I was born with Gaucher's disease, and at the age of 44 was diagnosed with Parkinson’s. I have always loved writing poetry and stories. Particularly in recent years I have found writing to be highly therapeutic in a cathartic sense. I recently wrote an abstract entitled 'Writing as Therapy' which was submitted to the Italian National Institute of Health in Rome. Some weeks later, sitting with a dear friend at a little café one morning sipping our coffee, my mobile phone suddenly rang. It was my husband calling and he asked me, “are you sitting down?” Whenever one hears this phrase, it is usually followed by bad news. However, I couldn’t have been more wrong, for it was very good news which left me literally speechless. My husband, seeing an email that had just arrived, told me that not only had my abstract been accepted, but I had been invited to give an oral presentation in Rome. I was so overjoyed and excited that I could barely take in the news.

Being asked to speak in Rome was an honor, and not only would I be representing all Gaucher's patients but I’d also be the sole representative from Israel. It was important for me to attend since the past year has been an extraordinary series of events leading me on a journey of sorts. It was in May 2011 that I wrote a collection of poems that turned into a book called 'Parkinson’s, shaken, not stirred, established a website, began writing a daily blogand  receiving emails from sufferers and caregivers worldwide to each  and every one of whom  I personally reply. I began public speaking, bringing greater awareness of and education about Gaucher's and Parkinson’s disease, and taking part in a new program to familiarize student doctors with chronic patients. I felt as if this great opportunity to speak in Rome was the culmination of all that had transpired in the last year.

The Congress appeared tailor-made for me - 'Narrative Medicine and Rare Diseases'.  To narrate, telling a story, is one of the things I do best, and I certainly qualify for the category of rare disease as I was born with Gaucher's. Flights and hotel were quickly booked, and before we knew it my husband and I were off to Italy. Never having been to Italy before, and, strangely, Rome being one of the places on my ‘wish list’, we were thrilled at the thought of visiting the home of opera, the land where delicious Parmesan, pizza and pasta originated, and the many beautiful historical sites. Every little narrow cobbled street holds a charm of its own, breathtaking architecture combining both great art and history. Rome is a writer's heaven, for inspiration lingers at every turn. Despite all these wonderful distractions, I was there for a purpose - to tell my story and represent Gaucher's patients.

I was thrilled to be there, taking part in the First International Congress of Narrative Medicine and Rare Diseases, and on June 4^th 2012 we were warmly welcomed and ushered to our reserved seats in the front row, as, slowly, the lecture hall filled up. The participants in the Congress were mostly distinguished professors, doctors, researchers and academics in the medical field, along with a few patients like me, suffering from a rare disease. Simultaneous translation headsets were available although much of the Congress was in English. After an introduction by the chairlady, the opening lecture was given by the renowned Prof. Brian Hurwitz from England who spoke about the powers of observation used in narrative medicine.

It was my turn to speak next, and I was helped up onto the stage and formally introduced. I was given 15 minutes to speak, and an extra 5, which stretched into 10 minutes, for questions and answers. Speaking from personal experience and from my heart, I gave a fresh perspective from a patient’s point of view which caught their interest. I spoke eloquently to a room full of prominent people in the medical field about Gaucher's disease and therapeutic writing, and I have since been informed that my presentation will be published by the Italian National Institute of Health in the Congress Proceedings Report which will be in English.

There were some very interesting and pertinent questions asked, but unfortunately there was limited time, so they couldn’t get around to everyone. My presentation went very well indeed and from the applause and the reaction I could see that I had reached the audience and held their attention. The morning coffee and lunch breaks provided a great opportunity to mingle with the other guests.

There were interesting speakers throughout the day, and several poster presentations. The Congress finished in the late afternoon with a closing speech from Prof. Hurwitz. I am not in good health, so for me it was a very long, exhausting day, but I was extremely happy and satisfied that it had been a success. I was asked by the organizer if I would like to return next year, to which I said “yes”.

You never know what life holds in store, and I always say that despite suffering from two diseases there is always a silver lining in everything; you just have to be able to see it!

Read Elaine's article in the Huffington Press/TEDWeekends at this link http://www.huffingtonpost.com/elaine-benton/ive-a-list-but-no-bucket_b_3474690.html