It seems today that everyone is familiar with the term TBI, or traumatic brain injury. Mass media has informed us that TBI is the signature injury of the conflicts in Iraq and Afghanistan, causing physical, emotional and thinking problems in our men and women who served our nation with bravery and honor. We are also becoming increasingly aware that repeated concussions (a “mild” form of TBI) sustained by athletes involved in contact sports can cause long-term cognitive and physical problems once thought limited only to boxers who were described as “punch drunk”, and now becoming more recognized as a slowly degenerative disease referred to as Chronic Traumatic Encephalopathy. In 1992, when I completed my medical training in Physical Medicine and Rehabilitation, a specialty devoted to treating people with physical, cognitive and emotional problems arising from illness or trauma, TBI was an unrecognized and thoroughly misunderstood three letter acronym that held little meaning. The exception of course back then was to those who sustained brain trauma and their loved ones, who out of necessity learned that TBI, which takes only a moment to occur, represents the beginning of a new life. While for some, the new life is tragically short, for others it can mean the onset of a lifetime of disability and numerous challenges affecting physical and cognitive skills while simultaneously ravaging abilities to regulate emotions, with multiple possible trajectories. Ruby’s story represents the trajectory we like to see.
Consequences of TBI are very varied, impacting not only the strength and coordination of arms and legs, but how a person thinks, remembers, solves problems, processes information, pays attention, concentrates, and organizes their day and how they control their emotions. In fact, it is often the cognitive and emotional effects of TBI that are the most challenging to treat and that negatively impact how people with TBI successfully reintegrate back into the life they once knew. Physical Medicine and Rehabilitation is a field of medicine that helps this process once our other medical colleagues have done the important job of saving lives immediately after the trauma occurs. Through rigorous rehabilitation typically lasting months to years and involving many health care professionals in physical therapy, occupational therapy, speech therapy, psychology and social services, people with TBI regain, in varying degree their ability to live as independently as possible. But just as the initial consequences of TBI vary from person to person, ultimate outcomes widely differ from person to person.
What then is the magic formula that accounts for the outcomes we all desire: returning a person with TBI to independent living? In truth, I don’t know all the factors that drive some to do very well while others do not. But as you read Wendy Gaynor’s account of Ruby’s recovery, several factors will emerge that undoubtedly played critical roles in what is a remarkable outcome. First, as with any injury or illness, who you were before including your determination and resilience, and certainly something less tangible that in part defined you as a person, plays an important role in how you will respond to a severe and life altering injury. Second is access to proper medical and rehabilitative care, both acutely after injury and over the full course of recovery that is often provided over a period of months to years, not just days or weeks. It is an unfortunate scenario that even today this is not universally available to everyone. Third, but certainly not last in what could be an exhaustive list, is the tireless devotion of loved ones. What was abundantly obvious to me when I assumed Ruby’s medical care, and what will also be clear as you read her story, is that she is blessed by a family who were by her side throughout her recovery, providing her with strength that no health care provider could ever deliver. It is that unyielding commitment that made the difference when I first Ruby, her mother Wendy, her sister Violet and the rest of her family, and continues to make the difference today.
I have watched Ruby grow and mature over time, beginning with the severely injured adolescent patient I first met in a rehabilitation unit many years ago, who quickly awoke but remained disoriented and unaware of the events that nearly took her life or even the day to day events unfolding right before her. I followed her after she emerged from her confused state to be discharged from the protective walls of the hospital and back to the care of her family, when she embarked on an even longer course of outpatient rehabilitation that lasted years. And while I always hope that the best outcomes will be achieved by all my patients, and can honestly say that many have done exceptionally well, it has been my unique blessing to see Ruby graduate from an Ivy League university, attend her wedding in Central Park and every December to receive a personalized holiday card featuring her two beautiful children. As a physician, there is no better reward. I still see her in my office for periodic checkups and wonder how she will undoubtedly amaze me in the future.
Dr. Steven Flanagan, April 2013
Howard A Rusk Professor and Chair of Rehabilitation Medicine, New York University School of Medicine
Medical Director Rusk Institute of Rehabilitation Medicine, NYU-Langone Medical Center
It is a Thursday evening in early October. The year is 1995. The weather is dreadful—the rain torrential, the winds fierce, the trees swaying, the leaves furiously whirling, not a night to be out, definitely not a night to be on the road. My daughter, Violet is sleeping at a friend's in Rockland County. My older daughter, Ruby, I believe, is on her way home from an appointment in Westchester. I am alone in my apartment in Manhattan. I am on the downstairs phone talking with Violet. At around seven o'clock, the girls' telephone number rings upstairs. I let the answering machine pick up. I hear a male voice, I vaguely hear "police," I vaguely hear "your daughter." The first thought I have is "wow, the Orangeburg School District plays rough." We had moved to Manhattan a few months before and Violet, against school policy, was continuing to attend Tappan Zee High School in South Orangeburg, New York. I'd had some rumblings that the school was getting wind of a traitor in their midst, which is why Violet was staying at her friend, Lily's that night. Since by nature I'm a procrastinator and if truth be told, a proud and proficient procrastinator at that, I almost don't answer the phone figuring I'll just deal with it tomorrow, but the grown-up side of me prevails and I do. What I hear takes my breath away. It is a policeman on the line, whose name, if ever I knew it, has long since been forgotten. My heart starts to race, I mean, policemen never call you at home at night with good news. He informs me, in the most serious tone imaginable, that my daughter, Ruby, has been in a very serious car accident earlier in the day. I ask, "Is she alive?" and he repeats the same terrifying words uttered in the same dire tone of voice, a there-will-be-no-happy-ending tone of voice, "your daughter, Ruby has been in a very serious car accident," and I just know that since he wouldn't tell me if she is alive, that she must be dead. I start to panic, I start to hyperventilate. The policeman tells me to get a paper bag and breathe into it, and I tell him that he has no idea how disorganized my drawers and closets are and that in searching for a paper bag I'd be just as likely to find the decorated match box I made for my mother in kindergarten, hid and hadn't seen since. He gives me the name, address and phone number of the hospital in Westchester, and I make a conscious decision not to call (that gift of procrastination, remember) because it would take too much time and effort to dial the phone, speak to a stranger, try to sound normal, and probably, even likely, find out the unfathomable and unacceptable! I called Violet back but I don't remember making the call or what I said. I've since learned that I was hysterical. I'm told I called my sister-in-law Helene who lived in Scarsdale and, thus, was closer to Ruby, could get to her bedside faster than I could, but I have no recollection of that call either.
I don't remember who else I spoke with other than my boyfriend's daughter, Sarah who at the time was working for me in my bakery. My thinking was reduced to its most basic level—a+b=c—I had just dropped her off at her apartment so I knew she was home and knew she would be available to drive with me to the hospital. On that sixty-minute drive, the longest sixty minutes of my life, as I sat in the passenger seat while Sarah drove, I stared straight ahead, seeing nothing, trying and failing to contain my mounting hysteria. I understood for the first time in my life what all the love songs and poetry meant when they spoke of a broken heart. I was in excruciating pain, it literally felt as though my heart was breaking and I had grave doubts about whether I would survive. Halfway through our drive, I got a call from Ruby's doctor, Beth Raines. Beth had also gotten a call from the police and was on her way to the hospital as well. Since she lived in Westchester and was closer to the hospital, she said she'd call me back when she got there. She called back and uttered only two words, "she's here" (long pause), "she's here," and I took what felt like my first deep breath since the nightmare began. I knew Ruby was alive, knew I was just minutes away from her and naively believed that the worst was over. I would be right and I would be wrong.
Before the car came to a full stop, I leapt out, barged through the emergency room doors, screamed for directions to the ICU and raced towards Ruby. Beth and my sister-in-law Helene were there. Before I could even see Ruby, a neurosurgeon approached me and asked me to okay the insertion of a probe into Ruby's skull to monitor the intracranial pressure on her brain. What he really meant was could he drill a hole into my daughter's skull. "I truly expected to go my entire life without anyone ever asking me that question," I replied to no one in particular. I looked to Beth for help. "Sign, it's the right thing to do" was her reply and I did. The side of her head had to be shaved, a tuft of her luxurious dark curls gone in an instant. She was connected to what looked like a million tubes—she was on a respirator, in a coma, the only sound the beeping of the monitors. She was silent (unusual for Ruby, she has been talking ever since she learned how), she appeared to be resting, she looked fine, a little cut by her ear and one by her knee, but, all in all, she looked okay. I stood by Ruby's bedside, touched her face, held her limp hand, and made a vow to her that I would make it up to her for all the hours she lay alone in the emergency room, an unidentified Jane Doe, nobody's child, and that whatever it took, for however long it took, she would not die on my watch.