I Still Dream Big: Stories of Teens Living with Chronic Illness

By Penny B. Wolf MSW

Kelly was a seventeen-year-old star of her high school basketball team

Gevon was a twelve-year-old who played linebacker for his middle school football team

Crystle was a nineteen-year-old college student with big plans for the future

One day youre hanging out with friends at the mall, playing basketball at school, dreaming about your latest crush, and the next youre in the hospital hooked up to tubes and wondering whether or not youll ever feel normal again.

Getting sick was never part of the plan.

Lupus. Diabetes. Rheumatoid Arthritis. Crohns. Multiple Sclerosis. No matter what the diagnosis, teens with chronic illnesses share one thing in common: their lives have been changed forever by illness. Seventeen young adults share their personal stories in I Still Dream Big. Their tenacity and spirit are an inspiration to us all.

The voices of the teens profiled in this book are filled with hope and optimism despite the very real challenges they face. While some of their goals may have changed, these kids still have high hopes and big dreams for the future. Above all, they refuse to be defined by illness. Seventeen-year-old history buff, Jamie, sums it up with these words, "You define yourself, not something written in a medical chart."

When someone gets sick, family and friends are affected as well. The stories of these seventeen teens are important, not only for teens with chronic illness, but for the people who love them and want so much to understand the emotional and physical challenges their best friends and loved ones face.

I Still Dream Big is a celebration of life and a reminder to all of us to hold onto our own dreams for the futureand to remember to DREAM BIG.

• Language: English
• Publisher: AuthorHouse
• Release date: Oct 29, 2009
• ISBN: 9781449030971

Penny B. Wolf MSW

Penny Wolf currently works as a freelance writer in Albuquerque, New Mexico. After earning her masters degree in social work, she began her career as a juvenile probation counselor in Austin, Texas. Diagnosed with lupus at the age of thirty-two, much of Ms. Wolf’s work for the past several years has been focused on educating and counseling individuals and families living with chronic illness. As a consultant for a chapter of the Lupus Foundation of America, she had the opportunity to develop a support group for teens living with lupus. It was the tenacity and optimism of these teens that inspired her to write this book. A native of Detroit, Ms. Wolf currently resides in Albuquerque, New Mexico with her husband, Tom.  

Book preview

© 2009 Penny B. Wolf, MSW. 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.

First published by AuthorHouse 11/18/2009

ISBN: 978-1-4490-3097-1 (e)

ISBN: 978-1-4490-3096-4 (sc)

Printed in the United States of America

Bloomington, Indiana

Contents

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The Butterfly Legend

There is a well-known Native American legend that has long been a symbol of hope.

The legend goes like this:

If anyone desires a wish to come true,

they must first capture a butterfly

and whisper that wish to it.

Since butterflies make no sound,

they cannot tell the wish to anyone but the Great Spirit.

So by making a wish and releasing the butterfly,

the wish will be taken to the heavens,

and it will be granted.

It is in the spirit of this legend that I have written this book.

Whisper your hopes and dreams to a butterfly … and don’t forget to dream big.

Author’s Note

A few years ago, I had the privilege of working with a support group for teens with lupus. Having been diagnosed with the same illness as an adult, I certainly knew what it was like to live with a chronic illness. What I didn’t know was what it was like to be a teenager facing this challenge. Of course, I was once a teenager myself, and, as I recall, those years can be hard enough without adding illness into the mix. But perhaps we are truly made stronger by adversity. I was so inspired by the kids I got to know—by their strength and tenacity—that I wanted to share their stories with others who might benefit from their experiences. That was the genesis of this book. In researching the book, I interviewed teens living with many different illnesses. I was often amazed by the eloquence and insight of their words. It has been an honor to travel this journey and a pleasure to get to know each of the individuals I interviewed. I only hope that this book does justice to their stories and yours.

Penny B. Wolf

For my husband and daughter,

who always inspire me to dream big.

Introduction

The teen years can be tough. There are expectations and demands coming from many different directions, and a lot of pressure to fit in, to be like all the other kids. Adulthood is right around the corner, and part of you can’t wait to be on your own, while another part still wants that safety zone of home. You love your parents, but they drive you crazy, too.

It’s a topsy-turvy world. Add a chronic illness to the mix, and you’ve got one really big pill to swallow. Suddenly, you are different from all of your friends. There are things that everyone else can do that you can’t. And just at a time when you are beginning to be more independent, you find yourself far more reliant on the support of your parents.

There’s no doubt about it—being a teen with a chronic illness isn’t easy.

I Still Dream Big tells the stories of seventeen teens and young adults living with chronic illness. Lupus. Diabetes. Rheumatoid arthritis. Crohn’s disease. Multiple sclerosis. No matter what the diagnosis, these young people have one thing in common: their lives have been changed forever by illness. Like you, they take medication every day, and some have had to make changes in activities and plans for the future. At the heart of this book is an important truth: although you may feel isolated at times by your illness, you are not alone.

The voices of the teens profiled in this book are filled with hope and optimism, despite the very real challenges they face. While some of their goals may have changed, these teens still have high hopes and big dreams for the future. Their message is clear—I am living with an illness, but illness does not define me.

No medical or psychological experts are quoted in this book, because the experts in this case are teens like you who are actually living with illness. I hope that as you read about these young people, you will see some of yourself in their experiences, and that their stories will remind you to hold onto your own dreams for the future—and remember to dream big.

Cast of Characters

Below is a Who’s Who of the teens and young adults about whom you will read on the following pages:

1. Alyssa, age nineteen, diagnosed with diabetes at age nine. Alyssa is now attending college, with a major in biology and a minor in dance. She plans to become a doctor specializing in treating pediatric diabetes.

2. Chelsea, age eighteen, diagnosed with Crohn’s at age eleven. Chelsea is now attending college and hopes to use her computer skills professionally to one day rule the world.

3. Crystle, age twenty-three, diagnosed with lupus at age nineteen and Sjogren’s Syndrome at age twenty-two. Crystle recently graduated from college and is working full-time while applying to graduate school to study social work.

4. Delaney, age fourteen, diagnosed with diabetes at age eighteen months. Delaney is attending high school and enjoys helping people and having fun with friends.

5. Gevon, age seventeen, diagnosed with diabetes at age twelve. Gevon just graduated from high school, and plans to pursue a master’s degree in business and run his own restaurant. He also hopes to become a successful R&B singer in his spare time.

6. Jamie, age seventeen, diagnosed with diabetes at age thirteen. Jamie just graduated from high school. She plans to attend college, travel the world, get married, and have a bunch of kids. She also hopes to one day work for the Juvenile Diabetes Research Foundation or the American Diabetes Association.

7. Joell, age fifteen, diagnosed with lupus at age eleven. Joell is attending high school and plans to study engineering in college. His e-mail address starts with scholar.

8. Kamila, age nineteen, diagnosed with lupus at age seventeen. Kamila is now attending college and hopes to become a counselor or social worker.

9. Kelly, age twenty, diagnosed with rheumatoid arthritis at age seventeen. Kelly is now attending college. A former high-school basketball star, Kelly plans to become a social worker.

10. Lindsay, age eighteen, diagnosed with diabetes at age six and Hashimoto’s disease at age sixteen. Lindsay is currently working in child care and plans to attend college to study some field working with children.

11. Mindy, age eighteen, diagnosed with optic neuritis at age fifteen, a diagnosis that was later changed to optic neuropathy. Mindy is currently attending college and hopes to become a sports reporter.

12. Miranda, age twenty-one, diagnosed with lupus at age eleven. Miranda just graduated from college with a degree in child and family development and hopes to find a job working with children in a hospital setting.

13. Rachel, age eighteen, diagnosed with diabetes at age nine. Rachel is now attending college, where she is pursuing a