From Here to There

Essays by forty-five women and men who faced the process of adjusting to a spinal cord injury. They share their pride at having found their own way through the initial trauma (There), struggled with sudden and substantial life changes, and arrived at something they consider “adjustment” (Here).

A Montana lineman, a Native American woman, a wounded Vietnam veteran, a skinny dipper, an auto mechanic, a teenager working a summer job on a farm, a Japanese student, an Explorer Scout learning about law enforcement, and an elementary school music teacher. These are just some of the forty-five diverse women and men who share their experiences in From There to Here: Stories of Adjustment to Spinal Cord Injury. In their own way, each essay author faced the process of adjusting to a spinal cord injury (SCI).

In their essays, they share their pride at having found their own way through the initial trauma (There), struggled with sudden and substantial life changes, and arrived at something they consider “adjustment” (Here). All agree that the process is lifelong and that their SCI experience has been a source of rich discoveries about themselves.

The period immediately following a spinal cord injury is overwhelming — for the person with paralysis as well as for family and friends. It is a time of powerful emotions with the routine of daily life thrown off track, and with a new and unfamiliar array of tasks and decisions to deal with. Most confounding, the future is a mystery. What will life be like for everyone involved? What are the options for the person using wheels instead of legs? What dreams and plans have to be surrendered? Can new dreams replace them? These are intimidating questions. Anyone would feel hard pressed to imagine how to deal with them — much less thrive and live happily.

The essay authors are ordinary (“normal”), everyday women and men who, on the mysterious journey of SCI, chose life over surrender. Contrary to media stereotypes that only superhuman, heroic people succeed in the context of disability, these very real people have used their talents as best they can, and have succeeded. They tell it like it is — without sugarcoating. They show us the fears, doubts, and obstacles on their journeys — and they celebrate their satisfactions and surprising breakthroughs.

From the Foreword by Marcie Roth, Executive Director, National Spinal Cord Association

You — or someone you care about -— is "There." They are dealing with the initial onslaught of a spinal cord trauma. You're probably wondering how in the world anyone gets to "Here."

"There" begins in an emergency room or hospital bed when a person learns that she/he has a spinal cord injury (SCI) or disease. It's a time that evokes a massive reconsideration of one's life and future - perhaps one's very identity. It is an experience of great change, often of confusion and pain - physical, emotional, and spiritual.

"Here" is a person leading a successful, fulfilling life with the effects of their SCI. "Here" is a place they could not have imagined from "There." It is a place of active living, in which their SCI is integrated into how they move through their lives, with a clear sense of who they are — with, and entirely apart from, their disability.

As Executive Director of the National Spinal Cord Injury Association (NSCIA), and as an active member of the disability community for over 30 years, I have come to know many people who have traveled from "There" to "Here." Gary Karp is one of them. When I first met Gary in 1998, he was about to publish his important book, Life On Wheels: For The Active Wheelchair User (O'Reilly & Associates, 1999), a vehicle for him to share insights from his own disability experience with other adults who are wheelchair users, their family members and friends, and the professionals who serve them. With this new book, Gary and co-editor Stanley Klein have added another valuable resource to the set of tools available to help people make the best possible transition from "There" to "Here."

Hope for a rich, full life is a motivator. But hope based only on desire risks unrealistic expectations. Hope based on real examples translates into real goals. There is assurance in seeing that people just like you have done what feels impossible - if they did it, why can't I? Such is the source of the empowerment offered by this book.

From the Introduction by Gary Karp and Stanley D. Klein

We encouraged authors to reach deeply into their inner thoughts and feelings and to lay the darkness out, so as to emphasize the light they ultimately reached. We did this because we believe it is important to share emotions, sorrows, and joys with loved ones, friends, and/or trusted professionals — and to enable readers to connect emotionally with essay authors…

Although each essay opens with some “demographics” — level of injury, date of injury, age at injury, and hometown — we urge readers to take the level with a grain of salt — and read on. Any essay author, regardless of level of injury, may provide that particular spark of understanding that can make a difference for someone else that is trying to find his way. And, readers can feel free to read essays in any order.

The question of recovery looms large in the minds of anyone with a recent SCI, as well as family and friends. People do not make a full recovery from a spinal cord injury because the cells in the central nervous system cannot regenerate in response to trauma, in contrast to nerves outside of the central nervous system that can do so. Partial recovery is, however, quite common. Some initial impairment can be associated with shock to the cord, rather than actual structural damage, and heals to some extent. Some people make surprising recoveries that could not have predicted based on level of injury.
While our essay writers would rather not have these particular stories to tell, they are not waiting around for a cure. They are interested in the research — one is himself a researcher — and will welcome any discoveries that would benefit them. In the meantime, they’ve chosen to get out and live their lives…

This collection of rich, human stories can shed some light on the uncharted path ahead. When the light at the end of the tunnel is not in view, it can be discouraging and frustrating as one tries to discern which way to turn. We are confident that anyone dealing with an SCI experience — both people who are recently injured as well as people with more experience — will find parts of the book that will resonate, connect, and provide hope that what feels impossible today may not necessarily be so tomorrow.

Individuals with spinal cord injuries have a great deal in common and are a unique group of human beings; yet, their needs and desires are same as those without SCI. By telling their own stories and listening to the stories of others, they can be both teachers and learners. They teach from the their unique awareness of how adaptable we humans are, and they learn because they know the value of confronting change and being open to its lessons.

From “The Water’s Just Fine” by Gary Karp

There was only time to respond from instinct, spreading my arms as I fell to keep my balance. It felt like I’d landed flat on my back, but my friends who had the horror of witnessing it say that I landed on my butt first. That explains why my back broke at T12/L1, where the bottom ribs meet — and so reinforce — the spine. I was instantly unable to move my legs.

I barely grieved. It was another event to just take in, to move through. I was too deeply in the mode of getting back into the world, and too emotionally protected to even feel the full impact of the news. Denial was undeniably my main coping mechanism.

I also adapted by doing — getting back on the road with hand controls, going to outpatient therapy, starting architectural school, having missed only the fall term, and renewing my efforts to find the love of my life. I just got myself out there, thinking of it as being like jumping off of a diving board into cold water; the trick was to get yourself in the air, then you have no choice but to adjust.
My disability identity felt foreign. In public, in my mind, I would think to the people around me, “But I’m one of you! I was walking just a few months ago!” I was uncomfortable with feeling like I looked “disabled,” so I compensated with fast wheeling and jumping curbs. I couldn’t bear to be seen being pushed in my chair in public.

Periods of depression began to seep through my heroic façade, as I blamed my paraplegia for my growing unhappiness and loneliness. I had leapt out into public, but was very self-conscious beneath the surface. I was dating, chasing after an idealized love, but expecting rejection. I was awash in unrealistic fantasies of stardom, based reasonably enough on my talents as a musician who started to play at seven and perform at fifteen, but afraid the wheelchair would cost me a spot on the world stage…

I find it difficult to separate my adjustment to paralysis from my own personal issues, from the karmic map of lessons I believe I’m meant to face in this lifetime. All of these experiences in my romantic, professional, family, and social life have fueled the fire of my personal evolution. Clearly, paraplegia has added fuel to that fire. It is simply integrated into the man I am today — and am still in the process of becoming.

"The stories collected here explain how people have dealt with adversity and come out on top. These testimonials to the power of the human spirit are an inspiration to all of us."

"These stories are so intense, but I emerged grateful for the bone-crushing honesty. A far cry from Hollywood's disability-of-the-week victim movies!"

"From There to Here shows the power of personal stories. I wish I had a copy when I became disabled, many years ago. For people who are
newly disabled, their friends and families, this is a resource to be treasured. For everyone else, this book shows us how resilient we all
are just because we're human."

"From There To Here is an excellent resource that will offer people with recent injuries that critical glimmer of hope at the start of
the journey of adjustment. I plan to make good use of this book in my Patient Education classes."

In 1973, when he was eighteen, Gary Karp fell out of a tree, injuring his spinal cord at mid-back and becoming paraplegic. After his accident, Gary graduated with degrees in architecture, and then worked in the presentation graphics field as a designer and manager, specializing in computer graphics. In 1993, he switched careers and established an ergonomics consulting business which serves a range of clients in the San Francisco Bay Area.

Gary is the author of two books, Choosing a Wheelchair: A Guide for Optimal Independence (O’Reilly & Associates, 1998) and Life On Wheels: For the Active Wheelchair User (O’Reilly & Associates, 1999). Life on Wheels is widely regarded as a definitive overview of the modern disability experience. Karp writes for New Mobility magazine, and is a board member of the National Spinal Cord Injury Association, for whom he is editor-in-chief of their quarterly magazine, SCI Life.

Mr. Karp is a highly regarded public speaker, and an accomplished juggler. Gary lives in San Rafael, California, with his wife, Paula Siegel.

Stanley D. Klein, Ph.D., a clinical psychologist and frequent speaker to parents and health care and education professionals from Gloucester, Massachusetts, has worked with children with disabilities and their parents for fifty years. In recent years, he worked with adults with disabilities as Education Director for Abilities Expo.

A recipient of numerous national awards for his work, Stan was co-founder and former editor-in-chief of Exceptional Parent magazine. He has co-edited The Disabled Child and the Family (Exceptional Parent Press, 1985), It Isn’t Fair: Siblings of Children with Disabilities (Greenwood Publishing Group, 1993), You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities (Kensington Books, 2001) and Reflections on a Different Journey: What Adults with Disabilities Want All Parents to Know (McGraw-Hill, 2004).

The father of two adult children, Stan is active in politics and enjoys trying to play tennis.