“IF THE CURRENT MOMENT WASN’T GOOD, IT WOULDN’T BE CALLED THE PRESENT. WE SHOULD ENJOY THE PRESENT FULLY AND INTENSELY, BECAUSE WE ARE COMMITTED TO IT. THE NOW IS A REMINDER OF WHO WE ARE AND WHAT WE ARE DOING IN THIS WORLD.” DANIEL MUNDURUKU, BRAZILIAN INDIGENOUS WRITER, TEACHER, AND ACTIVIST
“Life is like a homework assignment. Before you know it, it’s already 6 p.m. Before you know it, it’s already Friday. Before you know it, it’s Christmas time. Before you know it, the year is over. Before you know it, you lose the love of your life.
Before you know it, 50 years have gone by. And by then it’s too late to fail this class. But if I had one more day, one more chance, I’d forget all about the time and always move forward. And along the way, I’d discard the useless golden peels of the hours.
I’d follow the one I love, and say ‘I love you’. Don’t stop doing what you love for lack of time. Don’t stop being with other people for fear of happiness. Because the only thing you will ever truly miss is this time, which will never, ever happen again.” MANY DAYS, MANY NIGHTS
“Longevity”, a “long” life, refers to Cronus. Life’s measured in years, but I’m much more interested in living in the moment. If society cared less about time itself and more about how you spend it, it’d be perfect. To have your happiness, your integrity, your time stolen… is unforgivable.
The best age is the one you’re in peace with. It can be 18, 50, or 75. There’s no doubt we’re giving new meaning to aging. That revolution of what time means is fairly recent. We’re much more focused on the impact of technology… GERONTOLOGIST PRESIDENT OF ILC BRAZIL
…than with the more important, revolutionary impact: People are aging quickly. The fact that 14% of Brazilians are over 60 years old, and 30 years from now, that will be 31%. Open your eyes! The most important thing of this century will be the process of aging.
Until the beginning of the last century, life expectancy was merely 40 years old, even in countries with older people. Germany’s was 46 in the 20th century. That was the apex. How can we not completely alter both our personal and collective concerns in the face of such unprecedented conditions?
How can we keep burying our heads in the sand? Does it impact health? Of course. It changes one’s perspective on life. You won’t live just until you’re 40. You will live to 80, 90, or 100 years. You must consider the role the elderly will have in society. What are the generational interconnections?
We won’t be talking about a father, his child, and a grandfather. Three to five generations will live in the same period. So it’s philosophical, anthropological, and, of course, sanitary. But it’s also an economic issue. From an economic perspective, how will society deal with the fact that we don’t allow the elderly
To keep contributing to society? What do we do when there are more elderly who are healthier, more active, with more vitality and knowledge? We’ll try things out. We’ll cause an impact. How can I grow old like my grandparents? How can it be the same? It can’t. I won’t retire and become obsolete.
I’ll still be in the forefront, I’ll know my rights, and I’ll keep pushing it, changing it up, trying things out. Don’t wait until you’re 65 to figure out how to age well. Start now. The sooner, the better. But it’s never too late. It’s a mantra.
It’s better to prepare for longevity in your 20s than in your 30s. If you don’t start then, start in your 40s, 50s, or 80s. It will only be beneficial, but the sooner, the better. What’s the lifestyle of Brazilians, and what does “longevity” mean?
It has a whole other meaning to us, the privileged ones, compared to the relative longevity of those who didn’t make it to 90 years of age? I’ll tell you the story of when my mother turned 90. We threw her a big party. She was healthy.
She danced the celebratory waltz with her private doctor. She posed beside the social capital she thought she had. Her daughter, her nieces, her granddaughters. And I thought to myself, “Oh, God. If my mom’s 90, my old nanny Vitória’s turning 80.”
As a child, I’d find it remarkable that they were born the same day, ten years apart from each other. “Where is my old nanny Vitória now?” And then I searched and searched. It was hard. And I found Vitória. She had gone back to Minas Gerais to what once was a small town
And now had turned into a city. She didn’t have social capital. She had a sister and nephews whom she hardly knew. She was lonely. She didn’t have just one chronic condition, like my mother, who was 10 years older. She had nine.
She didn’t waltz with her private doctor, because she didn’t have a doctor. And she didn’t have any children who’d take care of her, because when she could bear children, she was caring for my mother’s children. The reality is, we must take it upon ourselves to look at who’s growing old and how,
And at what longevity looks like to each person. Oh, some people… Some social groups, some cultures are just too persistent. We resist out of stubbornness to live. I know I’m a woman, I’m Black, I’m marginalized, I’m a mother, I’m an actress, I’m a person with a disability.
I’m not an activist because I want to fight… ACTRESS AND CHOREOGRAPHER …for gender equality or race equality, or against ageism, or for people with disabilities. I’m an activist because I need to survive. If I don’t fight, I won’t last. I have so many “markers” that I wouldn’t exist if I didn’t fight.
I don’t have a choice. But the ones who can choose are the ones who must make it happen. You don’t need to have a disability to realize you shouldn’t be ableist. You don’t need to be Black to fight racism and promote anti-racist actions. You don’t have to be old to be against ageism.
I’m Mona Rikumbi, and my name means “child of the Sun”. To be a child of the Sun is to have a fire within you and to light the flame of truth, justice, equal rights, equality, and quality of life. That’s what being a child of the Sun means.
I’m only saying this because I’ve made it to my 50s. Being woman with a disability in her 50s in Brazil is the same as being elderly. I still haven’t wrapped my head around it, but I know I’m an elderly woman, and I love speaking. To my people, that’s power.
I’ve always followed African traditions. We gather around our elderly to listen to stories. That is just… Growing old is something we aspire to. I want it. It’s all about loving life. PERSONAL ARCHIVE MONA RIKUMBI I was going to begin shooting the documentary today,
But I felt really sick in the middle of the night. It was awfully undignified. You sit on the toilet, throw your arms around the bathroom bin, and that’s all. That’s what went down with me, last night. Now I’m in the emergency room. This is my retreat.
Some go into retreat in the woods, but mine sometimes are in the E.R. And that’s it. That’s part of it. CARNIVAL, 2020 -Wow! -I’m ready to go. -I want it. -I wish I had eyelash glue. I’ve always been restless. I’ve always tried to understand the meaning of life, our role on Earth,
What the Divine is, who God is. And I knew one day that would burst from inside of me, and that I would begin searching. Even if I weren’t sick, I’d try to get these answers. JOURNALIST, WRITER, PATIENT, AND PALLIATIVE CARE ACTIVIST FOR AS LONG AS I BREATHE
“That day, the system of the clinic didn’t work, And the doctor had to fill it all out on a piece of paper. My name, the name of the disease, an ‘X’ here and there. A quick, almost mechanical process. As I read the form, I came across an ‘X’, followed by a word. ‘Palliative’.
How come? ‘Palliative’? In five seconds, I’d already prayed to all the saints, orixás, and mediums. ‘God, my cancer is terminal.’ And then I got sad. ‘Fuck, am I going to die at 33?’ I, Ana Michelle, or Ana Mi, as most people call me, found out I had breast cancer at 28.
At 32, when I was starting to forget about all the mastectomy, chemotherapy, radiotherapy, I found out I was sick again. I had a liver metastasis. And I realized that, from then on, the road would be long and painful. In that new way of measuring time, of counting not seconds, but moments,
I found a life full of meaning. And even in the most critical of situations, I could still see something good. This story is not about cancer. It’s about living and dancing with time.” I always go back to the song Cajuína. We keep asking that question, “We exist. What is it for?”
PHILOSOPHER PHD IN EDUCATION To me, that’s always the question. At every moment of my journey, that question is asked again and again. PERSONAL ARCHIVE SUELI CARNEIRO I say I’m from the old-school Brazilian Black movement. I’ve learned everything from Abdias do Nascimento and Lélia Gonzalez. I’m their child, and nothing else.
I always say that Abdias taught me to think Black, to think like a Black person. And Lélia taught me to think like a Black woman. And these two conceptions have determined my entire life and my destiny. All my experience comes from… being raised in a big family. A gregarious family.
I’m the eldest of seven siblings. Fortunately, we’re all still alive, growing old. Black families tend to be extensive, and that’s a survival strategy. At the moment, my eldest aunt, who’s 95, is hospitalized. Her mom had 17 children, but she’s the only one who made it to 95. None of her siblings reached 70.
I’m amazed that I’ve made it to 70, because doctors gave up at two. When I turned 70, I was recognized and celebrated, especially by young girls of the youngest generation of Black girls. Honestly, I used to think I could ever reach them.
I had no idea I had such a strong presence in their lives. And there’s something new about their generation, which is the concept of care. It isn’t a trivial concept, it’s intrinsic to a political strategy, in which Black females take care of each other so that each can grow together.
I think of time as a miracle. Time is a mystery. Each minute is full of uncertainty. My family is not long-lived. My parents passed away at 76. If I’m healthier and have more money, I can make it to 80. So I have 28 years ahead of me.
But when I reach half of that, I’ll be much more fragile. So, realistically speaking, I only have 14 years left. GERIATRICIAN AND WRITER That goes by way too fast. Sure, I can try learning how to play Moonlight Sonata, but for that I’d have to apply myself.
And if I do that, I can’t be a doctor 24/7. I am the eldest of three sisters. PERSONAL ARCHIVE ANA CLAUDIA From the moment I was born, my grandmother was already living with us. She had a vascular disease, which clogs the arteries. She’d be in a great deal of pain.
One of my first memories is from when I was around five… I saw my grandmother screaming and crying in despair. So I grew up in an environment filled with illness. Sometimes my dad would ask the doctor to go see her at home. The doctor would enter her room,
And though Mom wouldn’t let us in, I’d peek through the crack. The doctor would sit on my grandmother’s bed, and then he’d take her hands. And his big hands would cover hers. He’d pay attention to her as she’d tell him about her symptoms.
Then, after he’d leave, it would feel as if a major load was gone. Our home would shine. Everything would light up. And one time he asked me, “What will you be when you grow up?” And I said, “A doctor.” I used to play with my dolls in my grandmother’s room.
When she had to amputate her second leg, I cut my dolls’ legs off too. But she was still in pain, something we call “phantom limb pain”. She’d say she wanted to die, and I’d tell her I’d be a doctor to take care of her. “I’ll take your pain away.”
So I went to medical school to treat her pain. I wanted to acquire that knowledge. On my graduation day, right when I was getting my diploma, she was drawing her last breath. During training, I had my first contact with patients. And the first patient I ever met… Recollecting that moment is hard,
Because I felt totally powerless and overwhelmed. I’d entered that patient’s room to treat their pain, but their state was terminal, so it was out of my hands. I thought, “What good is a doctor then?” “I’ll find out what I can do. I won’t quit studying until I get answers,
Because I want to learn how to help, I refuse to just abandon them.” I finished the residency, and I started specializing in palliative patient care. It was wonderful, because then I wouldn’t have to sacrifice my empathy to be a good doctor. My empathy helps me give protection to those in pain.
If I can’t stop their pain, I can at least make give them strength to endure it. “You are not alone, I’m here. I’ll help you through this. I can’t go through it for you, but I can go through it alongside you.” To care for others is to care for what’s sacred to them.
It all started when I was a kid, because I was interested in funerals. I didn’t like the vibe, but it was fascinating to see how people welcomed the mourners. The socialization of that moment was important to me. I’m from the countryside, so… We’d make sure it was a long funeral… COMPASSIVA COMMUNITY LEADER
…because at night we’d have food and alcoholic beverages. All that was a social gathering. PERSONAL ARCHIVE ALEXANDRE SILVA There was a science fair at school, and my group was assigned as the hospital. Each student got an occupation, and I got nursing. The occupation that had more to do with care was nursing.
A nurse at the fair told me, “Nursing is the art of caring for others.” That was it. I decided I’d become a nurse. I got an MBA in Rio, and that triggered a research question, “What’s it like to have a serious condition in the favela?” I knew what it was like outside.
But what was it like in an environment that was often overlooked by the government? My master’s research wasn’t about favelas, but my doctorate’s was. I wanted to research that. And some people from Rocinha reached out to ask me to see patients there. It was too much, and I couldn’t keep doing it alone.
So I started looking for the primary caretakers there, and I found that they were all women, elderly women, who devoted their time to caring, despite working a lifetime in other fields. But they never quit caring for others. Today we’re already 31 volunteers, and 29 of them are female volunteers.
And 60% of them are women over 60. It’s a known fact that by 2050, the population pyramid will have been inverted. The elderly will surpass the young. What public policies are being created to care for these people that are now able to live longer?
Should they just live longer or have quality of life? Are we seeking to add life to their days or to just add more days to their lives? If you look at the studies showing where people live longer, are happier, and have quality of life, you always observe extremely cohesive communities,
Where people are in contact with each other all the time. People have constant, permanent exchanges. It’s about the quality of life that arises from that social capital, the relationships and interactions. PLACES WITH BETTER QUALITY OF LIFE AND LIFE EXPECTANCY COUNTRIES WITH HIGHER LIFE EXPECTANCY COUNTRIES WITH LOWER LIFE EXPECTANCY LIFE EXPECTANCY IN BRAZIL
Our society is unable to pay attention to its own time. We don’t respect aging and what it means in terms of abilities. Ability to survive, ability to receive wisdom from the experience of the elderly. We live in a hedonistic country, where being young is the norm.
Today I don’t look like I did at 25, and I don’t want to. Wanting to make that youth last is the quickest path to frustration. PERSONAL ARCHIVE ALEXANDRE KALACHE It’s impossible. The years gone by will leave a mark on you. As an old man, I’m more than I was, I’m more of myself.
I have to be consistent with this. That’s an important reframing, because, before, you had to grow old according to certain standards. And those standards would often frustrate people, and those who fall prey to these stereotypes today are unhappier. The consumer society makes us believe that old things don’t work.
Old things don’t perform so well. Old things aren’t necessary for a happy, full life. What you need to lead a happy life are functional things, things that optimize your ability to consume more. But what’s being consumed is our time. Out of all the wicked appropriations made by neoliberal capitalism,
Stealing our time may be the most harmful, because it robs us of life. We aren’t looking at the indicators of quality or happiness, We aren’t thinking more holistically about science and its purposes. How are we taking care of ourselves and of our planet? All of that is being threatened.
They say the first person to live to 150 has already been born. I think we need to be a bit more coherent. What kind of world will they inherit from us? Where will they live? Who will get to live? Everything has become goods. The neglect of childhood, of the youth, of the elderly.
It’s all about getting rich or die trying. “Time is money.” That’s how that triumphant ideology has been unfolding. And the utopia it has defeated is egalitarianism and communitarianism. So we have to rebuild… If we want to survive as a species, we must rebuild these ideologies. Earth can’t take it anymore.
The predation caused by capitalism. Every person who starts today is an ecologist. If they don’t realize they have to take care of the planet to continue existing and to keep what has been planted alive, there’s not even a reason to be born. Caring about others, about the whole.
Only that can change things, people. In fact, everyone leaves a legacy. It’s the impact you have on the world. It’s the mark you leave in the world. Some people leave deeper marks, be them positive or negative. If I inspire and impact my community, that’s already part of my legacy. inFINITO MOVEMENT FOUNDER
And that doesn’t die. It lives on. The Rocinha favela is my world. I love it here. We live because we do. Because we enjoy living, and we like what we do. We help those in need, son, because life’s hard, everyone has to work.
If mothers can’t leave their kids with someone, how will they live? They need the daycare so they can live, work, and raise their children as well. I love this place. If you take it away from me, I’ll die. As long as I can work with them, I’ll keep doing it.
FOUNDER OF DOIS IRMÃOS DAYCARE We need a way to exist that goes beyond how old we are. The reality around the corner will have more elderly than youths. So this idea that, if you get old, you become useless will make life on the planet unfeasible, because there will be no one to work.
Retirement, the end of life, is not about resting until death. You need to keep on living and doing what you want to do, all occupations that make sense to you and that can favor your health. There’s no point in saying we’re unproductive, or that we’re powerless.
Maybe we just need to keep adapting to reality. I like being with young people because I want to learn from them. What they do. Maybe it’ll take me more time to learn it. I hope they are as generous to me as I am to them when I share my knowledge,
And may them lend me time to grasp. The people of my generation, both male and female… BALLERINA AND BALLET TEACHER …and even those older than me, have cognitive, emotional, intellectual, political, and social ability to keep being active. There’s the cruel aspect of people being pushed aside because they are considered old.
We know that happens, and sometimes it happens too soon. When you’re 50, sometimes earlier, you’re considered old. A lot of people are entering the job market… MATURI PLATFORM CREATOR …in need of experience, and their labor is cheaper. At first glance, this is more favorable. But it ends up harming companies,
Because younger people lack life experience, which is so important. You see things more holistically, you handle problems more calmly. You know you’ll get through them. You’ve already been there, so you’re more flexible. Many companies might invest on diversity and inclusion of gender, race, LGBTQIA+, disabilities… But everyone’s young.
Then I tell them, “That diversity is important, but if everyone is young, everyone will think alike, they’re from the same generation. There also needs to be age diversity so that people will think differently. It’s been proven that diversity brings innovation.”
I feel okay with getting older. I don’t feel old, I just have white hair. I still play soccer, drink beer with the kids, go to barbecues. Nowadays, all my friends are young. I had friends who’d tease me. Some of my friends have passed away,
“There will be a soccer game in Heaven next Sunday, and they want you to go.” COOK I say, “No, my knee hurts. I can’t go!” Right? “I have an injury!” I’m 31, and 30 years from now, I’ll look just like him: white hair, grandchildren,
With my family, knowing my father made it to old age, and he was happy… DELIVERY DRIVER …with his upbringing, regardless of the hardships. He’s my role model, an inspiration. You see the world from your parents’ and grandparents’ perspectives. And if you don’t respect that, you’re a nobody. You’re empty.
Even to disagree, you first must understand them. “My father did it wrong, I’ll be different.” It’s a parameter. I remember a verse from a samba, but I don’t know who wrote it. “Respect those who made it to where we’ve made it.” -It’s important. -Jorge Aragão. PORTELA ELDER That’s crucial.
We follow them around to learn a bit and to keep going. We follow their example. I’m glad I’m getting older. Here at Portela, we welcome the elderly. “They’ll mess with the parade, they’ll be late, they won’t make it.” Everyone can participate, no one is left behind. Everyone moves.
It’s inevitable: We’re all going to die. And any of us can become a person with a disability. Active aging is a lifelong process, where you optimize opportunities for four key things. You optimize opportunities to be healthy, to acquire knowledge, to take part in society – because you want to demand your rights –
And when all that fails, the last pillar is security. You want to be protected if things don’t work out. And millions of Brazilians are growing old without a roof over their heads, food on the table, and enough money to get by. That’s terrible. That’s why the matter of active aging
Is linked with the matter of social equality. When you’re left out, you live far, public transportation is awful, you can’t have fun, you don’t have decent job opportunities that protect you, you become unhealthy. And a third of the population of people between 18 and 30
Neither works nor studies. How can you expect healthy aging? Someone who faces social pain, and starts dealing with a life-threatening illness. Public ambulances don’t enter alleys. They don’t go up the favelas. The social organization is local. Taking care of a social pain… These people have already learned that because they had to.
-I can’t explain it. -You were meant to do that. I enjoy taking care of people, I like helping them. It’s sad when an old person is discarded. COMPASSIVA COMMUNITY VOLUNTEER No one cares for them, nobody cares about them. In the countryside, when I was small, I didn’t have a childhood.
I was born into work, and my only mirror was water. There was a water basin in the backyard, and that’s how I’d see my face. I started to look at myself and to see myself after I was 13. I didn’t think others knew I existed. I didn’t exist.
That starts with my age. When I got my birth certificate, I was already 20, when I came to Rio. I didn’t even have a birth certificate. I don’t know if this is my real age. But I had to have a record, I had to exist.
How many days have I lived? How many nights? How can we talk about longevity in this context? The first right we’re susceptible to lose is the right to life. There is a kind of eugenics that makes young Black people disposable in the eyes of society.
The challenge Black people face isn’t the terror of old age, it’s being able to grow old, especially when it comes to Black males. The challenge is to reach adulthood. The challenge is to reach an old age. Brazilian rappers have always sung about individuals who considered themselves survivors at 27.
Because they had outlived the statistics. It’s abhorrent. AFTER A NEW SURGE OF RACIAL DISPARITY IN LONGEVITY, IT MAY TAKE BLACK BRAZILIANS 116 YEARS TO HAVE EQUAL OPPORTUNITY AS WHITE PEOPLE SOURCE: FOLHA DE SÃO PAULO, 2022 No ongoing war in the world has more casualties
Than the number of young Black men who die every year in Brazil. THE HOMICIDE RATE OF BLACK MEN IN BRAZIL IS ALMOST 4X HIGHER THAN NON-BLACKS SOURCE: SOU DA PAZ INSTITUTE, 2020 OVER 408.000 BLACK PEOPLE WERE KILLED IN BRAZIL OVER THE LAST DECADE 72% OF ALL HOMICIDES IN THE COUNTRY HAD BLACK VICTIMS
SOURCE: BRAZILIAN FORUM OF PUBLIC SECURITY I’m a mother and a grandmother. My kids are Black, my husband was Black. And I thought to myself, “I take care of people, I like what I do. I’ll do it for as long as I can.” COMPASSIVA COMMUNITY VOLUNTEER But I’ve always wondered,
“If I grow old, will someone care for me?” I don’t know. The longevity in the favela is good on one hand. If you have bonds, you’ll get to eat and someone will take care of you. But will your family be there too? Before, you’d have children and say,
“My children will take care of me.” But that’s uncertain. So you have to resort to your social capital. A friend, the one who sees you is the one who’ll take care of you. That’s what we’re cultivating, and that’s what we’ll do. We have an obligation to resist, and we are fated to resist,
We are doomed to resist, and resist we will. My organization works with women who have lost their children to police brutality and to drug trafficking. Those women have a slogan, “To us, grief is a verb.” GRIEF IS A VERB “We have no way out.” I say to young Black people
That their greatest act of rebellion and insurgency is to stay alive, because the plan is to exterminate them. “By any means necessary, oppose. By any means necessary, keep yourself alive. In honor of your ancestors, who brought you here, and in honor of your human dignity.”
Look around you. You can see a bunch of 90-year-olds. Then you say, “Oh, I live in the country with the largest Black population outside Africa. Why is there no old, Black man by my side?” Those are the questions I want you to ask. Right?
Wherever each of you lives and whatever age you are, “Why is it that, in my school, not even 50% of students are Black? I only see a few black dots here and there.” My biography shows a photo that represents that. I’m but one black dot in a public high school.
And why don’t we question such an aberration? Why do we think that’s natural? PERSONAL ARCHIVE SUELI CARNEIRO We’ve always been one of the top ten most unequal countries in the world, and we’re deepening the inequalities. What’s your role? What are our roles? What is society’s role?
What role should the current and the future governments play in order for us to be able to prevent this abyss from being so shameful? That’s the big question. Will we continue allowing Brazil to be a country that condemns the Black people, the poor, the PODs, the elderly, the women, the LGBTQIA+ people?
And when we add all those up, of course they are the majority. Is it up to us to oppose that? Is it up to you? Is it up to who’s listening to me? I think it’s up to all of us. You must ask yourself, “What’s my role,
And what should I do to make a difference in this mess?” I’m used to living alone. I don’t think you can reach 100 well on your own. You’ll need someone. I look young, like a child. I say I’m still a child. If I stop and think about old age, I’ll get old.
Growing old is like feeling pain. You must learn not to be prejudiced against me. Because one day you’ll grow old too. I don’t think about growing old. RECYCLING COLLECTOR Not that I’m afraid of it. I’m not afraid of growing old or dying. I’m only afraid of the cruelty of the world.
Human suffering is only unbearable when it’s uncared for. So is there suffering? Yes. It is intrinsic to human beings, but it can’t be normalized. Article 196 of Brazil’s Federal Constitution says health is a universal right guaranteed by the government. But they never come here. And there are sick and old people here.
People who need to be cared for by the government. But politicians can’t see the favelas. The understanding and the standards weren’t built for the favelas. It all seems like… wishful thinking, to provide palliative care in favelas. But we face many issues. We face war zones on a daily basis.
And war’s not only about shooting. Have I heard a shooting? Yes. I’ve seen a crossfire. I once took shelter in an old lady’s house until the next day. Something that’s shocking and it’s part of war are people living alone, without food,
In an advanced stage of illness, and in the final days of their lives, being eaten by mice. Once I saw eight mice on top of a patient’s pelvis, feeding on them. Also, this old lady was taking anti-sickness medication. The staff noticed she had been gone for four days.
We had to break into her house. She had passed out from taking too much medication. And I’m not exaggerating, there were around 150 cockroaches on her. They were inside her mouth and her nose. Another war situation: An old man living alone, with head and neck cancer.
Nobody took care of him. Nobody from the government. One day we went to see him and there were flies everywhere. He had put a wiper on his neck, and there was blood all over his house. When we took off the wiper, in a single afternoon, we removed what ended up being 120 worms,
From his neck and ears. That’s a war scene. That’s neglect. And his place was just a few minutes away from the most expensive neighborhood in Brazil. Do you see now why it feels like war? It’s completely absurd. Such inequality. I couldn’t stand seeing wounds or sick people.
Now, I don’t mind. I can tend to wounds. COMPASSIVA COMMUNITY VOLUNTEER If I have to, I will bathe someone in need. Because I want to help people. To do it, you have to prepare yourself and your soul. You have to accept it. And sometimes it’s hard. Sometimes their family are desperate.
So we have to pay attention, listen, talk to them. We must be ready. We become their therapist, sometimes. I really missed you. The pandemic separated us. -We couldn’t see each other. -True. I missed seeing you at mass. You’d come to the six o’clock mass. That’s right.
We’ll do that, because it’s second nature to us. We’ve always cared for others. And we’ll keep caring for others until we die. The driving force behind care, and especially palliative care, is compassion. It’s the act of feeling compassionate and helping others. Our community is compassionate, but what I dream of
Is that humanity as a whole becomes compassionate. Even if there isn’t a project, we want to plant the seed, and we want to see it sprout in the hearts of young people, adults, of those who ignore us, of those who applaud us, of those who call us fools.
I’m glad we can make fools of ourselves. That means we have dignity to do this. But what we strive for is a compassionate humanity. PERSONAL ARCHIVE ANA MICHELLE I’ve become an activist for palliative care because I really love the fact that they’re people who take care of other people
In their most vulnerable state, where they have nothing to give back. The first oncologist I saw, was back in my first diagnosis, in 2011. When I walked into her room, she was looking at her computer screen. And I must’ve spent 10 minutes with her.
I’d just found out I had cancer, I’d had a mastectomy 15 days before. I had so many questions. And this person in front of me wouldn’t even look me in the eye. She said, “You must do these tests.” She filled it out and handed it over.
Then she said, “I want to see if the illness has spread.” I was shocked. I had just found out I had breast cancer. I hadn’t even considered the cancer might spread. And then I said, “Will I have chemotherapy?” She said, “Of course, look at your age.”
What did she mean by “of course”? I’d never had chemotherapy. Then she said, “And yes, before you ask, your hair will fall out.” I left the room and started sobbing, because she had reduced me to hair. She assumed my only concern would be losing my hair. I had cancer.
I’d had my breast removed. I’m feeling sick as hell. So we do this one first, it’ll help with the nausea. Ana Michelle de Sousa Soares. Mother’s name: Alvenir Sousa Soares. This is Ondansetron, okay? My palliative care journey started then. I didn’t accept a doctor who wouldn’t even look me in the eye.
We deserve a little more than that. It isn’t about tending to the disease, it’s about tending to the person. You learn anatomy, physiology, pathophysiology, pharmacology, drug interaction, symptoms, all that as if it were a 25-year-old man. Then you get frustrated and make mistakes, because the patients are more and more elderly
That are aging with multiple pathologies, with hidden illnesses, and your parameters are for the young. It’s impossible to cure, and people aren’t teaching future professionals to take care of others. Especially men. And we’ll deeply regret it. In an aging population, us, men, can’t expect
To be cared for forever without taking part in the solution. I am the oldest sister, the first of five children. I’ve always felt the need to take care of my siblings. I didn’t know what I wanted to be. Then I took the medical school entrance exam.
The third year is when we start interviewing patients. That was when I felt it made sense to me. It was around 93 when I had… PNEUMOLOGIST …my first office. My main goal wasn’t to make money. It was place where I looked at my patients and listened to them.
That’s what caring is to me. It’s what I enjoy doing. It’s what I thought I was doing for my siblings. It’s what I did for my son, even in my busy routine. I do things my way, at my own pace. My appointments don’t have an end time.
It’s like Cassino do Chacrinha, it ends when it’s over. Women, in their process of seeking emancipation from patriarchy and in their search for equality, have forged their own culture. And since women have always been linked to the tradition of care, that’s where they’ve also forged…
They’ve forged their own culture. Women know how to care for others. Even though it was in an oppressive context, we’ve specialized in care, and we take care of others. We nurture. Here’s a practical example: Female leaders of countries have handled the pandemic better than the male leaders. That’s what I’m saying.
THE DEATH OF THE ELDERLY DUE TO COVID-19 INCREASED SOCIAL AND ECONOMIC INEQUALITY The people hit the most by the pandemic were the poor, the elderly, the Indigenous groups, the Black people, and the ill. Before the pandemic, they were already viciously ignored. It was a cruel extermination, what happened to the elderly.
The majority of those who died in the pandemic were elderly. And that was not something that happened out of the blue. Ageism didn’t emerge in the pandemic. The pandemic just brought it to the forefront. We’re facing a sudden manifestation of ageism. There’s always a group that thinks they’re better than others.
It’s the “ism”. Hence, “ageism”. In this case, young people think they’re better than the elderly. Once you have the ideology, you institutionalize it, you put it into practice, you impose rules, you take measures. “You won’t enter my hospital. You won’t get an MRI.
You’re too old. You can’t stay in the hospital over seven days.” It’s the perverse side of people that institutionalizes ideology. And then the ageism becomes interpersonal. Jokes are told. It’s insidious. You’re always hurting the elderly, their self-esteem, their self-confidence. And it all ends with internalization.
You end up believing you’re really worth less than the young. That’s the goal of supremacy. I started working at 17, at a repair shop, and I retired in 2010. Longevity is knowing how to live. Six years ago, I started making art. What does it bring me? Joy, happiness.
I think I’m bringing joy to others too. When I have a dance presentation… RETIRED DRIVER …or I act in a play, that makes me happy. I feel like a teenager again. So I’m an elderly teenager. And I’m afraid of dying. So it’s important to get together.
We need to talk about it and gradually find out what others think. The more you discuss life and death, the braver you become, I think. I don’t know how death will present itself to me. This is what matters: you should think about how to live and how to die.
We idealize death. I’ve done this countless times: I ask an audience to close their eyes and imagine three things: “At what age do you think you’ll die, from what, and where?” They usually answer they’ll die in their nineties. Cool, longevity. Chronological longevity. “What will you die of? Who thinks they’ll die of Alzheimer’s?
Who thinks they’ll die of Parkinson’s? Of degenerative diseases? Who’ll die of diabetes, kidney failure with an amputated foot? Who’ll die of a serious condition?” Nearly nobody. And then I ask, “Who’ll die of heart failure?” There’s a major show of hands. It’s death, idealized.
You think you’ll die like a bird, flying around and suddenly… And then I ask them, “Where do you think you will die?” “Who thinks they’ll die in a geriatric hospital?” I don’t think I’ve ever heard that. “Who thinks they’ll die in a long-term care facility?”
Three or four raise their hands. “Who thinks they’ll die at home?” So we idealize death. We think we’ll die suddenly. A sudden illness that isn’t preceded by anything, by incapacity, by the need for care. But less than 10% of deaths are “bird” deaths.
The other day I had the privilege of talking to 70 elderly people. We talked about the end of life, about their death. I was terrified. It’s different when it’s generic. I was talking to a group of people who were looking at their own death. It was a delightful conversation, they were extremely eager.
They were handling it well and they understood it’d happen. I mean, their friends were dying. They could see it happening. And they told me, “The thing is, I can’t talk about this to my loved ones. I can’t talk to my son like this, because he won’t talk about this.
I’m happy and I want to keep on living.” They weren’t depressed. They were just elderly people looking at their reality. And I hope we can change that. I want the elderly to be able to talk to their children. I want their children to be willing to understand the elderly.
And let’s live well while we’re still together. I’m talking about stuff that really matters: the love in their relationships. If I lead someone to talk with their grandfather or father, it’s already transformative. The way they mourn their elderly changes completely. -Your hands are so beautiful. -No, they’re an old lady’s hands.
Have I told you the story of the old lady? RETIRED STENOGRAPHY DIR., ALESP Her great-granddaughter took her hand and said, “Are you wearing gloves?” -Because it was… -Because it’s all wrinkled. “Are you wearing gloves, Grams?” She said, “No. Every old woman has wrinkled hands.”
The girl said, “When I get old, will my hands look like yours?” The old lady said, “Yes.” “And when I get old, will my hair be white as yours?” The old lady said, “Yes.” “Will my teeth be yellow like yours?” She was crushed. What’s so amazing about palliative care
Is when people start to feel their pain is being tended to, they smile again. It’s a paradox, because they’re palliative care patients. When they understand they’ll die, they start living in the present. They find out you don’t have to be sick or in your deathbed, suffering from a terrible disease,
In order to value life. Just be aware of your death and respect that day. Many people say they’re afraid of death, but still chase after it. “I’m afraid of dying, so I’ll enjoy my life.” And they do everything that kills them sooner. You think enjoying life is destroying yourself.
What comes after the sentence “I deserve” is a huge mistake you’re going to make. Life is more pleasant when you respect death. Death will come, and you should be truly alive when that happens. And in that day, death will be worth living.
At the beginning, I had the expectation, and it was a major one… that that would be my last medication, and that soon I’d be cured. When you find out you have cancer, that seems to be the only goal. You need to be cured.
And I can’t be cured, at least not by current medicine. Now, while I’m able to be treated, that may mean the cancer doesn’t spread. And then I’ll keep on living. I’m going through different cycles within a few months, every time I do a test, every time I see a doctor, everything might change.
Or maybe everything stays the same. Or maybe I get worse. If I do a test and the doctor says, “You’re fine”, I know I’ll have around 90 days to lead a normal life, considering my condition. So it does lead to expectation, anxiety. I don’t like to talk about expectations.
After nine years of treatment, I’m no longer relying on hypothetical realities. So I just… let things happen. I try to be okay because this is the way my life is now. If I complain, I’ll still have cancer. If I’m okay and I smile, I’ll still have cancer,
But complaining makes my life a bit harder. What am I going to complain for? Complaining makes no sense to me. If the doctor says I’m fine today, that’s what matters. That’s the truth right now. I’m fine. Everyone’s lives will end. We’re here now, but who knows?
I feel exactly like everyone else, the difference is, I have a diagnosis. And I don’t have any time to waste. There’s a saying I love, “The candle of the soul are the eyes.” The candle’s the lamp. The lamp lifts the other person’s spirits. The lamp’s the fire that sustains.
If we look into the other’s eyes, if we can see the light they shine… I know this old man who lives alone, and there was this doctor who wanted to give him a TV, a fridge. And she’d ask him, “What do you want? What do you need?”
With great difficulty, he only answered, “Presence.” Loneliness, the absence of someone’s presence, can make the needs and the wants of others invisible. When we meet people who are alone and abandoned, they often look like zombies. Sometimes they aren’t physically ill, but they’re dead. They’re useless, they don’t have access to anything,
They breathe, but they’re dead. What we seek through this care is to help these people restore their inner peace. To medicine, I’m a sick woman, because I have a neurological, demyelinating disease. It’s progressive and who knows what else. But, to me, I’m healed. Healing requires wanting to live.
I’ve never counted the days I’ve lost. I only count the ones I still have. And no disease comes with a death certificate. It’s just a diagnosis. My illness awakened my conscience. Maybe that’s why I don’t find it hard to face hell at times. All that makes me more human and frees me
From all the things that imprison people. So I… I prefer. If someone asked me, “Do you want a long life? Or do you want a short life lived with absolute intensity?” I’ll choose the latter. Here’s what I’d tell my grandkids about myself. Well, grandkids might be wishful thinking. Anyway, I’d tell them that…
I lived a time of… total reconnection with myself amidst total suffering, that I wish upon no one. I have a cool life that I wouldn’t trade for anything, I’m okay, and I’m happy about it, but I don’t wish on anyone the things I have to go through.
I know I did the best I could. That’s living your life well. When it ends, you know you’ll have lived everything. Everything. I want to be okay with the fact that I was the best person I could be. You can only see beauty in your life if you… surrender. You decide to…
Take a step because that’s your path. “I’ll pursue it.” Even if it goes wrong, you see beauty in how brave you are. You appreciate what you find along the way. When we stop dreaming, that’s when we begin to die. I think we’ll always have dreams.
Actually, I’m sure of it. I work with people in their 50s, 60s, 70s. They always want to try new things. When they see new possibilities, they get super excited about their new projects and plans. I never wanted to be somebody SAMBA MUSICIAN, SINGER, AND COMPOSER I’m just Myself
So that when I wake up I don’t wander around Aimlessly I don’t wander around Aimlessly Today’s been a wonderful day. RETIRED SALESCLERK -We went surfing, caught a few waves. -We did. RETIRED ELECTRICAL TECHNICIAN -The sea was great. -The waves weren’t great, but… -But the sea was good. -It’s always good.
-It was a bit rough, right? -Yes, it was. -In the end, it was fun. -It’s always fun. -It’s always good. -Our aim is… to have fun. The pleasure of being in the sea, in front of that marvel, which is divine creation, makes us feel… so good. -We’re thankful. -We’re happy we’re safe.
To still to climb on top of a board at our age… It’s truly wonderful. When we’re young, we think a certain way. Young people want to work, build a family. That’s how we think our life is going to go. As time goes by, all our wants keep building up.
Today I’m 74 years old. And to me, nowadays, I’m okay with myself. Being this age, I do what I’ve always wanted to do, because I’ve always liked sports. I hadn’t had the chance to practice them before. Today, I can do it. The sea shows us how small we are, in comparison to it,
But it gives us a lot of good things. What good things does it gives us? It changes the way we see things. It helps us connect with it, with God, with nature… We connect with everything through it. To have quality of life, you need purpose. You must have a mission.
You wake up, and you’ll make a difference today in someone else’s life. Knowing you want to leave a legacy, you have a mission, you have something that excites you. You know you’ll live today, and will pursue that. You’ll make mistakes, and meddle with other people’s business. I’ve always meddled with other people’s businesses.
I’m one to take action. What I’m saying seems political activism. And it is. Yes, because living is political. And being able to live longer, which is the privilege I have, gives me the responsibility to make my voice heard. If I can’t speak, who’ll speak for me?
Who can talk about my experience? That’s another gift of longevity. There will be more voices, and we’ll be much louder. I can only live well in the present if I have an ideal. I need to dream about the future to be strong to live now, and to create my utopia.
How many people want to do something for a favela, especially in such a fragile place, but didn’t have the guts to take action, and life passed them by? I’m lucky enough to want something and to be able to do it. I feel lucky.
I see myself doing this until the day I die. Seeing patients. I want to do it as an old man too. Why not? Why not? Aging, to me, is like a moment in a dance. And in a scene in a dance, we bow. Growing old is me bowing to life.
When we realize we have the gift of being able to live longer, we need to live better. We must fill this time with what we love. Let’s make the most of the present moment. I know I’ve lived intensely all of the versions of myself. I devoted myself to theater,
To dance, to religion, to love… and to life. I was never afraid of living, let alone dying. Because it’s a continuity, an endless cycle. When you die, you go back to the earth. The very earth that Nanã or Zumba donated to shape what we are, and everything blossoms and grows again.
I just want to die with much more dignity than my ancestors. Aging is a funny concept. How long is longevity? How long is a full life? Can we measure it in chronological time? Because I live a full life. At some point during this journey, someone said to me,
“You’ll survive for a few years.” I started thinking about it, and I can say, in my survival, after my diagnosis, I went parachuting, I saw three nieces being born, I saw my brother’s wedding. I met the best people in my life after my diagnosis, and we’re close now. I’ve become an activist,
I’ve built a place that cares for patients with serious illnesses, I’ve written several guides on breast cancer for the health sector and for NGOs. I’ve published two books with one of the greatest publishers in Brazil. I teach weekly classes to doctors, to NGOs.
I’ve danced a lot. I went to cheap clubs, and it was fun. And the next day I’d go into retreat because I wanted to be coherent. I’ve even… I’ve gotten to know many religions, I went to all their sacred places.
I laughed, I cried, I fell in love, fell out of love, fell in love again, I’ve celebrated many Carnivals. So many. I’m not scared of dying, I’m scared of not having lived. If I die today, it’s all right. It made a lot of sense to have lived, for the record.
This extraordinary thing, which is existence, is a fact. A sufficiently magnificent fact. It deserves to be celebrated, in spite of all the contingencies. But the exuberance… The exuberance of the fact that we exist and that we emerge in this universe. That we’re able to think. However transitory our lives are,
However painful or difficult they may be, living is something extraordinary. It’s absolutely extraordinary. It’s shocking, mysterious. It’s an enigma. And it’s touching sometimes. IN MEMORIAM OF ANA MICHELLE SOARES (1982–2023) “AGING IS A PRIVILEGE I WON’T HAVE. I’D KNOW WHAT TO DO.
I’D KNOW WHAT TO DO WITH EVERY WRINKLE AND I WOULDN’T CONCEAL ANY.” EXCERPT FROM AN INTERVIEW GIVEN BY ANA MI TO ANDRÉ GRAVATÁ BY SHARING HER JOURNEY WITH CANCER, ANA MI DEMYSTIFIED PALLIATIVE CARE AFTER HER PASSING IN 2023, THE ANA MICHELLE SOARES INSTITUTE WAS FOUNDED IN MEMORIAM OF TOINHO MELODIA (1950–2021)
“SAMBA MUSICIANS DON’T WRITE TO PREACHERS THEY TURN EACH ARGUMENT INTO SONG TIME IS A MEDICINE THAT TEACHES” FROM THE SAMBA “VIDA DE SAMBISTA” CONSIDERED ONE OF THE BEST OLD-SCHOOL COMPOSERS, HE BECAME A SAMBA REFERENCE IN SÃO PAULO HE WAS CELEBRATED IN SAMBA CIRCLES AND IN THE FAVELAS, INSPIRING YOUNGER GENERATIONS
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