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04 July 2016

A STORY OF CTE




My father, Michael John Bonagura, a former United States Marine Raider, fought in three major battles in the Pacific during World War II, eventually succumbing to malaria and the lingering effects of a severe concussion incurred while being transported in an ambulance on Guadalcanal—according to his service records, the vehicle crashed leaving him unconscious about seventy-two hours. While later hospitalized a second time before his eventual discharge in 1945, he complained of “headaches, fatigue, anorexia, insomnia and blurring of vision.” Before the Marine Corps, he boxed and played football, and as also noted in his medical records “was knocked unconscious several times and received many head blows.”
I imagine what we understand as PTSD and the more obvious symptoms of malaria, such as episodes of extreme fever and chills, followed by profuse sweating, must have been all too apparent to his loved ones upon his return home, but he had a much more devastating injury, now referred to as Traumatic Brain Injury or TBI; as he aged, further complications arose, perhaps best understood as an advanced stage of this initial brain trauma—worsening with time now known as a neurodegenerative disease called Chronic Traumatic Encephalopathy or CTE.
My mother and father were married forty-seven years, and after he passed away in 1993 from other service-connected disabilities, my mother, Gertrude, was shocked when his teacher’s pension checks suddenly stopped.  He had taught high school History in NJ public schools since the early 60s, and in the event of his death, she fully expected to receive survivor benefits for the rest of her life, just as they had discussed many times. Unknown to her, mistakes were processed on a retirement application she knew nothing about—stipulating no survivor benefits.
In fact, my mother only knew about two retirement application, one filled out in December 1976 when she accompanied my father to Trenton, NJ to make sure it was properly completed and submitted ahead of his June 1977 retirement. After a long drive and even longer day dealing with the paper work and administrative procedures, my father’s stress levels rose to the point where he told my mother he needed to go—now. Interestingly the date was December 7—no small anniversary for a veteran of the pacific war. Days like December 7 and August 7 (the day the Marines landed on Guadalcanal) were rather important in our household and certain to ramp up my dad’s stress levels.  In the end, the application they came to submit that day was rejected for a cross-out regarding the dates his retirement was supposed to begin, and they left the offices, taking home another application they would complete, notarize and mail in the next day. Yet that second application was also returned to my father; this time because questions were left blank. A clerk in the offices in Trenton must have copied most of his answers from the second application and typed up a third application, indicating the question remaining to be answered with check marks, including the fateful one regarding survivor benefits. Why the clerk hadn’t simply copied all his answers, especially the one electing for survivor benefits, clearly indicated by my father in the first two applications, we will never know. The third and final application was processed despite many other obvious errors like an incorrect Social Security number. My mother never even knew there was a third application. And on that third application, dad mysteriously “changed” his prior designation on the first two applications regarding survivor benefits—in one brief moment making a life-altering and completely contradictory decision that can only be understood as a terrible mistake.
Shortly after my father’s death, my mother began her struggle for justice with the NJ Division of Pensions. She is still seeking to have the mistake corrected and her benefits restored, but it wasn’t until 2012 when she became aware of Chronic Traumatic Encephalopathy after watching a PBS special featuring Dr. Ann McKee of Boston University and The VA Boston Healthcare System.
Dr. McKee and her team of researchers, internationally-recognized experts in the field of latent brain trauma, looked into my father’s medical records and concluded he was indeed suffering from the long term effects of CTE, and although my mother had hearings with an administrative law judge in 2002 and 2004 to address her case, little was known about CTE at the time and no specific medical evidence was presented to the judge who concluded, again without any scientific evidence or documentation, my father was mentally competent at the time he submitted his retirement applications, and I presume the mistake was actually just a changed mind. During the hearing my mother tried desperately to help the judge understand that this apparent reversal of my father’s intentions made no sense and even his close friends testified that Michael had always made his wishes for survivor benefits very clear.  There had to be something terribly wrong with his cognitive state at the time, his selection of no survivor benefits completely contrary to two previous applications.
The question on the last application was generally confusing without the added burden of a brain disease, only asking “do you wish to receive the maximum allowance without option”. Interestingly, he selected that option even though he listed my mother’s name as “beneficiary” just below that line. In later years that question was changed (simplified) to “indicate your choice of payment” and then the applicant was asked to select an option; since the 70s, legislation referred to as “Spousal Consent” laws were enacted in many states including NJ requiring spouses to notify each other if they opt out of survivor benefits.
In a 2012 letter to the NJ Division of Pensions, Dr. McKee provided her understanding of the apparent contradictions and errors, saying CTE could “easily explain any mistakes he made when filling out the forms” and “it would be expected that his mental condition would produce such errors.” She continued, “it is my opinion that Mr. Bonagura was suffering from severe posttraumatic neurodegeneration at the time of his retirement in 1976.” So severe that he didn’t even notice an incorrect Social Security number. But to this day, the NJ Division of Pensions ignores any new evidence while even going so far as to refuse to accept any future correspondence from my mother saying the case was settled in 2004 with the Administrative Law Judge’s decision.
A final irony involves an available option to remedy the injustice: there is a law in NJ (known in legal terms as Skulski v. Nolan) which allows for reconsideration of cases like this one when new evidence is discovered—if the wronged party has demonstrated due diligence in trying to rectify the problem. Most people, I think, would agree twenty-three years of countless letters, phone calls and requests for reconsideration demonstrate due diligence.
The Department of Defense estimates over 344,000 cases of TBI in active and reserve US forces since 2000. I could not find statistics for retired military. At least twenty veterans complete suicide every day, and some experts estimate the number to be much higher. In studies of NFL players who died by suicide, evidence of CTE is frequently confirmed with autopsy reports, and anecdotal evidence seems always to center around sudden changes of mood or behavior and impulsive decisions, often completely out of character. TBI does not necessarily develop into CTE, though scientists are clear pathways exist; again, CTE is a degenerative disease that takes many years to manifest after the original injuries.
To provide the help our servicemen and women have earned with their sacrifice, we need to bring greater awareness, research and treatment to the invisible scourges of TBI and CTE.  We must educate those in positions of power—the decision makers—about the far-reaching and often mysterious effects of these diseases. Beyond education, inspiring compassion among these power brokers is another battle entirely.
I wonder if through efficacious medical intervention how many cases of CTE might be prevented from developing if we only had a protocol for those affected by severe or frequent head injuries and some way to get treatment to those most in need. I think we're still in the infancy of this science and public understanding is also in need of much enlightenment. I remember a few years back during the trial surrounding the murder of Chris Kyle, also known as the "American Sniper". Kyle was shot to death by Eddie Ray Routh. I wished I could have spoken to Routh's lawyers because I certainly would have looked into his medical records regarding the possibilities of head injuries and how that pathology might have affected his psychological state. As I understood it, the focus during the trial was more on Routh's psychiatric symptoms, those more presentable and understandable, what we call PTSD, anxiety, etc., but I believe the focus needs to be more on the brain injuries and how they may very well cause so many other symptoms. So often these injuries remain invisible and the veterans and their families left to pick up the pieces after some unimaginable tragedy.  
I've always thought that the emphasis on so-called  PTSD is greatly overplayed while the actual neurological science of brain injury is not understood or completely ignored; like if someone presented symptoms of clinical depression, little attempt would ever be made to address reasons for the depression other than a "brain chemical imbalance" that we might attempt to correct by drugs without any deeper understanding of the myriad factors that might cause depression.
My mother urged me to share her story so other veterans and their families might be made more aware of the potential long-term and often completely unforeseen and unpredictable effects of brain injuries—these so-called invisible disabilities have very tangible consequences for spouses and families. The most difficult realization of my life is seeing her continue to reach out to politicians and bureaucrats in Trenton as they continue to ignore her efforts to make them understand the implications of my father’s illness. That she still carries this burden and still suffers the consequences so many years after my father’s death is unthinkable to me.



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