No Horns, No Trumpets: A Memoir of Brain Injury and Recovery

No Horns, No Trumpets

A Memoir of Brain Injury and Recovery

by Alice D. Clark and Richard W. Clark

Once a normal day is lost, will it ever return?

A reckless driver runs a stop sign and plows into a motorcycle. On that beautiful October day, a young mother’s life shatters as doctors tell her that her 15-year-old son will never come out of the coma. But when he does, the doctors are at a loss. No treatment plans for traumatic brain injury exist in 1970.

But Alice Clark refuses to take no for an answer—knowing her son is a fighter, she brings Rick home. As his greatest champion, she uses her head and heart to guide him from sitting in a wheelchair to downhill skiing, from being unable to speak to writing and editing a monthly newsletter.

In No Horns, No Trumpets, Alice and Rick tell their story of setbacks and successes with humor, honesty, and pathos.

No Horns, No Trumpets

A Memoir of Brain Injury and Recovery

Copyright © 2013 by Alice D. Clark, Richard W. Clark, and Pamela Clark Bickle

Electronic edition published by Soul’s Road Press www.soulsroadpress.com

All rights reserved, including the right of reproduction, in whole or in part in any form, without written permission of the publisher, except in the case of brief quotations embedded in critical articles and reviews.

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Inquiries should be addressed to

Pamela Clark Bickle

pcbickle@gmail.com

Cover art image © Patrick Poendl via BigStockPhoto.com

Cover and interior designed by Dayle A. Dermatis

Excerpt from Let Me Hold You While I May © 1970 by Mary Jean Irion from Yes, World: A Mosaic of Meditation. Used with permission.

With candor and passion, No Horn, No Trumpets shares a story of challenge and triumph, of perseverance and determination, of unconditional love and devotion.

The journey of Alice and Rick Clark, mother and son, through the devastation that is brain injury is truly inspirational. Life often makes heroes of ordinary people, and certainly that is the story of the Clarks. I am privileged to have known Alice and to know Rick, and to benefit from all they accomplished together. Their story serves as a guide for others entering the world of brain injury.

—Judith Avner, Esq., Executive Director

Brain Injury Association of New York State

Evidence of neuroplasticity abounds in No Horns, No Trumpets. For the professional, gradual but persistent reintroduction of skills carried out in a variety of settings offers insight into the unequivocal benefits of an ecological approach to rehabilitation. For the family members and the brain injury survivor, Alice’s approach of an inch is a cinch, a yard is hard reminds us that neuroplasticity is a slow and effortful process; time, persistence, and a sense of humor are the essential ingredients.

The personal journey communicated in the third person by Alice and the meandering musings of Rick’s memories before the accident and during the process of recovery reveal a poignant story of courage. Although this is the true story of one family, everyone who has traveled the road of recovery from traumatic brain injury, either directly or indirectly, will periodically see their reflection.

—Jeanne Ryan, PhD

Executive Director, TBI Center,

SUNY Plattsburgh

Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.

—Mary Jean Irion

Let Me Hold You While I May

To the survivors of traumatic brain injury and the caregivers in their lives.

Table of Contents

Foreword

About this Book

No Horns, No Trumpets

Afterword

Poem

Stories About My Mom

Photos and Documents

Foreword

I met Rick and Alice Clark in 1990 in Plattsburgh, New York, at a support group meeting sponsored by the Head Injury Association of New York State, which is now known as the Brain Injury Association of New York State. There had been a loosely organized support group in the mid-1980s that had gradually faded, and this meeting was the start of a newly formed group. There were only four people present: the three of us plus a 50-year-old man by the name of Charlie, who sustained his brain injury as a child. Charlie was the only person from the original group who attended this meeting and subsequent meetings.

It was apparent that Alice was Rick’s guidepost; she closely supported her son while giving him wide berth to ensure his independence. Their close relationship had been cultivated by years of dealing with unimaginable challenges. Sustained by her keen sense of humor and tenacity, Alice tirelessly nurtured her son back to health following his motorcycle accident in 1970. Rick was only 15 years old at the time and actually died at the scene. A chance encounter with two respiratory therapists at the same intersection immediately after the accident had saved Rick’s life. Alice was at the hospital with Rick every day and every night. After two months in a deep coma, he said his first words; he was discharged from the inpatient hospitalization four months after the accident.

Alice was told by the hospital staff that Rick would be completely nonfunctional and would have his needs best met in a residential setting; there was no other choice. Alice would have no part of that. By nature she was a woman who would find a solution when others would say there wasn’t one. She taught her son to stand upright and walk without fear by bringing him to the soft, white sand beaches in Florida where he could take a step and fall, get himself back up, and do it again. She intuitively understood that positive reinforcement was a powerful motivator, but for someone with a brain injury and significant memory impairment, the reinforcer needed to be tangible and ever present to avoid the out of sight, out of mind phenomenon. For example, she bought a Porsche and parked it in the driveway where Rick could see it. Every day, several times a day, Rick saw the parked car and excitedly questioned, Whose car is that? Each time, Alice would patiently tell him it was his car and that when he was ready, he would be driving it. The motivator worked. After many months of hard work, Rick recovered the skills necessary to drive his Porsche.

Socialization was something that Alice knew would be an important component of Rick’s successful long-term recovery. At the same time, she realized her son was impulsive, would get confused, had difficulty remembering people and names, and would get distracted by his own thoughts. She enrolled Rick in a Dale Carnegie course to teach him how to communicate with others and how to remember information that was essential for effective social interaction. He saw a psychiatrist who understood brain injury, associated depression, and cognitive problems that contributed to impaired thinking and reasoning. He gave Rick quips and quotes to inspire him and taught him strategies that he still uses today. These innovative approaches took place before I met Rick, so that when our paths eventually crossed, I met a bright, cultured, humorous, and very social 35-year-old man.

Rick and Alice attended the support group meetings every month. Alice helped families and caregivers of newly injured brain injury survivors understand the process of recovery. Rick served as a beacon of hope in a world of despair for what was possible given support, time, and hard work. By 1992, regular participation in the support group had increased; survivors and families bonded, supported each other, and as a group developed a voice. They repeatedly expressed the need for more community re-entry services as well as information to help people understand the silent epidemic known as traumatic brain injury. Their voice was heard. In 1994, the State University of New York at Plattsburgh was awarded a nearly half-million-dollar grant to offer services to the community to help people with brain injury; this marked the inception of the North Country Regional Traumatic Brain Injury (TBI) Center.

In order to increase awareness about the risk for brain injury and to better inform the public about associated problems, two projects were initiated. The first project was the Think First program for the prevention of head and spinal cord injuries, directed at middle school and high school students. Rick prepared a talk about his injury and recovery, complete with a photograph of his sprawled body at the scene of the accident, the twisted wheel rim remains of his motorcycle, and the helmet that saved his life. He practiced his speech countless times so that he could present it smoothly and effortlessly. His presentation was so strong that signs of his brain injury were hidden until the question-and-answer period, when he hesitated, stammered, and did his best to retrieve words. Students were mesmerized and moved by Rick’s speech and his interaction with them. There is no way to know how many brain injuries he helped prevent, but one thing is for certain: His message was heard by thousands of adolescents over the years he gave his talk.

The second project was the initiation of a newsletter about brain injury. We needed an editor, and Rick stepped up to the challenge; he even coined the periodical Sudden Impact. As he wrote an article for each edition, a job coach from the regional vocational center provided him with the support needed to pull the issue together. The newsletter offered Rick a venue for unleashing his insightful thoughts—thoughts that he struggled to express orally but flowed from him in when he wrote. As of the time of this foreword, Rick has been writing newsletter stories for sixteen years. The process of going in to work, being responsible for completing a task in a timely manner, and communicating regularly with others at the Traumatic Brain Injury Center offered him stimulation, structure, purpose, and direction. We have all benefitted from Rick’s chronicles. He has given us a crystallized glimpse into his world from the moment of conscious awareness, through the painstaking struggles of never-ending recovery, to living each day, one day at a time. His articles often have a poetic quality because it is sometimes the only way to describe an experience for which there are no words.

It has been a pleasure to know and spend time with Alice. She taught me more about brain injury and rehabilitation than any course or doctoral program could offer. Rick has been, and continues to be, an inspiration; he has a spirit and love of life that is unsurpassed. I thank both of them, and Rick’s sister, Pam, for allowing me to be part of their lives and for their contributions to the community and now the world via the Internet, where Sudden Impact is now published (TBIcenter.org).

—Jeanne P. Ryan, PhD

Executive Director, TBI Center and

Distinguished Teaching Professor of Psychology, SUNY Plattsburgh, 2012

About this Book

Our mother, Alice Clark, wrote this book because she had a story she wanted to tell—about how my brother, Rick, suffered a severe traumatic brain injury and how she refused to give up on him. Rick is where he is today because of her. After his motorcycle accident in 1970, our mother devoted all her time and efforts to helping Rick regain his independence. She succeeded!

During the 1990s, Rick began to write stories about what life was like living with a brain injury. Many of his stories were about everyday struggles a person with TBI faces and how a positive outlook and appropriate strategies can help. Rick also wrote about his personal experiences in stories that were at times humorous or heartbreaking—but most often inspiring. These personal stories are included in this book and are placed after selected chapters.

The publication of this book was made possible by many helping hands and loving hearts. My gratitude goes out to Jeanne Ryan for her heartfelt contribution and assistance, to Judith Avner for her supportive words, to Cindie Geddes of Lucky Bat Books for her invaluable proofreading services, to Mary Jean Irion for her kindness and permission, to my Aunt Joan for her encouragement and love, to my bosom buddy Christy for reminding me how to correctly use an adverb, to my husband Milt whose patience is endless, and finally to my cousin Dayle Dermatis in whose capable and loving hands No Horns, NoTrumpets became a reality and made my mother’s dream come true.

—Pamela Clark Bickle

October 2012

PART ONE

Chapter 1

Before

Alice was a single mother, successfully working as an account executive in a small securities brokerage firm, spending her free hours raising and enjoying her two teenage children. They were her life: a sparkling girl, Pam, 18; and a tall, handsome son, Rick, 15. The closeness and understanding the three of them shared started from the very beginning. When difficult family problems had erupted ten years earlier and her marriage failed, she left all her material possessions in exchange for sole custody of the children and moved away. The three of them were now alone in a new city, thousands of miles from friends and relatives. This brought them even closer.

Although times were tough for them in the first years, with poverty hovering close to their doorstep, both Pam and Rick were oblivious to this, and luxuriated in the glamour of Florida. The free ocean, with its desolate, long white beaches in the 1960s, became a haven for their merriment. Picnics, bonfires, swimming, surfing, exploring, and friends evolved into a new and wonderful world for them.

They were well settled in their Florida life, with Pam just graduating and Rick a junior in high school. He was doing amazingly well with an A–B average and working part-time as a busboy in a large Palm Beach hotel. Well liked by his peers and teachers, he received the Civitan Award in sixth grade for best all-around student. He also captured the title of Courtesy King, was chosen to be a patrol boy for two years, and was an outstanding pitcher in the Little League.

An ambitious youth who started making money at the age of 9 selling TV guides door-to-door, he progressed to paperboy with the Palm Beach Post-Times and stayed with them four years. Seven days a week, he was up at 4:00 a.m. and never asked for help, even in the most inclement weather. He knew his mother worked hard and he did his best to make life easier for her.

For five years, part of his summer vacations had been spent in Lake Placid, New York, with his father. Caddying at a golf resort became his daily routine and enjoyment. He already kept a savings account, had purchased mutual fund shares, and owned his own motorcycle. He was king of his young domain.

Each morning began the excitement of a new day for this lad. With hopes abounding and a ready smile curving his lips, he was always eager to face the known as well as the unknown. All parents dream of having a son like Rick.

Crashed…Clear Conception

It’s amazing to me and my mind, as well as members of medicine, how the brain in some ways can heal itself so miraculously! Its complex operations are beyond comprehension for those who are brain injured and for those who study the brain itself.

As I sit here at my desk, I daydream occasionally and unintentionally, to relax my mind. More often than not, my daydreams are unintentional and frequently intrude upon my thoughts since the traumatic episode. Many of my memories are from the period before my accident.

It is peaceful here looking out over the trees and the rugged terrain that’s a symbol of the Adirondacks. I can go way back to when I was in second, third, fourth grade and so on. It gets a little hazy as I approach my junior and senior high school days, and I confront my near doomsday. I probably do this just to keep my recall button activated.

As I tried this today, on an overcast day, for some reason those etchings or imprints in my mind were quite vivid. I even recalled that shirt—the red-and-white one that kid in my second grade class was wearing. This may sound like it’s nothing unusual, but if I honestly try, I can remember that his name was Mike, our second grade athlete.

And there’s more, but I will move on to the third grade. Our principal’s secretary’s daughter, Donna, was my fantasized sweetheart. In the fourth grade, Ellen was my honor role competitor, and in the fifth grade, I can recall quite vividly my teacher, good old Mrs. Smith. Then there was the sixth grade. This was the big time where I won the School Citizenship Award.

My junior year, where I had eight classes rather than one, was a hustle-and-bustle maze (and that’s not the maze I’m going to have to encounter four or five years down the road, the effects of which will last me a lifetime!). Anyway, about that time things start to get a little foggy unless I adamantly stick to what I am doing and magnify the memories in my brain. I can recall my teachers’ names, especially the physical education coach. He would make us all run ten times around the track in the hot Florida sun!

Then came the high school years—they were great in the beginning. I recall it was buddy-buddy and sweetheart city for awhile. I was able to keep up a good grade point average. At that time I had two jobs—one early (4:00 a.m.) working as a paperboy, and then I worked as a busboy at a Palm Beach County hotel in the early evening. I quite vividly recollect at the hotel they used to have a TV show called Treasure Isle.

In the summertime, I returned north and caddied at the Lake Placid Club which was in full swing. They would have celebrities from all over. At that time I really made the bucks! I caddied again after completing tenth grade in Florida. Saving and piling my earnings away in a soldered tin can!

Eleventh grade started out great (I thought). I had a good job, doing well again in school, money in the bank, even investing in a mutual fund, and my dreams came true: a shiny, chrome-plated motorcycle.

Not to jump through bad times, but who needs them? Years of hospitals, home therapy, rehab, and repetitive schooling…Sure, I crashed, but now out of life, I’ve acquired a Clear Conception!

Published in Sudden Impact, Issue 4.4 (edited)

Chapter 2

New World of Fear

The day began like any other that October in 1970. If human minds could perceive what lies ahead, would one try to rush through the average day to find a perfect tomorrow? Or in retrospect, appreciate the enjoyment of the fragile present? Once a normal day is lost, will it ever return?

At 3:30 p.m., the terrifying telephone call came without warning, like most tragedies. Alice’s body shuddered with a piercing heart wrench that can only be felt to be understood. No one can ever be prepared.

This is the West Palm Beach police. Your son, Rick, has been in a motorcycle accident. He is at St. Mary’s Hospital, in the emergency room.

An electric shock of fear stabbed through her, engulfing her in unreality as she heard her own voice ask, How is he? Is he badly hurt?

The unwanted answer: He is seriously injured. Get here as soon as you can.

A coworker drove her to the hospital. How agonizingly slow the drive seemed, although speed limits were being broken. She urged the driver to go even faster, her nails were now clenched deep in her flesh, trying to keep a grip on her senses and keep fear from overwhelming her.

Oh God—Oh God, please—let him live!

The emergency door swung open automatically as she approached, hanging tightly to the arm of her coworker and close friend. All seemed quiet—too quiet—she sensed the hushed attitude of the police and hospital attendants when she entered. No one could tell her how Rick was.

The doctors are working on him; he’s a fighter, was the only consolation she received.

Many days later, while spending her lonely vigil in the waiting room next to intensive care, she learned the reason for the attitudes that day. A truck driver had run a stop sign and unmercifully smashed into her young son on the motorcycle that was his pride and joy. He had lain dying in the middle of the