I am in the Hospital and I hope Getulio and Leila have met.

  

I am once again interned in the hospital. I feel I must share.

2007 I had an epileptic attack in Morocco. I had never had one before so I was confused by it. I visited my friends Mounia Dadi and Leila Alaoui. Friends I knew since 2001 when we lived and studied in NY.

From Morocco I went back to the UK where I was leaving. I told my dear friend and ex-husband Haiko Ballieux and we went to the hospital. When they told me I had to do a lumbar puncture I left, sign it all and I did not take the medicines they gave me. I searched the alternative path, I looked for religious things . In months I started to see lights and I waited for about 2 weeks and then they disappeared.

In February 2008 I had a partial epileptic attack and I flew to Brazil. It was this day that Dr. Getulio Dare Rabello entered in my life and made me make an mri and many other exams. Especially the lumbar puncture. Getulio debated cases and thought it could be multiple sclerosis. I said that since they could not know I would go back to London.

I returned 2009, 2010 to do exams and had nothing. I decided to get divorced, I quitted my Phd and decided to travel like others I met in Asia. 

In 2011 I stayed in Europe, than India, than Europe and then South East Asia.

In 2012 I broke my foot in front of the Mekong walking in flat land. I returned to Brasil because my brother told me I should. In a couple of months I went back to France with my grandma and my cousin Lucia. They went to Brazil and I went back to Israel and Palestine. I bought a ticket to go to India but Michal Treger told me to stay with her and to go back home.

I came back and woke up with my tong turned to a side. Dr. Getulio treated me for multiple sclerosis. I was angry and he won me that day. He said ” you are right, it was wrong but I thought that if it was sclerosis you could die.I don’t want to loose you.” So he won me. But I still rarely used epileptic medication.

2013 I had a strong epileptic attack. And he told me “you can choose the doctor and I can choose my patient. If you don’t take fenobarbital I won’t treat you” I agreed to take it. And did it.

And I went to Europe. I met Eduardo Simantob in Switzerland. I went to England and I felt lost while I went to the Uni some days, I cried a lot, I felt I could have an epileptic attack there. I did not. I met my parents in Italy and then went to Portugal to meet Edu. I also felt sick some days there.

I flew to Thailand and felt very bad when my grandma went to hospital. I slept few hours and still felt like I could have an epileptic attack. When Edu arrived and we went to the Burmese embassy I felt bad. I went out and crossed an avenue and by luck doctors saw me and put tiger balm in my nose and took me to the hospital. The doctor told I almost had an attack, I confirmed it and said I wanted leave. While I talked I had it and still decided to leave after the attack. 

I kept having them and was taken to a Hospital and I was induced into a Coma. My parents flew to take care of with me with Edu. I stood 3 weeks in a hospital in Bangkok and they left me go even though I was far from normal.
In São Paulo Dr Getulio Dare Rabelllo was very shocked to see how I was. No one was certain whether I would get better. I could not recognise people, nor say names of fruits, or remember my password. In fact I could not even look at TVs, computers, books etc.

I suddenly got extremely well in 3 months. When I read the email that was sent about me by Edu to my friends. I was heart broken filled with hatred. Hatred made me recover. And pain never left me. Only with today I can see he did all he could. Only today I am thankful. Before I was angry, felt abandoned and killed.
Time went buy. I travelled a lot. Went out with many people and simply did not trust anyone to be with me anymore. 
Slowly I felt I recovered and I started to date Andre. In 6 months we got married. Leila came to our wedding. Andre is a wonderful man but he is quiet. I remained lonley inside.

In January Leila was killed in Burkina Faso. I tried to remain in peace. But pain kept visiting me. I started to have a headache and to see lights. I called Dr. Getulio and I told him briefly about it. He told me to see him some time, he asked about headache and I said sometimes I had it. Which is not really true.

In February I visited Getulio’s office and found out he had a heart attack the day before. After a semi marathon. I was told he was in a coma and it was controlled. 
Having been in a coma I knew that that was not true. I kept thinking he would loose neurones, he would think about that in a coma, he probably think he would give many problems to his family. And I thought he would not return because of his enormous generosity . I prayed I was wrong since I felt the same about Leila and she had died when people sad she was well. 

I went walking to the hospital at night to see how Getulio was and he had just died. I went up. I hugged his wife. I was really broken. I saw dr Caio crying and I admired him for that.  He seemed deeply human. Janete, the secretary, asked me to get another doctor and I said no.

I left and could no longer eat. Suddenly came lights, pain and I waited 2 weeks and then I got Caio’s number. He accepted to see me the same day. I went there at night. I told him it all. Janete sent all the information by e-mail. So last Tuesday, I came to see him and after I came to the Hospital. 
They did it all. And for the first time they came to a resolution.

Dr. Caio came last night and said ” I am sad that Getulio is not here to know what you have. He never asked you to do an angiography because it is an invasive exam, he did all the work and this time it became clear that you needed to do this exam. You have cerebral vasculitis. It is not a symptom it is what is behind everything ”

This is my enormous story. This my disease . It is auto-imune. I stay still some days here getting cortisone. And then we will finally know what to fight against. And next to me are my grandma, Dr Caio, Laura, Dr. Euthymia, Andre, my parents and most of my friends. And I believe that Leila and Getulio are there helping from above.

Leila Alaoui

 

 

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What to say? Leila has left this world. She was a victim of an attack of Al Qaeda in Ouagadougou. She is my friend. Will always be it does not matter where she is. She lived with me. She called me weekly after I almost died in Asia. I knew her house in Morocco. I almost visited her in Lebanon. She came last year in September to my wedding and she was part of the ceremony. And I barely gave her all the attention I should have.

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I do not know what to say but what I feel I must say is: Please do not feel anger. Do not feel Rage. Do not want revenge. Leila would never preach that. Leila’s pictures say more than the beauty,  it shows she always got the soul of the person, and was allowed by people of places where they believed they were looking their soul. Leila who liked the borders, who went to all over to search the reality of things. Leila deserve nothing but your love, respect, prayers.

 

Soulaimane who is her brother, the  one who knew her, and was so close to her, was the last to see her  here. Pray for him. For her family. Do not spend this time to feel anger. Despair is common but we must let go in a lovingly way.

 

I remember she made a Moroccan style thanksgiving in NY to all the abandoned in the Uni. Those who did not have a family there.  She thought of them. It was in our house. We barely knew the people who came. And they thanked us for that so much. She hosted my dear childhood Brazilian friend when she survived the house burning in NY. There are so many good things to say. But, I will stop. I will not speak of that. I pray, I prayed. Mixing all of the religions in the world. We wish you Leila a safe passage. I wish you who are here to not let anger invade you. You who know her must know she would be the last to want that.

 

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With love,

Jules

http://www.leilaalaoui.com/

Chile through the hands of Chileans ;)

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Since I had written the last post I felt  like I  had to tell  Manuel, who is my Chilean friend who lives in Brasil, after all,  I didn’t want to offend him. He was amazed that I had actually met people who he felt seemed like the upper class of Sao Paulo 🙂 He told me I should have told him I was going there not knowing anyone so that way he would have told me who I should meet. He immediately put me in contact with many of his friends. I smiled, was happy, and thought it seemed like a secret society. And I met his friend and his friends.

 

We took a bus to Vina del Mar. We were met by Matias who was a teacher in a school. He took us to eat and drink, got us bikes and we rode all the way to Valparaiso. Another friend had come to show us things. They were great people. And my favorite person was Mr. Moises Matias’father.

 

Moises was older and asked me to say what I had thought about Chile. I was concerned about what to say but was honest and said:

 

“I think people are apathetic to things here. I am sorry to say that. But it is so hard to get people to talk to us.”

 

To my entire surprise he replied by saying things like ….

 

“I am not a nationalist. And I agree with you. We are descendents of fear. My son, and his friends can speak. I grew up going inside of the houses of policemen , our family gave them sweets and then one day Pinochet came. They were no longer our neighbors nor could we ever speak. I am lucky because I was never arrested and tortured but many people that I know have been. So to this day many of us do not speak. We grew up to not trust not even our neighbors. Anyone could condemn you secretly.  I prefer a corrupted democracy than any dictatorship. I also do not support what the USA does. It is true that Pinochet is associated with economic growth but the price we had to pay for that, cannot be supported.”

 

Moises is a shoemaker.  His family hosted us. He spoke to us. He explained to me why people in the south wanted the death of the Mapuche. The Mapuche is an indigenous population. He knew way more about the cause than the younger boys. He admired the fact that the youth could speak. I am very thankful to Moises, Matias and Andres. They showed and told me a lot of things.

 

And then I had short time. Enough to see again an old lady in Santiago selling some cards. I offered her a meal. She cried. I was still doubting whether she was simply crazy but I invited her to seat with me inside of Juan Valdez. She told me her story never making a single mistake about it. Every single time I asked her the same thing. She said the same. She was hungry. She ate fast. She lived with two grandchildren. The mother had disappeared 7 months ago. And she was so shocked by it. And then her 41 year old son. The father of the grandchildren fell in love with another woman and left them. That had happened just 2 weeks ago.

 

“I am lucky that I have my own house. It is made by wood but it is mine. The school I cannot pay. I cried a lot and they let them stay there this month. In fact the only problem I really have is that my gas finished. So thought my neighbours have given me some food I can’t cook. I give them bread in the morning and while they are in the school they can eat. Thank you so much for this meal. I hope I can sell those cards now that is close to Christmas”.  She never really asked me for anything. I believe she was lonely. Despaired and very hungry. No one has thanked me so much for a meal before.

 

That happened yesterday and we took the tube to go to the airport and suddenly we were trapped. The metro stopped and women dressed in red and yellow came running in the station. People around me were not too concerned and I was trying to pay attention and suddenly the speaker said that someone had tried to commit a suicide. The lady next to me asked me whether I had understood what had happened. I told her, I had barely understood it.

 

“The people you saw running outside is part of a special force there is there to pay attention on people in the platforms, they are there to prevent people from jumping in front of the metro. They are not always successful like today. It happens many times here in Santiago.”

 

I was rather surprised that such a service existed. I am aware many people jump in front of trains but I do not think it is so common to have people specialised to prevent that.
I left, with more cordial feelings to Chile, I left with friends.  But I left thinking there are many people who are depressed, lonely. It was confirmed to me that the roots had to do with colonialism and  the fear created by Pinochet. People do not speak that much. And to enter Chile, I guess it was necessary for me to actually tell my Chilean friend in Brazil. I wish I had told Manuel way earlier. Could have heard way more things.

The Lack of Tales- Chile

  

I sometimes wonder whether we are the victims of having little time to visit this country or rather they are the victims of being so isolated by mountains and Pinochet. Differently than most people who might have loved this country I feel rather bored by it. Sometimes it feels it is very  non Latin America, people don’t speak much, or sometimes someone is open to speak to say they wish the  destruction of the Mapuche. They speak of their terrorism, they speak about how correct was their taking of Bolivian exit to the sea. So then they seem like colonisers. So, though I was asked to have tales to tell about Chile, and Chileans all I have to say it is a country that feels apathetic to it all.

 

Sometimes I stopped and though it could be simply the amount of mountains, rivers, that made it feel so slow but then immediately came to my mind how the Himalayas have never taken away the personality of those lands around them. How could you forget being in the Himalaya. Here I can support the statement that the wine is good, the mountain is beautiful, and it feels peaceful but unfortunately I cannot say much more. It feels I will forget most of it entirely.

 

I might be the victim of having seen too many places in the world so I expected more. We have spent more than 16 hours in a bus to cross this country by day and night and still was not enchanted by it at all. I would advise my friends who love mountains to go to the Himalayas. To those who want to see Latin America to go to Venezuela, Colombia, Peru, Bolivia,  Brasil  etc…but not really here……

 

So the tales I have are not from Chileans…. those tales were boring. Were racists…. I thought the tales that came from Colombians and from Indians were more interesting.

 

The coffee here is always burnt. So I went to Juan Valdez. I learned the story behind Juan Valdez which is not a person. It is a common name in Colombia. The coffee in Juan Valdez  comes from many farms in Colombia. There I met Pablo, who is gay, and came when he had broken up with his boyfriend in Cali. His homosexuality was never a problem with his family. But latin american as he is, he explained, the end needed something radical. So he moved to this country and found a Chilean gay lover. But  even while I was here he was bored by his apathy. Pablo’s father is a coffee farmer who also sells coffee to Juan Valdez. He told me a lot about how it is that it works the organisation of Juan Valdez. And then I met Andres from Medellin who told us he  also came from a coffee farming family and answered to me a lot about Escobar.

 

As it had been told to me by another Colombian, Escobar was still admired in Medellin by people who came from poor families. Today that was confirmed to me.  Escobar did a lot to people in Medellin. And then I also met Indians. First I met a whole family in Puerto Varas that thought Chile was rather boring. Yesterday in my eternal attempt to return to India I took Andre to Saffron, the indian restaurant closed to where we are staying. I am also in the house of a Indian Brazilian , who has been my dear friend for many years. As I entered this gorgeous restaurant I had more feelings than being days here. My senses were immediately touched. Strong incense, many people coming towards us to speak and to ask what we needed, Indian music, food with lots of flavour. Lots of colours surrounding us all over. It was wonderful food, amazing tea, flavoured dessert, perfect plates and the right to eat with your own hands 🙂

 

Those are my tales….. The nicest people I have met here were Colombians, Indians and Argentinians. The Chilean do not seem to be that interested in talking to us. Did not seem to be interested to know their indigenous people. It feels like a great place to be retired in. Sometimes it feels like you are in America. Not Latin America. This does not feel like any country I have been in Latin America. I know this is a poor tale. Violent tale but I do not even wish to ever return here. There so many beautiful mountains all over the world. So many nice countries in Latin America. To those who search total peace and silence this is the country. I rather go to places where there are many tales… but that is just me and luckily Andre also wants to go there.

Love,

Jules

ps: There are still some days…. maybe it could all change 😉

The Gift…. Our Gift :)

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The gift  according to Marcel Mauss is the foundation of reciprocity. We give gifts to create an eternal relation of dependence to the other. There is a whole book and thought on the idea of gift exchange. But that is not what my post is truly about. It is about the gift  that we chose for our wedding.

We realised we needed little. Andre was kind enough to accept to live in the house of my grandmother. It is a huge privilege to all of us. I want to be here always.  He agreed and therefore luckily we did not need anything else material today. So we both agreed immediately, we do not need a gift.

Others did not understand this idea so well. They thought they needed to give us something. And so we created our gift. People’s presence in our party which was in another town to 99% of the invited people. That was our gift. Their presence. And again that was not good enough. So we created another gift. A donation to Nepal.

I forgot to tell people why. Many people thought it was a hippie idea. Some thought it was not nationalistic to give money away. And here I am to explain why Nepal.

We are aware there are tragedies all over the world. And we are aware we could never give that much money. Not even for one cause.  So we chose only one cause: Nepal. To give at least a little.

Andre nor I have ever been to Nepal. But we love mountains. And we were together when there was a huge tragedy there. Not a political one. Those have always many sides to them. It was a climatic one. To those who do not know, Nepal it is located in the Himalayas. Bordered by Tibet/China and India. Nepal has eight of the world’s ten tallest mountains  there. The highest point on Earth is there. So yes, you got the idea…. it gets cold. To those who do not know… it is not a buddhist country. It is  a country populated by Hindus, Buddhists and some other religions. It is populated by people like us… human beings.

Their economy depends a lot  on money that comes from tourism. So yes, a climactic tragedy in Nepal has destroyed not only houses,  temples, trees, people but the tourism industry. That is very serious for them. They depend on that money. And as mentioned before crossing these borders led them to places that are overpopulated and have their own political problems.

So we chose Nepal. And I chose an institution that my friend Denise told me about. She said it was a good one. I met Denise in front of HH Dalai Lama in India. Then she took me to meet in her private meeting HH Karmapa. Then she asked me whether I could bring to London Lama’s clothes to Lama Lobsang. He became my friend. The tibetan Lama teaching Buddhism in Europe came many times to my house, and I came to his. After that Denise also introduced me to Lingtrul Rinpoche. So, yes, I trust her. The name of the institution is ajudanepal.org. It is a Brazilian institution and that way we could make deposits here in Brazil.

So in the day of our wedding I received many envelopes with cash and checks. So, back in Sao Paulo I deposited the money that was with me in the bank account of Ajudanepal.org

And then two things happened….some more money appeared here, other people gave, Andre had gifts of others, my grandmother and I did not know what to do now.

I decided before giving more money there I should contact the people. Had yet not spoken to anyone there. Since I could not yet reach anyone in the ajudanepal I decided I would make a donation here in Brazil. I could not keep that money with me. I asked Nininha, the cleaning lady, where did she recommend. CCA a school in Capao Redondo. Capao Redondo is a violent neighborhood and it is where Nininha, the cleaning lady, lives and it is where her child goes to school.

Being the honest woman that she is. She asked me to talk to people in the school first. So I did. They thanked me a lot. Some of this money has been given to a school in a poor  and violent region to buy food for children.

Just now, I managed to speak to someone from ajudanepal.org . He was great. He knew Denise, he told me people were going now to Nepal. They would send me info.  I was happy because anyone who has studied conflicts, like me, knows that in the beginning of a tragedy lost of people give money. It is always complicated because there is still no structure for the use of that money, there is waste and easy robbery of the money. And finally when they are no longer in such a complicated stage, they are also no longer in the News. So when people most need and can use properly the money they rarely receive it. They are distracted by a new tragedy in the News.

So we chose Nepal. Things are calmer now. They still need help. Now, however, few people help. So we decided it. This would be our gift. The gift of all of those who left them with us. They gave to Nepal and to a school in Capao Redondo. The receivers on both ends have now spoken to me.

So let’s hope we have made  in Mauss’s terms and act of reciprocity. Solidarity is reciprocity  in my mind. It is not in that “negative” term I feel reading Mauss. To me it is in the thought that we as human beings and all that exists is made of atoms. So we are reciprocal to all, after all they are just as connected to me as anything else. So our gift go far, I have not seen these people but we know  we carry the same matter. They need them way more than we do. A gift is always a gift to all of us.

Our Wedding- André and I

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I have been asked by some dear friends from abroad whether I got married . I guess they have seen my pictures on Facebook and they were very surprised about it. Some of them had spoken to me when I did not even have a boyfriend in the beginning of this January 🙂 So I feel I must tell. I know, many people do not feel like they have to do so but since my life has been too public for very long, why not tell. And mostly I am too thankful to too many people all over the world.

This tale carries two thoughts. One is that there is no perfection in any life. There is no fairy tale but in any tale there is possibility to find happiness again. It does not matter how broke you have been. How hurt you were. How abandoned. How close to death and how many people told you there was no total chance to not recover. There is always a possibility. Life is TAO, it is a path. A path of possible total change.  The impermanence, as the buddhist say is a reality. It is not a threat. It is your acknowledgment of this that is your greatest friend of all.

I write first to thank many of you. Friends from destructed countries. Tortured people. And people who are carers. Doctors, and cooks. Those who are friends. I write to express that my total happiness now does not come without the fear of it being suddenly taken away. I write to avoid the fear and to thank happiness of today. Today is where you always are.

Here goes the tale. My tale. It is one more in my path.

I miraculously healed. Not without help. Not without friends, doctors, and family. I lost many neurons, and no one knew how that had really happened. But even in silence I knew I had not lost the ability to have new synapses. I was suddenly visited by hatred. And then by nothingness. I accepted the total and complete life without trusting anything deeply. And so came to help my deepest recovery Tibetans. The teachings I have met. And suddenly I drove alone. I went to the beach driving alone. Without really telling anyone about it.I knew I did not remember the path, but I trusted my body would.

And why should I really care then? I was not afraid of death. I was not afraid of people. I expected nothing. I hoped for death.  And so I met in the internet in a dating site Andre. He was nice but to my perception he did not like me, nor did I like him. Yet we both liked mountains. And so we started to walk together. Under the rain. And that day I realised I liked him.

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“ Who cares, I thought. I need a friend. I cannot kiss this guy. It was not for puritanism it was because he liked mountains like I did. I thought if I would kiss him, I would forget him the following day. I did not trust anyone. I did not mind that but I was selfish and thought I needed a friend who was a mountaineer, someone who also wanted to climb Pico do Corcovado.”

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But then on the third day we kissed. And he invited me to visit his friend Thiago and as he drove… I could not believe it. He had slept in my house two nights… and nothing had happened…. but the day we kissed he took me to meet his friend in another beach. And as he drove, and as I heard the wonderful music he had put…. The sun touched my face as I looked at the sea around and I felt TOTAL joy. I was in shock. I was actually afraid of it.

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“Can I really still feel that much joy? How dangerous could that be?”  But somehow I dismissed the fear and took the path.. Not without hesitancy

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And we never left each other. And we were together. We climbed Roraima and spent 45 days in Venezuela. He who had abandoned masters and job. Me who had abandoned marriage, love, Phd, and almost life. We spent about 6 months 24 hours a day together.

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Of course, I tried to run away. after all, I am the courageous who is the ultimate afraid person.  Not afraid of Slums, but afraid of those who are really inside of your soul. Who is not afraid of full trust? But when I ran away he held me. And we travelled and spent time with friends, and family. He took care of my grandma and her friend Sonia who is 89.

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Then he became adored by my grandmother. And me, being me,  I wanted to go to India. It took me a week to convince him to go India. I eventually did. And in the same day…. He is offered an interview. And he is hired. Most people would think. “WOW that is great!” I am not most people… so I though “We can’t go to India anymore.”

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Andre is an electric engineer. A man of actions and not of words like me, and those who do little 🙂  So he said. I ll work  and next year we will have more money and we will go.  He fixed things in our houses too 🙂 And me, being my selfish me said jokingly  “Oh… I cannot believe it, you are stollen from me for a job?!?!? We will not be together all the time! To compensate this loss let’s get married 🙂 “

And he said yes. And I said

“ Then let’s  do it secretly!” I was still thinking it was a joke.

“Ju, are you trying to hide it?

I was amazed  actually and said: ” Let’s consult my grandma.”

And she said “Great Idea. Obviously we should do a party, what a silly idea to hide it!

And I was happy. Very happy.

“ Andre, let’s do it this year in september the 26th. My grandmother will be 91. And it will be spring”

Being a practical man he is, he said…. but that will be in less than 3 months… we have a short time.

“ Yes, but my grandmother will be well and healthy!  Next year is monday. And we should do it in Ubatuba in the beach house. We don’t care about rules and typical weddings.”

“ Yes. Ubatuba is the place. Let’s do it.”

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And so we did. Asking the blessings of Tibetans, nature, and all who were there. And it was a wonderful party. It was on my grandmother’s 91 birthday.  It was on the beach. There were friends from all over. Dear friends. People from our family that we love. The ceremony was made by Laura, who is a great friend  and who is a neurologist and from the religion called “espiritismo”. And she actually knows my brain 🙂 And she met Andre to know him. Being a doctor she is a specialist to look at a person and make a quick judgement.  When she met him she said:

“ I have something to say.”

I was afraid…..

“ Jules, you are super egoistic but this is the first time you actually really love someone. And this man is someone of few words and profound perception of reality. I would love to do the ceremony.”

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And together we created the ceremony. We had dates for the blessing of the middle east and north Africa, we had something like a tibetan ceremony but made in south america. We are in South America. Which means we mix it all. We respect many religions. At least Laura, Andre and I do.

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Rather than tea in a teapot like some Tibetans do. We had a colombian hand made work of art in homage to the sea, the tea inside was cold, it was Flor de Jamaica ( hibiscus) and it was what we drank in Venezuela. The tea pot ( vinera) was brought by hand in the path in front of the sea by my friend Alondra who came from Mexico. The dates were carried by my friend Leila who is Moroccan but lives in Lebanon. And there was the music played by my friend Cibele while that happened. That was Jacob do Bandolim.

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There was a judge. And the great film maker, and great friend Fellipe Barbosa made last minute a little film of the civil ceremony.

And the blessing were made by all. In many little acts. I obviously talked a lot to explain who we were considering most people did not know us together. And I explained there was nothing like a fairy tale, nor was I pregnant. There was simple joy of being together for months 24 hours a day. There was me explaining that I had never expected happiness could knock on my door again. And then there were blessings from our parents caring dates to Andre and me. I chose  to have two best man and one bride woman and  Andre had two bride women and one best man. They carried the glass filled with red Flor de Jamaica tea. They passed hand to hand wishing blessing to us. We drank them. Laura told us it was our path so we gave the tea to each other and we drank.

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Than we asked blessings from all. Our ceremony was made by all. The blessing of thoughts was made under the silence of voices, the music of the sea and the  flute.

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Of course, after all that non typical ceremony there was wonderful live music. Choro and Samba played by people who I know and drove hours to get there..

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The party started at 11 am and finished to some the following day. I went to bed around 3 am. We danced, we ate, we climbed trees. Children even went to the sea. There was a little drizzle of drops of rain which we took to be blessings.

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Laura as a neurologist said  many wise words…. and said she would quote a self help book “ Love is not an emotion, emotions are fleeting. Love is a daily practice.”

So now, let’s hope…. let’s all attempt to practice it daily. Thanks a lot for all of you who have asked me about it. Thanks a lot for all of you who came. All of you who still write me.

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Love,

Jules

Oliver Sacks and the power of his words.

I read that Oliver Sacks died yesterday. I am aware many people might not know who he was. He was a neurologist and a writer. He became sick and died. He was aware this was about to happen. I read he was still playing piano, swimming and writing to his friends when life slipped away.
I am aware some of my scientist friends might feel he is too much of a media person.
I, on the other hand, am grateful for the words that I have read through my life that came from his books. Books that could be read by people like me. People who were not neurologists:)
I remember that when I suddenly could play piano better than I ever could before… Just after I lost neurones I thought about his book musicology.
I remember that when I could not even draw a clock to Dr. Getulio I thought about another one of his books.
I remember that when I could not recognise the keyboard, nor see things in front of me I thought about “the man who mistook his wife for an umbrella”.
So, I searched for his last article. I had read it months ago. I was moved than…   It is so beautiful….it is called “my own life”.
You don,t have to be a doctor to understand it. It is about life. His life.
So I share his and Hume’s words.
With love,
jules

My Own Life

Oliver Sacks on Learning He Has Terminal Cancer

 
HANNA BARCZYK
By OLIVER SACKS
FEBRUARY 19, 2015

A MONTH ago, I felt that I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out — a few weeks ago I learned that I have multiple metastases in the liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. The radiation and lasering to remove the tumor ultimately left me blind in that eye. But though ocular melanomas metastasize in perhaps 50 percent of cases, given the particulars of my own case, the likelihood was much smaller. I am among the unlucky ones.

I feel grateful that I have been granted nine years of good health and productivity since the original diagnosis, but now I am face to face with dying. The cancer occupies a third of my liver, and though its advance may be slowed, this particular sort of cancer cannot be halted.

It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can. In this I am encouraged by the words of one of my favorite philosophers, David Hume, who, upon learning that he was mortally ill at age 65, wrote a short autobiography in a single day in April of 1776. He titled it “My Own Life.”

“I now reckon upon a speedy dissolution,” he wrote. “I have suffered very little pain from my disorder; and what is more strange, have, notwithstanding the great decline of my person, never suffered a moment’s abatement of my spirits. I possess the same ardour as ever in study, and the same gaiety in company.”

I am getting Married.


Yes it is true I am getting married 🙂 Most people I know asked me why. Who with? And so I felt like telling it in this one message. How it is that it happened.

We all know I almost died. Not so many people know that I felt hatred, and anger, betrayal, abandonment. Some might even know that I had simply given up completely. I did not even want to live anymore. And definitely did not believe I could ever love again.
And so I joined Tinder. For all kinds of reasons. And one day I met Andre. He was at the beach like me. He had quit his Masters, his job and was there taking his time resting. I was there recovering my mind and my body. And we met to drink coconut. He told me he would like to climb Pico do Corcovado. I immediately considered that that meant we should be friends forever but not lovers.
I went home. We woke up and it rained and we did the track under the rain. I wanted to go to that beach no one wanted to do it, he agreed to go like that. And that day I already liked him and decided I could never kiss him because the mountain was way more important than one more kiss. I prefered the climber than one more kiss that I would forget hours later.

And then I got my period that same day and I could not do anything. No climbing, nor difficult tracks. I had period cramps. I told him about it. He did a massage to eliminate my pain. Then in hours we kissed. And then he never left my house.
Carnival was about to come and we decided to go to Venezuela to climb Roraima. He met my parents, my grandma, I met his family. We went to the north and then crossed to Venezuela. We spent 7 days in Mount Roraima and then spent more than 40 days in the rest of Venezuela. We crossed the country learning all there was to be learned from all sides.

We came back and we took my grandmother and her 89 year old friend to the beach. We walked every single day with them. We went to the sea. And suddenly I was happy beyond belief.
“Let’s go to India?!””

He was apprehensive. The tickets were expensive. He realised how important it was for me to go back to Asia. He agreed to that. And then he was called for an interview and two days laters we are in Sao Paulo and he is hired.

“Are you sure Andre? Do you want to live in Sao Paulo? We can’t even go to India anymore! You are not even from here.”

“We can go later.”

“Let’s get married than ; ? but it has to be secretely?! ;)”

“Why do you want to hide it? ”

“No, I am apprehensive. I already got married before. Parties of marriages are so complicated. I will ask my grandmother what does she think about a secret marriage.”

“Julieta what a silly idea. We will celebrate it. ! ”
And then my parents were totally into the idea. So were his parents.
So, we are getting married.

It will be on the 91st birthday of my grandmother. It will be on the beach. It will be spring. I will be barefoot. I have a dear friend who will do a Tibetan Brazilian ceremony for me. I met her in front of Dalai Lama. She took me to meet Karmapa, Lama Lobsang, Rinpoche. She is my friend. The Judge will also come.

There will be music played by amazing musicians who I know, and who I have seen playing so many times in Cidao.

The photographs will be done by someone who became my friend this year. I met her in the beach. I also met Andre this year.

I did not invite many people. I simply invited close friends, and people I deeply respect.
My invitation is done by a great friend. It carries a tibetan eternal knot on it.
The gift is the presence of these people who can come to our party. It will be also a donation to Nepal.

I am not getting married because I am pregnant. I am getting married because the past 7 months I have spent 24 hours a day with Andre. Those were wonderful days. There is nothing exceptional about it. Simple joy to be alive, to love and to be loved.

And now we plan to go next year to Iran, to Burma or India for our honeymoon.
With love,

Jules.

A letter from a Brazilian Palestinian to a Brazilian Jew

One of these days, I read the letter that was written by Mohamad Jehad Ali Tayeh, a Brazilian Palestinian. It was written to Michel Gherman who is Jewish and had asked his Palestinian friends to write what they thought about anti-semitism. He said that he had many answers and posted this letter on Facebook. It is in Portuguese, so after I read it, I decided to write to Mohamad to ask whether I could translate it to English, so that I could send it to my Israeli and Palestinian friends. He told me I could. So, here is my attempt to translate what it is there.

“I studied in the middle of the 80’s in a public school in Sao Leopoldo. Though it was a public school, because it was located in the centre of town, the school was attended by traditional families that were mainly from German origin. I believe that at the time there was not such a gap in standards between the quality of public and private schools, as exists today in Brazil. In a certain year, the Federal Government gave us the usual books but also a notebook, with the following slogan: “Education for all”. I remember that one day, when I came back to my desk I found all my notebooks completely scratched in red. On the top of that slogan, someone had written: “Not for Turks!”. I was about twelve or thirteen and I did not have the maturity to raise my hands and voice to protest against it. At the time, I believed I was condemned to be forever simply the son of the Turq, who owned a shop in the centre of the town. That was simply what I would be. This and some other unpleasant experiences happened. Some were not cruel while others were more profound and serious. These experiences became part of my daily life and have shaped who I have become. Most of the time I remained silent, and the price of this silence was high.

My Palestinian father raised me with the belief that on top of being persecuted in our homeland we were not accepted in many other places and even when they seemed to accept us, we were at best, simply tolerated.

There were subliminal messages like hanging a catholic rosary in the doorknob of our house, which my naive Syrian catholic mother believed it to be a gift. There were even rules against us attending the clubs of the countryside of the state. Because of all of these experiences, I have developed a profound repulsion for racism. This degrading feeling that flagellates humanity persists even while it is always fought against it.

As a result of these experiences, I see myself in the obligation, as a Palestinian, to show my repulsion in relationship to how some political sectors have been treating the Israeli/Palestinian conflict. Beyond everything, I want to make it clear that I am a harsh critic of the Israeli colonial expansionism. I have seen closely the ills that this politics had and have created among the Palestinian people. But I have used my profound knowledge as a Palestinian to become more knowledgeable of the real situation in order to be able to have a more humanistic reading of this conflict.

It does not matter who oppresses the Palestinian people. What matters is that we cannot fall in the trap of judging a whole population because of the political decisions of a State. If Israel is an oppressive state against the Palestinian people, Israeli citizens have the obligation to change that, but they cannot be blamed for it.

I say this because I am very concerned about the rise of anti-semitism as I am concerned about the growth of Islamophobia. There are today inside of Israel several organisations that fight for Palestinian human rights. These organisations are without a question, fundamental for the search of a peaceful resolution to this secular conflict.

In Brazil, specifically in the Rio Grande do Sul, there are large Brazilian Jewish and Palestinian communities. These communities have worked honestly and hardly for decades to develop a harmonious and civilised relationship between these two communities. We cannot allow the harming of this relationship because of inflamed, incoherent, irresponsible and many times criminal discourses. We cannot be silenced in the face of injustice. We cannot omit ourselves when we see people being stolen from their basic human rights. We cannot ignore when violence intends to give answers to just demands. We cannot in any way endorse the judging of a whole people. There should be Education, peace, freedom and justice to all.

For that reason I affirm and scream from the top of my lungs that we should fight against all the forms of discrimination. Therefore simplistic perspectives that use anti-semitic and anti-judaism colours should be denounced just like Orientalist and Islamophobic discourses that are used to refer to Arabs and Muslims as common and similar groups.

As a Palestinian, I affirm that the anti semitic is my enemy like it is the enemy of the Jew. Anti Semitism should not be used, in no way, in my name. It demoralises and brings shame to my cause. It cannot happen under my name.

Divali, and the secret pains one carries within.

  
Drawing by Thomaz Bondioli

She can’t really tell what comes first, the air pushing her suddenly aside or the explosion that makes her heart skip a beat. She is almost certain that everything suspends and stops in a vacuum inside and outside for a millisecond. She looks at the petrified tourists around her. They are Israelis, and for them everything stops in a different place. Everything stops because they feel a millisecond of terror, until their mind reminds their bodies that those are bombs of joy. It is Diwali, the Festival of Light in India. Tourists do not understand that these firecrackers not only fight evil, but that they also celebrate the return of Krishna. And both the tourists and her do not understand that behind Diwali there is an awareness of one’s inner light. She might have once known it, but now she doesn’t anymore. How could she, if inside of her she feels less lit.

She wants the bombs to keep exploding to get again and again a millisecond of suspension of pain. Not even looking at the children laughing while throwing firecrackers at the legs of Western tourists does it anymore. Western tourists never understand that they are children, who do not understand it is dangerous. She used to feel amused looking at the tourists jump and look for an adult to complain to in total anger. “They are crazy! Don’t they know it is really dangerous?” Adults always agreed, and explained that children were amused by the scared faces tourists made. They did not understand. The truth is that also adults were amused, so they never truly reprimanded the children. They did of course not tell the tourists that. But they felt resentment towards their shallow hellos and goodbyes. They felt resentment to the bargaining foreigners who could not tell the difference between the good and bad silver. And yet they still bargained the same way. They felt contempt for these people who came and sat the whole day smoking jars, eating, laughing and making lots of noise till much later than acceptable. What she hated the most was when these young rich kids bargained by saying they had no money because they were students! When she knew that being a student was the dream of so many around her. No that is not what she hated most. What she hated most was that her own brother, a Brahmin, a pure person, now defended them. He even learned their language. He now lied to their parents and smoked, and drank and had accepted the invitation of an Israeli to participate in a barbecue. A barbecue! She thought many times before about telling her father. She should have done when it first happened. When her brother first had the idea to transform the guesthouse into one that catered for Israelis.

“Why Israelis?” Her father had asked. And her brother explained that they came in groups, and they told each other about it. It would not take more than satisfying one of them and all of their friends, and friends of their friends, and friends of their friends’ friends would come. “It is good business papa”. Her father was suspicious at first. Mixing so closely with foreigners could not possibly be good. But his son had mentioned something that put ideologies and fears aside: money.

And so it was that her father allowed him to take care of it all alone. It went little by little. He had to first learn to do the food that they eat in their country. And then they had to just find a way to allow them to make as much noise as they wished, and to smoke anything they wanted. It seemed so far away now. How was it that her old house had become what it was now. She should have said something then, but she was also curious about these girls who sat with boys smoking and laughing. They touched each other in public. She could only see them sometimes when she came to deliver something. She should have told her father then, but she did not know it would go so fast and now it was too late. She could not even recognize her brother anymore. He was now so distant. He never spoke to her that much but he was still part of the family. Not now, now he sat with them and laughed their crazy laughter. She knew it was not real laughter. It was laughter to distract. Laughter that worked for him as the bombs now worked for her.

She suddenly realized it had happened again. She had repeated the whole circle in her mind of how it was that her life was destroyed and this time she did not even hear any firecrackers. She wanted to cry, to scream, to run away. To swirl time backwards and run into her father’s office and scream, “Do not let Pratheek do this Papa! Lets just cater for Indians!”

And every time she swirled time backwards she could see one more detail of how it was that now she stood where she stood.

One more possible exit that she did not take because she was always afraid. On the first exit out her brother would have been disappointed, on the next possible gate out he would have been upset and now she regretted not having taken the first exit out. Then the next one would make him angry, and then the next furious. And then it did not matter anymore because her brother was trapped, he was gone. Now any exit she took would just cause pain to her father. If he ever were to find out his own older son now ate meat! MEAT? He would feel the same pain she did now. He had no health for this. So she helped her brother out taking the road to his own entrapment.

The wind dislocated her violently. It exploded so close to her that she was pushed aside. Was it the explosion or her own weakness that made her fall to the ground? She did not know. A friendly blond girl dressed in colourful dirty clothes, with dreads in her hair shouted at the children.

“Are you crazy, you almost hit her!”

The girl looked at her preoccupied. Enquiring whether she was ok.

She hated the girl she had never seen.

“Let them explode their firecrackers. Let them hit my leg. I am like them. I understand them, you don’t. Maybe then I can forget that look. That one look”.

She said nothing. She looked down. She would not thank her, she would not smile. She hated her, and all that she represented. She did not need her help. She did not need to be saved from the firecrackers the children threw around by a foreigner! She wanted to tell her that. She wanted to shout at her all the trapped anger she had inside. But she did not. Her greatest subversive act was to look down and remain silent.

Maybe it would have been better if she had not known. Maybe if she had not gone that day to deliver an unimportant message she would not have understood so well why he was so distant. Maybe if she did not know she could have had imagined that that was how it was supposed to be. But she had seen it, and the knowledge of it did not allow her to be able to change anything.

She wanted to scream at him. She wanted to run away from her own self. To vomit herself out and let the body lay there on the floor. Even if she could not understand what would be left. Was the pain in her body or in her soul? How could it be that it was both, and even vomiting herself out would not solve it. That is what it was, she was trapped, and she trapped him too.

She remembered how lucky she felt on the day when her parents announced that her arranged marriage was to Mohan the boy she had secretly loved her whole life. She imagined from that day onwards every single ceremony of the wedding. She imagined how she would walk around the fire, every circle making a promise that was more and more profound. She daydreamed about the saris, and the Henna and the exchange of gifts and where she would put her hand in the wall. How it would be marked that his family home was now hers. She knew she was probably the luckiest girl in the whole of India. For the whole time she was away helping her grandmother in the farm she thanked the gods every single day.

She was so happy that she had even forgotten how distant her brother had become. So happy that she thought it was a good idea for Mohan to work in the guesthouse too. Retrospectively she realized that it had in fact not been that clear to her all that she saw now. Those gates out there were not clear then. In fact they were not even visible. She might have been even happy that her brother was becoming more open, and so learned. How could she have been so stupid? How could it be that things become only so clear when you look back at them? Maybe it was a punishment for being so distracted with her own luck.

It did not matter she was too tired now to even scream. Too tired to tell the blond girl anything. She felt no strength to even stand up. She secretly wished those were real bombs. She just wanted her mind to stop. But it did not, her mind did not abandon her, and within herself she had to once again, in spite of her own desire, walk back the streets to deliver that unnecessary message in the guesthouse.

She walked again through the streets inside of her. She remembers the joy that now seemed so stupid. She remembers the thankfulness to the wind for cooling off her skin a bit on that beautiful day. She is walking as paused and peacefully as she could possibly walk, when her own body wants to run there. Her posture is flawless. Her hair has just been oiled, her sari is perfectly in place. She climbs the stairs gently, and walks towards the restaurant of the guesthouse. She can hear Mohan’s voice. Her heart beats stronger. She gently slides into the room.

She feels beautiful as she has never felt before. She cannot see anything else but him. Nothing else exists. He does not see her. How long does it take? She looks at him, and feeling invisible things start to materialize around her. Little by little she starts to hear other voices, and see other bodies. She can see now he is sitting with them. He is laughing with them. Why can’t he see her? He looks so happy.  She admires his joy. She observes when he suddenly becomes quiet. Why is he not seeing her yet? He is looking in her direction but yet he does not see her. His look changes, it communicates something in silence to someone. It is a secret look, she has never seen it before. It is a knowing look. It is an intimate look. It is in her direction yet it is not for her. His gaze flies through her and behind. She suddenly becomes petrified. Her whole body knows it but she still does not believe it. She gently and fearfully follows his gaze. What is he seeing? She follows it meticulously inch by inch, and as in an already announced tragedy she slightly turns her head to suddenly find a foreign woman. The foreign woman does <b>not</b> look down, as she comes from another world living by different rules the foreigner looks inside of him. She knows in every cell of her body that <b>that woman</b> had taken him away from her. He will still walk around the fire with her, but he will never really be there.