This book is an act of remembrance

Even when everything seems to fall apart, it’s up to me to decide whether to laugh or to cry, to leave or to stay, to fight or to give up, because I realized, on the uncertain road of life, the most important thing is to decide.

“I have found encouragement in these words from Brazilian poet Cora Coralina during the past years, when I had to make decisions without knowing what my fate would be. To this day, Cora Coralina’s words continue to guide me and I will carry them with me all my life.”

A Brazilian native, Evelyne is living in Berlin with her German husband when, at age 31, she discovers that she is affected by leprosy. Shock, fear and despair ensue while the disease starts viciously attacking her body.

In addition to the upsetting news, Evelyne has to contend with the disbelief of doctors, the fears of social services, and the strong resistance of a German administration reluctant to deal with a disease supposed to have disappeared long ago.

There is also the way her relatives and neighbors see her and how she sees herself… How to deal with this deforming body? Why her? And above all, what to do with this life that will never be the same again? Despite the nagging questions, Evelyne completes her training while receiving treatment and most importantly, she starts writing, sharing her daily experience candidly. The book – released two years ago in German – has now been published in English.

“Writing this book has helped become more confident and overcome my pain. It has been very important to share my experiences with others, the good ones as well as the tough ones. I have felt less alone.”

Evelyne knew that publishing the book meant that she was going to become a public figure subject to discrimination and rejection. “It wasn’t an easy decision. But as I kept writing, I realized that I wasn’t writing about me but about the tens of thousands of people affected by this disease throughout the world. I felt that I was doing my part [to help raise awareness]. There are many pictures and interviews of me on the Internet but it doesn’t scare me.”

Evelyne is cured but she will have to live with the after-effects of the disease. “I constantly have to be careful to avoid injuries to the parts [of my body] that have lost sensation. I also have to take great care of my skin, my eyes and my muscles.” By reading the book, my relatives have discovered what I had to endure – they didn’t realize it before, even though they knew I was affected. It is very difficult to understand from the outside the effects of leprosy and its treatment on a body.”

“This book is an act of remembrance, a diary of the past and the present. It is essential that this disease be known better and the people affected be able to receive physical, psychological and social rehabilitation.”