10.2357/ REAL-2021-0018 h eta p yrhöNeN Literature as a Lifeline The Value of Literature for a Cognitively Non-Typical Reader In the latter half of the 2010s the Finnish Government cut university funding My colleague retired and his professorship was not filled. For a good while, I managed the workload of two professors Eventually this situation took its toll, and I had a pacemaker implemented Alas, that routine operation failed, leading to what is called pericardium effusion, that is, my heart pouch filled with blood the removal of which necessitated an emergency operation This procedure, in turn, led to a new complication One morning in early July 2017 my head ached terribly, and my vision was blurred by what looked like dancing Northern lights By chance, the previous day I had written a neurologist friend of mine who worked in the hospital, and that morning he came to visit me We chatted for a while The next thing I remember is that these lines from John Donne’s poem started persistently echoing in my head: “send not to know/ For whom the bell tolls/ it tolls for thee ” These lines were coupled with the sensation of a cold wave starting from my neck and working its way up from the back of my head to the crown and forehead “I am dying now” is the last thought I recall having before I sank into total, immovable darkness This wave-like sensation is my memory of suffering a stroke that leads to various degrees of brain injury, resulting in different degrees of cognitive difficulty and hemiparesis. My friend’s visit saved my life, for he recognised what was happening and arranged for help In this chapter, I write about the role literature played in my fight to recuperate from brain injury My account is purely practical, not medical, cognitive, or neurological, because recovery requires a practical approach This essay conveys a survivor’s experience Each is a piece of the continent, a part of the main In my case, the stroke lead to what is called left-neglect Left-neglect is an attention deficit, a condition in which it is difficult to see, observe, and feel the 362 h eta p yrhöNeN 10.2357/ REAL-2021-0018 left-side of one’s body, field of vision, and surroundings. For example, when asked to follow with my gaze a doctor’s hand, moving from the right to the left, my eyes stopped in the middle As I did not see beyond the middle point, I could not even cheat by moving my head to the left I was alive, yet everything had changed When previously I had been similar to Donne’s everyman who is “a part of the main,” a “piece of the continent,” I had lost the sense of being an integral part of any world In my previous cognitive state, I had inserted myself into the space and place wherever I happened to be I would not say that I owned these spaces, but at least I had the sense of occupying them, of being securely in them Now I no longer had the feeling that I was an independently acting agent of what I could observe as a whole, manageable world Missing as it were a side of the world resulted in highly uncomfortable experiences of utter disorientation, displacement, and bewilderment Even today, it still can occur that I am somewhere in Helsinki, my birth city I know intimately, and if I cut a corner in an unfamiliar way, suddenly even familiar places may appear unfamiliar In such situations it takes some stretches of time before I can say where I am and how to locate myself in space and how to navigate in it It is helpful to illustrate left neglect with a few pictures drawn by stroke survivors These are not drawn by me, but mine were similar to them Fig 1: Image drawn by stroke patient, reprinted with kind permission by Prof Dr Olaf Blanke and Dr Isabella Pasqualini As the drawing on the right side illustrates, the patient clearly knows she is drawing a house. The result, however, is lopsided, thanks to difficulties of perception A similar exercise deals with drawing points of time on a clock face: Literature as a Lifeline 363 10.2357/ REAL-2021-0018 Fig 2: Image drawn by stroke patient, reprinted with kind permission by Prof Dr Olaf Blanke and Dr Isabella Pasqualini I found these clock exercises exceedingly vexing, as it was difficult to mark the left side I tried smoothing the left side although the paper was perfectly even Moreover, once permitted to go outside, left neglect led to dangerous situations, for noticing cars coming from the left requires even today concentrated and conscious effort I am involved in mankind The obvious and immediate conclusion resulting from left neglect is that one has to think of ways to start rebuilding the left side to one’s world experience As Donne puts it, “I am involved in mankind”; “mankind” typically shares a sense of a life world that has a rounded wholeness People usually experience themselves as agents capable of acting in a manageable environment Another pressing task addresses the shattering of the illusion of invulnerability that is necessary to our sense of being alive This illusion ensures us that we can trustingly rely on our personal continuity Once this illusion shatters, it means that one lives under the consciousness and fear of death It takes a lot of mental and psychic work to build this illusion again After the immediate danger was over, I was transferred to another hospital with a rehabilitation center The assessment of damages begins soon after a stroke This evaluation includes drawing tasks, basic calculation problems, memory exercises as well as physical tests and various practical tasks Rehabilitation involved meetings with neuropsychologists I met with two neuropsychologists whom I uncharitably - but only in my mind - called the 364 h eta p yrhöNeN 10.2357/ REAL-2021-0018 Squirrel and Miss Piggy These meetings largely consisted of exercises, involving memory tasks, usually retelling either a short narrative or trying to remember a longish list of words randomly strung together Interestingly, rehabilitation never involved any talk about strategies of memorisation, so I devised my own Memorising random words is much harder than impressing short narratives on one’s mind I fared well with both tasks With lists, I found it helpful to treat them as poems I remembered Marie-Laure Ryan’s claim that “poetry is essentially metaphorical…figural language does not display a foreign world for its own sake ” 1 I found, however, that projecting a world where I could, as it were, hang up the words helped a great deal I imagined a “hazy” and empty world and then pictured each word, sometimes adding something to them, for example, to the word “wind” I added a sweeping motion. If I deemed a word difficult in some way, I tried attaching some emotion to it Sometimes I coupled words, for example, with the string “chair,” “umbrella,” and “ball,” I set the chair upright, placed the umbrella on it, while putting the ball underneath Imaging a world, treating words as parts of a strange piece of poetry helped me to concentrate on what is rather a dull task I think that this strategy worked well because it involves a modicum of aesthetic and creative pleasure Short narratives are much easier to remember than word lists and, in order to provide a few examples, I recount three stories They illustrate the types of narrative neuropsychologists have chosen for patients to work with 1st It is a lovely summer day and a young boy and his dog go fishing. They go up onto a high rock It is very windy, and suddenly, a gust of wind tussles the boy into the lake The dog jumps after the boy and grabbing him with his teeth by the collar is able to save him 2nd A woman works in a school cafeteria It is payday and she has her salary in her handbag There are bills to pay, electricity and such She is the single mother of two children 250 meters to her home door, a man attacks her, stealing her handbag The anguished woman reports the robbery to the police The police direct her to social welfare services with whose help she manages the distressing situation 3rd A farmer has a barn It is midsummer After going to bed, he wakes up, smelling smoke Looking out the window, he sees the barn burning There is a valuable tractor in there that he is able to save Even though the fire brigade arrives quickly, the barn burns to the ground. Luckily, the insurance company compensates the damages to the full 1 Marie-Laure Ryan, Possible Worlds, Artificial Intelligence, and Narrative Theory (Bloomington, IN: Indiana UP, 1991), 86-87 Literature as a Lifeline 365 10.2357/ REAL-2021-0018 I first identified the problem or conflict the story dealt with, keeping in mind the notion that the end may frequently be thought of as a transformation of the beginning All narratives adhered to these principles Also, I determined whether the stories consisted of happenings or events Most stories built on happenings caused by unpredictable natural forces Only the story about the robbery had a character whose criminal act involved some premeditation and planning Unexpectedly, the rehabilitation exercises became a cause of contention During one session I remarked to the Squirrel that I thought the stories mocked us patients, because they present difficult situations as primarily addressing financial issues. Most stroke survivors had suffered various damages that no money could fix. The Squirrel took offence and told me I was overly critical. I was surprised to find out that it was undesirable for patients to discuss the nature of the exercises Consequently, the relationship to the neuropsychologists became uncomfortable Therefore, I had to think of ways of getting the rehabilitation I needed Enter Kim Philby Luckily, I remembered reading about Kim Philby, the famous British double spy, who worked both for Great Britain and the Soviet Union In my mind, I adopted the role of Kim Philby I started writing messages to my doctor friend with the title “Kim Philby reports ” In these messages I recorded uncensored accounts of my experiences as a patient Being a stroke survivor is a terrible ordeal: One is constantly aware of one’s former and current self The former self is the familiar and dear one The current self is largely a mystery, and one gets to know her through trepidation: what skills and abilities has this current self-retained—or has she altogether new traits? A stroke, after all, can cause, for example, personality changes such as becoming ill-tempered and belligerent Being Kim Philby provided a temporary vantage point outside this anxiety-filled dynamic. I think of Kim Philby as a transitional self, a role with whose help I could endure the slow process of getting to know who I had become and what I had lost Adopting the role of Kim Philby helped me find viable working strategies with the neuropsychologists One exercise had me write a story, underlining at least ten words in it that I had to remember in retelling the story during a session In a book of mine, Bluebeard Gothic, I had analysed Angela Carter’s Bluebeard stories I chose “The Fall-River Axe Murders,” for loose adaptation, and very subtly gave the victim of my story the Squirrel’s features Thanks to 366 h eta p yrhöNeN 10.2357/ REAL-2021-0018 the fact that the story and the underlined words were coupled with emotions, remembering was much easier I had a skirmish with Miss Piggy She showed me pictures and I had to identify what was missing from them We looked at a picture of a hand with a bunch of roses I told her that what was missing was the recipient of the bunch My answer was wrong, but I remarked that the concept of a gift includes three things, a giver, a gift, and the recipient I turned the pages, analysing all pictures conceptually I remarked to Miss Piggy that she should give me some credit for showing a side of the exercise that she had not previously thought of “But your brain is so damaged,” she retorted (What was missing was a glove, because the rose stems had thorns) From then on, I was in the role of Kim Philby during sessions with Miss Piggy whom I mostly met We did various exercises on the computer during our meetings Kim Philby always laughed about her mistakes, proceeding then to dissect them Miss Piggy never gave Philby any credit for rising to a meta-level in doing these exercises My earlier reading provided me with a working strategy to deal with distressing situations Looking back, although I have devoured crime and spy stories in abundance, this strategy, did not have to do with these genres The idea of Philby sprang from the pages of children’s and girl’s books I had read in my childhood and adolescence So many of these books have a heroine who lands in difficult and distressing situations and is not met with understanding and encouragement. She has to find ways of managing; she treats this challenge as one of creativity For these heroines, retaining dignity and remaining courteous in the face of hardship are of key importance Kim Philby helped me deal with anger and disappointment in not being treated in a professional manner Moreover, having a secret double life in a hospital has a humorous and entertaining side Enjoying Literature Experiencing space in the hospital is modified by the fact that the only space a patient can call her own is the bed that is assigned to her Here is a picture of my personal space for the 120 days I spent in the hospital Literature as a Lifeline 367 10.2357/ REAL-2021-0018 Fig 3: Personal photograph of hospital bed Thinking positively, the constricted size of the hospital bed provides the experience of mastering the space one is given I had my iPad with a Kindle in the hospital Soon after the stroke, I began reading for hours a day Luckily, in the West, we read from left to right Sometimes I just stared at the page, at the letters lined up on the left, thinking of them as toy soldiers ready to march onward I was really fortunate in that I was able to see the whole left side of the page, and I cannot but think that the movement from left to right in reading is so deeply ingrained in the brain that this habit was there all along to enable reading whole lines Kindle allows for a seamless transition from one book to the next In choosing reading matter, I consulted various compiled lists of reading recommen- 368 h eta p yrhöNeN 10.2357/ REAL-2021-0018 dations I only read in English, because I wanted eventually to return to work Here is a list of the books I read: - Barba, Andrés Such Small Hands - Babbit, Natalie Tuck Everlasting - Beckett, Samuel: Waiting for Godot - Burnett, Frances A Little Princess - Fowler, Karen Joy We Are all Completely Beside Ourselves - Gappah, Bettina Rotten Row - Honeyman, Gail Eleanor Oliphant is Completely Fine - Kalanithi, Paul When Breath Becomes Air - Lacey, Catherine Certain American States: Stories - Lee, Min Jin Free Food for Millionaires - Mendelsohn, Daniel An Odyssey: A Father, A Son, and an Epic - Ng, Celeste: Everything I Never Told You - Penny, Louise The Chief Inspector Gamache Series: Books 1-3 Still Life; Fatal Grace; The Cruelest Month - Pym, Barbara Some Tame Gazelle - --- Jane and Prudence - Robinson, Joan When Marnie Was There - Saunders, George: Lincoln in the Bardo - Shaffer, Mary Ann/ Annie Barrows The Guernsey Literary and Potato Peal Society - Smith, Zadie Swing Time - Stead, Rebecca When You Reach Me - Thien, Madeleine Do Not Say We Have Nothing - Towles, Amor A Gentleman in Moscow - Whitehead, Colson The Underground Railroad - Willis, Jane Tea at the Opalco and Other Stories This list still is, for me, an important document, because I remember what these books were about I would like to point out two books in particular The first book I read was Amor Towles’s A Gentleman in Moscow, and I found it on President Barack Obama’s summer reading list It provided perfect reading, for the events take place in a hotel in Moscow Thus, it invites the reader to enter a manageable space and place; I enjoyed visiting all the levels and nooks of this hotel, getting a sense of the surroundings Samuel Beckett’s Waiting for Godot was a really powerful read, because it made me think that the author may have experienced some sort of cognitive impairment himself It reproduced my experiences of bewilderment, disorientation, utter emptiness, and Literature as a Lifeline 369 10.2357/ REAL-2021-0018 existence with difficulties of owning a space and orienting in it. 2 Some books proved difficult, however. Madeleine Thien’s novel was confusing, for it had too many characters, and too many points of time, while George Saunders’ Lincoln was too sad to read. It is the only book I did not finish. Many of the reasons I binge read are easy to name Obviously, reading safeguards privacy There is very little privacy in the hospital so the bed is practically the only place where one can seal oneself off from others Reading provides entertainment and escape which is precious, for there is so little to do One becomes institutionalised quickly and days are structured by mealtimes and rehabilitation sessions Visiting a Moscow hotel, spending time with characters in different places and situations make a reader at least temporarily focus on other things than present pain, misery, and uncertainty That in itself is a great consolation I purposefully reread some books that I had liked in my childhood, for I thought they would provide special solace Indeed, rereading Frances Burnett’s Little Princess, for example, was like receiving a pep talk and reassurance that things will eventually get better There were, however, other, much more significant reasons for reading. For the first time in my adult life, I simply read. Reading was a lifeline, because one can just read - one can just be with literature Reading was wonderful, for I realised that I did not have to understand, interpret anything, or impress anyone, or scan the books for examples to use to in research or classes One way of conveying this experience is to say I breathed with literature At one point of time, I had nine intravenous needles stuck on my arms, and I thought of reading as streaming from the page in a steady flow of letters, words, sentences into my body Also, every now and then reading lulled me to sleep; it is nice to glide smoothly from a fictional world to a dream one. Literature is a lifeline, because it is a loving, accepting, and friendly dialogic other: language, form, and object relations with characters are there It provides shape and form in situations where it is difficult to perceive any shape and provide forms for experience Literature simply is, and that is its best quality 2 Later on, I was delighted to read in Maggie Nelson’s The Red Parts about her assignment to her students She made “everyone read Beckett, along with an essay about brain damage ” Maggie Nelson, The Red Parts: Autobiography of a Trial, (London: Vintage, 2007), 154 370 h eta p yrhöNeN 10.2357/ REAL-2021-0018 Works Cited Barba, Andrés Such Small Hands. (2008) Trans Lisa Dillman Oakland, CA: Transit Books, 2017 Babbit, Natalie Tuck Everlasting (1975) New York: Square Fish, 2007 Beckett, Samuel: Waiting for Godot (1954) New York: Grove Press, 2011 Burnett, Frances A Little Princess (1905) New York: Penguin, 2002 Carter, Angela Bluebeard (1977) London: Penguin, 2011 Donne, John “Meditation 17 [For Whom the Bell Tolls] ” The Works of John Donne, vol 3 Ed Henry Alford London: John W Parker, 1839, 574-575 Fowler, Karen Joy We Are all Completely Beside Ourselves New York: Plume/ Penguin, 2013 Gappah, Bettina Rotten Row London: Faber & Faber, 2017 Honeyman, Gail Eleanor Oliphant is Completely Fine New York: Penguin, 2017 Kalanithi, Paul When Breath Becomes Air New York: Random House, 2016 Lacey, Catherine Certain American States: Stories New York: Farrar, Straus and Giroux, 2018 Lee, Min Jin Free Food for Millionaires New York: grand Central Publishing/ Hachette, 2007 Mendelsohn, Daniel An Odyssey: A Father, A Son, and an Epic New York: Penguin, 2017 Nelson, Maggie The Red Parts: Autobiography of a Trial London: Vintage, 2007 Ng, Celeste: Everything I Never Told You New York: Penguin, 2014 Penny, Louise Still Life (2005) The Chief Inspector Gamache Series: Books 1-3 New York, Mintaur Books, 2014 --- Fatal Grace (2006) The Chief Inspector Gamache Series: Books 1-3 New York, Mintaur Books, 2014 --- The Cruelest Month (2007) The Chief Inspector Gamache Series: Books 1-3 New York, Mintaur Books, 2014 Pym, Barbara Some Tame Gazelle (1950) Boston, MA: Little Brown & Company, 2014 --- Jane and Prudence (1953) Boston, MA: Little Brown & Company, 2014 Pyrhönen, Heta Bluebeard Gothic: Jane Eyre and Its Progeny Toronto: Toronto UP, 2010 Robinson, Joan When Marnie Was There (1967) London: HarperCollins, 2002 Ryan, Marie-Laure Possible Worlds, Artificial Intelligence, and Narrative Theory Bloomington, IN: Indiana UP, 1991 Saunders, George: Lincoln in the Bardo London: Penguin, 2016 Shaffer, Mary Ann/ Annie Barrows The Guernsey Literary and Potato Peal Society New York: Random House, 2009 Smith, Zadie Swing Time New York: Penguin, 2017 Stead, Rebecca When You Reach Me New York: Penguin Random House, 2009 Thien, Madeleine Do Not Say We Have Nothing Toronto: Knopf, 2016 Towles, Amor A Gentleman in Moscow New York: Viking, 2016 Whitehead, Colson The Underground Railroad New York: Doubleday, 2016 Willis, Jane Tea at the Opalco and Other Stories Rickmansworth: TSL Publications, 2016