Life with Usher Syndrome (part 2 – last one)

Second part of Afroditi’s interview

Fly

Fani: Did you ever visit a psychologist? If yes did you speak with him/her about  Usher Syndrome or other stuff?

Afroditi: The moment that I really felt I needed to visit a psychologist was during my revalidation here in the Netherlands. Of course,  in Greece it was impossible to even consider this since it was a big taboo. I remember that I was taking some private courses in mathematics at home and at same point the professor told me that I should go and visit a psychologist. I don’t remember what I told him but he was shocked! (She is laughing). I was basically in depression. I was definitely depressed as a a teenager.

F: I see. So during your adolescence it was suggested to you to see a psychologist, you believe that you were depressed but however you didn’t visit a psychologist. When did you feel that it would be nice to have a psychologist to speak to?

A: I admitted that (to myself) when I was already 6 months in my revalidation here (the Netherlands). I started it in July and 6 months later in January my relationship with my Dutch boyfriend ended. The way we broke up was not good since he told me that he would abandon me if I became blind. This is an experience that can stigmatize anyone – especially a person with a disability. During that period I was already under pressure with the revalidation, learning Dutch, trying to understand what is happening to me  how the disability affects my life and how can I adjust my everyday life. The break-up came in the middle of all these and it “hit” me hard and then I got angry all over again! It was that moment that I realized that there is a lot of anger accumulated inside me. So I thought that since I was in this revalidation it would be smart to see a psychologist. Unfortunately, the psychologist that conducted the initial psychological assessment, which was required before starting the revalidation, didn’t think that I needed any psychological support. She was really experienced and I believed she could help me but back then I knew how to fool others that everything is fine and that I don’t have any problem.

F: Do you want to tell me in detail what happened with this psychologist? What did you tell her? How did she decide that you don’t need any help?

A: Before someone starts this revalidation, this person has to get through an procedure that lasts 4 days, during which some –one of them is a psychologist – evaluate whether this possible participant is ready to follow the revalidation. These specialists want to be sure that every participant will benefit from the revalidation and they also want to feel that they can offer something to each one of them. In my case the psychologist wrote a report where she claimed that I can participate in the revalidation but considered that I don’t need any psychological support.

F: Yes, but you needed to see a psychologist 6 months later.

A: Yes, I was the one that asked for a psychologist after 6 months. I told them: “I want to see a specialist. I don’t feel well. I am under pressure. I feel anger, sadness and whatever and I think it’s time to deal with my emotions with the support of a psychologist”. The psychologist that wrote the first report had retired and a young girl came as replacement with no experience. She had just finished her University studies. I saw her eight times in total but the whole experience was like talking to a young friend without much  experience. The only useful thing that she told me was to start writing. She suggested that I should write every time that I feel anger and use writing as an outlet of my anger. During that time, a good friend of mine visited me and she came to one of the psychologist sessions with me. My friend was allowed to join me in every activity, in every appointment with the specialists and she “walked with me the whole day” as we use to say. So she came to the psychological session with me and she ended up diagnosing more than the psychologist! (We are laughing!). My friend is talented, she is a kind of “psychologist” you know, she also knew me quite well so her diagnosis was better than the psychologist’s. I therefore figured out that sessions with this psychologist was kind waste of time. Moreover, it was difficult talking to her as she didn’t want our sessions to be done in English. She had a difficulty speaking English.

F: So your sessions were in Dutch?

A: During that period I was not good in Dutch.

F: Well in which language you were communicating with her then? (We are laughing).

A: We were talking mainly in English. I spoke English and hoped that she understood most of what I was saying (She is smiling). Clearly a messy situation! Anyway. Last summer I experienced a series of sad events while I was in Greece and I felt my worst depression ever. So I said: “That´s enough! I really need to find someone (psychologist)”. Fortunately I did find a psychologist and I started communicating with her via skype. She has helped me a lot to realize many things regarding how I function. A bit later I asked from the organization where I did my revalidation to  recommend a psychologist here in Rotterdam. I waited 6 months for them to respond, so when they contacted me I told them: “Forget it, I am going to jump from a bridge” (She is laughing).

F: Did you really tell them that?

A: Of course,  they obviously did not understand a thing. I know that organizations do everything really slowly and I wanted to make them realize that sometimes someone may contact them because one really needs them. Not everyone can express their needs or maybe someone feels too proud to ask for help or if one will express that need, he/she may totally collapse. Organizations should call people back and talk to them or have a first appointment with them in order to evaluate the emergency of the situation.

F: Right. First appointment should be immediate, not 7 months later.

F: That’s why I said “Goodbye” to them! (We are laughing). Can you imagine someone that you need calling you after six months to see you after one month (7 months in total)? And what’s more they were annoyed because I told them that I prefer to have sessions in English.

F: Annoyed, huh? They asked Dutch, right?

A: I had the same problem recently when I asked from a similar organization a psychologist with whom I would be able to speak in English. This didn’t go well either.

F: What exactly does this organization do?

A: They help people with visual impairment.

F: And which is their basic goal/purpose? Do they provide psychological support to people with visual impairment?

A: They provide various services. You can talk to a social worker, have some meetings to start realizing some things regarding your visual impairment, ask help from someone to request assistance from the Dutch state or other services, have coaching sessions regarding any work-related issue.

F: So it is an organization which helps people with disabilities to adjust to the daily Dutch reality.

(Note: At this point we stopped our interview for a while since  I  received an enjoyable phone call. So we had the chance to have a little break).

F: Let’s continue, should we? Do you think that because of the syndrome you or anyone else will need some psychological support at some point? Do you believe that the way you see the syndrome could be improved? If yes, can a psychologist help you to that? And also I want you to tell me what you expect from now on when visiting a psychologist?

A: The truth is that one may expect miracles. A realistic expectation is to realize how you deal with the world, how you think, how do you function. Especially regarding the syndrome one should understand if he/she considers himself/herself as a victim. I have realized that there is a general impression that people with disabilities grow up a little later. In other words they don’t have the maturity that their peers do. This is greatly due to parents protecting these children, they don’t want to let them go out much, to experience this world. This can possibly delay the maturity of people with disabilities. I think that psychologists can help people with disabilities accept some things more quickly, first of all the disability itself. Then someone should understand how he/she thinks and functions as human. For example, my characteristic has always been anger. At specific times, I couldn’t listen to anyone because of the anger I was feeling. So I tried to understand if I am angry with everyone, whether everyone is responsible for what happened to me, which of my emotions are realistic, how do I want to live. Psychologists help you make some choices.

F: I suppose that an experienced and well-educated psychologist could help you with anger management sessions. In your case you could find ways to express or control your anger. Okay, the young psychologist told you to write, but certainly there are many different ways to express or let out your anger.

A: I think that my main issue was anger. I remember when I was a kid and later a teenager I had quite intense burst outs . In general I could talk abruptly to people without even realizing it or maybe I would give an aggressive look to someone without having something personal against that specific person. There is just some anger accumulated inside me and it comes out suddenly without me controlling it. Of course it has decreased in the last years, I am more calm nowadays, but I think I have never dealt   directly with it. I never understood why I have this  anger, where it comes from. When you don’t understand something you obviously feel frustrated but there are certainly many people who don’t want to understand, they have blocked everything. That’s why a psychologist should have experience and empathy to understand this “blocking” and to be able to help. What I have seen from several psychologists is that quite a few of them lack empathy. Maybe it is what you say, they are taught to not get too much involved or not concern themselves too much, however, I believe it is a fine line and one can easily lose his/her empathy. And if you don’t have empathy, how can you be a psychologist?

F: They give me advices for the exact opposite. They keep telling me that I should not get too much involved and stop myself of getting so much inside others’ problems. What do you think? Is it a good advice?

A: Yes, it is. Empathy is necessary to feel and understand others but someone that is not careful can easily feel  that a problem of another person is his/hers. I don’t know, maybe with some technique a psychologist could conserve empathy during sessions but after the end of them when he/she will go home, he/she should “forget” everything. He/she should “turn off”.

F: I don’t know if there is a specific technique and if there is a university that teaches psychologists what is the right amount of empathy to have. I think that an intelligent psychologist should put a limit to himself/herself through self-observation. This limit should not be crossed. Of course it is difficult and that is why there are two clear groups of psychologists: those that connect with people and feel sad or sorry for them so affect themselves and on the other hand you see many health specialists (doctors and nurses are included) who lack of empathy but they need some kind of sensitivity to keep doing their work well. The specialists of the second category claim that they were not behaving like this in the past and that they changed after some years that they have been doing this work. Of course here comes up a big question: Can someone provide help to others when he/she has become so cruel?

A: Balance could also be kept in other ways. Doctors could announce in a scientific way what they have to say and then they can tell to patients: “A psychologist is expecting you next door, please, this way”. In this way everyone can do their jobs. Doctors do their part and psychologists do theirs too.

F: It is possible for doctors and psychologists to cooperate the way that you describe.

A: Doctors don’t have to understand a lot around psychology. The only thing they should realize is that an announcement of a serious diagnosis can be a shock to a patient. Another patient can be more relaxed when hearing the diagnosis.  Another patient might not be able to realize what is happening, because probably he/she won´t understand anything from the initial diagnosis.

F: It is the same with doctors. Some specialists don’t realize what they say or how they say it or they don’t believe that some patients may need psychological support at some point.

A: This is true because as I told you I was not able to understand myself what it means to have Usher Syndrome, what happens when you are diagnosed with it. Usher Syndrome only gets worse, it doesn’t stop, so what I see in myself and others with Usher Syndrome is that every time it gets worse we feel shocked, but we just learn to get over it quicker. Imagine though,  if it is difficult for us who have to live with it, how difficult can be for those who have no idea, who are probably healthy and therefore have never had to deal with such a serious health problem, and they cannot possibly imagine what it is like. You can try explaining them but it is not always easy – I can see it when they ask me or I decide that I want to mention it. I decide to tell to people that I recently met that I have this specific disability. I then realize that some people want to hear about it and others not.

F: I understand.

A: To conclude: The issue of total understanding the syndrome doesn’t end. It is really logical that some doctors don’t understand it or are not able to deal with it. Of course it would be much better if doctors and caregivers had followed some extra psychology courses during their studies.

F: In order to learn how to announce a serious diagnosis?

A: In order to learn how to type in with more than two fingers! (She is laughing). To learn blind typing.

F: So two things? To learn typing in with more than two fingers and learn how to announce a serious diagnosis?

A: Yes. And if they cannot find a way to say it themselves, there should always be someone available around who knows and can take care of serious announcements.

F: (I am laughing) Let’s suggest to clinic managers to hire people that can announce serious diagnoses in a kind way, huh?

A: Since a doctor has only 10 minutes to see someone, he/she should announce to a patient what is going on in a scientific way. Then, patients should have the option to see a psychologist inside the clinic/organization. A psychologist should read patients’ records and discuss with them. I guess a psychologist should be able – if he/she has some empathy – to understand whether a patient is shocked or not and whether he/she has realized what exactly the diagnosis is. Additionally, a psychologist could understand if a normal reaction regarding the bad news will come later and how intense this reaction will be.

F: First of all, just the presence of a specialist who is willing to talk to a patient is a great thing. Otherwise, a patient would leave a hospital but the questions in his/her head will remain unanswered since there is no specialist to talk with about the diagnosis he/she received. Moreover, if we say to a patient who is diagnosed with a serious syndrome/disease a phrase like “Go home”, we cannot be sure that a shocked patient will be able to go home.

A: Of course. One that has just received a serious diagnosis  could possibly try to end his/her life. And it is the simplest thing to do, right? It’s the first thing that he/she can think of.

F: What do various specialists think then? That it’s better this way and that they have less patients?

A: I must admit I thought about that  too. I remember myself (back then in London) when getting back home and trying to realize what second diagnosis was all about. What I knew back then was that someone with Usher Syndrome will progressively end up blind and deaf. The first thought that I had was: If I  will get blind and deaf what the hell would I be able to do in my life? How will I live? In which way? Will I sit in a corner for the rest of my life without experiencing anything? So this was what was wrong with the diagnoses I had received so far. No one mentioned the possibilities I had. No one told me that I could read with my hands, that I can communicate with my hands. Later I discovered so many things by myself! If I had not discovered all these things, if I would have not found ways to continue my life, everything inside me would become black and I would not be alive now. Do you know what is the worse in a situation like this? The fact that I would not have at all considered the next 15 years that I had ahead of me before the symptoms have deteriorated a lot. Instead of thinking “I still have 15 years ahead, I should live my life to the fullest!”, I was only thinking of the end.

F: What does the end look like?

A: Black. Of course by the word “end” I am not referring to death. The end for me is the moment that I do not hear or see anything.

F: I see. You have it in your mind like being in hell. So I won’t ask you about the thoughts that you may have done about how is life after the “end” because I guess only the fantasy of the end is too unpleasant or painful so you don’t want to go further. However, have you realized what makes you feel more panic? What is the most difficult thing you believe that you might experience in the future?

A: Everything. My way of life seems difficult. I will not be able to cook, to dance – I already experience difficulties with that due to the deterioration in my vision. I feel that I won’t be able to do anything. This is the point that someone is needed to come and give you the options. For me the best scenario is to find and contact a group who experiences the same situation with you. A person that has been where you are, can understand you better than anyone else and a conversation with him/her will help you a lot. Of course I do know that not everyone experiences it in the same way. But usually people who share the same problem can understand each other much better.

F: For sure people who are diagnosed with the same syndrome have thought what you have thought.

A: Yes. Of course by discussing with various people you can understand the cultural differences and the different ways that everyone deals with the problem.  I did learn a lot about me and the disability I have during my revalidation. During the revalidation they showed me a new language with which you “speak” with your hands. Someone who cannot hear or see can communicate in this way. This is the good result of all those revalidations and discussions with people that experience similar situations with you. You realize that despite the fact that is not the ideal way of living, it is a way of life and there are solutions and more are being developed. Let’s stay positive and avoid thinking of the end or all the negative elements.

Fear

F: Well if you are asking me it is completely normal a person who is diagnosed with Usher Syndrome to think how life would be without it or whether he/she deserves living with this syndrome. In other words, no matter how positive someone is, strange thoughts always show up and the only thing that one can do is to control them in order to continue living normally.

A: Of course that applies to all people, not only to people with disabilities. All of us often start phrases with the word “if” as a first word, we look our possibilities and what the different scenarios are. However, in a case like mine a psychologist should organize a patient’s thoughts, help rejecting negative thoughts more easily and not hang on to them. At some point one simply understands that there is no point to keep having depressive thoughts. At the end of the day you know what? If someone comes to me now and tells me that I will die in two days in a car accident I will feel various emotions but mostly I will feel unbelievably stupid because I was worried about what will happen 15 years later.

F: These examples are really useful even for “healthy” people. All of us without having a serious health problem we feel stressed not for the near future but for the really far one. As you said really well all of us could possibly die tomorrow in a car accident or another situation.

A: Here I should mention that I was hit by a car a few years ago when I lived in London.

F: What happened? Didn’t you see it? Was the driver drunk?

A: (She is laughing). No, I didn’t see the car. Don’t think anything weird. I might have considered suicide but honestly that was an accident! Imagine that I checked the street before but I didn’t see the car coming. When someone doesn’t have peripheral vision, it is only normal not being able to see everything. Fortunately, I wasn’t seriously hit but I was really shocked. The positive thing from all these is that when I visited a couple of eye specialists here (the Netherlands) they suggested that I start using the cane. In England no one told me that.

F: Afroditi, we have said a lot about the past and your different experiences. I think we should talk about the present now. Would you like to tell me how do you experience your every-day life and what are your current activities?

A: (She is laughing). I cannot say that I am in the best phase of my life. I am looking for a job but first of all I am trying to figure out what I really want to do in my life (Note: Until the publication of this interview Afroditi had found a job). I have worked as assistant accountant but I now understand that full-time job in accounting and numbers don’t help my eyes at all. I think I harm myself more with this profession. So I try to figure out what my alternative professional options are based on my studies. I am  trying to find a similar or a part-time job. And here starts the difficult part regarding employment in the Netherlands! It is difficult for me to find a part-time job, while I have the disability and these specific studies and work experience. I am not Dutch so I don’t have the same rights that a Dutch person with disability has. I cannot apply for vacancies specific for people with disabilities, I cannot enjoy the same benefits, I cannot receive help from specialized agencies to find a job.

F: If you go to these services, won’t they accept you?

A: Since I am not Dutch, these services won’t receive state money to help me. So I should pay them myself and it costs a lot. I don’t have a personal opinion but friends with disabilities told me that in the end they are not so helpful. The thing is that my friends are Dutch so they have been in this system since they were younger. Some already have their jobs and after the end of the revalidation we followed together, they returned to their work environment with less hours or similar working subject with the previous one. At least those with a permanent contract were able to remain in their company. Some others magically lost their jobs! (She is smiling). Many times I wonder whether it is better or worse that I left Greece. It seems really difficult to get into the system here.

F: Do you know if you go back to Greece what your rights would be? What does the Greek state provide to people with disabilities like you?

A: In general I have no idea! I guess that I have right to get  disability pension, even if it is the lowest level of it.

F: So in Greece you may receive a disability pension. Any thoughts to return back?

A: I think that in Greece people with disabilities should be supported by at least one other person – a partner possibly, someone in the family or in the close social environment – in order to live decently. In the Netherlands and in England this is not necessary because there are organizations to help one live independently. In this way people with disabilities can be independent with a little help from the state. Unfortunately in Greece everything should be provided by families and friends.

F: So you live here alone and you feel more independent here than in Greece because of the various services provides. However, if you are not of a dual nationality what can you expect for example from the Dutch or the English state? I mean in Greece you will receive a disability pension, which might be low income but is safe. What makes you feel more safe here? Is it the way everything is organized? The infrastructure?

A: Well I will once again consider the worst case scenario. I think that if I completely lose my vision and hearing, it would be better if I remain here (in the Netherlands). I believe that in Greece there is neither the proper infrastructure or the social services that can dynamically support a person with a serious disability.

F: Ok, so you feel more safe to stay here if your vision and hearing gets worse.

A: Well basically I believe that I, as a person that has a disability, have more possibilities to find a job here or in England than in Greece.

F: You feel that if your health gets worse the system here will support you, right? I mean what do you expect to happen here that won’t happen in other countries like Greece? If you are not sure you can just tell me what you possibly expect.

A: The truth is that you can never know what will happen. We make plans and life can change it all in just one moment. I will always have the dilemma to go back to Greece or to remain abroad. I left Greece back in 2001 so basically I haven’t experienced my disability in Greece. Before I left Greece I didn’t have that obvious symptoms of the syndrome. In England I started experiencing what exactly is Usher Syndrome is and it was later when I came in the Netherlands that I “officially” had a disability.

F: So you think that you learned to live with the disability in the Netherlands.

A: Yes. So I don’t know how I could possibly live somewhere else like Greece or even England.

F: So you find even England risky, huh?

A: For me everything is risky. The good thing with England is that I lived many years there, they have a very good customer service system, it’s not like here! (She is laughing). I think customer service it’s a matter of culture. In England employees are so kind, customers have rights – of course these rights should be rational. Here employees believe that they are “equal” to the customers, they are not obliged to serve them and they don’t owe them anything.

F: How different is your everyday life compared to your daily routine 10 or 15 years ago?

A: A lot.

F: Have you ever felt that you took great steps in your life? Like that you outdid yourself in some occasions?

A: I felt like that regarding some facts but for other facts I didn’t. I am more mature now, I know myself better. What I am now wondering is where has all this energy that I had in London gone?! I was working, I was going out, I was having dancing lessons. I was busy with so many activities! Now my daily routine makes me tired. Well of course I should mention that in discussions with people in my age I realize that I am older now, as all my other friends too (She is laughing). We are not 20 anymore. So it’s not only me. All my friends tell me that they get tired more easily, they find driving at night more difficult now, they don’t go out so much. No one keeps doing a student life. So I guess I should not forget that I am getting old! (She is laughing).

F: Right, normal procedures. You are experiencing life changes of ‘30s.

A: Yes. However four years ago that I left London to move here, I was still working there full-time. I don’t think I was happy. I was always under pressure, it was like an employment depression that lasted for two years. I was feeling like a robot, I was on auto-pilot. By experiencing situations like this, I realized that what I cannot control it, I just block it. I raise a “wall” and I let it fall little by little. What I was saying before? Oh yes. Four years ago I wasn’t going out so much, but I was working full-time. Then I worked here for 6 months but the working conditions were not ideal at all. I didn’t manage some situations in a good way and I felt that some people didn’t treat me well. After 6 months I was close to a burnout. It was a full time job, so I had to work for 40 hours per week plus doing overtime. That was the period I realized that I cannot go on like this. I was told by specialists during my revalidation. They kept telling me that I should realize that I don’t have the energy that I used to have and I should therefore work less hours. My life calls for balance in every aspect of it. I can not be only  working. I should have enough energy for some hobbies and for going out; I should have everything balanced.

F: Is there anything that you want to do and you don’t do it because of the syndrome?

A: Yes. (She is laughing). Move to Crete.

F: So you would have moved  there by now if you could, huh? Who is in Crete?

A: I have family in Crete but that’s not the reason I want to move there. I like the culture. I am Cretan. I wanted to live there since I was a kid. When I got older I realized that life is not so simple and romantic as I had imagined as a kid. However, I have lived my whole life in big crowed cities and I feel the need to live my future life in a quieter place. This was also one of the reasons why I actually moved here. Of course,  I do always think of and love Crete. I love the culture, the music, the decent food, the dances of this island. I would love to have a house by the sea. It would be awesome to get back home from work and be able   to go for a swim. I miss this a lot.

F: In which place of Crete you would like to live?

A: Well I guess I prefer Chania (She is laughing). I find it crazy that I am discussing it with you right now and that I  even still see it as a possibility! Wow!

F: Well I guess there is no harm to have it back in your head, right? Dreams are for free! So allow your romantic brain to tell me under which circumstances a scenario like that could be possible?

A: That’s why I think it is a romantic scenario. I find it too difficult to realize.

F: Which factors do make it difficult?

A: The lack of social support and services in Greece makes it really difficult. Moreover, I have never lived permanently in Chania, I don’t know exactly how life is there. I will definitely need to keep using my cane as it’s like my hand’s extension by now! No matter if I forget about it sometimes (she is smiling) it should be in my hand.

Cane

F: I see.

A: So, I  think of Crete and I am concerned. Then I think of my life here. I have a place to stay, several shops and supermarket in the neighborhood. Well of course you can never compare the quality of food that I buy here… that’s an important issue for sure. Apart from that, the hospital is nearby, there are some social services available. In Crete if you live away from the city, you will need someone to transfer you to the hospital.

F: So here you feel that you can go to a hospital by yourself.

A: Yes, by the tram I would be there in 5 minutes.

F: Do you think that transportation in Crete is not good?

A: I am not sure about that. But for sure I would need more than 5 minutes to get there! If I live close to the beach I would need even more time! (She is laughing). Chania is not a big city but for example when me and my family visited it we were around 40 minutes from the closest hospital. There was a medical center close to where we lived.

F: For serious incidents there is a 99% chance that the medical center will send people to the hospital anyway.

A: Well if you are able to get there fast enough! (She is laughing). So to sum up, no decision is easy. I keep thinking what is smarter to do in my given situation and how do I want to live my life here and now, since things could be completely different in 15 years’ time.

F: I will tell you once more that even healthy people without disabilities torture themselves with thoughts like these.

A: Yes, I know. And I say once again that there is no ideal solution. There is lack of social services in Greece but also here they have started cutting allowances, grants of health organizations and social insurance. In addition, there are always games that are played in every country’s health system. For example, you need some health devices or something, your health insurance is going to pay for them 3 times more their actual price you can see in the internet. In this way health insurances consume so much money when there is no need to and then we have to pay more for our health insurances because otherwise they will run out of money. More or less these situations exist in all health systems. The bad thing in Greece is that we have a lot of bureaucracy. Not to say that there is no bureaucracy here in the Netherlands but at least here you can do a lot more online. In Greece this is just starting up now.

F: What do you think that is missing from your life and what you want for the next years?

A: I want balance.

F: Internal balance?

A: Well I think that my internal balance is in a good point. I need more balance regarding my work situation. I would like to earn money  by doing something that I really love. It is very important for people with disabilities to do jobs they love. We consume a lot of energy to get through the day, at least let’s do something that give us some energy. Additionally, I would like to find balance between my job and my hobbies. I don’t want to be stressed financially, so that I can enjoy other activities.

F: I understand.

A: Regarding the possibility of a future life partner and a family I am not sure yet. I always wanted to create a family, to get married and have kids. But I do have my doubts by now.

F: Why?

A: Well it is not the same knowing in my twenties that I will become deafblind in my fifties  and knowing in my forties. Well that basically answers your question “What would you have done differently if you knew earlier about the Usher Syndrome?”.

F: If you knew it when you were 25, would you have tried to have a child earlier?

A: I believe that yes, I might have.

F: Do you know what is the stupid and unfair fact here? When you were 26 and the doctor told you that you will get blind in five years, she gave you such a little time. I mean if she was right you would only have had five years left.

A: Yes but back then things were different; I was in love; and when I moved here, me and my partner had some tests done.

F: Did they find anything specific to him?

A: They didn’t. They could not possibly have because they did not find anything in me.

F: I see. So no matter what the tests were saying you would have had a baby with him since you were happy.

A: Yes, because I thought that I had the ideal relationship. I was up in my pink cloud.

F: Well no matter how this relationship would have  evolved by now, you would now have a child.

A: Nowadays, I am just thankful that I didn’t have a child with this person.

F: Apart from the syndrome itself, are there any other factors that make you doubt having your own family? Maybe some practical or psychological reasons?

A: First of all, in order to be able just to think about it I need a partner who will support the whole idea and the making of it at 100%. He should want it a lot and no matter what will happen to our relationship, he should be able to remain a good parent for our child. Regarding my role, I know that I won’t be able to provide all the stuff that other parents do, but I would be able to provide some other. I have balanced this thought in my mind. But let’s be honest: the whole child issue would be practically difficult. It is difficult for me to raise a child by myself, to accompany it to school and back and to other activities. I basically already feel sorry for the kid. As a Greek woman, I was raised with the perception that I had to get married and have children. I was taught that this is my purpose in life. I had accepted it and obviously that is what I was after. However, I now think that it is far too selfish to have a child just to say that I ticked this box too. Of course there are a lot of people who tell me that I should just have a child with a random partner or to go to a sperm bank and start a procedure to have a child.

F: Well most of the people – and especially Greeks – will tell you these stuff. I am not expecting something different. Most of the people want to reproduce their DNA and I don’t really know why. However in the Greek minds there is something more: If someone with a disability has a biological or adopted healthy child, one thinks that he/she will receive help by his/her child when things won’t be well in the future. I know a lot of people – and not necessarily sick people – that give birth to children by having these kind of thoughts.

A: I cannot accept this thought. And that is why I say that I find it selfish of me to have a child. I can tell you that once I thought to adopt too. But even if I give birth to a child or adopt one I am sure for one thing: I should be balanced, I should be financially stable and sure that I can provide some basic things to a child. Through a child one can evolve as a person – this is the selfish part which I accept – but also the child needs to get the right weapons to be able to be independent later in life. My child should be able to fight for his/her own life, not for my life. It’s not his/her job to take care of me, protect me, help me or keep me company when I am older. You see, staying here would have been another good reason as I would be independent and I would not “trap” my kid with guilt to make him/her stay with me because I have a disability. I think that is the biggest trap for people with a disability: they consider themselves as victims. They believe that everyone owes them something and everyone should take care of them because they are the poor guys with the serious problems.

F: You say that many people with disabilities use their health problems to receive better treatment.

A: Of course.

F: Do they do it more in their personal or in their social relationships?

A: They can do it in every chance. Anytime they consider that they can do that. I don’t think there is much room to avoid that.

F: Where did you use your disability? To succeed what?

A: If I play the victim? Yes, I sometimes still do. This does not only derive from the syndrome but also from my culture (She is laughing). I still feel at times that the world owes me, that they should help me, sometimes I get too angry and I feel that no one wants to help me. For example I was pissed off the first days that I started using my cane because many people were not paying attention, playing with their mobile while walking and naturally stumbling on my cane. So at some point I thought that I will make them notice me! (She is laughing). I started slightly hitting them with my walking stick. Some were annoyed, others would stop playing with their mobile phones.

F: And no one can say something to a person with a disability!

A: Right. So I use my disability to make some people respect me while I walk, but for sure I don’t want to bother them for no reason. I am protecting myself. I prefer them stumbling on my cane that hitting me. I have never used my disability in other cases but it does happen that some nice people offer help when they see my cane.

F: Where is it easier to walk with a cane? In the Netherlands or in Greece?

A: Definitely in the Netherlands. In Greece I cannot use it anywhere. In Athens I used it only when I took the metro. And that is how I noticed some cultural differences between the people that I meet randomly here and those that I see in Greece. Greeks are not discrete at all. They stare pretty intensively. When the Dutch look, they do it in a more discrete way. English people also look quite intensively. However, in Greece is the worst, people stare as if they see an alien. And it is only reasonable, how many people do you see walking around with the cane? All these years I have only seen one lady with a cane in Greece.

F: So Greeks are not used to these kind of phenomena and certainly they feel uncomfortable with them.

A: Well people feel uncomfortable in general, in every country. You can experience that here too. When you are not aware of something, you don’t know how to act around it.

F: I once saw a Greek documentary about people who were diagnosed with multiple sclerosis and other mobility problems. These people had no other option but moving with wheelchairs. In a scene of the documentary we see a lot of them in a living-room talking. Between the things that they said was that people in wheelchairs don’t go out in Athens compared to other big European cities because there is not a chance to move around in a city that is not properly formed for people with disabilities.

A: Exactly. As you said there is not a chance. Where can a person with disability go? Only in the street. There are no proper pavements in Greece. No one with disabilities is able to walk on those pavements. Where do you think I can go with the cane? I remember some friends in Greece told me once that I don’t use the cane so much when I go out with them and I asked them: “Where and how can I use it? In which pavement?”. There are lamp polls, trash cans and parked cars everywhere.

F: Yes, exactly.

A: Some years ago I think we received funding as a European country to create blind rails on the pavements so that blind people can use their canes. I have seen it myself  that right on those rails they have planted trees, people park their cars or they have put trash cans or traffic signs. In Greek sidewalks you cannot walk even if you are a healthy person. That’s why people with disabilities in Greece don’t go out. The lady that I saw once holding the walking stick was in Aigaleo (a neighborhood in Athens) where there are huge open space squares. Well this subject has no end, I can talk forever about it. Greeks are unbelievable! We suffer from lack of knowledge or lack of sensitivity! Only in Greece do people constantly park their cars in designated areas for people of disabilities just because they cannot find another spot nearby. Alternatively we park on the pavements as I already said.

F: Well I think that an extra Greek problem is the lack of parking areas. There are not really enough places for parking!

A: Then we should stop using our cars! Many Dutch and English people don’t have cars. What is wrong with that?

F: You are right about that but things in Greek cities are more complicated. Cities are congested (there are many factors that lead to this result) and traffic is an unsolvable problem.

A: That’s why my return to Greece worries me. Now you understand me. Here I can go out as all the other people because of the existence of some facilities that my health insurance and the state provides me. First of all I could pay a little bit more in my health insurance company in order to have a taxi transfer to every doctor or hospital I want. Moreover, there is a special taxi service which I can use for going out. In this way I can visit the people I want. Another taxi service can take me even out of Rotterdam, so basically I can go wherever I want in the Netherlands. Maybe some people don’t consider cabs as the most convenient or fast way of transportation, but in this way people with disabilities can feel independent.

F: Based on your experiences what will you suggest to people with Usher Syndrome that feel that they have nothing important to do in their lives? What activities or experiences people with sight or hearing problems can ask for?

A: Well it depends on how advanced is the Syndrome. Probably the ideal job for someone with a disability is an office job. However, I should mention that big and crowded rooms could be really difficult for people with hearing and visual impairment. Additionally, use of computers is generally recommended for people with disabilities as there is a special technology even for totally deafblind people. Business trips could be difficult for people with disabilities. I experienced this difficulty during my last job in London. I was visiting clients all the time and that demanded a lot of my energy. Of course then I couldn’t realize that I should put a limit to my job demands in order to stop torturing myself – unfortunately I didn’t have the official diagnosis then. Finally, the interpersonal contact with a lot of people – e.g. a meeting in a big room – could easily exhaust people with hearing and visual impairment. A meeting with 2-3 people is better because someone can always use some help through technology.

F: I see.

A: Now apart from office jobs,  there are a lot of sports that people with disabilities can do. Unfortunately I don’t know many details, since I am old enough for sports.

F: Yes, but you do dance, right?

A: Yeah this is my hobby. I suggest sports not only as hobbies  but even as a professional career. Some people may do sports professionally and be athletes, participate in games and win prices.

F: Right. We see so many people in Paralympics and other tournaments.

A: Exactly. Sports are an ideal option even as a main activity or a hobby. And there are enough sports for people with disabilities. For example there is a group for runners here in Rotterdam. It is like a small marathon, they run twice a week and healthy people accompany them. I know that many other people do cycling or canoeing. Also, dancing is always a good option. I have the pleasure to participate in a group of people with visual impairment here in Rotterdam and we do Latin dancing. Finally, for those who love reading books there is a special computer program  which “reads” the books to you!

F: That’s cool!

A: Yes, it is. Also people with disabilities can create things with their hands. During the revalidation here I worked with several materials. I used stone, wood, I made straw baskets. They taught us to sew, to paint and to reform fabrics. As you may understand there are various options even for people with disabilities and the only thing they can do is to learn about them. If you feel that you want to express yourself, you will find the way to do it. By adjusting  your life you could still do what you like or you could find something else to do that you never imagined you would like. A disability is a chance to do stuff that you couldn’t imagine before that you will do.

F: What is your biggest dream and what is your biggest fear?

A: My biggest fear is…

F: You start from the easy part, huh? (We are laughing). Ok, I accept that but after the fear you will tell me about your dream too.

A: My biggest fear is as I told you before that my symptoms will get worse. I think that I am not as afraid as I was in the past. I think that nowadays I feel in the exact opposite way. I say that I will accept things as they come. I am so tired to be worried about so many things, so I skip the future part! (She is laughing). I think my biggest fear – more than the disability itself – is the lack of independence. The full dependence on another person.

F: It is so important that you say that. As we said previously people who act like victims want other people close to them all the time. You say the exact opposite, that you don’t want to be a dependent person.

A: Yes, I think that my desire is related to my childhood (She is laughing). I want the control of my life and I prefer to be alone. I think that I was always like that. I want to spend time with myself. Many people cannot stand it, I don’t mind at all. I don’t have a problem if I don’t see a human being for a whole day. I am fine with it, I enjoy it.

F: Good. Now tell me your biggest dream.

A: (She is thinking a bit). The house by the beach. And I bet that you would visit too! (We are laughing).Crete

F: Absolutely. Just go to Crete and have the house of your dreams and I will be there for long holiday! Or even better I am going to visit you every summer!

A: I wish I could make this dream come true. That’s why I want to find a job that might allow  me to have this house by the beach.

F: I think all you need is a good business plan. You need to do everything through the internet and whenever you want you will go for a walk to the beach. Should we search for a business partner?

A: (We are laughing). Well I am not sure about a business partner. I don’t think that we will stand each other for long. In general one should be cautious with partnerships even with their closest and  most beloved people, especially if one wants an investment to go well and keep personal relationships in a good level.

F: What did I forget to ask you until now or what would you have liked me to ask you?

A: (She is laughing) This is a typical interview question, right? It is a very nice question but the answer is difficult!

F: If you cannot answer me right now we can just go to the next question. No worries, we have discussed a lot of things since we have been talking for some hours.

A: I think that we said a lot of important things regarding the syndrome. I cannot think something more that I wanted to say and I didn’t. I insist that we should keep thinking positively and enjoy life to the fullest!

F: I hear some irony to your words or no?

A: Yes, you are right, there is some irony. Unfortunately I am talking about positive thinking but I am not doing it, at least not this period. I truly believe it when I say it, but I am sure that I don’t always apply it in my life.

F: Do you want to give a message to those readers that have either hearing or visual impairment or both?

A: I have a lot of messages. (She is thinking a bit). You should always remember that you have options. Don’t you let anyone or anything to stop you from doing what you really want. Moreover, what I learned in the Netherlands is that you have the disability, but you are not the disability. I think this is the most important message, I don’t want to add something more.

F: Last question: If you will be informed tomorrow that the therapy of Usher Syndrome has been found, how would you feel?

A: I think I would be very cautious (She is laughing). Simply I wouldn’t believe it. At least at first.

F: Would you take the magical pill that solves the problem?

A: If I was 5 years old yes I would. Right now, I don’t think so (She is laughing). I think I wouldn’t believe it! Only if other people were treated and would become better, I would take the pill.

F: Is this a good thought for you?

A: Yes, of course it is a thought that crosses the mind of a person with a disability from time to time. I just think that is not a realistic scenario.

F: If it was a realistic scenario, the magical pill would be a desirable  solution for a person with a disability or not because people with disabilities tend to love their disabilities so they don’t really want to stop having them? In other words, do you think that some people with disabilities would deny to take that magical pill?

A: Yes. There are people who are used to living in a specific way  and they are afraid to experience something different. I have read a lot of stories, most of them are of deaf people who – especially those that are born deaf – know that there are ways to cure their hearing but they don’t want to change their lives. They have their own world and they live in their own society.

F: Would you have an operation to restore your hearing problem?

A: I have thought about it. Right now I cannot have an operation because my hearing loss is not that serious. If my hearing gets worse, I will seriously think about it. The really good thing is that technology and medicine are evolving every day so we can be positive for the future. There are always alternative options and there will be more. Let’s not be depressed.

F: This is the end of our discussion. Afroditi, I want to thank you so much for this interview.

* The photos of the interview were chosen by Afroditi

 

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