Where There is Breath, There is Life

By Susan Davis

“Karen and Susan’s story are a testament to the strength, commitment and love that defines their relationship. The “sudden event” of a ruptured brain aneurysm took them on a harrowing journey into hospitals, rehabilitation units, and care facilities. The title, “Where there is Breath, there is a Life”, defines the journey from the perspective of simply the act of breathing and the hope that life is still present. The word, ‘BREATH’, represents key concepts for the reader.B defines “BIG Crisis”: Aneurysmal Subarachnoid Hemorrhage (SAH) is a type of hemorrhagic stroke that is usually caused by a ruptured brain aneurysm. Twenty percent of individuals who sustain SAH from this cause perish within hours of the event...R defines RELATIONSHIPS: When an individual (patient) enters the hospital, a relationship is established with the health care team...E defines EMOTIONS: Loved ones of the patient may experience highs and lows in an hour or in a day....A defines ADVOCATE: Susan’s perseverance and dedication to Karen are evident throughout the journey....T defines TEAMWORK: Often most individuals refer to the health care team as the ones that possess teamwork....H defines HOPE: There are two mottos on the wall in the SICU. The first is, “Where there is life-There is Hope”! The second is, “NEVER GIVE UP...NEVER SURRENDER”.(From the Forward by Mary Kay Bader RN MSN CCNS FNCSFAHA Neuro/Critical Care CNS, Mission Hospital )

• Language: English
• Publisher: Adelaide Books Publishers
• Release date: Dec 15, 2018
• ISBN: 9781949180640

Susan Davis

Susan M. Davis graduated from California State University Fullerton with a degree in English. She has been an 8th grade English teacher for 27 years. She is a former Teacher of the Year. Susan also has a Masters of Science in Educational Counseling. She just completed her MFA in Creative Writing Non-fiction from Fairfield University in Connecticut. Susan resides in Southern California with her wife, Karen Kozawa and their 3 Cocker Spaniels. Her favorite color is purple. If you know her, you will know this.

Book preview

WHERE THERE IS BREATH, THERE IS LIFE

WHERE THERE IS BREATH, THERE IS LIFE

A memoir by

SUSAN M. DAVIS

Adelaide Books

New York/Lisbon

2018

WHERE THERE IS BREATH THERE IS LIFE

A memoir

By Susan M. Davis

Copyright © by Susan M. Davis

Cover design © 2018 Adelaide Books

Published by Adelaide Books, New York / Lisbon

adelaidebooks.org

Editor-in-Chief

Stevan V. Nikolic

All rights reserved. No part of this book may be reproduced in any

manner whatsoever without written permission from the author except in

the case of brief quotations embodied in critical articles and reviews.

For any information, please address Adelaide Books

at [e-mail]

or write to:

Adelaide Books

244 Fifth Ave. Suite D27

New York, NY, 10001

ISBN-10: 1-949180-64-6

ISBN-13: 978-1-949180-64-0

To Karen Kozawa, by partner, wife, best friend and soul mate. Life with you is filled with love and incredible moments. We create happiness in our home with one another and with our doggies: Benson, Joshua, Madi and Miles. May everyone create a blessed home life like ours. Love you my Bear.

CONTENTS

Foreword

Chapter 1—Day One

Chapter 2—Day Two

Chapter 3—Counting the Days

Chapter 4—Week One

Chapter 5—Numbers

Chapter 6—Warmth

Chapter 7—Movement

Chapter 8—Team Karen

Chapter 9—In the Sun

Chapter 10—Small Steps

Chapter 11—Rehab

Chapter 12—The Move

Chapter 13—Big Steps

Chapter 14—Freedom and Fear

Chapter 15—Home

Chapter 16—New Steps

Chapter 17—Therapies

Chapter 18—200 Days and Counting

Chapter 19—Challenges

Chapter 20— A Caring Bridge

Epilogue

Acknowledgements

About the Author

FOREWORD

by Mary Kay Bader RN MSN CCNS FNCS

FAHA Neuro/Critical Care CNS, Mission Hospital

Karen and Susan’s story are a testament to the strength, commitment and love that defines their relationship. The sudden event of a ruptured brain aneurysm took them on a harrowing journey into hospitals, rehabilitation units, and care facilities. The title, Where there is Breath, there is a Life, defines the journey from the perspective of simply the act of breathing and the hope that life is still present. The word, ‘BREATH’, represents key concepts for the reader.

B defines "BIG Crisis: Aneurysmal Subarachnoid Hemorrhage (SAH) is a type of hemorrhagic stroke that is usually caused by a ruptured brain aneurysm. Twenty percent of individuals who sustain SAH from this cause perish within hours of the event. The survivors are faced with countless potential complications and crisis that are known to commonly occur after SAH and threaten their lives. In Susan’s book, the natural course of the disease was evident as Karen’s body was affected in every organ system. Her brain suffered from increased pressure and the risk of rebleeding of the aneurysm while her heart and lungs experienced a shock similar to a heart attack. Once the aneurysm was sealed, the left-over blood in her brain produced irritation causing the 2-3-week period of vasospasm which can cause more strokes in the brain. Treating the vasospasm to avoid those strokes involve high risk procedures and require a highly advanced team of doctors, nurses, and technicians. This BIG Crisis" had Karen fighting for her life, the hospital team using every treatment option and skill to keep her from dying, and Susan watching from the bedside as all of this unfolded. Susan’s reflections of the days in the ICU describe the perilous and stressful minutes, days and weeks that patients loved one’s experience while patients are fighting for their lives! How do all involved function and provide the best environment to survive?

R defines RELATIONSHIPS: When an individual (patient) enters the hospital, a relationship is established with the health care team. The patient’s loved ones become part of the team. Personal connections between staff, patients and families/loved ones are key to establishing trust between all involved. Nurses spend the most time with patients and their loved ones at the bedside and when patients remain in the hospital for a long period of time, relationships continue to develop and mature. It is not uncommon for families of ICU patients to become part of the unit family when the caring relationships mature over time. The goal for all involved is to optimize the outcome of the patient. Sometimes the eventual outcome is not what all hoped for and staff feel the loss as greatly as the families. The transition to another level of care often results in a frightful time for the patient and loved ones. As Susan describes it is like leaving the womb. The relationships help ease that transition.

E defines EMOTIONS: Loved ones of the patient may experience highs and lows in an hour or in a day. The critical care unit cares for individuals who are critically ill and often unstable. When talking with the patient’s loved ones, the team will describe a roller coaster to define the various emotions that are experienced. Staff are present to support the patient and family. It is ok to be scared. Staff keep in the backs of their minds how frightened families can be of the known and the unknown. Listening and providing reassurance and communicating information honestly and as often as necessary are essential to help ease the ups/downs.

A defines ADVOCATE: Susan’s perseverance and dedication to Karen are evident throughout the journey. Susan is Karen’s advocate and will move heaven and earth to ensure Karen receives the best care. Advocacy is essential and every patient must have an advocate! The ADVOCATE questions and reviews what is best for their loved one. In today’s health care system, an advocate is important to maximize the outcome for their loved one.

T defines TEAMWORK: Often most individuals refer to the health care team as the ones that possess teamwork. While that is true, true teamwork is when healthcare teams, patients, and their support team (families/loved ones/friends) come together to implement the treatments needed for the patient to survive. A simple example is when a physical therapist (PT) provides range of motion (ROM) for the unconscious patient in the bed to promote mobility. The PT can teach the family and loved ones to do the same ROM as they are sitting at the bedside for hours. Susan, her mother/brother, and close friends/family comprised TEAM KAREN as their presence on a daily basis created the larger team of practitioners caring for Karen.

H defines HOPE: There are two mottos on the wall in the SICU. The first is, Where there is life-There is Hope! The second is, NEVER GIVE UP…NEVER SURRENDER. The TEAM works tirelessly 24/7 to provide the best care possible and are driven by hope that the patient will survive and have an optimal outcome. Families and loved ones pray and believe in hope. Without hope, a hospital would be a very dim place. It keeps us going in the direst of circumstances. Physicians use their incredible skills and talents to save lives. Sometimes, they deliver grave news when complications occur, such as Karen’s cardiac arrest. The physicians also provide an outline or path of treatment that hopefully will result in an improved outcome. The team of nurses and therapists believe and maintain hope that the outcome will be successful. Karen’s support team maintains hope throughout the entire journey. Hope she would survive! Hope she would return home! Hope that Karen would be Karen once again! Hopes do come true especially when someone has BREATH and Life!

Chapter 1

Day One

I needed to stay calm. I failed to call 911. Staying calm was the key. Haven’t we all been trained to dial 911 in an emergency? If I knew the symptoms, why didn’t I pick up the phone and call the paramedics?

On July 28th, 2008, in our perfectly planned community of Irvine, California, I woke up to the sound of vomiting coming from the bathroom on the second floor of our lavender-walled, wainscoted condominium. Wainscoting suits me well because I like neat and orderly things; I suffer from Obsessive Compulsive Disorder (OCD). Symmetry is my life. When things are aligned, I’m in order.

The noise was harrowing. Jolted from sleep, I heard loud vomiting. I ran down a flight of stairs to find my partner Karen hugging the toilet. She stood up.

Bear, what’s wrong? I asked.

I don’t know, Boo. I have this horrendous headache, and I can’t stop vomiting. My arms are tingling too.

Years ago, Karen and I met on Match.com. It seemed like an easier way to meet a new partner. I had been in seven other relationships, including a sixteen-year relationship where the woman brought me out at twenty years old. She was thirteen years older than I and married to a man with whom she had two daughters. It was a wild introduction to the gay world, and I remained her mistress until her husband found out we were together nine years later. She was a professional bowler. I wanted to become one too and asked her to coach me. Little did I know that I would be coached in more than bowling.

One evening I visited Match.com, and there she was--a gorgeous Japanese-American woman dressed in a black suit with thick black hair and a sassy short haircut. Her eyes gleamed at me through the screen. I was mesmerized. With a click of a button, a wink was sent to Tranquil Garden.

Signing back on to Match.com later, I found Tranquil Garden had winked back. I wrote to her that evening, and she wrote back. Our first date was P.F. Chang’s in Irvine, California. The second date was with a U-Haul. Lesbians do that. We meet and then move in.

Seeing Karen’s terrible condition that morning didn’t allow me to connect the dots, but the tingling in her arms was signal enough to get her to an emergency room. We had been together for four years, and Karen had never before complained about an illness except when she was diagnosed with Rhumatoid Arthritus in 2005.

I didn’t dial 911, too afraid of the idea of an ambulance coming to our home.

Instead, I ran back upstairs to brush my teeth. Never leave home without brushing your teeth. My parents’ voices still echoed in my head at the age of 50. In heading back downstairs, I failed to notice our cell phones charging.

On the bathroom floor, Karen’s small face was pressed against the tile. She was wearing her soft blue and green flannel pajamas. She was always cold--fragile like a bird--and wore flannel pajamas even in the summer. Her face was white, but that was all I noticed.

Bear, I said, can you stand up? I have to get you to the hospital.

Before she could answer, I grabbed cookies from the kitchen for our three cocker spaniels. Any time we leave home, the puppies each get a cookie. They lined up on the green carpet for their treats.

Running back to the bathroom afterward, I didn’t see Karen. She’d managed to get herself up off the floor to walk down the 15 stairs to the garage. I told the pups we loved them, locked their gate, and ran to the garage. Karen had grabbed a plastic bag. I don’t want to throw up in your car, she said.

She was always meticulous. At that moment, she seemed normal enough-- walking, talking, and considerate as always.

I’m going to lie right here in your backseat, Boo, she said.

She seemed in control of her movements, which I took as a good sign. I closed her door, got in, backed out of the garage, and drove to the automatic gates. I had never noticed before how long they took to open. With no cars around, I ran a red light at the corner and sped to the freeway less than two minutes away. The lush green trees lining the road swayed as we raced past them.

There were three hospitals nearby. The first had a bad reputation and so wasn’t an option. Karen’s aunt had been there just two months earlier, and the nursing staff wasn’t great. The new hospital across the street was an HMO, and we weren’t sure about the quality of care there either. The third hospital was down the freeway a bit. Then came Mission Hospital, where my brother worked as a computer tech. I felt I would need him with me as soon as we got there. He was a man of strength.

Bear, we’re going to Mission. Michael’s working today.

Good choice, Boo. I don’t think I can make it to Hoag. Hoag, another well-known hospital in Orange County, was far on the other side of town. It was amazing that Karen, even in the midst of a health crisis, could remember a hospital I hadn’t considered.

Running my second red light of the day, I merged onto the 405 freeway. It was Monday morning at 7:15 a.m. No traffic. God must have cleared the path for us.

My heart began racing, guilt raging inside of me because I didn’t call the paramedics. I was deathly afraid of ambulances and especially the stretchers inside of them--a huge phobia since childhood--I couldn’t handle dealing with the paramedics.

Boo, how’s the traffic? Karen asked in a normal tone.

There isn’t any.

We’re fortunate. I bet all the traffic is going north this morning.

Bear, grab my arm.

She grabbed my wrist and squeezed. Her grip was firm.

Love you, Bear.

Love you too, Boo.

After exiting the freeway, I turned left and ran another red light. At Mission Hospital, I took a sharp left into the parking lot at the large red sign: Emergency.

I sighed loudly. Bear, we’re here.

There was no answer from the backseat. The thought of Karen dying in the backseat of our car was not even an option. We had come so far together.

Hurry, go get someone, Boo. I can’t walk.

I ran across the parking lot to the ER, huffing and puffing. At least Karen was still talking.

The double doors opened, hitting me with a gust of cold air, and I yelled at the receptionist, My partner’s having a stroke. We need a wheelchair.

A young man with a wheelchair materialized, and I pointed toward the car. Over there--the burgundy BMW, Karen’s in the backseat. She’s been vomiting and has a horrific headache.

Frozen on the edge of the curb, I began to sob, warm tears wetting my cheeks. Though my vision was blurred, I spotted a sheriff exiting the ER to get on his motorcycle. I realized I needed to call my brother, whose office was just across the parking lot from where we were. I searched my purse and frantically patted my pockets. Then I realized that our cell phones were charging back at home.

I hurried over to the sheriff. Sir, I forgot my cell phone. I have to call my brother. My partner is in that BMW having a stroke.

What’s his number, Miss? he asked in a stern, deep voice. After I gave it to him, he dialed it quickly and handed me his phone. I was shaking and crying and nearly dropped it.

Michael, we’re at the ER. Something happened to Karen. I need you.

Susie, slow down. What’s wrong?

Always a fast talker, I forced my tongue to explain. Something happened to Karen. We’re at the hospital now.

I’ll be right over.

Thank you, I said to the sheriff, hanging up. Karen was being pushed toward me in a wheelchair. The attendant shouted as he pushed her across the parking lot.

He yelled, Head up! Keep your head up. You’ll aspirate.

Aspirate? What’s ‘aspirate?’ Stop yelling at her. I caught up with them at the double doors, which opened at once, sucking us in.

The attendant wheeled Karen over to the fish tank in the middle of the ER walkway. He stopped on the left side of the tank, which showcased blue and purple fish swimming calmly among green plants and colorful coral.

I ran to the admission desk. The receptionist slapped a clipboard on the desk. Fill this out, she said.

I wrote Karen’s first name on the pink top document and glanced at her. She was vomiting again. All of a sudden, she screamed, My head! My head hurts.

Her features contorted in pain, the color draining from her face. She scrunched up her features like someone who had just eaten a lemon. When I saw her dilated pupils, I thought, this is looking bad.

I threw the clipboard up in the air and shouted in my loudest, sharpest teacher’s voice, Help us! Can’t someone help us?

A woman from the waiting room ran over and grabbed my arm, Honey, you need to calm down--not only for you, but for her, too. I turned and saw a glimpse of her brown hair. You can go back with her, but you need to calm down. I wanted to smack her, whoever she was. This was my partner, and I was going to scream as loud as I could to get her help. Karen was the love of my life. She was my soul mate.

The door to the trauma unit flew open. The same male attendant came out and pushed Karen inside. Medical staff started running toward us.

What’s your name? one of the nurses asked Karen.

Her name is Karen! I yelled.

What’s your name? a nurse asked again, having received no response from Karen.

Her name is Karen! I repeated anxiously.

Her tiny head dropped to her left shoulder. She had fainted-- limp, helpless. I smelled that sterilized aroma that only hospitals have. People were rushing over and surrounding Karen in her wheelchair. I stood behind her, perplexed. She was no longer able to talk, I knew, but I didn’t fully understand what unconsciousness meant. My own breathing was fast and deep. I think I was breathing for both of us.

The team hustled Karen into a trauma room on the right.

In that moment, I realized they were asking Karen what her name was, to see if she could respond.

I stood still for a second, watching the commotion in front of me. Suddenly, I felt a sturdy hand rest on my shoulder. It was my brother Michael, dressed in khakis and a white shirt--his work attire. His was a protective hand, and I was instantly calmed by his quiet presence. Michael was my older brother by two years and the quiet winter to my loud summer. I trusted him.

I followed the nurses. People were yelling all around us, but thankfully, I couldn’t understand a word.

Where do you think you’re going? My brother grabbed my arm and pulled me back.

I’m going in there with Karen.

No, you’re not. You let those doctors and nurses do their jobs.

I’m going in there.

He turned me around with a firm hand and guided me through the thick steel double doors. We’re waiting out here, he said.

A nurse led us back into the hallway, where she set a chair next to an empty room. She prompted me to sit down.

What did Karen have for breakfast? What medications did she take? When did the vomiting and headache begin?

I couldn’t think straight but was surprisingly able to name all the medications Karen took for rheumatoid arthritis except one. I had no idea if Karen had eaten breakfast. I remembered giving the dogs their cookies, locking the gate, and deciding not to call the paramedics. OCD was beginning to kick in; it allowed me to remember details that most other people forget.

Stress crawled up my spine. Why didn’t I call 911? I knew why. Though I was fifty years old, ambulances still scared me to death. There was no way I would have called the paramedics even in a time of danger.

As I gave the nurse the information she asked for, Karen was pushed right in front of me. Medical personnel surrounded her gurney, and a blue bag covered her nose and mouth. They whisked her away.

I muttered, Love you, Bear, but this time, Bear couldn’t respond.

I sat motionless on the chair with Michael by my side. The trauma had begun at 7:15 a.m. It was just 7:45 a.m.

Within minutes, a doctor came out in scrubs and black-rimmed glasses.

Kozawa? he asked.

Right here, I responded. I’m her registered domestic partner, and this is my brother.

I’m Dr. Kim, the neurosurgeon. Follow me to the computer and I’ll show you what’s going on with Ms. Kozawa. We performed a cranial CT scan and found that she has suffered a brain aneurysm.

My brother and I stared at the images of Karen’s brain that Dr. Kim showed on the screen, noticing gray, black, and white areas. The aneurysm, said Dr. Kim, is located on the left anterior communicating artery. What is that? I knew what a brain aneurysm was, but I had no concept of where the left anterior communicating artery was, nor of the real devastation that had just taken place in Karen’s brain.

Dr. Kim looked at us pointedly. It doesn’t look good. Only thirty percent of the population survives a brain aneurysm of this magnitude. That means there’s a seventy percent chance Karen could die. We’re going to take her into surgery immediately. I need you to sign the consent papers.

Brain surgery? Seventy percent of the population dies from