From Italy: I could have been a dancer of La Scala in Milan or I could have been a commander of the Navy. They were the dreams I had to give up. I was a happy child with a great desire to live; I was so lively that my parents could not keep up with me! I lived a happy childhood and for that reason I feel very lucky. I was in fifth grade when my life changed dramatically. I had just come back home from school, no time to take off my jacket and put the backpack on the ground, that my mom took me to the living room and sat me down. Her eyes darkened, she was so serious: she had to tell me something important. I never imagined what I am about to tell. She told me with great sorrow that my father was hospitalized for colon cancer and had no idea when he would be home. From that moment on, my life changed. I lived every day with the fear of losing him and never see him again.
I was depressed. Yes, even at ten years you may suffer from depression. One day I lay down on his bed, I took a pair of his sweatpants and I hugged them close to me, as you do with a teddy bear. There still was his smell, but I was afraid to forget it. I cried and I fell asleep. When I woke up, I realized that was not a bad dream, he was not there.
I was not allowed to see him at the hospital, so I dedicated some drawings, to let him know that I was missing so much and he had to hurry out shortly that bad place. Months passed and he came back home. It was an ordeal for him: they gave him chemotherapy, radiotherapy and they put two ostomy. All things that a child should not know. I reluctantly began middle school, I was still traumatized.
At twelve, I started to feel bad too. I was bleeding when I went to the bathroom and seeing that my father began to have the same symptoms, I immediately did investigations. They found an anal fissure, most likely due to stress and lack of vitamins, because I used to eat few fruits and vegetables. I finished secondary school healthy enough. As I started high school, another nightmare began. I always had a tummy ache and I suffered from anxiety.
My school made me feel like that, I did not even know why, but I was afraid of that place, professors, classmates, I was afraid of everything. I started to be absent; even if I felt that, my discomfort was not only psychological. They vetoed for too many absences.
The following year I grew worse. I kept on having diarrhoea and losing weight. I could barely eat; I felt a strong pain in the stomach every time I ate something.
On December 1st, 2006 I took courage and I went to the emergency room with my mom. I was afraid that my problem was psychological, that I was wrong. I was afraid not to be normal and thus give a great disappointment to my parents, but I felt that my body was suffering from something in me still unknown. They thought I was anorexic because I refused the food, they thought I had some food intolerance, but eventually ruled out everything, including appendicitis, until I did the colonoscopy, and I was diagnosed with Crohn’s disease. I was told that if I waited a few more weeks I would be dead. I had no heartbeat and lost more than ten kilos. I had so many wounds that every time I went in the bathroom I screamed and cried because of pain.
Every morning I did blood tests and when I was weighted, I could not stand for more than two minutes how weak I was. My intestine was about to pierce and they told me that I could not eat. I had to feed myself artificially in order to live. I had to feed myself with a lifesaving that had the colour and taste of milk. It helped me to gain weight. They filled me with drugs and after a month, I went back to school. I was promoted, but then I began with hospital admissions and I decided to withdraw from school.
I lost count of how many times I went to the hospital and how many problems and complications I had due to this disease. Because of an immunosuppressive medicine, I became ill with pneumonia.
In addition, I was affected by haemorrhagic bullous otitis that compromised the right ear hearing. I decided to investigate and doctors found me a rare syndrome of hearing. I was always in the hospital, but when I got better, I tried to work as a shop assistant. After a few months, I began to feel bad, I had shingle and I often missed the work because of diarrhoea. They fired me. I remember I went home in tears, I could not stop crying, I saw everything blurred and black, I wanted to die. As always, I got up and I found my inspiration in working as a model and musician. The 2015 was the worst year, the year where I suffered the most physical level, the year I felt a prisoner of my sick body.
In March I began to suffer from a fever forever, I felt there was something wrong with me; it was something different from the usual: I had never suffered from fever for Crohn’s disease. I had a deja vu. I decided to go to the emergency room, as in 2006, but that time in a different hospital, where I am still attended. I was hospitalized for almost a month. Doctors decided to do a surgery, but I had to wait my turn. I still remember that night in which the unexpected happened: I felt a terrible pain never felt before, it was like if it would burst my abdomen, no position was comfortable, I thought I was dying!
The doctor came and soothed my pain with drugs, through a drip. The next morning I got up to go to the bathroom. My face became white and I was so scared. I began to have a very strong nausea and I was going to vomit. I took a deep breath and I went back in the room. My fever was high and I was cold even though it was June. They took me to the operating room and I had surgery.
I woke up after about three hours, with my stomach split open and an ostomy. I was full of tubes: I had a nasogastric tube for the nausea, the bladder catheter, the rectal catheter and two drainage tubes in my right side connected with the intestine. The postoperative period was awful and painful. I had not eaten for four long days. I could barely stand and I felt that my heart was about to give in. I was filled with drugs and my arms had no longer free spaces for IV, they were black because of so many bruises. I could only sleep in a supine position and the points on my belly were pulling too much to change position. When they removed the nasogastric tube, I began to vomit bile. It was terrible!
I had an overdose of morphine, so I decided to stop taking it, because I hated throwing up. The days went by so slowly and finally I went home victorious! Unfortunately, after three days, they called the ambulance. I had a bad infection to the wound: another ten days of hospitalization. They gave me three kinds of antibiotics. I was sick and nervous. I endured all these treatments, I was counting the hours to go home and finally I came back! I would have so much to tell, but I am stopping here.
At first, I saw the ostomy as a problem, I did not accept my body and I used to hate myself. Now I learnt to see it as a salvation, a protection, a little guardian angel. When I look in the mirror I smile, life is so precious, even if is full of thorns.
Hope Through All Of It!
I do not know how my future will be, but I wanted to leave this message to all, especially to those who wear or have to wear an ostomy: “Do not be ashamed of what you are, do not be ashamed of the ostomy, it is your friend! We are beautiful even if we wear the bag! The real beauty lies in what we are, in our heart, in what we have lived, in the power we have to get through the day, in the determination we put to achieve our dreams. We are humans, who suffer, cry, laugh, rejoice every emotion. We were chosen because we look like warriors, who get up every fall and proud of the scars of this endless battle. Never give up! We will return victorious one day!” Micol
Photos and reporting by Chiara De Marchi for A Beautiful Body Project. You can book a shoot in Italy at www.ricordidifiabe.com