Dear all, Johanna is a mother of four and had already survived meningitis when, in the middle of her holiday, everything changed: she had a stroke at the age of 40. She only has fragmented memories of the journey to hospital, but her family has told her a great deal. Now she doesn’t want to waste any more time and has found a new purpose, a new reason for living… truly impressive!
Dear Johanna, you were on holiday with your family when suddenly something felt off. How did it all start?
We were on holiday in Turkey; it was a perfectly normal family day with four children, with noise, movement and that typical hustle and bustle that, as a mother, you hardly notice anymore because it’s become so routine. At some point, my body started to feel strange. At first it was very subtle, because I suddenly couldn’t make out patterns clearly; things seemed out of place, as if my brain wasn’t sorting information properly anymore, and in my right ear there was a strange bubbling sound, a feeling of pressure that I couldn’t quite place.
It wasn’t severe pain, but rather an irritating, faint sensation that I couldn’t ignore. I put my youngest daughter to bed—it must have been early evening—and whilst I was lying with her, I already knew that something wasn’t right. When I went downstairs to my husband and my older children, I said, something’s odd here, I think I’m having a stroke, even though I had absolutely no medical knowledge of typical symptoms. Yet that word was suddenly there, spoken clearly and with certainty, and to this day I don’t know how I knew that.
A stroke at 40. How far back do your memories go?
My memory is patchy; there are isolated fragments, but large gaps in between. I still remember saying that something was wrong; I remember that inner knowing, but what happened afterwards is a blur. My husband later told me that I was still speaking to him relatively clearly in the car on the way to A&E. But I have absolutely no memory of that. In A&E, I then suffered epileptic seizures. I have absolutely no memory of any of these events.
What did your husband and children later say about the initial period and the initial shock?
My husband told me how quickly a normal evening turned into an emergency, how a holiday suddenly became a hospital stay and a life-threatening situation. The farewell affected me particularly deeply, because as we walked to the car, the children accompanied me and I think I hugged them and said, perhaps this is the last time we’ll see each other.
I myself have no memory of it, I have no image of it, only what they told me. I mulled over that sentence for a long time, because I have always considered myself very mindful in my choice of words, especially towards my children, and in hindsight it felt inconsiderate to confront them with such an existential possibility. My neuropsychologist later put it into perspective and explained to me that my brain had already been in a state of absolute emergency and could no longer regulate emotions. It wasn’t a calculated statement, but an existential one. Nevertheless, it remains between us and I can’t sugarcoat it.
You also had a near-death experience…
Yes, though not in connection with the stroke, but back in 2019, when I developed life-threatening meningitis and encephalitis from a common cold and sinusitis, triggered by pneumococci. At the time, I was pregnant with our third daughter. Statistically speaking, I belong to a very small percentage of people, as such outcomes are rare.
My brain was inflamed and within a short time I was in a coma. My near-death experience was nothing spectacular – no tunnel, no view from above – but a state of complete tranquillity. I met my deceased relatives; it was natural and peaceful, without fear and without struggle. It was not a conversation in the earthly sense; no one spoke in words, and yet the message was clear: You cannot stay here; you still have a task to fulfil. This task was very concrete for me, as I was pregnant and carrying a child under my heart who was meant to come into the world.
I didn’t see this as a spiritual mission, but as something very down-to-earth; there was still life that wanted to come into being through me, and for that I had to return. I suppressed this experience for a long time; I wanted to return to normality and to functioning, but my basic sense of trust had been shaken and I developed a great fear of death.
How long were you in a coma? Did you notice anything from the outside world?
I was in a coma for several days and I didn’t notice anything from the outside world – no voices, no touch, no conversations; my only memory from that time is this state of calm. It was only when I woke up that my conscious memory returned. I was lying in a room that was completely unfamiliar to me; I didn’t know where I was or why I was there.
Above all, it was the sensory stimuli that overwhelmed me: the light, the sounds of the machines, the smells – everything was garish, loud and alien. I couldn’t sit up, had no support, and then this indescribable fear came over me; my heart was racing and I was convinced I was dying. I kept saying, ‘I’m dying now,’ until a nurse came, held my hand and breathed calmly with me, whilst telling me that I wasn’t dying, but was simply panicking.
The transition from that complete stillness to physical overload was brutal, and if I’m honest, at that moment I preferred the peaceful state of the coma to my physical condition, not because I didn’t want to live, but because I was completely overwhelmed by the situation.
Where do your memories first start again?
There is no clear moment; my memory returns in fragments: a strong feeling of thirst, panic, a racing heart, the nurse’s hand, his calm voice, and then a digital clock on the wall showing 28 December 2019. I had fallen into a coma on 23 December 2019. That date was like an anchor, because I realised that several days were missing.
When I see photos today that were taken shortly after I woke up, I can’t remember them. Only later do clearer scenes emerge: medical examinations, the lumbar puncture, and finally, when I was allowed to leave the intensive care unit for the general ward, where my children then came to visit me. One of my first clear thoughts was the question of how the baby was doing, whether everything was alright with the baby; I remember that.
What was it like when you first felt your body again?
Above all, I remember panic; my heart was racing and I was convinced I was dying. The contrast was enormous, because whilst in a coma I had experienced complete tranquillity, and now I was back in a body full of stimuli, full of noises and full of heart palpitations. It was overwhelming and terrifying. I actually preferred that state of calm, not because I didn’t want to live, but because the physical experience was so overwhelmingly intense.
When did it dawn on you that everything was different now?
Not immediately after the meningitis and encephalitis in 2019, because I was pregnant, had two older children at home and was busy trying to get back on my feet. But my basic sense of trust had been shattered; a trivial cold had turned into a life-threatening situation and I developed a profound fear of death. It was only after the stroke in 2024 that I could no longer push it aside, because standing on that threshold a second time was something I could no longer avoid.
The thought came to me relatively quickly: this didn’t happen for no reason; it must have a purpose. In the years prior, I had completed several therapeutic training courses, including in logotherapy. Viktor Frankl said, ‘He who has a why to live for can bear almost any how’. It became clear to me relatively quickly that I did not want to fall into that panic again, and very soon after my stroke I began to regulate my nervous system, including through self-hypnosis and brainwave training.
In what ways are you still affected today?
My visible physical limitations have largely receded. If you saw me today, you probably wouldn’t say: ‘This woman has had a stroke’, but I live with what is known as an ‘invisible disability’.
My nervous system has become significantly more sensitive. My resilience is limited. Stimuli, stress, conflicts or too many appointments in quick succession can quickly overwhelm my system. And that has immediate consequences. If I don’t take it easy, if I don’t set clear priorities, if I don’t take my limits seriously or don’t communicate them, I end up crashing.
This isn’t theoretical knowledge, but something I experience very physically. You can’t separate the existential from the physical. My nervous system forces me to adopt a different way of life. To be more mindful, to have more clarity, to avoid overburdening myself. I used to be able to compensate for a lot, but that doesn’t work anymore. Even though it’s a limitation, it’s also a radical learning experience. My body is no longer something I can ignore. It has become my yardstick.
What has all this done to your family?
It has shown us as a family just how fragile life is. Not in a dramatic way, not constantly on our minds, but there’s always a quiet awareness in the background: nothing can be taken for granted. We’ve learnt to look out for one another more closely, not just in practical terms but emotionally too, and in the hustle and bustle of everyday life to simply ask: Are you really okay? Are you feeling overwhelmed? Do you need a break? If one of us is constantly pushing themselves beyond their limits, it affects us all.
And we’ve started talking about topics that people usually prefer to avoid: dying, death, saying goodbye. Not in a gloomy or fearful way, but honestly. We can’t erase these topics from life because they’re part of it. Sooner or later, every one of us will be confronted with them. So why pretend they don’t exist? I speak very openly with my children about this, and with my husband too. We no longer shy away from the subject.
It is important to me that, when the time comes, my children are able to develop a healthy way of dealing with dying, death, loss and grief. They should know that dying is part of life and that grief is allowed to be there without destroying one’s own life. I hope they learn to integrate saying goodbye without being broken by it. Perhaps that is part of what we as a family have taken away from these experiences: a greater awareness of one another and less fear of the unspeakable.
Did you have that strong will to live the whole time?
No. After the meningitis in 2019, I definitely didn’t have it. I was terrified of dying. I had lost my basic sense of trust. A trivial cold had turned into a life-threatening situation. My brain was inflamed. That experience left me feeling deeply unsettled. I didn’t have a sense that ‘everything happens for a reason’. I was afraid. And I just wanted everything to go back to normal.
After the stroke in 2024, it was different. I remember that relatively soon after I regained full consciousness, a thought occurred to me: This didn’t happen for no reason. It must have some meaning.
In the years prior, I had undertaken further training in therapy, including logotherapy. Viktor Frankl, the founder of this meaning-centred form of therapy, said: “He who has a why to live for can bear almost any how.” This sentence suddenly felt very real to me. It was clear to me: I don’t want to fall back into that paralysing fear of death like I did in 2019. I want to find a different way of dealing with it.
I began regulating my nervous system actively very early on, including through self-hypnosis. I consciously put myself into states of relaxation and worked with my brainwaves to avoid falling into spirals of panic. That helped me a great deal. I was initially in a clinic in Turkey. My mother came to see me from Germany and stayed in my room. We laughed an incredible amount.
We even apologised to the doctors because we thought it might be inappropriate to laugh so much in such a situation. But they said: There’s nothing better for healing. I believe that laughter wasn’t a form of repression; it was acceptance. I found a mindset relatively early on: It is what it is. And I will find my way within that. That doesn’t mean everything was easy. But I was no longer in that existential fear I felt in 2019. It was more a form of conscious ‘yes’ to life.
Why are you training to become a hospice companion?
I have had experiences in this life that not many people have in this way. I have stood on the threshold twice, where mortality is no longer theoretical but real. I know how it feels when suddenly everything comes to a standstill, when one’s own life or the life of a loved one can no longer be taken for granted.
And I experienced something in hospital that moved me deeply. Although I was a patient myself, conversations arose with my bed neighbours, women who were seriously ill or even terminally ill. We talked. Sometimes we just sat together in silence. I was able to listen, hold a hand, be there. For relatives too. That’s where I realised: this space doesn’t overwhelm me. It doesn’t put me off. On the contrary, I feel very clear-headed there.
I don’t believe that people ‘need me’. But I do believe that in such places I can offer something, drawn from experience and humanity: a presence, a steadfastness, a companionship. Many people are thrown into such extreme situations completely unprepared, without any prior experience, without language, without rituals.
At the same time, as a society, we are pushing ageing, dying and death further and further to the margins, because they are not productive, not economic and not efficient. We are losing touch with them, and I believe that in doing so we are uprooting ourselves. We exclude them from our everyday lives until they suddenly affect us personally and we do not know how to deal with them. I believe we need more points of contact again, more rituals and spaces where these topics have their place.
For me, hospice work is not a gloomy place. It is a deeply human space. A space where dignity, farewells, gratitude and even humour are allowed to coexist. I want to help ensure that we learn once again not to push these thresholds aside, but to consciously accompany them.
What message would you like to pass on to everyone who thought they had infinite time?
Believing we have infinite time is an illusion. And it is just as much an illusion to believe that we can protect ourselves from finitude through enough discipline, enough optimisation, enough control. We can perfect our diet, structure our routines, plan our calendars down to the last detail, but none of that makes us immortal.
At our birth, we entered into a deal to leave this world again at some point. That is not a threat, but a fact. And I believe we are doing ourselves absolutely no favours by ignoring this fact and excluding it from our lives and our society.
When I ask myself today what will remain once I am no longer here, I do not think first of possessions or achievements. Of course, things remain. Perhaps a house, perhaps money, perhaps written words, but what matters most is something else: What remains is the feeling that people associate with me. Whether they felt safe in my presence. Whether they felt seen. Whether they feel remembered for shared moments in which they could laugh or be honest.
When I bear this in mind, my priorities do indeed shift, but not dramatically. It is not a radical break, but a quiet adjustment. Then it becomes more important to have that conversation today that I keep putting off. Then it becomes more important to listen to someone rather than glancing at my mobile phone at the same time. Then it becomes more important not just to organise my children, but to really engage with them.
It doesn’t mean I stop making plans or taking on responsibilities. But it does mean I become aware of what I’m trading my time for and with whom I want to share it. Because time is the only thing we cannot multiply. And perhaps this very awareness is not a cause for fear, but an invitation to live more mindfully.
