My photography always returns when I have some free time ... or is that, I return to my photography.
My head needs to be a little clearer than it has been lately. Last week was particularly chaotic as I pulled off a few minor miracles ...
Today is Sunday, and I slipped out into the morning searching for coffee and ended up with a camera full of photographs.
I found the light exquisite and ended up staying out for hours, wandering in the medieval heart of Genova.
I love to go walking in the city. Sometimes in the early morning light, sometimes just before nightfall.
I noticed this 'gift-wrapped' dome a few weeks ago and photographed it, enjoying the surprise of it there on the skyline.
Last night though, my eye was caught by the way the setting sun seemed to be lighting it from inside. It almost appears to be on fire.
I've been busy, too busy to post it seems. Paperwork like my codice fiscale and a bank account, had to be organised. Then my work here, and the horror that has been moving my stuff from the UK. I learned a lot. And finding a new place to live.
However it's a blue-sky morning, here in Genoa, today. I must go out. There were puddles and reflections last night but it was a wee bit dark when I found them. And coffee, I am in need of good coffee.
Buongiorno!
I recently met, and photographed, a remarkable young woman called Ilaria. An 18 year old woman who lives with a rare genetic disorder called Friedreich's ataxia ... a disorder that requires more research that is currently happening. Research that requires funding, and so ... there is a Facebook page where you can donate for ongoing research, or sign up to attend fund-raising dinners, here in Genova.
I asked her to write of herself, so we could share her story with you. She wrote:
Let me introduce myself: my name is Ilaria. I suffer from a rare disease caused by a genetic abnormality which inflicts progressive damage on my nervous system. This damage will eventually lead to a loss of control of all the muscles in my body.
The abnormal gene was present at my birth however the disease was only diagnosed in August 2014. Up until that moment, I played many sports, experiencing difficulties and frustration in certain exercises but taking part anyway.
My mood was often affected by those difficulties, and when my disease was finally diagnosed, I decided I did not want to see anyone anymore.
However time passed and I began to understand that, in order to move forward and overcome the difficulties created by Friedreich's Ataxia, I needed to react and fight.
These days I am happy. I have made a decision to face the future with courage and determination. I have decided that each of us is different and that my genetic disorder is not a defect but a special feature. I need to be simply, and uniquely, myself.
That this disease should not be approached negatively but rather understood, accepted and, if possible, one day, defeated.
Ilaria.
Mi presento: il mio nome è Ilaria. Sono una ragazza affetta da una malattia rara, causata da un'anomalia genetica che comporta nel tempo un danno progressivo del sistema nervoso e di conseguenza una perdita del controllo su tutti i muscoli del corpo. Il gene anomalo esisteva fin dalla mia nascita ma la malattia fu diagnosticata soltanto nell'agosto 2014. Negli anni precedenti la diagnosi ho praticato numerose attività sportive notando però alcune difficoltà, specialmente svolgendo determinati esercizi. Molto spesso subivo crolli di morale e appena scoperta la malattia decisi di non vedere più nessuno. Successivamente mi resi conto che per andare avanti e superare qualsiasi difficoltà, è necessario reagire e lottare. Adesso sono serena con me stessa e sempre sorridente. Affronto la vita con coraggio e determinazione. Vado avanti con la consapevolezza che ognuno di noi è diverso da tutti gli altri. Nessuno è uguale a nessuno. Il mio non è un difetto ma una particolarità. Non devo adeguarmi a nessuno. Io sono semplicemente ed unicamente io. La malattia non deve essere affrontata negativamente ma anzi, deve essere combattuta, compresa, accettata e se possibile, un giorno, sconfitta.
Ilaria.
