I found this book to be all that the book jacket promises. Since I cannot improve on that description, the following is directly from the cover of this book.
“The Neonatal Intensive Care Unit (NICU) is a place where humanity, ethics, and science collide in dramatic and deeply personal ways, as parents, physicians, and nurses grapple with sometimes unanswerable questions. When does life begin? When and how should life end? And what does it mean to be human?
The NICU is a place made of stories – the stories of parents and babies who spend days, weeks, and even months waiting to go home, and of the dedicated clinicians who care for these tiny, developing humans. Early explores the fascinating evolution of neonatology and its significant breakthroughs – modern medicine can now save infants at five and a half months gestation who weigh less than a pound, when only fifty years ago there were a few effective treatments for premature babies. Each year, nearly four hundred thousand babies are born prematurely in the United States. When the scope is widened to include the entire world, that number climbs to fifteen million.
For the first time, journalist Sarah DiGregorio tells the rich and complex story of one of the most boundary-pushing medical disciplines – and the many people it has touched. Weaving her own story and those of other parents and NICU clinicians with in-depth reporting, DiGregorio examines the history and future of neonatology: how the first American NICU was set up as a sideshow on the Coney Island boardwalk; how modern advancements have allowed viability to be pushed to a mere twenty-two weeks; the political, cultural, and ethical issues that continue to arise in the face of dramatic scientific developments; and the clinicians at the front lines who are moving to new frontiers. Eye-opening and vital, Early uses premature birth as a window into our own humanity.”
Vision is complex and each person’s combinations of problems and circumstances is unique. Vision doesn’t function in isolation. It is represented in more areas of the brain than any other sense. It is involved in almost everything we do. How we see the world is an integral part of who we are. It follows that enhancing essential visual functions;
-eye alignment and movement,
-object perception, spatial perception, and guidance of movement
is messy and complex and that it is naïve to think that therapy is not influenced by the patient’s mindset, age, conflicts, and prior experiences.
All of this must be taken into consideration to treat patients. Computerized programs cannot do this but they can be useful to stimulate attention and motivation. It also requires more than a list of techniques. Doctors and therapists need to be ready and able to modify plans to match the patient’s current visual abilities. Optometric vision therapy is provided by doctors and therapists with specialty qualifications. Certified doctors are Fellows in the College of Optometrists in Vision Development (FCOVD). Certified therapists earn the title, Certified Optometric Vision Therapists (COVT). The College of Optometrists in Vision Development is the certifying body for this specialty.
Relationships between providers, patients, and their families are integral to the success of all healthcare, especially incremental care. Atul Gawande wrote about one of thirteen centers for treating patients with cystic fibrosis in the US in his book Better. One center had much better outcomes than all of the others even though the centers all followed the same protocol. The difference was that the director in one center got to know his patients personally. The better understanding and communication that resulted from these personal relationships fostered improved compliance. Atul Gawande also addresses this in his article on The Heroism of Incremental Care.
Therapy is an interplay between treatment and assessment as the patient progresses. The doctor and therapist continue to learn about patients from the way each patient responds. Dwight D. Eisenhower stated in reference to war that “Plans are useless, but planning is indispensable.” This also applies to other complex, messy situations.
Vision therapy is not easy and can be frustrating. Plasticity in Sensory Systems makes therapy possible. While neuroplasticity declines with age, it continues throughout life. Motivation can recruit surprising amounts of plasticity. The Power of Habit balances our ability to change. Habit enables us to function without consciously thinking through everything we do, which is not possible, but it can also cause us to err when conditions change. Therapy develops new visual habits. Focused rehearsal under a variety of circumstances facilitates supplanting existing habits with new skills and makes them more automatic than the dysfunctional patterns that they are replacing.
Optometric vision therapy takes advantage of neuroplasticity and the messiness in our visual system to make change possible. Therapy creates new visual patterns to be more efficient, more comfortable, and less taxing. Patients must achieve this for themselves, but appropriate feedback at the right time can be powerful, which is why doctors and therapists are indispensable in this process. Daniel Coyne provides example which demonstrate this in The Talent Code as does Norman Doidge in The Brain that Changes Itself. Humans are endowed with amazing abilities to learn and to adapt.
Work, school, organized sports, parenting, care of other family members, and taking care of necessities consumes most of our time and usually comes with some degree of stress. Recommendations for healthy lifestyles include a healthy diet, drinking lots of water, and exercise. Other means of building or restoring our resilience are often overlooked. These include play, hobbies, volunteering, rest, and sleep.
But if rest and sleep were drugs, they would be considered miracle drugs and they don’t have dangerous side-effects. If we think that the cost of sleep is too much because we have too much to do, we’re probably wrong. The evidence is overwhelming that we get more done when we get adequate rest. We think better and are healthier. A lack of sleep causes weight gain.
Alex Tang provides copious scientific evidence and examples to support this message. Arianna Huffington, who wrote Transforming Your Life One Night at a Time, wrote the Forward which provides an overview of the book. My primary reservation about the book, other than too many examples, is that it does not address children who are often more sleep-deprived than their parents. Previous blogs have addressed anxiety, depression, and self-destructive thoughts, all of which are on the rise for children and young adults. There are many causes for these problems but lack of sleep, which erodes executive function, is one of those reasons.
Take rest seriously: Too often we treat rest as merely the absence of work, or something that gets in the way of reaching our goals. In reality, hard work and deliberate rest are partners; each sustains and supports the other.
Focus: One way to create space for rest is to structure our daily schedules around unbroken periods of focused work. You can be a lot more productive in a couple of hours than in a day full of distractions and notifications. And chances are, your day is full of distractions: the average knowledge worker loses two to four hours each day to distractions, unnecessary meetings, and technology-driven interruptions. And as the science shows, multitasking is a myth and doesn’t work. (If your day involves extensive use of electronic displays, short breaks to get up and move and let your eyes refocus will also enhance your performance.)
Layer work and rest: By resting immediately after a period of focused work, you can give your subconscious time to discover solutions to problems that are eluding your conscious effort. Walking creates an ideal break for many people.
Get an early start: Many people do their most important work in the early morning.
Detach from work: Taking the time to rest is important, but so is paying attention to the quality of your rest. The more detachment you have, the more restorative your downtime will be. Detachment is partly a matter of not doing things, but it is also about doing things that occupy your mind enough to keep work from intruding.
Detach from devices: Achieving the kind of detachment we need for productive rest can’t really be done without regularly disconnecting from our devices. As Sherry Turkle noted in her book Reclaiming Conversation, the mere presence of a smartphone or device, even when it is not being used, alters our inner world and our connections with others.
Take a week off every season: Scientists have found that the happiness and relaxation we feel on vacation peaks after about a week, while the psychological benefits of a vacation last up to two months, but if you can’t take a week off every three months, take the vacation that fits into your schedule.
Practice deep play: People who have long, productive lives practice “deep play”. They have hobbies or enjoy sports or activities that offer some of the same psychological rewards as their jobs but in a different setting, and without the frustrations of work.
Get plenty of exercise: The more movement you have in your life, the better your brain can perform. Exercise also makes us more resilient, better able to handle stress, and helps us live longer, healthier lives.
Get plenty of sleep: Perhaps the most destructive myth of our work-obsessed culture is that sleep deprivation is a sign of commitment to one’s job. Sleep doesn’t just provide physical rest; it’s actually a time of incredible mental activity, giving our brains time to consolidate memories and skills, and clear out toxins that are associated with dementia late in life.
Good visual hygiene can prevent or alleviate many visual problems.
It has been recognized for decades that prolonged visual stress can cause lasting
problems in comfort and function, similar to what happens with repetitive
stress injuries. Practicing good visual hygiene has become increasingly
important as visual demands have increased at school, work, and home. The power
and efficiency of computers and electronic devices enable us to work without
taking our eyes off the screen or getting out of our chair.
When children’s vision interferes with their function, they get antsy, their minds wander, and they usually quit what they are supposed to be doing. They rarely report symptoms. They assume that what they are experiencing is part of the challenge. When adults’ vision interferes, their attention will also tend to wander and they may feel sleepy. These symptoms may not be recognized as signs of a visual problem. These signs and symptoms may indicate visual problems which require professional attention. Better visual hygiene, summarized below, is an important adjunct to professional care and will ameliorate many signs and symptoms.
-Take visual breaks before you start to experience the
effects of visual fatigue. Since this can be difficult to implement when you
are engaged in a task, consider installing timed reminders. Breaks from your
computer work should not be to check your phone. Get up and stretch your mind,
body, and eyes for a few minutes.
-Maintain good posture while reading and writing.
-When children are reading material that has too many unknown words and must repeatedly stare to decode, their eyes tire quickly. As a result of c this effort, they may get closer which makes it visually more stressful. They should be reading material that is less stressful and less frustrating.
-Children draw letters for years before letter formation becomes automatic. If it is difficult to get their eyes to direct and monitor what their hand is doing, they often squeeze the pencil close to the point and then lean in to see around their hand with one eye. While this may seem commendable because they are trying hard, it is forming habits that are difficult to change and puts a great deal of stress on the visual system. Children should develop adequate eye-hand coordination prior to being asked to write neat, uniform letters on a line while trying to express thoughts.
-Wear task-appropriate glasses or contact lenses such as sunglasses, lenses designed for computer use, and protective eye wear.
-Have good lighting which minimizes glare and shadows.
-Cell phone use has exploded. People who wear glasses to read
should put them on when they look at their phones. The average person looks at
their phone over 150 times a day. Eyestrain from phone use may go unnoticed
because the phones and their programs are designed to be enticing and addictive.
-Eye level is not straight ahead unless we sit perfectly
straight. Eye level averages 20o downward. Computer screens should
be placed in this position. In addition to the ergonomic advantage, eyes are less
open in this position and less likely to become dry.
-When keyboarding from paper, it is best to use a copy-holder placed next to the screen so your eyes don’t have to move up-and-down and near-to-far while trying to read material lying flat on your desk.
-We tend to blink less when we concentrate which causes eyes
to get dry, burn, itch, and blur. This can happen while using a computer or
driving when the visibility is poor or the driving is hectic.
-The importance of sleep tends to be overlooked in recommendations for healthy lifestyles, but it is as important as diet, exercise, and hydration. The first systems to be impaired due to lack of adequate rest are vision and cognition. Most people sleep better if they discontinue the use of electronics an hour before bedtime. For many people, just having their phone in the bedroom impairs their quality of sleep. Other devices can be used as alarm clocks.
When people are having significant visual problems, it can be difficult to convince them these simple, but challenging to implement, changes can be powerful, especially in combination. Even when other treatments are prescribed, good visual hygiene is still necessary to be comfortable and efficient.
In the October 6, 2018, Wall Street Journal, Suzanne O’Sullivan previews her new book, Brainstorm: Detective Stories from the World of Neurology. She explains how technology can deceive us with its wonderful images into thinking that it can provide all the answers. It does not. Technology cannot replace “the old-fashioned, personal process of gathering information from the patient”. “The interpretation of test results depends entirely on what we learn from the details of their stories, comparison to other patients, and our own intuitions.” Vision takes place in the same brain-body continuum. Aspects of evaluating vision and trying to normalize visual function has many parallels in neurology. Our brains cause sensations in our bodies as our bodies cause sensations in our brains. Narrative medicine is not only what patients say. Part of their story is revealed by how they tell it and part is told by what they do and how they do it. Observation is part of listening.
Suzanne O’Sullivan’s previous book, It’s All in Your Head told stories about psychosomatic diseases. Due to her focus on the person, not the disease, her stories are reminiscent of those told by Oliver Sacks. As she states in the concluding sentence of the article, “Listening to patients who have overcome the most perplexing of disabilities has a lot to teach us – and not just doctors – about our own humanity and the power of resilience.”
Vanessa Potter experienced a brain injury from a sudden inflammatory response triggered by a rare autoimmune disease. Within two days she went completely blind and lost much of her feeling and motor skills. She regained her sensation and motor abilities and partially regained her sight during an extended period of recovery. Because vision is represented in many areas of the brain which are normally coordinated, and because her brain was not processing naturally, Vanessa experienced many visual aberrations. We are not aware of our visual processes and cannot access them as we cannot consciously access most of our brain activity. Vanessa learns about the complexities of vision first hand as she loses her vision and as parts of it return to be reintegrated. Her story, and her telling of it, captures you like an engaging novel. I have chosen a few excepts to give you a flavor of her experiences and her writing.
“How does anyone explain what he or she sees anyway? It’s completely one-sided. This seeing that I am experiencing is nothing like anyone else’s seeing. We are not even starting in the same place. My seeing is conscious, an effort and something I have to will myself to do, and it’s exhausting. For everyone else it is an automatic reflex – a given.”
“I just want to shut out the world for a while so my brain can rest; it’s a war zone in here.”
“I need constant rest. Even a short conversation can leave me almost winded, devoid of any energy and with my body silently shaking in disapproval.”
As Vanessa must rely on her other senses due to her loss of vision, she becomes even more sensitive to the attitudes of her health professionals as they are no longer masked by their appearance. Her reaction to the platitude “It’s a waiting game” is: “If they only knew how long waiting takes, and how much energy it uses up.”
“How do you explain to someone that you have lost the very thing that they don’t even know that they have?”
“It is a difficult balance of doing enough to be occupied, but remembering I am still ill and need rest. The moment I do too much or go too long without a break, my whole body starts to jitter.”
“We try to do normal things, but it’s forced and feels false somehow. I don’t know when the transition occurs, when normality creeps back into a damaged life – yet it does.”
It’s always good to see nice endorsements of vision therapy from health care providers outside of our profession who “get it”. This one comes from Yael Tusk of the Jerusalem Center for Natural Health, a source for holistic health counseling and treatment in Israel.
Regarding solutions for ADHD Yael writes: “Vision problems that cause ADHD symptoms are rarely diagnosed by a regular optometrist and are therefore often overlooked. Anyone with reading problems, learning problems, or ADHD symptoms may have an undiagnosed vision problem … Many people have reported great improvement in their learning, reading, and concentration after receiving vision therapy.”