To See or Not to See. Inez De Florio-Hansen

      Of course, I also thought about the failure of the intervention, but I did not really fear it. The prudent behavior of the Russian surgeon had shown me that the ophthalmologists who wanted to test the new procedure did not do so without consideration, if only to avoid setting negative precedents right at the beginning. Whether or not I would have thought of a corresponding operation without the intervention of my husband, I do not know. Probably I would not have found out about the new procedures so early. But my husband was certainly right: Why shouldn’t I expand my four senses to include the visual sense? Thus, I decided to try vision if there was a promising possibility.

      The most urgent question I had to ask myself in this context was rather: What would it be like if I suddenly saw? I could not get an idea of it. I would have liked to exchange views with other people concerned, but there was nobody in my environment who could have told me anything about it. Even my eye doctor, whom I visited now and then, remained silent. Although he welcomed my intention to undergo surgery, he had no first-hand experience. In his practice there was no case comparable to mine. Therefore, I questioned my husband, who had informed himself in detail.

      “I find it rather difficult to suddenly be able to see when you don’t know what seeing is.”

      My husband did not play down the difficulties, but said:

      “Yes, it’s certainly one of the greater challenges. I have read a lot about it. You need a strong will and quite a lot of perseverance, especially in the beginning. You really have to learn how to see.”

      Not satisfied I dug deeper:

      “And what if it doesn’t work? Are there any patients for whom seeing was not an enrichment, who failed to learn to see?”

      “Yes, but unfortunately, there is a lack of solid, recent evidence. It is reported that many people who underwent cataract therapy have not been able to cope with seeing. This may have been partly due to outdated surgical procedures.”

      “And what happened to them? Have they gone blind again?”

      “No, not that, at least as far as I know. But a relatively large number committed suicide.”

      “Oh dear,” I exclaimed in dismay.

      But my husband knew how to calm me down.

      “With all of this, you must remember that they were often reluctant for, or at least indifferent to, the operation. And they were not aware that one must learn to see. They made no effort whatsoever. Moreover, some of them suffered from serious illnesses even before the operation. I am convinced that if you don’t give in to the illusion from the beginning that seeing comes naturally, you will succeed. You have to do something about it.”

      “If I understood you correctly, it’s definitely very hard to conquer the visual world.”

      “Aptly put! But I will assist you in conquest when the time comes.”

      You might ask now: Don’t you just have to open your eyes and see? Or is it a kind of Sleeping Beauty who is kissed awake by a prince? Since Sleeping Beauty is known to have seen the world until she was 15, it was only a kind of time travel after that the well-known fairytale figure had to find the connection to the here and now. This is not an easy task either, but not to be compared with the effort one has to make when, blind from birth, starts seeing in adulthood.

      My husband had further explanations at the ready:

      “There is a big difference between congenital and acquired visual impairment. It is quite different if you have seen more or less well all your life and then gradually lose your sight as you get older, due to cataracts or other age-related eye diseases.”

      “Does this mean that after cataract surgery, such patients do not need to learn to see because they return to a previous positive state?”

      “Exactly that.”

      After a few years, doctors in Germany also performed comparable operations, usually with good to very good success. A colleague had heard about a clinic in the Rhineland through his daughter—she studied eye medicine—whose chief physician had already successfully operated on several severely visually impaired and even blind patients. In the meantime, he was known far beyond the German-speaking countries. We went to see him and he approved the intervention. Although I was already in my late forties, the operation, which I will describe in more detail later, brought the desired success, also because the retina of both eyes was largely intact.

      After the successful surgery, friends and acquaintances congratulated me without exception. “This must be like winning the lottery for you” or: “Now your life really begins.” They simply could not imagine how difficult it is, to learn how to see if one has been blind or at least severely visually impaired since birth or early childhood. They had no idea of the effort required to process optical impressions in a reasonable and meaningful way. The main reason for the difficulties is that people who were born blind or severely visually impaired cannot rely on experiences that help sighted people process incoming visual impressions. The moment when the nurses removed the bandages from my eyes was only the first stage on my arduous journey from darkness to light.

      Years later, a friend gave me a book entitled An Anthropologist on Mars.17 The author is the late British neurologist Oliver Sacks, who describes complex clinical pictures in his numerous popular science books with the intention of not losing sight of the people concerned and of recognizing the individual circumstances behind each illness. He accepts long journeys in order to visit the patients in their home environment and to interact with them privately. But Sacks does not go beyond the role of the benevolent observer. After all, he is a doctor and therefore primarily interested in clinical pictures.

      In the mid-1990s, Sacks reported that in the last few centuries up to the 1980s, there were only about a dozen people who were freed from their blindness by a successful operation at an advanced age, or better: who came to see. Thus, in one of the seven episodes of the aforementioned book, he describes the case of Virgil, who was successfully operated on in the same year as myself, that is in 1991.18 Although Virgil and I were about the same age at the time of the surgery, our stories were very different.

      One reason for this is the initial situation: Virgil was not only severely visually impaired, but was considered to be completely blind. In addition, he had numerous serious pre-existing medical conditions. Above all, however, he was indifferent, if not hostile, to the operation that his fiancée had urged him to undergo. Virgil did practice, for example with toys, to be able to classify objects better. But one has to deal with the same perceptions in reality over and over again until the brain can interpret the visual input accurately and assign meaning to it. It seems as if learning by doing had been an enormous psychological burden for Virgil. I also found it difficult to repeat the same processes—with slight variations—several times, but it was manageable, especially when I could see progress. Above all, however, I was aware that it was a matter of building a new identity if you did not want to become a blind person who could see. Ultimately, the psychological disposition is decisive.19

      Sacks is primarily interested in medical and psychological facts; he visits Virgil in his hometown together with a colleague in order to question him and perform a series of tests. In my opinion, the conclusions he draws from the cases presented in the literature are too negative. Sacks is always talking about the patients’ problems with their newly acquired sense of sight. It is possible that only the problematic cases were recorded, because Alberto Valvo (1972) proves that there were also positive developments: “Once our patients have acquired visual patterns, and can work with them autonomously, they seem to experience great joy in visual learning … a renaissance of personality … They start thinking about wholly new areas of experience.”20

      How I gradually succeeded in bringing the sense of sight in line with other sensory experiences is explained in the following with the help of numerous details, especially those that are particularly relevant for an adequate assessment of eyesight. As far as I know, I am the first to tell you about these strenuous learning processes, including the setbacks, but also the small and large successes, at first hand. Although there are numerous publications dealing with blindness in literature and visual