One of my most vivid memories as a child are the hands of an elderly doctor who reassures me before a blood test. I was 10 and I was in a hospital room with my dad waiting for the hearty breakfast which he promised to me while he hold my hand walking me there. It was not the first, but I remember that day well: it was spring and there was a beautiful sun in Cagliari, my hometown.
I had a thyroid issue since birth and unfortunately I was about to begin a long journey that would lead me to consider the doctors almost the same way as friends , eassuring figures . So much time has passed since then and now I am writing from a green city South West English.
I was 18 when a doctor told me that my hypothyroidism had gotten worse, 22 when I was operated for a total thyroidectomy due to a follicular cancer followed by radiotherapy. Depending on a daily pill did not weigh me: I was a rebellious young woman, with a passion for writing that made my hands shake clutching a pen, a love for science and nature. I did not feel “unfortunate” and yet at times people around me called me that way. I studied so much in the hope of leaving my country, I was always looking for complications to be solved by choosing the most difficult roads in the research of the Neverland island.
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 lot of anger. And also 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). The latter I was sympathetic from the beginning, I do not know why, maybe the blue color of the syringe plunger. During these last few years I have had a few new small lesions and relapses. I spent a few days of absolute tranquility, 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.