About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Sunday, June 3, 2012

When in Rome

Yesterday we took a taxi to the beautiful Trevi Fountain, that draws tourists from all over the world, and throwing a coin into the water, I made my wish. Many of the streets are crowded, narrow cobbled - most unsuitable for a wheelchair. Last night from our hotel room we could hear the bells peeling from the Basilica. The unfamiliar sound enchantingly pierced the night, resonating throughout the streets. As we sat at a little cafe in the evening near our hotel, (and I hope my doctor isn't reading this!) I had a Cappuccino gelati for dinner! I said I would have ice-cream for a friend - and I kept my word, in fact I kept it so well, I had another one today for good measure! And if you are wondering - yes it was delicious! As we sat there, a man playing the accordion added to the atmosphere, and holding my husband's hand, it was a feeling of pure joy. There are moments in life when simple pleasures or a fleeting moment is so intense and unforgettable, that you wish it would last forever. Although we had checked the hotel had a lift, it did not occur to us to ask if the lift would be large enough to accommodate a wheelchair. Who would have thought that a lift would so small, that my wheelchair had to be folded to fit inside. I have never seen a smaller lift in my life before! Insomnia like an unwelcome stowaway has followed me to Rome, and here I sit in the early morning hours when probably even the hotel kitchen staff haven't started their day. So I guess no matter where you 'roam', Parkinson's symptoms tag along too! I thought I would be tired and able to sleep, but no such luck. I have to tell you about the bathroom - for it is decorated so ornately, with gold swirling moulding, black and white marble tiles; giving one the feeling of being in a Roman palace. Standing in this grand opulent decor in my simple cotton pyjamas   brushing my teeth, I almost feel under-dressed! Despite all these wonderful distractions, I am here for a purpose, to represent Gaucher patients and to give my oral presentation on "Writing and Therapy". Being invited to this Congress feels like the culmination of my efforts over the past year; writing my book of poems, blogging each day, writing back personally to each and every one who has contacted me, public speaking bringing greater awareness to both Gaucher and Parkinson's, and taking part in a new programme to familiarise student doctors with chronic patients. Tomorrow is the big day, so today I will rest and we'll take things very easy.

1 comment:

  1. Today's blog touched me deeply. What I love most is the way you enjoy the simple pleasures in life and it is such an important message.
    I am sure that you will reach the hearts of every single person who is fortunate enough to meet you and hear your talk.

    Jill Sadowsky