It's hard to live with my health condition, but I live with it. Dialysis forces you to face bitter truths. I hear absurd things, even from people who should understand me and my situation. People trivialize real difficulties all the time. A friend recently asked why I hadn't arranged to attend a retreat at Camaldoli—where my parents were going too. How is it still not clear to her? "Why don't you just schedule your dialysis nearby?" But I say to her: do you really think I can just move a dialysis appointment around whenever I feel like it? Besides, two days is a lot of time away when I'm doing dialysis three times a week. And then she says, "If you don't organize yourself, you don't care." You can imagine how angry that makes me. Especially coming from someone who calls herself my friend.
I'm convinced that when you're healthy, you can't understand what it means to be sick; it's a bitter conclusion, but I think it's true. Beyond the three days I spend on dialysis, I go to the office twice a week, and even there my health gets brushed aside. Someone once suggested I appear on some television program—I won't say what kind. I wear a mask because of my health and my weak immune system, and people make fun of me for it. And don't get me started on the vaccine roll-out! Sometimes I feel like I'm suffocating. You know what? I'm actually more at ease in the hospital than I am at the office.
What happens when I'm on dialysis? Three times a week, someone from the Misericordia picks me up at 7:15 in the morning to take me to Careggi Hospital. There are two rooms there, each with six beds, for people on dialysis. First they weigh me and check how much I've eaten and drunk. The more weight you gain between sessions, the longer the treatment takes. My body can't eliminate through urine all the substances that normally build up: I have to do it through the machine. The needles used are much larger than normal syringes—one goes in a vein and one in an artery. They strap my arm to the bed to keep it still. For four and a half hours I have to wait for it to finish. Thirteen years of dialysis have practically frozen one of my shoulders.
I have to be very careful about what I drink and eat. The worst part is the weekend, when I have two whole days to get through. I can't eat soup, broth, herbal tea, fruit—especially fruit, which is full of potassium. And you know what the worst one is? Watermelon.
I was born blind and with only one kidney. The one I had got sick, and I had to start dialysis. I also have problems with hypothyroidism and epilepsy. While I'm there, a friar brings communion, and that gives me real comfort. Usually I spend the time wearing headphones, watching television. With one hand, there's not much else I can do. Since a bed next to mine just opened up, I'm hoping I'll have a new neighbor to talk to soon. There's another patient, but he doesn't say much. I get along well with the others, but it bothers me when one of them—a young man—curses. And it bothers me when one of the nurses complains that his job is "hell on earth." Do you really have to say that out loud to me? In my first months on dialysis, there was a deaf girl in the room: let me tell you, what a pair we were! The nurse ended up having to be our go-between.
I'd love to come meet you all in Rome, but it's complicated to organize. I'd also love to travel. My dream would be to go to Peru, but the flight would be just too long. I've thought about a transplant many times, but it seems like a lot to handle with all the complications I might have. But you know what I keep telling my mother, despite all my difficulties? I'm still glad I was born and that I get to live, even like this—and that things with her could have turned out worse.
