SANDO illness from the inside out

What is a disease from the inside out? Disease are mostly described from a scientific perspective, not from the point of view of the person affected. Therefore the essential aspect of the subjective experience is negated. Bart is my youngest cousin of my Dutch family on my mother’s side. For the past 20 years I had little contact with him, and if I did, we met us only at family celebrations or funerals. I knew that he had studied tropical agriculture, was a lecturer at the university and had two children.It wasn’t clear to me that time which desease he had, but I learned later that he was suffering greatly from having to give up his beloved job. So it seemed to me something very serious. December 2014 I surprisingly received a mail from Bart that he wanted to make a documentary film about his illness, but his role was only the means to an end. „the vision for this film idea came up on a rainy Sunday afternoon.“, wrote Bart, „ this sounds like a buzzword, but it was just like that“. He wanted the outside world to slip into his physical world and feel what it means to live in a chronically ill body. And he asked me and Marcio if we were willing to make this film. His mail touched me very much. Marcio and me discussed until deep into the night. What exactly did he want? And why as a means to an end? So to speak as an object instead of a subjective experience as a human being in his body world? And what kind of desease was this anyway with this appealing name SANDO? We agreed, inspired, full of zest for action and at the same time with a certain feeling of unsecurity. Although Bart is my cousin, we didn’t have much contact in a long time; so the intimacy from my childhood had to be transferred to the here and now. As adults. And if our ideas of a documentary do not meet at all? I told Bart to write down his story of his life without censorship if possible, step by step, what he felt, how he felt and what happened. Because only on the basis of his story we would be able to make this documentary that focused on the desease from the inside out. According to the experience with my first documentary film „Ruben, fragments from exile“ , about a victim of torture i consciously chose an approach that interferes as little as possible with the everyday life and the emotional state oft he person concerned. This meant: little equipment and above all few people on the set. It took 8 months until the first shooting. Time to get to know the three of us as a team, to discuss ideas, questions and also fears. And I began to reaad myself into the subject of rare deseases, I realized that I knew little, very little even. Hadn’t Bart told me that SANDO was a genetic disease? But even if he finally could not explain exactly whether the illness was from his mother’s or father’s side or a rare cruel interplay of two genetic defects? In this case it also could affect me, since his father was my mother’s brother... Could it be that also i have one of these genetic defects in me without knowing about it? I decided at some point to have this examined... because if.. then my children..but first I immersed in the world of the internet. To forget, to repress is sometimes quite helpful. The combination of mitochondrial myopathy and infection of the cerebellum is called SANDO (sensory atactic neuropathy, dysarthria and ophthalmoplegia) Bart managed to explain it somewhat more simply: it is a genetic defect oft he energy production, i.e. the mitochondria in the cells. I kept surfing in the web and realized that I had no idea how many types of rare diseases exist and that new ones constantly being scientifically described. That there were countless structures in the medical field, many committed people, but few medical solutions. There were huge financial problems for the treatment and care of patients, sometimes incredibly high costs for supporting medical and also pharmacological treatment – if there were any. Too little public support is lamented by both experts and affected persons. Because it needs money for a – gladly independent - research. The role of the pharmaceutical industry is also questionable in this area. There is interest in research as far as it provides financial gain. I fiound huge databases such as Orphanet, help groups, countless symposia on specific rare deseases, medical forums that are demanding and difficult to understand for an amateur.. And a great number of You Tube films, mostly with interviews with an affected person and explanations by experts. I threatened to drown facing this abundance of information and reports in the internet. But the three of us didn't want an actual repetition of this kind of documentary although we didn't doubt that they were certainly helpful. We wanted something different, something that us more matched, something more personal, which allowed to immerse in Barts world. SANDO, the illness from the inside out focuses in the personal history and subjective perception of the protagonist affected; not the point of view of the experts. In his essay , which Bart wrote after reading the works of the philosopher Maurice Merleau Ponty , he says: the body speaks. it's about the question of physicality in existence. what does being ill means for personhood? Being ill leads to a rupture of the body and its body schema. It's probably better, says Bart, gto talk about body awareness instead of body schema. The body must repeatedly adapt to the physical changes at an ever-increasing pace. We acquire the body awareness from the beginning of our being. We make body experiences from birth on, or even prenatally. Countless instinctively executed movements have been practiced a thousand times over, finely tuned. In a chronic degenerative disease, the body's awareness must constantly adapt to the changes. "it's going about a process of holding on, but never about accepting such a degenerative disease with an uncertain end. It is not acceptable...it is inconceivable". Bart has chosen the option to hold on, which means: one tries to live with it and constantly adapt to the new symptoms without leaving one's identity to the disease. It is self-explanatory that Bart does not want compassion. He wants that outsiders understand and respect the self-determination. The documentary SANDO raises existential questions, does not give an answer, but shares the thoughts of an affected person who deals profoundly with the topics of existence, body schema and bodily awareness. Bart emphasizes that neither human kind nor human body will be perfect, every human being is confronted in one way or another with affliction diseases and death. Everyone's confrontation and challenge.