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I was sleeping and he woke me up. He said things are beginning to get worse. It’s better for you to go. And at that time, the same, same time, we heard gunshots.
CONNIE WALKER: In South Sudan, that is the fear: that as tough as life has been for the young country's brief five-year existence, things are getting worse. And according to the UN, it's the country's own government soldiers committing violence and rape. The country may be a world away but some say Canada shares some complicity in the atrocity, as a Canadian-owned company sells armoured vehicles to those same soldiers. We travel to South Sudan for more, first up today. Then…
What was most terrifying was that I might lose everyone. I might lose myself also. And I had already been losing myself. I’d been losing my mind.
CW: After being diagnosed with a brain tumour, Demetri Kofinas began losing his memories one by one till there was virtually nothing left. Our documentary reveals the surgical procedure that seemed to work like a miracle, opening the gates to his past and allowing his memories to come flooding back. The documentary Mind and Matter in half an hour from now. I'm Connie Walker and this is the summer edition of The Current.
[Music: Sting]Back To Top »
Canada must be accountable for armoured vehicle sales to South Sudan, says activist
Guests: Edmund Yakani, Paul Champ
CW: South Sudan may be the world's youngest country, but twice already major hopes have been dashed. The nation gained its independence from Sudan in 2011 but celebrations were over by 2013 when factional fighting left tens of thousands killed, according to the UN. Then this summer, a peace deal signed last year with great optimism fell apart. On Friday, the UN Security Council voted to strengthen its peacekeeping mission to South Sudan amid fears the growing violence could plunge the country back into a civil war. The root of the conflict is a bitter rivalry between South Sudan's president Salva Kiir and his long-standing opponent, former vice president Riek Machar. But of course, those affected the most are the everyday South Sudanese. People like Nyamal Gach.
Everyone was starving. Seriously, to be sincere. There was no food. We are not given it by the UN and that’s why there was so many rape cases because women tried to get out there and get food for their children.
CW: That was Nyamal Gach speaking with freelance reporter Justin Lynch in a camp in the South Sudanese capital, Juba. The camp was set up to protect civilians but as you heard her say there, food supplies have been insufficient. And UN officials say government forces have been responsible for widespread killings and mass rapes since the fighting broke out. So women like Nyamal Gach face a brutal choice between being hungry in the camp or risking violence and sexual assault from both sides of the conflict when they leave the camp for the market. We're going to hear more from Nyamal Gach and others in South Sudan but a warning: that what they describe is disturbing.
FEMALE VOICE: It has become dangerous because whenever we try to get out there to buy some things, then women get raped, get beaten and yeah. That was what happened.
MALE VOICE: So why don't the men go out? Right? How come it's always the women going out?
FEMALE VOICE: They say they don’t want to see anyone, any man intrusive—anyone being intrusive. So it’s not just for men. If you go there, you’re a kid or a big man, they don’t care. They will kill you.
MALE VOICE: So the trade-off is either women are raped or men get killed.
FEMALE VOICE: Yeah. Exactly.
CW: Our reporter in Juba also spoke with Tabisa Wuor. Through a translator, she describes having witnessed firsthand one of the incidents of mass rape that the UN and human rights groups have documented.
FEMALE VOICE: She’s saying when that incident of raping happened, she was there but she was being released because she is old. The women were coming from the market along the road and then they were stopped. When they were stopped, then they were told to stand on the line and then they start selecting the youngest ones. Then the old ones were told to go and then the young ones were raped. Thirty men for each girl. Then those who were raped, she saw them. And then after raping them, they put those bullet—the bullet for the gun inside their baby canals. Then they were brought inside here to the hospital. And then they were washed.
MALE VOICE: So they put bullets—
FEMALE VOICE: Yeah, inside their uterus. They put them inside. After raping them, they put some bullets inside so that they cannot give birth.
CW: For his perspective on the current conflict in South Sudan, I'm joined by Edmund Yakani. He's a prominent South Sudanese activist and director of Community Empowerment for Progress Organization, an NGO that focuses on peace building and the protection of civilians. He is in Juba. Hello.
EDMUND YAKANI: Hello.
CW: Thank you so much for joining us. Edmund, tell us, how has this recent violence affected you personally?
EDMUND YAKANI: I'm living in a house close to the military headquarters called Bilpam. That's a military barracks. So when the conflict break out and things are getting worse, I have to leave my house and move to a site of safety. Then later on, army came in and looted all my property. So TV, fridge, all my assets, even my bed, so I'm left stranded without anything. That's the first thing.
CW: Your house was attacked.
EDMUND YAKANI: Yeah, my house was attacked. So the following morning, I went to the house to see that I found looted. And when I was in the house also, there was a specific targeted attack, simply because of the work I'm doing, being as an activist. We had been spotted out as people who may report a bad incident so national security came in and attacked the house. And I have to move [unintelliglble]. So right now I'm in refuge. I’m outside my house. So secondly, it affected me personally. Being as an activist, I started receiving a lot of reports from survivors and victims of sexual violence so I'm traumatized with the level of rape cases that has happened.
CW: Wow. Well, I definitely want to speak more about some of those reports about the sexual violence but just getting back to you being personally affected, how do you know that the people who attacked your house were with national security?
EDMUND YAKANI: The vehicles that came to my house carry their symbol, to the uniform is their uniform and the vehicle is numberless and always that is the indicators of—if you want to know a national security vehicle, they move a vehicle which is numberless. So that is it.
CW: Why do you think you were targeted specifically?
EDMUND YAKANI: I think specifically that I’m targeted because of the nature of my work, being as an activist, being as a human rights defender. We are speaking out and are giving the accurate version of what's going on on the ground. So we become primary witnesses of the situation. And I think that's what the state doesn't want because people like us, speaking openly and giving life examples and testimonies on sexual violence cases and also giving testimonies on how our security [unintelligible] operates and how they target civilians and how they claim life of innocent civilians and how they get involved in looting. Those are the things that put our lives at risk.
CW: What are you doing to stay safe now?
EDMUND YAKANI: What I’m doing to stay safe is applying personal security strategies in way of dodging and minimizing possibility of falling victim to a national security [unintelligible]. So things like, I have to camouflage my identity during the day, walking with the caps, so that you are not seen as, “That’s Edmund.” So I have to impose on myself what you call self-curfew and also I have to become keen in the way of, with who am I interacting with. But of course, the guarantee is not there, to be honest.
CW: Where is your family now?
EDMUND YAKANI: They’re in Kampala because I'm worried that if they fail to get me, they might target my family. So my wife and my two kids are all in Kampala now.
CW: So tell me about what you've been documenting. What have you found?
EDMUND YAKANI: We have found incidents of rape and there's under 50—most of them in PoC 3, which is a protection site of civilians in UN. Well, I've talked with most of those women, 100 plus of them. I've interviewed him personally. And also, we have documented smaller scale cases of ethnic killings, where Nuers are targeted by Dinkas. And [unintelligible] at a very small margin, Nuer will target Dinkas in a hotel. So the ethnic elements are there. So we have seen it. And then of course, there's random looting that has happened in sort of like a very big area where it contained 50 per cent of the population of Juba. It's all documented and this all involve men in uniform. If you talk of the rape, most of it is government soldiers which were involved in the rapes, specifically as a militia affiliated to the government, [unintelligible].
CW: Are there any reports of mass rapes being carried out by opposition forces as well?
EDMUND YAKANI: We have not come across that still.
CW: So you've spoken to over 100 women rape victims. What are they telling you?
EDMUND YAKANI: Many are telling me about traumatizing moment where one, soldiers come to their houses and they rape them. And the incidents where some of them, they ran to refuge to a neighbour’s house and when they come across soldiers, the soldiers rape them. So they are really rampant cases of rape. Between 15 to 20 per cent of the rape cases, those are incidents where they run to the PoC, they have nothing to eat, they have nothing like, a source of fuel like charcoal or firewood. So they have to go inside for firewood because they can borrow food items from the other cliques in the PoC. So when they are going to search for firewood or looking for charcoal, then they come across soldiers and the soldiers rape them.
CW: So when South Sudan gained its independence in 2011, many people had high hopes for the new country. What do you think about what has happened since then?
EDMUND YAKANI: Personally, I've not regret by voting for independence for South Sudan. The only thing that I'm regretting for is I’m regretting for that we have gained independence but unfortunately we hand over our country to leaders who are having the same mentality and the same attitudes like where we have come from. So the hope that I will have, it’s really a leadership change. But as long as we still have these particular individuals whom we know in history, they are repetitions. That's the problem.
CW: A recent United Nations report found that a Canadian company sold dozens of armoured troop carriers to South Sudan in 2014 and those vehicles were later found to be operating in heavy combat zones in the country. What are your thoughts on this?
EDMUND YAKANI: It's a factual information because people like us, as activists, we are aware of the Canadian company engagement with authorities in terms of arms. Now we start asking ourselves why is such companies get engaged in supporting a military strength that is claiming the lives of innocent civilians and same time, also is destroying the little that South Sudanese have. We don't expect a nation like Canada, where it's a very democratic country, the private sector, or a company that is a Canadian owned company, they’re fueling the violence more. So for me, the question of irresponsibility is demonstrated by the company and I think the company need to be held accountable.
CW: What would you like to say to the Canadian government about this sale?
EDMUND YAKANI: Let the Canadian government hold this company accountable because that's really dirtening for us the image of Canada. Do really Canadian government care about the way how Canadian private sector like such companies operate in a country like South Sudan by fueling more violence and strengthening the capacity of a government that is really claiming the lives of its citizens. So for me, the message is that they need to take a position. They need to have a say on this issue. And my expectation for them to say is that they can hold the company accountable so at least we have our trust and our confidence on Canada.
CW: Well, thank you very much for speaking with us, Edmund. We really appreciate it.
EDMUND YAKANI: Thank you very much.
CW: Edmund Yakani is a human rights activist and director of Community Empowerment for Progress Organization. He was in Juba. The Current spoke with South Sudan's ambassador to Washington, DC, Garang Diing Akuong. Here is his response to the United Nations preliminary investigations that found that South Sudan's government security forces carried out killings and rapes and looted and destroyed properties.
The report is not accurate. We believe maybe some excesses happened during the fight but that is not the practice or the norm of the government of South Sudan to allow the soldiers to rape or loot. During the fight, you cannot say that this is absolutely, this is the government soldiers. If it is just a matter of somebody wear a uniform, the soldiers of the rebels and the government wear the same uniform. But we are investigating. The government has apprehended some soldiers and they will be accountable for whatever they did.
CW: That was South Sudan's ambassador to Washington, DC, Garang Diing Akuong. As you heard, a United Nations report found that a Canadian company, the Streit Group, sold dozens of armoured vehicles to South Sudan back in 2014. For more on the Canadian aspect of this story, I'm joined by Paul Champ. He's a human rights lawyer with Champ and Associates. Paul Champ is in Ottawa. Hello.
PAUL CHAMP: Good morning, Connie.
CW: Good morning. Paul, what do we know about the sale of dozens of armoured vehicles to South Sudan in 2014?
PAUL CHAMP: Well, the numbers are actually higher than that, Connie. It's over 170 armoured personnel carriers manufactured by the Streit Group that are alleged to have been sold to South Sudan. The United Nations has investigated and it reported publicly a few months ago that they were concerned that these armoured personnel carriers were sold to South Sudan in 2014, which as we know was, you know, right in the midst of a brutal civil war where, you know, all kinds of atrocities were being committed by government forces and rebel forces.
CW: So are Canadian-owned companies legally allowed to sell armoured vehicles to South Sudan?
PAUL CHAMP: Well, I know the Canadian government on this sale have been saying that well, export control laws don't apply to this sale because the Canadian company in this case, manufactured these APCs in another country, that is the United Arab Emirates. But there are other laws that apply in this case because there are international sanctions against South Sudan that prohibits the sale of any kinds of goods including military goods to the government army. And so, in this case, the fact that a Canadian corporation anywhere in the world manufactured and sold armoured personnel carriers to the South Sudan army could be in violation of those international sanctions which have been implemented into Canadian law. So I think there is a live issue here to whether Streit Group has violated the South Sudan regulations in Canada.
CW: So what do you recommend happens to determine if that was the case or not?
PAUL CHAMP: Well, you know, there's a real open question here about what the Canadian government has done up to this point. You know, should it be up to the UN panels to be looking into this kind of an issue? Obviously, but where has Canada been over the last couple of years? I think now that this information has been public, I think it's incumbent on the Canadian government to investigate and inquire into the circumstances of these sales and determine whether Canadian law has been breached.
CW: Okay, let's get to the vehicles. Can you describe the vehicles and what their intended use is?
PAUL CHAMP: The Streit Group manufactures a number of armoured personnel carriers. They're not quite tanks but they're heavily armoured. They usually have a turret on the top where a soldier or someone can be using a machine gun from that turret. That keeps them protected from arms fire when they engage in conflict. So that's the kind of vehicle that we're talking about here.
CW: So the CBC's Murray Brewster reported that while the company's internal shipping records showed that the vehicles were officially sold to South Sudan's interior ministry to be used for policing, that may have just been on paper. The vehicles were approved by a general in the defence department. How much do we know about what the armoured vehicles have been used for?
PAUL CHAMP: The report by the UN, earlier this year, does not speak to exactly how they were used. They just indicate that they were sold to the SPLA, the military. Regardless of what's on the contract, it seems clear that they were sold to the military. In terms of their specific uses, well, we don't have evidence of what the specific uses, or haven't had any documented reports of the specific uses, but you know we have heard, obviously, there are many reports by many credible organizations about the kinds of abuses and atrocities that the South Sudan army have been implicated in.
CW: So we requested an interview with Stephane Dion, Minister of Foreign Affairs, but he was not available. The Department of Global Affairs sent us the same statement they sent to CBC reporter Murray Brewster. It reads, in part, “The government has committed to strengthening Canada's trade regime and acceding to the arms trade treaty. The government of Canada has no record of any applications for permits to export military goods including armoured personnel carriers to South Sudan. The Canadian government has also announced measures to provide more rigour and transparency for Canada's export controls system. What do you think of the Canadian government's response to this story?
PAUL CHAMP: Well, I mean, that's great rhetoric but I think we need to see it followed up with in practice. You know, these are specific allegations that aren’t simply being made by the CBC, this is a United Nations report and I think it's incumbent on Canada to look into them and I think it's unfortunate that Canada, the Canadian government didn’t at least indicate that they are investigating this matter because I think it is a matter that needs to be investigated or alternately, they can say we've investigated and we've cleared the company. We're satisfied that they did not violate the sanctions regime. But either way, I think that if Canada is going to, you know, maintain its credibility on these issues, they need to be saying more than just the right words. They need to be taking actions.
CW: So the government has also said legislation on this issue is coming in the fall. Do you have faith that the government is going to prevent sales like these from happening in the future?
PAUL CHAMP: Well, you know, we'll see. You know, with respect to Canada's export control regime as it stands now, they'd like to brag that they think they have the strongest export control regime in the world but I'm not sure if the evidence shows that. When you look at the, you know, the US legislation, it's a lot stronger and frankly, we haven't seen any prosecutions of the sale of military sales ever as far as I know. Whereas you know, for example, the Streit Group again, its American subsidiary was prosecuted for the improper sale of military goods without proper export certificates and authorizations just a few years ago and they were fined over $3 million. So, I mean, will Canada follow through in action? I think— you know, I hope so and I think many people hope so. There's a lot of groups out there ready to hold them accountable but as of yet, we have not seen action backing up those words.
CW: Thanks. Thanks so much Paul.
PAUL CHAMP: Okay, Connie. Thanks again.
CW: Paul Champ is a human rights lawyer in Ottawa. We requested an interview with the Streit Group but we did not hear back.
CW: Now, get ready to be disrupted. Starting this September on The Current, we'll be launching an all new season long special project we're calling The Disruptors. Whether they're from the worlds of politics or technology, commerce or philanthropy, we'll be bringing you stories of disruptive change. We'll hear about the next generation of companies in Silicon Valley aiming to be the next big thing and disrupt the way we live, work and play. And we'll hear from the first majority Muslim city in the United States—a microcosm for the fears currently disrupting that nation. And we want to hear from you too. Send us your personal moments of disruption. Whether it was an illness, an eviction, a lottery win, something you didn't see coming but which changed your life's path. Just go to our website cbc.ca/thecurrent and follow the contact link and be sure to put personal disruption in the subject line. The news is next. Then it's our documentary, Mind and Matter. We'll meet a New York man who had the unique and sometimes terrifying experience of not only losing all of his memories but to have them all come flooding back. I'm Connie Walker and you're listening to the summer edition of The Current.Back To Top »
ENCORE: How a man with a brain tumour rebooted his memory
CW: Hello, I'm Connie Walker and you're listening to the summer edition of The Current.
CW: It's estimated that some 55,000 Canadians are living with brain tumours and every day, 27 more people are added to that list. A diagnosis can be devastating, even when the tumour discovered is benign. And for those non-cancerous tumours, experts say there has been a paradigm shift in the approach to treatment. For years, the philosophy was to remove the tumour entirely. And while that’s still done sometimes today, the procedure poses big risks. It has the potential to leave patients blind or permanently brain damaged. So increasingly, surgeons are doing minimally invasive methods to reduce these benign tumours rather than destroy them. Today, we bring you the story of New Yorker, Demetri Kofinas, who was diagnosed with Craniopharyngioma in 2009. He was 28 at the time and we begin this story the day he learned of his brain tumour. This is Leif Zapf-Gilje’s documentary, Mind and Matter.
DEMETRI KOFINAS: I went in for an MRI and a tech there, after the MRI was over, I was walking to leave, and he goes yep, it's definitely Craniopharyngioma. And I was like huh? I mean, just like that, he just said it. It almost sounded like me sort of discovering a problem in some sort of machine that I was using or something where I was really excited to find a bug that I could fix. He sort of just came across this image and as if he was just excited to see a very rare tumour in my head.
ALEXANDER KOFINAS: I am Alexander Kofinas, Demetri’s father. In reality, there were not too many options. The options they gave us were very unwanted, unpleasant, fearful. Two choices existed then. One was to open up the skull and kind of lift off the brain, lift up the brain a little bit with metal instruments, which invariably, they can damage the brain, they can damage nerves, they can do different things to you, leading to complications that would be lifelong, such as loss of vision, loss of hearing, and of course, traumatic injury to the brain that can affect mobility and so forth. The other choice would be to go through the nose. And of course, in order to do that, to get to the tumour, you have to sacrifice the pituitary.
DEMETRI KOFINAS: Both of those procedures guaranteed that I would lose all of my hormone production from my pituitary, which meant loss of testosterone, loss of growth hormone, anti-diuretic hormone. I can't, I mean, I can't list them all right now, but it would have been very difficult to live that way. You know, you're discovering it now as an incidental finding. It's not causing you any symptoms. And it may never cause you any symptoms. So just because you discovered it doesn't mean that you should do something with it.
ALEXANDER KOFINAS: You know, I’m a surgeon myself and the mentality we have—as they say, give a surgeon a knife and he's going to take out anything you have—and Demetri made a choice that I agreed fully with him. That we're going to sit and wait.
DEMETRI KOFINAS: It's difficult to look back at just how painful it was to live that way.
ALEXANDER KOFINAS: It's like, you're in your bedroom and you have a tiger in the corner and you never know when he’s going to really attack you.
DEMETRI KOFINAS: So that terrified me. I had become very depressed and it was more of a—how would I describe it? I fell apart. I was really unclear about what the point was of anything that I was doing because I didn't know what I wanted to do in my life if I didn't know how much time I had. Do I have six months? Do I have five years? Do I have 50 years? How much time do I have? And depending on how much time I have, that's going to affect what I want to do with my time. I was immobilized.
DEMETRI KOFINAS: I spent a year, sort of, almost a year stumbling and this opportunity opened up.
REPORTER: Thanks very much for joining us, Mr. Kofinas. Now the pictures...
DEMETRI KOFINAS: I was in Greece for a wedding at the time and this was when there were a lot of riots and Greece was in the news and I got a call from RT International saying, would you want to come on air to discuss the latest happenings in Greece and—
REPORTER: …from Greece to make sense of all of this is Demetri Kofinas. He is on the ground in Greece…
DEMETRI KOFINAS: The next couple of days I did 11 interviews total, live—
DEMETRI KOFINAS: I think that the markets have not priced in a Greek default.
DEMETRI KOFINAS: And it was amazing. I was completely unqualified by any normal measure, but I had the passion and I had the drive and I had the confidence. After those two days, I was given one offer to create a show, a finance show. That to me was like, wow. That's it. That's what I want to do. I couldn't have been happier.
DEMETRI KOFINAS: Not a single day passed, when I was in Washington, DC, when I was not acutely aware of my mortality. And I knew that working as hard as I was working—just everything that I was doing was not healthy. In fact, I remember having a conversation with a friend of mine who told me, you know, you really shouldn't be doing this because it’s just unhealthy in general. And I said, you know what, you're right. You're entirely right, but I don't care.
MONA ZUGHBI: He was writing the show, booking the guests for the show. It was just insane. I’m Mona Zughbi. So when I met him, he was just sort of in that mode of, like, I can do anything and everything and my show is so awesome. And he was just like the man on campus, if you will.
DEMETRI KOFINAS: I didn't become aware of any symptoms until I got back to New York. My grandfather died. When I was on my way up from Washington, DC to New York and I had forgotten about that. I had our plane ride to Santa Monica that when I was on the flight, I forgot where I was going.
MONA ZUGHBI: He started exhibiting a lot of forgetfulness. And he completely was just—to me, he felt like he was a shell of himself.
DEMETRI KOFINAS: Things seemed weird. Concepts were weird. I give an example of a giraffe and this was actually a real example of one of many different cases where a concept, like a giraffe, in my mind, it didn't make sense. It felt weird. There's something really weird about a giraffe. I knew that it was an animal with a long neck. But what was an animal?
ALEXANDER KOFINAS: It became really devastating. He could not hold a discussion. He could not make any sense of things. And we realized that he was lost. He would go—he was looking for an apartment, for example, and he would have an appointment with a broker and he would forget to go. Or he would meet with a broker and see the apartment and then after a while, he would call him back and say hey, I mean, when am I going to see the apartment? I tried to convince him to go back for a follow-up MRI, but he wouldn’t take it. It was a two-week, maybe three-week period that eventually, we had to forcefully call a family meeting. And we convinced him that he's going to have to go for an MRI to see what is going on because I told him, you know, it's very likely with this symptoms you have because of the tumour expanding. So he agreed and we went for this MRI. The news, of course, was not good. The tumour had more than doubled, so that expansion of the tumour started compressing the structures of the basic brain, of the base of the brain rather, all channels and areas that the memory process is going through and without them you can't—depends on the level of damage, you may not be able to make memories at all or you make memories but you cannot recall them. And that is the case of anterograde amnesia. You stop remembering anything going forward. Whatever happens to you from that moment on, you don’t remember.
DEMETRI KOFINAS: And after that, my father handled everything. He’s both a physician and obviously I was not in a condition to make appointments or really understand what I was doing, so he reached out to some friends and they gave him some names.
ALEXANDER KOFINAS: And so we made an appointment. And it was really the first time that I saw some light in the tunnel.
DR. JEFFREY GREENFIELD: My name Jeffrey Greenfield and I am the neurosurgeon that operated on Demetri. The typical approach puts many, many crucial structures at risk and damage to those structures occurs at a very, very high rate. Conversely, when you go through the brain, if you know the anatomy well and you map out your trajectory well, you can actually take a very, very safe trajectory through the brain and approach the lesion from the backside, sort of sneaking up behind it.
ALEXANDER KOFINAS: He told us, the surgeon Dr. Greenfield, that he doesn't expect any complications. It's basically a procedure that, yes, it is invasive, but it is minimally invasive and does not cause any damage because you open up a little hole in the skull and you put a probe through the brain. But the brain is like a thick—a thick bush, for example. You can push a stick through a bush without breaking any branches or any leaves. It was an amazing moment. I immediately felt a tremendous relief and confidence that Demetri will be fine. Demetri could not understand that yet.
DEMETRI KOFINAS: ‘Course, I didn't understand it. Even if I didn't have dementia, I would have been initially, sort of, shocked because I didn't know you could pass through the brain without hurting it.
ALEXANDER KOFINAS: I mean, what we saw was not just that, okay, this is another way of doing things, but there was a human touch in the communication. We connected with the other surgeons we saw. [voice catches] People don't realize how—even physicians don't understand how important is the trust between the patient and the physician.
DEMETRI KOFINAS: What was most terrifying was that I might lose everyone. I might lose myself also. And I had already been losing myself. I'd been losing my mind. So I had, sort of, I had a fear about being lost in sort of eternity, sort of, just falling into darkness.
ALEXANDER KOFINAS: I was waiting outside of the intensive care unit until they came and told us that Demetri was back.
DEMETRI KOFINAS: As I was sort of becoming conscious, the first memory I had as I was being positioned was this pain in my head. And immediately, I was like, oh, brain surgery. [chuckles] And the only reason that I was able to do that was because this pressure that was on my hypothalamus and on my cognitive areas of my brain had been alleviated. So I was able to think. And, you know, I immediately thought, oh, you know, pain in my head. I had surgery. And I looked at my dad.
ALEXANDER KOFINAS: I told him, you know, something and I don't remember exactly what was the statement, but—
DEMETRI KOFINAS: He said Demetri, it was great. He was great. Greenfield completely collapsed the cyst and he actually saw the hypothalamus pulsating. And I sort of looked at him and I said wow. He saw the hypothalamus pulsating, really? And my father was just silent. I mean, he was silent. His tears—his eyes began to well up. And he looked at my mother and he said did you hear what he just said?
ALEXANDER KOFINAS: And I said, oh my god, Demetri, you’re back. And I started crying because I realized that he was back. Indeed.
DEMETRI KOFINAS: For him to see me understand immediately that the pulsation of the hypothalamus meant—I immediately understood what that meant. I said oh, it was pulsating. It means that, you know, there was blood. There's a resurgence of blood. That means, you know, it's working.
ALEXANDER KOFINAS: I mean, I don't think that there are enough words in the dictionary for me to express my gratitude and relief and excitement for him being back and being my Demetri the way I knew him, with his energy and the intelligence and his ability to think.
DEMETRI KOFINAS: I would just be sitting in my hospital bed and memories would come back. And as they dropped there were like, it was like rain. I describe it like rain. It was like pieces of my life were just dropping like rain droplets.
ALEXANDER KOFINAS: He was just pouring and pouring, and telling me things and how they were happening and he says, you know, dad, it’s like I have this pipeline downloading stuff to me.
DEMETRI KOFINAS: I mean, that sort of intense period was for the first sort of, 48 hours, you know, 72 hours. That's where I really did that most intensely. It was scary getting memories back because it showed me that my memory wasn't perfect and that I had forgotten all this stuff.
DEMETRI KOFINAS: When I got home from my surgery, it was an incredible experience. I got home, well, to my parents' house and I had been to my parents' house before my surgery when I got back to New York. And I, for example, would forget the garage code, wouldn't remember how to open the garage. And when I got home from the hospital, I opened the garage. I mean, I have to tell you, the experience of having things like that happen, it was surreal. It felt like the boy who could fly.
MONA ZUGHBI: I was actually super excited for him to come back into news. So I made the crazy assumption that he was coming back and he was like oh no. It seemed to me he was more tapped into the things that he really genuinely loved, like the arts.
Where goes Cesario? After him I love. More than I love these eyes, more than my life, more than…
MONA ZUGHBI: Now he has his own production company and he's producing off-Broadway plays.
DEMETRI KOFINAS: We have a particular approach, which is, we take from actors, improvisers, comedians, and musical performers.
VOICE 1: Like that?
VOICE 2: Yep.
VOICE 3: Perfect.
VOICE 2: Alright, ready? We’re quiet backstage.
DEMETRI KOFINAS: And that makes the performance very different.
VOICE: And act five. Go.
DEMETRI KOFINAS: Right now, we're focusing on Shakespeare because well, primarily, you don’t have to pay.
ALEXANDER KOFINAS: Seeing him with all these-- I mean, he has this renewed urgency on his part to create and his experience has made it a lot more passionate for him.
DEMETRI KOFINAS: I had such an amazing life as a result of the fact that I had to confront my mortality. I know that death is not just a theoretical thing. You know, it's really actually something that happens to us and understanding that and living your life that way, it really frees you and it's enabled me to do things that I think I never would have done.
ALEXANDER KOFINAS: I'm extremely excited. I’m unbelievably excited by this whole thing. I can't—I absorb it, I live it. I mean, I enjoy every moment. I enjoy every moment because I thought that would never back again. You know, I can’t tell if it is as great as when he was born. And I think it is greater because I did not know him before he was born, but then I knew him and I lost him. He came back.
CW: We've been listening to Mind and Matter, produced by Leif Zapf-Gilje. It originally aired last January. The Current’s documentary editor is Joan Webber. That’s our program for today. And finally, after our documentary Mind and Matter, let’s leave things off on a musical note about the strange world of memory. This is the Talking Heads’ with “Memories Can’t Wait.” I’m Connie Walker. Thanks for listening to the summer edition of The Current.
[Music: Memories Can’t Wait – Talking Heads]
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