Do you know that story that the path is more important than the arrival? Yeah, that's what I'm talking about. I, the youngest child of five siblings, never really understood all those diseases that surrounded me since my childhood. I need to write slowly because there are so many. I'll start with my older sister Adriana: cerebral palsy diagnosed at birth. People, many people connected to care, circulating around the house. I have vivid memories of observing countless therapies, some in bed, some in the wheelchair, and some in the pool. I, at the top of my 6 years old, was exhausted just looking at it. But my mother's smile of satisfaction, in the face of it all, somehow made me think it was good, and I, rocked in this energy of happiness, accepted that my sister had a disease and that she would never ride a bike with me, but still that way we could be happy together.
My mother, Maria, was one of those strong and fearless women and made a point of bringing all the children together to all the family's social programs. Leaving Adriana behind was a non-negotiable thing. Once in a park, here in Rio de Janeiro, this should have been 1984; I was seven years old. I remember gathering people around my sister's wheelchair, and people would look at her with disapproving eyes and whisper. I felt anger, a childish anger that made my stomach ache. When this happened, I would stop in front of the wheelchair on purpose, just to block the view of those haters who "attacked" my sister, who just wanted to have a leisurely day at the park. Everyone has this right, right? I felt a lot of pity and compassion for her, and I wanted to cry, but the desire to do justice was stronger, so this strength took shape over the years, as well as a moral obligation of myself, who was healthy, and because of that, stronger. My mother used to say: "We are not going to hide Adriana indoors because we love her. The world will change based on our example. "
Now let me introduce you to Vanda, my foster sister. Vanda has always been pretty and healthy, and I know I said at the beginning of this blog that I would treat diseases here, right? Well, Vanda's health contrasted with a sick society, still very racist, especially at that time. Questions like: "And the maid, you bring to the restaurant? "Why do you bring the nanny? Guys, why are black people always associated with subordinate positions? Why can't they have a nice family? Why society reacts so badly when a black person has a good life? I'm not asking you that here; it's her, The Little Isabela, who is asking. I have to tell you, Vanda suffered a lot of racism, but she was always happy. My mother caught my attention whenever I joined the adult conversation and tried to defend Vanda. "Bebela, the world may not always be nice, but we need to do our part here within our family, and in that way, these people will learn from us. Let's be the example."
Later, at a young age and on my way to college, I watched all the sick people in the family come to our city for medical treatments and stayed at our house. My godmother with bipolar disorder, my grandfather with dementia and Alzheimer's disease, children of friends with drug addiction problems, and later my own mother with the most severe depression I've ever seen. We had very, very difficult days, but we never stopped believing. We were not rich and had very low medical resources, but we had love and that strong feeling of making it all work.
As I type these words, I access some distant and deep memories, and it all makes sense. I remember always being called a fool, at school, because I was a friend of the child with physical disabilities, at college because I entered the favelas doing inclusion projects with poor and black children." Isabela, where do you think you're going to go by doing this?" Well, that was always my reality, so navigating another territory would be different for me, at least. Each one has its normal, and mine was this one. It's still this one. Not accepting injustices and playing your part in the community are natural actions, just like air, for us, children of Maria. Everything makes sense today. Thank you, Mum.
So, today, June 9th, on what matters to you? Day, the Little Isabela invites you to reflect on what really matters, not only for you but also for the most vulnerable people that certainly exist in your life, even if you haven't noticed yet. Take the first step, be the facilitator. Ask what matters, listen to what matters, do what matters.
Let's transform the world in a wave of compassion and justice in health.
We are all one. Our family will lead by example. Get started today. Love.
Be brave—much love.