Carrots Don't Cry
Doctors said that Marsi Tabak would remain in a persistent vegetative state for the rest of her life. With tireless dedication and a warehouse of faith, her husband proved them wrong.
"True redemption is the freedom from preconceived notions and breaking out of the bonds of hopelessness, knowing that the Almighty is with you and making miracles for you all the time," says Dr. Yacov Tabak. He should know. Seven years ago his wife, Marsi, suffered prolonged oxygen deprivation after a heart attack and was given a grim diagnosis: persistent vegetative state (PVS).
But unlike Terri Schiavo's husband, Michael, who petitioned the courts to have her feeding tube removed which led to her death last month by starvation and dehydration, Dr. Tabak and his family have proven that with tremendous patience, tireless dedication and a warehouse of faith, a "vegetable" can return to the human race.
Passover is a particularly special holiday for Yacov. While Jews around the world celebrate the birth of the Jewish nation and God's miracles of salvation through the bondage of generations, Marsi has been on her personal journey from bondage to redemption every day for the last seven years.
As a young married couple, the Tabaks moved from New York to Israel 29 years ago. Yacov, a PhD chemist, made his mark in the field of industrial and corporate chemistry. And Marsi, a literary genius, rose to the top of the Jewish publishing world. As editor-in-chief of Feldheim Publishers, she was responsible for many of today's popular Jewish titles and could see the potential of a manuscript that had been relegated to the scrap-heap, fashioning it into a best-seller.
But all that changed on the morning of November 17, 1997. Marsi was feeling pain in her lower jaw, an indication, primarily with women, of stress on the heart. She went to rest until the pain subsided, but three minutes later, she was no longer breathing. Yacov found her without a pulse. He immediately began CPR and chest massage with one hand, calling an ambulance with the other. Twenty minutes and many electric shocks later, Marsi's pulse returned, "as if God grabbed the Angel of Death by the scruff of the neck and finally threw him out of the room," Yacov remembers. But severe neurological injury had already been sustained.
Within two hours, Marsi's Hebrew name was changed (a way of perhaps changing her original destiny) and a chunk of the Tabaks' savings was given to charity. By the next morning she was still alive, on a respirator but breathing 80% on her own, with the nursing staff reporting a strong will to live.
"Marsi gave me 30 wonderful years," says Yacov. "In fact we met exactly 30 years before, on Thanksgiving weekend, 1967. It was love at first sight, and I'm still a man in love. That morning I knew that it was now my turn to give back. I was going to take care of her, whatever she'd need, whatever it would take."
He was at her bedside every day, speaking to her, encouraging her, but there was no sign of any response. She was in a deep coma. After 10 days in intensive care, Marsi was transferred to internal medicine -- and then she opened her eyes. The family was excited. This was progress. She seemed to be wakeful for a few hours and then fall back asleep. However, during the wakeful time, the neurological team was unable to make any contact. There was no response to standard assessment tests. There was no response when family members spoke. There was no facial reaction whatsoever, just a blank, vacant stare.
Marsi's situation was considered irreversible, the experts agreed, and advised the family to move her to a long-term care facility.
The neurologists didn't leave much room for hope. Although she appears to be awake, they said, she is actually in a persistent vegetative state (a "vegetable," in the vernacular). Anecdotal evidence of patients waking up after prolonged comas are, for them, just that -- anecdotes, not subject to additional scientific evaluation. Marsi's situation was considered irreversible, the experts agreed, and advised the family to move her to a long-term care facility.
Dr. Tabak couldn't bear the term "vegetable" when it was first presented to him, and since the Terri Schiavo ruling, says that some in the medical community have shown an ulterior, ugly side regarding this appellation. "There is a medical agenda with this term," Dr. Tabak contends. "It's very difficult to get emotionally involved with a vegetable. To have a relationship with a carrot goes against human nature. But there is an underlying subtext here. If a person is a vegetable, he can be sliced up like a vegetable for a higher purpose. Perhaps for research, or for organ appropriation. His guardian can decide if he has the right to live or die. If value of life is now being determined by a subjective definition of quality of life, who's to stop hospitals from having a mandatory tissue-type registry for 'vegetables' in case a person with a defined 'better' quality of life needs an organ? This is a steep, slippery slope."
With PVS patients, the cortex, or outer layer of the brain which controls all motor functions, is severely damaged and shuts down. Autonomic functions such as heartbeat and breathing, and even some reflexive eye movements such as tracking objects and tearing, are controlled by the brain stem which is still intact. In the neurological fraternity, the debate continues as to whether the cortex can be regenerated. After contacting numerous families whose loved-ones were said to have miraculous recoveries, Yacov Tabak was firmly entrenched in the second position.
All the proof he needed came two days after Marsi opened her eyes for the first time. Shani Tabak, then 24, was at her mother's side, speaking to her heart. "Mom," she said, "you have to get better. I can't get married and stand under the chuppah without you."
And then Marsi began to cry.
"Then I knew she was with us," says Yacov. "Her hearing was intact -- the auditory nerves were apparently not injured. Her memory was intact, she knew who was speaking to her, and her emotions were intact. That was a pretty good inventory to start with. But our joy was limited by the sudden realization of the great danger Marsi was now in. The doctors could destroy her will to live. I went to her and said 'Marsi, we know you can hear us, we are with you, we're going to help you get well. Now, the doctors are going to say some pretty terrible things that you will hear, things like, 'This patient is a vegetable and has no hope for recovery, we are going to suggest to the family that she be put away in a facility, she'll be a vegetable for the rest of her life…' Imagine if a person hears this and his cognition is intact. It's like a person waking up and realizing he's in a coffin and the lid is being nailed shut. He wants to shout, 'I'm not dead yet!' but no sound comes out. Marsi was in such a state. For the first four months she suffered from cortical blindness, so she not only couldn't move but couldn't even see, and the outside world couldn't hear her silent scream."
The defining moment for any patient to have a fair chance at recovery, says Dr. Tabak, is when the family realizes that the patient is "there." There were other indications as well. As a heart patient, Marsi was hooked up to a heart monitor which the family learned to constantly observe as it was a sort of index of her mood. When she was told her elderly father was coming to visit, her heart rate went up 20 points.
What did the doctors say about this? "They were very nonchalant. 'Now go prove that the heart changes are from a specific outside stimuli and not from some reflex.'" The medical team shrugged off these seeming developments as coincidence and reflex, but Yacov was convinced that his wife was still with them.
"We believed that Marsi was with us, but she was in a state of total paralysis. To look at her, you would think she is in a coma; she is totally unreactive. The facial muscles don't respond. There is a vacant stare. But she can feel. Feelings are not part of the voluntary muscle system. They are automatic like breathing and digesting. But, in order to have feelings, one has to have cognition. In spite of the neurologists' agenda that propagates the idea that 'no one's home', it was obvious to me that in this case they were mistaken. I believe they make this dangerous mistake many times. I am in touch with many families, and I encourage all of them to look for some sign, however small, that there is cognition. I am sure Marsi is not an isolated case."
With this realization, Yacov made a daring commitment. At the first opportunity, he would take his wife home and together the family would embark on her rehabilitation. In the interim, Marsi was transferred to a long-term care facility in Jerusalem, where the watchful eyes of the family made maximum use of every incremental change. Marsi could hear, they were convinced, and she had cognition. How would they teach this once-literary star basic communication?
In the back of Dr. Tabak's mind was the heroic story of Jean-Dominique Bauby, editor of the Parisian magazine, Elle. Brain stem damage left him totally paralyzed; the only voluntary muscle that worked was his left eyelid. He managed to dictate an entire book -- one letter at a time, all with eye blinks -- to his dedicated secretary who painstakingly deciphered his alphabet code. The book was published two days before he died.
Dr. Tabak was ever on the lookout for some voluntary movement, something they could harness to affect rudimentary communication. Then he noticed that Marsi began to move her right leg, however slightly. Two highly-skilled occupational therapists, Judy Wein and Dr. Tamar Weiss, were enlisted to help. Their company, Mishol, works with augmentative computer communication for the severely handicapped. If the patient can move any muscle even slightly, a sensory device is placed there. Then a question is asked. If the answer is "yes," the patient is told to move that muscle. There is an audio feedback hookup, so if the muscle moves, the patient hears the positive feedback as well. This is necessary since reaction time could take up to several minutes due to severe neurological damage and the communicator may miss the answer that was so desperately attempted.
Later, Marsi learned to communicate with eye blinks. But for the first four months she suffered from cortical blindness. The eyes were intact, but the damaged cortex prevented impulses from being registered in the brain. Then one day, her sister entered the room in the care facility and turned on the light. Marsi blinked. She was sensitive to the light! Another breakthrough. When there is prolonged loss of vision, the brain has to retrain itself to see again. There is standard vision therapy for people who have regained their sight after a period of blindness, but for someone defined as a "vegetable," the doctors said, why bother?
Marsi learned to communicate with eye blinks. One of the first words she spelled on her own was "KAFKA."
The Tabaks didn't despair. They brought in their own experts and vision therapy was then initiated. "When someone regains sight, the first color they see is red, so we wrote in red pen, 'Blink' and Marsi blinked. 'Blink twice,' and Marsi blinked twice," Yacov recalls. It took almost a year until Marsi was able to use blinking for basic communication with alphabet scanning. Today, he says that she can read in both English and Hebrew, and her eyes track the page from left to right or right to left, depending on the language.
One of the first words Marsi spelled on her own with eye blinks was "KAFKA." An allusion to Franz Kafka's horrifying story, Metamorphosis, in which a man wakes up one morning as a cockroach, flat on his back unable to move. "We knew exactly what she meant," says Yacov. "A powerful intellect trapped in a body that shut down."
Yacov gives much credit to Dr. Yehudit Luttvack, a speech therapist at Hadassah Mt. Scopus who worked with Marsi while she was still in the hospital. Dr. Luttvack is herself confined to a wheelchair and is extremely limited in movement. Yet she is one of the most innovative therapists in Israel, teaching Marsi how to swallow, against the dire warnings of the neurological team. She saw that Marsi had a good gag reflex, meaning food would not accidentally go down her windpipe and cause dangerous complications, as the doctors feared.
Doctors were preparing for the surgical implantation of a permanent gastric tube from the esophagus through the stomach walls, bypassing the throat to prevent choking (similar to Terri Schiavo's feeding tube) to replace the temporary naso-gastric tube ("zonda") that was installed after the heart attack. But Dr. Luttvack developed a method of serving Marsi food through the mouth without compromising her safety. Today Marsi is served her meals in the normal fashion.
Dr. Tabak felt that the care facility, which was an important interim training ground, was not especially equipped to take unconventional measures to improve Marsi's situation. His personal research indicated that massive amounts of physical therapy might improve neurological regeneration. The facility provided less than half an hour a week, more as a concession to protocol than as a hope for healing. The patients, after all, weren't really expected to get better. Yacov wanted at least an hour every day, but an outside physical therapist was against regulations.
Instead of Prozac, we'll give her love. Instead of more medication, we'll take her home. That will save her from the deep pit of depression."
The family agreed that home was the best option for any chance of real recovery. With a government grant to assist in home renovations, equipment and home care, plus the benefits from various insurance policies, Marsi and her family came home, eight months after the attack. "At that time we took a physician who is an expert in rehabilitative medicine to have Marsi evaluated. He felt that she had full cognition but because she was so severely handicapped, she should be given anti-depressants to prevent her from losing her will to live. I didn't want to burden her already overburdened system with more chemicals, so I presented the doctor with another option: Instead of Prozac, we'll give her love. Instead of more medication, we'll take her home. That will save her from the deep pit of depression."
The Tabaks' married son David and his wife Raphaela moved into the house, and now have two little girls who have a loving relationship with their grandmother. Two dedicated Philippine women ("angels," Yacov praises) give round-the-clock care. Maria, who has been with them since the beginning of the journey, came to them after several potential candidates turned them down. After all, working with a woman who is helpless and doesn't move is a challenge not every caregiver is up to.
One of the most encouraging incidents came the following year, on the eve of Yom Kippur, 1999. Because of her precarious health, she had a rabbinic ruling to eat on Yom Kippur. It was just before nightfall, they had already lit the candles ("We light candles together with her every week.") and Maria had a problem. She could not succeed in serving Marsi food or medicine. Marsi simply refused to cooperate. It was Yom Kippur and she was part of the Jewish people.
Her sister, who lives across the street, was there and, immediately grasping the situation, offered Marsi an acceptable solution: she could eat by "shiurim," small amounts in timed increments, a method used by those who are not allowed to fast but still remain in the category of fasting according to Halacha. Marsi understood and apparently agreed. Maria would serve her three spoonfuls, and then Marsi would lock her jaw until four minutes were up. Maria would try to add an additional spoonful, but Marsi held her own. Yom Kippur is Yom Kippur.
Such incidents help beam light into a slow, arduous and often frustrating process. From where does Dr. Tabak draw his strength?
"When Marsi became ill, I cried several times a day. After a few months, it was once a day, and now I cry every few weeks. It helps relieve the tension. I have to constantly renew my resolve. But mostly, I rely on the Senior Partner. Without God's sustaining presence, I would fall apart. I have no ill-will toward those who have chosen differently, who keep their loved-ones institutionalized and visit them occasionally. To do what I did, you need a strong backbone and fearlessness in going against the medical tide, and most important, dedicated family members surrounding you. But if a person is willing to go that route, he should know one thing: the doctor doesn't have the last word.
"None of the care facility staff ever followed up to find out what happened to us and our 'vegetable.' But I can understand them. From their vantage point, a vegetable has no cognition, so what's there to follow up? And if there is drastic improvement, it's called a 'medical miracle.' 'Miracles' don't interest them because they are not statistical. But I am convinced that Marsi is no different from many other people in PVS who have been misdiagnosed as having no cognition."
In the last week that Terri Schiavo was being starved to death, a CNN television crew traced down Dr. Tabak and filmed the family for three hours. The three-minute clip was shown 12 times over that week. Maria was asked whether she thought the woman on TV with the vacant stare was indeed conscious as her parents contended. "Of course," Maria answered. "I can see it in her eyes. I have worked with such a person, 24/7, for the last seven years."
While the Tabaks are heartbroken over Terri Schiavo, they are equally encouraged by Sarah Scantlin, a 38-year-old woman from Huchinson, Kansas, who began to talk after being in a "vegetable-like" state for 20 years. Scantlin was knocked down by a hit-and-run driver as she was walking to her car and left for dead until someone resuscitated her. For years she could only communicate by eye blinks, one for yes and two for no, and no one really knew if she understood what was being said.
A lot had changed in 20 years. Did she miss it all, as an unresponsive "vegetable"? After she began to talk, it was clear that she had awareness of her surroundings all the time. When her brother asked her if she knew what a disc was (in 1985 the world still played vinyl records), she said she knew it had something to do with music. Dr. Tabak is convinced that somehow the key to what made Sarah Scantlin talk can be discovered and can help unlock the personal prisons that trap so many PVS patients.
Meanwhile, Marsi Tabak is pushing forward at her own pace. After years of intense physical therapy, she can now stand on her own with a walker, after being helped up to a standing position. The next step, says Yacov, is walking, and after that, he smiles, maybe dancing? "I'm willing to wait another seven years, or as long as it takes. Just watching Marsi struggling with the task of standing is to understand what the will to live really means."
And she made good on her silent promise to her daughter Shani. Last year, both Yacov and Marsi Tabak escorted Shani to the chuppah. Marsi was in a wheelchair with an unfocused expression, yet her heart was with her daughter, as teardrops again rolled down her cheek. This time, they were tears of joy.
Please pray for Marsi's complete recovery. Her Hebrew name is Tova Tikva Machla bas Chaya Bina.