True beauty relies in recognition. And happiness in belonging

I thank you all for your prayers, meditations, positive energies, support. I could not have done it without you. I really could not.

 

I am better. Not perfect but much better.

 

I no longer take any medicine. And yesterday I visited my neurologist once again.

 

It has been almost 30 days that one day I woke up with my tongue switched, paralyzed and was put in hospital.

 

5 years ago I had once had an epileptic attack while I was travelling Morocco. I was sleeping alone and knew not I had had one. Later on, I eventually was put in Hospital. It was then, that I met my neurologist. An important neurologist in Brazil and in the world.

 

At the time, they investigated what was happening to me, and it was established that my immune system was attacking my brain, my central nervous system. No one knew why.

 

It was a terrible time. I was in hospital for about 11 days as well.  And it was the first time that I was  not  able to run away from something. I had to stand the uncertainty of it all, doing all exams I was terrified of, and totally afraid I would never be “normal” again.

 

It was established that we knew not why my immune system had attacked my brain, but that if that was to happen again very soon it would mean I had multiple sclerosis.

 

I never knew much what it meant. It terrified me. And I just thought I could no longer ever do nothing that I love. Visit the places and hear people stories. Dance.  Play music etc.

 

So for the following years I had to come to Brazil once a year to do an MRI. They terrified me. After all, a machine would tell me whether my brain was still destroying itself.

 

While this all happened in my life, I started a mystical search visiting all kinds of places. Sometimes believing, sometimes falling back to my total lack of belief. As I once put, I was an atheist in the body of a believer.

 

My exams never showed my brain was worse. In fact, it was even better. And year by year I cared less about doing  the MRI. I became less and less  to eventually not claustrophobic at all. I was thankful every since for every move I could do in my body.

 

And then I left my whole life last year and went to travel the world.

 

I visited places in Eurrope and the middle East and eventually made my way back to Asia. I was searching meaning for life. I expected it to be laying somewhere by the Himalayas, or in the Mekong. In the stories I heard in Kashmir, or from Tibetans and once I took many forms of transportation to reach the last village in Nubra Valley  before Pakistan.

 

It was paradise on earth. It took so much of me to get there. Dangerous roads, permissions, and eventually climb a mountain to reach the plateau. The place was closed to tourist till a bit before I came. And I remember perfectly well the simultaneous love I felt for being there and despair for knowing I knew I was an agent of destruction. I, and the 4  travelers companions I encountered in the journey embodied a modern world.

 

Till this day I love that place in particular. I know that place quite well in my body. And it was there that I thought something that came back to me now and then. That beauty relies in recognition.  And happiness in belonging.

 

These people where apart from it all. And they were happy like I had never seen before. The children climbed trees.  They laughed enormously.

 

But I kept going. Going and going.  Never knowing much where to before 5 minutes before going. I made friends. I loved. I heard people from all over the planet. And yet, the dissatisfaction of not belonging to anything and anyone made me always just move till the next place.

 

Until I broke my foot by the Mekong. And the Mekong is one of these places that I belong to. I love that place I spent 3 months  in like one of my homes. I knew the people there daily.  I have enormous thankfulness for the amount of feeling of belonging they gave me.

 

I still confess, I felt despair. Not knowing, what on earth was I doing? Yet the sameness of knowing I was going to be there for at least 3 months calmed me enormously. The Sunsets provided the diversity I needed. And the people that passed there told me their lives. But eventually, almost all went.

 

It is easy. Or at least it seems to be easy not to belong.  Just a bit like it seems to be easier to have many options than few. But the brain seems to not work on our favour here.  It makes us choose more freedom, more choices which almost always augment our anxiety very much.

 

I came back to Brasil despite of my desire. And from day one I ran away in my mind. And eventually I did run away and went back to Europe, to the Middle East and was about to back to Asia when I realized I was in despair and I needed to be home.

 

In fact, I needed to create a home for me. A place where I belong to. Where my absence will be noticed. I needed help.

 

I came. And I started to climb. It clamed me. It made me less try to run away. I made a decision t o stay and one day…. I woke up twisted.

 

Almost 30 days ago I woke up twisted, and half of my tongue was paralyzed.

 

I was taken to hospital. I was kept in Hospital. My same doctors from 5 years ago returned to see me. They were visibly desperate, they felt it was my brain attacking my central nervous system again. And so all kinds of exams were done.  And while, they were not ready I was given medicine for that case.

 

It was the best they could  have done  (allopathic medicine) . They could not wait because if it was my brain attaching my brain it would keep going.

 

I had not longer fear of the exams. I just had such a deep fear that the exams did no matter. A deep fear to live sick forever. To be abandoned.

 

I also did not have so much desire to live anymore. I confess  it here. Because maybe it could help people.

 

And the mixture of me being entirely more and more depressed, with my almost  100% allergy to anything given to me,  made me more and more lost.

 

I eventually begged to get out of there.  They allowed me. All exams had been done.

 

And then you all know it all. Once I left the hospital I got more allergic to the new medicine. I got to the point I could not read, nor understand or say anything. To me. It meant I truly little by little did no longer belong to this world.

 

But it passed once I found out it could have been and allergy to all theses medicaments. That it could be me very depressed. It could be something else.

 

And finally, yesterday I went to my neurologist after having been tortured in an exams  ( for instance in one they gave me shocks and put needles in my body and face and tongue). After having done an exam that put electrodes in my brain while I watched a video to measure how fast the information go to the cortex. After all my blood exams, lumbar punctures etc etc came back normal.

 

These exams together with the dozens of other exams I did proved one very very very very important thing for my doctor and me

 

That my central nervous system was not affected. This time it was my peripheric  nervous system. My neurologist by exclusion believes what I had was as a consequence of some untreated virus  I eventually got a neuritis. By exclusion he concluded that.

 

I love my neurologist. He is an amazing, and very human man. Not only do I have his cell phone, but when I did not call he would call me to know how I was doing. I am thankful for all he did to me. But I also decided to do alternative things.

 

Massages, Reiki, Cranio Sacral therapy, Florais. I have accepted all prayers, and thanked them. I have even eaten meat when my body seemed to need.

 

And I started to do psytherapy with a Reichian therapist who also does acupuncture and has studied Chinese medicine.

 

I am finally fine.  I am still tired, and weak. But I am finally fine. And most importantly I want to be well.

 

I was sooo moved yesterday that I could not explain my relief. It was not exactly happiness. It was such a deep feeling that I just could not explain it. I cried. I slept. I felt profound relief.

 

And I feel profound thankfulness to you all who have sent me all kinds of messages. I have received poetry, and prayers of all religions. Music. Much love.

 

And I believe in love more than anything else. I am fortunate to be so capable of loving so much, and being so much loved.

 

But I guess, maybe what I want to say today…apart from thank  and explaining a bit more because many people were very confused…. is the following.

 

We need to pay more attention to people who are around us. We can love people in any distance but we must take care of our actions, and of the people around us more. Because all that joy I have seen by Pakistan came from belonging. And unfortunately, we all, search for more and more freedom, and choices at the detriment of taking care of each other.

 

I really could not have done it without my family. my friends. the doctors, the psychologist, the parapsychologist, Neusa, and Claudia who works here in our house.  Had they not been here I could not have done it. I would not have wanted to have done it.

I am so thankful that is hard to put into words.

 

I am thankful to each of you for the messages you sent. So thankful because it proves me that the world is a place where love and generosity are always present if we allow it to be. If we take more care of each other.  We must do it.

 

Maybe all I want to say. Is what I realized by Pakistan. True beauty relies in recognition. And happiness in belonging. And the path is love.

 

Lots of love,

me

After the Hospital

My dear friends,

Thank you so much for all the emails you sent me.
Things got soooooo much worse after I wrote you but they are finally getting better. Or at least I do believe now that I will be well at some point.
After spending 11 days in hospital I left hospital only to get well worse.
It all started with me not seeing very well. I had had some visual things before so I decided to keep it to myself imagining it to be only temporary. In 3 days I could not see anymore at all.
The world little by little became unexplainable to me. Not only could I really see anything properly but I no longer could read. I could see at first letters separately and eventually  it all seemed like a “matrix” world desconctructing.
With it came a loss of feeling that I belonged to this world, and a total despair.
I slept a lot… could not longer make any sense when i attempted to speak to people.
In my mind came sentences that had mixed words of different languages that I no longer understood very well what they meant. I also could not really understand “who” was thinking those sentences These obviously, aggravated  enormously my angst, making it impossible sometimes for me to understand what people where telling me.
I woke up everyday hoping to be better… but it just did not happened.
There were sometimes that people could understand me… and I also had a feeling I did not want to tell people I were so bad.
Eventually one day, I managed to call a friend and  asked him to take me out… since I had not left my house in a week. Basically rarely ever leaving my bed.
He did. I  was exhausted by the time I went to his house in his car. I attempted to explain him what was happening to me. And he eventually understood it. When I was finally in his house, his mother asked me whether or not I was taking some pills against allergy. I was. She suggested it might be it. She had also had really bad reaction towards these pills.
I cannot explain to you how much relieved I felt that day. It meant it was not me. It meant it was just me being once again poisoned by some medicine.
It took me still more 2 days to be able to start being able to read, and I am yet to be better entirely but I only have 5 more days of cortisone to take more and I finally do believe I will be better again.
I still cant speak nor eat properly… my skin is totally changing like a snake… but I am happy.
This was one of the hardest years in my life, and I do finally feel I am going to be better. After having reached rock bottom
Being sick in Brasil is very relieving. The amount of love and support I get here is incredible.
The syncretism is everywhere. I get prayers of all kinds of religions and when people ask you whether they can pray for you they never ask you to become of that religion. They always simply say ” Do you mind me praying for you. It is always better more prayers.”
It is relieving and I accept and thank them all. I have in my room now all kinds of tradition things.
I always was given a book by the Mozambican  Mia Couto and a week later here giving an interview. I heard it all in admiration…. these celebration of it all as just as alternative possibilities of narratives of the human experience. Mia is originally a biologist but he understands the world in biology but also through poetry..
I heard him understanding finally what it is that is in me that is Brazilian. It is this syncretims. This relieving  feeling of feeling that it all is incoherently fine in these worlds where we mix it all. Neurology and magic. Poetry and love. And how it is simply understood by everybody..
I finally walked these days. I went to hear music at Cidao. And music alleviated me. Having people I do not even know putting my name in their churches relived me to un extent that I am incapable of explain.
The 75 years old masseuse whose parents are japanese came even on a sunday to spend 4 hours with me doing all kinds of things to make me feel better.  Just before leaving she told me she would come back for my birthday to celebrate life.  She explained me that when she decided to live in Japan she understood how Brazilian  she was. We are happy people, we love, and we are flexible.  Just remember this… it does not matter much more…. you just have to be loved and love the world around!”
It was that night that I could again think clearly. It was again that I could read better. It was that evening that I finally understood that it was time for me to stay here. To be from here and accept all these love I  have around me, and be for them when they need.
I guess it was that day that I started to believed that I will be fine,
Love,
Jules