In honor of Christmas and Hanukkah and other solstice-centered holidays, and the warmth and compassion they make us want to extend to each other in the dark of the year, let me tell you a story about someone extraordinary.
Carol Decker is a wife and mom of two toddlers who lives in a small town at the foot of Mount Rainier in Washington. She is extraordinary not for professional achievements, but for very personal ones. Against overwhelming odds, she survived one of the most common, least-recognized illnesses in the United States: sepsis, which attacks an estimated 750,000 Americans each year, more than breast and lung cancer combined, and kills approximately one person every three minutes. What makes her extraordinary, though, is not only that she survived — because she had a lot of help doing that, including a smart and sympathetic medical team, thorough rehabilitative care, a supportive community and a loving and determined spouse — but that she found the courage and grace to embrace the changed life that sepsis left her with.
I met Carol because Self magazine asked me to write about her. From my story, which is now live on the web, and in print in the January issue, on sale this week:
When Carol Decker sits down to talk, she looks right at you. She cocks her head and smiles. She gestures and laughs easily, ducking her head so her brown-gold hair slides across her face.
She is so intent on what you say, and so thoughtful in response, that it takes a moment to realize that her hazel eyes are flickering back and forth as though they cannot find a focus. It takes another minute to see that the right hand she waves is missing a ring finger and that her left arm ends below her elbow. When she jumps up to answer the doorbell, her walk has a side-to-side sway. “My new feet are bouncy,” she says with a laugh. Those feet are steel and plastic, jointed at the ankle and attached to sleek carbon-fiber braces that clamp to both legs at her knees. She lost her feet — and her hand, her finger, a good portion of her skin and her sight — to an overwhelming reaction to an infection while she was pregnant with her younger daughter.
Her daughter, Safiya, survived. Against the odds, Carol did, too. But three years later, the most remarkable thing about her may not be her ordeal or her survival. It is the matter-of-fact grace with which she and her husband, Scott, have built a new life — one that accepts what happened to her and moves on. “I wake up in the morning, and I can’t wait to wake my kids up,” she says. “Or be with my husband. Every day is a good day, because I am here.”
Carol lost her extremities and her sight because of the biological onslaught of sepsis, which strictly speaking is not an infection but the body’s over-revved reaction to one. The heart races, blood pressure plummets, blood in the small vessels clots unpredictably and chokes off oxygen to the tissues — and when emergency drugs are administered to bring the patient back from the brink of death, they can do as much damage as sepsis itself was about to.
Despite its remarkable incidence — it may be responsible for one our of every four deaths in U.S. hospitals — sepsis is practically unknown to the public; a recent survey found that six out of 10 Americans have never heard the term. Scott Decker, who is a dentist, certainly had not. When Carol was stricken, he had to pull himself away from her side to read up in the hospital’s library while she was sleeping. And medical care is not equally expert in handling it: The nonprofit Institute for Healthcare Improvement has been pushing hospitals to practice a sepsis management “bundle” or checklist of particular actions that can improve patients’ survival if performed within six hours and 24 hours of when the syndrome is first recognized.
Only a few nonprofits are working to publicize sepsis; despite being common and devastating, it is nowhere near as well-known as breast or prostate cancer, or hepatitis or HIV. In the United States, there is the Sepsis Alliance; in the United Kingdom, the Sepsis Trust; and internationally, the Global Sepsis Alliance and the Surviving Sepsis Campaign.
There is no risk group for sepsis, though some people are more vulnerable than others; it can spiral without warning out of a minor infection. That means that anyone, practically speaking, may be at risk. So it is worth reading up on it a bit, just in case. And it is worth knowing about survivors like Carol Decker, for a glimpse of what life — changed irrevocably, but still possessing dignity and joy — can be like on the other side.
Image: Scott and Carol Decker, with their daughters in the background. Courtesy SELF Magazine.