The life that changed in the blink of an eye

When Rikke Schmidt Kjærgaard awoke from a coma after suffering a particularly nasty form of meningitis, she was unable to move or speak. Locked in her own body, she could still hear all that people were saying around her and the only way she could communicate was by blinking. One blink for no, two for yes. Here, she tells Russell Leadbetter how with the love of her family and friends, she has rebuilt her life, one painful step at a time

ONCE you have read the extraordinary book by Rikke Schmidt Kjærgaard, it does not come as a surprise to learn that she and her family have learned to treasure the smaller things in life, the things that we never really notice.
“Absolutely,” she acknowledges down the line from Copenhagen. “I appreciate the little things much more than I did before. I take time; I take a step back if things become too stressful.
“It’s the little things,” she adds, “like our youngest, Daniel. Seeing him, just observing him, going into his room in the morning and just waking him up, and sitting by his bedside for a bit … I take my time to do those things much more than I did before. Definitely.”
The book’s title and subtitle convey the awful scale of what Rikke and her family – husband Peter, and their children Johan, Victoria and Daniel – endured five years ago. It is called The Blink Of An Eye. The subtitle is How I Died And Started Living. The story it tells is, in the words of the author Bill Bryson, who contributes a foreword, “the most spellbinding and harrowing story I believe I have ever heard.”
Rikke, a much-travelled, cosmopolitan scientist, was just 38 when she taken violently ill on New Year’s Day, 2013. A local night-duty doctor who was called out took one weary look at her and said she was suffering from flu. But the terrible symptoms continued. Peter contacted the family GP early the following morning. Paramedics arrived to take Rikke to hospital. Her heart stopped at one point – she was clinically dead – and though the paramedics managed to restart it, the rest of her organs began to surrender. In intensive care she was put onto a ventilator and a dialysis machine. Her life really had changed in the blink of an eye. 
She spent two weeks in a coma. 
She had been diagnosed with pneumococcal meningitis, a bacterial form of meningitis – “a special kind of sugar-coated bacteria,” she writes, “that acts like a tiny armoured vehicle destroying everything in its way in the human body.” 
Normally, it would have been caught by the spleen – but she had lost hers, it turned out, in an illness some two decades earlier, and no-one had been any the wiser. When she awoke from the coma, all was confusion, barely comprehensible. She writes, vividly: “There are no Hollywood moments in waking from a coma. When you imagine it, you think of someone waking up, asking, ‘What happened? ‘What did I miss?’ ‘What am I doing here?’ But in real life, real hospitals, waking up is a process, a fragmented jumble of impressions, lights and sounds. It is painful and noisy …”
Rikke was unable to move or speak, unable to communicate with her family. Because of lesions to her brainstem, she was now locked in her own body. The memory of it will never leave her: she was paralysed but unable to utter a word, while able to comprehend all that people were saying around her. The overwhelming sense of loneliness she encountered haunts her still.
When she was finally able to communicate, it was by means of blinking her eyes – once for no, twice for yes. A spelling board was produced, by means of which, at an agonisingly slow pace, she could take part in conversations. 
And, of course, she also had to come to terms with why she was in hospital in the first place. “It took me weeks before I began to understand what had happened to me,” she writes. “I had lost my memories, my bearings, and my sense of self. I could not move, I could not speak.”
In all, Rikke spent five months in hospital – two months in intensive care and three in a rehabilitation centre – followed by another six months at a local rehabilitation centre. Today, she is practically blind in one eye. Her fingers were terribly affected by gangrene; now, her left thumb is her only unimpaired finger. But, drawing on deep reserves of fortitude, and on the love of her family and friends, she has rebuilt her life, one painful step at a time.
Bill Bryson, who chanced upon Rikke’s story when he met Peter at a dinner in the winter of 2016, is surely right to describe the book as a “highly personal, deeply affecting account of what it is to be yanked from a happy, well-ordered life and thrust into a sudden, unimaginable, terrifying darkness.”
Rikke returned to her university career in data visualisation – something she had worked tremendously hard for – but she realised it was no longer what she wanted to do. She now dedicates her life to helping other people. She has co-founded an educational charity, the Science Club, as well as a company, Graphicure, which seeks to develop tools that allow patients to take control of their treatment and their lives. More of this later.
“I’m fine today, and living as I did before,” Rikke says on the telephone. “The only thing that has changed is my work life. I am doing something that makes more sense to me, and more sense to a lot of people. I think I have received a gift, and when you get a gift like this, it is your duty to give something back.”
She wrote the book to give a voice to people who find themselves in a life-altering situation similar to hers. “Absolutely, but I also wrote it for people who are in some kind of crisis, in order to give them hope, to give them a sense of life, and that there’s always going to be something good. You should live your life while you have it, and continue to hope, even though it feels tough sometimes.”
Rikke describes herself, more than once, as a determined fighter. She was adventurous – fearless – as a little girl; later, despite her father’s scepticism about girls playing football, she excelled at the sport. When she was married with children, she decided to cram the studying for a PhD study into one exhausting year, working round the clock and on holidays. Her fighting spirit emerges on every page of the book.
“It means so much that you say this,” she responds. “I had a doctor at the rehabilitation centre, who would say to me, ‘I need to know, Rikke – do I need to get a psychologist in here? Because it’s so rare that people are so positive as you are. Usually,’ she said to me, ‘I have to carry the hope for my patients, but I don’t have to do that with you. It’s amazing how positive you can be’.”
The hospital chapters were written in part from the extensive notes taken by Peter, a university professor and director of Copenhagen’s Natural History Museum. The entire process, she says, has been like writing “the biography of another person”, using doctors’ notes, medical records, and conversations with hospital staff.
Peter spent days and weeks at the hospital, rarely leaving his wife’s bedside, as well as keeping an eye on her condition and keeping the children going. “Peter is exceptional,” is how Rikke describes him now. “He has the ability to just put himself aside whenever there’s a crisis with me or the children. It has been hard for him, all of this, but he has this amazing ability to come through, and be a rock that we can all lean upon.”
The Blink of an Eye has aroused much media interest in Denmark, where, at the time of the interview, the book had just been published. True to form, Rikke has coped with it. “It’s been quite intense,” she acknowledges with a laugh. “Yesterday was the most intense day in my life so far, I think, after my illness. The Danish media went wild.” She was on television three times and also did radio interviews. Had her story been well-known in Denmark beforehand? “Not until yesterday, actually,” she says. “But I have had so many reactions, which has been lovely, from people that I know but also from people I have never met before. It’s been a lovely experience, knowing that people can use my story for something in their own lives. Now,” she continues, “I’m looking at people differently; I’m looking at people who are having a hard time, trying to see if I can help.
“It also has something to do with a thing that is very close to my heart – trying to see a person rather than just a patient, for example. To see the person behind the patient is really important.
“One of the times that I had most joy, in my spell at the rehabilitation centre, was when nurses or doctors came into my room and asked me how I was feeling, and what I had been doing previously in my life. That was so comforting and so encouraging, really, because I knew that, at those times, they saw a person and not just a patient.”
Graphicure, which is still in its early stages, is a company developing “a platform for patients to keep track of their treatment and their own data. She says: “We thought about this, because Peter and I would very much liked to have had a tool like this when we went through the illness. The first thing that happens when you become a patient is that you lose control, completely, like me, going through more than 20 different hospital departments, talking to lots and lots of doctors and nurses. They ask the same questions, and you can’t really keep track of what you have been going through. It’s really difficult.
“I mean,” she adds, “Peter and I are very resourceful people. We both have higher education, both with PhDs, and working in science. It’s very rare that you meet patients and relatives who have that many resources as we did. I’ve talked to so many patients who have just been lost in the system, and are feeling worn down by keeping track of their own treatment. I wanted to develop a system that could give patients some of their control back.” The English-language website is aimed at people in the UK and the US. “We have a US partner at the moment … We are hoping to go worldwide.”
In his foreword, Bryson (who hosted an event with Rikke at the Hay Festival last Wednesday) observes that no-one knows how many people exist in comas, but he quotes one neuroscience journal estimate that the global number is in the hundreds of thousands. “Few of those poor people,” he adds, “will ever be able to resume normal lives. Rikke Schmidt Kjaergaard is a brave and lovely exception.”
Has the medical profession’s understanding of patients being locked in, or what sometimes is referred to as locked-in syndrome, improved, to Rikke’s knowledge? “It’s very mysterious still,” she says, “and doctors don’t know very much about it, actually, because it’s so rare that they discover that there is a person in there who can actually understand what is going on. And it’s even more rare that that person comes out of it, as I did.
“I’ve written this book also to give something back to the brilliant doctors and nurses who took care of me. They told me there’s about a five per cent chance of surviving what I’ve been through, and often, when you survive this, you are most likely severely brain-damaged. There’s really not that many people who have the opportunity to communicate this at all. I’m a scientist, and I have my brain still, and it’s just amazing. I hope the doctors and nurses will learn what it is that patients like me are going through.”