Berlin - Syd Atlas was born in Brooklyn. In 1994, the actress and director moved to Berlin where she fell in love, married and had a child. Her life took an unexpected turn when her husband developed the rare, incurable disease ALS (Amyotrophic Lateral Sclerosis). In her new book Das Jahr ohne Worte (The Year without Words), she writes about the diagnosis, living with the disease and existence after her husband's death. 

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Berliner Zeitung: What was it that brought you to Berlin from Brooklyn in the wild 1990s?

Syd Atlas: Pure chance. I grew up in Brooklyn. Later, I studied theatre at Brown University. I wanted to see the world, so I decided to do an exchange in London. I had a great time there and wanted to stay in Europe. An artist friend came to me and said I absolutely had to go to Berlin. I didn't know German, I didn't know the city, but it sounded so exciting. That was in 1994. I packed my things and moved to Berlin. That's how my new life began.

What was it like back then in Berlin? How did you get by?

At first I did a lot of odd jobs. Then I happened to become a director at the Theater im Tacheles, today's HAU. I simply said "yes" to everything. If you say "yes" more often, more happens in life. That was the beginning. In New York, people didn't yet know that Berlin was so great. I lived in Prenzlauer Berg. The district wasn't as cool as it is today. There was only one café at the water tower where you could drink good coffee. No one spoke English, not like now when no one speaks German anymore (laughs).

Photo: Carsten Koall
Syd Atlas

Syd Atlas was born in Brooklyn, New York. She studied theatre at Brown University and began working as an actress and writing solo shows. In the mid-1990s she moved to Berlin. Atlas has been coaching managers as a rhetoric and communication trainer for more than ten years.

How do you like Berlin compared to New York?

Berlin is not like New York. That's not what Germans want to hear, but it's not. I can name the difference exactly: people move to Berlin from their small towns to be left alone. People come to New York from their small towns to make contact. That's the difference!

And now you live in Berlin-Schmargendorf. Why?

Because of my husband. Before he was diagnosed with ALS, we lived in Schöneberg, on the fifth floor of an old building. But the building was sold. I overheard that a flat in Schmargendorf was available. It was beautiful and I accepted immediately. I now think it's great here! Sure, it's not hip. Being hipster in Schmargendorf means something different than being hipster in Mitte. You're a hipster here if you still maintain your own hipness. Hip is hip. But I like it now. You can quickly get to Grunewald.

Your book is a very intimate account of your relationship with your husband, about his ALS, the discord between the two of you. It's about love, separation, death, despair and ultimately forgiveness. Why did you write it?

From the moment of the diagnosis until my husband's death, so much was going on. I had no time or space to reflect on my life. I was able to do that through  writing. It was very liberating.

How did you fall in love with your husband?

That was in 2004. He was insanely good-looking, a bit like Steve McQueen. He was confident. He had a great voice. And above all: he had a sense of humour. He played with words and thoughts. Even in the worst time, when he could no longer speak, he kept his sense of humour.

You had a child from a previous relationship, right?

Yes, and then we had a child together.

You write that you were happy together. He was the man of your dreams. You would have loved to spend the rest of your life with with him. But then came the ALS diagnosis. When was that?

15 January 2013.

Can you talk about that day?

For that, I have to travel back to 2012. My husband came to me one day and said, "Honey, I can't speak anymore." After a few months, while I was on a work trip, at the end of December 2012, he went to the ear, nose and throat specialist. I came home, greeted him and he said, "I have ALS." I didn't know exactly what that was. I looked at him perplexed. He replied, "It's what Stephen Hawking has." And I thought, "Oh, he's exaggerating!" He was known for being a hypochondriac. Then we went to a clinic and the doctors weren't quite sure what he actually had. So we still had doubts. I organised an appointment at the ALS outpatient clinic at Charité. We met the head doctor. He looked at my husband's hand, then he looked at his tongue, and immediately said: "I would say ALS, first stage." I was so unprepared! That came after 10 minutes of talking. There were no more tests. The doctor just said, "First stage." I cried. My husband was quite composed.

Cover-image: Rowohlt Verlag
Syd Atlas: Das Jahr ohne Worte, 256 pages, Wunderlich Verlag, 2020, €20.

What do you do after a situation like that, after you've been handed a death sentence?

We went outside, it was cold. And then the idea came: "Let's go to KaDeWe, drink champagne, order oysters." We cried in public, kissed, drank to life and love and asked ourselves: "Is all this really happening?" We suddenly knew: we are in this new life now. It was unbelievable.

Could you fathom at that point what the diagnosis meant for your life?

Yes. But I thought to myself, "Okay, that's only one diagnosis. We need three diagnoses before it's really true." At first we were still incredulous and had a bit of hope that other doctors would come to a different conclusion. We wrote to people abroad. We built up a network worldwide. We heard esoteric stories about people who were mortally ill and suddenly recovered. At that moment, we had nothing but belief in a miracle.

People diagnosed with ALS don't have any chance of survival, do they?

That's right. People who have ALS have a lifespan of about three to five years after diagnosis. The disease is fatal and incurable. My husband also had a rare form, bulbar ALS. For him, it started with his mouth. After a year, he could no longer speak. First, he had no feeling in his tongue and then he had problems swallowing. That's why he had to have a stomach tube. Later he couldn't breathe either and had to have a tracheotomy. Usually people have problems with their joints first, difficulties walking or something like that. With my husband it was different.

What is stronger at a moment like that: fatalism or hope?

I felt hope. My husband was not fatalistic, but he was medically well informed and realistic about the future. I was more of a "let's try a lot of things" type. I wanted to motivate him to do things. Big trips, for example, seeing friends. I was aware that he was going to die someday. I just didn't know how and when. I thought at the time that we would have a little more time. At some point the second and then the third diagnosis came, then everything was clear. We wanted to make the most of our time. We got married, went on trips. We also hardly told anyone about the diagnosis. We only told my family and our children after our son's seventh birthday. That was June, six months after the diagnosis. That's when we felt, "It's real."

Could you function during that time? Have a daily routine? Think clearly?

Yes, especially at work. I was able to concentrate on other things, which was good. I now work as a coach with managers on their communication, their body language, their stories. It got particularly bad when my husband slowly became unable to speak or move. He had to use a mobile phone to express his thoughts. He typed what he wanted to say into the keypad. Funnily enough, he chose an electronic British female voice to read out the sentences.

You describe how the relationship with your husband slowly changed, became more problematic. When did the turning point come?

The turning point came after the operation, the stomach tube and the tracheotomy. My husband was hooked up to a device for 15 hours a day, later even 24 hours a day. The fact that people were constantly around us, that we always had to call an ambulance, and that I felt less and less of the man I loved - it was all very sad and hard to bear. I remember very well: I lay down in bed with him, there were machines all around us. A machine beeped loudly, a nurse came into our room, turned on the light and bent over me with a tube so she could suction the area around his tracheotomy. That night I thought to myself, "There's no turning back now."

Can one get used to such a state? Can you sleep through the night?

You get used to everything. Even to terrible situations. But really letting go? That's hard. Was I able to sleep freely? No. I was terrified of was going to happen to my husband, to my children. I asked myself, "How am I going to keep us all afloat?" I listened to podcasts every night. The voices lulled me to sleep.

How did your love develop after your husband could no longer speak and breathe on his own?

It was difficult to still feel like a couple. When you get very ill, new people come into your life all the time. Occupational therapists, doctors, nurses. Suddenly there is no longer an exclusive "us". There was always someone in the room. That makes it hard to build intimacy. For us it became more and more complicated.

You describe your husband's frustration, anger and sadness he developed because of his condition - also towards you. You had to comfort him emotionally a lot, didn't you?

Yes. He was under enormous pressure, of course, no question. He was fighting for survival. I often had the feeling that I was standing between two chairs. Once my husband put our son to bed and saliva came out of his mouth. Our son got a fright and cried. Suddenly, I saw my husband sitting in the kitchen grunting. That was his frustration! I could understand both of them, my husband and my son. We were all desperate.

The frustration grew. Also on a physical, intimate level. Your husband could not accept that you no longer wanted to have sex with him.

The physical also plays a big role, yes. The disease changes the body. Of course, that also impacts sexuality. For me, sexuality was over once the devices came. But I think you can understand both me and him. He used to say, "I'm still the same." But I don't know if that's true. When you act differently, speak differently, smell differently, look differently, when everything is different - are you still the same person? That is a difficult question.

One of the key scenes is when you want to talk to your husband about his death. He believed that you wanted him to die.

This is a complicated scene in the book. I'm not a heroine. I did my best and didn't deliberately do anything wrong. He didn't have a living will. And I really wanted him to fill it out. I wanted to talk about dying. How can one die well? Maybe that question wasn't sensitive enough. But he thought I was against him and that I wanted him to die. Even though we cleared that up later, this misunderstanding weighed on our relationship like a boulder.

Your husband found a contentious way out. He had two affairs.

Yes. That was quite late in the relationship. I was really at my wits' end. I remember one day he texted me, "I need to talk to you. I want to move out." And I thought to myself, "What does he mean?" He said it was better for him and for the family. I couldn't believe it. When he was at the doctor's, I did something you're not supposed to do: I looked in his laptop and saw some messages. I knew then that he was having an affair with two women. I immediately recognised who the women were. I was shocked and speechless. I remember falling on all fours and thinking I had to get up because my children could have come back from the playground at any moment. The next day I confronted my husband with the news. And then, a few months later, he moved out. Four men came by to pick him up. I decided to keep visiting him. I thought I had to. I wanted to know why he did it. I wanted him to e-mail me and explain everything. But he never did.

Can you somehow explain his anger and disappointment?

I don't know. Some say that in ALS, the part of the brain that is responsible for judgement changes. I sometimes think about how when you have this disease, it's like you're a passenger in a car and there's only one direction - towards the cliff, towards death. The car is only moving forward. You want to feel that you can somehow steer the car, with your hands on the steering wheel. It doesn't matter whether you turn it to the right or to the left. Maybe that's what my husband wanted: to steer. But as I said, I don't know. This book is clearly my story. It's my perspective. So I can't say what exactly he was thinking.

How did you get your life back on track?

The most important thing for me was to forgive him. I heard a hospice director on the radio say that there were 11 words you have to say to find peace: "Please forgive me. I forgive you. Thank you. I love you." I did that - on 29 July 2017. My husband could only move one eye at that point. He was still there. He was responding. A tear even came out. I opened his hand, which had a flannel stuck in it, and put it in mine. We had a good life together. He hurt me deeply. But I know it wasn't intentional. He was not a bad person. My book is not about good and evil. Rather, it is about two people trying to have a love story with each other. I'm sorry I couldn't be the person he needed me to be. I wish I could have been.

How long did your husband live after that moment?

He lived for another year and a half. And the children and I visited him regularly.

When you experience something like that, how do you manage to cope with your fate?

This fate is now part of my story. I am not a better person just because I have experienced something difficult. I am nothing special. I just want to show that you can survive more than you think. That really is true. You can get through a lot. When you have children, you have no alternative. You just get up. The optimism in me is on fire. I don't know where it comes from. You're on a certain track and you're going in a certain direction. And at some point you get thrown off the track and you end up on another path. But you can get up again. And then a new life begins.

This interview was conducted by Tomasz Kurianowicz.

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