I'm Good

By Olivia Gaynor

Ever wonder what it's like to have an invisible disability? How do you know if someone is disabled or faking? Is having a chronic illness the same for everyone? How does a chronic illness affect day-to-day life?

I'm Good seeks to answer these questions and more.

Olivia Gaynor's personal stories captur

• Language: English
• Publisher: New Degree Press
• Release date: Jul 27, 2020
• ISBN: 9781641377997

Book preview

Acknowledgments

I’d like to thank everyone who listened to me talk about living with chronic illnesses. Thank you for providing that first platform to explore my thoughts and feelings that led me to writing this book. I had the amazing opportunity to talk with some of my favorite chronic illness influencers like The Disabled Hippie & Lady of Lyme who took time out of their busy schedules to share their lives with me. Thank you to my amazing family and my amazing publishing family. I could not have created something so beautiful inside and out without the help from Eric Koester, Brian Bies, Karina Agbisit, and John Chancey.

For June, my forever best friend. You know what? I love you.

I encourage you all to recognize that disability is a family you can join at any point in your life.¹ — Judy Heumann

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1 TED, Our fight for disability rights — and why we’re not done yet | TED, October 2016, video, 15:58.

PART ONE

Introduction

Here I am, twenty-one and unable to get out of my own bed. My body is weak. My mind is strong, but it has great moments of weakness. Right now, it is feeling quite weak. When you’re living with chronic illnesses, there are times where your brain does not want to fight. That’s where I am now. My diseases have no timeline. They come and go at whatever strength and time they please. I have very few things that I have power over in my life since my diagnoses. They take over every aspect of my life and often make me feel helpless and alone. Writing is something that I can control. It gives me power.

To outsiders, my life is absurd and people are unsure of how I function day to day. Honestly, I’m unsure of how I function too. Somehow, I make it work. My story is my own, but it isn’t so different. Through my many interviews, time on Twitter, and support groups, I’ve found that my story is almost average.

This whole world of people may have different diagnoses but are going through the same struggles and finding their own ways to make it work. We are chronic illness warriors who often fight invisible battles. These battles are physical as well as mental. We fight to wake up in the morning, get dressed, take our pills, and simply survive. We fight perceptions that people have about us. Seemingly, we have it better off because people do not know we’re sick; we don’t look sick, which able-bodied people see as a perk. However, this lack of obvious illness causes all sorts of problems because we have to fight for both accommodations and for people to believe us. I’ve spent my whole life explaining my struggles to people, but I never get to speak in-depth about my lived experience.

Although I can’t control the diseases that live inside of me, I can control how I look at them and how I talk about them with others. I can frame my life in the way that I want to frame it. Many things are more difficult for me, but I manage it all well. I’ve learned how to balance my anxieties, fears, hopes, dreams, and reality. I’m writing this book because I think that my insights on how to cope with chronic illness can help other people. I purposely wrote this book in an accessible way because I want family members, friends, and anyone who knows anyone with a chronic illness to better understand what it’s like to live in a body like mine. A guest on the Invisible Not Broken podcast, Nitika Chopra once said, I’m a patient and I’ve built enough courage to try and push through all of my fears to see if I can help someone.² I am also a patient and I want to try and help others like me, but I also want to create something that even able-bodied people want to read.

People with chronic illnesses often face extreme isolation and loneliness. I, and others throughout this piece, will be here to continually remind you that you’re not alone. Statistically, six in ten American adults have a chronic illness and four in ten have multiple.³ You are not alone, even if it may feel like it at times. Chronic illnesses are complex and hard to explain, but my goal is to help you feel loved and cared for, while also helping you to explain your situation to those around you. Maybe you’re a loved one, and I’m here to support you too. This book is meant to give advice on a wide range of topics while also realizing that sometimes there is no right answer or right thing to say. Just know that there are so many people out there who understand what you’re going through and know the toll it takes on your body. You are not alone.

I want you to feel a sense of security as you read this. Whether you’re a patient, a parent of a patient, a best friend, or a significant other, I want this book to be there for you. You should read this book if you’re chronically ill, curious, or have a loved one who you want to better understand. Together, we will walk through my own journey with incredible stories from disability influencers, friends, and celebrities who are all struggling with us. We will talk about the intersectionality of disability, love, self-worth, mental illness, choices, the idea of good days, autonomy, and disclosure of disability. We will talk about these little moments that may seem insignificant to an able-bodied person but impact a chronically ill person in a large way. I can’t wait to share these stories with you.

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2 Nitika Chopra, Interview by Eva Minkoff, Invisible Not Broken, podcast audio, August 18, 2019

3 National Center for Chronic Disease Prevention and Health Promotion, Center for Disease Control and Prevention, U.S. Department of Health & Human Services, October 23, 2019

Background

I was born on January 21, 1998. I was supposed to be born in February. Honestly, nothing too exciting came from my birth. Well, that’s somewhat of a lie. All the doctors on staff that night were betting on me because my mom had previously had a c-section with my older brother. Once you have one c-section, you’re bound to have another. I decided I wanted to come out the old-fashioned way: straight from my mother’s vaginal canal. For the first time in my life, I fooled a lot of doctors. Unknowingly, this would be a recurring theme throughout my entire existence.

From there, things were kind of fine. I feel like every baby has some issues. As long as it isn’t cancer or organ trouble, it’s usually okay that the baby isn’t perfect. My baby issues were definitely second-tier problems. I had a little cornea surgery where, according to my family, I received banana scented anesthesia. I believe that banana anesthesia fueled my hatred for the fruit. I refused to eat bananas throughout my entire childhood. In kindergarten I was praised for bringing a banana as a healthy snack, but after receiving that compliment I threw it in the trash. Nothing could make me eat that dreaded thing.

After the cornea issue, I was diagnosed with baby colitis. From day one my stomach was having issues and the nightly suppositories and I became closer than close. At least after the diagnosis it was confirmed I was allergic to milk. Unfortunately, my mom was unable to produce breast milk to feed me. She had almost killed my brother from her lack of milk three-and-a-half years prior so I don’t even think she gave it a shot. However, my mom was reassured that this was just a phase and that I would grow out of baby colitis.

In this same period of infancy my grandmother, and future best friend, came for a visit. I seemed very happy lying on my back, not moving. I believe her exact words were, What’s wrong with her? Her tone was harsh but ultimately saved me. It turned out I had no muscle tone in my left leg. I used to drag that bad boy wherever I went. That gangly thing didn’t stop me from exploring the great wide world of my confined house. I was then started on my first physical therapy regiment at only ten months old. It would not be my last.

You’re probably thinking, This girl was messed up! Of course, she has all of these problems! Of course, she is chronically ill! It all makes sense. Apparently, it didn’t make any sense. Apparently, doctors couldn’t look at my charts and see that I was not a normal baby. No, I wasn’t cancer ridden or born with my organs outside of my body. In their eyes, I was okay. I wasn’t an emergency. But believe me, I wanted nothing more than to be okay and fit in.

Throughout my childhood, I played every sport imaginable. I played basketball on the boys’ team because they didn’t have one for the girls. I played baseball until fourth grade when my dad forced me to switch over to softball. When I look back, through all of my athletic endeavors, those moments were filled with fear. If I had to slide in softball, I would fall into a panic. Everyone else could do it, but for some reason I feared that if I slid the wrong way my body would shatter.

These moments should have been filled with pure excitement, but I was living with this anxious mind that wasn’t anxious for no reason. I was anxious to keep myself safe. I was anxious