Ti presento Tourette. Intervista a Daniela Giannoni
Vi starete chiedendo chi sia questa Tourette.
Tourette è entrata nella quotidianità di Daniela da qualche mese e lei sta imparando a conviverci.
Sia ben chiaro, non è una di quelle coinquiline che ti fanno trovare pronto il caffè, né tantomeno una di quelle che lavano il loro piatto dopo cena. È impaziente, nervosa, se decide di arrivare quando stai disegnando la tua linea di eyeliner, stai sicuro che combinerai un disastro.
Ancora poco conosciuta in Italia, la sindrome di Tourette viene scoperta nell’Ottocento dal neurologo francese Gilles de la Tourette, da cui appunto deriva il nome.
Ciao Daniela! Ti va di spiegarci com’è iniziato tutto?
Il tuo sappiamo essere un caso molto particolare, tu stessa dici di essere “una su mille”, poiché la sindrome si è presentata a quasi venticinque anni, è corretto?
«Non era una serata particolare, ma uguale alle altre. Ero seduta a cena con la mia famiglia, mi ero accorta già da qualche settimana che qualcosa non andava in me: il mio naso si muoveva ripetutamente, come se fossi un coniglietto (difatti lo chiamavo “il tic del coniglietto”).
Guardai mia madre e le dissi: “Mamma, continuo ad avere questo movimento involontario al naso”, lì per lì non ci preoccupammo in particolar modo, soffrendo già di ansia e di disturbo da stress post-traumatico (PTSD), pensavamo fosse magari un leggero tic dovuto, appunto, all’ansia.
Ma dal giorno successivo, la mia vita cambiò: mi ricordo che era la metà di ottobre, iniziai, ogni giorno, ad aggiungere sempre più tic, questa volta anche vocali, accompagnati da un piccolo grido, pugnetti sulle scapole, movimenti del collo e della mascella.
Andai a leggere su Google cosa potesse essere: tic ansiosi, tic passeggeri, Sindrome di Tourette. Avevo già escluso questo tipo di sindrome, anche per il fatto che avevo letto che iniziasse a comparire nell’età infantile per poi svanire nell’età adolescenziale o, a volte, te la portavi dietro per tutta la vita.
Ma una cosa è certa: più andavo avanti con il tempo, più questi tic involontari continuavano ad aumentare e a peggiorare, toccandomi anche gli arti inferiori, cadevo per terra ogni quattro o cinque passi. Insieme alla mia psicologa e psichiatra, decisi di rivolgermi ad un neurologo e così feci agli inizi di Dicembre.
Durante la visita, il neurologo rimase piuttosto perplesso, non solo perché i miei tic erano qualcosa di ingestibile, ma anche per il fatto che li dicessi in inglese.
Lì si accorse che era una questione piuttosto grave e mi propose un ricovero in neurologia, dove mi avrebbero tenuto sotto controllo 24 ore su 24.
Mi ricordo ben poco di quel “soggiorno”, se così possiamo chiamarlo: mi ricordo che feci molte tac al cervello, risonanze magnetiche e altre diverse visite, ma ero talmente sedata da medicine e vitamine, che non ricordo molto.
Dopo una settimana precisa, mi diedero la mia cartellina con la diagnosi riportata all’interno: Sindrome di Tourette in paziente, con ansia e disturbo da stress post-traumatico.
Il mio cuore smise di battere per qualche istante, per poi ricominciare ma sempre più veloce, cercai di respirare profondamente, di mantenere la calma.
Ci vollero un paio di giorni per abituarmi all’idea. »
Daniela, quanto sono cambiati la tua vita e il tuo rapporto con gli altri da quando convivi con la Tourette?
«Il 20 maggio, sono esattamente cinque mesi dal giorno in cui me la diagnosticarono; ammetto che dalla metà di dicembre, fino alla fine di marzo, la mia vita sociale cambiò rapidamente.
Non uscii di casa per quasi tre mesi, oltre al fatto che cadevo per terra ogni volta, non mi sentivo proprio in pace con me stessa. Mi sentivo schiavizzata, sempre controllata da questo burattinaio che sfruttava la mia debolezza, facendomi compiere questi tic involontari. Uscivo solo per andare a fare le visite di controllo dal neurologo e dalla psicologa.
Le mie giornate passavano o a letto, o sul divano a cercare di colorare mandala senza uscire fuori dai bordi.
Io ho solo due migliori amiche e con loro il rapporto non è cambiato più di tanto, ho sempre avuto il loro appoggio e sostegno per qualsiasi cosa, con loro tutto era molto più facile. Venivano a casa mia, avevo parecchi tic, ma non mi sentivo giudicata, non mi sentivo osservata. Pensieri che spesso mi venivano se avevo intenzione di uscire, anche giusto per portare il cane fuori: avevo paura del giudizio della gente, del che cosa potesse pensare di me, dei miei tic, dei miei gesti.
Mi chiusi molto in me stessa, ma avevo lo stesso l’appoggio dei miei genitori e di mia sorella. In casa mi sentivo protetta.
Ma, comunque, alla metà di marzo, decisi di fare un cambiamento: mi alzai da letto e decisi di cambiare la mia vita, anche perché, essendo giovane, non potevo sprecare tempo piangendomi addosso.
E così feci: mi comprai un girello, iniziai ad uscire, grazie alle mascherine i miei tic sono meno sonori, i gesti ci sono sempre, ma porto con me al collo una targhetta con su riportato: “Ho la Sindrome di Tourette, scusa se dovessi offenderti o fischiarti”, almeno sono giustificata e, devo ammettere, che non ho mai avuto momenti di totale imbarazzo o di persone che mi osservassero in modo malvagio o stranite.
Pensavo peggio, ma avevo torto. E sono fiera di me per averci provato. »
Molti si chiedono perché utilizzi involontariamente la lingua inglese durante i cosiddetti “tic”. So che è un argomento molto delicato, ti va di parlarne?
«I miei tic sono prevalentemente in lingua inglese, ogni tanto spunta anche qualche parolina in italiano, ma è molto raro.
Parlandone con una psicologa, siamo arrivate ad un paio di conclusioni: soffrendo appunto di PTSD, quando avevo solo quattordici anni, andai in Inghilterra, a Birmingham, in una vacanza studio per due settimane, lì rimasi vittima di violenze. Violenze piuttosto pesanti che mi portai dietro, senza dirlo a nessuno, fino a Marzo 2020.
Diciamo che, la mia testa, i miei pensieri, è come se fossero rimasti lì.
Un altro motivo, inerente ai tic in lingua straniera, può essere anche il fatto che guardo film, serie tv, documentari, ascolto parecchia musica, a volte leggo anche il lingua inglese. Spesso mi viene anche da pensare in lingua straniera. »
Secondo la tua esperienza, col tempo ci si abitua ai tic nervosi o resta sempre una condizione difficile da gestire?
«Soffrendone ancora da poco tempo, comunque sono quasi sette mesi che ho questi tic nervosi, sono molto difficili da gestire, anche perché, ogni tanto, ne escono anche di nuovi.
Non solo vocali, ma posso colpire muri, superfici o me stessa con le nocche della mano e farmi molto male, oppure ho iniziato da poco ad avere questi momenti in cui è come se avessi delle paralisi del sonno, ma da sveglia: sono assente con tutto il corpo, puoi farmi il solletico, puoi tirarmi sberle, ceffoni, pizzicotti, io sento tutto, ma non riesco a reagire.
Purtroppo, anche se provassi con tutte le mie forze a sopprimerli, i tic tornano più forti di prima.
Non li ho ogni minuto della giornata, ed è un bene, ma comunque trovo ancora adesso difficile il saperli gestire. Mi sembra una parola quasi inesistente; come ho già detto prima, chi è affetto da questa sindrome è un burattino, i tic sono il burattinaio che ci muove involontariamente. »
Una persona affetta da sindrome di Tourette, generalmente, riesce a condurre una vita autonoma? Ascoltando i tuoi video, so che esistono dei corsi professionali per apprendere dei mestieri, me ne parli meglio?
«Durante questi mesi, ho trovato parecchio difficile la convivenza a tavola, non riesco a tagliarmi il cibo da sola, volano coltelli, forchette, ogni tanto può anche succedere che, mentre sorseggio acqua, involontariamente, la sputi dalla bocca.
Riesco a vestirmi da sola, a lavarmi, faccio la doccia da seduta, coloro e disegno in modo piuttosto tranquillo: alla fine se trovi attività che ti rilassano, i tic sembrano diminuire.
Quello che non ho ancora provato a fare è cucinare, ma sono curiosa di mettermi alla prova: un giorno di questi potrei sperimentare e, perché no, magari anche riprendere le mie imprese eroiche!
La mia psicologa mi ha invitata a partecipare a dei corsi di formazione, saranno un paio di sedute dove ci spiegheranno il mondo del lavoro per persone come noi che farebbero fatica a trovarlo. Non è ancora certo al 100% che parteciperò, ma è una buona occasione per conoscere un mondo diverso da quello che vivevo qualche mese fa.
Alla fine sarà tutta esperienza e voglia di fare. Mi terrà più la mente occupata, anche le giornate stesse, integrandomi, nuovamente, nel mondo del lavoro. »
Sei un grande esempio di forza per chi ti segue, non solo per chi ha a che fare con questa sindrome, ma anche per chi lotta con l’ansia e la depressione, che tu conosci da oltre dieci anni.
Ad oggi sappiamo che patologie come queste sono ancora un tabù nella nostra società. Secondo te perché dire di essersi fratturati una gamba è facile e “normale”, mentre è ancora difficile dire di soffrire di depressione e/o stati ansiosi o anche di disturbi del comportamento alimentare?
«Devo ammettere che l’Italia è ancora molto indietro rispetto ad altri stati, specialmente su patologie, disturbi mentali, alimentari ed handicap di qualsiasi genere.
Il perché? Perché viviamo in una società con gli occhi foderati ancora di prosciutto, perché quando qualcuno vuole uscire dal proprio guscio per ammettere di avere un problema, una patologia o una sindrome, come nel mio caso, si viene subito attaccati dai cosiddetti “leoni da tastiera”, persone (scusate il termine) ignoranti, che pensano solo che chi soffre pubblicamente, lo faccia solo per ricevere attenzioni, ricevere più seguaci, più mi piace sui social e chi più ne ha, più ne metta.
Nel mio caso, ho ricevuto parecchi commenti di odio, mi accusavano di essere falsa, solo per il semplice motivo che i miei tic fossero in inglese o perché la Tourette è arrivata all’età di ventiquattro anni.
Io, ancora mentalmente instabile, davo molto peso a questi tipi di commenti, ma poi, grazie alle persone che mi sostengono, grazie alla mia famiglia e alla mia forza di volontà, mi sono convinta che non devo farmi abbattere da quelle pochissime persone che non credono in me, perché solo io e le persone che mi stanno realmente accanto sanno cosa sto passando.
I casi di bullismo e cyberbullismo accadono specialmente a persone che soffrono di depressione, ansia, stress, disturbi mentali, disturbi alimentari (molto sottovalutati, a parer mio).
Una persona che decide di mettersi a nudo, di ammettere di avere un problema, non è da offendere, ma è da ammirare, perché sta tirando fuori il meglio di sé per raccontarsi, per farsi conoscere e far conoscere il proprio problema.
Ma questo, alcune persone, non lo capiscono. »
Cosa diresti a chi ci sta leggendo e non trova il coraggio di chiedere aiuto?
«Io penso che, prima o poi, tutti avranno il coraggio di chiedere aiuto, perché è molto difficile salvarsi da soli; uscire dal proprio guscio per farsi aiutare è un passo molto importante per noi stessi.
Ed ogni essere umano ha i propri problemi ed è giusto parlarne, è giusto rendere partecipe gli altri del proprio dolore. »
Ritornando alla Tourette, in una IGTV ringrazi la sindrome perché ti ha dato la forza di esporti.
Cosa c’è, oggi, di diverso nel tuo mondo interiore? Possiamo parlare di una Daniela pre-Tourette e post-Tourette?
«“Grazie Tourette (ma anche Fuck You)” è il titolo del mio IGTV.
Diciamo che sì, la Tourette me ne ha fatte passare tante, ma la sindrome non la puoi gestire, quindi, mettendomi a nudo sul social, ho affrontato la mia paura più grande: essere me stessa.
Non è facile, lo ammetto, cercare di esprimere sempre positività, è dura, ma ci sto riuscendo: lo faccio sia per me, sia per le persone che mi seguono e che mi sostengono.
Non sono un’ambasciatrice, ma mi piace pensare e leggere messaggi che riportano il fatto che, grazie ai miei video, alcune persone, si sentono meglio, si fanno quattro risate per la mia autoironia, riescono a pensare più positivo e meno negativo e vivono al meglio le proprie giornate.
La Daniela pre-tourette, non avrebbe mai avuto il coraggio di mettersi a nudo così, di esporre quasi facilmente il proprio presente ed il proprio passato, anzi, sicuramente non ne avrebbe mai avuto il coraggio, per paura, appunto, di ricevere più odio che amore da parte delle persone, anche perchè sono sempre stata una ragazza molto chiusa, introversa, raramente parlavo di ciò che mi succedeva e, se lo facevo, era perché mi fidavo della persona con cui stavo dialogando, ma, ripeto, era molto raro.
La Daniela post-tourette, è una nuova Daniela, piena di gioia, di voglia di vivere, di spaccare il mondo e fare casino.
Che dire? Grazie Tourette per avermi fatto uscire dal mio guscio pieno di mostri e di tunnel di cui non riuscivo a vedere una fine.»
Catia Bufano
Vedi anche: Nomadismo digitale: ama il tuo lavoro e non lavorerai neanche un giorno della tua vita
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