Pensieri e parole (thoughts and words)
Don’t worry, after “Emozioni” I’m through praising Lucio Battisti. I only borrowed the title of his song because it expressed perfectly what I wanted to write about today: my feelings towards the disease.
Describing the changes taking place outwardly in my body hasn’t been easy.
I stood naked before you, which is a great accomplishment for somebody as shy asme. An accomplishment for the smoothness of thoughts coming forth, becoming fully developed concepts. A feat for the desire I felt of sharing them with somebody other than my angel Aiste, who suffers daily the weight of my disease. An accomplishment for the somehow inherent desire to vanquish the bitch.
My new goal is much harder: describing my thoughts. Physical changes are apparent. I just needed to make a description, which would have been more specific if I had wanted to hurt or shock you more; please believe me when I say I took it reeeeeally easy.
You know it: to think, for me, means to suffer for a very simple reason: it means reflecting upon ALS. Other options = zip. A few days ago someone suggested me a different approach. Instead of a passive acceptance of the situation, I should try to meditate about it, to go deeper so as to take advantage of it in the best possible way. I’m trying to do it, and if for time being the results are not very satisfying, I’m sure I’ll get better by practising.
I often think about people’s attitude towards me in sickness. I ask myself if, being healthy, I’d be able to express my feelings as much, what topics I’d be talking about, whether or not I’d be this “popular” (sorry for this stupid term). The answer is up to you.
You may not now it, but days go by very fast for me as well. Between sleep (not very much of it, to tell you the truth, just four/five hours starting at 7 AM), different medications, physical therapy, some time spent on the wheelchair (with all pre- and post- procedures), time left to think is short.
The night is for me the moment to deal with myself. I spend much of it writing, chatting with Italian sleepless friends or people across the ocean. Talking with healthy people, inside and outside, wipes out the certainty of being different, handicapped, disabled. But at heart the situation doesn’t change. We’re sick and we’ll stay sick.
I’ve started being drawn to faith, although in a very personal and private way. I pray alone at night, after having discovered the pleasure of a dear friend, once a nonbeliever like me, in going to church on Sundays.
I keep near my bed some rosary beads, given to me by another friend: they were his only comfort in jail, and once he came out he felt like bringing them to me. Thanks, F. and thanks M. for an unforgettable surprise.
Thanks to those praying for me while on pilgrimages, and to the people who pray for me every day.
Aiste says, only half-jokingly, that you know about my life more than she does.
After tonight, I can’t deny it…