Quattro chiacchiere con Maricla Pannocchia

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Siamo lieti di ospitare Maricla Pannocchia fondatrice dell’associazione Adolescenti e cancro. Un’associazione che si occupa di non lasciare soli i ragazzi nella battaglia contro il cancro.

Benvenuta Maricla, sono emozionata per questo incontro e già dalla prima volta che abbiamo parlato della tua associazione ho voluto offrire il mio contributo. Ho lavorato come biologo presso l’I.F.O a Roma che si occupa anche di cancro. Ho visto tante realtà diverse.

Maricla: Sì, immagino.

Samantha: le storie dei ragazzi di cui vi occupate possono diventare la vostra storia?

Maricla: Sono già la nostra storia, ognuno di loro la arricchisce, la rende unica alla propria maniera.

Samantha: Come si entra in contatto con i ragazzi?

Maricla: I lettori che vogliono inviare un messaggio a uno o più dei ragazzi autori delle storie presenti nella raccolta possono mandarcelo tramite e-mail all’indirizzo adolescentiecancro@yahoo.it e rigireremo i messaggi ai ragazzi. Abbiamo anche delle occasioni di volontariato, aperte principalmente alle persone della Toscana, per conoscere di persona i ragazzi. Ad esempio per “Adolescenti e cancro Summer Holiday” – la vacanza gratuita per 15 ragazzi/e che hanno o hanno avuto il cancro, che si terrà dal 1 al 4 agosto in Toscana – avremo bisogno di volontari che ci diano una mano e che potranno appunto conoscere di persona alcuni dei ragazzi.

Mariola associazione

Samantha: Quali sono le parole che non dite mai a loro?

Maricla: Cerco di essere sempre onesta nel parlare con i ragazzi e di farlo in maniera tranquilla e serena. Diciamo che non ci sono cose che non dico, ci sono però pensieri che tengo per me.

Samantha: E quelle che invece aiutano voi e loro nella vostra lotta?

Maricla: Non ci sono delle parole che mi aiutano particolarmente in quello che faccio, diciamo che è più che altro un atteggiamento mentale, un modo di porsi verso di loro che aiuta.

Samantha: Io cercavo sempre di interagire sfoderando il miglior sorriso. A quel tempo ero un semplice biologo che consegnava le analisi e parlava delle terapie. I miei pazienti erano principalmente persone adulte.

Maricla: Mi affeziono ai ragazzi, anche a quelli che sento “solo” via Internet o telefono, anche perché alcuni di loro li sento spesso. So che purtroppo a volte non si guarisce da questa malattia. Si mette in conto la possibilità di perdere i ragazzi, fa “parte delle regole”.

Samantha: E’ la parte più dolorosa, almeno per me lo era.

Maricla: Mi dedico all’associazione e ai ragazzi con anima e corpo, pur sapendo che un giorno alcuni di loro potrebbero non esserci più. Voglio fare tesoro delle esperienze, dei singoli contatti, degli insegnamenti e anche dei momenti spensierati. Credo che la consapevolezza del presente e del suo valore mi aiuti molto.

Samantha: Storie a lieto fine e storie che invece vi hanno strappato un pezzo di cuore.

Maricla: Per fortuna diversi dei ragazzi sono in remissione, alcuni sono prossimi ai cinque anni post-terapia. E’ un traguardo importante e io non posso non esserne felice. Allo stesso tempo ci sono stati diversi ragazzi che purtroppo sono diventati angeli; da quando ho aperto “Adolescenti e cancro”, nel settembre 2014, sei ragazzi non sono riusciti a sopravvivere alla malattia. Ci si ferma inevitabilmente a riflettere. Con alcuni di loro ho avuto pochi contatti con altri, invece, ero più vicina.

Samantha: Sono vicende che toccano l’animo.

Maricla: Sì. Fra i ragazzi che sono morti, la più grande aveva 25 anni. Si tratta di vite spezzate e quel che è brutto, secondo me, è che da adolescenti o giovani adulti si ha la consapevolezza di capire che cosa sta succedendo o sta per succedere. Questi ragazzi si sono appena affacciati alla vita, hanno cominciato a respirare tutte le possibilità e potrebbero imboccare migliaia di strade. Potrebbero diventare chiunque, fare qualunque cosa…

Samantha: Eppure…

Maricla: … a volte vengono stroncati da questa brutta malattia. Lasciano però una scia di ricordi, sorrisi, forza e messaggi di altruismo e amore per la vita.

Samantha: il significato della loro esistenza.

Maricla: Resta sempre però una vita spezzata.

Samantha: La famiglia dei ragazzi vi è vicina?

Maricla: Sono in contatto con le mamme di alcune ragazze e naturalmente sono sempre a disposizione se hanno bisogno di fare due chiacchiere, di un consiglio etc.

Samantha: Il ruolo dei genitori e amici nella lotta alla malattia.

Maricla: l’adolescente si trova in una fase della vita in cui muove i primi passi verso l’indipendenza dalla famiglia, e rispettiamo sempre quel loro volere. Una ragazzina, ad esempio, ha detto alla mamma “Accompagnami, ma tu non entrare”.

Samantha: E’ molto significativo.

Maricla: Ognuno di loro ha la propria storia, ma si nota che il cancro ha un impatto su tutta la famiglia, non soltanto sulla persona che riceve la diagnosi. La famiglia intera si arma per combattere contro la malattia, le abitudini cambiano, i rapporti cambiano (spesso s’intensificano).

Samantha: E gli amici?

Maricla: Nelle loro storie i ragazzi parlano anche di come hanno perso gli amici “sani”. La gente ha paura della malattia, non sa che cosa dire alle persone colpite da malattie così gravi.

Samantha: La paura rende immobili, a volte, non si riesce ad esprimersi.

Maricla: Come hanno scritto alcuni dei ragazzi, a volte si perdono degli “amici” ma se ne trovano altri che sono dieci volte migliori, e generalmente si riferiscono ad altri giovani incontrati durante il percorso con la malattia o alla fine delle terapie. Giovani che comunque hanno vissuto o stanno vivendo situazioni simili alla loro e che possono capirli appieno.

Samantha: Perché hai scelto di essere vicina a questi ragazzi e raccontare di loro?

Maricla: Lo dico sempre è stato un segno del destino. Sono una scrittrice e a maggio 2014 ho auto-pubblicato il mio secondo romanzo che racconta la storia di due amiche adolescenti, una malata di leucemia. L’idea per il romanzo mi è venuta in maniera completamente fortuita, chi scrive sa che spesso le idee vengono all’improvviso e senza alcuna ragione apparente. Durante la stesura del romanzo ho svolto delle ricerche sul tema del cancro nell’adolescenza e mi sono resa conto che questi ragazzi si ritrovano ad affrontare difficoltà e sfide proprie dell’essere dei giovani con un tumore, sfide che non sono le stesse affrontate dai bambini piccoli o dai pazienti adulti e anziani. Ho sentito di dover quantomeno provare a fare la mia parte per migliorare il supporto sociale e le occasioni di confronto fra coetanei di tutta Italia che hanno o hanno avuto il cancro e così è nato Adolescenti e cancro.

Samantha: E ci sei riuscita!

Maricla: Quando parliamo di oncologia, pensiamo raramente agli adolescenti e ai giovani adulti, per questo ho pensato di raccogliere le storie di alcuni dei ragazzi supportati dalla mia associazione e di creare la raccolta “Attimi di noi – storie di adolescenti con tumore” per dare loro voce.

Samantha: Ricordiamo che uscirà a Febbraio ed è gratuita.

Maricla: Sì.

associazione Mariola 2

Samantha: Il cancro oltre alla definizione scientifica cosa è per te? Desolazione, distruzione, o quale aggettivo?

Maricla: Non credo che sia possibile definirlo in un’unica parola, e forse non sono la persona più adatta a rispondere alla domanda visto che per fortuna non sono mai stata malata, ma se proprio dovessi farlo direi “pausa”. Una malattia come il cancro mette in pausa la tua vita, e anche quelle delle persone che ti stanno intorno. Credo che, allo stesso tempo, molte persone trovino forza proprio da questa pausa; quando si è fermi ci prendiamo il tempo di guardare per la prima volta quello che abbiamo intorno, di assaporare, di riflettere, di conoscerci e allora spesso la gente trova dentro di sé la forza e il coraggio per reagire e affrontare la battaglia.

Samantha: Gli adolescenti ai tempi delle emoticon e Facebook sono spavaldi, a volte prepotenti, affermano il loro carattere contrastando i genitori, cosa cambia quando si ammalano?

Maricla: Durante l’adolescenza tutti pensiamo di essere immortali, pensiamo di avere davanti un sacco di tempo, quello che ci sembra importante è il rapporto con i coetanei, le nostre passioni, l’allontanarsi un po’ dalla famiglia per trovare noi stessi, le uscite con gli amici, i primi amori. Una malattia come il cancro mette in pausa tutto questo, afferra le tue sicurezze e le getta al vento. Tutto cambia, il modo in cui vedi te stesso, gli altri e il mondo che ti circonda. Ti ritrovi a porti delle domande che nessun ragazzo della tua età dovrebbe porsi, prima fra tutti: “Morirò?”. Ogni persona è diversa e ogni ragazzo reagisce nella propria maniera ma in tutti ho riscontrato, oltre a grande forza, coraggio e positività, una voglia di continuare a mantenere un po’ di normalità nella propria vita, la voglia di non essere compatiti ma di essere trattati come venivano trattati prima di ammalarsi perché, comunque, il cancro non cancella la persona che sei. Tu resti tu, con le tue passioni, la tua personalità, le tue caratteristiche, anche se la tua vita diventa diversa, anche se il tuo aspetto fisico cambia.

Samantha: Ai tempi di internet magari molti contatti sono facilitati, ci si sente meno soli.

Maricla: Basta pensare al nostro gruppo chiuso su Facebook riservato ai ragazzi dell’associazione e a quello su whatsapp (gestito dai ragazzi stessi) che sono il primo scalino per entrare nell’associazione.

Samantha: La comunicazione è alla base di tutto.

Maricla: Io sono regolarmente in contatto con diversi ragazzi dell’associazione proprio tramite Internet che ci permette di ascoltarci anche a dispetto della distanza geografica. Internet ci aiuta per offrire un supporto sociale disponibile sia ai ragazzi che abitano nelle grandi città sia a coloro che abitano in paesini minuscoli.

Samantha: In un semplice click non si è più soli.

Maricla: E questo è il primo aiuto.

Samantha: Il coraggio potrebbe essere il loro tratto distintivo?

Maricla: Sicuramente. Questi ragazzi sono molto coraggiosi sia nell’affrontare la malattia sia quando non ci sono più possibilità di una guarigione. Sicuramente insegnano molto riguardo a forza, a positività e a come dovremmo affrontare a testa alta tutte le situazioni difficili, da quelle di poco conto a quelle più importanti. Questo però non vuol dire che questi ragazzi siano fatti di acciaio: come si può leggere anche dalle loro storie, tutti hanno avuto momenti di sconforto, dolore e a volte anche disperazione. Tutti però, ognuno con i propri tempi, hanno trovato il coraggio di reagire, di rialzarsi e di rimettersi in piedi per combattere la battaglia a testa alta e penso che qui stia il vero insegnamento.

Samantha: C’è chi si è arreso?

Maricla: Non penso che ci sia qualcuno dei ragazzi che si è arreso, neanche quelli che sono morti. A volte la gente dice che chi muore ha perso la battaglia, ma non penso che sia così. Una persona in salute, che si trascina da un giorno all’altro senza fare niente della sua vita, perde ogni singolo giorno. I ragazzi che muoiono per via di un cancro non si sono arresi, non hanno perso. So di diversi ragazzi che purtroppo non ci sono più e che hanno lottato fino all’ultimo con il sorriso sulle labbra, e durante la loro battaglia hanno insegnato molto alle persone che stavano loro vicino e anche a tante persone che li seguivano su Internet. Secondo me, tutto dipende da come vivi la tua vita, non dall’avere o meno una grave malattia potenzialmente letale. Come accennavo prima, ci sono un sacco di persone che muoiono (moralmente, psicologicamente) ogni giorno, che non vivono ma sopravvivono, e c’è una grande differenza fra le due cose. Queste sono le persone che si sono arrese.

Samantha: Noi non siamo gente che si arrende e continueremo a parlare di Adolescenti e cancro parlando delle loro storie con un articolo che parlerà ancora di loro in attesa dell’uscita dell’antologia Attimi di Noi.

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Ringraziamo di cuore Maricla per questo spaccato di vita. Nessuna vita è persa se ogni giorno abbraccia i propri sogni e i propri desideri.

 

Per avere maggiori informazioni al riguardo, visitate il sito dell’associazione e seguite la pagina Facebook.

 

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