When I was little, my life was a piece of cake. I loved to read and play soccer and hang out with my friends. I enjoyed playing the bells at church each Sunday. And I actually looked forward to school. My goal in life was to become a doctor like my dad, and I hoped to have a large family of my own someday. It seemed I was on the right track to achieve those goals—until my life took a turn for the worse.
It was Christmas of 1994, and I was 10 years old. After we finished opening our presents, my grandparents told me and my brother Mike that they had one last special gift for us. They gave us clues about what the surprise was: a golden lion, an emerald city, Greek gods, a large pyramid with cool hieroglyphics inside. Mike guessed it. The surprise was a family vacation to Las Vegas that spring! I was so excited. It was going to be a trip that we'd never forget. Unfortunately, that turned out to be all too true, and our lives would never be the same.
March came and we were off to Vegas. We were supposed to go hiking in the canyons, but I started to have flu-like symptoms. My mom and I stayed behind while the others headed out, and I lay down to rest. When I woke up, I could no longer talk and my right side was dragging like a dead fish. I was having a stroke.
I don't remember much about the next few weeks. I didn't understand what was going on and couldn't understand what people were saying. It was like waking up in a country where you don't speak the language. I was hooked up to machines and had tubes in my arms, and people kept sticking needles into me. The doctors ran tests and eventually discovered that I had a rare vascular abnormality called Moyamoya disease, which is what caused the stroke. I lived in the hospital for nearly three months. I couldn't speak or understand because of a condition called global aphasia, and I lost the use of the entire right side of my body. Nearly all of the left side of my brain was damaged.
One doctor recommended that my parents move me to a nursing home for the rest of my life. He said that it would be best for everyone since I would be permanently disabled. After staying with me for the first 10 days, my family had to go back home to Ohio. They had to get back to work and school. But my mom didn't go. She stayed by my side in the hospital. I knew she felt hopeless—and desperate for help. She was asking anyone she could for advice, but the doctors came in and out so quickly that it was hard to get any answers. She begged one doctor to tell her what he would do if I were his family member. He gave her this advice: "Stimulate, stimulate, stimulate—and fight!"
So we became fighters. It wasn't easy. I had to learn how to walk again. I had to learn how to talk again. I could use only one hand. Speech therapy taught me the tools and techniques to communicate in other ways. In the beginning, the progress was slow. I used word and image boards so I could point to what I needed. I had to learn simple words like yes and no. I got confused hearing simple questions like "Do you want some water?" Then I started to relearn single words to communicate what I needed: food, sleep, TV. Physical therapy helped me with my legs, allowing me to go from using a wheelchair to walking between parallel bars to using a cane. I had to learn how to write with my nondominant left hand in occupational therapy. My three-day trip to Las Vegas ended up being nearly three months of inpatient rehab. I continued outpatient therapy and rehabilitation for nearly 15 years.
Fast-forward to today. I can walk. I can talk. I can drive. I have many abilities. Things aren't as easy as before, but I live independently and try to have a normal life. I enjoy traveling, watching movies, and listening to podcasts. At times during my recovery, I was unsure if I'd ever be able to live on my own. But I have improved and adapted. Getting out of my comfort zone has helped my recovery, but it hasn't always been easy. Sometimes other people do not understand me. Occasionally, people have been cruel. In the beginning, some people thought I was drunk or dumb because of my aphasia. I hated that.
Now I travel on my own. I've visited foreign countries and figured out how to get around by myself. My independence and my ability to book complex itineraries are evidence of my recovery. Don't get me wrong. Many things are still an issue for me, such as my agraphia (writing difficulty), so I find tools to help me. For example, I used speech-to-text software to help me write this. I have difficulty putting sentences together and editing, so I use
that software to play back the words in order to find places where something's not right. I can hear—but not always see—what needs to be changed.
I tend to sleep a lot because the pathways in my damaged brain get overloaded. I get severe back and body pain from overworking my left side, which I still favor. I still have aphasia, and it's more pronounced when I am stressed or tired. However, all of those disabilities do not stop me from living my life. And yours shouldn't stop you.
My brother and I wrote Healing the Broken Brain to become guides for those of you who would like to join us. Whether you're a stroke survivor like me or a loved one of a stroke survivor like Mike, please know that you are not alone. We've been there, and so have millions of others. I've felt hopeless. I've felt lonely. I've felt scared, frustrated, confused, and angry. All stroke survivors have. But there's a reason they call us survivors. We're fighters—not victims.
On the last night of my hospital stay, my doctor gave me a watch as a going-away gift. When I looked at the face of it, I saw it had a soldier on it. She said, "Be a fighter." I wore that watch to remind me that I was in a battle. I was a fighter. I needed a battle plan. And so do you.
Our book is meant to help you in your fight. My brother and I talked to the top experts in the field of stroke recovery to ask questions on the behalf of stroke survivors and their family members. Stroke recovery is a marathon, not a sprint. You'll need different tools at each stage of the race.
The good news is that my life is still on the right track. It's just a different track than the one I imagined as a child. There's purpose in my life. I truly believe that somehow this is where I belonged the whole time: helping others find hope and see possibilities. Now I want to help others find the ways to achieve their highest potential and enjoy life. From the bottom of my heart, I believe that we can do this—together!
To those of you who are stroke survivors: Remember to take your recovery one day at time. There is so much to learn and so much to do. It can be overwhelming. Sometimes you'll feel like you just don't know where to turn. I spent many years feeling hopelessness and despair. Recovery is hard. But what I learned is that if I took tiny steps and built on that, I made progress. It was very slow and the progress was almost unnoticeable, but it was happening. At the same time, I was learning techniques that would help me adapt to—rather than overcome—my paralysis and communication difficulties.
Today, I am a founding board member of the Aphasia Recovery Connection, a nonprofit that works to help families dealing with the language difficulties I have struggled with. We have the world's largest support group for people with aphasia, do aphasia cruises (which I organize), and run an Aphasia University Boot Camp in Las Vegas. You can learn more about our nonprofit here.
Even if you don't make a full recovery back to your prestroke self (I didn't), aim for your own personal, optimal recovery—whatever that looks like for you. I hope that you too will have a recovery story with some silver linings.
Stay positive! I got through it, and I know you can too.
Excerpted from Healing the Broken Brain: Leading Experts Answer 100 Questions About Stroke Recovery by Dr. Mike Dow, David Dow, and Megan Sutton CCC-SLP. Published and distributed by: Hay House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Copyright © 2017 by Dr. Mike Dow Enterprises, Inc.