The morning of the trip, the wind blew like crazy and the forecast called for rain mixed with snow. So what? Lisa Speckman couldn't wait for the adventure to begin. She had packed what she needed: her medicines, a parka, a single glove, a pair of fleece pants to cover her stumps.
Now she is sitting in her wheelchair, waiting for her friends to load the Jeep. This will be her first outing since getting sick a year ago, the first time back in the mountains, just like old times. They will snowmobile up to Lily Lake and spend the night.
The timing of the trip and the name of the lake are just coincidences, but they're hard to ignore: March 1, the anniversary of the day she nearly died; Lily, the name of her youngest daughter. A year ago, Lisa went to the hospital to have a baby. Within weeks she had lost three limbs, multiple organs and her career.
She needs this trip, the chance to journey to a setting that is so much a part of her own nature, to get weary in a good way, to listen to what she calls the deafening silence of winter. She needs to know what is possible. Yes, the weather is unpredictable, she decides. But then, so is everything else.
When you work in the emergency room you quickly learn how unexpected life can be, altered forever by a fever, a gun, a driver who changed lanes without looking. Still, the news traveling quickly from Intensive Care down to the ER at LDS Hospital blindsided her co-workers: "Lisa Speckman is dying."
Lisa was the kind of ER nurse who could handle anything, the one you could count on to take a shift no one else wanted, the one who could take the edge off a bad night with her quirky sense of humor. She was strong and healthy. She had delivered a healthy baby. She was going home today, wasn't she?
Her pregnancy had been effortless. In her eighth month, on January afternoons, Lisa took 2-year-old Hannah to Alta to ski, sheltering her daughter between her legs as they headed downhill. The day before her due date, Feb. 25, 2005, Lisa pulled a 12-hour shift in the emergency room at LDS Hospital.
Before dawn the next morning, right on schedule, her water broke. Lillian Marrakesh Speckman, bald, breech and 19 inches long, was delivered at sunrise by C-section. By late morning, her husband, Steve, a reporter at the Deseret Morning News, was back in the newsroom showing off photos of the new baby. In her room at LDS Hospital, Lisa was tired but happy. "She's perfect," she told an ER co-worker who came by to see Lily the next day. Lisa also showed off her own toenails, painted by Hannah a little messy but festive.
Life is full of tiny details that flit by mostly unnoticed, except perhaps in retrospect. Lisa's list would later include toenails and taste buds and the pale blue wool socks she bought for herself with some birthday cash.
Lisa was so sure she was leaving the hospital on March 1 that she asked a friend to dinner that night. Still, says her mother, when she talked to Lisa by phone, the conversation was off. At times, Lisa seemed to make no sense.
By the time Lisa should have been gathering up her flowers and wrapping Lily for the trip home, there was no question something was wrong. In pain and frightened, she had called Steve early in the morning to tell him she was having trouble breathing and her stomach was swollen and sore. Probably a kinked bowel, doctors reassured Steve as they wheeled her in for exploratory surgery early in the afternoon.
Friends waited with Steve as the hours dragged on. Finally, doctors brought news that turned his world on its head. "Your wife is as sick as a human being can be and still be alive," is how friend Susan Heiner remembers it. What doctors had assumed was a routine problem turned out to be a massive infection; they had removed her uterus, which was oozing pus.
Lisa's future was being measured in minutes: If she made it through this minute, she had a chance of surviving the next one. If she somehow made it one hour she might make it two but with every organ in her body struggling, no one believed she'd survive the night. Even the whites of her eyes were swollen. She lay unconscious, her eyelids stretched so tight they couldn't close. Her skin was mottled, purple and blue and gray, as if she'd been beaten.
Later that evening, Lisa's mother, Dee Borowiak, arrived from Chicago. Susan took her upstairs to Lisa's empty hospital room, still filled with congratulatory balloons and Lisa's slippers, where nurses handed her Lily. OK, there will be no nonsense here, Dee told her tiny granddaughter. "You're going to eat and grow and get fat and happy, so that when your mother gets out of the hospital she'll know this was all worth it." Then Dee went downstairs to see her daughter.
Lisa is the youngest of Dee and Bill's four children, the one who always tested every explanation; the little girl who wouldn't stay away from the creek in their back yard in Lockport, Ill., even when her parents told her she was too small to be out there catching frogs with the big kids.
Dee sat down in a chair next to Lisa's bed, patted her daughter's swollen blue hand and began: "Our baby is beautiful," she said. "I can't wait for you to see her." Susan Heiner, uncertain that Dee understood the prognosis, warned her not to get her hopes up. "This is serious," she told her. Of course, said Dee. "But they don't know Lisa. Lisa won't stand for this."
She was fighting a life-and-death battle against Streptococcus pyogenes Strep A a common one-cell organism that is mindless in its drive to survive. For that, it needs a human.
In winter months, about 1 in 20 adults and one-third of children carry Strep A in their noses, throats or on their skin at any time. It may hang around for a few days or even months, but most often it's benign. Since Strep A conjures the image of a sore throat, a mild skin infection, occasionally a more severe complication like rheumatic fever, it's easy to underestimate its destructive potential. There are about 150 different varieties, and it is singularly good at adapting to its circumstances.
In rare and horrifying cases about 3.5 in 100,000, according to noted infectious disease expert Dr. Dennis L. Stevens of the VA Medical System in Boise Group A Strep becomes vicious. Experts call it "invasive" when it works its toxic way into parts of the body usually out of its reach, like the blood, muscle or spinal fluid.
Invasive Strep A can directly cause necrotizing fasciitis, often simplistically called flesh-eating disease, although in reality it attacks connective tissue, destroying muscles and their underpinnings, not just flesh. One in five afflicted that way will die. It can also cause devastating syndromes, not by spreading bacteria but by releasing powerful poisons. The process can rage on after the bacteria itself has been killed penicillin usually does the trick.
About a third of those cases turn into Streptococcal toxic shock syndrome (not associated with tampons). As blood pressure plunges, crucial organs like kidneys and lungs start to shut down. As many as 70 percent of patients die. Invasive Strep A may also jump-start a process of blood coagulation; the widespread clotting chokes off blood flow to the fingers and toes, arms and legs, strangling limbs. If the limbs die, they must be removed to save the rest of the body.
Lisa's strep chose three destructive paths, says Dr. Jeffrey R. Saffle, professor of surgery at the University of Utah School of Medicine and director of University Hospital's burn intensive care unit. It settled in the muscle and connective tissue in her abdominal wall, creating large abscesses. It triggered toxic shock. And it choked off circulation to her limbs.
Lisa was unconscious as her organs died incrementally. The next day, doctors took out her ovaries and sections of her large and small intestines. On Day 5, surgeons removed her gall bladder and performed an ileostomy, which funneled her waste to a bag on her abdomen. Meanwhile, her liver couldn't keep up with the toxins that were forming in her body. And her limbs were darkening ominously.
"Each day," wrote Steve in an e-mail to his friends, "is a new emotion based on one or two central themes fear and sorrow, mostly for each day Hannah is without her mommy. I am trying to stay positive and trying to envision our family as four people in the future. I continue to pray. I continue to talk to Lisa, even when I'm not in the room with her. I wear her wedding ring around my neck on a chain she normally wears I won't take it off until I can put it back on her finger, or at least around her neck."
Lisa and Steve met at a party in Chicago in 1996. That first night they talked for five hours straight, about his Peace Corps stint in Micronesia and her medical missions to Peru, and the bumpy terrain of relationships. Already, they discovered, they could discuss anything without flinching. "Blunt" and "Blunter," their friends affectionately nicknamed them. They got married two days after Christmas in 1997, put their belongings in storage and immediately set off on a three-month whim-driven, low-budget honeymoon through the South Pacific. In 1998 they settled in Utah, lured by the promise of mountain trails.
Lisa was a hiker, a skier, a biker, a hugger, a nurse, a traveler, a woman who never sat still. If there was one moment that summed Lisa up, it was that time on a camping trip to Idaho when Steve was struggling to land a large fish and Lisa took off her clothes to jump in the river and toss it up on the bank. Then she ran in her underwear down the road looking for the sign that would tell them if they could keep the fish.
On Day 12, Lisa was transferred to the burn intensive care at University Hospital. More like chemotherapy than fire, the strep-induced toxins had burned her from the inside out. It seared more than half of her body, including her tongue, and her hair fell out in clumps.
Before it can destroy, invasive Strep A has to find a way in. Its doorway could be a wound, even one as innocuous as a bug bite. Half the time, it simply finds a vulnerable area a sprain or a bruise with no skin break. Boise microbiologist Amy Bryant tells of a child who bumped his knee while trick or treating. Within 48 hours, doctors had to amputate his leg because of strep.
Invasive Strep A is sneaky, its virulence due in part to antigens on its cell surface that are so similar to human heart, bone and muscle tissues that they serve as a disguise; the bacteria appear familiar and safe, catching the immune system off guard.
Some scientists theorize, too, that certain people have immunological markers that predispose them to bad outcomes. In addition, strep specialists think it's likely that the immune system itself may cause harm by overreacting. One infectious disease specialist says it's like turning on a sprinkler system in an art museum to counteract cigar smoke: a major, destructive offensive against a nonthreat.
The Utah Health Department started tracking invasive Group A Strep only a year ago too soon to figure out whether public health or private citizens can do anything to avoid it, says Susan Mottice, a state epidemiologist. They have not yet found predictability in what feels too much like brutal random chance. There were 70 reported cases of invasive Strep A last year; officials are certain that's an undercount. It's an unsettling fact, experts say, that the number of invasive cases is increasing.
It's unclear how Lisa's strep began, but impossible not to wonder. Had she tripped on something and discounted the ensuing bruise as nothing? Did she pick it up at work? Did it sneak in through the C-section site? Many local physicians familiar with her case declined to discuss it because of potential litigation. Hospital risk management teams counseled even those doctors not involved with Lisa's care not to discuss strep for this article.
In the burn unit, surgeons sliced out dead tissue on her mottled limbs, hoping to save as much leg as they could and at least part of her right hand. A day after that they removed her legs below the knees. When the tissue continued to die, they went in again, and then again, each time taking off more, until the legs ended just inches below her hips. Two days after they amputated her legs, they cut off her right arm, leaving a stump midway from elbow to shoulder.
The tally of limbs and organs strep claimed had effectively reduced one-third of her body, and Steve wondered how much more she could take. Unspoken was "Would she want this? How much can someone lose and still want to live?"
As the strep took its toll, LDS emergency room nurses Lorie Hutchison and Anne Marie Bickmore set up a "Lisa Speckman Update" on Bickmore's voicemail. Hutchison would call the hospital each morning, then try to figure out how to phrase the increasingly grim news. "How do you tell people, 'They're cutting off her legs?' " remembers Hutchison, who would write her message, practice it out loud, then rewrite the words to soften the brittle edges, trying to find the right balance of truth and hope.
At least twice a day, Steve made the trek across the tunnel leading to Primary Children's Medical Center, where Lily was being treated for respiratory syncytial virus (RSV). And the vigil continued in Lisa's room, where Steve would sprinkle her pillow with eucalyptus oil, hoping the fragrance would remind her of an afternoon in Australia when the air was hot and dry and everything was fine.
She slipped in and out of consciousness, full of medications that chemically paralyzed her and sedatives to keep her from panicking because she couldn't move. When she slept she had horrifying dreams. When she wasn't asleep, they gave her the news in small bits, deciding each day how much she could handle. Steve and Dee told the story in short chapters that had to be repeated over and over, the immensity too much to take in. Trying to make sense of it, Lisa groggily figured she must have been in a car crash, but she couldn't remember a thing about it.
She had been off the medications five days before she grasped most of what had happened. On Easter Sunday, near the end of March, her lips dry and a trach tube still in place, she told her mom, "I'm back."
There's an old parlor game where people compare potential losses. "Which would you rather lose?" the question goes, "your sight or your hearing? Your arms or your legs?"
Here's how Lisa answers the question. "I could live without an arm," she says now. "I could modify my career and adjust." But her legs were another story. "My legs were where I lived and where my heart was."
Stuck in bed in those first weeks of April, everything seemed too hard. How would she be a mother if she couldn't skip down the beach with her daughters, take them hiking, roughhouse on the floor?
But there were milestones that buoyed her. Her kidneys started working again, a few drops of urine that made everyone cheer and put an end to dialysis. Steve brought Hannah and Lily to see her for the first time, and Hannah asked only "Where'd Mommy's hair go?"
On a sunny day near the end of April, Steve and Dee wheeled Lisa through the front door of the hospital for a breath of fresh air. There were tulips and daffodils growing in the island in the middle of the driveway, and a wisp of breeze. Suddenly she was crying, happy to be outside and in motion, even on such a small journey.
There were months of in-patient rehab still to come, first at the University of Utah and then in Chicago. Steve gave her pep talks. Her one arm was a gift, he told her.
After all, her loss, like all losses, was relative. If the surgeon had cut a little higher on her right arm, she might not be able to use a prosthetic one. If she had lost a few more inches of her legs, she might not be able to sit up. She could have lost her tongue.
In Chicago, where Lisa went for intensive inpatient therapy at the Rehabilitation Institute in the summer of 2005, she met two women who had lost all four of their limbs. She also met a man who had lost both arms in an electrical accident. He had both legs and could walk, but he had a 2-year-old and a baby on the way and he was sick at the thought that he couldn't cuddle them. Lisa could stroke Lily's cheek and give Hannah a one-armed hug. She still had five fingers, even if they were hypersensitive and sometimes painful.
"My one arm beats them all to hell," she decided.
She also talked to a woman who had lost part of one leg to an infection similar to hers. The woman was bitter, even a year later, and Lisa decided she didn't want to be that woman.
Lisa had lost three limbs, but they hadn't amputated her sense of humor. Even back in the burn unit, not long after she finally grasped what had happened to her, she called her co-workers in the ER at LDS Hospital. "Hi, this is Lisa," she said. "Do you know anybody who needs some shoes?"
Just before Thanksgiving, she came home to Utah. Before she'd gotten sick, they lived in a cozy cottage near East High. But when it became clear that the house, with its stairs and small nooks, wouldn't work for a wheelchair, Steve had tried to think of a way to hold onto their home the one constant in their lives. One afternoon in early June he showed up at a Utah audition for the TV reality show "Extreme Makeover: Home Edition." He mailed in an application and never heard back. Lisa's story apparently wasn't TV-worthy.
So that fall, as he was trying to figure out how to pay the premium on Lisa's health insurance she had been unemployed for six months now and the benefit was running out Steve scrambled to sell the house and find an acceptable replacement. He moved the girls to Bountiful, into a house that had been retrofitted years ago with wider doorways and an elevator.
Returning home from therapy in Chicago, Lisa opened the door to find all her old things the furniture, the masks they collected on their travels, her pots and pans had taken up residence in a house she had never seen before in a suburb she didn't know.
Two months later, on a chilly morning in early 2006, Lisa and Hannah sit on the sofa in the front room, looking out the window, past the snow in the front yard toward a vista of houses and lake and gray sky. It's a nice day to be inside, if you're someone who likes that sort of thing. Lisa shifts her torso on the sofa, hugging the arm of her sweatshirt, trying to find a comfortable position.
After Hannah leaves the room, Lisa slides further into the cushions to talk about her life. She and Steve had had a perfect life: good jobs, frequent trips to the backcountry and far-off places. They had been so committed to the idea of the open road that they had embedded it in their daughters' names: Lillian Marrakesh, after the Moroccan city they loved, and Hannah Moorea, for an island in Tahiti. Now she will be what she calls a "soft mom," reading books to the girls, helping them with homework, giving lots of hugs and cuddles. That's a good mom role, she says, but she had wanted to show them how to be rugged in the world.
She worries that she will burden Hannah with constant requests to "open this" and "pick up that." With Lily, Lisa needs what she wryly calls "adult supervision," because in an emergency she won't be able to rescue the baby, unthinkable to an emergency room nurse. A nanny, 21-year-old Sammie Bickmore, has helped care for the baby since Lisa was in the hospital, and even now, when Steve or Sammie leaves the room and only Lisa is left, Lily cries.
"I didn't wait this long to have children to have someone else get up with my kid in the middle of the night or someone else watch my kids five days a week because I don't have the stamina," Lisa says.
But little by little there is a new normal. Lily likes to snuggle with Lisa now. Hannah likes to lie next to what she calls Lisa's "baby arm" and uses Lisa's hook hand the one Lisa has named "Alfred" as a carry-all for gum wrappers and hairbands. Not long ago, when the children in Hannah's preschool class were asked what makes them happy, Hannah's response, later tacked to the classroom door, was "I'm happy because my mom gives me hugs and kisses."
Lisa and Lily are learning to walk at the same time, Lily at home on pudgy baby legs, propelled by instinct, Lisa in the rehab room at University Hospital, on legs made of titanium and acrylic.
Learning to walk on artificial legs, at 44, means building up the glutes so they're strong enough to launch the legs forward, and training the brain to think about the relationship between knee, heel and toe. Today Lisa is dangling, attached to an elaborate harness that looks like an amusement park ride. Strength comes through exercise but also from the sheer effort of hanging from the harness, trying to move legs that aren't her own. They hang, like marionette legs, from the sockets that fit over her stumps. At the bottom are two running shoes.
She longs these days to be vertical. At home she will wear 8-inch kneeless "stubbies" that resemble pipes on small platforms. But in rehab she is trying to master the grand prize with diligence and a certain amount of luck, she may one day walk on "C-legs" with bending knees and flexible ankles and a microprocessor that lets the two joints talk to each other.
First, though, she must show the insurance company she has mastered the practice legs in rehab. They're heavy and burn energy she doesn't have and may not get. Progress comes in tiny spurts and hinges on small things, like whether the sleeves that cover her stumps are precisely aligned to avoid painful pressure points. She has no guarantee that she will ever really walk, on her own, without the harness, but she works at it, hour after hour, heel toe, heel toe. It's exhausting, and as she tires she beckons to a therapist across the room.
"Christine, do you want to hold me?" she asks, then realizes how funny that sounds. "Hold me," she vamps in a husky voice.
She cannot yet drive and relies on a large network of friends to take her everywhere the rigid schedule of walking therapy and hand therapy and doctors appointments that consumes her time and energy. The friends come, one says, not from a sense of duty but because they long to spend time with her. Even when doctors were removing pieces of her, notes a woman who helped care for her, "Lisa would ask about your kids and knew their names."
Because she lost part of her intestine, she doesn't absorb nutrients well, so eating is one more complication that must be considered and planned. She also lost fat and muscle when skin was taken for grafts. So she picks foods that are high in protein and energy. Once a Doves chocolate girl, she now craves vinegar and salt and green olives, her taste buds altered by the damage to her tongue.
It takes at least an hour to get ready to go anywhere each morning, 20 minutes and someone's help, just to attach her new electric arm. It's a complicated gadget, programmed so that flexing the triceps muscle in her stump opens the hand, relaxing the muscle closes it. To turn the wrist she must swing the upper arm back and forth. The arm is a work in progress: she has to decide if she wants an elbow, because elbows are not necessarily the most practical of nature's inventions. A microchip controls the strength of her grip.
These days, laughter and tears travel side by side. In the car at a drive-thru pharmacy not long ago, Lisa was playing with her electric hand, trying to get it to cooperate. She placed her left hand across the artificial palm to test its grip, which, it turned out, was relentless. She squealed, fumbling to make it let go. As the pharmacist came to the window and peered into the car, Sammie was reaching down Lisa's shirt, trying to unhook the battery to turn it off. At lunch, later in the day, Lisa retold the story and her friends howled with laughter.
She is both grateful for the help she has received from so many friends and envious of those who don't need it. In rehab one day, while Lisa's stubbies are being adjusted, Sammie kisses Lily between the eyes, making the child belly laugh. A small cloud briefly passes across Lisa's face. She would love to be the shelter Lily seeks, but that, like everything else in her life, will take time. Across the room, Lisa begins a waving game and Lily waves back. Soon, mother and baby are giggling at each other across the expanse of carpet.
On the scale of randomness, strep falls somewhere between a stray bullet and cancer: something that seems to come out of nowhere but can't be blamed on chance alone. At night, when the children are asleep and the house is quiet, Lisa and Steve still ask themselves why it all happened. It is less a question about medicine and more about the whys of the universe. But gradually, Steve says, they are reframing the question.
"One of the ways we can get through this is by knowing that the why will not be easily revealed; it will be revealed in time," he says. "So, to keep a positive attitude, instead of saying, 'why did it happen' we say 'why are you here?' "
She is here to love her family and to be loved. She is here to teach her children, even if the lessons might not be the ones she once imagined. She might or might not take them to Morocco. But she can certainly teach them to savor all journeys, big and small.
She has reprioritized the lessons, she says. Love of nature has fallen to third place. First is compassion and open-mindedness toward those who are different, regardless of how. "Secondly," she says, "I want to try to keep our family together in a healthy manner." They are all adapting to new roles, all cautiously learning how to take care of her. Their feelings are still so tender, almost raw, she says.
In dark moments and Lisa admits there are still many she looks at the future and it seems short. She's a nurse, she says, so she knows that her life-span has changed. She will always battle malnutrition. She doesn't know if her heart was damaged or if her kidneys will fail again. She starts now from a weaker point, and any injury or infection or damage to her organs could kill her.
She and Steve have practiced what they will tell Hannah and Lily some day about what happened. It was not the birth that made her sick, it was bacteria, they will say. They will explain it like this: Mommy came back to be with you.
Lily turned 1 two weeks ago. She celebrated by sticking one finger tentatively into her birthday cake, followed by her elbow and more fingers and then her fist. Soon she was covered in frosting and everybody was cheering nurses and neighbors and all the friends who have helped Lisa get through the worst year of her life.
It's March again, that capricious month when the earth can't decide whether to howl or coo, to knock you down or give you hope. Ice, sun, Ides, buds, wind that tears the limbs off trees. The promise that, as always, something new will grow. The month that asks only that you ride her out.
On the anniversary of the first day she almost died, Lisa sits on a snowmobile at Lily Lake, wedged safely between two friends, leaning forward slightly because her tailbone always hurts.
Lorie Hutchison had made a practice run to the area the day before, checking out the site with a critical, can't-walk-to-it eye, watching the weather reports, expanding the list of needed gear to cover every possibility. They have high-altitude sleeping bags and all the toys, the GPS, the medical supplies, a carry board, gear for every conceivable whim of nature.
Everybody but Lisa is a Life Flight nurse, trained in survival, and a couple are also experienced climbers. But they were picked for this journey for one reason: They are her friends, the people with whom she feels physically and emotionally safe.
At night, sheltered in their camp, the women tell stories. The day that started with wind and rain and ice has cleared. The women tease each other around the fire, and, sitting there, Lisa doesn't feel shorter or less capable or more afraid. The trip that was planned to help her see what is possible is also about the food and the weather and the trip in and out and who got lost on the way in and who didn't believe their GPS. It is about friends laughing and life and of just being regardless.The next day, the sun is shining and snow hugs the branches of the aspens. Lorie places Lisa on the snowmobile, and they head off through the woods to a clearing, where they cut the engine. Lisa sits, perfectly still, listening to the silence.