Marilyn Spivack Talks about Brain Injury: The Beginning of a Family Journey

Marilyn Spivack is Neurotrauma Outreach Coordinator at Spaulding Rehabilitation Hospital and Co-founder of the Brain Injury Association of America. This story is adapted from remarks delivered to the CIMIT Brain Injury Symposium on November 15, 2007, which as noted by Marilyn Spivack in her keynote speech, was the "first symposium focused on Traumatic Brain Injury (TBI) in Boston sponsored by such a unique collaborative group, representing the private sector in research, medicine, and rehabilitation; biotechnology and the Department of Defense."

I am the mother of Deborah, my adult daughter who sustained a severe traumatic brain injury in a car accident in 1975, when she was just 15 years old. She is the reason that I became the founder of the Brain Injury Association of America with help from my husband. Deborah’s life was saved at the Massachusetts General Hospital through the expertise of Dr. Paul Chapman -- his skills saved my daughter, his compassion saved my sanity.

They say that timing is everything and so it was in 1975 when the MGH had just installed its first CT scanner and had just begun to use intracranial pressure monitors. Debby arrived at the hospital in a coma and she was in that coma for almost 5 months.

It is important to appreciate that in the 1970s, coma was described to families in color codes -- as degrees of black to gray and dark to light! Treatment of severe TBI and care and rehabilitation of patients suffering head trauma were at best minimal. Only 3% of those with severe brain injury survived. Once patients survived the most life-threatening stages of severe TBI, they were allowed hospital time for whatever interventions were available. Being in a state-of-the-art Trauma Center provided the life saving edge my daughter needed.

Hope was our fuel

The hospital was beginning to use intra-ventricular catheters to monitor intracranial pressure. These new diagnostic technologies made a life saving difference. At that time the prognosis was terribly bleak and it appeared that Debby would remain in a vegetative state. Hope is the fuel that keeps one moving forward. With our endless reservoir of hope, and faith in our doctors, we refused to give up on Debby. As with all devoted families who receive a similar prognosis, we refused to listen! That should send a message to those who communicate to families at this catastrophic time. Hope and denial gets us through the worst of times. Reality is the dread and bone chilling fear. We need to hold out for HOPE and the promise of a recovery with acceptance of the outcome at a later time. Now, 32 years later, I am still optimistic that for other people injured today and tomorrow new treatments and discoveries will mitigate severe disabilities and my daughter’s wish will become possible -- “a new brain and a new body.”

Quality of life and caring families

The long process of recovery of function often seems like an endless journey -- a lifetime of work and effort, taking commitment and resources. TBI is disease causative over time and that too is not well understood by those who need to know how to cope. And we must acknowledge that there are many people who had been given the gloomiest of prognoses and yet, with time and good rehabilitation, and access to resources -- they are doing well. Some individuals return to work and to school. Some enter into significant relationships, marry and raise families. However, too many are not able to return to their homes and communities because the continuum of care and resources do not exist for them.

Debby is 48 today and lives in her own home, which she shares with two other young women and a 24/7 staff managed and run by the Mentor Organization. She travels. She has a very busy life. But she is quick to say, “Brain injury is a b…. but my life is OK.” However she has had a second injury and aging is not sitting well with such a disability. She uses a power and manual chair. But she has severe epilepsy, had a vagus nerve stimulator implanted, and is under constant surveillance and care of many fine physicians including Dr. Steven C. Schachter.

As a consequence of severe brain injury, too many with severe disabilities do poorly as their situations worsen. From severe to mild brain injury there is always the potential for social isolation. Loneliness and frustration are too often a consequence, often resulting in regression, substance abuse, and trouble with the law. Too many young people with brain injuries become homeless or are sent to state mental hospitals. This need not be the case. This is a matter of available resources and public policy.

While the statistics and studies on outcomes after severe TBI are grim, we must recognize that many are still able to live a quality life among those love them and who, when necessary, care for them. Those families and survivors feel the effort and the costs were not in vain, and my family is among them. A caring family and access to resources are powerful long-term determinants while and after physicians do the initial work. Persons with TBI often have a long life span if well cared for and the level of lifelong disability can be reduced with appropriate interventions.

The cost of war on our young soldiers

We are now engaged in an ugly war that has led to an epidemic of TBI. Many of these wounded soldiers would not have survived in previous wars. But today they receive outstanding medical and surgical care within minutes of injury and are rapidly transported to major hospital centers. In the battlefield – technology, neuropharmacology and the immediacy of highly skilled care are saving more lives in the war environment than in any other previous war. However, this immediacy and level of trauma care is not necessarily available in the civilian sector.

I have the opportunity as a mother and advocate to speak to the need for expanded research across the spectrum of care from bench to beside to medical and to vocational rehabilitation services. Our needs cross a vast continuum from coma to community. With that said there is a rich body of TBI knowledge and experience to be shared by both the private sector and the military. The Brain Injury Association is actively requesting that each sector reach each other, invest in knowledge translation and forge collaborations. The war has created visibility for TBI in a way that the civilian sector has not been able to accomplish in 30 years. This universal epidemic has been nearly silent until now, when it has become dead center on the public radar screen. This is the time to create advances for care and rehabilitation for those with TBI ….the promise of a better future for all those you save and care for!

Edited by Steven C. Schachter, MD