I am Claudia Cominetti

My mother had to quit her job to take care of me, whereas my father had already retired and my sister was already married.  In other words, our lives were turned upside-down in some way and we had to find another path in life. 

My name is Claudia Cominetti.  I’m 44 and live in Arona, a pretty town on the shores of Lake Maggiore in Northern Italy.  I was diagnosed with ALS in the late summer of 1997, when I was 20 years old.  This fateful diagnosis was made after I had suffered the early symptoms of the disease such as exhaustion, weakness in the upper limbs and weight loss during the spring of that same year.  These symptoms alarmed my family and me to the point of going in for some testing, but a diagnosis was not made at that stage. 

However, going about my normal everyday activities was getting more and more problematic:  turning keys in the lock, opening a bottle and combing my hair were becoming impossible tasks.  The orthopaedist who had previously examined me suggested I see a neurologist; I was admitted to hospital, but without any particular outcome – only various assumptions that led to an ordeal involving additional tests and examinations. 

The first certain diagnosis, albeit one made with a question mark considering my young age, was made by the Istituto Neurologico C. Besta di Milano in August 1997.  I still remember the drawing that the neurologist made to explain what was happening to me.  The full picture actually dawned on me only a few months later when I visited a leading centre for the treatment of ALS, where Dr. Mazzini, who is still my neurologist, prescribed further testing – ultimately confirming the diagnosis and short life expectancy.  It came as a harsh blow for myself and my family, with them being bereaved for years; whereas I experienced disbelief and reacted through a sort of rebellion that led me into setting off on a battle that I am still engaging in.  

The disease did not stop its course and inexorably continued its rapid progression:  to the point that soon I was no longer able to take care of myself, but could only ask for help using my voice – something that I still do. The following spring, along with my mother and sister, we decided to set off on a trip that we had been dreaming of – to Mexico, destination Cancun, to the land of the Maya civilization.  My legs were beginning to feel weak during that period; I fell repeatedly and this obliged me to move around on a wheelchair. 

Our stay in a village in Playa del Carmen was only the first of a series of unforgettable holidays.  Clearly, travelling has been a pleasant opportunity during all these years – one that was granted to me by ALS.  In fact, my condition made it impossible for me to work and I interrupted my studies.  My mother had to quit her job to take care of me, whereas my father had already retired and my sister was already married.  In other words, our lives were turned upside-down in some way and we had to find another path in life. 

Luckily we came upon extraordinary people along our way who (thanks to their perseverance, availability and kindness) learned to manage such a complicated situation together with us.  First and foremost the gymnastics teacher who took care of me until his passing, helping me keep my joints and body free from stiffness due to atrophy, in addition to offering me his continuous moral support. 

No less than my friend Samanta who has always been at my side, my companion at concerts, entertaining events, etc.; and all the many other people who come in succession during my life made up of highs and lows. The psychotherapy and educational support that accompanied me during that period allowed me to grow and discover that I am a woman who still has a lot to offer.  So much so that at the age of 32, I decided to resume my studies in a new field, ultimately obtaining a degree in Pedagogical Advice for Disability and Marginalization – a fantastic experience that I hope will allow me to gain success and gratifications.  All in all my young age, the support of my family and specialists have helped me in never giving up and considering a different lifestyle – a dignified one in any case.  

To date, I am trying to set up an established career as a pedagogical consultant, with the aim of offering support to those in need.  But travelling still stands as an important activity in my life:  in addition to Italy, I’ve visited Africa various times (Sharm El Sheikh and Djerba), Europe (France, Spain and Greece), Asia (United Arab Emirates) and have also travelled to America (Santo Domingo and New York – my favourite city).

Read Claudia’s story in its original Italian here.

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