One of the more recent publications by one of my favorite authors, fellow blogger, and sister “spoonie,” Joanna Charnas, delivers a string of useful tips and tricks for effectively managing anxiety and stress while living in this new world plagued by a communicable disease. The advice offered in Charnas’ new book, entitled Tips, Tools, and Anecdotes to Help during a Pandemic, acts as a simple and pragmatic guidebook for healthy living in a global pandemic by centering on skills that build both physical and mental resiliency. For instance, practicing mindfulness while systematically acting out your morning routine or changing your perspective to focus on the positive aspects of a situation can significantly improve one’s outlook or perspective on a given event, even if the situation may have been difficult to handle overall. Sounds simple, right? That is because it is! Unfortunately, as humans, we are biologically wired to focus primarily on the negative aspects of a given situation as an evolutionary defense mechanism for self-preservation when facing either a real or perceived threat of harm (Hanson, 2013). Nevertheless, this book delivers an ample number of reminders to help readers gracefully and consciously navigate an assortment of novel challenges that are common in the modern world, including those common to Coronavirus or COVID-19.
What I love most about this book was the fact that Charnas not only offers solutions for managing difficult times, but she also supports each one of these practices with personal stories that include how she put each tool to use in her own daily routine. I’m honestly still fascinated by how many habits and synchronicities I had in common with the author, but I also discovered a ton of new ideas that I’d like to add to my own schedule and routine to make things a little bit easier on myself at the same time. Overall, I recommend reading Tips, Tools, and Anecdotes to Help during a Pandemic because it is quick, easy, and highly relatable with an abundance of tips, tricks, tidbits, reminders, and stories of how to effectively pilot individual or collectivist crises – both in and out of a major pandemic – by simply applying techniques of meditation, mindfulness, positivity, and basic stress reduction practices in order to create a much happier and healthier way of living via homeostasis.
A couple of months ago, I was asked to write a book review on the first novel in the Berserker Series called Joshua and the Shadow of Death by author Gary McPherson. Unlike most of the literature that I spotlight and/or review on this blog page, which generally consists of a combination of published medical research, chronic illness self-help books, and occasionally other forms of scientific or non-fiction-type writing, Joshua and the Shadow of Death is a fictional thriller that is premised on resolving the mystery behind the suicide of Harold’s adoptive father, Richard Brown, as written from the perspective of the family’s psychiatrist and personal friend, Joshua Zeev. In cohorts with Dr. Zeev to resolve the remaining questions left behind in the wake of Mr. Brown’s tragic death, a significant portion of the story-line of this book centers on Harold’s (or Harry as Dr. Zeev calls him) mental health and controlling the symptoms of a rare, hereditary psychological disorder known as Berserker Rage Syndrome or Blind Rage Syndrome.
The chief symptoms of Berserker Rage include “sudden, impulsive, uncharacteristic violence” in which “the usually nonviolent, peaceable patient savagely assaults others (often strangers); experiences amnesia during episodes of ‘blind rage’; angrily overreacts to an actual external stimulus toward which the rage is directed; episodically exhibits extraordinary physical strength and relative immunity to injury; and is, by definition, not under the influence of drugs or alcohol, brain damaged, nor suffering from other major mental illnesses” (Diamong, 1996, p. 167-168). This exhibition of both violent and aggressive behavior amid those affected with Berserker Syndrome, however, theoretically results from the presence of monoamine oxidase A (MAOA) genetic variants – some of which have traced back to the historically debated “Berserker Vikings,” a legendary and “sinister brotherhood of warriors” originating from Scandinavia that were perceived social outcasts because they burgeoned “on the border between life and death, fueled by war and distinguished by the ecstatic battle fury” while stuck in trance-like state (Hjardar, 2018, para. 2). Interestingly enough, my own genetic testing affirmed that I also have what is called “The Warrior Gene,” which is extremely fitting considering the amount anger, rage, and frustration I have personally experienced not only in learning to live with multiple rare medical conditions, but also in learning how to deal with the difficulties in communicating my own pain and symptoms to friends, family, and the medical community as a whole.
At this point in time, the American Psychiatric Association has yet to formally categorize the constellation of symptoms associated with Berserker Rage Syndrome as its own entity in the Diagnostic and Statistical Manual of Mental Disorders (DSM) outside of the more general psychiatric diagnosis of Intermittent Explosive Disorder (IED), which is a type of “impulse control disorder marked by problems controlling emotions and behaviors, and result in behaviors that violate social norms and the rights of others” (Coccaro, 2018, para. 1). However, Berserker Rage Syndrome is still clinically perceived as a legitimate psychiatric condition by many mental health experts, who argue the difference between the two conditions is that Berserker’s includes the genetic predisposition towards violent and aggressive behavior and thus programmed into the nervous systems of Berserker patients via explicit heredity patterns as demonstrated in a multitude of other physiological and psychological behaviors and disorders throughout human evolution. Accordingly, one of the primary challenges in unravelling the conspiracy behind Mr. Brown’s suicide concerns Harold’s ability to not only overcome the overwhelming sense of grief and loss over the death of his adoptive father (and, later, his mother), but also learning how to deal with the functional limitations of a mental health condition that’s no fault of his own in order to have the strength uncover the surprising and truths hiding just beneath the surface of consciousness in this novel.
In addition to being given an opportunity to both read and review this book, however, I was also provided the privilege of interviewing the author of Joshua and the Shadow of Death, Gary McPherson, to converse about his own experiences in living and working with a chronic rare condition called Behcet’s Disease (along with some other chronic comorbidities) as well. For those of you who aren’t familiar with Behcet’s, this syndrome is best described as “a rare, chronic, autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body” (American Behcet’s Disease Association, 2014, para. 1). The principal symptoms presenting in this condition include the onset of flu-like symptoms, painful round or oval sores on the mouth and/or genitals, acne-like sores and pus-filled lesions on the skin, nodule development on the front-side of the legs, eye inflammation or blurred vision, vasculitis or thrombophlebitis in both the small and large veins, central nervous system dysfunction, and joint pain, swelling, or redness just to name a few (Genetic and Rare Diseases Information Center, 2018). Although Behcet’s is clearly a physiological disorder in nature – as opposed to Berserker’s Rage Syndrome, which is a psychiatric condition – there is still a definitive connection between the author’s personal history both in being adopted and later receiving a diagnosis of a relatively rare genetic disease and the character development of Harold. As with most things in life, we all know there is often some hidden truth laying buried within the fiction and the line used to separate physiological and psychological ailments is vividly fine at best. Nonetheless, here are McPherson’s answers to my interview questions pertaining to how this devastatingly rare, genetic disorder impacted his life and work – both leading up to and following diagnosis.
In the press release released by JKS Communications, it states that you did not receive a diagnosis of Behcet’s disease until you were 32 years old. When did you first start to experience symptoms and how long were you “undiagnosed” for afterward?
I first exhibited symptoms at 9 weeks old. I had crops of sores coating my mouth and throat that lasted a couple of weeks, according to my mother. I was unable to take a bottle. It was very traumatic for her. I continued to have those symptoms, including very high fevers, very high white blood cell counts, and other symptoms up until I contracted Uveitis at age 32. Uveitis led the doctors down the correct path to my diagnosis.
How many doctors did you visit before you received a diagnosis?
In the year they diagnosed me alone there was a team of five ophthalmologists, my primary care, and a team of rheumatologists—I dealt only with the rheumatologists’’ expertise in Behcet’s.
Did any of your doctors minimize your symptoms and/or infer that your condition was “all in your head”? If so, how did that make you feel at the time and did it influence your career as a writer?
The bigger issue was doctors misdiagnosing. I have been tested for everything from Herpes to Leukemia to AIDS. That experience did influence my writing of Joshua and the Shadow of Death. Joshua’s misdiagnosis and trial and error with Harold’s childhood are part of what drives Joshua’s narrative in this first novel.
What was the hardest part about waiting for a diagnosis?
Being adopted, I never knew if it was a common genetic problem, or worse if it was something I could pass on to my spouse. There were times I wondered if I would survive, with good reasons. I once survived a fever of 110 degrees. When I was diagnosed at age 32 the symptoms were so advanced; I was given less than 5 years. That was 20 years ago. I keep telling my doctors to hang in there, one of these years they’ll be correct.
The press release also mentions that your “battle with Behcet’s, which has also caused Fibromyalgia and Fibromatosis, make it difficult to physically type” and “slow” down your writing process. What type of things help you to overcome the physical limitations of your conditions on really bad symptom days?
When people would ask me this question in the past, I used to joke that it was better living through Chemistry. Unfortunately, my body is now resistant to common, opioid-based, pain medicines. There are a couple of muscle relaxers I can tolerate in very low doses. Unfortunately, the way I deal with it today is to stop writing when I have a really bad day. To help offset this, I try to take advantage of the good days. On average, I can get in two hours a day, three days a week before needing to take a day off. In the winter it’s less than that.
Do you find it easier to work through pain or take a break if your body is telling you to do so?
I have learned it is better to take a break. I used to try to fight through it. The result was either gibberish on the page or a version of writer’s cramp that would lock my fingers in place for up to two days, even with muscle relaxers. Dealing with the ever-progressive pain has been the toughest part at this point in my life. In my younger days, I worked as an IT Manager, and I was full speed for 365 days a year. It’s been tough learning to put on the tortoiseshell and slow down.
Which symptom(s) do you think limits your ability to write/work?
I have tendonitis and Fibromyalgia in my hands. Also, I have neuropathy in my forearms. All three of those together are what stop my writing on a normal day. Although Behcet’s has taken its toll, it’s these secondary symptoms and diseases that have finally knocked me down several notches. In addition, I injured my back when I was in my early 20’s. Behcet’s loves to go after areas that are already damaged. So, sitting or standing for too long can make me forget about my hands, in a bad way.
There are a lot of running themes and interesting characters, relationships, and critical subjects that are touched on throughout Joshua and the Shadow of Death. How did your personal experiences in having a rare disease and other chronic illnesses influence you to include these elements in the book during the writing process?
For the first book in this series, I wanted to do something different. I’m telling the story from the doctor’s point of view, as opposed to the characters with the disease. By thinking through how people see me and my challenges, Joshua and the Shadow of Death gave me an opportunity to allow the reader, and myself, to experience what it is like to have an unknown condition from the viewpoint of people close to the patient, as opposed to the patient. Of course, this is a mystery thriller, so I took that relationship dynamic and placed it into the thriller narrative.
Out all the main characters in the book, who do you think you personally resemble the most and why?
I love answering this question because it is an easy one. Harold is 100% me. From his sense of humor, his need to protect his friends and family, to his medical condition. I only wish I was 6 foot 5 instead of 5 foot 8.
Was there a reason that developed the plotline of the book around psychiatric illness rather than chronic illness? If so, why?
There is a twist to my real-life story. I am adopted. My adoption left us with a big mystery even after successfully diagnosing Behcet’s. It is very rare in the U.S. 25,000, give or take, but in the Middle-East and East, it is a common disease. My bright blue eyes, fair skin, and bald head with a touch of gray on the side do not appear to be all that Eastern. For the disease, it turns out my unknown father was of Turkish descent. My birth mother had immigrated to the U.S. with her family from Denmark, so I’m half Danish. Being half anything in the U.S. is exciting since, as Bill Murray put it once in Stripes, “We’re all mutts.” Researching Dane’s history brought me to the Vikings and the Berserkers. That gave me the idea of creating two orphan half-brothers who did not know they were berserkers in modern-day America. This series gives me the ability to pull in every angle of my life.
Do you know anyone, or have you ever met anyone, with Berserker/Blind Rage Syndrome?
There are a lot of stories with people going “Berserk” in battle or emergencies in contemporary times. The Berserker in this series is a combination of fiction and fact. I researched original legends, as well as original “accounts” by the Vikings as well as their enemies. I also researched modern-day examples of people going “Berserk.” I took all this information and created a modern-day Berserker.
Managing health and wellness when you have a chronic illness and/or rare disease is often maddening at times and it’s easy to see how you made the connection between the Berserker Legend and Behcet’s Disease. Has your experience with have Behcet’s Disease, Fibromyalgia, and Fibromatosis ever sent you into an episode of rage? If so, can you give an example and discuss how the episode was resolved?
When I was young, crops of mouth sores were common. Growing up in the ’60s, ‘70s and early ‘80s, roughhousing was common. Unfortunately, hitting me in my mouth when I had sores always triggered a rage. My older brother, who could easily take me as a kid, ended up on the wrong end of my rage one day. He accidentally hit my mouth when we were roughhousing, and I ended up knocking out one of his baby teeth. He got tooth fairy money, so it ended okay. Normally I would hit inanimate objects as I do not hit people as a habit.
Do you have any advice for those living an undiagnosed physical or mental illness on how to get a proper diagnosis and/or the best medical care?
Be your own advocate. Make sure you keep copies of your medical records. There is a lot of groupthink in the medical community. If you have a rare, or unknown disease, try and find a doctor who is open-minded and willing to research every possibility around your condition.
I would add there is a new wrinkle with modern medicine: WebMD and other online medical sites. One of the worst things you can do is tell your doctor you read something online. The exception to this scenario is finding information from medical colleges. I was very fortunate; I started my career at Microsoft in 1992. I had access to the internet before people knew what that was. When I was diagnosed in 1997, I knew how to query and bring up research papers from places like MIT or Boston College. Take the time to educate yourself on how to find medical information your doctor will value. My doctors were always impressed with the medical school articles I would bring to them when I had questions on experimental treatments or possible complications.
What advice would you give to other inspiring writers that may be suffering from a chronic and/or rare disease?
First, if you want to earn an income writing, this is a marathon, not a race. Even healthy people can take years to see their work produce an income that will support them. My financial goal with writing is to one day be self-supporting again. As I like to say, at 52 I prefer to be depositing into Social Security, not requesting an early withdrawal because my body has managed to disable itself.
Let’s put aside economics and focus on the craft. The most important advice I can give is this, permit yourself to work at your own pace and style. That action will set you free to write the way that works best you. The biggest killer to the creative process, in any discipline, is the inability to create in your way. (G. McPherson, personal communication, December 7, 2018).
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My high school graduation gift – the original Walden Wahine Blue Funboard. Photo by Undiagnosed Warrior (2002).
As any avid reader will tell you, it’s really quite rare for a book to find you rather than the other way around. But that is exactly what happened with Jaimal Yogis’ third book entitled All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. More times than not, the reader selects their next material based on their individual interests or as a way to fulfill an empty segment of the self in some manner. For some people, books bring with them all the adventure that may be missing from one’s life; other stories may appeal to more intrinsic motivations of the reader, perhaps offering the integral preservation of the self as if the words and the wisdom divulged in the ink shares the hidden secret of the world, the true meaning of life, or what you need to do to be happy. My go-to reading material, on the other hand, would put most people to sleep: college textbooks, medical journals, research studies, psychological theories, and self-help books about coping with chronic illness. Although my personal interests were much more diverse before I became really ill, both science and research were pretty much the only running theme for which I came to understand the social environment. I am far too analytical to find truth any other way. I should also preface that I’ve never made a commitment to one religion or belief system over another yet have always considered myself highly spiritual according to my own definition of the word. This was the only way that I could reasonably explain my natural attraction to the ocean or the way that large open bodies of water always made me feel at home, particularly in providing much-needed peace within the surrounding chaos of the outside world. All I’ve wished for lately, though, is some semblance of calm within this storm so that I could securely ground myself once again.
“Psychologists say blending into our surroundings is a feature of having thin boundaries versus thick ones. In decades of studies, thick-boundaried people see themselves as part of firm groups (“we do this; they do that”). They see the world as separated into good and evil. They don’t recall dreams well or feel unified with the diversity of the world. Thin-boundaried people remember many, often wild dreams. The border between self and other fall away from time to time. It’s easier for them to feel empathy, but the thin-boundaried sometimes struggle to say focused” (Yogis, 2017, p. XVII-XVIII).
This book review is long overdue as a result of the endless disarray that has taken over my life as of late. In addition to my health declining and my symptoms worsening, my ability to read and write is becoming progressively compromised as I can’t seem to concentrate long enough to put words together that make sense without significant effort and medication anymore. It’s also been challenging to manage my symptoms after recently losing multiple doctors and, therefore, having to find new providers willing to take over where the other doctors left off. Not to mention the fact that I’ve been trying to get through the final semesters of college by taking courses that unnecessarily require at least three or more different writing assignments per week. Thankfully, I only have 2 more classes left until graduation. It’s just been extremely hard to manage anything more beyond medical appointments and academics, so I apologize for the long pause in between updates. Perhaps this is one of the many reasons reading All Our Waves Are Water happened at just the right moment because, if we’re being honest here, it’s been getting harder and harder to stay positive about the future when you’re constantly dealing with one setback after the next. I mean, how are you supposed to maintain hopeful about the future when all you have to compare to is the mundane life you’ve felt stuck in for years? It doesn’t help any that I’ve been overly consumed with thoughts of permanent and total disability with the latest developments in my quest for a diagnosis – the final answers still remaining. Regardless, questions arising about the future continue to be difficult to answer with any definitely, but isn’t that case for all of life’s greatest questions regarding one’s spiritual path and purpose? At least that’s what the author of this book set out to answer in sharing his anecdotes about adversity, whether in love, in travel, in surfing, and eventually in reaching spiritual enlightenment – but perhaps not in the way that you’d expect from a spiritual novel on surfing.
“…the tube was the perfect metaphor…The definition of a wave is a “disturbance moving through a medium,” and the memory of wind is spiraling through the medium of ocean. Atoms, molecules, cells, are bouncing air’s message in an endless domino effect – a game of telephone. Each swell is a sort of ghost, an illusion that only looks like a firm set of matter in motion. And people are too. We look firm with our cookie-cutter parameters: head, shoulders, knees and toes. But the bits of matter that compose our bodies are constantly getting traded out by new water, new food, new air, new chemicals. There is no static amount of stuff that stays with us from birth to death…” (Yogis, 2017, p. 76-77).
The first thing you’ll notice when initially thumbing through the pages of All Our Waves Are Water is the fact that some chapters of the book are cut perfectly straight and narrow, while the edges found in other chapters are clearly jagged and mismatched by comparison.
This distinction in the boundaries physically represents one of many stunning metaphors found within the broader context of the book, whereas the true meaning and eloquence of these metaphors are better illustrated in the author’s tales of surf trips in exotic locations, recollection of events while in the pursuit of a graduate degree in journalism, struggling with the acceptance of adulthood at the start of a professional career, and stories of lost relationships that led to newly found friendships that ultimately composites Yogis’ mystical journey towards spiritual enlightenment. However, a lot of what is written in All Our Waves Are Water is not what you would normally expect from a traditional surfing book, though the ocean and surfing act as the underlying metaphor equating to spiritual and emotional transcendence into adulthood. Surfing and spirituality also participate in the author’s memoirs as both the antecedents and moderating variables that distinguishes life’s successes from perceived failures, acceptance from frustration, or happiness from sadness if you will. Nevertheless, Yogis does a great job at blending spirituality and surfing into the storyline as his inner voice speaks to readers using the same dialogue that we all use to converse with our friends about our experiences, while combining the positive and negative self-talk into the dialogue as either a question or guide for achieving one’s greatest path in the journey.
“This time around, for whatever reason, I had to keep close to the sharp earth and human chaos. This wasn’t the happy path or the sad path, the perfect path or the imperfect path, the caged path or the free path. It was just my path. I had to look into my heart and trust it because nobody knew it, and nobody could walk it, but me” (Yogis, 2017, p. 186).
Aside from the apparent wisdom that comes along with any spiritual growth and development, the author’s internal conflict over settling into adulthood or fleeing from the modern world also brings with it an experience that nearly all readers can relate to in learning how to adjust one’s expectations for the future to fit within the reality of personal circumstances. This, more than anything, resonated with me on a deeper level than any of the lessons found amid the author’s chronicle of events because I honestly have no idea what I am going to do with my life after I graduate from school, especially as I watch every opportunity for recovery slipping away as one treatment fails me after the next. I know we all question the future to a degree, but it’s even more so when you have a chronic illness because it’s next to impossible to plan a future when you can barely commit to plans you made for later that same day. I’d take physical pain over the unknown time and time again; life’s a lot less stressful that way.
“We all know that we could go any day: a car accident, a brain aneurysm, a heart attack, a bullet. Rich and poor, black and white, gay and straight, nothing protects us. We know this, and yet we don’t know it. We move through life as if we have forever, as if we can take a stroll around the block, the cappuccino made unusually well, the Tuesday fusilli, for granted. We live as if there will always be a million more like this. So we filter out the details. We go on stressing about accumulating achievements the big impressive things. But the big impressive things we hold up as the meaning of it all – success, the house on the hill, the shiny car, the World Series title – the things we decide are worth filtering out the little things for – are they so great?” (Yogis, 2017, p. 228).
One of the main things I loved about All Our Waves Are Water is that it provides a myriad of metaphors to help readers examine the overall quality of their lives. It was also a pleasant, but unexpected, surprise to find that a lot of the symbolism in the book seamlessly applies to the expressive nature of both physical and mental illness.
“You couldn’t run away from sadness any more than a river can run uphill… Life was sad. Really sad. Loss. Sickness. Cruelty. Death. There was no way around it. But sadness, when it was always allowed to be itself, was strangely not sad. Sadness was just sadness. Tears just salt water” (Yogis, 2017, p. 41).
Yogis’ accounts also offer readers critical lessons in coping with the pain and disappointment that’s inherent to the inherent obstacles to health and well-being when you’ve been diagnosed with a physical or mental disease as well.
“…the ‘run-of-the-mill person,’ when shot with an arrow, ‘sorrows, grieves, and laments, beats his breast, becomes distraught. So he feels two pains, physical and mental… the pains of two arrows.’ The person trained in mindfulness, however, when shot with an arrow, feels only the physical pain and ‘does not sorrow, grieve, or lament, does not beat his breast or become distraught. So he feels one pain: physical, but not mental” (Yogis, 2017, p. 190).
Could something so minimal and nearly effortless such as mindfulness be the hidden secret to having a happy life? Maybe, maybe not. But isn’t it worth trying to find out? Plus, it’s hard to argue against all the scientific research that suggests that practicing positive psychology can teach chronic illness patients how to effectively cope with pain and symptoms, thereby improving therapeutic outcomes and minimizing the need for pharmaceutical interventions in treating physiological and psychological disorders (Ghosh & Deb, 2017).
“In other words, you witness what’s in front of you – breath, sensation, thoughts, feelings – without trying to change what’s in front of you… scientists now know that doing this simple act every day increases immune function, decreases pain and inflammation, increases positive emotions, decreases depression, and on and on. Doctors are now prescribing mindfulness for everything from back pain to postpartum depression. But for early Buddhists the point was not only getting better grades, fewer colds, and feeling a little happier. It was to actually end suffering – like, for good. Thoughts create reality, when the thinking, and suffering is an experience in the mind. Master your thoughts – or simply let them be without constant reactions and identification – and you master reality. You master being” (Yogis, 2017, p. 37).
Whether you have a chronic condition or not, there’s still quite a lot to learn from this book since it’s full of the raw emotions that consistently thwart and frustrate personal growth. Part of the trouble with trying to gauge personal happiness and success accurately is that the only thing we have to compare these variables to is the modern standards that American’s use to measure and define levels of success, such as beauty, productivity, and income – none of which come even close to resembling any aspect of spirituality and enlightenment. Still, perhaps the most important lesson found in the entire book is learning how to adapt to the ebb and flow of the waves of life by approaching conflict in a similar manner as waiting for the perfect set of waves to come. While wading in the water, you can either become restless and angry or you can accept the fact that the ocean is out of your control. In other words, there will always be difficulties in life – it’s simply unavoidable – but it’s how you choose to handle or perceive each individual setback that will ultimately regulate the amount of pain or suffering you experience as a response. Personally, I’d rather bask in the sunshine than not feel the water at all.
Waiting for that perfect wave while surfing Sebastian Inlet. Photo by Undiagnosed Warrior (2002).
“There are cycles. Some patterns repeat. Some are shocking flash floods. But here is the thing about storms. I don’t wish them on you, but they are coming and would you want it differently? What would we talk about? How would we become strong? How would we get off our lazy asses and look into what is actually going on here? What would we celebrate? Storms, after all, have that rare power to bring us – yes, we humans who love to devour each other and put it on TV to watch again – together” (Yogis, 2017, p. 230).
The hardest decision in life essentially lays in the choice to either run from the storm or ride it out. The only person with enough power to settle on the best course of action, in this case, is you – no one else can choose a path for you. It helps when friends and other loved ones support your journey by offering enough encouragement and motivation to push you forward in attaining your hopes and dreams for the future, even if there may be many obstacles left to overcome. In all reality, that’s truly what life’s journey and spiritual enlightenment are ultimately all about – it’s the endless pursuit of goals and self-actualization in hopes of achieving one’s highest potential so as to gain access to the ever-elusive experience of spiritual awakening (Maslow, 1943). The rest of the time is merely paddling through the choppy water until you reach the eye of the storm so that you can breathe for a moment before starting the process over once again.
Image by Jaimal Yogis [http://www.jaimalyogis.com/]
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Seeing as though today is the final day of Patient Safety Awareness Week, I thought this would be the perfect time to present my review of a highly acclaimed book on patient safety and healthcare. Anyone who knows me will tell you that I am a pretty avid reader. I will read just about anything and everything, just as long as it appeals to my emotions and/or experiences at any given time. Given that my life currently consists of ongoing medical appointments and other healthcare management tasks, most of the supplemental reading I’ve been doing over the last few years (outside of assigned reading for school and keeping up with pertinent medical journals) has primarily consisted of self-help books relating to chronic illness, psychology, and navigating the medical system. So, when I was given the opportunity to review Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors by Gretchen LeFever Watson, I was extremely elated. Although I had originally planned to take advantage of this opportunity during winter break from school since I knew that I would be recovering from a total hysterectomy and would be looking for things to do while stuck in bed, I am honestly kicking myself for not clearing some time in my schedule prior to surgery because I could have really used this information before my own patient safety was put at risk.
For those of you who are unaware, I was scheduled to have a total hysterectomy on December 8, 2017, using the da Vinci Robotic method in order to rectify the excessive and erratic bleeding that started as a result of complications from late-onset endometrial ablation failure following my NovaSure procedure in 2015. Unfortunately, what was supposed to be a “minimally invasive” procedure with “minimal scarring” and a “quick recovery period” turned into this mess…
Photo by Undiagnosed Warrior (2017). Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System [Image].
… but I will go into more details of this tragic event at a later time. Needless to say, it would have been far more helpful to have read this book before I actually needed the helpful tips supplied in the pages of Your Patient Safety Survival Guide.
The first thing I want to mention before reviewing the content of this novel is that I found myself drawn to this book simply because the author’s personal and professional background intrigued me. From a professional standpoint, Dr. Gretchen LeFever Watson holds a Ph.D. in Clinical Psychology and has held a variety of training and leadership positions in hospitals and community-based healthcare programs. Not only has she received numerous awards and grants for her research, but her work has also generated a great deal of media attention and recognition from other subject matter experts in the fields of psychology and healthcare as well (Watson, 2017). This is in addition to publishing two other patient safety books along with Your Patient Safety Guide and several peer-reviewed research papers. Considering that the author is clearly well-versed and has a long-standing history of working within both the past and current structure of the American medical system, I knew she would offer a great deal of insight from the professional side of health care. The fact that Dr. Watson has also been an advocate for patient safety and wellness from personal experiences as both a caregiver for her mother and as a parent when a medical error almost took her daughter’s life at the young age of only four-years-old made me think that her opinions would likely represent a more balanced perspective overall (Watson, 2017). As someone with multiple chronic and rare conditions, and a student studying for a degree in clinical psychology that has also spent many years working in veterinary medicine prior to disability myself, I was definitely interested in reading her perspective on some of the issues currently plaguing the safety and care of patients. Thankfully, this book did not disappoint.
Aside from the fact that each chapter of Your Patient Safety Survival Guide covered a wide breadth of obstacles in receiving adequate medical care (e.g., safety habits and best practices, avoidance of medication errors and overprescription of dangerous medications, and the prevention of infections and common medical injuries that can occur as a result of human error, negligence, malpractice, and purely bad luck), the thing that I liked most about this book is that every topic discussed in the text provides readers with an eclectic explanation illustrated through research statistics and patient examples. Chapter 1, for instance, notes some shocking statistics that suggest “at least 440,000 patients die needless deaths in US hospitals each year” and the “initial estimate of the financial impact of the patient safety crisis indicated it totaled around $5 billion annually, about one-quarter of which involves out-of-pocket expenses” (Watson, 2017, p. 7-8). While these numbers are obviously alarming, the author prevents hysteria or anxiety over such occurrences by putting the situation into a more realistic perspective by detailing the potentials causes of medical error and offering ways to combat it as either a patient receiving care or professional providing care. In this way, the author is avoiding labeling the problem according to a single source but rather a complex, systematic problem that can result in an infinite number of breakdowns within the medical system itself. Personally, I find this account refreshing because it first acknowledges the problem, without placing blame on either the patient or medical professionals specifically, and then it explains the how and why medical errors happen. It also makes it easier for the reader to accept the information before the author moves on to discuss her own recommendations and potential solutions for resolving the problem at hand. Nevertheless, one factor that distinguishes this book from many other patients and/or chronic illness texts is that Dr. Watson wrote the content of this book to equally address a combined audience of both patients (or their family members) and medical professionals alike.
Another important element of Your Patient Safety Survival Guide that I found relatively helpful is that each chapter presents the reader with either a tool that can help them measure and target goals relating to different variables of patient safety or an action plan that can minimize the potential for common medical mistakes. Although most of the tools and guidelines presented in this book are based on logic and common sense, I can personally attest to how easy it is to forget even the simplest of things, especially when you’re anxious about an upcoming surgery or procedure, concerned as to whether the physician will take your medical complaints seriously or not, or you’re just simply distracted by pain or other symptoms. In these cases, simpler is almost always going to be better in the long run anyways, although some of the planning tools and safety tips were also new to me as well. Still, the biggest takeaway that I got from reading this book came from the seventh and final chapter entitled Acceptance, Apology, and Forgiveness: Safeguard the Lives of Patients and Healthcare Providers. One of the reasons that this specific chapter stood out to me the most is that the end of this book overly emphasizes the fact the doctors and other healthcare providers are only human and, therefore, they’re liable to make mistakes just like anyone else. As Watson (2017) points out, “we all make errors. Our errors rarely result from the willful disregard for others. Factors beyond the control of providers often influence the emergence of error, and, when errors occur, providers are often in need of compassion – just like event’s primary victims” (p. 140-141).
With my own significant complications resulting from a major medical error fresh on my mind, the stories and information shared within these final pages clearly hit too close for comfort on a number of occasions. In many ways, it would have been easier to blame the surgeon and his support staff who performed my hysterectomy for everything. Lord knows that I had plenty of good reasons to rightly justify my anger and hatred over the situation, but what good would that have done in the end? Being angry about it wouldn’t make me feel better or allow me to heal any faster; yelling at the doctors and the hospital staff also wouldn’t prevent similar mistakes from happening to other patients in the future. Though it’s far more comfortable to blame the doctor when things don’t go as planned, it’s equally as hard to accept that it’s rare for patients to consider the harm we inflict on medical providers by establishing unrealistic expectations regarding our health care wants or needs. This is another reason why I really enjoyed reading this chapter because I liked that Watson (2017) discusses both the physiological and psychological impact that medical errors have on both the patient and their families, as well as the significant damage and stress that these faults can have on healthcare providers and facilities. Once again, it’s easy to forget that doctors and their support staff already feel the train and the pressure simply from completing the tasks they were trained to do in the first place. On the other hand, there will always be those few providers who tend to forget that patients are also human and just as fallible as they are themselves. Watson (2017) describes the apparent divide amongst patients and professionals best by suggesting that the biggest flaw in the wake of a major medical error or mistake occurs when the lines of communications are closed off, such as when full disclosure about the nature of the error is avoided in order to favor one’s pride instead.
In the end, there really isn’t too much more one could ask for in a single book regarding patient safety and healthcare, but if I had to choose one thing to criticize about any part of this book it would have to do with the fact that some of the chapters offer a rather viewpoint on the use and/or abuse of stimulants and opioids for managing chronic symptoms or pain. However, this is just my personal perspective based on taking these (or similar) drugs in order to manage my own symptoms either in the past or present, in addition to considering alternative opinions from other chronic illness patients who have also dealt with the medical system for an expansive period of time as well. Even if I don’t necessarily agree with all of the author’s personal and professional opinions as deliberated throughout Your Patient Safety Survival Guide, I still respect and appreciate the author’s judgments on these topics as she does support her logic using mainstream facts and theories regarding these types of medications. I am also very much appreciative of Dr. Watson’s willingness to devise solutions to the problems in healthcare and patient safety rather than focusing on the inadequacies of the system alone. I really do believe that this book – and Dr. Watson’s research and safety initiatives for patient care – will prove beneficial for anyone engaging in any part of the medical system to some degree. More importantly, I would highly recommend this book to anyone managing a chronic or rare disease since we are among the most vulnerable population of victims exposed to potential medical mishaps as we are routinely asked to put our faith, trust, and livelihood in the hands of practitioners of medicine.
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