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Keeping On
September 3, 2010  |  by Deborah Rudacille

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“I truly believe that all the patients we take care of should have some improvement in their quality of life, or why did we bother being part of the process?” she says. “I question everything. I am not satisfied with mediocrity. I do not do well with being told, ‘That’s the way we’ve always done it.’ That is like a red flare in front of my face.”

Ferrigno is frustrated by what she sees as society’s preference for ignoring the obvious fact that we are all going to die, some sooner than others. “People are living and dying every day,” she points out. “But we don’t talk about death. It’s as if, if we don’t talk about it, it won’t happen.” Health care providers “teach people to walk again, we teach people to use insulin, we talk about bad experiences they go through. Why is it that we can’t talk about death?”

She firmly believes that individuals and families have the right to “make memories” when death is imminent. “That memory may be putting lotion on your hands and giving somebody a massage when they are dying. It might be reading a favorite story. It might be recording your voice for your 2-year-old child who is never going to know what your voice sounded like, to say, ‘You are 2 years old and you did this today and I absolutely adore you. I won’t be there for you but this is my hope for you.’”

Admitting that not all dying persons or their families are up to the task, she nonetheless believes that health care providers should give them the opportunity to do so by being purposeful and raising the issue themselves, saying, in effect, “Your disease is here and we’ve been treating it. This is the general trajectory. You might want to start doing these things.” Ferrigno has practiced what she preaches. “Last year my father was dying and my heart was crumbling. Being in the field does not make you immune to such grief,” she says. “I held him as he took his final breaths.”

Another way in which people like Murray, Ferrigno, and Jeffrey Rothstein handle stress is by keeping themselves open to the good in people, which can manifest itself in the worst of circumstances. Rothstein is director of Hopkins’ Robert Packard Center for ALS Research. Delivering the diagnosis of what colloquially is known as Lou Gehrig’s disease is never easy—“I don’t know how to be comfortable in that situation,” he admits—but he describes working with patients and families he admires as one of the most fulfilling aspects of his work. Sometimes, he finds himself exhilarated by the ways that spouses and children come together to support a stricken family member. Even in that traumatic first visit, when he delivers the diagnosis, he knows, he says, which families are going to rise to the challenges they will face and which will not. “Once you’ve been doing this for a while, you pick up all these nuances watching people when they come in. Beyond the medical, it’s how they interact, how they communicate with each other.”

He is particularly moved by older couples. “I remember this one couple that was just fantastic. He was an absolutely doting husband, in a good way. Kind, caring, quiet, a strong person. The hard part of that particular case was that he developed his own medical problems, severe cardiac dysfunction, and he did not take care of himself. He wouldn’t. All he cared about was taking care of his wife. That sticks in my mind. How much he threw away of himself to take care of her. People are phenomenal in that way.”

On the flip side, he sees dysfunctional families. “I think of one fellow that came in and basically no one cared about Dad, and it was a mess. Children, wife. It was a disaster.” Then there are the poignant cases in which the ALS patient has no one. “I had a thirtyish young guy who came in with his girlfriend, a relatively new girlfriend. His mother and father had already died and he was an only child. He’s going to die of this disease and he has no one to support him because the girlfriend was going to leave him, of course.” The young man eventually moved into a nursing home, where he was surrounded by elderly strangers. “That’s sad. That sticks in my mind as being a horrible situation,” Rothstein says. “You are alone. You can’t relate to the people around you. You have no one there for support.”

Rothstein says that his research, with its potential to understand the causes and provide treatments for ALS, provides a critical counterbalance to his sometimes emotionally grueling work as a clinician. Like Murray, he sustains himself in part by knowing he can help. “That’s what keeps me going. That’s what provides the backbone for me, the ability to come back and offset something that is essentially a hopeless condition.” In addition to his lab work, Rothstein funds the best researchers in the field through the Packard Center. “I’ve raised $60 million for research,” he says. “We bring together 30 researchers worldwide every month. We demand that they work aggressively on ALS. If they don’t, we take the money back.” Last year, Packard Center investigator Jonathan Glass was approved to run the first FDA-approved trial of stem cells for ALS. Half of the new ALS drugs currently in the pipeline have been developed by Packard Center researchers. In that first difficult session when he must deliver the diagnosis, he can be positive, Rothstein says, by not just delivering the diagnosis but also presenting options like new drugs, new treatments. “It’s the science that allows me to say, ‘Yes, you have ALS and here’s what I have to offer you.’ So my conversation with them is, ‘Here’s what we’re going to try to do for you.’ And patients will more often than not walk away with ‘Gee, there is some hope.’ I like that.”

Few strangers would guess that the vivacious Murray, who bears a startling resemblance to the actress Cameron Diaz, spends her days listening to stories that would depress the most hardened cynic. As a clinical psychologist, she is fortunate, she says, in having learned to deal with the potential for vicarious traumatization and self-care strategies as part of her training, something that is not always true of nurses, doctors, and other health care providers. “I think that’s a real advantage versus a lot of other professions. Because we deal by nature with tough situations and depressed clients, part of our training is how you handle that effectively and not take it home so that it doesn’t affect other parts of your life.”

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