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.