Real Life Diaries: Living with a Brain Injury

By Lynda Cheldelin Fell, Brenda L Kleinsasser and MaryKay Schreiner

What really happens in the aftermath of a brain injury? Why can’t doctors give definitive answers? Will life ever return to normal? In Living with a Brain Injury, fourteen victims and caregivers invite readers inside their own intimate journey and expose a tender array of emotions, fears, and hopes. Along the way they offer truthful—

• Language: English
• Publisher: AlyBlue Media
• Release date: Mar 20, 2017
• ISBN: 9781944328689

Lynda Cheldelin Fell

LYNDA CHELDELIN FELL is an educator, speaker, author of over 30 books including the award-winning Grief Diaries, and founder of the International Grief Institute. Visit www.LyndaFell.com.

Book preview

Real Life Diaries

LIVING WITH A

BRAIN INJURY

True stories by survivors and caregivers about facing life and finding hope in the aftermath of a life-changing brain injury

LYNDA CHELDELIN FELL

with

BRENDA L. KLEINSASSER

MARY KAY SCHREINER

FOREWORD BY LAUREN VANDAL

Real Life Diaries

Living with a Brain Injury – 1st ed.

Lynda Cheldelin Fell/Brenda L. Kleinsasser/Mary Kay Schreiner

Real Life Diaries www.RealLifeDiaries.com

Cover Design by AlyBlue Media, LLC

Interior Design by AlyBlue Media LLC

Published by AlyBlue Media, LLC

Copyright © 2017 by AlyBlue Media All rights reserved. No part of this publication may be reproduced, distributed or transmitted in any form or by any means, without prior written permission of the publisher.

ISBN: 978-1-944328-66-5

Library of Congress Control Number: 2016911707

AlyBlue Media, LLC

Ferndale, WA 98248

www.AlyBlueMedia.com

This book is designed to provide informative narrations to readers. It is sold with the understanding that the writers, authors or publisher is not engaged to render any type of psychological, legal, or any other kind of professional advice. The content is the sole expression and opinion of the authors and writers. No warranties or guarantees are expressed or implied by the choice to include any of the content in this book. Neither the publisher nor the author or writers shall be liable for any physical, psychological, emotional, financial, or commercial damages including but not limited to special, incidental, consequential or other damages. Our views and rights are the same: You are responsible for your own choices, actions and results.

PRINTED IN THE UNITED STATES OF AMERICA

Living with a Brain Injury

DEDICATION

This book is dedicated to all those

who live with a brain injury.

DEDICATION

FOREWORD

PREFACE

The Beginning

Facing the Aftermath

Understanding the Prognosis

Reactions by Others

Understanding Sensory Changes

Being Informed

Our Personality Changes

Emotional Outbursts

Braving Social Stigma

Transition of Relationships

Facing Social Situations

Managing Engagements

Our New Routine

Behavioral Changes

Confessing Our Struggles

Memory Challenges

Confronting the Darkness

The New Normal

Finding the Silver Lining

Making Peace with Our Journey

MEET THE WRITERS

THANK YOU

LYNDA CHELDELIN FELL

BY LAUREN VANDAL

FOREWORD

Brain injuries, whether acquired (ABI) or traumatic (TBI), are as individual as the person sustaining them. They are like fingerprints in the sense that on the surface, at a glance, they look similar, but search a little deeper and you’ll find that no two are alike. Even injuries that have affected the same part of the brain in the same way are different.

There can be some very visible consequences from sustaining a brain injury including loss of speech or being unable to walk. There is also an overwhelming undercurrent of invisible consequences such as depression, anxiety, and posttraumatic stress. Shortly after my own traumatic brain injury, I was told that there is more known about outerspace than about the human brain. This gives you an idea of just how complex and misunderstood the brain is, and how there are a myriad possible consequences from injury. Therein lies the problem. No definite prognosis can be given, so medical staff tend to err on the side of caution, and this can make things seem very bleak indeed. Factor in lack of consistency with rehabilitation, and it gets scary and confusing and, at times, somewhat hopeless. Brain injuries are extremely common. In the United Kingdom, where I live, a brain injury is acquired every ninety seconds, and yet they are never talked about openly unless a celebrity sustains one. Just as no injury is identical to another, the healing process is also completely individual. It is also a long slow slog to recover from. As a survivor, I know firsthand the puzzled looks other people give you when they wonder why, three years later, that you’re just not better yet. Brain injury survivors start to exist within a very quiet and lonely bubble. We live in a quick-fix society with an injury that is most definitely not a quick fix.

There is one thing for certain: a brain injury, whenever and however it strikes, feels like a ripping apart of your life and yourself. There are people in this book who have known nothing but brain injury, having acquired it at a young age, as well as people who have had this thrust upon them later in their lives. Regardless of when it occurred, the commonalities are the same: the struggle to adapt, the feeling of loss and the isolation it can bring. I dealt with my injury by writing a blog, and it’s shown me just how powerful sharing stories can be, how writing words can bring hope and comfort. That’s why this book contains within it some serious mojo booster! It shares pain, hope, disappointment, grief, joy and love, and it gives us all a sense of connection, of community. We heal when we come together.

This book hopes to share our triumphs and struggles to show people they are not alone. It can serve as a helpful tool for caregivers of brain-injured loved ones, and it spreads understanding among those who may not have been touched by brain injury. This book will be the friend that is still there years later when the world has moved on to other things and you’re still learning and changing. If you have sustained a brain injury or are a loved one or caregiver to someone with a brain injury, or a medical professional, a support worker, an employer or a friend, the stories contained within will enable you to talk about the truly silent epidemic of brain injury and allow us survivors to continue to find and shine our light once more.

LAUREN VANDAL

www.braingirlandcat.com

BY LYNDA CHELDELIN FELL

PREFACE

One night in 2007, I had one of those dreams, the vivid kind you can’t shake. In the dream, I was the front seat passenger in a car and my daughter Aly was sitting behind the driver. Suddenly the car missed a curve in the road and sailed into a lake. The driver and I escaped the sinking car, but Aly did not. My beloved daughter was gone. The only evidence left behind was a book floating in the water where she disappeared.

Two years later, on August 5, 2009, that horrible nightmare became reality when Aly died as a back seat passenger in a car accident. Returning home from a swim meet, the car carrying Aly and two of her teammates was T-boned by a father coming home from work. My beautiful daughter took the brunt of the impact and died instantly. She was fifteen years old.

Just when I thought life couldn’t get any worse, it did. My dear sweet hubby, Jamie, buried his grief in the sand. He escaped into eighty-hour work weeks, more wine, more food, and less talking. His blood pressure shot up, his cholesterol went off the chart, and the perfect storm arrived on June 4, 2012. Suddenly and without warning he began drooling and couldn’t speak. My 46-years-young soulmate was having a major stroke.

Jamie survived the stroke but couldn’t speak, read, or write, and his right side was paralyzed. Still reeling from the loss of our daughter, I found myself again thrust into a fog of grief so thick, I couldn’t see through the storm. Adrenaline and autopilot resumed their familiar place at the helm.

In the aftermath of losing Aly and my husband’s subsequent stroke, I eventually discovered that swapping stories helps us feel less alone. Our written words become a portable support group for others; it’s comforting to know others understand the shoes we walk in and the challenges we face along the way. And thus, Grief Diaries and Real Life Diaries was born.

Helen Keller once said, Walking with a friend in the dark is better than walking alone in the light. This is especially true in the aftermath of a life-changing experience. If you have a brain injury, or love someone who lives with one, the following true stories are written by courageous people who share your path and know exactly how you feel. Although no two journeys are identical, we hope you’ll find comfort in our stories and the understanding that you aren’t truly alone, for we walk ahead, behind, and right beside you.

Warm regards,

Lynda Cheldelin Fell

CREATOR, REAL LIFE DIARIES

www.LyndaFell.com

CHAPTER ONE

The Beginning

The thing that is really hard and really amazing is giving up on being perfect and beginning the work of becoming yourself. -ANNA QUINDLEN

Because every story starts at the beginning, and to help you fully appreciate the different perspectives throughout this book, we begin by sharing the starting points of our own journeys—the pivotal moments when each life became divided into before and after.

*

LYNDA CHELDELIN FELL

Lynda’s husband Jamie suffered an embolic

stroke resulting in aphasia in 2012 at age 46

The stroke happened less than three years after losing our fifteen-year-old daughter, Aly, in a car accident. Not handling the grief well, my husband bottled up his emotions tightly inside. He couldn’t even say our daughter’s name.

Our family is very close. Every morning, Monday through Saturday, my husband, Jamie, dropped Aly off at the swimming pool. A year-round competitive swimmer, she had high ambitions which meant many hours at the pool. Every day at 5 a.m., Jamie drove Aly to the pool for the first of twice-daily practices. They shared a deep love for classic rock, which they enjoyed listening to on the way to the pool. It was a special father-daughter time that Jamie treasured deeply.

But it all came to an abrupt end on August 5, 2009. Late that night, as a handful of senior swimmers were returning from watching Michael Phelps compete in an Olympic qualifying meet in Seattle, their car was T-boned at high speed by a father returning home from work. Sitting in the back seat, our daughter bore the brunt of the impact. She died instantly.

My husband began spending longer hours at work, up to eighteen hours a day. He was smoking more cigarettes, and drinking more in the evening to unwind after work. His eating choices focused on comfort food rich in flavor, calories and cholesterol. Jamie’s bottled-up grief, along with his combined risk factors, laid the foundation for the perfect storm.

On June 4, 2012, Jamie and I had just returned home after running errands. He went out to his workshop and I was sitting at the computer in our home office. Through the big picture window, suddenly I saw Jamie come around the corner of the house toward the front door. He had a strange look on his face. I got up from the chair to open the door and immediately noticed that he was drooling. Seven years as an EMT instinctively took over. I asked him if he was okay and he replied with a long, drawn-out Noooo. In quick succession, I asked him two more questions. What is your name? What day is it? Both times he replied with the same answer: Noooo. It was the only word he could say.

I immediately sat Jamie down on a patio chair just outside the door. Quickly but calmly I told him he was having a stroke and I needed to call for an ambulance. I was in high gear as I rushed inside to grab the phone. I dialed 911 as I returned to his side; I wanted to be sure to catch him if he fell off the chair. I barked out orders to the dispatcher: our physical address, my husband’s age, no speech, drooling—hurry! As I waited for the ambulance, I held Jamie in my arms and calmly told him it would be okay. He didn’t move, but I knew he could hear me. I reassured him that the ambulance would be only a few minutes, and everything would be okay. I needed to say those words to reassure us both.

The medics arrived and packaged Jamie up in what felt like seconds. Not wanting to be separated, I hopped into the medic unit. The driver gave me a startled glance, but didn’t say a word. Off we went, code red. On the way, I answered the medic’s questions and also sent a text to my sister Patti, asking her to get Shaun, our fifteen-year-old son, from school and meet us at the hospital. We arrived at the same time. Shaun, seeing his dad being unloaded from the medic unit, came running full speed toward us. Dad! he yelled with panic in his voice. They had been the best of friends; his dad was his rock in the aftermath of losing his sister. Strapped to the gurney and now paralyzed on his right side, Jamie couldn’t do much, though he managed to give Shaun a reassuring thumbs-up. That was the last time our son would smile for a very long time.

In the emergency room, testing confirmed a major embolic stroke. Doctors recommended a clot-busting medication, but they warned me that it came with a twenty percent risk of bleeding and death. Alarmed at such a high risk, I was hesitant. Finally, I asked the doctor, What would you do if it was your wife? I wouldn’t hesitate, was his reply. I agreed to proceed. The medication was administered and we prayed it would reverse some of the damage. Now only time would tell.

My large family had gathered in the hospital to support us and to pray. Jamie couldn’t speak and his right side was paralyzed. His brain began to swell from the damage, and he was now unconscious. At one point, I was alone with Jamie in his room there in the ICU and I remember laying my head down on the bed sobbing my eyes out. Losing our daughter less than three years before was still very fresh, and now I risked losing my dearly beloved soulmate. My rock. My knight in shining armor. A wonderful husband and father, we had enjoyed a lively and affectionate marriage. I crumbled. My dam had burst. Despite the prayers and love surrounding us, I felt scared and utterly lost. With my head resting on the hospital bed, I sobbed into the bedsheets. At that very moment, while still unconscious, Jamie lifted his left arm and laid it gently across my shoulders. I’ll never forget that moment. It was his way of saying he could hear my heart breaking for the second time in my life.

*

LIANE DALTON

LiAne suffered two grand mal seizures and

a hemorrhagic stroke in 2009 at age 50

My husband, Steven, and I love Christmas and the holiday season. Little did we know that December 2009 would be unlike any holiday season we had ever shared. As the month began, everything felt a little off. I had been ill through the Thanksgiving holiday and still did not feel right. Steven was preparing to take a five-day business trip to Klamath Falls, Oregon, without me. 

On or about December 15, I started what would turn into a ten-day migraine. Each day the pain worsened. Each day it became harder to be in bright light or listen to loud sounds. Nothing helped. I was drowning in pain and felt so guilty that I was not able to help Steven get ready for Christmas. When Steven returned, I was in bed almost twenty-four hours a day in the dark with a pillow over my head. I was going out of my mind with pain. I started vomiting, and could not keep any of my medications down.

On Christmas Eve, Steven took me to my doctor who gave me an injection of strong narcotics for my head. In the past, just such an injection had worked when nothing else did. But this time I got no relief. Christmas morning my head and legs felt very heavy. I felt like I was trying to walk underwater. There was a roaring sound in my ears. The pain was blinding. I was barely able to get out of bed and walk to the refrigerator. I got an ice pack and took it back to bed. I remember Steven being upset with me. He wanted Christmas and I was letting us down. I barely remember getting back into bed before everything went dark.

The next thing I remember is being surrounded by a group of hostile men. It did not feel like they were in my bedroom to help me. They kept repeating my name in an angry manner. I did not understand why they treated me the way they did. I kept going in and out of consciousness. The medics asked me to get out of bed, walk out of my second-story home, down a flight of stairs and to their ambulance. I tried, but could not support myself. I collapsed and again lost consciousness. I later learned that the medics did not turn their siren or lights on until after I had suffered a second seizure inside their ambulance. In the days to come, neighbors told me that they watched how I was treated and carried out of my home. They heard my screams and saw me struggling to get free. They could not believe that I was not placed on a stretcher and treated more compassionately. I have no other memories of that day. The next day I regained consciousness and Steven told me I had stroked.

*

STEVE DALTON

Steve’s wife LiAne suffered two grand mal seizures

and a hemorrhagic stroke in 2009 at age 50

It was mid-December. The sights and sounds of Christmas were everywhere. It was our favorite time of the year. I was preparing to leave town on a five-day business trip. At the same time, LiAne began a ten-day migraine. It was not her first migraine, and we both expected it to respond to her routine medical protocols. We had no clue what was coming. As we said our goodbyes, I knew something was wrong. My inner radar was off the charts, but I ignored it. I will always feel guilty for leaving LiAne alone and hurting for five days. I will always wonder if her stroke could have been avoided had I stayed home.

When I returned home she was worse. She had barely managed to care for herself in my absence. She had not eaten, was vomiting, unable to keep her medications down, and was confined to bed, writhing and crying in agony. With only days left before Christmas, I made a futile effort to bring some holiday cheer into our home. I bought a turkey and trimmings. We didn’t have a tree or any presents. I spent those last nights before the holiday alone, sitting in the living room listening to LiAne cry in her sleep. It was very unnerving and unsettling. There was nothing I could do to comfort her. I gave up on the notion of our having any kind of Christmas. I was very worried and sad. Looking back, I feel like I was so selfish, feeling sorry for myself while my wife was suffering and her life was in danger.

On Christmas Eve we went to her doctor. He gave her an injection of strong pain medication. This treatment had worked in the past under the most severe conditions. When we got home from the doctor’s office, she went straight to bed with ice packs and pillows over her head. The room had to be completely dark and silent. I remained at her bedside for periods of time and then sat in the living room, feeling more blue with every passing hour. Part of me wrongly blamed LiAne for ruining Christmas, and that made me feel guilty and worse. I made a fire and sat alone with my dark thoughts, jumping up and running to the bedroom when I would hear LiAne cry out. She was crying in her sleep, but I did not disturb her. Her suffering seemed worse when she was awake.

Late Christmas morning, LiAne woke up. I heard her in the bathroom. She walked down the hallway into the kitchen. She looked weak and not safe on her feet. She got an ice pack out of the freezer and started back to bed. I heard her say she wished she was dead. I was overwhelmed with worry and frustration. I have always been frustrated with LiAne’s chronic and incurable pain. I do not want to see her suffer, and if possible, I would take her pain and carry it. I would do anything to make her pain go away. But I can’t. I was helpless to alleviate her suffering. I did not want our life together to continue like this.

I followed LiAne back to bed and sat beside her. I knew that the shot the day before had not worked. This was the first time the shot had no effect. I knew something was seriously wrong and I needed to get LiAne to the hospital as quickly as possible. I had my hand on her head. I spoke softly and said we needed to get up and go to the hospital. The words had no more left my mouth when her eyes rolled into the back of her head and she started foaming at the mouth. Her arms and legs began shaking violently and uncontrollably and she tried to cry out, but I could not understand her. She made wailing sounds like you would expect from a wounded and dying animal. She had a grand mal seizure in my arms. I thought her wish to die had come true. I believed she was leaving me and all I could do was make a phone call for help. There was no help for this.

I had witnessed a stroke before and instinctively knew that was what I was seeing. I had to leave LiAne to get the phone and call 911. I raced back to her; she was still convulsing and moaning and foaming at the mouth. The 911 operator kept asking me if LiAne was breathing. She was. I rolled her gently onto her side and kept her airway open. I counted her breaths per minute. I wiped the foam and saliva from her face. I talked to her, but she could not hear me. The seizure lasted close to ten minutes. I kept asking the operator where the ambulance was. I kept waiting to hear a siren in the distance. It seemed like it took forever.

When the medics arrived, LiAne had stopped seizing. The medics hadn’t witnessed the seizure, and doubted the history I gave them. They saw that LiAne was on more than a dozen medications, and I believe that at first they thought she had overdosed. Instead of rushing her to the hospital as part of a proper stroke protocol, they took time to ask her questions she could not answer. They wanted me to give them a list of all her medications. Sometime during this ordeal, I went outside and called my oldest brother for help. I ruined his Christmas. His family was so wonderful to get him down to Portland that evening. He dropped everything and came running when I needed him. I do not remember what I said to him. While outside talking to my brother, I remember seeing our neighbors looking up at me with worried looks on their faces. The street was full of emergency vehicles.

Finally the paramedics agreed to transport LiAne to the hospital. If time is truly of the essence during a stroke, then these dear and wonderful first responders really dropped the ball with my wife. They took their bloody time, and when they got ready to exit the house, they asked LiAne to try to walk to the ambulance! Can you believe it? She could not walk and was very confused. She did not know she had suffered a seizure. She was scared. Our dogs had been thrown into the bathroom to get them out of the way, and they were scared and barking loudly, adding to the drama.

The medics would not bring a stretcher. Instead they carried LiAne out the door and down a flight of stairs in their cupped hands, forming some kind of makeshift fireman’s chair or seat. LiAne kept looking at me for undertanding and help. She started fighting the paramedics, trying to get free. I tried to reassure her, but my voice and presence were lost in the confusion and chaos. I stood back at the top of the stairs while they carried LiAne away. Later our neighbors told us they could not believe what they had seen with regard to how they brought LiAne out.

I told the paramedics to get her to the emergency room and that I would be there as soon as possible. I had to make the house safe first. I went as fast as I could. I turned the oven off and left the turkey in it. I grabbed a big pan and started dumping gallons of water on the fire, making a huge mess. I did not care, I just wanted the fire out. I put down extra water and food and let the dogs out of the bathroom. The first thing they did was search the house for LiAne and then start whimpering when they could not find her. They knew something was very wrong.

Once in the emergency room, LiAne was placed in a bed and hooked up to countless wires and machines. Nurses and doctors ran back and forth while I tried to sit out of the way. My right leg began shaking and would not stop. No one noticed, and that was fine with me. LiAne was unresponsive, but awake. She would not stop fighting to get out of the hospital bed, and she was hurting herself in the process. I can’t tell you how I felt when the doctor asked for, and I gave, permission to restrain her for her safety. I felt like I had just betrayed my wife.

For hours I sat there beside her, waiting for her to come back; waiting for her to talk, say my name. I put my hand on her head. I held her hand. I kissed her cheek and forehead and whispered words of love into her ear. I tried to hold her. I prayed over her. I wanted to lie beside her. Several hours after arriving at the hospital, doctors confirmed what I already knew. LiAne had suffered a hemorrhagic stroke on the left side of her brain. I wandered the hospital alone, dazed and in tears, until my sister and her husband arrived.

I was not allowed to remain with LiAne that first night. When I went home, she was in a coma-like state. Her eyes were wide open but she was not there, she was not anywhere. In a matter of seconds I had lost everything that meant anything to me. I had lost my best friend, my soulmate, my lover, my companion, my wife, the one person I expected to spend eternity with. I went home to a cold, dark house with no life or light in it. I left my wife not knowing if she would come back. The tears flowed until the sun came up, and my leg would not stop shaking. I was scared to return to the hospital. I did not know what I would find.

*

NANCY FABIAN

Nancy suffered a traumatic brain injury

from a motorcycle accident in 2011 at age 51

My husband had always had a motorcycle and had asked me several times to get my motorcycle license so we could ride next to each other. We owned a Honda Goldwing, and I was very happy just sitting there looking at everything. I kept putting it off and telling him I didn’t think it was a good idea for me to get a motorcycle license. Finally I agreed to try. I enrolled in a licensed two-day class so that I could get the correct instructions on how to ride, because I had never ridden before. The class was being held in Greeley, Colorado, which is about a two-hour drive from our home. We made arrangements to stay with some family. I prepared myself and all my required items: boots, coat, gloves, helmet, which are things I’ve never ridden with before. I thought how stupid that all was, because it’s going to be ninety degrees out there.

I arrived at the class, filled out all the required paperwork and got ready to learn. We immediately went and got on the motorcycles. The one that was given to me to use was a Honda 650. It was cool in the morning so even wearing the coat, boots, gloves and helmet, it wasn’t too uncomfortable. The fear in me was starting; I kept thinking, what am I doing? I got going and went straight really well and stopped at the end of the parking lot. I got off, turned the bike around and rode it back. I thought to myself, this isn’t so bad, I can do this! We then graduated to doing large circles and again my fear took hold. I took it slow and did it. I beamed from ear to ear. We practiced these skills the rest of the day. I went home that night and thought how awesome this was going to be, riding next to my husband rather than behind.

I got up the next morning, put on all my gear and headed back to class. I thought I would be walking out of the classroom that evening with my license. The second day turned out to be much more intense. We started with a review of riding like we did the previous day. I did great. We then moved on to doing weaving between the cones. I took my time, and after a few attempts I got it down. I did it! Next we were learning about making figure eights. The turns through the cones were stressful, but I did finally do that, so I thought, I can do this too. I went slow but couldn’t get the hang of it. I tried several times and just couldn’t get the motorcycle to turn the way I wanted it to. I stopped and watched the others do it. I thought to myself, if they can do this, it really can’t be that hard and I can do it. I got back in line with the other classmates and motorcycles. My turn was coming up. I kept telling myself that I could do this. I started to take off, made it through the set of figure eights. I was so proud. I drove back into line to do it again, practice, practice, practice. The second time was just like the first except a little more smooth. The next round didn’t go anywhere near the same. I started off well, turned right, went to turn back left and then I lost control and went down.

*

BRENDA KLEINSASSER

Brenda suffered a right frontal lobe

meningioma in 2008 at age 48

Several years before my diagnosis, I experienced a head injury by bumping it in the fridge, as I had leaned in too far. I did not get knocked out, so didn’t see any reason to get it checked out. Not good advice ever! It really hurt, and I thought I had bruised it real good. It got better, and then started to hurt. I had it checked out several times, once by my primary care physician who did a skull x-ray, but nothing was found. He gave me something for pain, but I had to stop taking the medication because it caused severe muscle aches. What I did not realize at the time was that the medication he prescribed is also used for seizures. Another time, shortly after my father passed away from Alzheimer’s in 2007, I went to see a neurologist. It felt like my head was inflamed, but all he did was send me home with some exercises. I went home and started doing them, because I wanted some relief from this awful pain.

Something else happen to me which was strange and quite frightening. One night I got up to go to the bathroom and when I returned to bed I tripped on something and remember falling in slow motion. I don’t remember anything else except that I ended up on the floor flat on my back. I have no idea what happened. I don’t even know how long I was there, whether I had blacked out, or possibly even had a seizure. I hadn’t looked at the clock before I got out of bed, so I have no idea how long this whole event lasted. I was alone, and it truly was frightening. I didn’t bump my head that time, as there was no sign of injury. Regarding some of these events that happened, I am not sure exactly when they transpired because I wasn’t journaling at the time, so I have no way of knowing the exact timeline. Getting back to my visit with the neurologist, he said I could have a CAT scan or CT done, but nothing was likely to be found. Little did I know that something was lurking in there.

The next year the pain was getting worse and it was becoming more difficult to concentrate. My blood pressure was also sky-high and very concerning to one of my physicians. I also noticed that when I looked up suddenly, my head would start to feel funny and nausea would set in. Part of the problem was finding the right blood pressure medication. It took three tries, and by the time they found one they also discovered that I did not need to take the whole pill at once, so they were cut in several pieces. Again, some of my details are not clear. That is part of what happened to me. I know these events occurred, but I’m not really sure of the order.

Another thing that happened a year prior to my diagnosis was a change in my personality. I was not dealing well with my father’s illness and the toll it had to be taking on my mother, so I would get angry or cry very easily. One physician took it upon himself to prescribe me something to help cope. All it did was cause me to gain weight, and my ability to feel emotions was completely gone. I did not shed one tear at my father’s funeral. People must have thought I didn’t care. In retrospect, I had experienced the long goodbye months before his death. Finally, I got off that medication and started to feel emotions once again.

I have always been proactive about my health, so I asked for a CT scan. I was told not once but twice by the nurse if nothing was found, we were done. I had the CT scan, and lo and behold a mass was found on the right frontal lobe of my brain. I was not crazy after all.

At this point, no definitive diagnosis could be made so an MRI was the next step. When I went for the MRI, they asked whether I was claustrophobic. I didn’t know whether I was or not, but within six minutes I knew without a doubt that I was. I had to get out of there. I was devastated, and had to schedule the MRI for another day. I had it under anesthesia and did all right, except for getting sick afterward. I went back to my mother’s apartment and rested for the day and then returned to my apartment that evening. My doctor had left a message on my answering machine but when I retuned his call, his wife answered the phone and said they were having dinner and could he call me back? I said that would be fine. He called and said I had what is called a meningioma. I saw the neurologist and neurosurgeon the next week. A craniotomy was scheduled for September 8, 2008, four days from that visit. They figured it had been there for at least twenty years, as this type of tumor grows slowly. That would be the beginning of my brain tumor