Republishing a story from my book, Showdown at Shinagawa: Tales of Filming from Bombay to Brazil
For many freelancers like me in the San Francisco Bay Area, our bread-and-butter work has been a steady diet of film and video projects for Silicon Valley.
Technology companies around the world spend millions of dollars on marketing media. Many of these projects rely on real people talking about their own experiencesâ€”that staple of corporate video, the talking head.
It’s important to keep asking: what are we selling? I sometimes find it difficult to feel an emotional attachment. Enterprise systems integration or managed hybrid cloud-based solutions don’t always tear at the heartstrings.
But as my kids have grown up, both parents have passed away, and I’ve started to age myself, I’ve come to realize that health is the most important product of technology, and that patient stories make the most interesting and compelling talking heads — not corporate executives, engineers, or software designers.
Here are four memorable patients (names changed for privacy) from my health-care shoots in the past couple of years.
Ethel stays down on the farm
It’s barely ten degrees as we skid up the icy driveway, greeted by a dozen shepherds, one monster gonzo guard dog, a flock of 20 sheep used for herding practice, and a gaggle of ducks for comic relief and sound effects.
Ethel is 91-1/2 years old and lives with her daughter Flo, who raises sheep-herding dogs on her farm outside a small town in Colorado.
“Mom really appreciates being out here with me,” Flo tells our small crew. “She really enjoys being out in the country and watching the animals and babies when they’re born in the spring so I’m gonna do everything I can to help her stay here.”
“I don’t want to live in assisted living,” says Ethel with a twinkle in her eye. “I have my daughter, and I feel that she needs me as much as I need her.
“Here at home, I can do what I want to do, when I want to, and if I want to.”
Relatively spry for her age, she has a history of falls, requires access to oxygen, and needs daily monitoring for a variety of conditions. Each morning, she uses a simple monitoring system, a small interface box through her phone line, to input her weight, oxygen level, and blood pressure. She answers a series of questions such as how she feels, how she slept, and whether her breathing is obstructed. A nurse at the other end, 200 miles away, keeps track of Ethel’s daily entries and calls her or sends in a local visiting nurse if she notices anything out of the ordinary. Ethel also wears a call button to signal for help if she falls.
A few months after our interview, I am sad to hear that Ethel has passed away. But I have no doubt her quality of life over the last few years was greatly enhanced by being able to stay at home, with the assistance of her daughter and our client company’s easy, sophisticated monitoring technology.
Toshi and his wonderful world
“I felt dizzy and sleepy during the day, and I just couldn’t keep up,” recalls Toshi-san in a Tokyo apartment, when we ask what drove him to seek treatment.
“On the way home from work one night, I fell asleep in a taxi. Then the driver woke me up and said I was not breathing.” He realized at the time that he needed doctoring, participated in a medical sleep study, and was diagnosed with sleep apnea.
Toshi’s doctor prescribes daily use of a CPAP machine (Continuous Positive Airway Pressure, made by our client), a small pump that pushes air through a flexible tube and mask into the patient’s airstream. This keeps open the airway in the throat which can otherwise flap closed during sleep, causing cessation of breathing and often loud snoring.
Sleep apnea patients’ blood oxygen levels can drop precipitously at night, a dangerous condition. CPAP treatment can help lower blood pressure and decrease risk of strokes, diabetes, and heart disease.
Using the CPAP every night has helped Toshi-san immensely. For the first time in years, he is sleeping well on a regular basis, and his sleepiness, dizziness, and disorientation during the day have vanished.
He takes us out one night to a favorite club.
“After work I have so much energy now. I enjoy karaoke with my friends. They all love my Louis Armstrong.”
He scoops up the mic and croons a few verses of “It’s a Wonderful World.”
“I see trees of green, red roses too. I see them bloom for me and for you.”
Bud, an Englishman with a future
Bud is 28, lives in Manchester, England, England, has completed university, and holds a demanding job as an actuary. He jogs in the streets, works out at a local gym, and has just bought a downtown flat with his fiancée, Robin. Remarkably, Bud has cystic fibrosis.
“He has led quite a normal life,” says his doctor, “counterpointed by cystic fibrosis, for which currently there is no cure.”
A chronic, life-threatening, genetic disease of the lungs and digestive system, CF has long been considered a condition found among children. Seventy years ago, a newborn with CF would likely not live beyond his first year. But advances in medical research and treatment have extended the average life expectancy of babies born with the disease today to 37 years. Planning a future is now much more feasible.
Bud is out to beat the average. Like any couple in love, he and Robin look forward to sharing their lives together.
“The most important and exciting thing in my life right now is Robin, and our flat,” Bud tells us with a big smile. “That Robin was willing to make this commitment, knowing everything she knows about me, was huge.”
“It’s really great to own our own place,” she agrees. “It’s quite a big step. It’s brilliant!”
One of the reasons all this is possible: Bud uses a portable nebulizer made by our client company, which makes daily delivery of his inhaled medication easier than ever.
Most CF patients are on antibiotics of some kind, and many therapies involve inhalation of medication to keep the airways open. When Bud was younger, his nebulizers were heavy and archaic, made a loud racket, and required electricity. His new nebulizer is a bit larger than a deck of cards, portable, battery-powered, and silent. For someone who needs to breathe in medication for an hour or two a day, this is a miracle.
“I’ve seen a lot of positive changes in my lifetime with respect to cystic fibrosis,” Bud says happily. We follow him and Robin to a pub one evening, where they meet up with friends.
“He tries to stay positive all the time,” Robin says of her man. “He’s just great fun to be around, and I can’t really imagine my life without him in it.”
Ishmael, who isn’t afraid of life
“When I’m asleep,” Ishmael tells us, “I dream that I am playing soccer on a soccer team and I score a lot of goals.”
But Ishmael is 15 and has an incapacitating neuromuscular disease that is causing him to lose control of his body. His father, a Mexico City cabdriver, has to carry him up and down two flights of stairs to their apartment. His mother spends hours each day massaging and stretching Ishmael’s limbs to keep them flexible.
Several times a week, his loving parents schlep him across the sprawling city for treatments at Teleton, a local charitable foundation that maintains a dozen clinics across Mexico for 24,000 needy children with chronic diseases and disabilities. At the clinic, Ishmael uses a cough assist device made by our client to help him clear his lungs of phlegm buildup, an interactive virtual skiing game where he can schuss and slalom down a mountain by swaying his upper body back and forth in his wheelchair, and a walking machine to keep his legs limber.
His disease has no cure. The treatments attempt to stay ahead of this degenerative killer, and the pace of Ishmaelâ€™s decline has slowed markedly since he began coming to the clinic. He was still ambulatory when his family first sought help at Teleton, but tragically, he lost the ability to walk during his three-year stint on the waiting list.
This is one of the dreadful anomalies of modern medicine. “Look, we can often perform miracles,” a physician once told us on camera, “but they’re all fabulously expensive. No one can afford these treatments unless they’re rich or have the right insurance. But everyone should have access to quality medical care.”
You might expect Ishmael and his family to be bitter about his situation. “But despite all this,” says his doctor as she tears up on camera, “he is a young boy who is seeking the deepest meaning in life.”
“He dreams of being able to walk,” says Ishmael’s mom, also close to tears. “But he always says, ‘Mom, since I know that may not be possible, my biggest dream is to be a person who isn’t afraid of life.'”
At the end of our interview, we ask Ishmael if there is anything he wants to add.
“Thank you for giving me this opportunity to show what my life is like,” he says as we all grow misty-eyed. “Thanks for making this film so that people in other countries can see me, which is something that I never imagined.
“I would not change my life.”
A personal connection
Meeting these patients was a moving and uplifting experience. I admired Bud’s forward-looking spirit and Ishmael’s philosophical perspective. But with Ethel and Toshi-san and their treatments, I felt a more personal connection.
At the time I met Ethel, my own elderly mother was still living alone in Arizona. Though Mom was in sparkling good health, my sister and other family close by, she was 96, and I couldn’t help comparing her situation to Ethel’s. Mom didn’t need daily monitoring, but like Ethel, Mom had had a few falls, a matter of great concern for all of us in the family. Like Ethel, she refused to consider assisted living. And like Ethel, she wore a call button when she was alone in the house.
With one difference: Ethel’s call button, made by our client, a medical technology company, had a motion sensor that could detect a patient’s fall and automatically call for help. I knew Mom had fallen a couple of times and forgotten to press the button in her shock, so I passed on the news, and we soon replaced Mom’s call button with one like Ethel’s.
Like Toshi-san, I have severe sleep apnea, diagnosed several years ago. I probably had sleep apnea for years or decades without knowing, or at least without acknowledging my problem. Though never dizzy like Toshi, I was often tired during the day, usually able to drop off to sleep easily during car rides (to the amusement of my travel companions). My wife had told me for years that I snored badly and often stopped breathing at night, but I remained in deep denial until my sleep patterns had gotten so bad I had to do something.
The CPAP changed my life. I still wake up during the night, but not every hour, as I did before finally seeking treatment. I am much less sleepy and have much more energy during the day. The machine is small and portable and travels easily, and Iâ€™ve taken it along on shoots and pleasure trips on four continents in the past few years.
Our most important product
When I was a kid, General Electric’s TV spokesman Ronald Reagan often uttered their slogan, “Progress is our most important product.”
Since then, I’ve shot lots of progress — hundreds of projects for tech companies: forward-thinking vision videos with actors in complicated dramatic or comic narratives; “big iron” films that show off the latest computer, tablet, monitor, phone, or server hardware; customer success stories featuring happy clients of our clients; software films that sell scalable content managers, business services, robust diagnostic tools, and user interfaces.
But promoting health is more important than the latest consumer gadgetry or enterprise productivity. The most rewarding projects in my history show ordinary people —mtrying to get healthy, stay healthy, remain in their homes, extend their lives, or improve their quality of life. Improving health care is the ultimate progress, and that truly is our most important product.