A Personal Narrative: Living with the Experience of Aphasia, Verbal Dyspraxia and Foreign Accent

A Personal Narrative: Living with theExperience of Aphasia, VerbalDyspraxia and Foreign AccentSyndrome

Corinne Othenin-GirardThe MIECAT Institute Inc., Fitzroy, Victoria, Australia

This paper is a personal exploration of one woman’s lived experience with apha-sia, verbal dyspraxia and accent change following cryptogenic ischaemic stroke.I share insights into my experiences, especially of an emotional and cultural na-ture, after growing up multilingual in Europe and then living with communicationchanges in a predominantly English-speaking country (Australia) and followingreturn to Europe. My formal reflections commenced 15 years after the strokeand, following my previous studies in the medical field, multimodal visual artsand philosophy, were initiated in the context of postgraduate study emphasisinga multimodal arts-based, collaborative, experiential approach to reconstructingunderstandings of experiences, values and meanings. Central features of this per-sonal narrative include emergent, iterative enquiry and learning: emergent, in thatthe enquiry was open-ended, allowing for an element of surprise and the oppor-tunity to pursue unanticipated directions; iterative, in that it involved knowinglyexperiencing and conversing about what had been discovered in order to engagewith the process of continuous meaning-making. Following the enquiry, fellowstudents provided intersubjective responses to issues that touched personal re-flection on their part. In particular, I highlight one fellow student’s intersubjectiveresponses that touched me in return by providing especially pertinent understand-ing and images.

Keywords: qualitative inquiry, personal narrative, iterative reflexivity, aphasia, verbal dyspraxia, foreign accentsyndrome, intersubjective response, storytelling as enquiry, metaphors, humour in recovery

IntroductionIn 1994, as a European-born and raised multilin-gual speaker living in Australia, I had a cryptogenic(cause unknown) left middle cerebral artery is-chaemic stroke. This resulted in right-sided paraly-sis, aphasia (acquired language disorder), dysarthia(motor speech disorder), verbal dyspraxia (dis-order of articulation not due to dysarthria), dys-phagia (swallowing disorder) and ateretisma (ac-quired whistling disorder). This meant for me thatI couldn’t walk or move my right arm and couldn’ttalk, write, sing or whistle. I engaged in extensiverehabilitation, including speech therapy treatment.

Address for correspondence: Corinne Othenin-Girard, E-mail: [email protected]

In 2009, I enrolled in a two-year GraduateDiploma in Experiential and Creative Arts Practiceat the Melbourne Institute for Experiential and Cre-ative Arts Therapy (MIECAT; now The MIECATInstitute Inc.). My previous studies having beenin the medical field and multimodal visual arts, Iwanted to combine both areas. The final assess-ment was to write an academic journal article as iffor publication. So I chose the topic: ‘A personalnarrative: Living with the experience of verbaldyspraxia, aphasia and suspected foreign accentsyndrome’, which forms the basis of this currentpaper.

BRAIN IMPAIRMENT VOLUME 15 NUMBER 3 DECEMBER pp. 202–215 c© Australasian Society for the Study of Brain Impairment 2015doi:10.1017/BrImp.2014.24202

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LIVING WITH APHASIA, VERBAL DYSPRAXIA AND FOREIGN ACCENT SYNDROME

Methodological ConsiderationsThe MIECAT form of enquiry is an arts-based,collaborative, experiential approach that providesopportunities to reconstruct understandings of ex-perience, values and meanings (MIECAT mis-sion statement, http://www.miecat.org.au/). Theapproach is arts-based and multimodal in that ituses all art forms to bring out inner experiencing,and collaborative in that there is great emphasis oninterrelational exchanges, such as intersubjectiveresponses between students. Lived experience isactively made known through an iterative journeyinvolving art-making, talking, writing, listening,participating, reflecting and meaning-making. Theprocess involves cyclical enquiry, enabling multi-ple opportunities to revisit and reflect on experi-ences. The paradigms within which the MIECATapproach is located would be post-positivist (prob-ability over truth, approximate truth), postmodern(plurality of perspectives and ways of knowing,multiple truths), constructivist (seeing reality asco-created; Heron & Reason, 1997) and participa-tory enquiry (experiential encounter with what isthere; Heron & Reason, 1997).

Feelings of DissonanceI experience a strong aversion to some of the medi-cal words used to describe my state or my situation.These words are so clinically cold. For example,the word ‘aphasic’ gives me a strongly dissonantfeeling. It makes me feel nauseous. I refused, andstill am refusing, to take on that label. I am CorinneOthenin-Girard, and my identity rests with myselfand is not classifiable through clinical words per-taining to the stroke. In the beginning one doctorsaid to me that I would never be able to speakagain, that, at most, I would communicate withan electronic device, typing the words in and hav-ing a robot voice speak them out. ‘Aphasic’ wasthe terminology that he used. ‘A’ means ‘no’, and‘phasic’, from ‘phanai’ (Greek), means ‘to speak’.Even as I write this, I get such a strong feeling of in-dignation. The aversion I experience to this word,‘aphasic’, is extreme. I make myself taller, drawmy shoulders back, clench my jaw and strengthenmy body like a bullfighter.

AphasiaI don’t want you here!

You came in obscurityfiltering water of Letheinto the wine of Memnosynemade her forget.

I don’t want you here!Erato, Melpomene,

Polyhymnia,Calliope and Euterpelifted the spoiled glass.

I don’t want you here!With phial holding waterfrom Memnosyne’s riverThalia, Terpsichore, Clio and Uraniafrom umbrage unchained them.

For this multimodal account, I wanted to makea drawing with Aphasia in the foreground of mymind, but I had to do something else before be-ginning the drawing. That something was thismetaphorical poem. Memnosyne is the personi-fication of memory in Greek mythology. She isalso the mother of the nine muses: Erato – love po-etry, Melpomene – tragedy, Polhymnia – hymns,Calliope – epic poetry, Euterpe – music, Thalia –comedy, Clio – history, Urania – astronomy, Terp-sichore – dance. Lethe is the river in Hades fromwhich dead souls drank to prevent themselves fromremembering their past lives when reincarnated.Initiates were encouraged to drink from the riverMnemosyne, which gives back memory.

How does this fit my experiences? I was, andpossibly still am, traumatised by what happenedto me. Out of the blue, one moment – perfectlyhealthy, the next moment – stroke. I couldn’tspeak, sing or whistle and my whole right side wasparalysed.

As I was going to pick up my son up fromschool, I saw these windows propped against atree (Figure 1). I thought this image was an aptmetaphor for how I’m dealing with my changedsituation, and so I recorded it. I can talk intellec-tually about what happened to my speaking abili-ties. The continuing emotional impact is so great,however, that I can consider it only obliquely andintermittently. I haven’t faced the ‘Abgrund’ (Ger-man) – ‘abyss’. I sat face-to-face with the abysswhen it happened to me. But I was shocked, trau-matised really. In order to contemplate the abyss,I must remove, one by one, the windows protect-ing me from the elements of the Abgrund. At thismoment, by describing this, I seem to be letting goone of the windows. And copious tears flow overmy face. I stop writing and hold my forehead withmy hand and cry.

The metaphorical poem is another of the win-dows that I shift. In this poem I wanted to con-vey that I had lost my spontaneous and impromptuability to speak, to write and also to sing, though Iwill, for this article, concentrate on speech andwriting. But I still had other windows there. Itis rather an intellectual poem, coming from thehead. I couldn’t describe the sense I felt in myself

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CORINNE OTHENIN-GIRARD

FIGURE 1

(Colour online) Metaphor: The windows over the tree trunk (obscuring the ‘abyss’).

because, in the making of the poem, I didn’topen up to my grief. That’s where the Abgrund– the abyss – lies. On reflection, I can see thatI am mentally positioning myself under the label‘post-traumatic phase’, eventually intellectualisingagain. Why is the metaphor of the windows sostriking for me? Is it because if you pass or breakthrough, you will fall into the abyss? A window canbreak easily. I don’t want that. I’m being strong.As I’m writing this, I’m weeping again.

Use of Metaphor for the EnquiryI have used metaphors throughout this enquiry. Theuse of metaphors, as in the poem and other situ-ations (Lakoff & Johnson, 1999), gives me someprotection when the pain of the experience is toogreat even to articulate, let alone to re-experiencethrough concentrating on it. Take the metaphor of‘the windows over the tree trunk’: metaphors are,like those windows, slightly opaque. These win-dows direct me to the crux of the matter. In thatsense they are not masks that you put on your faceto hide what’s going on underneath. I don’t wantto hide myself, but I want to uncover things in my-self without being overwhelmed by the pain thatstill sits there. I continue on to pick up my sonfrom school, and I feel that the reflections I’m ex-periencing while I’m walking help my evolvingresponse to this enquiry. I have noticed that mov-ing, whether it is walking, being driven in a car,tram, train or bus, or being in an airplane, helpsme formulate ideas for art or, as now, for reflec-

tive writing. At this moment, this article is in theforeground of my mind. I do quite a bit of walkingdaily. It helps me move the subject along, to betterexplore different avenues and alleys in my mindabout my experiences.

MIECAT’s ethics application asked of me,‘What will you do to protect yourself during the in-quiry?’ I use metaphors, or, more specifically, I usemetaphors, the layers of which I lift carefully oneby one, always mindful that I don’t become over-whelmed by what could appear or what’s hiding inthe abyss.

Aphasia and My Reaction to HerIn my mind I had personified Aphasia, and I ad-dressed my poem to her. McNiff (2004) encouragesthe reader to treat images as person and dialoguewith them. In my mind I had a shadowy outline ofAphasia. I didn’t yet have the actual picture, but Italked to her, although I didn’t want her to talk backto me. This is imaginative variation, that is, varyingthe frames of reference and perspective (Mous-takas, 1994), which MIECAT encourages. It is apowerful tool: by making a sculpture or a drawingand then beginning a discussion or dialogue withthat something or somebody, one sheds light fromother angles in the enquiry. But I couldn’t bear hertalking to back to me. I am still disgusted with hertaking abode in my house. I gave my indignationfree rein in my mind. I then started to draw. I drewher side on, with no eye contact possible (Figure 2).Simultaneously I visualised what I would do to her

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FIGURE 2

(Colour online) Depiction of Aphasia.

and how I would cut her into little wedges when thedrawing was finished: ‘Cut her up and reassembleit!’ This I delightfully accomplished (Figure 3).

These are my inner responses, in key words andsentences, to ‘Depiction of Aphasia’ (Figure 2):

WavesLightningShadowsDarkeningAlgae blocking out the lightOpen mouth full of teeth about to swallow a

green sea animalAppearing out of nothing

In the following picture (Figure 3), I have cuta photocopy of the previous picture (Figure 2) intowedges and attached them in a new formation. SoI now have the two pictures next to each other: thedrawing and the cut-up drawing. I will leave thisfact simply standing, without analysing it.

These are my inner responses to ‘Depiction ofAphasia: New formation’ (Figure 3):

PinwheelButterflyEagleJetfighterWedgesWalking feet with bootsExploding house

Hand pointing magic wand emitting powerfullight

Opening a gate

I included the word ‘Aphasia’ in the title onlyas my last action, after writing the article forMIECAT. My speech therapist, who became a goodfriend, suggested that I could enlarge my initial ti-tle, ‘A personal narrative: Living with experienceof suspected foreign accent syndrome, by includ-ing ‘verbal dyspraxia’ and ‘aphasia’, so it wouldappeal to more people. My first response to herwas that I detest the word ‘aphasia’. With ‘ver-bal dyspraxia’ I was fine, but no way would I put‘aphasia’ in my title. I have to unclench my jawsas I am writing this. Now you know that I put her,Aphasia, in the title, but only at the very end ofwriting the article.

Humour in RecoveryThe third verse of my poem speaks of other muses(Thalia – comedy, Terpischore – dance, Clio – his-tory, Urania – astronomy) and how they have beenable to lift away the dark shadows. One year aftermy stroke, I enrolled at university in two subjects,History of Astronomy (hence Urania) and History(hence Clio) and Philosophy of Science.

I thought that I needed some broader languageexercise. I was fairly confident with speaking tomy neighbours or at the shop. Going to universitymeant not only lectures but also tutorials where I

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FIGURE 3

(Colour online) Depiction of Aphasia: New formation.

had to contribute. From Plato, Kessler and Galileo,to Kuhn (1957) and his ‘paradigm shift’, we wereasked to participate in discussion. And I achieveda good pass. I chuckle every time I think of it:my ambition, my hardheadedness, my success inpassing a difficult subject. Perhaps it is not so easyfor the reader to understand that kind of humour(Thalia – comedy).

It is humour that I employed in my reha-bilitation. For example, ‘ateretisma’, ‘acquiredwhistling disorder’ mentioned above, is a wordthat I made up. With so many heavy words, ‘cryp-togenic’, ‘aphasia’, ‘verbal dyspraxia’, I wanted tolift my spirit through humour. To go too deep intothose experiences can get too heavy. Or another ex-ample: I worked very hard in physiotherapy, suchas doing an exercise 50 times instead of the tentimes requested. I wanted to get better, I didn’twant to listen to the doctor’s gloomy prognostica-tion. He had me sitting in a wheelchair from nowon, was his clear meaning. Because of the massivestroke, that was all that I could expect, he said inthe beginning. So I was lying on the physiother-apy bench, when that doctor came in to see how Iwas doing and bent over my right leg because hethought 10° of movement was the absolute maxi-mum I could have mastered. But up came my leglike a thunderbolt, 75°!, stopping a fraction beforethe doctor’s nose. He quickly put his head back.Because I chuckled, he couldn’t help but laugh too.

Humour is very effective and helpful in comingto terms with a shocking situation like a stroke.Finding humour whenever possible is one of theways to escape the gloominess of the aftermath ofa stroke.

My Voice, My Identity and ForeignAccent SyndromeMy identity is very closely linked with my abil-ity to speak several languages. I know myself as aperson who has a strong affinity with speaking lan-guages: German, Swiss-German, English, French,Italian and Spanish. My very first language wasFrench, but after a few years our family spokeSwiss-German so I consider Swiss-German as mymother language. First I lived near Zurich and sohad a Zurich dialect, and then at age 14, we movedto Basel Land and I soon acquired a Basel di-alect. For us Swiss, dialect serves as an identitycheck. We can immediately say from which partof Switzerland the other person comes. When theother person can’t speak any of the Swiss dialects,we are quick to detect their nationality just by lis-tening to their speech. In all my other languagesI had no easily detected accent, that is, a neutralaccent.

After the stroke I had to learn to pronounceevery letter and practise words by combining the

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sounds. As I was in Australia, I did speech therapyin English. My recovery from the stroke is stillongoing. From a time when I could not talk atall, I have come a long way through exercise andpractice, so now I can say that I communicate wellenough. In this context, I mean I have a fixed accentin all the languages I speak, not an accent I canchange at will, as I could before the stroke. When Italk, for example, in Swiss-German, Swiss peoplewill offer to speak in High German, English orFrench, because they detect a foreign accent in mypronunciation. Some people seem to think it’s likea French accent or an English accent, but when Ireply in French or English, still with this accent,they are quite puzzled.

That’s why I suspect that I have foreign accentsyndrome (FAS): ‘ . . . a rare motor speech disordercharacterised by the emergence of a pronunciationwhich is perceived as foreign’ and ‘ . . . associ-ated with various alterations in the fine executionof speech sounds which cause the impression offoreignness’ (Moreno-Torres et al., 2013, p. 520).My clinical picture seems to coincide with theaetiology of FAS, which includes vascular braininjuries, and also appears similar to the speakerdescribed by Moreno-Torres et al. (2013), in thather changed speech production was similar in bothher languages and singing. FAS may be seen asan emergent stage of recovery from more severespeech disorders (Moreno-Torres et al., 2013), sug-gesting transience. I can only hope that it is tran-sient. This ‘transient’ feels like a never-endingstage. Moustakas (1995) speaks of the mystery oftransition. I, for myself, cannot come to see themystery of this at all. I constantly have to explainwhy I have an ‘accent’. I sound like a crackedrecord. I can do ‘the explaining bit’, and then usu-ally I am classified as ‘disabled’. And from thenon, when I dress well and go, for example, to ahairdresser, as most people do, I encounter stereo-typed responses from those people: ‘Oh, YOU lookWELL’, with the undertone that disabled peopledon’t usually look smart. That attitude makes myblood boil! Anger rises up in me. But why shouldI expose myself to that attitude over and overagain?

I can tell a white lie. For example, in AustraliaI can say that I come from the French-Swiss partof Europe. And in Switzerland I can say that I wasin Australia for 23 years. Then I have to sit andendure the same ‘cheerful’ reply, ‘Ah, I can tell,you have lost your Swiss dialect a bit!’ followedby a chuckle. You can see by my tone, I’m not at allamused at this. This ‘transient’ phase has no silverlining, or mystery to my taste.

In my mind I am still the same as before. I’msitting here, rubbing my hand over my forehead,

eyes closed, right knee over the left, shallow breath,abdominal muscles tensed. I become incensed bypreconceptions people make and act on when theycommunicate with me. They have a, ‘Can’t speakwell, therefore must be . . . ’, attitude. This as-sumption derives from my accent, which I have inwhichever language I speak, and from an intermit-tent hesitancy when speaking. For example, in thefirst few years after my stroke, when I began tospeak again with lots of word-finding pauses andpronunciation difficulties, I used to endure peo-ple shouting at me. Now they do other things thatmake me angry, such as feeding me words andspeaking slowly and with grammatical errors. AsI have said, I don’t want to be in constant tran-sition. Not this way. I know who I am. I am notwhat people conceive me to be. These two enti-ties – reality and misconception, are in conflict.Sometimes I can even laugh at people’s ignorance.But mostly it hurts me tremendously. I still haveno single solution as to how to deal with peo-ple’s preconceptions. I’m stuck in the transitionphase.

The more I use a language, the more wordsand expressions I remember. I have trouble differ-entiating in my speaking the sounds, ‘s’, ‘sh’, ‘j’,‘ch’ and ‘g’. Tiredness exacerbates this difficultyand also causes me to experience lengthy pausessearching for a word or an expression. I can seein people’s faces when they have trouble under-standing me. Quite often they come a bit closerand scrunch their eyebrows together. I catch my-self then and try to carefully pronounce every word.Yet when I’m fired up about something, I can beastonishingly eloquent.

I also had to learn to write again. My speechtherapist, as one of many exercises, asked me towrite sentences with every word she put on anA4 page. To make the exercise more interestingand fun, I composed little stories with the words.I used humour to raise my spirits and found it manytimes.

A Fairy Story or Perhaps More: TheWolf, the Fox and My VoiceOnce upon a time, there was a young womanwho could speak many languages. From sunriseto sunset, she joyously made use of this facility,speaking these languages easily and without anyhesitation wherever she went. She would trans-late when someone with a different mother tonguewas in a pickle because they couldn’t understandthe language. She was happy to do this, to speakto different people from other countries in theirlanguage.

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The wolf was always on the lookout for newthings that he craved absolutely. His unquenchablethirst to speak many languages continued to growwhile he listened in secret to the young woman. ‘Iwish I could speak so well, so many languages andno accent’, thought the wolf. He for sure couldn’ttalk properly, only a few sentences that he hadpicked up from vagrants. He was certain the lackof proper speaking was the downfall of his uncle,the wolf that made Little Red Riding Hood famous.If only he could steal the voice of that woman . . .

‘Hello my dearest wolf, don’t you rememberme? I’m Foxy!’ said the fox, who had been ob-serving the wolf. ‘Isn’t that music to your ears!You wish you could do that, too? I know how youcan do it, how you can exchange your voice forhers.’

‘What do I do then?’ asked the wolf.The fox whispered, ‘Well it’s tricky. You have

to wait till you see her going to the fountain to coolherself, and then quickly drink from the water atthe same time. You have to say, Voce mutandis,and drink three sips from the fountain. That willdo it.’

The wolf was tremendously happy to have away to acquire that voice and did everything the foxhad told him. The young woman was even amusedthat the wolf wanted to drink from same fountain.‘No shyness’, she thought. When she heard himsaying, Voce mutandis, it was already too late. Thewolf had her voice, and she had his voice. At firstit was tremendously hard for her to say anythingat all. She could think in all the languages as be-fore, could understand everything, but she couldn’tspeak or write them, for no one has ever seen awriting wolf.

Now the wolf, with that beautiful voice, hadan identity crisis. The other male wolves made funof him, and the she-wolf he fancied told him thatshe preferred a wolf with a male voice. So whenthe wolf and the fox crossed paths again, the wolfcomplained about his situation.

‘Yes that is tricky’, said the fox, ‘and what’sworse, you can’t get your voice back by using themagic words, Voce mutandis. But I know what canbe done.’

The wolf wanted to beat the daylights out ofthe fox for giving him that voice, but he listenedbecause the fox was suggesting a way to get hisold voice back.

‘I will use the magic words, as you have done,so that I can give the woman my voice. In exchange,I will get your voice’, the fox said. ‘I cherish myvoice with manifold accents, it makes me sooosophisticated. But for you, I will give up my voice.It will make me sad, but you are depressed and weare good friends, so that’s why I do it.’

The wolf said, ‘But then you’ll have my voice,and I’ll still have that voice that doesn’t suit me,and . . .’

‘Wait, wait, I haven’t finished yet’, the fox in-terrupted, ‘Because we haven’t yet changed voicesbetween the two of us with the magic words, wecan still do it. You’ll have your voice back, and I’llhave the woman’s voice. I want nothing from you,for the moment. But you know the woman’s voice,without any accent, it is downsizing my identity.It’s going to take quite some time to get used to.But’, said the fox, ‘when the time is right, I willcome to get my reward from you. Is that a deal?’

‘Yes, the deal is good, so let’s get on with it.I can’t tolerate the situation of my voice for oneminute longer’, said the wolf in a fluster.

So the fox was true to his word. After the magicincantation, Voce mutandis, was performed twicemore, the wolf had his old voice back and the wilyfox was the proud owner of the woman’s voice withwhich to speak many languages with no accent andto sing beautifully.

Storytelling as EnquiryThrough writing this story, The Wolf, the Fox andMy Voice, I experienced an incredibly strong reac-tion. In talking about the wolf, the concept ‘wolf– stroke’ opened up many emotions and sensa-tions for me. I started to cry, and all my body feltincredibly heavy. In recounting it, I can feel sim-ilar sadness and heaviness in me. In writing thisstory almost from the wolf’s point of view, I haveengaged in imaginative variation. I gave the wolfand the fox a voice, which I didn’t do with Apha-sia. Yet I didn’t write much about the feelings ofthat young woman: how she felt suddenly havingher voice gone. I had to protect myself from thoseabysmal feelings. To go down into the blacknessof emotions, I couldn’t do it.

Yet I had the wolf and the fox converse abouttheir likes and dislikes of their voices. I threadedhumour into this account as well. I didn’t want thewolf to be happy with his ‘stolen goods’ (strokeas ‘thief’; Mitchell, Skirton, & Monrouxe, 2011),so I came up with a way to hurt his vanity. I cansee a parallel with how I treated the depiction ofAphasia: ‘Cut her up and reassemble it’. Aphasiaand the ‘wolf-stroke’ did HURT ME, and now Iwanted to hurt them back. As I formulated thisthought, tears welled up. I needed metaphors to letmy anger out on the enciphered entity. I’m left witha diagnosis of cryptogenic stroke because doctorscould give me no reason for it, and that is incredi-bly hard. I found myself asking over and over whatthe reason for the stroke could have been. Becauseall the doctors said there was no known physical

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reason in my case, I started to think that I caused itmyself psychologically. I thought that I had willedmyself to have a stroke from built-up guilt. In thefirst few years after my stroke, such thoughts re-curred frequently. Now I have learned to discardsuch thoughts; they are not conducive to my gettingbetter and are too restrictive.

When I started to read out my story, The Wolf,the Fox and My Voice, in the last MIECAT inten-sive, I began to cry. Unable to go on, I asked afellow student to continue. I wept throughout thereading. It is one thing to commit a personal storyto paper, but quite another to read it aloud in front ofpeople. An amplification of emotions and feelingswithin oneself seems to happen at once. Writingsomething down is a first step, putting thoughts intowritten action. Now I can burn them, throw them inthe rubbish or simply put them it in a drawer out ofsight. Through having done the writing, I have letmyself re-experience these events and emotions,to a certain extent engaging in a reflexive account,but then to read my narrative aloud and hear myown voice, in front of a group of people, that’s astep further. Such an experience opens a way foremotion to well up, and in reading my story, I wassuddenly overwhelmed by my emotions. I openedthe door to the pain that I feel about what hap-pened to me. At the moment, while writing this,I have tears in my eyes. I have, in my recovery,concentrated on getting better physically. I wantedto walk and talk as soon as possible and to be aperson whom you couldn’t tell had had a strokewhen seeing me for the first time. And because Iwas not offered a psychologist to talk with duringmy rehabilitation (perhaps lost in my rehabilitationplans), I bottled up my pain. It was safer to do so.All the grieving for what I’ve lost was still withinme. So when I started to read out the story, it waslike opening the door to that grief which started tobubble over. Tears ran down my face, I wept andcould not continue. I sensed pain all over my upperbody. That’s when I asked someone else to read outmy story for me.

Reason and Hawkins (1988) speak of story-telling as enquiry. When I tell a story, I expressmeanings of experiences. I communicate mean-ings – meanings that didn’t seem self-evident whenI wrote them down but that seem to sprout forthwhen reading them aloud.

Intersubjective ResponseAs a response to my story being read aloud, othergroup members were invited to provide intersub-jective responses. MIECAT places great value onthese responses, in which group members reply toaspects of the person’s enquiry that have touchedthem or given food for thought and action. I want

BOX 1 Translation of Figure 4.

Eh! Tu ne m’a pas vu? Hey! Didn’t you seeme?

Je suis l’oiseaux dans toncoeur.

I’m the bird of yourheart.

On m’appelle ‘courage’ou ‘Beaute’,

They call me ‘Courage’or ‘Beauty’,

on m’appelle incroyable – They say I’m amazing –parce que je suis! For I am!Did you know I was here? Did you know that I never

left you?The magic.La magia delle parole e

sempre con te.The magic of words

(speech) is alwayswith you.

to mention an intersubjective response I receivedfrom Alexandra that touched me in return. Alexan-dra wrote her intersubjective response in three lan-guages: beginning in French, switching to Englishand finishing in Italian (Figure 4). The translationof Alexandra’s words is shown in Box 1.

What Alexandra didn’t know was that, espe-cially when I’m tired and searching for words, Imay remember the searched-for word in anotherlanguage, which helps only when I’m in the com-pany of other appropriately multilingual people. Imade a drawing 2 years after the stroke (Figure 5),wanting to show what it means for me not beingable to speak one language completely and unin-terruptedly.

Alexandra mentioned, ‘parce que je suis!’ Justthe month before the stroke, I recorded a songthat I composed myself called ‘Je suis, qui je suis’(Box 2).

I feel a multitude of sensations. I hold back mytears and the sensations, but I can’t. I’m tired. I restmy left cheek in my palm and lean again the backof my chair.

My sculpture (Figure 6), completed 7 years be-fore my enrolment at MIECAT, depicts part of theAbgrund – abyss – that I felt. The stroke robbedme of my voice. The experience is still intenselypainful. My scout nickname in Switzerland was‘Lerche’, meaning ‘lark’. The bird has its heartpierced, but Alexandra lifted the bird up and gaveit a voice, speaking to me. Magic.

Searching for WordsA Japanese tanka poem, or ‘short song’, con-sists of 5 lines with 5–7–5–7–7 syllables and uses

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FIGURE 4

(Colour online) Intersubjective response: ‘The magic of words (speech) is always with you’.

personification, metaphor and simile to allow thereader to visualise the writer’s description andemotions. My poem is based on the tanka form:

Perceptions make theirappearance, thought Hume cheeryinfinite melangemind a kind of theatreCommedia dell’Arte?

I feel there is Commedia dell’Arte played onmy stage: characters there one moment but gonethe next. Words come and go, glide away, just asHume (1739–40) described. I know they are there,in my mind, but where? I search everywhere toretrieve a word, sometimes several words. It is asif I’m on a word hunt. I can’t hear what the wordsounds like, but I know it’s there because I recentlyheard it in a discussion or used it myself. But for themoment the words I search for have, to all intentsand purposes, disappeared.

Reflecting on the Search for a Word:Phenomenological DescriptionI want to employ a word that I had two momentsago on my mental tongue. Now it is gone. Inthoughts, I want to find the word that has hid-den itself from my consciousness. I’m visualising

entering into a vast bulbous space with tentacles. Ihave to venture into the tentacles and feel my wayaround in them, fishing for the word. I don’t havethe sound of this word in my mind’s ear, so I can’thear it yet. All the while I’m actively seeking inmy mind, I press my tongue tightly to the floor ofmy mouth, clench my jaws and direct my eyes tothe left and up or just to the left. I’m breathingshallowly. My body is tensed overall, like a caton the hunt. I try on shapes and compare them tothe sensed shape of the searched-for word. I stillhaven’t got it. Then I jump on to another wagonthat takes me to the situation where the word wasused, emotionally laden. Now I pinch my chin. Fora moment I was really close. I’m sure it starts with‘r’. Now I have an ‘other word’ that is strongly re-lated to, and caused by, the searched-for word. Atthis point I would try to tap the memory of otherpeople around me: I would give a roundabout de-scription of the word and hope the person wouldretrieve it. At this very moment I’m alone, but I’msitting in front of my computer and can use thecomputer’s memory. I’m typing a description ofthat word: asbestos. I feel an immediate great re-lease of all the tension, from my head down, anintense feeling of relief and elation.

In writing, when I don’t find a word in mymind, I search on the computer and have, aswell as the Word document I’m writing, a dictio-nary, a thesaurus, a German–English translator and

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FIGURE 5

(Colour online) Loss of fluency in any language. Translation: The effect is (French) not much (German) but (English) theauthor (German) would like to maintain (English) that it seems (Italian).

sometimes a French–English translator, in all, abusy screen.

Opening up myself in the EnquiryI’m reading Researching lived experience: Humanscience for an action sensitive pedagogy by MaxVan Manen (1990), in which he states that phe-nomenological research encourages a person to re-learn, to look afresh and to totally immerse them-selves in their experiences. As I focus on my ex-periences with changed speech, I can feel myselfopening up. I envision this opening up more likea circle or a rainbow than having a lineal A-to-B-to-C form. It is the rainbow of thoughts thatI became aware of, an opening up into manifoldthoughts while being present to the experience. Isee, think and sense myself following a network

of thoughts that interweave. In my mind I simul-taneously mull over Van Manen’s quotation fromSartre (1956), ‘It is my body as it is for the Otherwhich may embarrass me’ (Van Manen, 1990, p.25), and, exchanging ‘body’ with ‘speech’, knowthat here lies a truth for me. I feel embarrassedabout the way my speech is: knowing that I knowhow to speak but having something else come outof my mouth. I know also that, at my son’s school, Igot an awkward feeling about the way the teachersand principal behaved towards me and my speechdifficulties: that teachers wanted to put my son inan ESL (English as a second language) class, notbecause he needed help with English, but becausethey thought that, due to my ‘poor English’, hecouldn’t learn it at home. So he was classified be-cause of my deficit. The speech problem placed aburden on me, so that literally I sensed a weight

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BOX 2 Je suis, qui je suis

1. Quand je suis toute entierement moi-meme When I’m totally myselfQuand je n’essaie pas d’imiter quelqu’un When I don’t try to imitate somebodyDonc je me sens tout a fait a l’aise Then I feel completely at easeJ’eprouve un douceur I sense a softnessCe qui drole, c’est qu’a cause de cela What’s funny, that because of thatJ’aime tout le mode autour d’moi. I love everyone around me.

2. J’me demande (alors) comment ca peut s’passer I’m asking myself how comeC’est bien quoi qui me fait tant changer What makes me change that muchMais y’on a point d’reponse a cela But there is no answer to thatPersonne ne peut m’expliquer Nobody can explain to meCe qui ce fait dans mon interieur What happens inside meQuand je me trouve mois When I find myself

3. la la la . . . . . . .la la la . . . . . . .Si tu me pose la question If you ask me the questionDis-mois, t’es qui alors Tell me, who are you thenFaut qu’tu t’contente de cette response Have to be happy with the responseJe suis qui je suis I am who I am

on my back when I went to the school or to otherplaces where I sensed people’s changed behaviourtowards me.

Another colour of the rainbow is remembranceof the sensation I had at the last assembly at myson’s school, when I affirmed to myself that I wasas good as everybody else, speech difficulties ornot, and would no longer assume the burden andthe ‘weighing me down’ feeling. I felt taller, sens-ing my back straightening. My worth is not dimin-ished. I can speak up when I want to and talk aboutmy speech difficulties on my own terms, withoutthe exchange of heaviness.

A few weeks after the assembly, I was given an-other gift, a further intersubjective response, fromAlexandra: ‘To help you go lightly through life′,it says on the outside, and inside is an armbanddelicately made from birds’ feathers (Figure 7). Ihadn’t mentioned anything to her about the feelingof burden of my shoulders, yet she sensed some-thing, a pre-verbal sensation, and made this gift.She explained it to me as being a ‘babiche’, froman Alaskan tradition where they are made withfeathers of white snow geese. She has substitutedpink and white feathers from galahs (rose-breastedcockatoos), which carry the energy of joy.

Use of Dream in the EnquiryA few days after formulating the subject of thisarticle, I had a dream at the onset of sleeping.

I was in a huge library with books from bottomto top and a rolling ladder, similar to the libraryin Montfery’s (2009) animated feature film Ker-ity, la Maison des Contes (Eleanor’s Secret in theUK and USA, official US trailer for Eleanor’sSecret: http://www.gkids.tv/eleanor/). The film’scentral character Nathaniel, a young boy who isnot a confident reader, is left a library of booksby his Aunt Eleanor. He discovers that the booksare the originals of all the famous fairy storiesand, unless he can protect them by reading amagic inscription in the library, the characters andtheir stories will vanish from the world, so thatonly ‘real stories’ will remain. The library of mydream was tinged red-brown, as in the film. Iwas standing on the ladder, high up, and it wasmoving quietly. What looked like books from fur-ther away were now words, and I was search-ing as you do in libraries, but I was looking forwords. I’m amazed at being in a library just forwords.

Closing ReflectionThis personal narrative about my speech difficul-ties has involved travel through some rocky terrainwith torrents of emotion. Yet there are places stillnot visited. I went on a pilgrimage in solitude andfound on the way some co-travellers. SometimesI jumped over holes, sometimes looked into the

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FIGURE 6

(Colour online) Pierced heart: without voice (bronze on granite, by Corinne Othenin-Girard, 2002).

abyss. I got to know more about myself, as you doon a pilgrimage.

The narrative and the writing of the story, TheWolf, the Fox and My Voice, gave me a release ora letting out of some of the immense grief andpain that I felt. Through writing this narrative ac-count and re-reading it, I have come to know that Ihave not accepted my changed voice, which can bepositive or not-so-positive: positive, because I stillwant to improve my speech and vocal capabilities;not-so-positive, because of the so-called accent andmy need to constantly explain myself, which in turnseems to be excusing myself for something I didn’twant but now have and am embarrassed about. Thisstill weighs me down. The ‘transient’ phase – themystery of transition that I want – is in my learn-ing how to cope and work with the changed voice,WITHOUT just accepting the unchangeability ofit.

Metaphor has provided a valuable focus andprotection during my exploration and narrative, so

that my closing message to clinicians would echothat offered by Ferguson et al. (2010, p. 695): ‘At-tention to the use of metaphoric expression mayoffer clinicians a window into how others involvedin the collaborative therapy process are construct-ing their experience’.

AcknowledgementsI would like to thank my fellow MIECAT studentAlexandra for permission to include the words andimages from her intersubjective responses. I wouldalso like to thank and remember my speech ther-apist Robyn Dower (1955–2012) for contributingher expertise to my rehabilitation and for her com-mitment to, and faith in, having me share my storymore widely. With thanks also to Katherine (Katie)Kirby for assistance in preparing the manuscript tosubmit for publication and in locating additionalreference material.

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FIGURE 7

(Colour online) ‘To help you go lightly through life.’

Conflicts of InterestNone.

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Documents

A Personal Narrative: Living with the Experience of Aphasia, Verbal Dyspraxia and Foreign Accent