Everyone knows lightning is not supposed to strike in the same place twice, let alone four times. Yet it did for Jessie Gruman, 53, the founder and president of the Center for the Advancement of Health, in Washington. She knows all too well what it's like to be on the receiving end of bad health news: first at age 20 with a diagnosis of Hodgkin's disease, 10 years later with cervical cancer, then five years ago with viral pericarditis (a potentially fatal infection of the heart's lining) and just three years ago with colon cancer.
With each diagnosis, knowing her life hung in the balance, she was "stunned, then anguished" and astonished by "how much energy it takes to get from the bad news to actually starting on the return path to health."
But following all four bouts with life-threatening illness, return to health she did, and the lessons she learned prompted her to write AfterShock: What to Do When the Doctor Gives You - or Someone You Love - a Devastating Diagnosis, published this year by Walker & Co.
I consider this book so valuable I plan to keep it on my bedside table should I need it later on. Its recommendations are based not just on the author's experiences with illness, but also on interviews with more than 250 others: patients, family members, nurses, doctors, health plan administrators, managers of busy practices and nonprofit leaders.
When confronted with a life-threatening diagnosis, most people feel a need to do something fast. But Gruman, who has a doctorate in social psychology, warns patients to "slow down" - take time to confirm the diagnosis, seek a second opinion, consider the various treatment options and their potential side effects and long-term consequences. Doing a little homework before rushing into treatment can help you get the treatment that will work best for you.
Rather than mull over what you might have done to cause the condition, Gruman points out that the past is past and that the problem now is how to handle the future. Nor should you worry about being less than optimistic. It's normal to be depressed when you get terrible news about your future. As Gruman writes, "Expressing fear, sadness, anger or guilt will not make your disease worse."
Her common-sense suggestions for getting through those first two days include the following:
- Recognize that this is a crisis and treat it as one. Don't act as if nothing is happening. If you want to be with family or friends, tell them. If you don't, tell them you need to be alone. And because memory is often slippery during a crisis, write down things you need to remember.
- Protect yourself. Talk if you want to, cry if you need to. You don't have to explain to anyone what you decide to do. And if you find the information online confusing or frightening, stop searching.
- Don't rush to form a treatment plan. Your main job now is to make the next doctor appointment and write down questions for your doctor, employer and insurance company.
- Eat and rest. Emotional stress is exhausting. Try to nap, or if you're too agitated, go for a walk. Take some deep breaths and pursue your usual exercise if you feel like it. If sleep is elusive, ask your doctor for a temporary sleep aid.
Next, learn as much as you can about your condition and its potential treatments so that you can make an informed choice. How does the disease affect the body? What may cause it to get worse? How does it usually progress? What treatments are available, and how does each affect the disease? What complications and side effects are likely with each treatment?
But Gruman cautions against doing an exhaustive search for information to avoid taking the next step, since "you are always going to have less than the optimal amount of information to make a decision."
When a good friend or family member is in trouble, people want - and usually offer - to help. And their help, both physical and emotional, can be very valuable, so take advantage of it.
Some people are also too ready to give advice and to tell about others they know who faced a similar predicament. If this is not what you want to hear, nip it in the bud without offending the person by saying, "Thank you, but each patient is unique, and I'm going by what my doctor tells me."
To get the help you really need, you will have to tell people what you are up against and give those who offer help something to do. Gruman suggests listing the necessary tasks that you may not be able to accomplish on your own, like grocery shopping; picking the children up at school, getting them to play dates or taking them for an outing or sleepover; and making meals. You should also include on your list the possible need for someone to accompany you to doctor appointments, transport you to a treatment center or simply take you out for a restorative lunch or walk in the park.
Try to match the tasks to individuals best able to achieve them. But don't be surprised if some say, "Is there anything I can do to help?" and then fail to follow through. You'll soon discover whom you can count on.
Taking someone with you to doctor appointments can be the most important thing you do. Under stress, memory is unreliable and even hearing can fail you. Gruman lists the characteristics of a person best suited to help at this time. Your partner should be free for at least two hours beyond when the appointment should end (delays are common); go over transportation and destination arrangements a day ahead of time; be willing to play whatever role you consider appropriate, like sitting quietly, taking notes or asking questions; and agree not to discuss the situation with others without your permission.
Of course, you should come to all doctor appointments with a list of all your questions and, if no one else is able to write down what the doctor says, you should tape-record the session so you can listen to it again at home and replay it for others if you choose to.
I cannot emphasize this point strongly enough. As Harry, a 78-year-old who accompanied his daughter to all her doctor appointments, put it to Gruman: "Even if there are three of us in the room, we each remember different things that were said - and sometimes the things we remember have different meanings to us" and need to be sorted out or clarified by the doctor.
As Gruman notes, it is difficult to absorb unfamiliar technical information that you may have to weigh as you make decisions. Distress about your diagnosis and what it means for your future can impair your ability to listen and understand. You may find it hard to question, disagree or advocate for your own best interests when you feel your life is in the doctor's hands. And you may tend to dwell on the best-case or worst-case scenario, but having a record of what the doctor really said can provide a more realistic view of what lies ahead.
Scott Saulters wasn’t sure if his film had just taken one of the two top prizes at a recent film competition. Although Saulters has been in Taiwan for 15 years and is proficient in Mandarin, the award ceremony for the inaugural “Bi Tian Iann” (眯電影) short film contest was conducted entirely in Hoklo (also known as Taiwanese), a language he can’t speak. “I thought I heard it, but I didn’t want to look too excited,” he says. Despite his limited command of the tongue, Saulter’s entry, Wu Yu Tzu (烏魚子, mullet roe), took first place in the amateur category of the
The Taiwan of yesteryear was dominated in whole or in part by the Dutch, Spanish, Qing Empire and Japanese. But is the Taiwanese name for a popular edible fish derived from the Portuguese language? Cheng Wei-chung (鄭維中), an associate research fellow at Academia Sinica’s Institute of Taiwan History, says yes. The fish in question is the narrow-barred Spanish mackerel, which was listed in early 18th century Qing local gazetteers as Taiwanese specialities alongside milk fish and mullet, according to Cheng’s paper, “Mullet, narrow-barred Spanish mackerel and milkfish: Multiple contextual developments of three certified seafood specilaities in Taiwan, from the
I didn’t expect to spend more than three minutes out of my car, yet the sun was so brutal I put on my hat before approaching the seawall. Beimen (北門) is the flattest and most sun-baked part of Tainan. It lacks trees and people. In wintertime, the weather is often delightful. It wasn’t yet mid-morning in the hot season, however, and I felt like a leaf shriveling in the desert. Atop the seawall but facing inland, I could see dozens of the rectangular ponds which account for a significant percentage of Beimen’s “land” area. Some, no doubt, were dug to produce
Aug. 10 to Aug. 16 They called him the “No Problem Doctor” (沒關係醫生) because that’s what he always told his patients when they couldn’t pay up. Operating the only clinic in Changhua County’s Pusin Township (埔心) during the 1950s, Hsu Tsai-chih (許再枝) knew that life was difficult in his remote hometown. “They barely had enough to survive, so it was pointless to chase after them for the money,” an 81-year-old Hsu told the United Daily News in 2002. “I just went with the flow, some offered to pay me back years later but I had already forgotten