2. Learn to speak medical language and communicate your observations. You’re not a medical doctor, nurse, or therapist, and you’re not supposed to be. But you need to learn and understand their language. You have to figure out how best to communicate with all healthcare staff. Use this knowledge to find the best way to share your own expertise, which will help foster a sense that you and the healthcare professionals are on the same team.
3. Introduce the person. Make healthcare staff see beyond the patient. No one knows the patient better than you. You know their personal and/or work life before the illness, habits, likes and dislikes. You know their values and beliefs. Share that knowledge with the healthcare team in a way they will be able to understand. Bring photos and share stories that help them see the person lying there in the hospital bed.
4. Record everything and keep track of changes. Bring a notebook or a portable device to the bedside. Use it every day. Write everything down. Include things you don’t think are necessary. Every incident and word. Every little detail. While sitting there by the bedside, you have all the time in the world. Use it to write down observations of all kind. What you see and hear. In particular, include the different things doctors and nurses say and do. There will be things you don’t understand. Write it down for you to ask about or look into later. Write it down to note patterns, inconsistencies, and things you notice have a positive effect.
5. Find allies. You won’t feel a special connection to every doctor or nurse caring for your loved one. Look toward healthcare professionals whom you immediately connect with, can relate to, and feel yourself bonding with. Talk to them. Draw them in and use them as a communication link to his or her colleagues. They will be a confidant with whom you can share more. With these allies, you and your observations will more likely be incorporated into the treatment plan, and thus have a positive impact on the wellbeing of your loved one.
6. Know that there are bad eggs. I’ve met more doctors and nurses than the average patient and I am deeply and genuinely impressed with most of them. But I’ve also met a few who should not be in that profession. I’ve seen arrogance and ignorance at times when my health critically depended on the opposite. This is a very difficult topics to deal with, but you have to. If you see malpractice or negligence, call it out!
7. Mistakes are made. There is never enough time in any healthcare system. Doctors and nurses are busy and every single day they make multiple decisions under a lot of pressure. Sometimes they overlook things, not because they are not good at their jobs, but because of a stressful work environment. If you see things that doesn’t seem right or pick up signals that staff don’t seem to register, let them know. It may be nothing, but it could also be something that would profoundly change the health condition of your loved one.
8. Be the eyes and ears of your loved one. If you think you’re struggling to comprehend what’s going on with your loved one’s health, imagine what he or she feels while lying in the hospital bed! Depending on the condition at hand the patient will be more or less cognizant of his or her situation, and you can play a key function as the careful observant and memory of your loved one. While they are working hard to get well internally, help them retain a sense of the external world. Tell that person what’s going on, explain details and do it with patience.
9. If something goes wrong you are the memory and voice of your loved one. All the things you have seen, written down, documented, felt, and talked about are useful if procedures fail. The better and more accurate your notes and observations are, the more meticulous you’ve been, and the more successful you’ve been in communicating with healthcare staff, the stronger your case will be if something goes seriously wrong and you have to deal with the legal system. You are, of course, trying anything in your powers to prevent that from happening, but sometimes even a single wrong call can have potentially fatal consequences. If a doctor on night duty on the day my illness broke out had sent me to the hospital immediately, I wouldn’t have fallen ill, lost my fingers—or written this book. Luckily, Peter’s detailed notes and recorded conversation with other healthcare professionals from that very same night helped to document the responsibility for the decisions that could have had a far worse outcome.
10. Don’t forget yourself. You’re important. Far more than you think. You need to take care of yourself or let others take care of you. People want to help. Accept what they offer: a home-cooked meal, a talk on the phone or in person, or getting out of the hospital to go for a walk. Lean on the wider support network. It might be bigger than you think. When I gradually returned to conscious life I was surprised and overwhelmed by the many words and tokens of love and support, and so was Peter. This may just be what you need to go that extra mile that can save a life. I wouldn’t be here if it weren’t for others and for that I am forever grateful.
Acknowledgments
Surviving a full-scale pneumococcal infection with everything from the early stages of sinusitis and pneumonia to aggressive meningitis, sepsis, multi-organ failure and long-term coma is rare. Even more rare is it for a survivor to be able to tell her story. Following my recovery, I was met with a great professional interest from medical staff who wanted to know about all aspects of what it was like waking from a coma to being locked in, and how I responded to their care and treatment. I started a new research project and took on a PhD student to help specialists understand all aspects of how Streptococcus pneumoniae works.
In the process of all this, I realized that I was speaking on behalf of the many thousand voiceless patients who had experienced something similar, or related as long-term illness. I could use the combination of scientist and survivor to provide medical professionals with new knowledge and, equally important, to give significant others insight into what their loved ones go through. The doctors, nurses, and therapists who had treated me persuaded me that I had something to offer to science, to friends and relatives and to other patients like me.
Many asked me to tell my story, because, as they kindly put it, they thought it could help and inspire others who needed hope and support. This book is the result of that. The reception in the UK has been overwhelming. So many people have shared their own personal stories and told me how they have found courage and comfort in my story. I have been deeply moved by this. Responses from readers of all kinds have reaffirmed that writing this book was the right thing to do. It was only made possible by the encouragement and help of a lot of people to whom I am forever grateful.
I want to thank all the patients and staff I encountered along the way, named and unnamed in this book. I am deeply indebted to the doctors, nurses and therapists fighting next to me all the way to recovery with compassionate care, enormous strength, and professionalism. Besides the anonymous specialists in the ambulance, the talented staff at the local hospital, at the university hospital and at the rehabilitation center, four people in particular have played a critical part in my survival.
There are so many amazing doctors involved in any journey of recovery, too many to single out within my story, but I do especially want to mention my GP Thomas Clausen, who was the first person to save my life; had it not been for his experience and capacity, I would not have been here today. The second person to help save my life was chief physician Lisbeth Liboriussen at the ICU at the university hospital; she went beyond standard procedure to mend the woman in front of her. The third doctor to help save my life was the chief physician at Infectious Diseases at the university hospital, Merete Storgaard; she gave Peter and me a strong belief in being able to pull through, no matter what, and gave Peter a purpose by letting him into the science of my illness. The fourth person to help save my life was chief physician Anne Rasmussen at Hammel Neurorehabilitation and Research Center; she boosted my confidence and made me believe in my own recovery when she asked the simple question: “How do you do it?”
Apart from my family, only two people are named in the book. In respect of their privacy, both of their real names have been changed.
Thanks to my colleagues and friends all over the world from Palo Alto to Hong Kong, who helped me carry on and believe in the future: colleagues at Aarhus University, the national research center Pumpkin, the Department of Science Studies, the interdisciplinary nanoscience center iNANO and Aarhus Institute of Advanced Studies, where I became a fellow while I was still in a coma; colleagues at Dissertation Reviews, some of whom I had never even met in person; colleagues at the MRC Mitochondrial Biology Unit in Cambridge and at Harvard Medical School in Boston. I would also like to extend my thanks to the Royal Danish Academy of Sciences and Letters, and the Young Academy.
I owe a special thanks to our neighbors, Eigil, Peter, and Poul, for their delightful company after my homecoming; to our friends, Graeme, Djuke, and Tony, who spent New Year’s Eve with us just before all hell broke loose and followed my gradual recovery with the greatest concern; to Annemette for showing up in the time of need; and to Tine and Merete for their invaluable help and patience discussing medical facts.
Writing this book has been a long process for me from the very first draft chapters to the finished manuscript. A number of talented and inspiring people have encouraged me along the way. I am grateful to Donald Johanson as the first outside our little family to believe in the project and encourage me to get an agent; to Sterling Lord, who never stopped believing in the book and to my agent Antony Topping at Greene & Heaton for always looking out for me with impeccable judgement. Rowena Webb has been a wonderful editor, always giving me a confidence boost when I needed it. A special thanks to Gillian Stern for her valuable editorial work and enthusiastic support to the very end, and to the extraordinary team at Hodder & Stoughton for their great help. Also, thanks to everyone on my publishing team at The Experiment. Special thanks to Jennifer Kurdyla, my ever-patient editor, and Matthew Lore for advice and encouragement.
Bill Bryson has been the most wonderful mentor and friend one can imagine. Heartfelt thanks go out to my immediate family, my mother and sister, who took hundreds of hours out to visit me, my father, Peter’s parents and sisters. I don’t know where I would be without them. Thanks also to Peter’s old friend, Thomas, who came down in the time of need as he always does, and my flock of aunts, who came to the rescue when none of us had the strength to do a belated spring cleaning of the house.
I have dedicated this book to my children, Daniel, Victoria, and Johan, who showed remarkable bravery and faith, and to Peter for being there—always. Peter gave me information when I had none. He was not only my emotional support, but also my main guide through this experience. Peter, in a sense, is how I came to understand what had happened, especially during the first crucial months when I was unaware of where I was, and was trying to regain memory and to understand how things had changed. It means everything to have support and love when you are fighting to get your life back.
About the Author
RIKKE SCHMIDT KJÆRGAARD is a scientist, mother of three, and cofounder of Graphicure, a start-up company developing software solutions that empower patients to better understand their disease and manage treatment. She is also the cofounder and CEO of the Danish Science Club, a mentorship network for children and young adults. Prior to her illness, she was an associate professor at Aarhus University. She holds a PhD in science communication, with past positions as a postdoctoral fellow at MRC Mitochondrial Biology Unit in Cambridge, UK, and at Harvard Medical School. In 2012, she was elected Member of The Young Academy under the Royal Danish Academy of Sciences and Letters.
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The Blink of an Eye Page 16