Living With Brain Injury

Living with Brain Injury

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Dennis Benigno Story
The summer of 1984 was coming to an end. Our daughter, Kim, was getting ready to start her second year at Kean College in New Jersey. Our son, Dennis John, was coming of age as a young man with the same dreams and outlook on life typical to other 15 year old teenagers. He was anticipating the start of his first year at the senior high school in Clifton, New Jersey, playing for the school football team and developing friendships with the girls in his class. It was a wonderful summer for both of them. Unfortunately it would be the end of a normal life for all of us. The bright, caring and intelligent young man that was our son would soon be gone. The son that came back to us would be broken in mind and body with a brain so injured that a deafening silence became his way of life.

That morning of August 22, 1984, was like any other. As always I looked in on them before leaving for work. I glanced in their rooms to see if they were awake. They were both asleep so I reached over, kissed them and left for the day. I would see them later. Why wouldn't I? I always did and nothing entered my mind to make me think otherwise. It was the start of a typical day. Dennis was going for a football physical which was necessary before playing. Rosalind, my wife, was going shopping with Kim and would be gone for most of the day.

It was 3:40 pm and I was sitting at my desk when that dreadful call came—the call that parents never expect. These things don't happen to you; they only happen to others. Well, the stark reality is they do happen to you. The police officer on the other end of the phone was telling me Dennis was involved in an automobile accident. It doesn't appear to be serious. He may have a broken leg. In any case they took him to the hospital. Give them a call for more information. At first you really can't comprehend what you are hearing. I'm sure the police officer was making every attempt to make me understand what happened yet in my mind all I heard were garbled, abstract words and sentences. I guess the brain develops a defense mechanism against bad news. In a few minutes that theory would surely be put to the test. I know what the officer was saying but down deep inside I had this terrible feeling that there was more to it.

The initial panic that had subsided for a few short moments was now coming back as I called the hospital. “This is Dennis Benigno. I'm calling about my son Dennis. I understand he was injured in a car accident.” The silence was deafening. I knew right then and there that it was much worse than the officer had told me. A sick feeling started to come over my body. You better get down here right away. My heart was racing, I was sick to my stomach and it was difficult to breathe. My God what is this person telling me? Then the unthinkable happened. I still cannot after all of these years believe that I was capable of saying those terrible, dreadful words, "He's not dead is he? Is he OK?" I couldn't believe I was even thinking those words let a lone mouthing them. It still makes me ill just to think of those first few moments. For the life of me, I can't understand how millions of other families coped with those few words that seem so final in a loved ones life. No parent should have to experience that.

A friend saw how upset I was so he drove me to St. Joseph’s hospital in Paterson. When I arrived at the emergency entrance, a nurse, doctor and Catholic sister met me at the door. Once again I asked if he was OK. Will somebody please tell me what's happening? The doctor told me, “Dennis was struck by a car and suffered a serious head injury. His condition is stable and he is undergoing brain surgery to relive some bleeding.” Brain surgery, severe, life threatening. What's she saying? She can't be talking about my son. Just a few hours ago I left him sleeping in his bed. This can't be. Well it was. The panic, sick feeling and emotional distress were all rolled into one and I was without my family. I immediately thought of my wife. This will destroy her. Her son was terribly injured and she didn't even know it. How would Kim react? She was and still is very close to her brother. I finally was able to contact Rosalind through our next door neighbor.

When she and Kim arrived, we hugged each other but the terrible shock overshadowed any attempts at consoling one another. The doctors and I began to tell them what had happened. I can't begin to describe the emotional roller coaster a family goes through at a time like that. I still cannot find the right words to describe that moment when a parent is confronted with his or her child's mortality and they are helpless to make it better. It was totally surreal—like walking in a fog or underwater. Nothing seemed to make sense. The grief, confusion and inability to absorb what had and was happening became more and more difficult to cope with. Friends, family, doctors, nurses all try to comfort you, but at that moment in time there is no comfort. It doesn't exist. When we finally saw him for the first time since the accident, we broke down uncontrollably. It was just too much to bear. Our beautiful son who only a few hours earlier was a healthy and happy young boy with his future ahead of him was now fighting to stay alive.

The doctors kept telling us that the first 72 hours were the most critical. If he were still alive after that time frame, he had a chance. Well he survived the first 72 hours, but the battle was just beginning. For seven months he fought a life and death struggle at times coming very close to the end. When it came time to leave the hospital, people told us to send him to a long term rehab hospital for physical therapy or take him home and maintain him until he dies. One person suggested we institutionalize him and treat it as a missing person. They said it was the best way for us to get on with our lives. These suggestions were not even considered. Dennis was and still is a main focus in our lives. He wasn't going anywhere but home where he would receive the loving care that only parents can give. We were determined to make his life the best that it could be. We did try a 2-month stay in one of the new head injury rehab centers that were opening in the country. That turned out to be horror story. After months of weaning Dennis off of tubes, getting him to swallow foods and drink from a cup, he regressed and lost everything that we had achieved.

Nine months after the accident he finally came home where he has been ever since. Unfortunately that feeling of total helplessness to make your child well again continues to this day. Dennis survived the accident, but the injury was so severe it left him totally unable to walk, talk or communicate in any meaningful way. We have not deterred from our goal to make his life the best that it could be. From day one, our hope has been that he will someday regain what was lost. To that end, we maintain his health but not as a means to wait for an end to life as suggested, but rather to be physically ready to accept a cure when it is finally developed.

At the beginning, it is the blind hope of parents more than anything based realty or science. Relentlessly we cared for him providing for his most basic, medical and rehabilitative needs. We started a partnering program which comprised of five teams of five people on each team. The teams would come to the house at various times throughout the day moving his arms, legs and head in a crawling motion. His movements progressed to the point of crawling and even attempting a walking motion while being held in a standing position. Unfortunately because of so much activity and exercise, he was became irritable which caused a slow down in the process. In addition to the physical exercise program, we initiated various cognitive programs to help stimulate the brain.

The first time I read about nerve growth regeneration was in 1991. Dr. Solomon Snyder was experimenting with nerve growth drugs at Johns Hopkins University in Baltimore. He was researching ways to stimulate the growth of new or damaged nerves in various parts of the body. I was astounded. I had never heard of anything like this before. Someone was actually trying to regenerate nerves. What type of science was this? Was it possible that the nervous system could be repaired? If that was true, then why not the brain? To say the least it obviously caught my interest. I began to search for similar articles and soon realized nerve regeneration was being contemplated at a few other research institutions. Gene therapies were also being considered as a method to repair various disorders of the nervous system for Alzheimer's, Parkinson's, Multiple Sclerosis and more. I also began to notice that brain injuries were never mentioned. That was unbelievable to me. As I educated myself about the magnitude of brain injuries, it became apparent how widespread and devastating this injury was not only to the victim but to the families as well yet it was never mentioned especially in terms of a cure.

Then two unrelated events occurred that forever changed my focus and galvanized my efforts toward finding a cure. Christopher Reeve sustained a spinal cord injury in 1995 and the discovery of stem cells in 1998. Christopher Reeve's accident highlighted the need to develop a spinal cord injury cure. That only reinforced my conviction and determination that if spinal cord could be treated as a curable disorder, then brain injury should receive the same effort. His celebrity raised the issue to the public’s awareness. While brain injury and spinal injury are different, both are part of the central nervous system; therefore, brain injury was occasionally given some much needed publicity. Brain injury was still way off of the radar screen, but at least it was being mentioned. The discovery of stem cells and the potential they offer for curing a variety of disorders has revolutionized the medical research process. Once again Parkinson's, Alzheimer's, ALS, MS, and spinal injury, to name a few, continued to be the main focus. With the exception of a few neuroscientists, brain injury was still not receiving any meaningful attention.

We decided to change that and fill a void that no one seemed interesting in addressing. Up until that time, no brain injury advocacy group even mentioned brain injury and cure in the same breath. It was unheard of. Once again simple reasoning determined that if a cure could be found for spinal injury and other debilitating disorders, why not brain injury? To achieve the goal of a brain injury cure, we formed the Coalition for Brain Injury Research (CBIR) in 1996. The mission of the Coalition is to raise awareness and funding to support the search for a cure. I began reading about legislative efforts in Florida and Virginia that used the motor vehicle violations system as a means of raising funds to support research programs that would seek a spinal/brain injury cure. The basic idea was to add a surcharge to a motor vehicle violation ticket or to the license or registration renewal fees required when either document is lost due to reckless driving or DUI. It was a common sense way to raise funds due to the fact that the vast majority of brain injuries are caused by car accidents.

With neuroscience advances becoming more frequent we took action. In 1998 I approached my local assemblyman and state senator asking if they would propose and support a brain injury research act for NJ. A $5.00 reinstatement fee would be imposed on all registration renewal fees suspended due to reckless or drunken driving. After two years of hard work, a successful bill was presented to Governor Whitman. Unbelievably and without warning the legislation received a pocket veto. The Governor mistakenly reasoned that it was a duplication of effort with a recently signed spinal cord research bill. I believe she did not fully understand that the characteristics of brain and spinal injury and the problems they impose on the CNS are vastly different at every level creating the need for two very specific research agendas. A cure for one does not mean a cure for the other. They both require separate and distinct research efforts. After that devastating defeat a new bill was reintroduced in the 2000 legislative session, but time constraints eliminated any possibility of passage. The only change to the bill was the funding mechanism. A $1.00 surcharge fee on all motor vehicle traffic violations issued statewide replaced the previous method of funding.

The year 2002 brought a new Governor who enthusiastically supported a commitment to move forward on these types of issues. The legislation was once again introduced. After intense follow up and lobbying for passage, the bill was approved and sent to Governor McGreevey's desk for his signature. As an added gesture of showing his support for this bill, he graciously decided to sign it at our home on January 2, 2004, in the presence of our son Dennis John. The emotional impact was overwhelming to all of us. Dennis was the inspiration and incentive for this historic achievement. It was such an unbelievably proud and wonderful moment. New Jersey became the first state in the union to provide a continuous funding source dedicated to support the search for a brain injury cure. For the first time in 20 years, the opportunity to lead meaningful, productive lives was now a realistic goal for our son and others in similar situations. When the Governor signed that bill in front of my son, it was a new beginning. The devotion of our whole family to our son’s care and the search for a cure was constant and unwavering for all these years. Now the hard work really begins. These funds will be used to expedite the development of treatments and cures to the clinical stages where they will do the most good.

The CBIR is also active at the federal level. In 2001 the Congressional Brain Injury Task Force was established in Congress. Its purpose is to educate Congressmen and Senators on all aspects of brain injury, the devastation it causes, and the need for federal funding to support basic science research that will lead to a cure. Annual events are held in Washington DC that highlights these issues. We are also active at the grassroots level holding fund raising and awareness events. Donations from these events are granted to research institutions across the country. Current research collaborations are with the UMDNJ, the University of Texas Medical School and the Burnham Research Institute in California. These and other programs currently under review are seeking to develop methods of brain cell regeneration as a means to repair the injured brain.

The individuals and families who live with the tragic effects of this injury on a daily basis deserve nothing less than our total commitment to succeed in achieving this goal. Hopefully the legacy of our family’s advocacy will be the elimination of the heartbreak caused by traumatic brain injury and the positive effect it will have on so many that have suffered for so long.