Introduction
- Years ago, I never would have written this. That’s because years ago I would have been dead.
- Struck by what was then called intestinal tuberculosis, my Great-aunt, Catherine Kiss, suffered all the manifestations of the disease I now have and one that is known to travel genetic lines, Crohn’s disease.
- At the age of 24, delirious with fever and weighing just 60 pounds, she died.
- I, too, have had Crohn’s disease hallmarks and have lived through 5 major surgeries, swallowed buckets of pills, and undergone stacks of tests. But now I have lived 14 years longer than she did and will likely continue to live and thrive, despite having an illness that nearly killed me more than once.
- Because of the advancement of medical technology, there is an explosion in our numbers. Diabetes, heart disease, and cancer patients can, for the most part, look forward to the same things that I do as advances in early detection, diagnosis, and treatments have rendered even the scariest diseases into chronic states with possible acute phases.
- Autoimmune diseases have been identified and treatments developed for them, leaving less of a death toll in that area as well and allowing the individuals who have those diseases to pursue lives as fulfilling as the ones who are entirely well.
- While we share so many of the characteristics of individuals who have never faced diagnosis and treatment for grave diseases, we are different from them and we know it. Once you have had the experience of having the length of your days threatened by a serious illness, you are never, ever the same.
- Life after a diagnosis and treatment for a life-threatening illness can have unexpectedly positive attributes, as this generally is a life of greater strength, of newfound wisdom about what is really important.
- It can be a life in which there is a growing respect for nurturing relationships, where emotions and general tenderness are more easily felt and dealt with, where time takes on a new characteristic, and where there is a greater commitment to the well-being of the body.
- This is where trivial issues and relationships are recognized for what they are and dismissed. It is a life where helping others through the rough times takes on a greater significance than it ever did.
- Individuals have a hard time accepting the loss of life to which they simply felt entitled, a life that others have and don’t seem to appreciate. Now, however, we are given a life marked by grief over the loss of what we thought should have happened and the impenetrable sadness over what has happened.
- We struggle with a life that did not return to its normal and anticipated trajectory following the experience of diagnosis and treatment, yet will continue for a long, long time.
- We are blessed by our good fortune of having second or more chances and haunted by the experience of having stood at the abyss, knowing that someday we must return.
- This new state of survivorship is something that has not been written about in the past. There is an expectation that continues to be held by the medical establishment and by those who have not experienced illness that once treatment is successful – no matter how scary and physically awful it was – the patient will no longer be a patient and that life will return to its prediagnosis state. There is little in the way of programs to facilitate social and emotional well-being for long-term survivors.
- This is one of the first books exploring the lives of survivors and to look into the positive and negative aspects of illness. I now realise what is really, really important in my life, something that usually doesn’t happen until late in life, if at all.
- I started researching the topic and began interviewing over 100 survivors of chronic and acute life-threatening illnesses. That was when my eyes were opened to this huge community, their shared experience, and their needs.
- The book is divided into 3 parts. The first, ‘Starting at Point A,’ comprises the first three chapters, which provide an individual and global view of survivorship; it also lays the groundwork for understanding the five gifts of illness as they are presented in the next part.
- The second part, ‘Finding the Five Gifts of Illness,’ cuts a brand-new path in the understanding of illness – the process of finding worth in suffering. The following five chapters highlight individually each of the five gifts of illness.
- Using excerpts from interviews and information from published studies, I show the positive transformative effects illness has on a person’s life.
- The third and final part of the book not only establishes the value of the five gifts, it offers suggestions for individuals to attain the gifts and for the greater humanity to create a nurturing atmosphere for survivors.
- Books on cancer alone could fill a library, not to mention other common diseases. Those who are sick absolutely should have those books to help make the best decisions regarding the course of treatment and to enable them to become the best advocates for their own health.
- I hope to dismiss for ever the received wisdom, passed down through generations before us, that illness is completely dreadful and entirely devoid of redeeming value. My hope is that the reader finishes this book learning and believing that there are attainable, positive transformative effects within the experience of serious illness – worthwhile and life-altering gifts for those who undergo the experience.
PART I: STARTING AT POINT A
Chapter 1: My Story: How the Hell Did I Get Here?
- You know the feeling – you start at point A, arrive at point B and for some reason the journey was erased by whatever it was that captured your attention. That is how I felt when I stood in the stark October sunlight one afternoon in 2002, watching my son racing through a playground.
My life before my illness
- It was 1989; I was barely 20 attending Wayne State University; I was a straight A student; my large extended family was supportive of my efforts; I had a great group of girlfriends; and I had met a really sweet, handsome man. Life was good.
My life with illness
- So when the stomach pains started on the morning of February 1, I didn’t really lend them much weight. I staggered across campus, eventually giving in to the nausea and pain and driving home. Persistent vomiting without any relief from pain forced me to the emergency room at a local hospital. The pathology report later confirmed the discovery of Crohn’s disease.
- He told me how the disease was treated and that there was no known cause or cure for it. But what I am sure he didn’t know was how much my life would change from that moment forward.
- To say that my life truly sucked would be accurate. One by one my friends stopped calling. It has been 16 years since I have seen or heard from any of them. My relationship with Joel suffered. School was not much better but I stuck it out, earning my lowest grade point average ever but retained my scholarship.
- I was depressed. I grieved for the life I had before that moment when I first heard of Crohn’s disease. Even though my symptoms could be traced back for more than a decade, it seemed that I had crossed a line that very second, from being among the healthy to being among the sick.
- I hated my new life. I hated being sick. I didn’t want any of it, and I couldn’t believe my great misfortune.
Life throws another twist
- Fast forward 13 years to that playground I mentioned earlier. I was talking to someone I’d known for a month, someone I discovered had gone though a very serious disease and its treatment and was now in remission. I was struggling through a flare-up of my own disease.
- I suggested that Crohn’s disease, as awful and physically degrading as it was, had a really profound effect on my life in a positive sense. This person agreed and we ticked off changes in our lives – positive things. Our definitions of success had changed. The direction and the meaning of our lives altered because of the experience.
- Now it struck me that the individuals with whom I had spoken were all well and had never gone through the experience of illness. I started interviewing people with acute or chronic potentially life-threatening illnesses. I put my hands on every conceivable research study on the subject, trying to find out what the experts had to say about it. The result is the book you are holding.
Where we are going
- It seems that, no matter what the disease, we all suffered physically, mourned our misfortune, and at some point began to see how our lives had changed in a positive way.
- I can’t share with you a specific process of getting from point A to point B. Everyone is different, and I have learned that every journey is different. We have to meander through a new and uncharted course of learning to let go of what we felt we were entitled to while clinging to our second chance, giving what we can to do it justice, and hoping it doesn’t end too soon.
- Now I am a medical writer, a career path very much influenced by my disease experience. I am not an expert in anything but my own experience, but it was valuable and I hope to share it and others’ experiences with you, the reader.
Chapter 2: Survivorship: A Growing Community
- Surviving chronic or acute life-threatening illness is a relatively new concept in the history of civilization. If you were an American at the turn of the last century, you could expect to live about 47 years on average. If you developed a life-threatening acute or chronic condition, you could pretty much forget about planning your retirement. 20% of cancer patients in 1930 lived to see a 5-year survival or beyond.
A current view of survivorship
- Today, an American has an average life expectancy of 77.6 years. Much of this improvement is attributed to the development of antibiotics and vaccines, and increased knowledge about how hygiene, food safety, healthful diet, and exercise increase our chances of remaining healthy and living longer.
- Medical knowledge has made extraordinary advances creating an ever larger pool of survivors. Cancer accounted for 554,643 deaths in the US in 2003. But whereas the survival rate in 1930 was 1 in 5, nearly 2/3 of all people diagnosed with cancer today can expect to live 5 years or more after diagnosis.
- Diseases that would most likely have killed a person quickly within the past century are now, to a large extent, highly treatable, if not curable.
Survivors reflected in culture
- While medical and surgical science of survival has accelerated, the art of navigating life beyond diagnosis and treatment lags woefully behind.
- Lance Armstrong, a champion bicyclist, detailed his struggle with advanced-stage testicular cancer in his first memoir Its’ Not About the Bike: My Journey Back to Life, and again in his follow-up book, Every Second Counts. His foundation (LAF) has made its mission advancing the case of cancer survivorship and a report issued in 2004 sets forth a strategy through education and support services.
A growing field of study
- Studies tend to concentrate on the financial/career extinction burden of illness. Harder to see but no less valid, are the positive effects of illness on an individual’s life, the gifts of illness. Only a small number of papers have focused solely on the positive transformative effects of illness and survival, despite the fact that some significant research has shown that finding positive aspects in the illness experience can ease the transition to long-term survival.
Understanding the whole picture
- Even in the most populated areas, the support programs that helped people to accept the diagnosis and rallied them through the initial treatment are generally not designed to support the long-term patient.
Moving on
- In the next chapter, I outline what is known about the grieving process that follows the diagnosis and treatment of a life-threatening illness. This will lay the groundwork for the introduction of the five gifts of illness in Part II.
Chapter 3: Grief: From the Diagnosis and Beyond
PART II: FINDING THE FIVE GIFTS OF ILLNESS
Chapter 4: Illumination: Finding Meaning and Worth in Suffering
That which does not kill me makes me stronger
Friedrich Nietzshe, philosopher
- Before seeing these gifts of illness, which are individually highlighted in the next 5 chapters, many of the individuals went through what I call illumination.
Fight or flight
It’s not whether you get knocked down. It’s whether you get up.
Vince Lombardi, professional football coach
Finding a reason for the illness
To survive is to learn to live, because the skills and attributes of survivorship are not innate, they are learned.
Ellen Bushkin, cancer advocate
Finding deeper meaning in illness, in life, in surviving
He who has a why to live for can bear with almost any how.
Nietzshe
- Dr. Viktor Frankl’s 1946 book Man’s Search for Meaning details his experience as an inmate in several Nazi concentration camps during World War II. He wrote of the elements of life that helped to sustain him during that time. He survived the nearly unsurvivable conditions and experiences by finding meaning in his suffering, something he believed was an active choice. “If there is any meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death, human life cannot be complete.”
- How a person handled suffering influenced the meaning conveyed by the experience. “The way in which man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult circumstances – to add deeper meaning to his life. It may remain brave, dignified and unselfish. Or in the bitter fight for self-preservation he may forget his human dignity and become no more than an animal. Here lies the chance for a man either to make use of or forgo the opportunities of attaining the moral values that a difficult situation may afford him. And this decides whether he is worthy of his suffering or not.”
- Sometimes just finding a reason to go on gives people the gumption to continue, at the same time imbuing the lives of the sufferers with greater depth. “When we are no longer able to change a situation – just think of an incurable disease such as inoperable cancer – we are challenged to change ourselves. In accepting the challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end.”
- “There is nothing in the world that would so effectively help one to survive even the worst conditions as the knowledge that there is a meaning in one’s life.” Deriving meaning from one’s life may not be an easy task. It is a journey that people often postpone until such time that they must face their own mortality, experience suffering or undergo a life-changing experience.