”...we do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantation.” : These words were a death sentence for Sandra Jensen. And that, she decided, just wasn’t going to happen.
A small woman, her silk-fine blond hair cut fashionably chin-length, walks in an awkward, rolling gait to the microphone on the stage of the grand ballroom of Vancouver’s Sheraton Landmark Hotel. Her body shape is un-muscled and pillowy. Her facial features are those commonly associated with Down syndrome--a high forehead inlaid with almond-shaped eyes tilted up at the outer corners, a jaw that tends to be slack in repose.
The woman waits patiently for the audience of about 300 Canadian mental health professionals to settle before she leans into the microphone. She forms the words slowly, her vowels elongated with R’s pronounced as W’s, the music of her speech more monotonic than melodic. “My name is Sandra Jensen,” she says, “and I am retarded. When I was born, the doctor told my mother that she should let him put me in a state hospital and just forget about me because I would never be any smarter than a 3-year-old . . . . “
Among Sandra Jensen’s most obvious strengths are her powers of observation. She is keenly aware of the emotional nuances around her, a talent that allows her to sense the mood of a room when she steps to the podium and gives her great comic timing. It also makes her subject to sensory overload. In the modern world where most have dulled their senses, Sandra is a wind chime jangled by a multitude of breezes the rest of us no longer feel.
Sandra smiles, glancing only occasionally at her notes, which are computer-printed in large, preschooler-sized type. “If my parents had done what the doctors said they should,” she continues, “I probably wouldn’t even have learned to walk or talk or read. Because when I was little,” she lets out a small, throaty laugh, “I sure wasn’t the million-dollar baby!”
Now 35 years old, Sandra has worked most of her adult life on behalf of the mentally disabled population--a group that includes those like herself, who have genetic conditions, plus those whose cognitive functioning has been damaged by accident or disease. The struggle to bring those with mental disabilities into full, participatory citizenship is a fight that many believe to be the last great liberation movement in America. Sandra Jensen is that movement’s poster girl, its sweetheart, its point woman.
She handles her own money, lives in her own apartment in Sacramento and cooks her own meals. She also co-founded two advocacy organizations, has served on a state task force and has addressed a variety of audiences, ranging from parents with disabled children to national legislators. On one occasion, she flew to Washington, D.C., to meet then-Vice President George Bush. As Sandra tells the story, Bush came into the room looking sleepy and disinterested. “He sat down in his big chair and closed his eyes until the photographer came to take pictures of us all.”
“Well, what can I do for you, young lady?” Bush asked Sandra.
“For starters,” Sandra shot back. “You can stop infantilizing us.”
Sandra’s own disabilities are a result of Down syndrome, a chromosomal anomaly with which about 5,000 American babies are born each year. In simple terms, Down’s syndrome occurs when an error in cell development produces 47 chromosomes rather than the usual 46. The extra gene material disrupts the orderly development of the body and brain. Among the main manifestations of this customized gene pattern is mental retardation. Sandra tests at about 45, less than half of normal IQ.
However, a first meeting with Sandra Jensen suggests that the nature and range of human intelligence is more complex than that which can be measured with such conventional tools as IQ tests. If intelligence could be likened to, say, a pool of water, Sandra’s IQ would indicate that hers is a shallow pond indeed. Yet upon observing her for any length of time, it becomes evident that while shallow in some places, in other spots Sandra’s pool is deep and richly hued, with no visible bottom in sight.
After her speech, Sandra goes back to her hotel room to change into a brilliant blue dress for the post-conference dinner dance. Sandra favors bright colors, “up colors,” she says. She avoids blacks or grays. They remind her of the darkness that overwhelms her with increasing frequency.
Sandra always knows when the darkness is coming. She feels faint; her vision clouds; her hearing dims to nothing. These are symptoms that the blood in her arteries has grown thick and sludgy, like ice clogging rivers in early spring. As a result, the flow of oxygen can’t get adequately to her brain or her extremities. Her heart works too hard to compensate. Eventually, there is congestive heart failure. Tonight the symptoms come on in the middle of the dinner dance. Sandra’s companions rush her to the hospital, where she remains for five hours until the emergency has passed.
From the time she was old enough to understand such things, Sandra has known she is likely to die young. She has a hole in her heart that constantly leaks blood. This congenital heart defect, which occurs to greater or lesser degrees in 50% of all Down people, grows worse if unrepaired, and eventually results in early mortality.
Sacramento physician Philip Bach has been Sandra’s cardiologist since 1985, when her condition first showed signs of worsening. A large-framed, extravagantly bearded man who could easily be mistaken for Jerry Garcia’s younger brother, Bach had initially been able to keep Sandra’s condition under control with increasing doses of medication. By the time 1994 drew to a close, however, Sandra’s heart episodes had become so frequent that Bach sent Sandra to UCLA for a complete cardiac evaluation.
UCLA sent back bad news. The leakage from her heart had shunted blood into her lungs, causing irreversible scarring. Her overworked heart was growing tired. It was only a matter of time before her heart and lungs would give out altogether. Bach figured Sandra had two years at the outside. “Less if she gets sick,” says Bach. “One bad flu and she’d be past the point of no return.”
Bach and the UCLA cardiologists recommended the only course of medical action that could save her: a heart-lung transplant.
The news both scared Sandra and relieved her. The surgery meant that she could have her life back. Swimming had been one of her main pleasures, but for months she hadn’t been well enough to use the pool at her apartment building. In the last year, flying had become out of the question because her lungs couldn’t withstand the change in altitude. This meant she had to turn down most out-of-town speaking engagements. Even occasional train trips to visit her mother and stepfather in Eugene, Ore., had become too strenuous. Her primary form of recreation had been reduced to talking to her friends for hours every night on the phone and watching movies and “I Love Lucy” reruns. She didn’t want to go to sleep because lately she had been having the same dream, the one where her heart stops altogether. Doctors had always told her mother that Sandra would be lucky to live to age 15 or 16. At 35 she has pushed her luck way past what anybody thought possible.
When Bach first started to arrange a transplant for Sandra, he never imagined he’d run into opposition. At the beginning, everything went smoothly. Medi-Cal, Sandra’s insurance provider, agreed right away to pay for the $150,000-plus operation. Medi-Cal’s only stipulation was that the surgery had to be done by one of the two California-based transplant teams that had the best one-year survival rates--UC San Diego and Stanford University.
As transplant programs go, Stanford is California’s 800-pound gorilla. The first U.S. heart transplant was done there in the ‘60s. Fifteen years ago, when the world’s first heart-lung was performed, it was at Stanford. Last year, there were 69 heart-lung transplants in America. Stanford did nearly a quarter of them.
Bach forwarded the proper paperwork to Palo Alto in February, 1995. The reply came the next month in the form of a three-sentence letter: “Unfortunately, at this time, we do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations.”
Just like that. Sandra was rejected in language as neutral as if Stanford had just found her ineligible for, say, the country club. Except, of course, this wasn’t a country club rejection. It was a death sentence.
Bach quickly sent Sandra’s records to UC San Diego. Seemingly more accommodating, the university invited Sandra to the medical center for a formal evaluation. On June 28, Sandra and her mother, Kay, made the trip. Three weeks later, Bach got the UCSD letter. “I regret to inform you,” wrote Cecilia Smith, medical director of the transplant program, “that it is the recommendation of the transplant committee that Ms. Jensen not be a candidate for heart-lung transplantation at our program. . . . Ms. Jensen is limited in her ability to have recall and memory. . . . We are left with great concerns of her ability to not only adhere to the medical regimen require of her, but to understand the complexities of the transplant procedure and the complication she will face after the transplantation. . . . “
In other words, Sandra was too stupid to have the transplant.
Stunned, Bach wrote an agonized letter to both teams asking them to reconsider. UCSD and Stanford responded with silence.
The refusal of two of California’s major medical institutions to consider Sandra for the only procedure that could save her life was alarming enough by itself. But it pointed in neon at the larger underlying prejudice to which every American with mental disabilities was still subject. Sandra and her disabled colleagues each have stories of identity trampled and rights denied. James Drake, a close friend of Sandra’s, was confined against his will to a state mental hospital as a young adult. Tom Hopkins, an open-faced man who likes to quote Dickens and Dr. Martin Luther King Jr., tells how he graduated from high school and was put by his well-meaning parents in a “sheltered workshop” for four years to receive carpentry training. The training, he says, consisted of sanding blocks of wood and separating nuts and bolts into piles.
“In our down time, we would sit and rock to the hum of the Coke machine.” To demonstrate, Hopkins dulls his eyes, wraps his arms around his shoulders and begins to rock. It is a humorous and terrifying imitation of a disintegrating soul. “After a while, you come to really like the hum of the Coke machine,” he says, still rocking. “And soon you start to hum along with the hum of the Coke machine. All of those places--sheltered workshops, segregated schools, big nursing homes--promote trained vulnerability. You are taught over and over again that you don’t know anything, that your decisions don’t mean anything. You have only other disabled people as your role models. You have keepers instead of teachers. This is the retarding environment. In these places, you just get worse.”
One of Sandra’s fears is that she will someday be sent to a state hospital. Several years ago, she was part of a state-commissioned task force assigned to assess the developmental disabilities service system in California. The hospitals at Porterville and Camarillo were among the facilities surveyed. There, for the first time, Sandra saw groups of people who looked like her but who had now been reduced to an undignified and vacant state: Down syndrome adults whose hospital gowns only partly covered their bodies; men and women who did not respond when you called out to them; expendable creatures no longer fully in this world.
“It was very traumatic for me,” she says. “Very traumatic.”
Now it appeared that the medical establishment was willing to throw her away.
Desperate for a way around the Stanford and UCSD rejections, Bach began inquiring to see if any other Down syndrome patients were on heart-lung transplant lists. After all, there were more than 250,000 Americans currently with Down syndrome, more than a third of whom had, or would develop, the cardiological manifestation that was killing Sandra. Bach was taken aback to find that no heart-lung transplant had been performed on a Down syndrome patient in the 15-year history of the operation. Why was that? he wondered.
Unable to find a substantial medical reason why Down patients were shut out, Bach began to think that the problem was more one of ignorance than malice. It seemed that most physicians knew little more about Down syndrome than what they had learned in a two-hour class on the subject in medical school. “I doubt if many of them know what capabilities Down patients have mentally,” Bach says. “The difference with me is that I’d been seeing Sandra for 10 years when the question of a transplant came up. But if Sandra had seen 10 cardiologists as a new patient, I’d guess nine of ‘em would have said, ‘A heart-lung transplant? Out of the question.’ ”
There was also the issue of statistics. “These days all the insurance companies are demanding numbers,” Bach says. “Consequently, more and more hospitals are worried about their success rates. If your hospital does five transplants a year, one patient can be the difference between a 90% success rate and a 70% success rate. You lose one patient, and all of a sudden your program gets dinged. The insurance companies won’t approve you, and you get taken off the Medi-Cal list. Look at UCLA--they’re a world-class hospital--they’re not on the heart-lung list. So the bottom line is that most Down patients don’t ever get to the point of applying for a transplant. They just die.”
Sandra was at the time working for Dr. William Bronston, a consultant to the state Department of Rehabilitation, who employed her on a free-lance basis to give talks to groups of educators, parents with disabled kids and the kids themselves. The rest of her time was taken up working with the two groups she had helped found--Capitol People First and Peer Advocacy, organizations that help the disabled lobby on their own behalf.
Sandra and her friends quickly began to strategize. Bronston organized a press conference at which Sandra spoke. “These doctors,” said Sandra, “they just don’t understand the bigger picture. I’m going to help them understand.” The Sacramento Bee printed a string of sympathetic stories that hit the national wires. Overnight, Stanford and UCSD were flooded with outraged letters and e-mail.
Sandra and her mother also hired Michael Kluck, an attorney from Protection and Advocacy, a federally funded nonprofit group that provides legal services for people with disabilities. Kluck concluded that Stanford and UCSD were acting in a manner that was discriminatory under the Rehabilitation Act of 1973. In mid-August, Kluck sent both universities letters stating his intention to file a legal complaint. By September, a jittery Stanford and UCSD had contacted Bach to say they would be delighted to see Sandra for another evaluation.
Sandra and her mother also retained Michael Kluk, an attorney from Protection and Advocacy, a federally funded nonprofit group that provides legal services for people with disabilities. Kluk concluded that Stanford and UCSD were acting in a manner that was discriminatory under the Rehabilitation Act of 1973. In mid-August, Kluk sent both universities letters stating his intentions to file a legal complaint. By September, a jittery Stanford and UCSD had contacted Bach to say they would be delighted to see Sandra for another evaluation.
Sandra and her mother trekked to San Diego and to Palo Alto in October. The resultant UCSD letter amounted to nothing more than a “yes/but.” Yes, they were willing to put Sandra on the waiting list of prospective organ recipients, but only if the state of California would guarantee round-the-clock nursing care and supervision for Sandra in perpetuity. In the present budget-crunching political climate, this seemed a rather astonishing expectation. Sandra’s supporters concluded that UCSD had merely found a way of appearing to say yes while really saying no.
Stanford reacted even more unnervingly. There Sandra was interviewed for more than an hour by Dr. Reda Girgis, who described to her the myriad ways this operation might kill her. Then Stanford followed up with a letter to Bach that read in part, “At this time, Sandra is not sure whether she wants to pursue a transplant. . . .” The letter went on to describe a “panic-type reaction in response to discussions of complications after transplantation. . . ,” which Stanford indicated might preclude her as a transplant candidate.
This time it was an infuriated Sandra who fired off the official response to Stanford. “You said I didn’t want a transplant!!!” Sandra printed in a large, emphatic hand in a letter dated Nov. 13. “That means that I do not want to live. . . . Your attitude stops you from hearing me say loud and clear that I want a transplant. You must finish my evaluation and put me on the waiting list now! I have a lot to live for, my friends, my self-advocacy. Do you understand?”
Sandra’s supporters released a copy of her letter to the press. After yet another round of negative news stories, plus more calls from attorney Kluck, Stanford and its attorneys appeared to understand that they had to do something. By mid-December, Sandra was scheduled for another evaluation.
Sandra’s mother was still cynical. A pleasantly mannered woman in her mid-50s, Kay De Maio is far stronger than she appears, especially when it comes to defending her daughter. All through Sandra’s childhood, she says, there had been prejudice, especially from professionals. The family dentist would work on Sandra’s brother but refused to see “retarded people.” The teacher at the co-op nursery school where Kay sent her other children asked her not to bring Sandra. “I guess they thought what she had was contagious.” Even when Sandra was born, a nurse friend of the family called Kay’s mother. “They just took the baby away, didn’t they?” said the friend. “I mean they didn’t let Kay see the baby did they?”
On Dec. 6, 1960, a little after 11 a.m. at Sutter Memorial hospital in Sacramento, Kay remembers being wide awake in the delivery room staring at the obstetrician who had just delivered her breech baby with forceps. An expression on the doctor’s face discomforted her. The red-haired obstetrician was frowning as he gazed down at the baby girl in the clear plastic hospital bassinet. He reached out with his right hand and snapped his fingers in front of the baby’s face, then tapped sharply on the side of the bassinet.
Kay had been through childbirth once before, with her son, now 2, so she knew this wasn’t normal delivery room protocol. Maybe the umbilical cord had been wrapped too tightly around the baby’s neck, she thought. Maybe that was the reason for the snapping and tapping.
Neither the doctors nor the cheery nurse, who wheeled Kay to a hospital room where three other new mothers were also recovering, told her of any problem. However, an hour later, she was moved to a private room, and she became scared. They’re moving me because these are happy mothers with healthy babies, she thought. They don’t want me to be around happy mothers because something about my baby has gone wrong. A few minutes later, another frowning doctor came into her room. This time it was the attending pediatrician. “We’ve got big trouble. . . ,” he began. “Your daughter’s a Mongoloid. . . .”
Soon the snapping and tapping obstetrician came in and began to outline the implications of Kay’s daughter’s condition. “I know this is hard,” the doctor concluded, “but the best thing for you to do is to institutionalize this baby right away. Put her in a state hospital before you form a bond with her. I’m sorry.”
Kay sobbed until she thought she would faint. Not bond with the baby? she screamed silently. What did he think she’d been doing for the last nine months? And now she was expected to toss her daughter into the trash like a carton of milk gone bad?
In the years following, Sandra’s mother and father attempted to raise their daughter as normally as possible. Sandra went on camping trips and Disneyland vacations with her two brothers; was chosen cheerleader at her special ed junior high; had a best friend; graduated from a regular high school with the rest of her class.
Still, while her brothers could read by age 6, it took Sandra until she was 12 to learn to read the simplest book from beginning to end. In high school the “regular” kids were often mean. And when it came time for such teenage rites of passage as getting a driver’s license, although Sandra could pass the written test, the driving test was, and always would be, out of her range of abilities. Perhaps the hardest moment was when Sandra acknowledged that raising a baby would overstrain her sensitized nervous system. “She really, really wanted to have a child,” says her mother. Sandra relinquished the idea of motherhood only after she heard that nearly half of all babies born to Down mothers are Down babies.
Watching Sandra negotiate day-to-day life brings the crux of her situation into focus: To be mentally retarded in ‘90s America is to be regarded as a broken thing, with too many pieces missing to be truly useful. This damaged image of self is reinforced in a hundred small ways. When Sandra is at dinner with a group of non-disabled companions, she orders for herself. However, although Sandra speaks directly to the waitress, a nervous girl in her 20s, she does not look or speak to Sandra. She instead addresses Sandra’s nearest dinner companion. Sandra-as-ghost persists for the entire evening. Sandra speaks to the waitress. The waitress speaks to the companion.
On most such occasions Sandra either fixes the offending person with a stare or ignores them. But when the threat becomes extreme--as when she felt so misunderstood at Stanford’s first evaluation--Sandra’s coping mechanisms become magnified. Like a sea anemone, which transforms itself in response to its environment, Sandra’s physical appearance changes according to her mental state. In relaxed and confident times, Sandra is attractive, glowing, her exquisitely sensitive emotional antennae strummed by the social currents around her. However, when conditions feel perilous, Sandra sucks all vulnerable parts of herself inward, leaving visible only a lumpen surface, a person who, to the untrained eye, appears to be dulled, dumbed-down, with minimal capacity for response.
One evening between evaluations, Sandra and some of her supporters got together at a Middle Eastern restaurant for dinner. For weeks friends had noticed how the stress of all this uncertainty was weighing on Sandra. It’s hard being point woman for a movement when you’re dying. This night, however, the mood was convivial, and for a while the old, energetic Sandra seemed to be present.
Toward the end of dinner, talk turned to a story of a disabled man whom Sandra knew. The man had been an honors student and an athlete, but a motorcycle accident had left him with physical and cognitive disabilities. His parents put him in a nursing facility in Sacramento known as The Gardens. Sandra met him when he began coming to meetings of Capitol People First, of which she was then president. As the young man, whose name is Colin, observed what Sandra and friends had accomplished, he wanted to try living on his own. His parents, who are his legal conservators, refused to entertain the notion. Wishing to become his own conservator, Colin retained a Protection and Advocacy attorney. His parents told him they would never speak to him again if he challenged the conservatorship. Colin gave up. The last anyone had heard, he was still living at The Gardens.
When the story ended, Sandra was uncharacteristically quiet. Later, back at her apartment, Sandra said how painful it was for her when people like Colin give up. Then she grew silent again. She stood in her kitchen, arms hanging limp at her sides, her expression suddenly wistful and unutterably weary.
“Sometimes I feel like giving up too,” she said. “Everyone expects me to be strong. To be like a hero. But sometimes I get so tired. . . . “ Her voice trailed off, her gaze wandered absently. “I know I’m retarded,” she said when her gaze returned. “I know that can’t be fixed. But if I could change myself. . . . I wish I could be reborn. I don’t want to be slow anymore. I want to be fast. Sometimes I have dreams about it. I dream things like being able to tap dance, or do a little ballet.”
Sandra smiled sadly. “But then I wake up. And I’m the same. I walk slow. I talk slow. My mind moves too slow. And sometimes that’s harder than anybody understands.”
On the day of the final Stanford evaluation, the Sandra who rolled her wheelchair into the Chest Clinic waiting room was the retreating anemone. The doctor nominated to do damage control on behalf of Stanford is the team’s medical director, Dr. James Theodore, a former star halfback for the University of Pittsburgh, who sports a Greek-hero mop of white hair and a manner alternating between cherubic warmth and the tough guy swagger of a longshoreman. Theodore was unusually patient and respectful with Sandra. Both she and Kay began to feel hopeful.
“OK, I admit it,” Theodore said privately after the evaluation was over, “maybe in Sandra’s case we didn’t give her an entirely fair chance. But we’re giving her that chance now.” If she’s in good enough shape, Theodore said, they’d put her on the list.
Theodore’s positive response gave rise to a new specter of worry. What if a belated chance was no chance at all? In the year since she had begun seeking the transplant, it was clear to everyone that Sandra’s condition had drastically deteriorated. Was it possible that Stanford had come around, but it was too late?
On Jan. 11, Stanford answered the question. “We’re going to go ahead with her,” said Dr. Theodore. “There’ll be some risks involved. We still don’t know how tough is it going to be to do a Down patient, but we’re going to find out.” He sighed. “The lawyers have been all constipated about this case. But the truth is, we’re taking a little risk with her. I hope I didn’t make my decision for the wrong reasons.” A pause. “Of course, if Sandra doesn’t do well, it’s probably going to shut the door for the rest of the Down patients for a long time.”
One war ends. Another begins. Although Sandra had forced her way onto the transplant list, because of the terrible shortage of organ donors, there was no guarantee that a heart and lungs would become available for her in time to save her life.
Even under the best of circumstances, most people are on the waiting list for a minimum of a year--and usually much longer. Last year, although 69 heart-lung transplants took place in the United States, as of March of this year 201 were still on the list. Within the next 12 months, at least one fourth of those people will die waiting.
Kay confided that for months she has been corresponding with an online transplant support group on Prodigy. The group’s most beloved member was a young woman--a girl with no mental disabilities--who’d been waiting for a heart and lungs since she was 16. On Jan. 3, the girl turned 20, and the support group had her birthday party online. three days later, she died. “I don’t even want to think about what it implies for us,” said Kay.
A few minutes after 7 p.m. on Monday night, Jan. 22--four days after Stanford gave the final go-ahead--the impossible happened. Kay got the call first. She then reached Sandra in her apartment. Barbara Blease, a longtime member of Sandra’s support network, answered the phone.
“I need to talk to my daughter,” Kay said. “But first, go put your arms around her. Then hand her the phone.” Barbara followed instructions to the letter. “Sandra,” Kay was barely able to get the words out. “This is it. They’ve got your heart.” A long pause on Sandra’s end: “Do they have my lungs?” Kay told her, yes--they have everything.
The next minutes were a blur of action. Sandra methodically packed her medications and grabbed her warmest jacket. Blease and another friend coordinated with Stanford about transporting Sandra to Palo Alto. Harvested organs typically have a shelf life of between two to five hours, so speed is everything. It was arranged that Sandra would be driven to UC Davis Medical Center, from which she would be taken by helicopter to the roof of Stanford Medical Center.
“Repeat after me,” said Blease as she walked Sandra toward the waiting aircraft. “I am woman. I am strong! I am invincible!” Laughing, Sandra whispered the words as the helicopter doors closed. The weather, which had been foggy all week, was so clear it seemed enchanted. Back at home in Eugene, Kay raced to her local airport and just made the night’s last plane out of town. By 10:30 p.m. everything was set to go forward. Sandra’s voice was strong as she joked with friends who called the hospital room, but by 1 a.m. her voice began to lose its confidence. “I’ll see you when you wake up,” said a friend. “If I wake up,” she replied softly into the phone. “I’m not ready to die tonight.”
At 1:45, Kay watched as Sandra disappeared through the double doors of the operating room. Surgery did not begin until 4:45 a.m. and was expected to take approximately four hours. While she waited, Kay floated herself in a haze of positive thought, consciously blocking out all the high-risk downsides of this operation--like the fact that 30% of all heart-lung transplant patients don’t live out the first year.
At 8:45 a.m., Kay saw Dr. Theodore walking toward her. She attempted to read his face. “The new heart and lungs are in place,” Theodore told her quickly. “Sandra is still extremely critical but she has made it through surgery.”
By 10 a.m., Kay was able to enter Sandra’s cubicle in the intensive-care room. Although Sandra was attached to a tangle of tubes and wires, her skin was now flooded with the oxygen that her failing heart had denied her. She was beginning to flush the color of iridescent apricots.
In the weeks that followed, Sandra’s condition was tenuous, a roller-coaster ride to an uncertain destination. Her blood pressure dropped through the floor, her potassium level shot to nearly heart-stopping levels. She had a bout of “ICU psychosis” and hallucinated snakes writhing in her bed. Then on Valentine’s Day, the cloud lifted. Sandra was deemed well enough to be moved to a private room.
When I fly up to Palo Alto to visit Sandra in mid-March, she meets me at the front door of Stanford Medical Center. It’s the first time I’ve seen her post-surgery and I am startled by the difference in her appearance. Her skin, once dusted the color of ash, is now the soft pink of rose petals. Her fingers, which were clawed and bluish, have straightened. Even her tongue, unnaturally purplish for as long as I’ve known her, is rosy pink.
She has just been upgraded to outpatient status, but she must come back to be hooked up to an IV line three times daily. Nonetheless, she’s exhilarated and wants to use the break between her afternoon and evening hook-up to go on an adventure. Her desires are prosaic: a trip to a drugstore to buy a few personal items, then dinner.
At the drugstore, she dithers over the color of a toothbrush, the brand of toothpaste, the flavor of mouthwash, then apologizes for dithering. “It just feels so good to be able to do this,” she says. At dinner, she talks about the future. “I’ll always be an activist,” she says. “Everybody has some talent. It’s my talent. I just want to be able to use my talent.”
I ask if she still has the dream that used to keep her from sleeping--the one about her heart stopping. “No,” she says. “I don’t have that anymore.”
As the evening closes, I watch Sandra walking with her mother up the hospital ramp to keep her next IV appointment. I think how small she looks, her body still pillowy and hunched over. How frail. How unlikely a heroine.
At one point during our outing, Sandra wants to stop by the outpatient apartment facility where she and her mother are living. There she shows me shopping bags full of cards, letters and presents that people from all over the country had sent following her surgery. Some of the cards are from people she knows or has met. There is a get-well message from Philip Lee, undersecretary of Health and Human Services, plus a copy of the official get-well proclamation read into the record of the state Assembly. Most of the mail is from ordinary folks who have heard about Sandra and feel moved to tell her how glad they are that she fought to get a new heart. For them, Sandra has become a sort of everywoman whom they couldn’t bear to see thrown away, lest they themselves turn up someday on the throwaway list.
Maybe in the end, that’s the point of Sandra’s story. In a political environment where talk of scarcity is everywhere, and the list grows ever longer of people it is deemed acceptable to throw away, lock away, legislate away--Sandra Jensen has said: “No. My life has value. You can’t throw me away.” And maybe, in the end, the ones who had the power to throw her away understood that what was at stake was not so much the life of Sandra Jensen, as it was their own humanity. And so they listened.
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