Excerpts

Preface

“All sorrows can be borne if you put them into a story or tell a story about them.” – Isak Dinesen

There were times when my children accused me of trying to emulate the “Father Knows Best” household, but I wasn’t put off with the comparison. When my husband and I were married, we agreed that my primary role would be that of a stay-at-home wife and mother. I had given up my job and left my home state to marry, so it wasn’t extraordinary that my new “job” entailed caring for our home and eventually our family. I took my new job seriously. I was structured about housekeeping - the silver was routinely polished, windows washed on a rotating schedule, and baseboards scrubbed along with the kitchen floor. Looking back, perhaps I was a bit over the top but I never thought of myself as obsessive compulsive. I always believed that if you take on a job, you should give it your best effort.

Dinner was served promptly at six every night and all four children were expected to be present. A major disadvantage to that arrangement was that the kids’ friends knew they would find them at home at that hour and habitually called and interrupted our dinner hour until some ground rules eliminated that problem. Menus were planned in advance and there was a full course dinner with homemade bread and always a freshly baked dessert. It was my way of fulfilling my role and it seemed so natural at the time, bringing the family together.

We discussed what was happening in the world, school and life in general. From time to time my children voiced their secret wishes that I would take a job outside the home, leaving them free to be latchkey kids so they could gorge themselves on junk food, talk on the phone, and entertain friends after school. Wishful thinking on their part! They did not have to punch a time clock, but I was there and most of the time I knew what they were doing. I waited up on the nights they were out, and the door remained unlocked and the lights on until the last one arrived safely at home.

I vividly remember one dinnertime while having a conversation with my son Tim. I glanced past him and gasped in surprise while exclaiming, “Oh my goodness, there is ketchup on the baseboard!” I immediately rose from the table, filled a container with water and cleaning solution, and bent down on my knees to scrub the stain from my immaculate baseboard. All the time I was on my knees, I was berating the anonymous offender. My kids teased me unmercifully about my fetish for cleanliness and suggested that one day I should write a book and title it Ketchup on the Baseboard. It became a standard family joke that I could get so caught up in what appeared insignificant to others.

Clearly, my priorities at that time were focused on home and hearth. I was the proverbial housewife who drove the field trips, made the cupcakes, volunteered to do the visual acuity screening at school, served as homeroom mother, religiously attended PTA meetings, taught Sunday School, and chauffeured for dancing lessons, athletic events, and back and forth to school. I was happy and considered myself blessed with a loving husband and provider and four wonderful children.

Like a jigsaw puzzle whose pieces were suddenly scattered all over the floor, the reassuring pattern of our lives was abruptly shaken in November 1982 when Tim, our second oldest child, sustained a traumatic brain injury in an auto crash on his twenty-second birthday. “Ketchup on the baseboard” would forever mean something else.

* * *

This book began to take shape as we sat outside the hospital’s emergency room, anxiously waiting for word of Tim’s condition. Worried, frightened, helpless to do anything but wait, I pulled out a small spiral notebook I kept in my purse for shopping lists and appointments. As nurses came out of the inner reaches of the emergency department with updates, I began taking notes. I still have that notebook and seven other larger ones. As I’ve reread them from time to time, I realize how terribly naïve I was about the future of my newly turned twenty two year old son and our family.

* * *

The years since 1982 have been significantly different from my ideal, pre-1982 expectations. Sometimes I refer to the years since Tim was injured as an odyssey of agony. Just as Homer’s epic poem The Odyssey recounts the attempts of Odysseus to return to his home in Ithaca after the Trojan War, I often felt we were wandering through a maze on a journey to find the old Tim again. It took a while to realize that the old Tim was gone. When the new Tim emerged from the devastation, he had some of the characteristics of the person we knew before, but his future was vastly different. And the journey is not yet complete.

Writing has been therapeutic for me, helping me cope with what I have not been able to change. My hope is that what I’ve learned and share in the following pages will help you gain insight and knowledge as you encounter changes and challenges in the months and years ahead with your family member.

Over the past two decades, I have written extensively about the consequences of traumatic brain injury and its effect on the family. Information is the major key to effectively managing life and families play a significant role in the outcome following brain injury. I hope that the information contained herein will help you journey down this uncertain road. I hope you will develop a sense of camaraderie with and benefit from the experiences of those who have traveled this way before. Empowered with information, patience, and love, your life can move forward in a positive manner.

Excerpts from Ketchup on the Baseboard. Please do not copy.

By: Marilyn Price Spivack

On November 23, 1982, the Rocchio Family changed forever. Tim Rocchio was in a horrific car accident. This catastrophic event changed the course of this family’s future.…Access to appropriate and timely trauma management, skilled rehabilitation, time, patience in the recovery process and the support of a loving family who is informed and involved made the difference over the years.

With the passing of time over twenty years, Carolyn and I, like many caregivers whose loved ones were injured years ago, are now dealing with our own aging and health issues as well as those of other beloved family members. This book addresses those often unspoken concerns. As you read, you will find that Carolyn’s twenty years of intense and personal experience has been thoughtfully shared. Issues of sibling relationships, complex and painful after a traumatic brain injury, are not well addressed in rushed hospital environments. Families need to deal with them on their own and often think they are alone in this struggle. Marital relationships are often threatened. How fortunate it is when a marriage is secure enough to sustain and grow stronger through this journey. The Rocchio family is a testimony to the benefit of that strength.

I do hope that Tim’s incredible journey, so well documented by Carolyn, will be read and discussed in support groups. This book can and should be a call to action and a road map to increased advocacy at many levels to bring change as she and other survivors and families have done. As this book goes to publication, Carolyn’s efforts to help Tim are ongoing. Along the way, untold numbers of others have been helped because of the road she has traveled.

Personally, I would like to put this book in the hands of every significant family member of survivors of traumatic brain injury and make it mandatory reading for all neurosurgical, neurology and physical medicine and rehabilitation residents and neurorehabilitation professionals.

Carolyn and I met by telephone in the early eighties, when we were both on a national search for help and professional expertise. I had already traveled on a similar journey for my own daughter, Deborah Lee Price, who was injured on March 15th, 1975. Our frustrating search changed course on a Sunday in April of 1980 when my husband, Dr. Martin Spivack, and I called a small group of caring professionals and families together to start the National Head Injury Foundation (NHIF), now known as the Brain Injury Association of America (BIAA). It was through the growth of the NHIF that Carolyn found me and an immediate connection was made. When I received her call in 1982, I knew instinctively that I was speaking to a woman who not only needed immediate assistance in her own journey with her son, Tim, but who would in time become a natural and gifted leader in assisting others. A short time later, I asked her to take on building a strong advocacy and support chapter in Florida. I am glad to say that my instincts were right! Carolyn made a difference, not just one family at a time, but in effecting change in significant ways at many societal and political levels. Her efforts were extraordinary and the Florida chapter grew exponentially. Two decades later, Florida remains one of the Brain Injury Association of America’s strongest and most influential state associations and leads the national movement in prevention policies and legislative mandates to assist people with brain injuries.

Carolyn Rocchio is a private person, but she knows that healing oneself can occur through helping others. She is a role model as a family caregiver. She made sure she was always informed. She was always gaining and disseminating information and knowledge as a layman in a complex field of neuromedical and neurorehabilitation care and therapy. We both know that is critical for patients and families.

This book has two parts. The first, a very personal accounting of her life as Tim’s Mom and caregiver, is based on her meticulous journals and diaries. Carolyn courageously reveals her private struggles with her own emotions and personal needs, her conflicts as mother to her other children, and as a loving and devoted wife. The second part is a compilation of articles she has written over the years as the Family Council Chairperson for the Brain Injury Association of America and as a columnist for its two publications TBI Challenge and Brain Injury Source. These articles are important guideposts for every family whose loved one is in an acute care hospital or a rehabilitation program as they embark on this personal journey of traumatic brain injury. They are a gift of education and information that every family needs and should be the subject of support group meetings and discussion groups.

One of the many important messages of this book is the early need for information and education. It is one of the lifelines for family care providers who face so many unknowns regarding prognosis and long term outcomes….

This book evokes hope and a challenge to the newer generations of individuals who sustain traumatic brain injuries and their families. They may consider the real advantages of sharing and be willing to help themselves by helping others. Healing Through Helping is not a new concept - ask Carolyn!

Ketchup on the Baseboard… is a connection to positive action from an extraordinary mother and effective advocate.

From a friend and loyal admirer!

Marilyn Price Spivack

Sample pages from Ketchup on the Baseboard. Please do not copy.