty tricks on us, by suggesting images of probable misfortunes and filling us with fear. It attaches ominous meanings to names that are familiar to us, as well as ones we are hearing for the very first time.
You all know very well that from the first moment when the doctor discovered “everything” about your condition, almost all of you knew it too, sometimes without a clue how, because he certainly didn’t tell it to you straight; sometimes you understood all too well what he said, even though he thought he hadn’t explained it fully, and sometimes you guessed from some of the family’s gestures or whispers. Often you were only given a diagnosis in Latin that didn’t seem to tell you anything, and sometimes it was explained precisely.
On the basis of my own non-expert observations over many years, it looks as if only patients with some sort of severe personality disorder could truly fail to know what was happening to them. Everyone else works it out perfectly, regardless of education or attitude to medicine. But usually after the first encounter with the magic of numbers (meaning the various tests), they often get caught in the magic circle of names, in the labyrinths of taboo. They play a game of appearances with the doctors, who tend to do the same thing, with their families, who are also prone to playing this game, and with Fate (at least Fate keeps quiet).
Why does this happen? This is a matter of imagination too. The patients are perfectly good at imagining a threat. They are familiar with the surprises Fate can spring on them. And yet, for example, they instinctively believe that anything which hasn’t been named does not exist. Since taboos probably showed up at the same time as man appeared on earth, and still exist to this day, perhaps they simply have to be recognised as an inevitable part of human life. Taboos are as much part of fear and ignorance as of defence, and also of knowledge which the person who knows is hiding from himself.
Many of you may have met someone suffering from cancer who never uses the word “cancer” and will never provide a precise diagnosis, which in any case might not entirely prevent him from carefully carrying out the doctor’s orders. Sick people refer to their illness as “this horrid thing”, “it”, or “my friend for life” (as a result of the doctor’s encouragement to “love your chronic illness”) – they use various terms. I once heard someone call cancer “the little red fish that walks backwards”. This definition apparently comes from a debate with the author of an eighteenth-century classification of the natural world. That was the definition the author had given to an innocent crayfish – which in Polish, is literally called a “river crab”; Polish also happens to use the same word for “cancer” and “crab”. An adversary had pointed out that the definition seemed apt, apart from the fact that a crayfish (a “river crab/cancer”) is not a small fish, nor is it red, and nor does it walk backwards.
Of course, the encyclopaedist did not mean to hide anything behind his definition of the river creature – quite the opposite of the sick person, or allegedly sick person (because he used this phrase before being diagnosed), who was clearly trying to find a way to domesticate the dangerous potential of the diagnosis. Maybe he wanted to deny it all, because he knew the whole story, including the debate invalidating the definition of a crayfish (or “river crab”) as a small, red fish that walks backwards. I know he was familiar with the entire anecdote because he quoted it to me himself.
As for me, only nowadays am I capable of admitting it, though I knew what was going on from the very start. Indeed, I think it was early February 1980 when I was given a referral to the hospital, written out by a clearly horrified specialist in internal diseases who, as he didn’t know what was going on, wrote just in case that he suspected multiple sclerosis and myasthenia all at once. It was polyneuropathy in the course of lupus, but no one thought of lupus until a couple of months later.
With this referral, combined with a very limited capacity to move my arms and legs (fortunately the attack had abated a little on its own), how could I not know I had paresis? I couldn’t fail to know. I knew all too well. My father had been partially paralysed for a long time (thanks to two haemorrhages or embolisms, I don’t remember which). He went about, or rather was pushed by Mum, in a wheelchair, and had suffered various kinds of aphasia which had not entirely gone away. So here I was, not able to move much, and with severe sensory malfunction (not to mention pain). Not bad, I thought to myself. Bloody hell, has it happened to me too? Maybe I’m dreaming?
And do you know what happened? I did everything I possibly could to get cured. I was always a disciplined patient, except that I never used a certain name. After the first attack of polyneuropathy (polyneuritis), combined of course with lots of other inflammations, my illness was more to do with lupus of the joints, kidneys, and I forget what else. But from some point in 1982 I have had recurring attacks of paresis of very varied strength, first more rarely, then more often. They do recede, but every time they leave something behind, if only a very small trace of damage. It is amazing that a human being has the capacity for so many adventures.
Translated by Antonia Lloyd-Jones