And most of all, we all knew how it felt to live.
We were a mixed bunch. We would most likely never have met if it hadn’t been for this. But now here we were, and I felt at home in their company. I laughed at the poor jokes we made about ourselves and everything we were unable to do. We were physically exhausted because of all the exercises, but also relaxed in each other’s presence—at ease and comfortable. I could just be the person I had become with my crazy hair, bony body, and weak muscles.
The eight-year-olds in Daniel’s classroom had asked all the obvious questions. The seventy-year-olds in the gym didn’t have to. They already knew the answers.
On the days I wasn’t with my new friends, I spent mornings and afternoons alone in the house. I saw our street, and the lives of my neighbors, from a different point of view. On either side of us lived widowers, both of their wives lost to painful cancer; one of them had had a bypass operation that had probably saved his life. They were both retired. I knew who they were, of course. I had talked to them and we had a perfectly friendly relationship; Peter had borrowed stuff from them for the garden. We were all good neighbors.
But I didn’t know them, not really. Now we had something in common: time in the middle of the day and shared stories. It didn’t take long for another pensioner a few houses down to come around, too. He had experienced a stroke. They came to see how I was, or if I needed any help, and before long I became part of their community. We all got along. They brought the coffee, and I set the table in the garden.
We talked about anything but being ill. We didn’t have to. One could talk about how difficult it could be on certain days simply to get out of bed, to see the point of it all. And we all knew how that felt. But mostly we were just hanging out. They told me so many stories, from when they were young and had their lives ahead of them, all the recklessness and silliness of youth you tend to forget or never associate with elderly neighbors. Basically, we were having fun.
Peter and I had been so busy with our life, going to work, getting the children to school, sports, and after-school programs, that we hadn’t really appreciated who our neighbors were. I now found myself a richer person through their company, their everyday generosity. I might have been on my own during the day, but like in the hospital, I realized I was never truly alone.
Life was different. There were so many things I had to think about, so many issues that needed to be solved. Peter drove me for check-ups at various hospitals, sometimes several times a week. We went to talk to a social worker from the city council who was assigned to my case, coordinating my continued physio and training. I was on extended sick leave from my job at the university, and I started to worry if I would ever be able to go back.
While I was still at the hospital, I had received a rather nice fellowship with excellent conditions for my research. They all knew what was going on with me and the fellowship was postponed accordingly. My new boss invited me for a chat. At first, I didn’t want to go. I was nervous that I wouldn’t be able to perform well and they might think me not worthy to return. This was all in my head. As it happens, my new boss was kindness itself, full of understanding for my situation and very generous. He wanted to say to me in person that he didn’t expect to see me until I was ready—and then he wanted to give me an opportunity to see my new office.
That took me by surprise. It was a lovely day, warm and sunny, and as he opened the door and I walked into my office for the first time, I gasped. I could see the trees in the park right outside my window, the stream running through it. There was my desk and my chair. This was to be expected, of course, but they had also fitted in a couch for me to take a rest when I needed it. Everything was carefully planned for me to make a gradual transition back to work, one step at a time, at my own pace. I was so grateful, and I felt passionate about coming back to continue my scientific career. I was shown the way forward and I embraced it, happily.
It would take another six months before I was able to return to work, and then only part time. But I saw another target, and I aimed for it.
Slowly but surely, I was able to do more and more around the house. It wasn’t easy not being able to do all the things I used to do, but I kept going even though I sometimes needed a break from everything. Peter and the children were all very helpful, but it didn’t take away the pain and deep sorrow over what had happened to me and how it had affected the people I loved the most in this world.
One evening I decided to make dinner. I desperately wanted to get back to doing things I had always done, that I had never given a second thought to, and this felt like an easy way in. The rest of the family agreed to help getting me the ingredients I asked for. I didn’t want to call on Peter for help, even though he was sitting in the study next door. I wanted to do this on my own. Tomatoes, garlic, onions, peppers, mushrooms, basil, lettuce and pasta: the simplest ingredients to put together. Or so I thought.
I joked to myself that I didn’t have to be afraid of cutting off a fingertip. But it didn’t help. It took me forever. The onions drove me crazy. I had no strength in my hands. I couldn’t bend what was left of my fingers. I was getting exhausted from trying, frustrated from holding the knife with a tight, tiny grip; from rinsing the vegetables in excruciatingly cold water; from standing up. Some of my fingers started bleeding from the work. I was overwhelmed with how unfair it was. How difficult it was to resume living, and how it seemed it would always be.
I couldn’t take it anymore, I couldn’t help it. I stood there in front of the sink, feeling sorry for myself, locked in my own bubble of self-pity. Hating everything that had happened to me, hating every mountain I still had to climb to do all the things others never gave a thought to. I was tired of fighting. Tired of keeping going. Tired of everything.
I started crying. Standing there, overcome with grief, tears pouring down my cheeks. Miserable, disabled, and alone in my own world.
Then I felt his hand. Daniel just looked up at me, his tiny expressive face I knew so well.
“Mum,” he said quietly. “I think you have the most beautiful hands in the world.”
And after a very long and dark journey that started on New Year’s Day, something deep inside of me finally came together. I was wrong. Life was not miserable. I might have lost a few pounds and limbs along the way, but in the way he looked at me, I realized I had gained so much more. I had added another layer to what it means to be human.
From that moment, I knew my life had changed for the better. Things were right.
That day, I healed.
Epilogue
I never thought I would write a book about myself, but five months in hospitals in 2013 profoundly changed my life and affected deeply how I think about myself and others. I will never be as strong as I used to be, and the active life I used to live is no longer an option. I have to take care of myself in a completely different way: I have to manage my schedule carefully and allow for breaks; I need my sleep and to be able to take an afternoon off at very short notice. If I am tired, I have to rest or my body will stop functioning.
I am practically blind in one eye and need glasses to read with the other. With a left thumb as my only unimpaired finger, I need to find alternative ways around most things. Simple tasks such as buttoning a shirt or tying my shoe laces take a lot longer now. Sometimes when things are getting too difficult, I look at my hands and curse everything that has happened to me.
Nothing prepared me for the speed of change in my life. It all came too fast and in the course of a single day, and it would probably have been so different if a doctor on night shift taking a home call hadn’t mistaken a violent bacterial infection for the common flu and had got me to hospital much sooner. Streptococcus pneumoniae is one of the deadliest bacteria in the world: each year close to half a million children under five die from it worldwide, and yet many of us carry it without being harmed thanks to a healthy immune system.
It is spread by small droplets flying through the air from coughing and s
neezing, and causes a range of illnesses such as ear and sinus infections and pneumonia, which can be serious enough, but what makes it particularly dangerous is its ability to penetrate barriers in the body, allowing it to enter into the blood or the tissue and fluids protecting the brain and the spinal cord, causing septicemia and meningitis. When this happens, the human body’s natural protection is very limited. What separates a person from life or death at that critical stage can be down to a matter of minutes.
The bacteria shut me down. As with other patients who are locked in their own bodies, I was awake and conscious, but resembled a patient in a vegetative state. Studies have documented that it is often family members and not the medical staff who are the first to realize that patients are aware. This was certainly the case for me.
With the help of new communication technologies, we understand the long-term effects of being locked in better and have a new perspective on the quality of life a patient can experience, although no new technology has yet helped in the early stages, when most patients—like myself—are limited to blinking or eye movements. This is a most frustrating experience and the ultimate test of patience. Healthy people and medical professionals sometimes assume that the quality of life of a patient who is locked in must be so poor that it is not worth continuing. But studies confirm that the majority of chronic patients profess to have a good quality of life, no worse than patients with severe disabilities, despite social isolation or difficulties with daily activities.
I know I was lucky. I got out and got my life back, even if it was a different life. Many don’t. Every little sign, token, and recognition from people you love and care about matters and increases your well-being as you lie there without speech or movement. You pay far more attention to the little things. They are all you have and they give you the strength to carry on.
That was how I felt. Being left alone for so many hours, locked in my body, the only thing I could do was think. In the beginning I couldn’t even do that very well, as my short-term memory was shot, but at least my shaky consciousness provided me with hope for starting life again. We take for granted who we are, but without memories we fade and if we lose control of the memories we have, we lose all sense of who we are. Lying there, unable to move, I had to figure out how to put myself back together and as my mind became stronger, I found that I could use my memories as building blocks; by placing them carefully in the right order, one by one, I could remember my own personal history and provide the all-important key to my recovery.
Since my recovery, I have been asked over and over what it feels like to be conscious and aware but unable to communicate; to be paralyzed and understand what people were saying around me, but only able to move my eyes from one side to the other—and blink. I hope I have given you a sense of what it’s like. If I were to sum it up in a single word, it would be loneliness. I felt alone in the world, abandoned, let down, desperate and frightened. The worst part was that I didn’t know if I would remain like that, forever entombed in my own body.
Having gone through this, I know that the final word I would want to hear is a word of love. It is an often-used cliché that in order to know what something is like, you should try it yourself; and while I wouldn’t want anyone to experience what I have gone through, I do hope that my story will inspire others to let those around you in need—from friends or family lying in a hospital bed, to colleagues or neighbors who have suffered in some way—know that they are not alone, that you care.
Every letter, postcard, flower, and token from family, friends and colleagues helped my recovery. They made me stronger and helped me fight the loneliness. There was no shortcut to getting my life back. I was forced to take the long road back to any sense of normality: two months in Intensive Care, three months at a rehabilitation center, followed by six months of training and recovery at a local rehabilitation center before I was able to work part time, and more than a year on top of that before I was back full time.
It was tough and it still is. I have learned that life can hurt in ways I wasn’t even able to imagine. But I have also learned never to take anything for granted and that every day matters. In the face of death, I got a thirst for life, a strength to live and a sensitivity to enjoy even the simplest of everyday routines. In my hospital bed my constant refrain was “never mind,” when Peter didn’t get what I was trying to communicate. I’ve learned to be more patient with others and now if things don’t go exactly as planned, or if someone does not entirely live up to what I’m expecting, I form the same words in my head: Never mind.
I am truly and deeply grateful for surviving, but I live with the consequences of what happened to me. My family suffered. We all have scars and we will have them forever. Not a day goes by without thinking about those consequences. Every day I’m reminded of the things I can’t do anymore. And while I wish none of this had happened, life is curious. I have adapted to the change in my circumstances and learned to appreciate things that would not have happened had it not been for my illness.
I am still me, but I have changed. My priorities are different and some months after returning to continue my university career in data visualization, I realized that this was no longer what I wanted. It was a difficult decision. After all, I had worked very hard and for many years to get where I was. But now it felt natural to let go of it and do something else. In my job I talked mostly to my peers, my scientific colleagues, but now I wanted to make what I did with my life matter to more people. I had been given so much and now I wanted to pass it on.
As a scientist, I know that knowledge is the best weapon against disease and that ignorance is our greatest enemy. As a patient, I learned how critical it is in order to make a successful recovery to have some kind of control of your own situation and to be able to communicate properly. Knowledge and empowerment; I could work with that.
Just before I got ill I had been elected a Member of the Young Academy, at the Danish Royal Academy of Sciences and Letters. When I returned to work, I also returned to the Young Academy. Here I met like-minded spirits and together we founded an educational charity we call the Science Club, a mentoring network for children and young adults inspiring future scientists through scientific programs and creating role models within the natural sciences.
Our daughter Victoria had attended the Science Club for Girls in Boston. She loved it, but there was no similar program for her in Denmark, so I decided to start one up for her and as many other school children as possible.
Using my scientific skills to communicate complex data through easy graphics, I also founded a company, Graphicure, with a colleague from Boston. Our mission is to empower patients to monitor and understand their own treatment and recovery.
With the help of an incredible medical team who go to work every day to save lives, as well as the support of family, friends and colleagues, I didn’t just get my life back. I got something more, something rare and of exceptional value: a profound desire to make my life matter, not only for me, but for as many as possible.
It was not simply my own life that had been affected by my illness. We sold our beloved house and moved into a flat. There was a lot of thinking about what we should do with our lives. Peter took a new job as a museum director and the children changed schools and made new friends. We have always been close as a family, but now we are even closer. In the first few years following my recovery, they all stayed on high alert for every sign of me feeling unwell. I don’t think that will ever go away. The shock sits with us as a family and it takes very little to take us back to where we were.
But this is also a strength, a compass for what we do, how we spend our time, and the choices we make. I can honestly say that it has increased our quality of life. What an utterly unexpected bonus. What we went through as a family was horrifying, terrible in all respects, but it has given us something positive we can use, and it made me realize that I can do something different with my life.
The Science Club was created to give future genera
tions a better foundation for making a difference in the world. Graphicure was founded to allow patients to be people, to put control back into the hands of those who have lost it. And this book was written to give a voice to those who have none and for anyone whose life has changed out of all recognition from one moment to the next. I am trying to see my unexpected survival and recovery as a gift that can help others, too.
This is what I do. This is my life, and I am dedicating every moment to making it the best it can be.
A Caregiver’s Checklist
All the months I spent in the hospital, and the time it took me to recover at home, taught me how lucky I was to have my family around me. They noticed all the little things and were in constant contact with nurses, therapists, and doctors—sharing what they had observed but also learning about my treatment. Their presence and advocacy made a difference and helped my way to recovery. If you have a loved one in the hospital in a critical condition or in a situation where she or he is not able fully to speak for her or himself, you must never lose sight of how important you are. You can make a difference.
There are many things you can do to help your loved one in these situations. I have collected a list—a caregiver’s checklist—based on what Peter and the children did to make sure I made a better recovery, and on what gave them a sense of purpose when my future was uncertain.
1. Be present and make your presence known. This may sound self-evident. But it’s not. As a relative you try not to be in the way of the doctors and nurses, you take a step back, you keep quiet, you don’t want to disturb the treatment. Often, healthcare professionals too are trying in their own way to be as invisible as possible, to be nothing more than the anonymous treatment of a patient. But being invisible doesn’t help anyone. The invisibility game makes communication terribly complicated. Therefore, what you need to do is to make yourself known. Make the healthcare staff know that you are there and ready to help in any way possible. You have something incredibly valuable to offer, the scarcest resource in any healthcare system: time.
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