Can anyone's eyes speak

Interview with Angela Jansen

• Angela Jansen is in bed. A small terrier rages around the apartment. Over the bed, over the woman. Again and again. As if she wasn't there at all. The 55-year-old suffers from irreversible damage to motor neurons, nerve cells that are responsible for muscle movements. The disease is called ALS - amyotrophic lateral sclerosis. Nobody can really explain the cause. One muscle at a time in Jansen's body was simply switched off one by one. Without anyone being able to do anything about it. Without anyone telling you why. Angela Jansen is one of three to eight cases per 100,000 people who experience this nightmare. For twelve years she has been dependent on a ventilator, seven nurses and helpers. She communicates using the movements of her left eye, using it to control her office, the writing program - practically her entire life.

brand eins: How are you today, Ms. Jansen?

Angela Jansen: In good health, thank you. It's good form to be a little cold. I'm just at war again with the German bureaucratic attitude. With my lawyer, I am trying to make the authorities a little more flexible in the cervical vertebrae. To nod.

Are you even allowed to be asked such a question, the question of how you feel?

Why not?

It might sound cynical to you.

Oh, people always think you have to be terminally ill with ALS. I forgive those who move. They always infer the immobility of the head from the immobility of the body. That is also the problem with the authorities. They simply cannot imagine that such a severe disability, i.e. being paralyzed and ventilated, leaves the head completely out.

Do you think they are not sane?

Because of the paralysis, I can no longer sign. That is why the law provides for a supervisor. For signing. The offices also follow the dusty guideline that things, for example my care - can therefore no longer be discussed with me as a responsible person. You conduct all correspondence through my supervisor. As a normal, mature adult, I can actually only navigate the Internet.

Is it exhausting to write with your eyes?

Not for me. Only light backgrounds are exhausting. They make PC work so exhausting. But the Eyegaze - my writing program - is black, and so my carers have to endure my chatter for almost 20 hours a day. Do you want to try it out?

Yes, sure.

Then we have to call Kati quickly. It can adjust it for you. Wait a second.

(Angela Jansen writes a text message with her left eye.) This is how texting works. Awesome, isn't it?This short conversation lasted just under an hour. The situation takes getting used to. You're not looking at the face of the person you're talking to, but at a screen.One reads what has been said letter by letter. There is also a language program, but that plastic voice is even stranger. We agree to read along instead of listening.Angela Jansen says she is healthy like everyone else - she just can't move. It divides people into those who move and those who do not move. She has a coffee brought to her. It is slowly pushed with a syringe into a tube that goes into her body. This body has become a cocoon for them. She is trapped in herself. Can't go anywhere on my own because of that. Would suffocate without the ventilator. She was once a passionate dancer. Now it is a kind of living sculpture.You sit by her bed, in her room - and feel insecure. You can read the screen, but not her face. That shows no reaction, no smile, no frown. The same goes for the body: no leaning forward or leaning back. A motionless person whose left eye is writing. You have to be patient with it, have it written out, keep your own thoughts and words for a long time. The neck soon hurts from constantly reading along. Angela Jansen says that is the problem of being able to move.Your bed is a mixture of an intensive care unit and a multimedia office. A ventilator puffs. There are two screens in front of her. Word, Powerpoint, Skype, SMS - she can control all of this with the movements of her left pupil. Later, when we say goodbye, she asks if she should print out our conversation - and does it with the blink of an eye.Your daughter Kati arrives. Their little terrier rages around the apartment again. About the bed, about Mrs. Jansen. Again and again. As if she wasn't there at all. Before her illness, Angela Jansen worked as a dispatcher in the logistics of the British armed forces in Berlin. She is a trained teacher and a single mother. Before the daughter moves the eyegaze away from her bed, Angela Jansen writes:
"Now it's your turn. And don't fidget!"Then your screen is turned towards me and the integrated camera is aimed at my pupil. A letter field appears. The cursor moves wherever you look. You stumble through the alphabet. If the gaze rests on a letter for more than 0.7 seconds, it has been written. Angela Jansen is three times as fast as me. "A-U-G-E-N A-U-F I-M S-C-H-R-I-F-T-V-E-R-K-E-H-R" - a wonderful concentration exercise. You have to forget your body, you have to do without hands and feet, without facial expressions and head movements. Don't fidget. Just look.

Can you remember when you could speak?

Reluctantly. I remember how the language became more and more slurred, my impatience grew, and of this helpless freaking out when the others did not understand you. Worst of all was the realization that the earth kept spinning mercilessly, regardless of whether I was about to make a funny remark. I wasn't used to such arrogant ignorance. It was a horrible thing to learn. Nobody cares that my royal words weren't there at parties - but I certainly did. That was a terrible time.

Do you remember the sound of your voice?

It's on some video. Although you always find your own preserved voice appalling, I would describe it as sympathetic. Today, with the distance.

When was the last time you spoke?

Twelve years ago.

Have you changed during this time? They say yes, it is only the body that is sick.

I feel the same My kids say I've changed. Of course I learn a lot. Before, I have never been in situations that annoyed me. Nose up and turned on your heel. I was gone. It does not work anymore. Although I wasn't considered arrogant, from my point of view today I find it very arrogant to just turn on the heel like that. I never had patience. I really had to learn that bitterly. Or be angry sometimes. Coloring your voice arrogant, derogatory, admiring or sexy - nothing. I'm already looking forward to a computer voice that says 'asshole' in such a magically sour way. I mean that says a lot ...

Was there actually that moment when time stood still? Were you trapped in your body from now on, that day X?

No. There is no such day at ALS. But over the years you have to give up an inch of your mobility, your autonomy and your usual pace of life to the disease every single day. Every day. They don't know what ALS will take today. They only know: again today. It's like slowly growing into yourself. The only things you can keep with you are your head, soul and feelings. And the hope that ALS forgets to pick something up ...

Is it better not to ask now what the disease has forgotten, so that it does not lead to stupid thoughts?

Yes, yes. Nothing can happen to me anymore. I am paralyzed and ventilated - this is called "ALS in the final stage". Nothing happens to me anymore. That kind of makes it easier.

Okay, so where did she go wrong? What is left?

I can still move my feet very little. I can still swallow with my tongue at the very back, and the facial muscles that are essential for facial expressions have remained.

Does that still allow any kind of free space?

Free spaces are my "I'll show you". My head has become my greatest freedom. My thoughts. Refusing me is my freedom. Not to be sick and to enforce it is freedom. Moving on with the disease when something bores me gives me freedom. It's all so reduced to the real values ​​through the illness - isn't it? Which person in motion sees it as free space to be able to think?

And what can you do with thinking? Can you get through the day with it?

Thinking is a good way to get through the day. I also have the Eyegaze and the PC - I set myself up with them. From time to time there are still people - a little cynical joke ...

The amazing thing is how Angela Jansen brings her personality to the outside, even though this personality is also enclosed in her body. So she tried to stay in the world as a person. Founded an association, went to Paris, paints - using software that can control her through brain activity. Maybe she'll be moving to a gallery for a few days soon. She has already been to the theater with her body. Christoph Schlingensief - she only calls him CS with the initials - brought her onto the stage.

Did you have to think about it for a long time?

Nope, when CS asked me, I immediately accepted. I wanted out. What to do. Getting a ball rolling. Of course, it all happened in your stomach at first. What I wanted was to participate. Stage. Äktschn ...

And how was it then on stage?

HOT !

But first you had to go there. How?

Out of sheer caution, I was transported lying down, laid in another bed at the stage entrance and then pushed to the stage. In the middle of the scenery! But it wasn't yet what CS had in mind. The next day of rehearsals the bed was in the middle of the auditorium! Ooookäiii, I thought - you can do that too.

Wasn't such an action a great risk?

Risk? What kind of risk? I've been asked this a lot and still don't understand the question to this day. What should I be afraid of? That I'm falling out of bed Break my neck? Maybe I am paralyzed? I have everything like that too.

And the people - how did they react?

They were a hit! Totally insecure. Looking embarrassed in a different direction, at the floor, at the ceiling. And that was DIFFICULT! The great theater hall. 500 seats. Dim light - and I in bed, IN THE MIDDLE! A spot right on me. Stage empty. Illuminated dimly. It was just IMPOSSIBLE not to look at me! But people can do that too. Look the other way when you look. A few came and looked to see if I was real. They searched desperately for this supervisor and then inquired about me over the bed.

And what was your role?

CS likes improvisation. I had fixed passages and passages that I was allowed to vary as I saw fit. For example, a footballer died of ALS during this time. I said something to him - or about daily events - depending on how I felt and how the waves were blowing.

Did you have stage fright?

Without end! Since then I have insisted on a few minutes of inner recollection before major performances. Like a diva.

You paint too. Via software that you can control mentally.

I like to do with colors and shapes. I enjoy creating my own works. Then I realize how experience-dependent shapes and colors are. In one picture of me you can see so clearly how angry I was. It's just colors and circles. So I see it. For others it's just circles.

And since we're already talking about your occupations: you are also the chairman of an association.

It happened like this: I have been dependent on special transports for 15 years. It's a really tough test. You have to order them beforehand. Of course, they'll burst into the most beautiful party or forget you completely. That annoys and hinders. I've always wondered how to change that and buy my own car. In the 24h care you are mostly dependent on financial support if you don't have 6-7 digits before the decimal point on the account. Care eats everything. Valuables are also no longer allowed. That's when I came up with the idea of ​​a foundation and / or association. Together with a companion - Oliver Jünke, active and fit in a wheelchair - I founded the association. We don't just want to be mobile; we want to help other affected people with what we have experienced and had to learn ourselves. We designed a website with our experiences. In 22 months we had 100,000 clicks.

And do you already have the car?

We're still saving. It should be a car in which you can anchor several wheelchairs and where there is enough space to vacuum while driving. These cars are a little, uh - more expensive. We are looking for sponsors, collect donations and want ALS to become better known, better understood and thus more able to be helped. I think - no matter what doctors say - nobody should die of ALS these days. There is ventilation, there are aids. Even so, the survival time after diagnosis is only three to five years. ALS people die of broken hearts. Not at ALS.

Some may just not be able to live like this.

Of course, you have to completely throw your previous vision of life in the trash. Anyone who has a fairy by their side during this time creates a new concept of life. It is not at all difficult to tinker with what remains, namely brain, soul and feeling. In my lectures I often say that despite everything, you still need desires, dreams, goals and tasks. Anyone who can manage that or who has someone who considers you to be "normal" despite the diagnosis has actually won.

Do you give lectures?

Joo.

How's that?

This is a Powerpoint Praesi, of which I save the text here and use bizarre punctuation marks to teach the language program something similar to stress. To turn the pages, I just create pictures, and then it fits.

And where are you giving these lectures?

Um ..., trade fairs, universities, schools. Meetings too. Congresses. Depending on.

Angela Jansen can play theater, give lectures, run a club, speak with the left eye and print out conversations. She would like to be her own company, would like to manage the care budget and care herself. She believes she could do this from her bed more efficiently than any government official. Personnel costs alone accounted for almost half a million euros a year. That could theoretically work. The laws allow and even encourage it. But Angela Jansen - although she can do so many things - just can't sign it herself.

Is it really such a big problem to design autonomous care?

I am of age and legally competent. But I have to have someone to sign for me. And many understand that as "not clear in the head".

That is why it is necessary to loosen the neck vertebrae a bit with the authorities - so that you can be a company?

Due to the nursing emergency, I have great problems getting my 24-hour care manned. They quickly try to send you to such a storage facility. You know it as inpatient accommodation. I see my only chance to get things under control in the self-organization of my care. The health insurance companies try to introduce this form of care, but they are quite inexperienced. Then there is the hassle: the supervisor has to sign, and all communication goes through this signer - so I CANNOT be insane. And let me play around with a high six-figure amount a year just for personnel costs in nursing? It is difficult for the cost bearers to imagine that, one cannot blame them at all.

What if you could, as you would?

Then I would be a company. Would hire carers as I need them. Organize my budget yourself. In addition, set up a kind of supply exchange through the association. Get the ALS-Mobil. I would like to go on stage + into life + talk to people much more + get people excited about the fight against ALS + make a real wave so that the sleeping dogs finally wake up and do something! ---