Joanna Leigh describes her life in black and white, before and after. Before the Boston Marathon bombing, she says, she had “just embarked on a really beautiful future” with a new doctoral degree in international development and a career as a consultant.
Today, she says, she can’t work or drive and often gets lost, sometimes on her own block. Her vision is blurry, her hearing is diminished and her ears ring constantly. She struggles to cook dinner, do her laundry, fill out a form. Mostly, she sleeps.
The cause of her difficulties, according to the physician who examined her, was a traumatic brain injury on April 15.
But because Leigh, 39, walked home that day after she was knocked unconscious by the second bomb and never went to a hospital, she received just $8,000 from the One Fund charity for survivors. She said her medical and other expenses have reached $70,000. She is applying for disability payments and food stamps.
One Fund payouts to everyone except 16 amputees and the families of the four people who were killed were based on the number of nights spent in the hospital. A single night was worth $125,000; 32 nights qualified victims for $948,000. The 143 people who were treated as outpatients received $8,000 each.
In coming days, Leigh and four other attack survivors will petition the One Fund to develop a new plan for distributing the millions of dollars in donations the charity has received since the first payout. They are seeking a formula that takes into account injuries that were slow to reveal themselves.
“Rough justice” is what lawyer Kenneth Feinberg has called the system he devised to distribute nearly $61 million, and some have complained about it. J.P. and Paul Norden, brothers from Stoneham, Mass., who lost their right legs in the attack, told The Washington Post last month that their $1.2 million payouts, while generous, will fall short of covering their needs because of the high cost of prostheses and other medical care. They think amputees should receive more.
The four other people on the petition besides Leigh have long-term problems with their hearing, said Jeff Stern, Leigh’s attorney. One, Scott Weisberg, a physician in Birmingham, Ala., and one of the few runners injured, said in a brief interview that he has been forced to cut back his hours and is concerned about his ability to do his job. The three others have not been publicly identified.
Camille Biros, Feinberg’s deputy, said the plan always anticipated the possibility of additional payments if money is available and they are deemed warranted.
“She is taking the right steps. She is going back to the One Fund . . . and now the board of directors can make another determination,” Biros said.
Mike Sheehan, the One Fund’s treasurer, said the charity will speak with all survivors before deciding how to spend the more than $10 million contributed since the initial payout.
“We have to be careful. We have to be thorough. And we’ll try as best we can to be fair,” he said.
Symptoms of traumatic brain injury can take time to emerge.
Inflammation of brain tissue can progress and the damage to delicate neural pathways may not be evident immediately, said Erin Bigler, a professor of neuroscience at Brigham Young University in Utah. When there are no visible signs of trauma, laymen can have difficulty understanding why some people suffer disabling problems, he said.
But even with increasingly sophisticated tests, the diagnosis is still controversial.
“Since the majority who sustain a concussion spontaneously improve and return to baseline-level function, some believe that concussion is benign, and if symptoms persist, it reflects a psychiatric manifestation,” he said. Bigler said cognitive and emotional problems can persist after concussions.
Douglas Sheff, president of the Massachusetts Bar Association and a personal-injury lawyer who volunteered to help bombing victims, said the “One Fund is doing the same thing that, frankly, insurance companies and, frankly, doctors are still doing to this day” — not treating brain injuries seriously because they sometimes have no obvious physical symptoms.
Leigh, who was at the marathon to watch a friend run, was perhaps 10 feet from the second bomb when it detonated, trapped in a thick crowd that may have shielded her from the shrapnel that tore into so many around her. She had been making her way toward the first explosion hoping to help. She knows CPR and has had disaster response training.
She said she awoke against a barricade. Debris was fluttering in the air and blood and flesh were everywhere, she said.
“It’s just heat and it’s little pin dots,” she said. “I don’t feel my feet and I don’t feel myself going through the air. And I wake up and I’m up against the railing, sitting against the railing, and people were trampling my feet.”
An older man, covered in blood, his arm flayed open, staggered toward her. She helped him around a corner, where she thought he’d be safer. Two men brought over another victim.
“His foot and ankle were all bloody. The top half of his foot came off in my hand. It was in his sneaker. . . . I vaccinate babies in East Africa. This was not what I was prepared for,” Leigh said. She helped the two injured men into ambulances.
Leigh said she tried to find her way home in Boston’s Jamaica Plain section, more than three miles away. Trains were shut down and cabs were not allowed near the bombing site, so eventually, she said, she walked. She remembers very little of the trip.
With a doctor’s appointment scheduled for two days later, Leigh decided not to go to a hospital. She spent the first night agitated and the next day dizzy and vomiting when she wasn’t asleep, typical signs of a concussion. But a bomb scare canceled her appointment and the lockdown and manhunt for the suspects on April 19 canceled another. She wasn’t examined until April 24, nine days after the bombing.
Since then, she has seen a neurologist, an eye doctor, a hearing specialist, a psychotherapist and a dermatologist for damage to her skin. She has had increasingly sophisticated tests on her brain. She takes a variety of medications to treat headaches and prevent seizures.
“The majority of this patient’s severe cognitive, somatic, mood and sleep symptoms that have completely disrupted her life are due to her post-concussion syndrome,” Robert Cantu, Leigh’s doctor and a national expert on the subject, wrote after he evaluated her. “As a result of these symptoms Dr. Leigh is currently and for the foreseeable future disabled from the kind of complex consulting work she has done before the bomb blast injury was sustained.” Leigh also has post-traumatic stress disorder, Cantu wrote.
Leigh’s health insurance has paid about $40,000 of her $70,000 in bills, the One Fund gave her $8,000 and a state victims’ fund has contributed $5,000. She is down to $1,200, living on credit cards and money from selling her possessions, she said. She is filing for monthly Social Security disability payments of $473 and $30.40 in food stamps — far less than the $2,300 she owes just for rent and student loans each month, she said.
“My brain isn’t prepared to handle a lot of tasks anymore,” Leigh said.“If I try to do a lot of things, it has, like, meltdowns.
“I have no money. I have nobody to help me do things. I’m always worried about bills.”
Leigh has been rebuffed twice by the One Fund, the first time when she met with Feinberg before the money was distributed and later by another official after the payments were made. Stern, her attorney, is among those who have asked Massachusetts Attorney General Martha Coakley to intervene, and he has stepped up his efforts to get her more money.
“Donors to the One Fund, to my knowledge, never intended to have their contributions limited in such a way as to leave victims like my client so severely undercompensated,” he wrote to the charity July 17.
Leigh said she will soon give up her health insurance and go on the state program for the poor, which may sharply reduce available treatment.
“I don’t ever regret running to help people,” she said, adding, “I’m really saddened that my society hasn’t rallied to help me.”