Rok's Story: From Stroke to Strength

The Unexpected Onset of Stroke

It was one of those days when your head hurts, it’s preparing for rain, and you’re wondering what’s wrong. Why has your mood been consistently declining for the past 14 days? You feel that something is wrong, but you don’t know what.

Even the doctors don’t know; they say it’s mental, depression, burnout. My neighbour called me and asked if we shall mow the meadow to ensure the goats have enough food for the winter. I’m happy about the help offered, but I still do not feel any better. I thought of going for a bike ride. Maybe that will chase away the fog in my head, clear my mind, or sharpen my vision. My father-in-law lent me his electric bike to make me feel better, thinking some exercise would chase away depression. It was great; the electric bike is fantastic. Who would have thought? I used to criticize them.

However, my condition is not any better. Only the awareness that I did something for myself has contributed to a slightly better feeling. After the ride, I rushed to help my mom and carry freshly homemade peach juice to the basement… and then it happened.

An Unusual Sensation Preceding the Onset of Stroke

A strange feeling appeared in my head: darkness and dizziness, and I could barely see. Fortunately, I had my phone with me. I couldn’t read, but luckily, I saw my wife’s picture beside the phone number and called her. I asked her to take me to the doctor. She held my hand as I stepped out of the car and accompanied me up the stairs. After that, the darkness only flashes and fragments of memories. It’s as if life pressed pause. Temporarily stopped, blurred memories wrapped them in a haze.

The diagnosis was a stroke.

Time Backwards

I rewind time and thought for a moment. Ever since the day when the first COVID cases were approaching Europe and our borders when we had the first 5 cases in Slovenia, it all started. There was a sense of uncertainty, panic, working from home, a deadly disease is here, let’s take care of ourselves. I wonder if my condition started deteriorating back then. Then came the war in Ukraine, close to us, on European soil, tanks, explosions, threats of nuclear attacks… I was reading the news daily again, and for the first time, I felt it hard to breathe; my blood pressure increased I started trembling. They said (doctors) panic attacks and anxiety.

I told myself, hold on a little longer. At least another month; my wife is turning 40, don’t ruin her celebration. I was also chosen to be the godfather of my nephew. The boy chose me because, I guess, I’m his role model. I said to myself, don’t ruin that day for him. I’ll suppress the pain. It’s nothing. It will pass.

Signs Unheeded

If I think back a bit further. Five years ago, my father died. He was the head of the family. He meant a lot to me despite often arguing and not being a perfect family where love prevailed. I know he stood by my side in the most challenging moments when I underwent my first heart surgery at 18 and my second heart surgery in 2014.

Whenever I needed him, he was always there for me and my family. I won’t lie; it still hurts me today and always will. I’ve just somehow gotten used to the emptiness and pain. After his death, most of the work he used to do fell on my shoulders. I cared for the orchard, vineyard, mowing, and other farm work. I wanted it to stay that way and tried to make him proud. But time has shown otherwise. Apparently, it was too much for my body, work, lunch, half an hour of rest, and hard work until dusk.

Did I completely forget about myself? About taking care of my body, my mind?

The Last Days Before the Stroke

I had been experiencing problems with blurred vision for some time, but certainly not as frequently as in the last month. The ophthalmologist diagnosed myopia and prescribed glasses. I didn’t know I also had green cataracts or glaucoma.

Sitting at work in front of the computer, my vision blurred again. I could not handle it anymore, so I stepped outside for a walk during working hours. Hoping for relief, I wandered through the streets of Žalec. I hoped it would get better, but it did not even after half an hour. I went to the doctor, who diagnosed depression and panic attacks. That was the first time I had experienced a fear of death. The doctor suggests to the emergency department for an examination and CT, just in case. The CT showed nothing. However, it happened on that fateful afternoon. It was as if fate waited for everything to be over, my wife’s fortieth birthday, confirmation, work.

Strength in Togetherness

Lost in the Black Hole of Stroke

When I let go of my wife’s hand, and the doctors took me over, my memory vanished. I only remember that they shone lights in my eyes. I remember the ambulance from the health center to the hospital. In the hospital, the doctors performed spinal punctures, and we needed to wait for approval for some checkups since I have an artificial valve and vein. I remember the night screams of pain and the arrival of a newly admitted patient. I still remember my wife by the hospital bed. However, those memories of the first days are shrouded in a fog as the picture is unclear.

Lost in the black hole of stroke, I grappled with fragmented memories and an unclear path forward.

Hospital

A Glimpse Inside the Hospital

One of the things I remember vividly is the death of a patient in the bed next to mine. She was dying with her spouse and her teenage daughter by her side. I cannot forget the intense crying; the daughter prays to the gods not to take her. Silence, tears, sobbing… I cannot forget that; it’s forever imprinted somewhere in the unsullied part of my brain. All I remember from the ICUs is a stronger-built nurse with curly hair, merciless but only in appearance.

First Days After the Stroke

The first days in the hospital were difficult. I asked my wife countless times what had happened. I couldn’t remember. She repeatedly explained it to me, but I couldn’t retain it. In my thoughts, I wandered through endless time in the hospital, where the time didn’t move anywhere. The nights were too long, the pain too intense.

I pondered what had happened, whether we had had an accident when we were returning from my mother-in-law’s visit. The thought of why they didn’t want to tell me what had happened gnawed at me. Maybe one of my girls (daughters) is no longer here, maybe my mother? Why am I here? Many horrible thoughts, with excruciating pain and tears in my eyes, I wondered why they wouldn’t tell me… But they did tell me several times, repeatedly. I couldn’t remember, apparently.

Understanding the Diagnosis: Stroke

They somehow managed to explain to me what had happened, that I suffered a stroke.

Another day or so passed before my memory slowly and slightly started functioning again. I gradually became aware of reality; before, it all seemed like delirium, an intermediate space, floating in between, like dreams, a nightmare. They said the stroke paralyzed the right side of my body, which was unresponsive. Even the corner of my mouth remained unresponsive when I forced a smile. At that time, in my helplessness and frustration, I was far from realizing the luck I had. I was so uncertain about the future; I said goodbye to my wife when she visited me in the hospital. Not like the goodbye you say during a visit, but goodbye forever. I explained what she should do if I ended up in a wheelchair, unable to speak or walk. My intention was to ensure that I wouldn’t be a burden to her or the family. I wanted her to be happy with someone else while I ended up in a care home for disabled people.

The Beginning of the Fight: Embracing Recovery After Stroke

I will forever remember the words my wife said. I will be grateful for the rest of my life because her words strengthened me. She said, “Please, do your best and come back home. I won’t raise the children alone.” Until then, I had no will, energy, or hope to walk normally or live a dignified life. Her words changed the meaning. They anchored themselves in my heart. They didn’t let me rest. I decided. I won’t give up; I will fight as much as possible! Even though there will be bad days, I may repeat goodbye, and I have said goodbye a few times. But I am fighting, and I will continue to fight. I want to see my daughters grow up happy, embraced by their loved ones, perhaps in a white dress. That still drives me, and I know it will push me when things get tough. These thoughts live within me. They are my motivation every single day.

Reflecting on Near Loss

I remember the day when a new patient was brought from the ICU into our room—a patient who didn’t fare as well as I did. The man didn’t speak, didn’t eat, didn’t move. Only his eyes silently gazed at us. The medical staff came thrice daily to take care of him and change his bandages. I remember the silence and the sadness that prevailed when we realized how close we were and how it could have ended completely differently. The man was older. He lived alone in a house. Apparently, he used to paint. He was an artist. I learned this from a colleague who came to visit him. He had no one else, no family or children. He was dying alone. Three months later, by chance, I looked at the obituaries at home, and he was, saved, taken by God. I wondered how terrible it must be to lie and wait for death. I realized how close I had been.

Positive memories and heartfelt people

There are also positive memories and heartfelt people who were by my side. One nurse stands out in my memory, though I can’t recall her exact name—perhaps Darinka or Darja. I apologize. She made me coffee, the real Turkish one that she drinks herself. She took me to the shower for the first time; I didn’t want to or know if I could manage it. Tears welled up as she seated me in a chair and helped me bathe. I remember that feeling after 14 days of not showering.

Roommates’ Encouragement

I remember my roommates Bogdan and Marjan. So many times, Bogdan warned me not to say goodbye to my wife. He encouraged me, saying that everything would be okay. Bogdan is a 50-year-old man with a wife ten years younger—a businessman whose life was also halted, just like mine. A few days after the stroke, he received many calls and dealt with business problems. Even though he didn’t know all the letters and couldn’t write, he was in action. He had incredible willpower, at least for me at that time.

I still keep in touch with Marjan. A pleasant man, also with tremendous determination. He had an epileptic seizure and a broken hip and shoulder. He went through much more than me. I don’t know; perhaps you need to accept that you will need to walk on crutches and be dependent on others. I remember the window view from the hospital. The view over Celje Castle. It seemed so mystical and unreachable at that time. That view from the hospital bed ignites a burning desire to revisit the castle someday! That also strengthened my rehabilitation and sparked greater respect and admiration for nature.

Celje Castle

The Road to Rehabilitation

After 14 days in the intensive care unit, my journey continued in the rehabilitation center. Headaches, dizziness, and blurred vision still accompanied me daily. Homesickness became stronger and stronger. Even there, I remember saying goodbye to my wife. I don’t know how she found the strength, and I don’t know how she managed it all. I cannot imagine how complicated the whole situation was for her. I’m unsure how I would have coped with something similar in the opposite situation. But I will forever be grateful to her! We married four years ago, and sometimes I joke that we vowed to stand by each other in good and bad times. That’s what we promised in front of everyone. We have faced the bad times, and only good times lie ahead. I hope it will indeed be so.

Challenges of Daily Rehabilitation

Beginning with physiotherapy and exercises posed immediate challenges for me from the very first day. It was a struggle for me to get to physiotherapy every day. It wasn’t easy. I had no appetite despite all the food available. I could have eaten a lot and gained weight, but I couldn’t. The fear grew stronger with any pain in my head and blurred vision; it immediately brought back the association with the stroke. The fear of death, of a recurrence, of anything wrong intensified. My heart rate also increased to 180, so they increased my dose of Cipralex, the calming tablet, to one whole tablet. I was given half a tablet in the hospital because my wife had mentioned panic attacks before the stroke.

Fourteen days in the hospital and three weeks in the rehab center, including two visits to the emergency department due to blurred vision. A head CT scan showed no fresh bleeding or stroke. That’s when they discharged me to home care.

Therapists

Returning Home Post-Stroke

After a month, I saw my home again. Tears filled my eyes. I embraced my wife. My thoughts and eyes wandered through the landscape. My nose caught the fresh scent in the air. Too many times in the hospital, I thought I would never return home. Yet, I did. I reached the day when I would sleep in my bed again. I could see my daughters every day and listen to the birds singing. My heart was full. But it still wasn’t easy. During the day, the kids were in school. My wife was at work. I was alone with the fear that something could go wrong. I thought waiting in bed for my wife to come home would be better. She could take me to the doctor if anything went wrong. I stayed alone with my thoughts, mostly negative.

Alone at home, but not alone

What now? How to move forward? No more physiotherapy, no more exercises. I was left to myself, my will, my thoughts, and I won’t lie; I wasn’t very strong at first.

I don’t know who to thank for being employed in such a company with such colleagues. My colleagues sent me many encouraging messages during my hospitalization, but I forgot many. I forgot what they wrote to me, and when I reread them later, I realized they missed me and wished me all the best.

Utilizing Innovative Technology for Recovery

Before the stroke, I worked as a senior mobile app developer in an IT company. The company is developing software tools for physiotherapy. I was responsible for developing the mobile part of the solution – the app for patients. I never thought our app would come in so handy for me. The Connected mHealth solution is designed precisely for rehabilitation purposes, where a professional expert assigns an individual exercise program that the patient follows through the mobile app. The patient stays in touch with their physiotherapist/doctor remotely. It gives you the feeling you are not alone.

My colleague, Matevž, an experienced kinesiologist and product owner of Connected mHealth, prescribed a program for me. A program tailored to me, adjusted to my diagnosis and my abilities. After consulting with me about what I did at the rehabilitation, Matevž and I started with similar light exercises I performed through the app. Encouragement from him and all my colleagues contributed to my regular practice. How beneficial it was! The difference was evident, especially when it was difficult for me. I struggled with basic tasks like preparing breakfast and brushing my teeth. It was challenging to get through the day. But gradually, I made progress. Matevž and I gradually increased the intensity, making it easier and easier for me.

Home again After stroke

Looking Ahead with Gratitude

These exercises, the training, made a difference in my day so that I didn’t spend the entire day lying in bed. The activities boosted my self-confidence; I saw that I could do it and be capable. Even though it was often difficult for me to get started. There were days I did not feel well, I had a headache, my will wasn’t at its best, and the fear of something going wrong was even more vital. It was genuinely challenging, but with support and encouragement, I overcame that too. After a few weeks, accompanied by my wife, I took my first walk down the street. How proud I was of that!

Then my mother fell ill and was bedridden. I stopped exercising—two or three weeks of doing nothing. I remember how my mood changed. Once again, I spent the whole day in bed, feeling sorry for myself, enduring pain and discomfort. My colleagues again convinced me to start exercising and follow the program. I did it. My mood drastically improved. Once more.

Gratitude for Rehabilitation Progress

I can confidently say that the exercises I performed through Connected mHealth made a difference. Especially in the beginning, the difference was significant. I don’t know if I would have made it without the expert support through Connected mHealth and how things would have turned out. My family and colleagues’ exercises and support pulled me out of the depths of despair, fear, and pain, improved my well-being and self-confidence, and restored my physical strength. I will forever be grateful for that.

A Year Has Passed

It would be pointless to lie to myself and others. Not a day goes by without me still thinking about the worst, about death. During one of my visits, the psychologist told me, “You will never forget.” It’s true. I am slowly turning it into an experience that has changed me forever. It has turned my life around, my priorities, my way of thinking. The pains, blurred vision, and discomfort are still here. But just as there are bad days, there are also good ones, and I live for those. I live for my daughters, wife, family, friends, neighbors, colleagues, and nature. That’s why I embrace each day anew. I am attentive to the simple things I may not have noticed otherwise.

I just finished reading the book “F**k It.” Yes, you read it right. They say that I had a collision that happened in my life. That’s why I say “F**k it” to all the unimportant things.

Embracing Gratitude and Curiosity

Where would my life go if the stroke hadn’t happened? If life would not press the pause button just in time? I know that I will still shock myself sometimes, like when I couldn’t remember the name of a colleague I saw every day. I know there will be tough days. Fear will come again, but I’m grateful for how it is. Thankful that I’m still here. With curiosity, I await where life will take me, with new insights and a priceless experience. An experience that unfortunately closes the eyes of many, but luckily it has opened up for me.

Rok Leš
Rok LešSenior Mobile App Developer