Barbara Ludwig

 

 

 

 

Extract from “No Time To Cry”
Diagnosis: Creutzfeldt-Jakob-disease
written by Barbara Ludwig
Bastei LÜBBE Paperback, Volume 61574
Published October 2005

Translation by Deborah Langton

July 1998

Jürgen
The wave‘s rolling towards me, gathering height just in front of me, its undertow tugging at my feet while its massive weight is about to crash down on me. My body stiffens in anticipation and a tingling sensation spreads through my belly. The seconds drag while I make myself wait before giving that powerful spring forwards, before jumping into the cresting wave, using all its force to speed towards the shore, my body gliding through the water.
It didn’t happen. No jump. No gliding. The command from my brain didn‘t reach my legs. That perfect interplay of what the mind wants and what the body’s muscles can do, failed. The curling wave had its way with me. The tower of water overwhelmed, overpowered and engulfed me. It made a plaything of my body, tossing it around like a ball at the water’s edge. There was a fleeting, but entirely false, sense of security before it resumed its little game, lifting me up in what seemed like gigantic arms, whirling me round and hurling me across the waves. I gave in, I lost all sense of where I was on this high speed roller-coaster.
The rough sand scraped painfully against my skin as I tried in vain to make my legs work, to get my head above water again. Beaten by the waves, I thought to myself, and resigned myself to my fate. The sea-salt will help my corpse disintegrate and I’ll be rocked by the waves forevermore. OK, so be it, I’ll just give in and become part of you, you waves.

My leg – what the hell was wrong with it that day? It was like jelly. Why?
Mr Ludwig? I look up, dragging myself away from my thoughts and back to the present. The ward doctor is standing near me and presses a hefty-looking questionnaire into my hand. I‘d actually fixed an appointment weeks ago for a check-up with a senior medic known to be a stroke specialist. And now, here I am, standing in a hospital corridor with all sorts of consulting rooms going off it, ready for the first treatment and getting some initial tests done.
“Please note down on this form, as accurately as possible, everything about your problems. To make a diagnosis we do need to know about anything out of the ordinary. So if you could fill this out before we do the other checks.”
I take the papers and look around.
“At the end of the corridor you’ll find some chairs and a table. There’s plenty of light near the window.”
He‘s pointing to a seating area. I look at him. He’s in his early thirties, his gelled, sandy hair standing upright, swept away from his forehead. He could be my son. I feel old. I desperately need to sit down. There‘s a light blue plastic chair at the table. I glance at the magazines and information booklets, neatly stacked in two piles.
“Every second counts for a stroke victim. Every link in the rescue chain holds firm!” says one of the glossy brochures. On the cover is a picture of a team of doctors and paramedics in red uniforms, laughing as they step out of a helicopter, looking as if they’ve just been on a trip into the mountains and are off to raise a glass and have a bite to eat together.
I’m seized by a feeling of panic. For a split second, all I want to do is to run. Just go, my inner voice tells me. Then I say to myself: Who do you think you are? Got the shits, have you? What are you? A girlie? A sissy? A complete drip? A dork? A wuss? A baby, or what? No, I think to myself. You are a fifty-three year old man.
I put the paper in front of me and ponder. It’s hard to set out in black and white that something just doesn’t feel right anymore, that things have got more difficult.
Eventually I start to write.
Feeling of confusion on getting up. A swaying feeling. Almost keeling over. Don’t feel safe walking, walking with the legs apart in a rolling gait, as a precaution. Hypersensitive feet. Almost painful to walk on gravel. Going upstairs. Feel unsure about the first step, OK after that but the feeling of uncertainty stays. Leg muscles feel weak, particularly the calves, hard to take the weight on one leg only.
My legs sometimes buckle at the knees.Very hard to move in confined spaces. It’s easier outdoors. I have no trouble riding a bike and can sometimes go easily ‘no hands‘. If I push myself, I can cover long distances. I can even manage to spend quite a long time in a crowded store but find it really tiring. I get out of breath quickly. If I lie down, I usually recover quickly. I sometimes nod off in the chair during the day. Sitting like this only brings a partial recovery.
I have to concentrate enormously when working on the computer. I feel unsteady and can’t work like I used to before these symptoms kicked in. Difficult texts are a challenge. I find myself increasingly unable to present facts with any fluency when talking and can’t hold a conversation as easily as before. It’s difficult for me to move things around. It’s impossible to carry a full plate to the meal-table.
Being in the sun makes me feel extremely unsettled. Cloudy weather is better. My arms seem to tremble and I’m agitated, hurried and react to things nervously. Instead of being able to breathe calmly through it, I really gasp for air and hyperventilate. But both arms and legs stay quite calm when that is happening. The turmoil all goes on inside me. Clients sense this high level of edginess in meetings. And so do I.
To sum it up, I can say this: any movement, especially running, results in considerable unsteadiness in my legs and in a swaying feeling, not dizziness, in my head, as well as a feeling of confusion. Only by making an enormous effort can I avoid walking with a stagger. Leg muscles feel weak. Movement brings feelings of real exhaustion. Increased need for rest and sleep. Never in full possession of all my strength. Problems concentrating and thinking.
Tests: Blood pressure measured frequently. Results within the norm. Electro-cardiograph. Results negative. Lab tests, including thyroid. Results negative.Repeated at the end of May. Again, negative. Blood test and tests for Lyme disease. All negative.
Ears investigated because of the loss of balance, the swaying feeling, tests negative. Sinus areas clear.
The ophthalmologist has prescribed glasses for near and distance vision, with a slight diopter. Apart from that, nothing. Further neurological tests and Doppler. All negative. I’ve been to the neurologist twice. CAT scan negative.
MRI scan of the skull. Negative. Walking ataxia. No explanation found. At the clinic I’ve been through an ENG, an electro-neurographic process to determine, and pinpoint accurately, specific neural lesions by establishing evidence of an increase in the distal latency period. Same again. Negative. Investigation of capacity for somatically sensitive response. Nothing to report.
The young doctor comes hurrying back to me. “I can rescue you now, Mr Ludwig! So sorry to have been longer than expected. An emergency case!”
I hold out the document to him, the pages now covered in writing.
He leafs through, taking a moment to read them, then places everything in a folder with my name on it. “I can see that you’ve described your problems in great detail. Please come this way.“ I follow him a short distance down the corridor and he opens a door. I step through it. A freshly made hospital bed awaits me ...

 

Seven months later

Monday 1st February 1999

Jürgen
I had a really narrow escape from the flames today. Yellow and red flames. I‘d heard Barbara’s voice. Where was she? Had the fire got her? I was frightened. I shouted for help at the top of my voice and hammered with my fists on the wooden surround to the bed. It seemed like an eternity before anyone came. Where’s my wife? I asked. They didn’t say. I need her, I don’t want to lose her, they’ve got to rescue her. You’ve got to put me in the wheel-chair so that I can help her.
“Calm down, Mr Ludwig, you can’t have heard your wife’s voice. She normally comes around 1 o’clock and it’s only 11. You’ll have to be patient for a bit longer. We’ll give you a sedative and then you can rest until your wife is here.”
How can they possibly think that I’ll get any sleep when I’m so worried? Barbara can be so careless. Yesterday she just had to ride in the lift in spite of the huge sign with its bright red edging and the warning ‘Not to be used in the event of fire‘. You just couldn’t miss it. But it didn’t register with Barbara. And I had a feeling that its shiny, chrome-plated walls were burning hot and I didn’t dare touch them. Happily, I managed to persuade Barbara to get out of the lift. But what’s going on now?
“Hello, Jürgen, what are you up to? Doctor Sietner says you’ve been really edgy today and nearly raised the roof with your shouting. What’s wrong?” Thank goodness. Nothing has happened to her.
Barbara
By the time I get to the clinic I’ve already had a morning of anguish. In the last week I’ve gone to look at a care home each morning. Each visit is another knife in my heart. All I see is dozing, muttering, dribbling people, sitting there helplessly, rocking back and forth in their chairs and talking nonsense with imaginary companions. Today I’d been able to see how Jürgen and I would be spending the years ahead, sitting at one of those tables, a mug of cocoa in front of us, placed on the plastic cloth covered in little flowers. Not a cheerful future beckoning, I thought to myself anxiously. As usual there’s a waiting list and although everything inside me says no, I’ve put us on this one, too. I’m still hoping for the place offering ‘full care‘. But they haven‘t been in touch for a long time. I’ll follow it up tomorrow.
When I get to the clinic, Jürgen is in bed. He looks tired. The nurse tells me about the jab to sedate him and how he had been making a noise. I was moved to hear how he had hammered on the cupboard because he thought he had heard my voice. He beams when I greet him. He strokes my breasts. By chance I was wearing a tight-fitting sweater. Ralf arrives an hour later. I’m pleased to see him and Jürgen is equally delighted. We all laugh when Jürgen’s opener is to ask him what he’s doing in Brisbane and what the weather was like in Sydney. I make a mental note to explain to Ralf afterwards why Jürgen thinks he’s in Australia, in Brisbane. Ralf plays along with it in a good humoured way.
“Hey, Jürgen! Do you remember how the weather changed at least three times during that trip? It took us hours to get from Paramatta to Bondi. Thank goodness it wasn’t raining when we got there. But the waves were high enough for the coastguard to ban bathing.”
Jürgen’s eyes lit up as he stammered out‚ waves, Bondi, Manly, surfing, Pacific... and grabbed Ralf’s arm. I left the pair of them alone together for a while and made a phone-call. It’s a no from the ‘full care‘ service so that puts paid to my good idea and leaves me for the forseeable future with the problem of the care home..
Later on I‘m in a pub with Ralf. He doesn‘t have long before his train and is sitting next to me. Silent. After a while he clears his throat and seems to have to force the words out. “I’m devastated. Jürgen, who was always so energetic, so full of life. Jürgen, who never sat still. Jürgen, always coming up with ideas and sweeping the rest of us along with him. So get-up-and-go. Jürgen, such a great talker and now he’s stuck there in that wheel-chair, a wreck of a man. God, I could weep..“ I take hold of Ralf’s hand. “Yes, it makes you want to weep.“ And that’s exactly what I want to do more than anything. Just weep and weep. Endlessly. But I don’t let myself.
“But to look at, for all that, he’s hardly changed. Only I really went cold when he greeted me the way he did. Does he really think he’s in Brisbane? Crazy. I nearly laughed out loud. But it’s terrifying to see Jürgen living like this. And they really don’t know what’s wrong with him?”
The doctors are trying. I’m really not conscious of the extent to which he‘s changed because I’m with him every day. It develops so slowly. I’m glad he’s not so aggressive any more but really quite calm. The more sick he becomes, the less he realises it. Jürgen thinks he’s on his travels. And he was always really happy when he was travelling so that means he’s happy now, strange as it may sound.

Sunday 7th February 1999
Barbara
My cold is passing. Now I’ve only got the cough to get rid of. I now know what the financial demands will be as far as the care home is concerned. Last week I had time to do all the sums, fill out application forms for Jürgen and met a very nice woman who heads up a care service. I know a number of homes inside out and have noted down the pros and cons of each. I’ve calculated that if I work fulltime, there’ll be enough money. I start to reconcile myself to the thought of spending time with Jürgen but with him in a home. Whatever disease they discover, we’ll take it in our stride, I say to myself by way of encouragement. Defiantly I tell myself that we’re prepared to face even Alzheimer’s and I steel myself for the meeting with Professor Jabold.
It’s early afternoon when I knock on the door of the consulting room and step inside. I am already feeling uneasy. Professor Jabold stands up to greet me. So does Doctor Techner. We sit down at the meeting table. Both doctors look very serious. My unease increases. “I am sorry that you have had to wait so long for the test results. We wanted to be sure, before....“ Before what...? screamed a voice inside me.
“Your husband is suffering from suspected Creutzfeldt-Jakob- disease.” Creutzfeldt-Jakob, wasn’t that the thing that had cropped up on every website print-out? Images of cattle, their legs buckling beneath them, staggering towards a painful death, danced before my eyes again.
“An exact diagnosis can only be made after death. But all the indications are there.“
After death? What the hell are these people talking about? I sit there. As if paralysed.
“There is no chance of recovery. We estimate a life expectancy for your husband of six months at the most.“
Professor Jabold stands up and switches on the screen on the wall. The X-rays there can now be seen quite clearly. I go over and stand next to him.
He points to different places. “If you look here...” The doctor’s words seem to be coming from behind a curtain. He‘s saying something about nerve –cells and whitish holes. Outwardly I am composed, I ask questions. Inside I‘m in absolute turmoil, my whole world is breaking up, falling apart, as if hit by an earthquake. A doctor from Göttingen is coming over on Tuesday. It would be good if you could answer his questions. I nod mechanically and then leave the room.
Out in the corridor I meet Achim and Sigrid. I’d forgotten that they wanted to visit today because they were passing through Munich again. Almost at the same time they bumped into Stefan, Jürgen’s school-friend, who wanted to visit today, too. I behave the way people do when they are in shock and calmly relate to them the doctors‘ findings as if it didn‘t affect me at all. One by one, they each put their arms around me and hug me. It does me good. I am so relieved not to have to look Jürgen in the eye. These three can keep him entertained. Stefan is joking around as usual, acting the fool and Jürgen laughs, enjoying it all. He says something quietly to Sigrid and Achim, something about Fuerteventura. He looks happy about it. I can’t laugh. When the three of them have gone, I take Jürgen down to the dining room for the evening meal. I sit next to him. Brigitte, the nurse, looks at me and says, “Need any help?“ “Thanks, no, it’s OK.“
It’s once I leave the clinic that my outer composure just goes. The sky couldn’t be more grey and it’s snowing. The air is frosty and feels as if it’s full of sharp-edged ice-crystals which, like my emotions, seem to tear at my skin and gouge deep into my soul. Sobs rise in my throat and I just want to die. I try to steel myself and say to myself, “Barbara, you’re not dying. You have to keep going. It‘s Jürgen who has been handed the death sentence. It’s for Jürgen that the executioner is sharpening the knife.” Once I eventually got home, I felt years older. I just wanted to bury myself in my grief. I wanted someone to take away all the fear. I reach for the telephone with trembling hands. Jürgen is her only child. It’s damned hard to say to her, “Your son is going to die soon, very soon....”

Monday, 8th February 1999
Jürgen
Are we by the sea at last? Sigrid and Achim were here today. So we must be. I wanted to thank Achim for his help. I think he could see how pleased I am to be on Fuerteventura now.
The island is beautiful. Barbara says my mother’s coming to see us tomorrow. She‘s probably keen to find out how we live and what the place is like. She always did have a nose for anything new. I’ll show her everything, especially the wonderful sea and the miles of sandy beaches. I stroke Barbara’s arm. We’re going to the coast tomorrow. I’m so looking forward to seeing the waves, their white crests, the horizon stretching to infinity. Maybe we’ll see a ship sailing by. I’ll keep a look-out. I close my eyes and there seems to be salt in the air.

 

Barbara
When I get to the clinic on Monday, my eyes are puffy, swollen from crying. They fill with tears again at the slightest thing. Jürgen caresses me lovingly. All of a sudden, but very softly, he says “You’re crying about me too much.“ I force a smile. He’s right.
No time to cry.

Jürgen died 3/12/1999.