Because every breath counts E-Book

Markus Hänni

• Herausgeber: Books on Demand
• Kategorie: Sachliteratur, Reportagen, Biografien
• Sprache: Englisch

Seitenzahl: 204

Veröffentlichungsjahr: 2021

Beschreibung

I wake up from Markus coughing. I'm used to it, and usually it doesn't wake me up for a long time. But this time it sounds different than usual, harder, more barking. He can hardly breathe in between. «Markus,» I ask him, «is there anything I can do for you?» I can't get an answer. The cough sounds agonizing and gets worse and worse. The twins are sleeping in the room next door. I listen to them over there, everything stays quiet. But next to me, Markus is struggling for breath between the cough attacks. I'm beginning to get worried. We are in my family's holiday home in Italy, and I should be able to relax during this holiday. I work as a deputy ward manager in oncology, and the past few weeks have been really exhausting. In addition to my fifty percent position, I organize our household, take care of everything with the nanny who looks after the two-and-a-half-year-old girls during my absence. I'll relieve Markus as much as I can. Markus suffers from the congenital metabolic disorder cystic fibrosis and is not very resilient due to the accompanying symptoms of this disease(...)

Leseprobe

BARBARA AND MARKUS HÄNNIwith Beate Rygiert

Because every breath counts

The story of two people who believe more in love than in reason

Imprint

Copyright © 2021 by Markus Hänniwww.markushaenni.comFirst Edition 2012 by adeo publishingDillerberg 1, 35614 Asslar, GermanyISBN 978-3-754-33523-9Cover design: Maike Michel

Cover motif: Hélène Jordi

English translation: Robert Young

“We can’t influence many situations, but we can decide how we deal with the situation.”Barbara Hänni“Love is always a bit of work, too.”Markus Hänni

Contents

Prolog

1 Best friends

2 The right one can rarely be found in Hollywood

3 Love isn’t a walk in the park

4 Ways to each other

5 What’s normal actually?

6 Yes!

7 Getting to know each other in your own nest

8 One plus one makes four

9 A miracle in a double pack

10 Hope for a long life

11 The art of being happy

12 Family hustle and bustle

13 You can count on it

14 Work brings pleasure

15 In the end there is love

Thanksgiving

Résumé

Image part

Reading sample from “Actually, I should be dead now”

Prolog

Barbara

Liguria, April 2017

I wake up from Markus coughing. I’m used to it, and usually it doesn’t wake me up for a long time. But this time it sounds different than usual, harder, more barking. He can hardly breathe in between.

“Markus,” I ask him, “is there anything I can do for you?”

I can’t get an answer. The cough sounds agonizing and gets worse and worse.

The twins are sleeping in the room next door. I listen to them over there, everything stays quiet. But next to me, Markus is struggling for breath between the cough attacks. I’m beginning to get worried.

We are in my family’s holiday home in Italy, and I should be able to relax during this holiday. I work as a deputy ward manager in oncology, and the past few weeks have been really exhausting. In addition to my fifty percent position, I organize our household, take care of everything with the nanny who looks after the two-and-a-half-year-old girls during my absence. I’ll relieve Markus as much as I can. Markus suffers from the congenital metabolic disorder cystic fibrosis and is not very resilient due to the accompanying symptoms of this disease, which is still incurable today. Keeping himself alive is often a task enough for him. Markus is thirty-seven years old. The statistical life expectancy of people with cystic fibrosis is currently around this age.

I put my hand on his back. Markus has sat up and sits bent over at the edge of the bed. I can feel the coughing fit shaking his whole body. He can’t talk; gasping for air takes all of his strength.

I get up and put on water for a cup of tea. I know that’s not going to help him, but I have to do something.

It is frustrating that even as a nursing specialist, as we call the profession of nurse in Switzerland, I cannot help him. And so, I put a few leaves of the verbena, which grows luxuriantly here in the garden, very close to the splendidly blooming hibiscus bush he planted on the occasion of our wedding, into a pot and pour boiling water over them.

“If only these aren’t the first signs of infection,” I think. Otherwise, this could quickly become serious and can only be controlled by intravenous antibiotics, possibly during a hospital stay.

Markus hasn’t felt very good for two weeks now. He was weak and lacked energy the whole time, and that is a bad sign for him.

The coughing attack has still not stopped; now Markus has been torturing himself with it for almost an hour. My thoughts work feverishly. What needs to be done? Should we stop the holiday and go home right after dawn so that he can see his doctor and be treated in hospital before his condition worsens into a serious crisis?

In my head, like in a movie, different scenarios take place: How fast can I pack? What food is left in the fridge? What day of the week is it anyway? And when we get home, who do I have to call? My mother maybe, to help me when we arrive with two small children? As long as Markus is this bad, he can’t help me.

As I try to manage this crisis, if it should be one, as pragmatically as possible, I swallow the feeling of disappointment. I was so looking forward to this vacation. We just got here a few days ago. The weather is lovely and I’m so desperate for a break from everyday life.

I bring Markus tea and put the cup on his bedside table. Then the cough eases slowly, Markus can breathe better again. Finally. Exhausted, he drops back onto the pillow. I lie next to him and stroke his curly hair, take his hand. We don’t talk. Talking is much too exhausting. Instead, I hold him firmly in my arms and feel his beaten body gradually calm down.

“Do you think we should go home?” I finally ask quietly when he can breathe more quietly again and only has to cough now and then.

But Markus shakes his head.

“I’m all right now,” he says. “It’s not that bad.”

I’m still not convinced. The concern for his well-being and that of our little family keeps me awake. It has been my constant companion for many years, since I decided to give in to my heart and marry a man who is terminally ill. But when Markus’s calmer breath shows me that he has fallen asleep, I decide to postpone the decision whether we have to stay or stop the holiday until tomorrow.

Markus

It’s not a serious crisis. I believe this very strongly. Especially, since I have been getting this new drug since the beginning of the year, which I have high hopes for. It just can’t be a crisis. Something irritated my lungs; it feels like a bunch of ants are crawling inside them. After the bad seizure is over, I am very exhausted and sleep deeply and firmly.

The next morning, I notice with surprise that Barbara has already started to pack a few things here and there.

“What are you doing?” I ask her in dismay.

She looks at me worriedly and says, “Don’t you think we should go home?”

I look into her eyes, which I love so much. Nobody has eyes like that. Sometimes they are clear and brown and sometimes they shimmer like moonstones, depending on the mood, depending on the incidence of light. Now they’re full of worry. And also a little disappointed. I know how much this vacation means to her. Yet nobody knows me as well as Barbara, nobody’s that close to me. Sometimes she knows better what’s good for me than I do. I wonder if she’s right this time too. Should we really be leaving?

“What do you think?” she goes on.

“I don’t know,” I answer honestly. And I have to cough again. I have to sit down. I feel so weak.

I watch my wife have breakfast with the kids. The three are all my happiness, there is nothing more beautiful than to hear their laughter, to watch their exuberant, carefree play. How much longer will I be allowed to accompany them? How much longer will they have their father with them?

At noon, Barbara asks me again the question.

“Do we have to go?”

I hadn’t noticed that she had been preparing all morning for the seemingly inevitable. The fridge is empty. The food bag is packed.

“I think we should make a definite decision now,” she urges. “Either we drive in the afternoon, then the kids will sleep most of the time during the ride. Or we could really stay here. Please make a decision!”

I can understand her well. How can she enjoy her holiday with the constant fear of having to leave at any time? So, I listen to myself. What does my body tell me?

“I don’t think,” I finally say, “that I need an intravenous antibiotic treatment.”

“Then we might as well stay here,” Barbara says.

I agree with her. The sea air is good for my lungs. And at some point, this urge to cough has to calm down.

On this evening, my wife’s tears come at the sight of the sun setting over the wide horizon. Barbara tells me about it later. I know how much she suffers from the constant tension that my illness brings with it. Most of the time she is incredibly strong, solid as a rock, optimistic and supportive. But of course, she also has moments of weakness. In view of the dreamlike panoramic view over the sea in this wonderful evening sunset, the emotions rise to the surface. Maybe she thinks, “It could be so beautiful. If only there wasn’t this threat all the time.”

1 Best friends

Barbara

As a young girl, I probably had the same romantic ideas about love as my peers. One day I would meet the man of my life and everything would be immediately clear. The famous butterflies in my belly would frighten away any doubt, I would simply know: This man and no other will make me happy. Just like the successful Hollywood films always make us believe it to be again and again. You overcome external difficulties and, in the end, you have a happy ending. And just as happy, of course, is the rest of your life.

I belong rather to the rational race of people, and therefore, already on my way to growing up, I had some doubts about this concept of love. In my parents, I could observe that a good marriage needs a lot of commitment and the firm will to maintain love in everyday life. The two of them led a gourmet restaurant that was known beyond the borders of Switzerland and by being awarded seventeen Gault Millau points and a Michelin star, they proved to be an excellent team. Even today, in their long-deserved retirement, they are still united by a deep love. I think from the very beginning they had a common goal in their lives: to take over the restaurant “Krone” in Bätterkinden from my grandfather and to do their best to create a place where other people can feel at home.

Certainly, I have already unconsciously internalized as an adolescent in this environment that a common vision can firmly weld a couple together.

Even though my parents didn’t have too much time for me and my four-year older sister, I had a happy, safe childhood. Our family time together was intense and loving, and my parents gave us not only a sense of quality and perfection, but also the Christian faith as a basis for their view of the world. This also included our quiet times, where prayer and reading the Bible and discussing what we heard were part of it. Although I sometimes experienced these quiet times as a must during my teenage years, my interest in faith grew as I grew older.

So, it happened that later, I happened to visit the same church as Markus, and knew him from afar, long before he even noticed me. Social life plays an important role in our church with numerous cultural events in which Markus is still passionately involved as an actor, author and director of plays and musicals. Everyone knew about his illness, even if he himself dealt with it very discreetly. Nobody had to tell you that; it was clear that he didn’t like to talk about it.

However, I was interested in the subject of cystic fibrosis because I had written my thesis about the hereditary disease cystic fibrosis at the intermediate diploma school before my training as a nurse. Whether this was a pure coincidence – or rather guidance?

I came up with the topic because one of the cooks in my parents’ restaurant was suffering from this disease. I dealt with her specific case in my thesis. Unfortunately, she died two years ago at the age of forty-five, a fate that seemed inevitable for most cystic fibrosis patients for a long time.

In the usual Hollywood romances, terminally ill people may appear in the supporting roles, but as so-called love interest, i.e. as the hero in whom the female main actress falls in love. To put it bluntly: The common perspective is simply too short for a life à la Hollywood.

For a long time, cystic fibrosis patients could hardly live to be more than thirty years old. When I met Markus, he was already in his late twenties. Reasonable as I was, I didn’t even contemplate falling in love with him.

Although he fascinated me from the beginning. Markus is an attractive man with an extraordinary charisma. Everybody liked him. When he was on stage, he just sparkled, and I liked his fine humor. However, I was in my early twenties, my whole life was ahead of me and Markus was not the only interesting man in my environment.

At that time, I experienced this typical phase of a young woman, who carefully tested her chances with the male sex, with all the necessary caution. I hadn’t gotten involved in a relationship yet. These matters of the heart were far too important to me to approach them lightly. If I was to get involved with a man as a partner, then I wanted to have the feeling that something serious could emerge from the relationship.

I wasn’t the type to flutter like a butterfly from one man to the next, on the contrary, it was never my style. My antennas, however, were far extended, and it was of course flattering when I noticed that a man was interested in me. These little glances, the unspoken vibrations of advertising, I could certainly enjoy. But I didn’t want to commit myself yet.

In our church, we meet during the week in smallgroups. A beautiful place to get to know each other better and to share life and faith. And suddenly I found myself in the same group as Markus.

We got into conversation and realized that we had a lot to say to each other and found each other very likeable. Markus offered to drive me home to Bätterkinden after the meetings, and soon it became a beloved habit. We talked and talked, and since the half hour driving time was not enough for us, we sat regularly one to two hours in Markus’s car in front of our house, before we said goodbye. That he liked me was obvious, and that did me good. We became best friends, and I found that I could talk more openly with Markus than even with some of my girlfriends …

Markus

It was nothing new for me to be something like a comforter for young women. The proverbial good friend to whom one could pour out one’s heart, who had the gift of listening and who often knew what to do. After a relationship had failed due to the limitations of my illness, I had given up the hope of marriage or even of starting a family with a heavy heart. Or maybe not? Of course, I had always wished that one day I would meet a woman to whom I could give my love. After all, I grew up in a very loving family and there was nothing more obvious than to dream of one myself. And was it really against all reason that the impossible could come true? In my life, there had already been so many apparent impossibilities that had turned out to be possible in the end. So why not in love too?

But at first it didn’t look like it. The women with whom I understood myself well did not consider me as a partner, but I found myself again and again in the role of a confidant with whom one could discuss everything. This was also the case with Barbara. On those evenings in my car, we talked about all sorts of things and found no end at all. And it wasn’t like I fell in love with her right away. At first, I only saw her as a dear friend. Nothing more and nothing less.

Until one day she took me to her side and said: “One thing I would like to clarify, Markus, so that there are no misunderstandings between us. I see you as a really good friend. However, that’s all it can become. Not that you might fall in love with me!”

“No, no,” I hurried to say, a little confused about this unexpected opening. “Don’t worry, I feel the same way. We’re best friends. Nothing more and nothing less.”

“Well,” Barbara replied relieved, “everything’s fine then.”

But I remained more quiet than usual that evening. Because somehow that’s what now occupied my mind. I didn’t like what Barbara had said at all. And I realized I wasn’t telling the truth. Not that I deliberately lied, no, not at all. However, only now, when Barbara had so categorically excluded more than a good friendship, did I realize that I actually felt more for her. However, I didn’t have the courage yet to disclose it to her…

Barbara

There was another young man to whom I said the same thing as Markus. And in this case, it was a good thing that I had laid the cards on the table because here my explanation was not quite so calmly received.

How did I come to come straight to the point with two men in my immediate vicinity like this? Well, I had realized that I had begun to enjoy the attention of these two young men. They flattered my ego and gave me recognition. When I realized that playing with other people’s feelings in order to enhance myself was really not a very laudable behavior, I felt obliged to state this clarification. After all, I was convinced that neither Markus nor the other friend could ever be more for me. So, I wanted to be honest and nip any hope in the bud.

A few weeks later, however, something happened that confused me quite a bit. During a conversation in our group, Markus suddenly told us that he might want to live in London for a year or two. And to my own astonishment, I didn’t like it at all. The thought that Markus might suddenly be so far away, didn’t please me at all.

Would I miss him? Oh, yes, I would. Very much, in fact. And why had he never told me about this wish, if we were such good friends?

That evening it was my turn to be quieter than usual because I had some things to think about. Finally, it became clear to me that what I had said to Markus was not true at all. He meant far more to me than just a good friend. Had I fallen in love with him? But no, that was impossible!

Immediately, I pushed the flash of this realization far away from me. And since Markus never spoke again about wanting to move to England, I managed quite well to suppress all that.

Because of my realistic way of looking at life, I didn’t draw any consequences from these new feelings – I took my time and let our friendship go on as before. Anyway, I also did nothing when Markus made a confession to me a few weeks later.

“You know, Barbara,” he said at a late hour in his car in front of our house in Bätterkinden, “when you explained to me that our friendship could never become love, it somehow hurt me. Before, I hadn’t been aware of that at all, but when you said it so crystal clear, I noticed that I felt more for you after all. That was all I wanted to say. Because I don’t want to be dishonest.”

We kept quiet.

And we just kept going on like before. I was well aware that I had long since begun to develop more feelings for Markus than a good friend. And all of a sudden, a tiny little thought stole into my head. It asked: “Why not? Why not Markus? What speaks against it?”

2 The right one can rarely be found in Hollywood

Barbara

Oh, a lot spoke against it. Anyway, my mind listed a long list of impossibilities. What if Markus were dead in half a year? Then did I want to suffer mourning him? From my environment, I knew nothing else than that a relationship means looking into the future together and making long-term plans. How would I make plans with someone whose life expectancy was far below mine? To whom doctors had often predicted an imminent death in his past?

No, of course I didn’t. And yet my feelings for Markus could no longer be argued away so easily. They were there. And although I am extremely skeptical about emotions and find that no decision and above all no love decision should be made exclusively on the basis of feelings, there was more and more often that other voice in me that said: “So what? What if Markus’s prognoses are not correct at all? What if his life expectancy is higher? And anyway, can you ever really be sure that you can grow old together, even if your partner is healthy?”

As a prospective nurse, I had in mind on a daily basis that health is not a commodity that is guaranteed to remain with us. I have been working in oncology for many years now, and death is of course part of my everyday professional life. Even without cancer, the life of a perfectly healthy person can be wiped out in a single second by an accident.

The desire of a young woman to start a family with a healthy man is all too understandable. But does this wish also justify that one decides against a love only because the partner has health “defects”? Does not such thinking contradict our ethics and our understanding of human dignity? Is a sick person worth less than a healthy one?

I asked myself other questions, too. What is ultimately more desirable: a relationship that promises the prospect of several decades and may not be quite as happy as one that may last only a few years, but is all the more fulfilling? What is more important: Quantity or the quality of a time spent together?

These were all very difficult questions and I felt unable to answer them quickly. Because, apart from the fact that Markus was ill, I was of course thinking about whether Markus really was the man who would make me happy all my life. Whose character, interests and ideas of life would fit mine, beyond our best-friends relationship.

Suddenly, I realized how many norm perceptions I was carrying around with me. For example, I had always imagined marrying an academic. However, Markus had not studied, because of his many absences from school and his hospital stays, he had “only” been able to complete secondary school and then did an apprenticeship as a commercial clerk. He finished it all off with top marks, but still, his reserves of strength were just not enough. Never in his life had Markus worked full-time; an eight-hour day would have exceeded his strength. And by the time we fell in love, he wasn’t working at all anymore, he wasn’t thirty years old yet. Of course, I understood that it cost him all his strength to stay alive at all. And yet this did not correspond at all to the performance orientation with which I had grown up. Nor the ideas I had of my partner.