The Graceful Art of Falling

By L. White

The Graceful Art of Falling provides an inside look at fifteen years of one womans experience with a chronic, progressive muscle disorder. Beginning at age twelve when she was diagnosed, L. White tried to ignore and deny that she was any different than all her friends and that she was afflicted by a degenerative disease. Life in a small town with little diversity meant the smallest difference stood out like a sore thumb, and her difference was not small. Not wanting to be different, she found clever ways to hide her weakness throughout middle school, high school, and even into college, which included Google-Mapping routes to avoid stairs.

Only after several years, and when she realized her weaknesses could no longer be ignored, did L. White find the courage to face her disorder, learn to cope, and eventually accept the ongoing changes to her body and her life. This book is a motivational and true account about growing up, struggling to find acceptance, and facing your future when you know exactly what your fate holds. The Graceful Art of Falling shows readers what its like to accept what you cannot change and find the strength to keep walking.

• Language: English
• Publisher: AuthorHouse
• Release date: Sep 19, 2013
• ISBN: 9781491816028

L. White

L. White grew up in a small New England town in the heart of the Green Mountains. Diagnosed at just twelve with a chronic, progressive disease, she has struggled over the years to find acceptance and strength. In April 2011, L. White was moved by a friend to share her experience with muscular dystrophy. She has spent the past two years compiling her most embarrassing, emotional, and personal stories about living with this disease into one book. In writing this book, she realized it was much easier to face her challenges on the day-to-day than to relive them through writing one right after the other. Reliving these experiences often made her depressed, so Ms. White took several long breaks from the book. Still, since she first committed to sharing her experiences, she has been motivated to finish in hopes that her story would help others experiencing similar challenges. L. White is now twenty-eight years old and lives in New Mexico. She has her masters degree in public administration and is working at a local nonprofit. It is her dream to work in a position involved in health policy. She continues to attend meditation classes and support groups. She plans to donate a portion of all proceeds from this book to organizations that conduct research and support individuals with muscle disorders. If you would like to contact her about this book, please e-mail: [e-mail].

Book preview

The Graceful

Art of Falling

L. White

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AuthorHouse™ LLC

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Bloomington, IN 47403

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Phone: [phone]

© 2013 by L. White. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 09/17/2013

ISBN: 978-1-4918-1601-1 (sc)

ISBN: 978-1-4918-1602-8 (e)

Library of Congress Control Number: 2013916648

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

PREFACE

ACKNOWLEDGMENTS

INTRODUCTION

PART 1

PART 2

PART 3

AUTHOR’S NOTE

ABOUT THE AUTHOR

PREFACE

I would like to begin this book by stating that the words, thoughts, and feelings I write and describe in these pages are not how I feel every day, or even the majority of days, in my life. I admire those who put on a happy face and smile through their adversities, but frankly, I don’t buy their complete happiness. Very few people are fully content in their lives all the time. Everyone has negative thoughts; many feel as if they can’t make it through at some point or another, and I think it would be a disgrace to my experience not to share my most shocking and shameful thoughts (although, I hate the word shame because it is only a cultural stigma). I believe a book solely about my positive thoughts on my good days would not be truthful, and would not resonate with those who struggle from time to time. And we all struggle; we all have our problems.

ACKNOWLEDGMENTS

I would first like to thank my family and friends. I have a wonderful support system, without which I wouldn’t be the person I am today. Even with the overwhelming sense of hopelessness I sometimes feel with this disease, I feel lucky to have so many people I love and who are always there when I need them; you are my world. I would also like to thank the amazing individuals who have helped a stranger up off the ground when she falls. You have no idea how much this seemingly simple gesture means to me. I would like to extend a special thank you to Shannon, who has supported me throughout this process and spent hours reading my manuscript, giving me suggestions, and making this book a reality.

INTRODUCTION

I remember the day we met like it was yesterday. I was standing outside of our locked classroom door the first week of classes in the fall semester. He had his motorcycle gear on, and it reminded me of the attire race car drivers wear. He came over and started talking to me, and I thought, This guy is going to ask me out someday.

I wish I could say that this was the love of my life, that we fell in love, got married, and are still happy to this day. That was not our story. What was significant about this relationship, though, was something it brought to my attention. I am a firm believer in you always learn something from a relationship. What I learned in this particular relationship (besides not to trust a guy when he tells you he’s divorced) is that many of us have some issue in our lives that we think of as baggage; it’s what will make us unattractive or appear damaged to the opposite sex. For some guys it might be having a child, a crazy ex-girlfriend, no career path, or significant credit card debt. For Jared, it was his divorce. We had this kind of conversation many times:

But do you think you can be with someone who has been divorced?

Yes. I have a chronic, progressive disease that I am asking you to be okay with—I don’t have a problem with your divorce, I would say.

But it’s not the same, he would reply.

No, it’s not the same. Because really the divorce, if it was actually a divorce and not a current marriage, is something that will eventually be over. Even with a three-year-old son, of whom he shared custody, his ex-wife would only be a limited part of our life. In fifteen years, when his kid is eighteen, one might never have to see her again except for huge milestones such as birthdays, graduations, or a wedding. I wish I could put an ending point on my disease. I wish I could say, in fifteen years I’ll be perfectly normal, still walking around, and everything will be fine. I cannot say this.

He was adamant that his burden was much greater than mine, and even though he could deal with my situation, he never believed that I could deal with his. When I told him about my disease he researched it. I knew he would; he’s that type of person.

So when we sat down to talk about it, he said, I’m not going to ask you the basic questions; I already did research on that. I know what the outcome will most likely be, and I know, even as you become weaker, your brain and your mind will remain intact—you will still be you.

I wish I could remember what he asked me. I’m sure it had something to do with the future or how I would see someone being involved in my future.

After we broke up, I couldn’t stop thinking about this interesting state of affairs. I had spent sixteen years believing somewhere inside me, even if I didn’t outwardly admit it, that no man was ever going to be able to accept my condition and what that meant for my, and our, future. It’s not that I don’t accept it for myself. I do. I accept that I’m living with this; I accept that I will have to keep fighting a losing battle; I accept that it’s okay to be scared about my future. I accept that if and when I end up in a wheelchair I will be sad and feel as if I’ve lost my independence. But I still couldn’t accept that someone may choose to spend his life with me when this is my fate.

I was honestly okay with the divorce. Obviously, it could complicate our relationship a bit, and it might make some situations more difficult, such as holidays or disagreements on parenting techniques. There would most likely be situations that would make me unhappy, but I could look past that to be with someone who was as amazing as I thought he was. It just wasn’t that big of a deal to me. I was actually a little excited that he had a son. I realize that many guys might want at least one biological child, and if I couldn’t give that to him, it would be okay because he already had his son.

I am stronger than you think I am, I would tell him.

Even though I disagreed about the severity of baggage a divorce was, I understood where he was coming from. It’s exactly how I feel; despite what people say, they won’t really be okay with it. I realized, from this not ideal relationship, that if I was honestly okay with something he thought was such a big deal, it could be possible that guys I’ve dated and the guys I will one day date will be okay with my circumstances just the same.

PART 1

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I stepped off of the T’s most crowded subway line, the Green Line, and onto Commonwealth Avenue on a hot June day in 2009. I had to walk a few blocks, but this was the closest stop to the hospital. I was familiar with the neighborhood, though I had never actually walked down this street until now; it was fairly close to my apartment. The houses were tall and close together, and the trees and the grass were very green. It was a nice area of Boston.

As I walked, I thought about the last time I had been to see a doctor. It must have been at least eight years ago—I used to go to the appointments with my mom. We went to yearly visits for a while, but eventually we realized there wasn’t much they could do, so we stopped going. An appointment that reminds you of all your limitations but can offer no help is extremely depressing.

I spotted the hospital ahead. It sat at the top of a fairly steep hill. Great, I thought. Who puts a hospital at the top of a hill? Especially in a city where everyone walks. The hospital wasn’t big, but it had all the features you recognize in a hospital: an ER sign, sliding glass doors at the entrance, and lots of parking.

I hiked up the hill, slowly, cautiously. The sweat started to form on my back, and I was tired from work and from walking. The way simple physical activities drain me is frustrating. I finally reached the top of the hill and entered through the automatic, sliding double doors.

I have never liked hospitals; they smell too clean, and you can’t help but think about blood and sick people. Not that I have spent much time in hospitals—mostly just visiting my dad, who works in one. Still, I was not thrilled to be there. I was glad to be alone; I would rather have it that way; no one to see me if I break down.

The hospital was not very busy, just a few people walking with determination and purpose. It’s funny how someplace that is supposed to help you can feel so empty and cold. I walked to the directory on a nearby white wall to figure out where I needed to go and continued to walk down the light blue hall. My shoes made a light squeaking noise on the tile floor as I walked. I spotted an elevator and got on just to go up a couple of floors. Stairs are never easy for me. I avoid them whenever possible.

Good afternoon, the receptionist greeted me as I entered the correct wing.

Hello, I’m checking in for my appointment with Dr. Kurt, I replied.

Certainly, just take a seat, and he will be right with you.

I didn’t sit. I never do. I wonder if people think I am being rude when I’m standing around in waiting rooms. Sometimes, I even read a magazine standing up. People must think I’m weird or