Comeback: My Journey Back to Life

INTRODUCTION

Readers of this book will immediately be struck by the unfiltered honesty of the author’s story. They will also see how one of his essential characteristics probably enabled him to write this book. Sometimes, this honesty is painful; sometimes it will raise a smile – but it will never fail to make readers feel close to somebody who has become one of the most special people to me ever since we began studying medicine together.

That’s how I met Stefan. All the students felt completely overwhelmed by an enthusiastic professor in a biochemistry seminar. When it was over, no-one even knew what the lecture has been about. A pink-haired guy in the second row put up his hand and said: I’m sorry, but I didn’t understand a word of what you’ve just told us. I was impressed that someone in this group of freshers had the courage to admit their lack of knowledge so openly. In the years, and meanwhile decades that followed, I learned that this student’s honesty and directness weren’t something he put on, but that they were an integral part of him that I experienced and valued many times, always with a new level of respect. Fortunately, the pink hair phase only lasted a few weeks.

This book is a testimonial of a doctor who became a patient himself. For a doctor, it can be harrowing to read about the encounters this patient, Stefan Hainzl, had with colleagues. The way, he describes his feelings shows what we doctors do to our patients with unempathetic comments that don’t take the individual into account. All doctors should read the description of patients' everyday occurrences, such as having to take lots of tablets or physical or psychological reactions to medication, so they can see what matters to patients beyond the doctor’s diagnostic perceptual horizon and how this determines the course of their illness and their handling of therapies.

For patients, no matter with what illness they turn to our medical system, it will certainly be a relief to learn that they are not alone with their inner turmoil and sometimes despair in a system that is so often not tailored to the individual.

And that it is always worth fighting. Stefan always was, and still is, a serious and determined fighter. I probably don’t know anyone who has such a high level of determination towards his own person as Stefan does. This determination holds immense opportunities, but also has its price, as the reader will discover. Stefan is somebody who can make decisions and live them. When the path he has chosen turns out to be the wrong one, such as his digression into the paleo diet, Stefan is able to make a new decision and not stick to the old one. That is another of the key characteristics that have accompanied him through life.

As a conventional medical practitioner and scientist, I obviously take a very critical approach to all medical content, especially when it comes to alternative treatment concepts. In the case of treatments for autoimmune diseases, whose geneses are still largely a mystery for the medical world, i.e., diseases like multiple sclerosis, where one's own immune system turns against the structures of the body, giant leaps have been made through the development of so-called disease-modifying drugs or biologicals and impressive therapeutic successes have been achieved. However, especially in the treatment of MS, these therapeutic agents often trigger strong allergic reactions that cause many patients to discontinue the treatment. This book highlights this problem at a very personal and individual level. I distinctly remember conversations with Stefan, where his fear of developing progressive multifocal leukoencephalopathy, a serious neurological complication while taking a certain drug, became clear. Something that sounds like pop philosophy is often criminally disregarded in the treatment of patients (and not just in conventional medicine): that the treatment of a disease doesn’t just consist of medication and direct effects and side effects, but that patients, with their thoughts and fears, have a much greater influence on this mode of action than we assume.

I am happy for all readers who hold this book in their hands and can now immerse themselves in Stefan’s story. This is his personal story. It’s also his personal medical history. As a doctor, Stefan is privileged to be able to make medical decisions on the basis of his long and intensive training, research and interpret primary literature by himself and, above all, make treatment decisions for himself and monitor them closely himself, for example using his lab results. This is particularly important for treatments, such as the vitamin-D therapy described that have a very narrow tolerance range and which, if not monitored, have already landed some patients in intensive care.

For me, Stefan’s way and his critical approach to aspects of his illness and life on so many levels has always been exemplary and admirable. I am happy and glad for him and everybody close to him about his health and the immense progress that he has fought for. I am sure that this book will help many readers, regardless of what journey they have embarked on themselves.

Tobias Winkler

Dr. Tobias Winkler is Professor of Regenerative Orthopaedics and Trauma Surgery at Charité-Universitätsmedizin Berlin

AT THE DESTINATION

Autumn 2021

The man in the mirror has grown old, I think. My beard keeps getting greyer and my wrinkles deeper. But, I still like this man in front of me. I’m really proud of him. After my morning run and shower, I’m standing in front of the mirror, ready to start the day – to start the day as a healthy person.

There’s an Indian saying: A healthy person has many wishes. A sick person has just one. Officially, I’m sick. I’ve been diagnosed with multiple sclerosis. But my body is fit and healthy. I’m back to being a person with many wishes.

I’m overcome with pride, as always, when I look back on recent years and my journey. I’m proud to have shown the courage to go my own way. Proud to have taken responsibility for myself and my life. Proud of my willpower, focus and discipline. Without discipline, we can’t achieve our goals.

It doesn’t matter whether our goal is to run a marathon or compete in a cycle race, to learn an instrument or prevent a heart attack, to stay fit and healthy into old age, to be there for our grandchildren, or to make the most of our new found freedom in retirement. Regardless of whether your goal is to prevent an autoimmune disease from progressing, to have a fit body as an MS sufferer or to prevent a stroke, discipline is always the magic word. Discipline and courage. The world belongs to the brave, to those who have the courage to do things differently.

My gaze wanders to my image in the mirror. I see a man who has shown this discipline and courage. And yes, I have been scared to death at times. But courage doesn’t mean not being scared. Courage means being scared, but doing it anyway. We need to recognise that we are in charge of our lives.

I’m almost imperceptibly nodding to myself. I’ve found my path. It’s my own, very personal path. It’s a path far away from conventional medicine, a path in harmony with my body, a path that has brought me here. Freshly showered after my run, fit, sporty, healthy and just shy of fourteen years after my diagnosis.

On the most profound level, I am convinced of this path. People have different reactions when I tell them about it – I’ve experienced everything from pure admiration and the desire to emulate it, to outright rejection. That’s okay. Because this is my journey. My body. My life.

When I see patients in my practice, who can hardly walk in early retirement, because their joints are so sore, when I see cardiac patients struggling for breath at the slightest exertion, when I see people who have literally surrendered to their autoimmune disease, I realise that all of these people have one thing in common – no perspective. These people have resigned themselves to the fact that life supposedly isn’t going to be kind to them. However, I believe that life treats all of us equally well or badly. Some of us, however, are more challenged to take responsibility for themselves. My life began to change when I started doing just that.

I’m not sure why we find it so hard to take responsibility for our lives. Maybe, because we then have to blame ourselves when things don’t go well. It seems easier to hand over the responsibility to somebody else, preferably doctors. We want medicine to fix what we ourselves have destroyed. But when we take responsibility for our life with conviction and dedication, then we can credit ourselves for our successes and these successes feel great.

I turn away from the mirror, quickly pull on some clothes and leave the bathroom, passing the door to the kids’ bedrooms, where my daughters are still asleep. If these girls only learn one thing from their dad, it’s that their life, health and happiness are in their own hands. They are not supposed to do everything the way I have done, but to do it the way they think is right. They should think independently, form their own opinions and be aware of how much their lifestyle affects their body. They should know that a diagnosis is only ever just a word and can never determine how their future will pan out.

We’ve got a name for everything: Alzheimer’s disease, bronchial asthma, atherosclerosis, coronary heart disease, high blood pressure, stroke, depression, chronic fatigue syndrome, cancer, fibromyalgia, arthrosis, rheumatoid arthritis, polymyalgia rheumatica, eczema, irritable bowel syndrome, ulcerative colitis, Crohn’s disease, migraine, Grave’s disease, Hashimoto’s disease, multiple sclerosis, rheumatoid arthritis, type 1 and 2 diabetes, metabolic syndrome, obesity, burnout… to name just a few. All names, words, diagnoses, a sentence for many, but in my eyes often just a warning. A wake-up call to change our life, to consciously choose a healthy lifestyle, to wake up, to start doing things for ourselves, with discipline and courage.

A healthy person has many desires. A sick person has just one keeps running through my mind. But what if healthy people paid a little more attention to the sick person's one wish? What if we all took better care of our health? Many of the illnesses I have mentioned would never occur if we, as healthy people, dedicated ourselves to the desire for health and led a healthy life.

I go through to the living room. My wife, Laura, is sitting on the terrace, reading. My gaze wanders to the bookshelf: besides novels and travel guides, there are many books about meditation, nutrition and our genes. So much knowledge, so many eureka moments, are inconspicuously arranged on these shelves. All these books have helped me to find my own personal path, to change my diet, to recognise the influence of my genes. They all have one message in common – everybody has their life and their health in their own hands.

Laura looks up from her book: So, what are we doing today? I don’t know. I only know what won’t be happening: There won’t be any dizziness, or dragging one leg behind me, or poor vision in one eye. There won’t be any multiple sclerosis. In its place are new wishes and dreams. Who knows? We might end up making one of them come true today.

THE LOWEST POINT

PyeongChang Winter Olympic Games, South Korea

February 2018

I will remember the 2018 Winter Olympics in South Korea for the rest of my life. It was my fourth Olympic Games as a team doctor for the ÖSV – the Austrian Ski Association (Österreichischer Skiverband). We had to cope with temperatures of down to -30° Celsius and tried to remain in our local time zone for the entire games. This was mainly possible, because everything in the Olympic village was open 24 hours a day, so we could have our meals at the usual time. We knew all of our competitions would be taking place in the late evening local time and that our athletes wouldn't be at the peak of their performance then. We tried to make our bodies think that we were still on Central European Time and that our competitions were taking place in the morning. We didn't go