I Speak to You through the Cyber Eye: I Want to Live

After his stroke, Andrzej can only communicate with the world using his eyes. The court will assess whether he really is communicating via the Cyber Eye.

They had celebrated his 50th birthday only the day before. He had spent it with his family, he said. For him, that’s what the band was.
“Andrzej was our top dog, the capo di tutti capi,” says Wojtek Dudziński from Andrzej’s band, and a close friend. “He was the one who got stuff sorted out, did a fantastic job as MC, and sang the most difficult, high, tenor parts.
Such as in My Sea. That was when it happened.
Accident
It all started with the Sea Scouts. That’s where Andrzej Grzela met Danuta, his wife-to-be. He was about to graduate from a mechanical engineering school and wanted to go on to maritime college, but Danuta’s parents were doctors, so he was swayed to opt for medicine. He would spend all his time either in the hospital or in rehearsals and concerts. He was a great doctor – a surgeon –but the hospital work stressed him out and interfered with his music. So he quit and set up a private clinic.
“Our little joke was that three days a week he sang the high and low notes, and two days a week he worked on different highs and lows – tits and bums! Because that’s the people’s bits he operated on, you know,” Wojtek adds.
For his three children, their daddy was a hero. They worshipped him. He took them skiing and sailing. He had a house built, a great house, and he bought a Mercedes and a Subaru. And now, what use is all that to him?
It happened on 22 February 2015 when they were playing a concert. Andrzej stepped back from the mike. He reeled and sat down heavily on a chair. He hung his head. Then he threw up. The audience froze. Andrzej could not speak. He willed himself to get up. The band members helped him down from the stage.
He is a doctor – he knew that he had just had a stroke.
Not for a moment did he lose consciousness. He was rolling his eyes around as if to say, “Don’t lie me down” – because that increases the blood flow to the brain.
The ambulance took him to hospital. They operated straight away. The surgeon told Andrzej’s wife, “He is critical. A two-percent chance of survival.”
Danuta and Wojtek stayed in the hospital with Andrzej as weeks went by. To start with, he was in intensive care, on a ventilator. Later, he started to breathe on his own, but you couldn’t get through to him.
“I would be watching his chest – to see if it was going up and down,” Wojtek recalls.
In this way Andrzej spent two whole months in the hospital in Krakow. Then his family took him back to Silesia, where he comes from. His wife felt that was the best option – Andrzej has friends in the medical profession there, everyone knows him, you could count on his soul mates.
They knew that the National Health Service was paying for the hospital and six months of rehabilitation. After that, the family would be picking up the bill.
Funding
Andrzej’s music friends immediately launched an appeal to pay for his treatment. At concerts, they organised auctions – a graphic piece with Andrzej’s portrait went for 1 200 złoty – a pretty impressive result!
Andrzej’s former patients and music fans joined in, and even complete strangers. The whip-rounds have brought in enough to cover the entire costs of treatment not subsidised by the state.
We are talking serious money. Sometimes as much as 11 thousand złoty a month. And prising money out of people gets harder – enthusiasm dwindles and donations dry up, if there is no media support. At one time, a TV channel wanted to shoot a documentary about Andrzej. That would have been a chance to reach beyond the sailing community, where they were popular with their sea shanties. But Danuta won’t have it, she doesn’t want his image flaunted.
“She never asked how much money we had or how she could help. She would just bring invoices to be paid. And not only that, but right up to the autumn of 2017 she was collecting Andrzej’s entire pension and the care supplement, leaving nothing at all to cover the cost of his stay in the care unit. Just once, she transferred a hundred złoty to the account of the foundation set up to provide care for Andrzej,” says Bogdan, one of Andrzej’s fellow band members, mournfully.
Radio or TV programmes about Andrzej? Photo coverage on Facebook? Danuta wants none of it. She feels that her husband wouldn’t want to be seen by his fans and patients in his present state. It’s the same story with visiting time. Andrzej was an open person and got on well with people, but Danuta claims that now he would not welcome anybody and everybody. She has begun to vet visitors. No wonder fewer come now.
Treatment
“None of this is good for Andrzej. Same with the unauthorised treatments that his wife came up with off her own bat,” fulminates Bogdan. “Her sister, who is a doctor, gave Andrzej injections – homeopathic, as far as I know. Danuta fed him Chinese herbal mixtures directly into his stomach, using a feeding tube. She had agreed none of that with the doctors in charge.
Danuta explains that the doctors were behind her, and no harm was done to Andrzej.
Wojtek: We could see it was useless. I suggested we move Andrzej over to Bydgoszcz, where they have a good neurology department. Andrzej’s brother-in-law went over to check it out and said that it wasn’t all that great, after all, but instead, he discovered this fantastic centre near Bydgoszcz – where they use the Cyber Eye.
Communication
They took Andrzej there in February 2016, almost a year after his stroke.
“I went in to greet him. Andrzej’s face was turned towards the window, he didn’t notice me. I spoke to him but there was no reaction, not a blink,” recalls Agnieszka Kwiatkowska, PhD, a clinical speech and language neurotherapist, who with her team invented the Cyber Eye. She is also a legal expert in the assessment of awareness and communication in persons in vegetative states through the use of eye tracking.
At first, Andrzej’s therapy was far from plain sailing. He was tense – his fists were clenched, legs pulled up, neck rammed into his shoulders. This made his eyeballs rigid. He had bitten his lips till they bled.
One day, Wojtek and Bogdan – Andrzej’s bosom buddies from the band – , turned up to visit. Danuta came along, too. Bogdan sat next to Andrzej, holding his hands; Wojtek and Danuta were seated further back. Andrzej’s eyes were closed. “Andrzej, I said to him, why don’t we just have a look at the equipment,” Kwiatkowska says, “Perhaps you could select something for your friends, send some special message for them?”
And suddenly, Andrzej kind of woke up and looked at the screen. And then, he selected: “Hi Wojtek”. Wojtek nearly fell over. “H…hi, Moose!” (because that’s what he called him). Then, Andrzej: “Hi Bogdan!” Bogdan started crying. Andrzej signalled: “Where is my wife?” “Here – here I am.” Andrzej added: “Perhaps we can sing something together?” Then he closed his eyes and did not open them for the rest of the visit.
“At that point, for the first time, we believed that there was some hope…” Wojtek is plainly overcome with emotion.
The Cyber Eye came to be used to treating patients in a coma only by chance. Agnieszka Kwiatkowska saw a TV programme about equipment that tracks eyeball movement to help teach concentration in children with ADHD. Why not modify the idea for working with neurological patients, she thought. She talked members of the team working on the project at the University of Technology into visiting the centre where she worked bringing along with their apparatus. The first patient who looked at the monitor screen made contact. Then others did so, too.
So, together, they began to work on the Cyber Eye, later marketed as C-Eye – the “Eye of Consciousness”. The device pins down the point on the monitor screen that the patient is staring at. If he lets his eyes stay on a particular spot, this means: click here. In this way, the patient can select readymade statements, such as “yes”, “no”, “I am in pain”, “I miss you”, “turn me on my side”, or even write on a virtual keyboard.
System Sensor works in a similar way. Roman Biadała created it for a friend suffering from motor neurone disease. When he saw how much demand there was, he began to produce the system on a wider scale. The sensor makes it possible to fully operate the computer and access the Internet by eyesight or through – however minimal – movement of any part of the body. A special panel lets the patient control a TV set, decoder, air-conditioning or lighting, making life easier for the carer, as trying to decipher the patient’s wishes or working out which TV channel to put on can be time-consuming.
But Andrzej’s wife does not believe that the Cyber Eye is of any use to brain-damaged patients who have had a stroke.
The Marriage
Andrzej began to change. He stopped biting his lip, he became more relaxed, began to perform various tasks, read, and swallow. But then, the first message started to come through: “I am frightened”.
Every time his wife visited: bleeding lips, excessive salivation, tension, shut-down.
Kwiatkowska: I couldn’t touch him, do anything. I couldn’t work out what it was about. Andrzej’ sister came to visit. When she was present, he used the device to say: “Hi, Kasia, I love you”, “I am frightened”, “Help me”, “Danuta”, “I hate”.
Andrzej’s friend Bogdan says Andrzej and Danuta’s marriage had been on the rocks for four or five years. But nobody around knew about it, because that was their private business. Andrzej was anxious about getting a divorce. He knew it could make access to his children more difficult. But a couple of months before the accident, at Christmas, Danuta had given him a Christmas card: “[…] I am trying to be understanding, so I’ll let it go. Be happy and free.” Andrzej took a picture of this card and sent it to Bogdan, adding that it looked like there was a chance of an amicable parting of ways.
Bogdan: I know that he later saw a lawyer about getting a divorce.
Off Her Own Bat
Following the accident, Danuta wants to spend time with Andrzej and give him all she can. She says that for her, the most important thing is this man imprisoned in his own body. Her mother, a doctor, helped her to get assistance from professors who were specialists in hyperbaric therapy used in the oxygenation of brain cells – which was supposed to be of help to Andrzej.
The treatment takes place in a special chamber, where the patient breathes oxygen at a pressure higher than normal. This aids the regeneration of damaged cells. There is such a chamber in Silesia, but it is designated mainly for miners who have suffered burns. Danuta wanted to take Andrzej to such therapy in October 2016. The doctor in charge thought the treatment questionable, however, on account of Andrzej post-stroke epilepsy – he wanted to know what the patient himself thought about it.
Using C-Eye, Kwiatkowska asked Andrzej if he was aware of the principles of the hyperbaric chamber therapy. He signed “yes”. Would he like to have such therapy? “No.” He was asked again. He repeated these answers . Kwiatkowska passed the recording on to the doctor in charge, who declined to give his consent to the hyperbaric chamber treatment.
“The wife knew that the doctor had not agreed to the treatment, but she put Andrzej in a wheelchair and wheeled him out of the Centre using pre-arranged medical transport,” Bogdan continues with the story. The Centre staff checked the ambulance number plates and found out that Andrzej had been taken to the hospital in Bydgoszcz, where they have a hyperbaric chamber.
Kwiatkowska: The doctor in charge rang the hospital telling them to stop the treatment. I was there when he made the phone call. But the procedure went ahead.
Danuta took Andrzej to just that single treatment. She says that Andrzej, who is quadriplegic, was more relaxed after the session. The following day, she took him out for a walk and could see that he was interested in nature. She regrets that the therapy was not continued.
Consciousness
Kwiatkowska: Danuta comes back and says, ‘If you have banned me from taking Andrzej away, then I am cancelling the contract, and moving him to another Centre so that he can have the chamber treatment.”
So the decision was made to call in a psychiatrist to assess Andrzej’s state of consciousness and whether he was capable of making decisions for himself.
The examination took place using the C-Eye. The psychiatrist had never used the eye tracking communication device before. He asked for 12 names to be placed on the screen and asked the patient to point to his own. The patient pointed to “Andrzej”. The psychiatrist asked that the name be transferred to another position. Again, Andrzej correctly pointed to his name. The psychiatrist then asked for 12 numbers to be displayed that were all close to Andrzej’s own age: 51, 52, 53. Andrzej correctly indicated his age. The psychiatrist asked about the current season of the year and Andrzej’s present location. From a number of indicated places that were important to him - such as his place of birth, where he lived and where he previously underwent rehabilitation – Andrzej was to select where he was at the moment. Again, he did this correctly. Finally, the psychiatrist asked, “Andrzej, would you like to stay here permanently?” Andrzej replied, “I don’t know.” “But do you want to be here now?” “Yes.”
Kwiatkowska: “And when the psychiatrist finished, he says to Andrzej, ‘I’ve no doubt that you have the awareness of place, time and your own self, and that you are able to make decisions about yourself. I hope that we will meet again under very different circumstances.”
For the first time ever, Andrzej lifted his right arm and shook hands with the doctor.
Bogdan and Wojtek came to the Centre and spent almost three hours talking to Andrzej’s wife, trying to make her understand that they, together with other people, had been helping Andrzej and it was not for her to go against his – clearly expressed – will.
“As far as I was concerned, it was a kind of oppression, molestation. After all, Andrzej – quadriplegic with aphasia – couldn’t shout at her, stamp his foot, hold on with his hands to stop her. He was defenceless. Danuta was not interested in the psychiatric opinion and didn’t care that Andrzej didn’t want the chamber treatment. She kept hiding behind the court custody she’d been granted – it was up to her to decide about everything. But custody is only an auxiliary tool. Above all else, Danuta should have taken into account Andrzej’s own wishes, no matter in what way he expressed them,” Bogdan gets frustrated.
Two days later, Danuta sent Bogdan and Wojtek a text message: after what they had said to her, her health had dramatically deteriorated. Until she was better, they were to look after Andrzej.
Decisions
Andrzej was recovering his strength, was beginning to move his arm and utter sounds. He was working with the device and making excellent progress with communication. He would choose what he wanted to wear: one day, a white shirt, the next – a blue one.
Kwiatkowska: “One day he said, ‘Help me.’ I didn’t know how. I kept asking him various questions, and what we arrived at was that one of his friends was to help him.
She put on the C-Eye the names of 12 people that she knew of, including Bogdan, Wojtek, Andrzej’s sister – Kasia, and his wife, Danuta.
She asked, “Who is to make decisions about you?”
He signed, “Only I.”
She asked, “Who is I?”
“Andrzej.”
“But there must be a person who will communicate your decisions. Who should that be?”
“Bogdan.”
Bogdan contacted a lawyer and related Andrzej’s story. The lawyer visited Andrzej in hospital and communicated with the patient using the C-Eye for him to corroborate his own wishes.
These were his recommendations: “To have no more than one visit per month from the wife, of a duration no greater than 30 minutes, with a third party present”. The solicitor also drafted a new custody agreement for Bogdan, as well as a power of attorney for the removal of the previous court custody arrangement, and an agreement between Andrzej and the Centre.
He arranged for a notary to read out the documents and check repeatedly that they expressed Andrzej’s wishes.
The Experiment
In June 2017, Andrzej’s wife applied to the Court to have him declared legally incapacitated.
„(…) The Petitioner declares that she submits the present Petition due to the fact that her husband Andrzej Grzela despite his severe physical disability has carried out a number of legal procedures intended to deprive the Petitioner of undertaking any decisions related to matters concerning her husband, and the Petitioner has well-founded doubts concerning the legal validity of these procedures.
(…) Once mental incapacity has been declared and a guardian finally appointed, the guardian will have the power to guard the assets and rights of Andrzej Grzela, which is impossible to implement under current circumstances.”
The incapacitation proceedings are underway.
The decision whether Andrzej is capable of conducting his own affairs and aware of the decisions taken and their consequences and whether the communication using device controlled by eyesight is sufficient for conveying such decisions lies with the Court.
The Court has been examining the case. It has appointed three legal experts – psychologists and a psychiatrist, but none of these is an expert in eye-tracking communication. A number of hearings have taken place, with evidence given by witnesses, the staff of the Centre where Andrzej had been treated, the notary who had dealt with corroborating Andrzej’s wishes, and his friends. The Akogo? Foundation has taken part in the proceedings. Their statements present a variety of dramatically different experiences of their communication with Andrzej: ranging from “he communicated himself what he wanted to do”, “he was reading texts, also in English”, “he advised his son what specialty to study”, and “he reported a toothache” – to “I could never be sure if he understood me”, “there were situations where his eyes followed round, but it was not consistent”, and “I did not enter into any kind of rapport with him”.
The testimonies are more consistent when describing Andrzej’s reactions to stressful situations: he would close his eyes when new people arrived, bite his lip, and his spasticity would became more pronounced. These responses are typical in such patients. Neurological disorders generate anxiety and fear to an extent that is uncommon under any other circumstances.
On 22 March, as part of the court proceedings, an experiment in engaging with Andrzej by the means of the Cyber Eye is to take place. Whether Andrzej is declared legally incapacitated depends to a large extent on the outcome of the session.
The experiment is to be conducted in a centre that is unfamiliar to Andrzej, and by persons that he does not know, whereas in his daily communications Andrzej communicates with people that he is accustomed to, in his own room and using his own device. For a few months, he has been communicating via a new device – the System Sensor, which works in a similar way to Cyber Eye, but has a different operating system and is calibrated differently. All these factors may affect Andrzej’s sense of security, crucial for unrestrained communication.
Under the conditions of legal proceedings, Andrzej is supposed to prove that he is compos mentis, aware and capable of making and expressing decisions regarding his own person.
On one occasion, using the C-Eye, he told his sister, “I find it annoying that you make decisions on my behalf.” “Don’t treat me like a child.”
Agnieszka Kwiatkowska: “We are too quick to diagnose vegetative states and write a person off. If a patient looks at the screen and holds his eyes on a spot – marks it, that tells us that he is aware. Perhaps his awareness is minimal, but it exists. If he answers the test questions correctly, we know that he is totally aware.
Doctor Krzysztof Nicpoń, a neurologist, who was previously the doctor in charge of Andrzej, when giving his testimony as part of the proceedings to declare Andrzej incapacitated, states that he does not consider the Cyber Eye a trustworthy method of obtaining information. According to him, this is not a device that has been unconditionally validated as suitable for communication with vegetative patients.
One of the legal experts went as far as to suggest that the device was as credible as a tarot card reading, and that the person operating the machine was in a
The Cyber Eye has been certified as a medical product and registered as a system for the objectivised diagnosis and neuro-rehabilitation of people with neurological dysfunction and developmental disorders. The device complies with the relevant EU medical Directive. It is currently in use in 60 centres in Poland and by some 250 people at home. And the courts have also placed their trust in the C-Eye, having appointed expert witnesses in communication based on C-Eye eyesight tracking.
Professor Stephen Hawking, the almost totally paralysed British physicist, was using a similar device.
Agnieszka Kwiatkowska: “Visual fixation is one of the indicators of consciousness, and there is no better way of assessing it than using device. Why do we only consider a person credible if they communicate with us verbally – but not, if they use their eyes? They need to focus their eyes in order to indicate something. That is a difficult thing to do. Let us not eliminate people from social life merely because they use their eyes to communicate.
They remain citizens, parents, capable of functioning in society.”
In 1970 the Supreme Court declared that the indication of a person’s wishes can be demonstrated in any way that is comprehensible for others. This can be a gesture, or nodding of the head. It is not the means of communication that matters but the unequivocal message.
From Danuta’s Application for a Declaration of Incapacity:
“The declaration of incapacity of Andrzej is intended exclusively for his own benefit.”
A Final Word
I visit Andrzej in the centre. There is a large aquarium in the corridor. The silver blue guppy is his. In his room decorated with ornaments, there are cards from well-wishing friends.
I ask Andrzej if he has a message to give, a final word. He engages with the virtual keyboard. Even I find it hard to use, because the letters are very small and it requires great precision. Andrzej is trying very hard. When he makes a mistake, he cancels everything and starts again from the beginning.
After an hour, there appears: “I want, must live”.
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The author is writing a book about people who communicate through eye tracking devices. It will be published by Agora.

Info

90 000 totally incapacitated

The court proceedings to incapacitate Andrzej are taking place at a time when the very fate of institutions making such decisions is in the balance. In September 2018, the UN Committee on the Rights of Persons with Disabilities, after examining Poland's implementation of the Convention on the Rights of Persons with Disabilities, recommended abolishing the institution of incapacitation.
“Full incapacitation is incompatible with the principles of human dignity and freedom and respect for private and family life and should be considered unconstitutional,” wrote Ombudsman Adam Bodnar in his statement to the Constitutional Court in January 2019.
Since the ratification of the Convention in 2012, Poland has still not replaced the institution of incapacitation with a system of supported decision-making.
The Ombudsman and social organisations are calling for changes.
The Helsinki Foundation for Human Rights emphasises that, in the absence of any reform of the institution of incapacitation, courts are under a special obligation to interpret the provisions on incapacitation in the context of standards of protection of the rights of people with disabilities, guaranteeing respect for their dignity and autonomy, the right to an independent life and inclusion in society and respect for private life.
The courts consider two thirds of all requests for legal incapacitation. Full incapacitation is declared in 89–92% of the applications, partial incapacitation in only 8–11%. There are 90 thousand people under plenary guardianship in Poland. This number is constantly growing.
Yet, even in the current Polish legal system there exist legal remedies less restrictive of the freedom to decide: partial incapacitation or guardianship for a person with disabilities.

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