Enduring the End: Surviving the Effects of an Illness on Marriage and Family

By Afton Zapata

No one grows up saying, I think Ill get sick, and spends the rest of their life trying to survive a constant battle between life and death. Instead, we grow up believing were invincible. We believe nothing bad could ever happen to us because we have hopes and dreams to fulfill. Theres never a good time to have poor health.
In 2002, my husband, Juan, contracted valley fever which disseminated into fungal meningitis, causing irreparable scarring on his brain. For nine years, our time was primarily focused on my husbands illness and disability. Our three children lived with the uncertainty of their fathers mortality. As a family, we learned to live as if each day was the last, but to have hope for the future. We made memories and made plans. There were times we didnt know if we could survive, but as a family we found the strength in God to stay together. We were blessed with many tender mercies from the Lord as we traveled what appeared to be an endless road.
We understood that even though our trials seemed long, they were merely a short segment of mortality, and that our lives will continue to exist beyond the grave. Most importantly, we learned that love heals all and serving one another is truly a blessing for ourselves. As a married couple, Juan and I witnessed countless miracles touch our lives as we exercised faith for enduring the end.

• Language: English
• Publisher: AuthorHouse
• Release date: Jul 12, 2012
• ISBN: 9781477225103

Afton Zapata

In 2008, Afton wrote Enduring Miracles which became the first half of her husband Juan’s struggles with illness and disability. She published this sequel Enduring the End as the second half of the illness, a tale of surviving the effects it has on a marriage and family. Afton is the mother of three children: Hillary, a sophomore in college, Zach, a sophomore in high school, and Greg, a seventh grader in junior high. After nineteen years of marriage, Afton now faces a new chapter in her life as a widow, but continues to find joy in the journey. Afton is a small business owner, teaches in Mesa Public Schools, volunteers in her community and serves in various church callings and opportunities. Afton began writing at an early age by keeping a journal. Through writing, Afton developed a voice that speaks to her readers. As she shares her joy in the little moments, despite the trials and hardships that are often associated with life, she inspires others to find joy as well. Through writing and speaking, Afton hopes to encourage individuals and families who deal with difficult challenges to continue in faith day by day.

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© 2012 Afton Zapata. 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.

Published by AuthorHouse 7/9/2012

ISBN: 978-1-4772-2509-7 (hc)

ISBN: 978-1-4772-2510-3 (e)

ISBN: 978-1-4772-2511-0 (sc)

Library of Congress Control Number: 2012910985

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Chapter 1 A Living Nightmare

Chapter 2 In the World

Chapter 3 Negligence

Chapter 4 Restitution

Chapter 5 On Trial

Chapter 6 Protecting Assets

Chapter 7 An Open Book

Chapter 8 Care Pages

Chapter 9 Medical Marathon

Chapter 10 Is This The Day?

Chapter 11 Decisions

Chapter 12 Home Sweet Home

Chapter 13 Stay the Course

Chapter 14 Lessons Learned

Chapter 15 New Resolutions

Chapter 16 Tragedy

Chapter 17 Family

Chapter 18 Declaration of Love

Chapter 19 Enjoy the Journey

Chapter 20 Enduring the End

Appendix

About the Author

Enduring the End

Surviving the Effects of an Illness on Marriage and Family

Afton Zapata

Author Note

In 2008, I published a memoir Enduring Miracles at the persistence of my husband but I didn’t feel like it was complete until I put him to rest. Juan’s will to survive inspired us to live every day as if his last but maintained a genuine hope for the future. After all, I couldn’t take away his determination to stay alive and raise our children together. Unfortunately, six months after my book was published our lives took an unexpected turn as our marriage and family faced another set of health challenges.

Enduring Miracles is about our family’s journey as my husband fought the effects of valley fever in his brain. Juan was diagnosed with valley fever meningitis in 2002. The fungal spores disseminated into the spinal fluid attacking the central nervous system. This resulted in hydrocephalus, trapped fluid in the brain. After ten years of marriage, we built a life we were proud of. Our children; Hillary, Zachary and Gregary were all younger than ten years old. We faced the greatest test of our lives. We wondered if our family and marital vows to love and honor in sickness and health could endure such a catastrophic experience. For nine years, each hour of each day we lived with a miracle. There wasn’t a medical explanation for Juan to be alive with as much damage that was in his brain. With a high risk for mortality, unknown medical outcomes, and the decline of my husband’s body, we put our faith to the test.

As I’ve written this memoir sequel, Enduring the End, my husband has since been put to rest, his body buried, but his spirit soaring. Basically, I’ve written this for my children to remember the legacy their father left behind. We lived to see many miracles transpire through the course of Juan’s illness. Our family lived by the admonition of Paul, we hope all things, we have endured many things, and we hope to endure all things. We continue with that same hope through our grief and loss as well. We believe in life after death and the hope to live an eternal life together as a family.

The positive outcome, I’m proud to say, is that we were happily married and kept the family unit together through a tremendous test. I don’t profess to have had the perfect marriage as there were years we fought over finances, discussed opposing views in raising children, and tried to be on the same page spiritually. I can proclaim how happy we were, especially in the end when we endured the trial. We stayed together in sickness and in health. The reward of staying together far outweighed the memory of how difficult it was. As a family we persevered and conquered from knowing the family is ordained of God. It is the plan for happiness. When father and mother fulfill their sacred responsibility to stay together and raise their children in a Christ-centered home, the Lord is bound to that covenant and consecrates the performance of that marriage and family.

Writing Enduring the End has been a difficult task as I write through the eyes of a widow. I lived it in first person, recorded it at the time in my journals, verbalized our life events to a variety of people, and published for others to read. Even though I’ve been open about my life, I believe it’s because my mind processes in third person as the storyteller. My children often say I speak as if I’m giving a religious fireside or inspirational seminar. Even then it’s still difficult to put into words my thoughts and feelings on how we survived the last few years of Juan’s life. At times, there are no answers to explain how it worked out, it just did. Other times, I share wisdom from my experiences.

There’s a quote in my office that reads, Tough times don’t last, tough people do. Many times I wonder when the tough times will end as I experience a different set of trials as a widow. I never thought of myself as tough either so I keep wondering if I’m tough enough to withstand any more tough times. I’m often on my knees several times a day. The Lord continues to refine me no matter what stage I’m in. As I’ve tried to follow the example of Christ for salvation, I also try to follow His counsel in overcoming fear in the world.

In this memoir, I share our journey through the medical, legal and religious aspects of life. Truth is often stranger than fiction. We really couldn’t imagine anything better than what we’ve lived. When I fully converted as a disciple of Christ I prayed to know and live all that this life has to offer. A light bulb clicked on in my head and I was confident to experience what life provided through pain, sorrow, joy and pleasure because I knew I could go through anything after learning about spiritual and physical death. I accepted that only in and through the atoning power of Christ I can go through anything. Learning all this, I then had to apply this to practice. To believe in God, I needed experiences to know He is real. I can honestly bear witness that God knows us individually. He knows our name, our strengths and our weaknesses. He loves us and watches us carefully as we progress. Just like a parent watches a child learn to walk, our Father in Heaven lets us fall and get back up again. He is our greatest supporter. I’ve learned to prayerfully ask God to direct me in the way I should go for peace and safety. I hope to believe that I’ve listened pretty well. I’m stubborn at times and want to go my own way, but through mercy I’m led back in the right direction. His grace makes up for my own will.

I want to thank the many friends who’ve supported me and my family with love, friendship and encouragement as we’ve traveled through life’s raging storms on numerous occasions. I appreciate the feedback many people have shared with me as they have helped me through the editing process of this labor of love.

As you read this end of life experience, I hope you can appreciate the legacy Juan left behind: an example of perseverance, fatherhood, selfless service, sacrifice, love, and honorably enduring the end. We hope all things, we have endured many things, and we hope to endure all things. May Juan’s legacy inspire you to continue to fight the battle, never give up, and enjoy the journey along the way. May God be with you until we meet again.

Dedicated to my three children Hillary, Zachary and Gregary.

Thank you for being my travel companions on this journey of life.

It is your strength and support that I continue to endure to the end.

Chapter 1

A Living Nightmare

Nightmares are often short-lived, preferably in dreams and then we wake up. Sadly, our nightmare occurred twenty-four/seven during nine long years. In the year 2000, we moved from our first tract home to a larger home east of the Phoenix area. We lived in east Mesa, Arizona near beautiful Saguaro cacti and rolling hills. Within the first year living in our new surroundings, my husband Juan contracted a variety of symptoms that left him with fevers, chills, and a significant weight loss. We were in and out of doctor’s offices for an entire year researching every specialty on the human body but no one was competent to give us a diagnosis.

It wasn’t until a year later, June of 2002 that our primary care physician ordered a spinal tap. The results were astonishing and required immediate hospitalization and treatment. Juan was diagnosed with cocci meningitis commonly known as valley fever/fungal meningitis. Unfortunately, his condition required aggressive treatment to his brain. His brain was completely scarred beyond repair. I still remember the conversation with Dr. Crowe, an infectious disease specialist, when I kept asking when my husband would recover.

Mrs. Zapata. You don’t understand. Your husband will never recover from this.

Of course I understood his words. I just needed to know what we were going to do about it. Juan received treatment for an incurable condition for over a year without prognosis.

Dr. Goodell, a neurologist, bathed Juan’s brain with interthecal injections of amphotericen assuring me, We’re doing everything we can folks. I’m giving Juan more medication than I’ve given anyone. We’ll do all we can to stop the valley fever cells from multiplying.

Eventually, Dr. Goodell fulfilled his promise and the valley fever cells became dormant within several years after diagnosis. Juan’s brain would never be the same, but we were grateful to have been given more time. Our children were four, six and ten when I brought their father home from the hospital at a meager ninety-five pounds. He needed our constant care. I always imagined he’d die at home, I just didn’t know when. I trusted that the Lord was aware and that all things happen in His wisdom and order. I was required to exercise faith even though day after day, year after year, holiday and season, I’d ask myself, Is this the year? Is this the last Christmas? Is this the last birthday? It could have made anyone crazy enough to run away, and the thought crossed my mind a time or two, but I loved my husband and our children. I had to constantly put aside my fears and focus on the family as a whole.

Juan endured several rough years of brain surgeries from a variety of Barrow Neurological surgeons at St. Joseph’s Hospital in Phoenix. He required just the right programmable shunt to siphon fluid from his brain and drain it internally into the abdomen area to control hydrocephalus. It wasn’t an exact science as Dr. Rekate, an accomplished neurosurgeon, had made minor adjustments to correct facial palsy, crossed vision and the effects of balance and vertigo. The eyes were Juan’s biggest battle. That’s unfair, Dr. Rekate said as he shook his head in disappointment. The shunts were working perfectly. MRI’s reported the hydrocephalus was under control. Another minor adjustment to move the spaghetti-sized shunt line off the optic nerve didn’t improve matters either.

Further attempts to troubleshoot distorted vision brought us to a pediatric eye surgeon who would cut the inner and outer eye muscles to align the eyes manually so Juan could see better. The only problem was that it was to be done in phases. After four years of hospitalizations, home health care and the emotional roller coaster in keeping Juan alive, our family was truly carried by God to endure many miracles.

After accepting our fate that Juan was to be treated but never cured, we rallied together and tried to make life as normal as possible for our young family. We didn’t want to live with a death sentence. So we lived each day as if it was the last but always had a brighter hope for the future. Our goal was to create as many family memories as possible because we never knew if a particular year was to be Juan’s last.

During the 2004-2005 school year, I went back to teaching as a long-term substitute teacher. I taught a 2nd grade classroom at the beginning of a school year and a 6th grade classroom in the second semester. These opportunities gave me confidence as a professional and I received much needed compliments from the staff, students and parents.

Juan continued to survive at home, staying in touch with the window covering industry and keeping up with the household chores. Dizziness, poor vision and extreme pain were obstacles, but Juan never stopped scheduling appointments with doctors to find a better quality of life. He still couldn’t drive so I would accompany him to his appointments and if I was working, his sister Diana would take him. I was proud of Juan to never sit around and feel sorry for him self. He did laundry, cooked dinner and interacted with the kids more than I’d ever see him do and an appreciation for one another grew as we had exchanged roles. We adapted to our specific circumstances.

I don’t know how women do it. How do they stay home all day and do nothing but cook and clean and take care of the house? I’m going crazy. Juan had complained after a day he was home alone.

Welcome to my world. You don’t even have diapers to change or crying babies either. I explained to Juan why I had to be involved in play groups and Mom’s clubs while the kids were younger. He’d accuse me of being busy doing nothing, but he now understood that even though I took pride in our home and family, I needed to have an outlet to exercise my mind and body.

Now that things were stable with Juan, I decided to go back to school for my master’s degree. I took evening courses through NAU’s distance learning in Educational Leadership and graduated in December of 2005.

One evening, our professor polled the students, How many of you are here to further your career? How many of you are here to climb the salary ladder? How many of you are here for another reason?

At 35 years old, I learned not to care what others thought about my answer. I was the only student who gave another reason. I wasn’t teaching full-time. I wasn’t putting educational theories to practice. I was working on my mind, doing something selfish and independent for me. I needed to work on my mental health after living through the past few years of a catastrophic experience with the knowledge that Juan would eventually die from his illness. Perhaps I was getting more education to fall back on the career to teach when the nightmare of Juan’s fate would become reality.

I truly loved my educational courses and admired my professors and colleagues. I shared my family circumstances with many of my colleagues and it seemed to change their perspective on life. I began to realize that our story could make a significant impact as tears would come to the eyes of strangers. I was bewildered by the emotion people displayed as I gave an inspirational seminar. I received far more than a master’s degree; I received therapy for me to inspire other people and the knowledge that my life experiences weren’t lived in vain.

Juan often wrote me little notes, typed or hand written. He knew I loved the combination of words so I found great comfort and meaning in his voice on paper. God knew I needed to communicate with him. It’s what kept us close through this trial.

On August 14, 2005

My Dear Afton, You truly are the apple of my eye. You have been everything a man could want in his wife. I hope that I have done equal. The joy you have brought to me is immeasurable! You have been through hell and back dealing with this sickness. I’m sorry you have had to deal with it. I wish you didn’t have to even deal with any pain. It crushes my heart to see you like this. I love you and the kids. Help me to keep fighting. Love, Juan

For Thanksgiving, we flew to Calgary, Canada to visit Juan’s sister Karina and her family. It was a nice reunion for Juan’s family to come together. Juan’s sister Nancy and her husband Frankie along with their kids flew from Las Vegas. Juan’s other sister Catalina, her husband Chuck and family flew from Albuquerque. Juan’s dad Javier, and step-mom Bonnie, were also with us. After renting a few vehicles at the airport, we caravanned behind Karina and her husband Greg. Juan’s sister Diana and his mom Romelia were the only ones unable to take the trip. Karina lived in Lethbridge and we took a few days to travel to Banff and back to Calgary. We also visited the Cardston, Canada Latter-Day Saint temple. We covered a lot of ground in just six days. Our plans each year after Juan’s brush with death was to spend every Thanksgiving with the Zapata side of the family.

In addition, we took every opportunity during Memorial Day and Labor day weekends to get together. We went