IMG_20170831_090744_494.jpgEra il 2011. Appena conseguito un Dottorato in Scienze della Terra, arrivai in Inghilterra, dove lavoro come consulente scientifica. Soffrivo da un po’ di tremori alla gamba sinistra, ma non me ne preoccupai. Quando comparve un dolore forte e insopportabile all’occhio sinistro, mi rivolsi ai dottori. Mi dissero che si trattava di una neurite ottica. Feci ulteriori indagini e, poiché i tempi di attesa in Inghilterra erano troppo lunghi, decisi di tornare in Sardegna. Cominciai così una serie di accertamenti, che segnarono l’inizio di questa nuova avventura. Era novembre. La diagnosi arrivò sotto Natale: Sclerosi Multipla recidiva remittente. Al tempo non avevo idea di cosa si trattasse e mi arrabbiai, pensai che i medici avessero sbagliato. Cerca in Internet e quello che trovai non mi piaceva, era deprimente, preoccupante, freddo. È per reagire a quel “freddo”, che ripresi a scrivere.

“Ho sempre amato la scrittura, ma dopo la diagnosi pensai che la scrittura potesse diventare per me anche uno strumento terapeutico. Trasformare in parole i miei pensieri mi aiutava psicologicamente. All’inizio i miei scritti erano molto crudi ed emozionali, spesso anche un po’ dark, forse perché stavo vivendo il trauma di sentirmi “diagnosticata”. Poi, cominciai a fare ricerche sulla SM. In rete trovai poco, non c’erano molti forum o gruppi sociali virtuali (e non) in cui si potesse conversare con altre persone con la stessa patologia. Fu così che mi venne l’idea di aprire un blog, che poi divenne un sito. Decisi di chiamarlo Flip Out 4 MS, perché il verbo “flip out” significa letteralmente flippare, sclerare in slang americano. Il sito nacque proprio così, da quell’urgenza terapeutica di condividere, con lo scopo di trovare “compagni di avventura/sventura”, che stavano vivendo simili emozioni”.

Le mie passioni spaziano dallo yoga ai viaggi. Adoro passeggiare sul lungomare, mangiare sano, leggere racconti noir, collezionare oggetti vintage, ascoltare musica e naturalmente il mio amato microscopio!

In 2011 I moved to England to get a real job, determined and fierce: a suitcase of dreams and hopes, a sufficient cultural background with a PhD, and a great bitterness towards what was supposed to be the country of my future. After the first six months of work I allowed myself a holiday in my hometown, at the end of which I found myself with a severe headache and subsequent loss of vision in the left eye. I returned to work and I took a few sick days for routine checks. The doctors told me that I had something that I had never heard of before: optic neuritis and they performed an MRI. The result left me with more questions than before: areas in the brain with “outbreaks demyelinating areas” and meanwhile I was told that the sight would return in time. I decided to go back to my country, where I spent five days in the hospital. After several tests and cortisone, the diagnosis came just before Christmas: Relapse Remitting Multiple Sclerosis. My reaction was one of total incomprehension.

I did not feel this was my diagnosis. My brain was convinced that it was a mistake, a diagnosis of some other patients, not mine. Then I gave up myself, the doctors gave me my first treatment, Rebif 22 (interferon beta-1a), and the time went so fast amongst inevitable ups and mostly downs, medical appointments in both England and Italy, so many conflicting opinions and concerns. Then because of excessive side effects, I changed medication and I went to Copaxone (glatiramer acetate). In 2011 I have created this website dedicated to all the MS-fighters around the world where I share my fears, thoughts, articles and also the stories of other MS patients.

During these years I have had a few new small lesions and relapses. I read much, I have written more, I met some wonderful people here in England and the same in various social forums that help all those who live together and fight this unpredictable disease, while I feel inappropriate at times, or sad or nostalgic. But I’m used to the cold English weather, to the few but precious sunny days, I am even used to the rain, to the life as a commuter and the smell of the wet soil. Sometimes when I’m sad I just think of the sea of my city and its warm and gentle sun. This is my life and I would not change with that of anyone else because there is always a reason to be happy, even and especially in the disease.

Interviste:

Vivibene: http://vivibene.org/l-autrice-di-real-stories-si-racconta/
Redattore Sociale: http://www.redattoresociale.it/…/Sclerare-per-la-sclerosi-i…
Sardinia post: http://www.sardiniapost.it/…/sclerare-la-sclerosi-stefania…/
2ANews: http://www.2anews.it/sclerosi-multipla-la-scrittura-e-arte…/
Scleroweb: https://www.youtube.com/watch?v=M8gMOrEdeUk

Le mie rubriche / My columns (NOT AT REGULAR INTERVALS):

Real Stories (in collaboration with vivibene.org)
MS treatments and research
Living with MS or YouTube videoclip
MS News on scientific research
Friday: Friday Horror (noir stories) for 2A News

For collaboration, advertising, or other inquiries feel free to contact me! Social links below! 🙂

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Logo: Graphics by Harry Kidd