Losing my body as a form of expression is dying a little, says dancer who learns to walk again

Inertia was once the biggest fear of dancer and choreographer Marina Abib, 34. “I love the freedom that dance provides. I only need my body and nothing else,” she said in a 2018 interview.

But this year the fear materialized. Legs and arms that used to travel through rhythms and countries knew immobility. The infectious smile fell silent. Marina was diagnosed with seronegative autoimmune encephalitis (see her testimony below), was induced into a coma and is regaining control of her own body with the help of intense treatment.

To cover the costs of the therapy, his friends and family sought support from the Inspirativos platform, which launched a fundraising campaign. According to publicist Marco Antonio Iarussi, creator of the videos promoting the initiative, the goal is to raise at least R$ 360,000, enough for six months of treatment.

What is encephalitis?

Coordinator of the Multiple Sclerosis Center at Hospital Sírio-Libanês, Tarso Adoni explains that encephalitis is inflammation that affects the brain, cerebellum and/or brainstem. The affected region varies depending on the cause of the disease.

Among infectious encephalitis, the cause is often a virus, such as viruses in the herpes family or HIV. Parasites and bacteria such as Treponema pallidum, that causes syphilis, can also cause the disease.

Autoimmune encephalitis, in turn, is triggered by a protective reaction of the organism. For example: the patient may have a tumor with a protein similar to some structure of the central nervous system. In an attempt to fight the tumor, the immune system also attacks this structure, causing an infection.

Lívia Dutra, scientific coordinator of the Brain Institute at Hospital Israelita Albert Einstein, says that the disease was described in 2007. It is estimated that it affects between 7 and 13 people per 100,000 inhabitants worldwide.

In Brazil, the number of cases is still unclear and is being investigated in an initiative that unites the Brazilian Academy of Neurology, Einstein, Grupo Fleury and the University of Vienna.

There is also research in partnership with Stanford University for the genetic mapping of patients and a working group to define treatment guidelines according to the subtypes of the disease.

There is a great chance of recovery, especially when the disease is diagnosed quickly and treatment is started soon, and many patients resume their functions. “The way we see the patient, so debilitated, usually does not reflect the final outcome, after treatment”, concludes the doctor.

“For a few years, red spots appeared on the hands and feet that came and went. Then I began to have double vision sporadically and difficulty walking, a sudden imbalance that then disappeared. This imbalance became more frequent and stronger, and finally , came the difficulty of speech and swallowing.

At first we thought it was an emotional issue and from 2020 until early 2022 I was treated as having conversion syndrome.

The symptoms got worse and became so intense that I was admitted to the ICU, intubated, put on a ventilator and put into a drug coma to get them under control.

The diagnosis was very complicated. Most exams were normal, except for the electroencephalogram. Traditional markers of encephalitis were negative, but the clinical picture added to the response to treatment confirmed the diagnosis. This is called seronegative autoimmune encephalitis.

For the neurologist Lécio Figueira Pinto, it was a difficult decision because the clinical picture was very typical, but the exams did not help. After discussing the case with another neurologist who also agreed with the diagnosis, treatment was started after my condition worsened in the ICU and there was a clear response within a few days.

With the treatment, I gradually recovered.

From the beginning, when I was in the hospital or clinic, the treatment takes up my whole day. I’m relearning everything.

Today, this continues, but luckily I’m home. A house I rented in São Paulo because my father lives in Ilhabela and my mother lives in Bragança Paulista. As all the doctors are in São Paulo, the family had to reorganize to rent a house here so that I could be close to the doctors and professionals who are doing my rehabilitation.

Being at home was really nice and made a big difference. It is a place that has my contours, which is not cold and full of protocols like the hospital and clinic where I stayed. It’s a huge relief!

Both the hospital and the clinic were very good and necessary, but the lack of privacy, autonomy and choice was suffocating for me. Being at home is already a big step towards treatment and, in addition to the professionals involved, she is able to welcome her family and friends, which makes all the difference. That’s why I made a point of starting at that point.

I am accompanied by caregivers 24 hours a day, I do speech therapy, physiotherapy, dance, therapy, biweekly infusions of immunoglobulin, in addition to appointments with a psychiatrist and recurring appointments with my neurologist. At the moment, I am in a transition phase due to weaning from the probe, which may change this situation a little.

I already removed the tracheostomy; I spoke again, but with some difficulty; and I manage to eat pasty foods and already some solid ones. I walk with a brace and a walker and it’s almost inevitable not to dance halfway through. My dancing has always had a connection with the floor, so I went back to dancing on the floor, with my legs that are slowly starting to respond.

The hardest part is not having autonomy and privacy. In the last decade, I lived and built my career between Brazil and Europe, so still not being able to climb a ladder, eat whatever is in front of me, carry my suitcase on my back and do things by myself is very difficult. I’ve had my body as a form of expression for as long as I can remember, losing it is dying a little.

The expectation with the treatment is that I go back to my normal life, as before, or even better with the lessons that pain brings.

After all, for me, dance is blood, it’s life, it’s sea, it’s street, it’s ‘everything I don’t invent is fake’, borrowed from Manoel de Barros.”