My favorite moment in the mornings was when I was trying to fix my messy hair or was cooking breakfast and suddenly the voice would come out of the bedroom: “Olesya, where are my glasses?”
That meant Alessandro woke up and a new day together started. “They’re on the night table, as usual”, - I would say and smile to myself. This word “usual” brought so much happiness to my soul. Even though it being such a short word itself, it consisted of so many words. Because this “usual” meant we are together, we’re a couple, we share things, we share lives, we have something just for us, we have our own habits and routine. The “usual” made me realize how close we had become.
I always had in mind that any day is short and we must make our best out of it. Shops, museums, walks in the park, Zoo, etc. – all must be done while the sun is shining, so that we both could enjoy it. But first breakfast, of course. This was also a good moment of each day together, because cooking for Alessandro was a great deal and a great reward, as he would always eat it all up and ask for some more. I felt very useful and necessary even in such an ordinary thing as cooking.
Next came the choice of clothes. It was so dear to me that he let me choose for him, partly because he could not always see where something in the wardrobe was, partly because he liked my taste. I would choose a costume to fit my dress or jeans and shirt to make him look a bit younger and more carefree. I would help him to choose the accessories and shoes, and we’d discuss the whole thing together. It was kind of a ritual and I loved it. If there was a small spot on the shirt, or it was not ironed enough, I would make Alessandro take it off. He’d say: “I don’t see it, let’s just go. You don’t have to choose and iron a new one.” But I always thought: “If you don’t see something, it doesn’t mean it doesn’t exist. And how could I let him out like that if I know how much he cares about his appearance?!” I thought though that Alessandro was bothered a bit with me being such a neat person, paying too much attention to details. But he didn’t. Later Alessandro’s mom told me he once said: “You know, mom, she’ll never let me look like crap, even if I don’t see it myself”. This was a pleasant discovery for me.
I knew the thoughts about Retinitis Pigmentosa started for Alessandro the moment he woke up every day. They bit him and were creeping inside his head the whole day. But I was trying hard to get them out for a moment at least. The dark elevator, dimmed light in the hall of the building, in a caf; or a restaurant, clouds suddenly appearing in the sky – all this was another hit, but also another reason for me to grab Alessandro’s hand tighter. I wish I could say: “Don’t be afraid, I will always be here with you”. But I knew I mustn’t. Helping shouldn’t be seen all the time. Because independence and learning how to get it is much more important for happiness and self-content, for Alessandro to feel himself a real man. So, I was silent. Once after a night we spent outdoors with his dad, it was already morning when I took Alessandro by the hand, he said: “It’s ok, it’s daytime. I can see normally, you don’t have to guide me”. I stopped for a moment and answered: “I know, dear. I just wanted to touch your hand.” He was surprised and a bit embarrassed. This small incident doesn’t go out of my head even now after 1,5 years. This is how much he wanted independence. And from that moment I was trying my best not to be in the way of it, no matter how much I worried about him and wanted to do everything for him and instead of him.
Retinitis Pigmentosa became a part of my life a couple of weeks after I met Alessandro. I guess I hadn’t googled so much before. When the necessary information was gathered, I made a list in my head, what it all meant for me and for our relationships (serious ones starting from the beginning). There were several vital points: 1. Alessandro may become blind any time. 2. The disease is incurable at least in the nearest future. 3. Going far with him will make me change my life completely. I was thinking hard and for quite a time if I am strong enough for taking these things on my shoulders and if my love is strong enough to endure this. The answer came by itself, when a friend of mine asked me exactly these questions during one of our meetings. I caught myself getting angry, furious, pissed off that she dared to ask if I loved this man that much to take responsibility of him and our relationships in the dark times of the future. I raised my voice and began to defend my love and strength. That is when I answered myself. That was when I made a choice.
Now, probably, you expect the story to go into details of how hard it was to get along with Alessandro, to cope with the problems born by RP, etc. I will disappoint you. It wasn’t hard at all. It was a pleasure and the happiness for me to deal with dark places, changes of mood, frustration and falling incidents. I loved and cherished every part of the man of my life. And RP…I loved it also. Because I knew at the time that if not for the disease, Alessandro would probably be another person. Good or bad, it’s not the point. But he would be not the one I fell in love with so desperately.
Retinitis Pigmentosa are two words that now have a meaning of a whole world to me. I gathered information for Alessandro about therapies, people with RP, websites, blindness, canes, aids, etc. I made some friends online and they were the best help for me in understanding what it is like to have RP and live with that every day. The award was Alessandro’s smile, his good mood, his planning for the future. The days we spent together, even though they were filled with RP, were the happiest ones.
We would spend the whole day in the sun, bathing or just lazily watching the pedestrians. It was not necessary to talk, to explain many things, but we could also discuss the life and the future endlessly. When the sun started to fall, we would be back home, doing the things which are too usual and at the same time too dear to speak about them: just being together. I had a technique to make a head massage to relax the tiny face and head muscles, which brought some blood to the eyes’ area as well. At those times we could both forget about RP and vision tests, darkness and problems, obstacles and reality. The glasses would lie on the night table till morning, when they are needed again. The night wouldn’t bother us, because at that time we were both with our eyes closed, dreaming.
Dedicated to Alessandro Morgante, who died way too soon 18.08.2009