Life in Romania with deafblindness

It is now galloping on. Even from a day to the next I can tell the difference. If I am tired, of course my vision is very poor that day. But it does not alleviate, perhaps it is I who adapts. It advances. The loss is greater and greater.

I do not know if I have chances of recovery. It seems to me I only have chances of blindness. For it is at a gallop. It begun at 39 – 40, the phase in which I could not see without glasses. And since then it aggravated. I am now 46. In 6 years… It is a great loss. In 6 years it is… it’s really rushing in.

ON-SCREEN DESCRIPTION – Emina Socolescu suffers from deafblindness [a combination of hearing and vision loss]. Officially, there are only 77 deafblind persons in Romania. Globally, however, the proportion is 0.04% of the population. This indicates that, with a population of 20 million, there may be around 8,000 deafblind persons in Romania.

The imprecise legislation causes most of them to declare having a single disability [either hearing or vision]. Decree No. 762/1992/2007, of August 31st, for the approval of medical and psychosocial criteria on which assignment to the disability class is based, does not even have categories for defining deafblindness.

[Birds can be heard in the background.]

Diagnosis.. there are two. Because this is the situation I am in. Instead of a single diagnosis, there are two. One is bilateral profound sensorineural deafness, and optic atrophy with problems of vision as well.

The nerve is destroyed, partially. And it is progressive. It, scientifically speaking, has shortage of blood supply. The vessels are so thin, that it ceases to receive blood. And a nerve undersupplied with blood is useless, is weak. While it lasts.. it lasts. At some point, all this stuff will end.

There [at the disability classification committee], I was told „You have 2nd level, permanent, for hearing.” I was 24 when I went. That was the first time when I was declared handicapped. My mother has not for a moment thought to enlist me as a handicapped person. She said that I am not… not… I can speak, I can manage, I went to normal schools, I graduated from university, I am not a handicapped person. It was I who wanted it. And I told you it was good that I did so because it was accounted for later, for my length of employment, as it was somehow considered from that time, for disability, that is.

When I wanted to go and sort the vision impairment, I was told this: „Do not enter vision too, because it will not count. You will have the 2nd anyway.” This meant that I ought not declare the vision impairment. Because it was meaningless. However, I have two. Two sensory [disabilities]. Two issues that one cannot deal with. It is either one, or the other. Can you realize how it was for me?

[Traffic noise can be heard in the background. A tram is approaching.]

Not a chance. Here I have to ask what number it is.

Did you see that number?

No, I did not see that number. I must find out what number it is.

So for that electronically displayed number you need to ask.

Yes, in general, electronics make it worse. The white-black contrast is not there, there is black and some weak lights. It does not help. If I cannot understand, I will board, it will eventually get to a junction stop.

And if you ask do you usually hear the answer you get?

This is the problem. I hear or I don’t. I board knowing there is a junction station, one more or two with another, and then I also get time to find out while on tram.

You ask again…

I ask again, somebody else. I cannot bother the same person. And then maybe I have the chance to understand. And I stay on or deboard.

Emina has had hearing and vision loss since childhood. From 2015 she has a cochlear implant on the left ear, which helps her hear at a distance of 2 to 3 meters. Many voices, however, especially electronic ones, are still inaccessible to her.

The television set. Now the TV volume is lowered for me. Here, I probably watched a movie yesterday evening. I don’t need to hear a foreign movie, or a Romanian one, whatever. As for a Romanian one, I have no way of understanding, so there is nothing for me to find in a Romanian movie. I watch a movie that is subtitled.

So last night I watched it, volume like this. Normally, to hear this commercial, I stay here, for sure. I do not watch it anymore, I try not to watch [close] so it doesn’t entirely affect my eyesight, and I turn it.. about this loud.

[TV commercials can be heard in the background.]

Now do you hear well?

Yes… It said something between 6 and 19 September. I lost the rest. I didn’t have time to process it.

To visualize the writing, look, now we have writing… I can see from here.

So you have to sit on the chair at that distance.

Of course, I put my chair here. That’s right. This is my TV. It is set for large font, 16:9, the best one.

Larger means it tampers with the screen limit. I would have no way of reading everything. So the largest font is this one.

But I do not sit in front of the TV. For me it is not my friend. Except for a movie. And for the news, in the past year. I told you that until now I had never understood them. I now grasp it because they head a somewhat eloquent title. If it is insufficiently eloquent I can understand anything from that title. But I strain to hear. Psychological discussions on various issues have started to appeal to me. Politics not. That, I avoid. For me it is operative digging, to find the one who is just and the one who is… I cannot do such a thing with my bit of hearing. No, spare me, politics is not for me. But a news report, something, I enjoy it. I begun listening to it. But I have to sit here. Here, very close. I take a seat, as anyone.

The vision problem was there always. Yet it was a state of atrophy that allowed me to somewhat see. I would get closer. There was never a reasonable distance from the TV, I would sit much closer. The notebooks, I would bring them closer, but everything was visible. Only closer. The blackboard, yes, my desk was in the first row. So I had some ways.

As my years decline it intensified. But, still, I could see. When at university [University of Medicine and Pharmacy “Carol Davila” Bucharest], I would write bigger. I would take the large-written notes from colleagues. Imagine, I had no way of listening while taking notes… no, for me it was altogether too much. I borrowed the notes from my colleagues, choosing the ones with larger writing. Yes, it was a problem.

It wasn’t until 40, 39 or 40, around that time, when the ageing effects overlapped, I believe, with my atrophy. And it has done havoc.

My mother says that, as a baby, after 7 months, I was the first to speak. I was quick. Then suddenly it died out. There was nothing. Until the age of 2, there was nothing. I spoke a bit, and then I spoke nothing.

Around the age of 3 and a half, they realized I do not hear. Not before that. Because I would speak something. It was not a correct word, but something. And then they realized, I don’t know how, the hand clap from behind, you know – not one reaction, obviously. And so they resorted to what was known then: prothesis [hearing aid].

And it worked for me. I accepted the aid. My mother told me I cried then they first put it on. Then I was happy to hear. And that was when I begun to speak, but as before, it was unclear, it was not something normal. Then followed the speech-language pathologist [SLP]. I went to the SLP for 2 years. I was beginning to acclimatize to the aid, it was on the left.

After that, around the age of 30 I already had…, no, earlier than that, I had two aids, I was in the pharmacy. I could no longer hear people. Both were needed. But both… you know what they did for me? It is, I would say, like two distinct noises. You shut a door and as you shut it, this hears in one way, and this in another. There wasn’t just one pillar anymore, there were two. They discouraged me, there was voice-over, I don’t know. And the racket, the noise… Because they are amplifiers. They do not help, they amplify. Intelligibility is lost. You do not understand what is happening. It gets amplified at such a high rate that you do not know what was said. You retain the noise alone, which is disturbing, tiring, it is a stress.

And at one point this one gave in. I started to get ringing in the ears. Goodness me, it is something dreadful. It is something from within you, not something from outside. And it comes over everything you hear. I cannot explain such a thing.

So there was no aid, nothing at all. And as soon as I put it on [the hearing aid], the ringing begun. It was a shriek. It was not only ringing, it was like a shriek. „Ugh, I don’t want you, don’t put this aid in me, I don’t want it.”

ON-SCREEN DESCRIPTION – The salvation was a cochlear implant. She learnt from her sister, who lives in Japan, that such a thing exists. But the price was enormous: around EUR 25,000.

And I want to tell you that I went.. I heard.. I did the research on the Internet, I don’t know how it suddenly appeared to me that we have it too, and that it is even a national programme.

God! So it was luck, it came to me. And a national programme. I said to myself „this is for me, this is it!”

I go to the doctor. Again, the doctor. I then found myself a doctor, he is not there now, he has retired, luckily for me, and others… MD Pascu said „You are dealing with it very well”. I could speak, unlike the deaf-mute I can speak. I have the same auditory capacity as them. You shouldn’t think I hear better. No. I wanted to speak, my mother did not let me be different, other than somewhat normal. So it was an ambition of my family’s. We did not walk the normal path. „Alright, we take up the sign language, that’s it, the child cannot speak, cannot understand…” No, it was such a wrestle, this sort of a fight with life.

And then this doctor said „You are dealing with it very well, be grateful, others don’t. It is not the case for you, the implant is for children.”

„OK, that’s it”, I left disappointed. And I don’t know how, there was something else, it unfolded somehow, I did not give up. I went there after 3-4 months, meanwhile he was gone. And there were other doctors. I found MD Georgescu there, who was chief surgeon for implants, the best.

And then I went in, I was nervous, „Oh my, what am I doing”.

Perhaps she liked me from the start or something, she felt that I can. She is the kind that will lend a hand, not leave you. „Well, if she could fight to get here..”, perhaps she felt „If she could get this far, it means she deserves a chance.”

And so I succeeded getting an implant. But the implant is something else. It is not prosthesis, it is not an amplifier.

Finally, what did the implant do? It tried to retrieve the natural. The natural hearing. I could already understand the words without looking at the speaker. Not all. For me it is difficult even now. Because once I had learnt to lip read, that is my knowledge, I don’t know anything else. To learn to hear, you also need to be a child, because it is another beginning. So therefore, for me, this is missing.

And then, in the hospital, again speech-language pathologist. To learn to hear. Not lip read.

He went like this. Spoke to me. So there were no more lips, finished. „No not read lips.”

Well, even now I still lip read. I do both.

I am a pharmacist by profession. Work is very beautiful. It brought me many satisfactions. And now I suffer because I can no longer practice it.

I did for as long as I could. Not more than that. It wasn’t the case to try more. It was already risky for people. If you miss a single detail or if you are told the person is pregnant, or has something, there are some reactions that.. you have to tell them, you have to know. You cannot risk anything like that. The person gives you a precious detail and you lost it. You are not eyeing them all the time. You are counting pills or handling the money or doing something, I don’t know, anything. It is vast.. The attention is paramount. I cannot cover this.

And then the prescriptions. They became prints. When it was handwritten, it was OK. Although it was messy, medic’s handwriting, whatever, I could decipher it, I could manage. When the printed ones came in, I couldn’t manage anymore. Because of the same thing, the prescription is written very small, to fit in the form, and then it blocked me.

Finally, all the while trying to find help for myself, to carry on, as my idea was not to give up… God forbid! I never thought that I am giving up. I went to see an ophthalmologist.

At the ophthalmologist, you know what he asked me? After doing the tests.. I knew what it was, because the problem was since childhood. Only not so aggravated, not so that I am unable to help myself. You know what he said to me? He said „I cannot help you, but at least you should file for your retirement.” That is when I had a single.., my first revelation that it is almost over. „Yes. OK.” But I was speechless at that moment.

So I made the file. As there was no help. Surely other doctors followed, to consult opinions, „it cannot be, is there nothing..” „There is nothing I can do for you. The nerve is atrophied.” every time… „The nerve is atrophied…” It does not receive blood, does not capture the light to transform there into sight. There was nothing that could be done. And so then, that was it. I filed for my retirement, that is what followed. What else could have followed?

And, finished. There came the acquiescence. I retired and isolated, obviously. And I am here.

ON-SCREEN DESCRIPTION – In 2004, Emina bought a land in Ialomita, and 5 years later she moved into the house she had built here. While still in service, she commuted. Her husband, with whom she has a 10-year-old daughter, left when her hearing loss was at its peak. Since her 2018 retirement, she mostly works for her house, garden, orchard and vineyard.

When I am busy, I enjoy it. Not to idle. And it’s busywork here. In spring a day’s work is not enough. I get to the vineyard, the trees, the grass needs quite frequent trimming. I must be occupied…

I hammer nails, cut, not a problem. I can hardly wait to see something done, a kennel, anything. You saw in the kitchen that I am trying to make some shelves.

Once I was checking my trees, seeing what ought be done in my garden.. And there, suddenly, right at the last tree by the gate, as I was walking, tending to things, I don’t know, and I was looking up the tree, not down, and thought „Oh, what’s with this bough here?” It was in the way there.

And then I leaned to pick it up. Then, at that moment, not before, but right up to here, the smell hit my nose. What do you think it was? A snake. That was a snake, not a bough. Can you figure? I had a kind of chilling backlash, I don’t know how to tell you. I stepped back. Indeed it did not move at all, if it had, I would have seen it sooner.

It was the smell that struck me. The reptile stench. Because it smells bad. Yes, the snake does stink. That was luck, or the providence perhaps, I do not know. I find myself in situations that leave me wondering, why do such things happen? I cannot explain. That is how it was with that snake. You can imagine that I gave up…

I had the chill, a little scare, that is all, the snake won’t eat me, nothing happened. I had to give up, grab a stick, get rid of it using the stick, throw it out and that was all.

[Siren sounds can be heard in the background, coming from city traffic.]

I wanted the isolation. I isolated myself. That was the intention, nobody told me „go there”. I could have stayed very well in Bucharest. But my need is for isolation. I do not need noise.

Roads…, the surrounding unknown…, because I have vision loss.

Eh, the city comes with twists. I cannot easily visualize the bus number, it is already a problem; I cannot see the traffic lights… From red, green, I don’t know, they aren’t.

ON-SCREEN DESPRIPTION – Now, however, Emina is thinking to sell her house and return to the capital.

I am afraid to walk on by myself in these conditions that are here. Because we do not advance in Romania so soon. The houses, we build them as we can, but the support from outside is very small, on the part of the state, the development is very poor. We still didn’t get to have water from internal network, the commune’s own. No. We still didn’t get to have transportation, didn’t get to have shops. No, something doesn’t work. And there are, anyway,.. let me say from when I built, 2004. Until 2021, it’s been 17 years.

I have more problems that one who can somewhat manage, gets a car and goes some distance. But I cannot. I depend on my neighbors. Do you realize? The modality of asking a neighbour for help reaches a limit.

And usually, people want to be kind, they will not accept [money for fuel], but in fact I feel in debt. So again the situation is such to compel you not to call again, other than within the limit of common sense. Once, twice a month and that is it, enough, no more..

ON-SCREEN DESPRIPTION – Each month, Emina must live how she can with her 900 lei pension [accumulated after 22 years employment], the 375 lei disability allowance and the 250 lei incentive from the Bucharest City Hall.

My pension was deducted, normally, from wages. And these wages were substantial, I built a house, I did with it what I ought to do, if I had otherwise… entertained myself, or do something else, squander it anyhow, I would see none of it now.

What I want to say. It was big, it was above average. It was alright, everything beautiful. In my employment record book… perhaps you are familiar with this period… we are about the same age. At one time the minimum wage was common practice. And I was the best for it: the guileless pharmacist. What guile could I put forth? Grateful to have a job. OK, the wage more reasonable, the employment records show little, then nothing.

That was in fashion, record what you can, give one nothing, and nobody taught me. At the end the conclusion was that I have 700, in the meantime it was raised to 900, as several years passed.

ON-SCREEN DESPRIPTION – Although she has two sensory disabilities, Emina was included in the 2nd disability degree (severe). For this reason she does not benefit from a personal assistant/companionship. Under the Romanian law, only those having the 1st disability degree (profound) have the right to companionship.

This is a magnifier that I use for shopping. It is easy to quickly point to something. This I have no way of seeing, but I can see this one. No, not ingredients, God forbid! I can see what is written here. It is chocolate, weighs 700 grams. That’s it. The other letters are too small.

Other problems call for the other magnifier, which my sister brought me from Japan. With this one small letters are visible. And large ones, obviously. Have a look at the vision it offers me. I can also neutralize color, because the problem here is the color, I could have seen „tuse” on a different layout.

No. Have a look, now I can see it.

Steps are a problem for me. In Japan I saw that steps have a yellow line. That yellow helps me see the line where the step ends… I am concerned with how to step on it.

Steps for me are like this: I take a long time to look at them. I don’t know whom I encumber on the way, but that’s that, I must take long to watch my step. Not to fall, I am afraid of them. I have no line, no clue. I see there are steps, that is if I see them timely… But I walk slowly, I trained myself to walk slowly. I mosey on and bore anyone with my pace. Like a babushka.

In Japan, my sister was telling me that the blind go shopping. How can that be possible? I can somewhat see and still I can hardly go, and I always go with someone. How do they? And I saw indeed one day, a lady simply passing the street with a trolley. An old person. And that trolley beeped, it was a shrill sound. I could hear it. Here and there. I don’t know what it indicated, what that trolley did, or it was an acoustic signal for passersby. I have no clue what it did. And then I said to my sister… I wandered the streets in Japan. I mean I enjoyed walking around her house, certainly I memorized the streets, it was something necessary so that I can reach back home, as there was no way of asking in Japanese, whatever they speak there.

I knew how to find my way along several streets, and that woman was alone on the street… And I told her what I saw and she said „Yes, she is blind”. That trolley had a sound arrangement. And so it goes. They have technology so that person can manage. She was actually carrying her shopping home.

Do you think that the Romanian state should also somehow intervene and provide at least in part subsidy for such technologies?

God, I have no such pretension from the Romanian state. At least to be able to see steps, I don’t know, to let it have a yellow line, at least this. So I don’t fall. Or the bus numbers, to see what stops by. I have no such claims, God forbid! At least assign deafblindness justly, as it is such a severe problem for one, such that one cannot really manage by oneself. To give us companion… that is all. A companion. I don’t mean all day, God forbid, to cook for me too or something, no. To accompany me at least to those front offices where to sort my problems, to go to the committee, to get the implant adjusted, as this too needs adjustments. I also need doctors, I need NAFA [National Agency of Fiscal Administration], various problems, glasses need lens changing, so we can read a bit more. Various matters where I have aural and visual contact with someone. Let one be there.

How do you manage at front offices?

Very hard, very hard. The front desk is usually a person communicating something to you. I say what I want, but what I get back is a bit… One tries to explain once, twice, notices I can’t hear, I say I can’t hear, and one is benevolent, or writes it down for me. „Please, .. if you have a marker…” This is about how I end up. „You mean you can neither hear, nor see? What do you want to do here? What exactly do you want, to mess up my workday?” People behind, you can imagine, have no more patience, no more.. some want to tell me, help me, but there is a situation, an inconvenience for everybody. A companion for such matter would be good. But for the 2nd degree, companion is not granted. You need the 1st degree.

Yes, I agree, one without legs, without hands, yes, needs your help. But you ought to say what is it you do for this other one? This one too cannot adapt, is out of contact with the surrounding world, is unknowing.

I do not know the news. I told you I watch the news now. I saw last night… somebody died… I forget… Patzaichin… I don’t know him… canoe sprint… our great Romanian sportsman. But I do not know this man. To me, he is unknown. This information has not reached me, who he is. Then I saw Ion Caramitru. I know this one. But where do I know him from? Just the name. I have not watched a Ion Caramitru film. I have not seen a play of his.

How did you manage as a mother with these problems that you have?

Mother?

Yes, in this capacity.

My daughter is with grandmother, not with mother. Quite tough… Grandmother took her care. She comes to me during vacation and in fact comes to help me. Because it is not I taking her places, it is her taking me. „Mummy, that is so, that is so.” Warnings to everything. Well.. and so then, which is the mother and which is the daughter? It is nevertheless tough, for me it is very tough.

You ought to tell me very nicely what you want to say. If you want to insult me or if you raise your voice at me, perhaps even this I cannot get.

I can easily find excuses for anything, I am tolerant because „Look, this gentleman is talking to me, he has something to tell me. If he raised his voice is because he noticed I cannot hear. Even though he can use the same tone of voice, just be in front of me or be more patient, that is all that’s needed, but the poor man has no way of knowing. ”

I refuse to think about the future. The future is anyway not a good one. For anyone in the end. But I, more than that. Just so I don’t think of the worst… being entirely blind… My hearing is OK. I consider it OK compared to how it was before. So as to not think of the future I keep busy with the present. And I think it is good that I do.

Had I known of, what was 20 years ago, my future that I would now be unable to practice pharmacy, or able to see no more, everything would have crumbled for me. To think then, in my childhood, that I will not see… No… So I set it aside, I did as I could. And that’s that.

The tactile [signing] may give me an advantage, and Braille, should it reach that level, to be unable to deal with it at all.

It is like this. I will not give up, because I cannot, it’s not my nature. I will learn those too, I will continue reading books, whatever the cost. We lose… the hearing, can’t lose it anymore, it is won. We lose sight entirely, it’s OK, there is Braille. As they can manage, I can manage too. It’s no tribulation. 

I do not conceive ill of life. And, as I see things good… And… I want to be optimistic, or otherwise, no… we would have mental problems in the end. With all the aggression musterable against helplessness… What can you say? So nothing is bad. And even the people, I don’t want to see bad in them. Always, the one in front of me is good. This is where it all stems from. From the good. „Look, he is good, I trust him…” Certainly, this gets demolished in due course. But not with everybody. I have met good people. They remained good. But… This is how I see the world: good. Man [the synecdoche] is beautiful, man must help. Should one decline, it’s one’s problem, not mine. I want to see the world this way. And you cannot pluck me out of this. This is how the world should be.

[Music can be heard in the background.]