You are currently viewing “I’m on a lonely island, surrounded by a turbulent sea” – Marya, Brazil

“I’m on a lonely island, surrounded by a turbulent sea” – Marya, Brazil

I went to bed feeling fine and woke up with the flu – high fever, runny nose, nasal congestion, body aches, sneezing, inflamed throat…. Two months later, I woke up as if the flu had never existed. From then on, my life ended.

I am severely affected, but neither relatives, nor friends, nor neighbours can understand that I’m truly sick. Even after explaining for 22 years, showing videos, testimonies from other patients, they treat me as if I were a lying impostor. Some say: if you try hard, you’ll be able to do what you think you can’t. What’s with the wheelchair? Are you seeking attention? 

The list of phrases like these is endless. So, being around people every day becomes painful, sad, and suffocating. I’m a lonely island surrounded only by a turbulent sea.

If I hadn’t gotten sick, I would have eaten more, travelled more, made more discoveries, read more books.

I’m proud of not having lost my joy, nor my passion for life. Life is beautiful, it’s an art of infinite learning.

If they found a cure for ME, I would get rid of the flat sandals that I hate, and once again, I would live fully in high heels every day. My father says that if I get better, I’ll set the world on fire again.

I’m not sure if I can have my life back, but I know I can build new dreams within my limitations. A writer once said, ‘Do your best in the condition you have, until you have better conditions to do even better.’ 

As a #GlobalVoiceForME, I say to the world’s health authorities: the patients of Myalgic Encephalomyelitis are real people, with real suffering, who struggle to improve and live well despite the illness. We are not confined to our homes because we’ve given up on life or are afraid of exercise. I am passionate about life and yearn to live it fully. I am confined to my home because I have no choice and I don’t know how to help my body recover, but I strive everyday to have a meaningful life. Please help me find answers and to live again.

#GlobalVoiceForME Marya Ferreira

To answer the questions took Marya an hour and a half but it took her longer to understand. She had to read, reread, and even ask someone to explain it. When she makes mental or physical efforts, it takes her a day to recover.