From There to Here Final Draft.Gk

From There To Here 1 From There To Here From There to Here Stories of Adjustment to Spinal Cord Injury Edited by Gary Karp and Stanley D. Klein, Ph.D. This eBook of From There to Here is published thanks to the sponsorship of… www.paralysis.org 2 From There To Here Table of Contents Introduction ..................................................................... i 1 Falling Into Grace...........................................................1 Elizabeth Fetter Eastman 2 Redefinition of Masculinity .............................................9 Ned Fielden 3 Capable Shogaisha........................................................17 Miki Matheson 4 New Dreams ..................................................................24 Jim Langevin 5 Lucky Man.....................................................................32 Victor Cerda 6 Wife, Mother, Me...........................................................39 Faye Pruitt 7 Life After a Run at the River..........................................46 Chuck Stebbins 8 Walking the Fine Line ...................................................53 Mark Edwards 9 No Barriers....................................................................60 Leslie Sward Greer 10 Finding the Cure on the Inside......................................67 Michael Hurlock 11 Back on the Dance Floor of Life ...................................74 Bobbie Humphreys 12 Hunting More Than Ever ..............................................82 Breck Lonier 13 A Search for Self-Worth ................................................89 Kris Ann Piazza 3 From There To Here 14 SCI – My Path to Scientific Discovery ..........................96 Sasha Rabchevsky 15 Growing Through Adversity........................................104 Flo Kahn 16 Coming Full Circle......................................................112 Kris Gulden 17 My Bag of Tools ..........................................................119 Larry Nitz 18 Devil’s Night ...............................................................127 Audrey Begay 19 Life Need Not Be Easy, As Long as It’s Interesting ....134 Aline Moran 20 Time, Time, Time: See What’s Become of Me.............142 Bill Hiser 21 Living Well is the Best Revenge ..................................149 Gordon Palmer 22 Ups, Downs, and Breakthroughs.................................157 Kirk Feyerabend 23 Holding Together: A Newborn Life.............................164 Samantha Kimball-Fell 24 Take the Pain...............................................................171 Mark Mathew Braunstein 25 Never Should on Yourself............................................178 Renee Alper 26 No Roadblocks, Only Detours.....................................185 David L. Baker 27 I Wasn’t Born a Mermaid............................................192 Jaehn Clare 28 Give it a Year...............................................................201 Steve Dalton 4 From There To Here 29 My Rides in Hearses....................................................208 Walter Kimes 30 August..........................................................................215 Kimberly Clarke 31 The Water’s Just Fine .................................................222 Gary Karp 32 A Dark Path to God.....................................................230 Vickie Baker 33 Surviving Paralysis – Crafting a New Life..................238 Stephen L. Crowder 34 Life Is to Be Lived........................................................245 Patricia Gordon 35 Beyond the Flagpole....................................................253 Mitch Tepper 36 When You Come To a Fork in the Road, Take It.........261 Frances Ozur 37 I Will Not Be Denied ...................................................268 Sean Denehy 38 Survival of the Fittest ..................................................276 Tiffany Nickel 39 I Don’t Want to Fail....................................................284 Nicolas W. Libassi 40 In Competition with Myself .........................................291 Randy Snow 41 The End of Denial .......................................................298 Don Bondi 42 My Body Is Only One Part of Me................................305 Ginger Lane 43 Mourning and Healing................................................313 Daniel H. Gottlieb 5 From There To Here 44 Transitions from the Abyss..........................................320 Axel Doerwald 45 Teenager Interrupted...................................................328 Erin Cornman Resources ....................................................................337 6 From There To Here Copyright © 2004, Gary L. Karp and Stanley D. Klein All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means — electronic, mechanical, photocopying, recording or otherwise — without the prior written permission of the publisher. 7 From There To Here Introduction 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 diverse people who share their experiences in this book. In their own way, each one faced the process of adjusting to a spinal cord injury (SCI) and its many implications in their lives. In their essays, they share their pride at having found their own way through the initial trauma, their struggle with sudden and substantial life changes, and their arrival at something they consider “adjustment.” All agree that the process is lifelong and that their SCI experience has been a rich source of discovery 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 in which the routine of daily life has been thrown off track, and one faces a new and unfamiliar array of tasks and decisions. 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 for mobility? 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 with paralysis. The essay authors are ordinary (“normal”), everyday women and men who, on the mysterious journey of spinal cord injury, i From There To Here 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 resources and talents as best they can, and have moved on to reclaim their lives — and more. 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. How It All Began This book was conceived in a restaurant near Harvard Square in Cambridge, Massachusetts. Gary was in town on a speaking date, and the Boston area is Stan’s home turf. Stan had a recent success with a book of essays called You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities (Kensington Books, 2001). Aware of the success of Gary’s book, Life On Wheels: For the Active Wheelchair User (O’Reilly & Associates, 1999), and his nearly thirty years of personal experience with SCI, Stan asked whether a similar book of essays could be useful for people with SCI and their loved ones. Gary described how most people with a recent SCI that he meets want to know two things. “They ask me how I got from ‘there’ (recently injured) to ‘here’ (fulfilling life), and how long it took. We can ask people to focus on their own process of adjustment rather than merely giving advice. Then, readers will pick up on the parts of the stories that are relevant to their own lives.” After a conversation with Jeff Leonard — publisher of New Mobility magazine — and a draft essay by Gary, From There ii From There To Here To Here was under way. (We warmly appreciate Leonard Media for having been the initial publisher of this material.) Full-page ads inviting people to submit an essay appeared in New Mobility, and the guidelines were spread via the Internet. After sorting through many thoughtful and moving essays, Gary and Stan selected forty-four and went to work with the authors. We encouraged the authors to reach deeply into their inner thoughts and feelings and to lay out the darkness, 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 feel a personal connection with the authors. The questions addressed in these essays loom largest in the first stages of the SCI experience, yet we believe that there is much to discover here for anyone at any point along the path of life with a spinal cord injury, even those who are well past the initial trauma of SCI. A Brief Spinal Cord Primer For readers not yet familiar with the levels of spinal cord injury and their implications, here is a brief primer. The higher the location of a trauma to the spinal cord, the more of the body is disconnected from communication with the brain. “Messages” that originate in the brain travel down the spinal cord, and then branch off from the cord to the peripheral

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