My Life with Chronic Illness and God’s Grace

By Julia McClanahan and Steven McClanahan

At the age of seven years old, Julia was diagnosed with juvenile rheumatoid arthritis. This was during a time when there was little awareness that children do contract this disease. This is her journey from being wheelchair bound to graduating from Vanderbilt University with a double major. The journey she traveled was filled with obstacles and opportunties. The obstacles included eight joint replacement surgeries (the first at age 15), a major cervical fusion surgery, and numerous other surgical procedures. The opportunities she had included marriage, being a mother, serving as an advocate for others with disabilities through volunteer activities with the Athritis Foundation at the local, state, and national levels. She also had opportunity to share her faith in Jesus Christ as she walked the road set before her.

Julia believed in the “teamwork” concept of dealing with her disease. Her team was led by Jesus, with her family, friends, and medical staff rounding out her team. It was Julia’s desire that through her journey others would see the strength and hope she experienced. Most importantly she shares that the Lord gives victory amid adversity. She knew this to be true because she has traveled this road.

• Language: English
• Publisher: WestBow Press
• Release date: Jun 21, 2021
• ISBN: 9781664230958

Julia McClanahan

Julia and Steven McClanahan are graduates of Vanderbilt University, BS molecular biology and sociology and University of Tennessee, BS Mechanical Engineering, respectively. They were married for thirty-six years and are the parents of two boys and grandparents to three grandchildren. They had been active in the churches they attended until Julia’s health worsened. They served as Bible study leaders at different levels, e.g. elementary, high school, college, and adult. They also held many positions of leadership in their church. Julia was an active advocate for those with disabilities and volunteered at the local, state, and national levels.

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Copyright © 2021 Julia and Steven McClanahan.

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and in some cases, names of people and places have been altered to protect their privacy.

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Cover Art: Beach Wall, From Original oil painting by Peggy

Ellis. Copyright ©2011 Peggy Ellis. Used by Permission.

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Scripture quotations are from the ESV® Bible (The Holy Bible, English

Standard Version®), copyright © 2001 by Crossway, a publishing ministry

of Good News Publishers. Used by permission. All rights reserved.

ISBN: 978-1-6642-3096-5 (sc)

ISBN: 978-1-6642-3097-2 (hc)

ISBN: 978-1-6642-3095-8 (e)

Library of Congress Control Number: 2021907504

WestBow Press rev. date:  06/16/2021

CONTENTS

Preface

Acknowledgments

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Epilogue

Acknowledgments of the Achievements of Julia Elizabeth Watson McClanahan

Endnotes

This book is dedicated to Julia Elizabeth Watson McClanahan

(July 2, 1961–November 9, 2019) as well as to our sons, Justin

David and Eric Thomas, their wives (Kara and Abby), and to

our grandchildren, Odin, Solan, Luna, and those yet to come.

PREFACE

After Julia passed away, I was going through her papers and came across a manuscript that she had started several years ago. The manuscript was the story of her life and how she dealt with arthritis and all that came with it. It was a little later that I decided to finish what she had started. The majority of what follows is in her words from her manuscript, journal entries, talks as an advocate for those with chronic illnesses, and quotes from magazine and newspaper articles about Julia. I have filled in some details to help with the narrative based upon my memory and the memories of many people who knew her along the way. Where she had stopped writing around 2010, I picked up her story.

When I shared with Julia’s cousin Randy about finishing the book, he asked what my purpose was in doing it. I had not given it any serious thought up to that point. I just wanted to finish something she had started. But as I considered his question, I realized the answer was essential to my effort. I had to search my motives for completing what Julia had started. It quickly became apparent that a better question was Why was Julia writing her story? As I pondered that in my mind, I concluded that there were three reasons to finish it.

First, I wanted our children to know her story from beginning to end. And to provide our boys, Justin and Eric, with an understanding of the struggle Julia faced for fifty-one years. Obviously, they knew that their mother had rheumatoid arthritis. But they were unaware of what her life was like growing up with arthritis. I hoped it would help them understand who she was. She never allowed them to know exactly how much pain she was dealing with each day. She did not want her disease and limitations to affect them, although some did regardless of her best efforts. For instance, when the boys were small, she could not get on the floor and play with them. Once she was down, she was unable to get up without an adult assisting her. They saw Julia push to do the things she wanted to accomplish. They observed, probably without realizing it, the sacrifice she made daily to be a good mother to them.

In addition, this is for our grandchildren, Odin, Solan, Luna, and others yet unborn. They will not know or remember Nana. Hopefully, this book will reveal Julia to them. They will learn of her love of God, friends, and family and especially her love for her grandchildren.

Julia desired to share with others who deal with chronic illness or disability how she dealt with her struggle in hopes it would encourage them. Julia was always ready to share with others who deal with chronic illness, whether it was arthritis or any other type of chronic disease or disability. She was a major advocate for those with disabilities. Hopefully, reading her story will encourage those who deal with similar issues.

Over time, Julia came to realize that, for her, the best method was to develop a strong team. Her team consisted of three groups. Every team must have a team leader. This is the most important member of any team. Julia’s leader was Jesus Christ. Julia surrendered control of her life and disease to Jesus Christ at an early age. Julia realized that this disease had no cure so she would struggle with it all her life. She acknowledged that God was in control and would always be there for her. After this, God provided other team members consisting of family, friends, and health care providers. Family and friends were essential for encouragement and socialization as well as willing ears to listen to her frustrations. Julia never allowed herself to have many pity parties as she called them, and it was friends and family who helped her out of those times.

Certainly not the least important members of the team are the health care providers consisting of internists, rheumatologists, gastrologists, surgeons, nurses, and physical therapists who were essential members. The two doctors who had the greatest impact on Julia were Dr. James Turner and Dr. Joseph DeFiore. You will meet these doctors in her story, along with many others. They taught her to be informed about her disease and know her treatment options and encouraged her to ask questions and challenge health care providers, if she thought they were not being aggressive enough in her treatment.

Last, but certainly not least, she desired to share with others that Jesus Christ was the source of her strength and the only way she was able to get through each day. She desired to tell everyone that Jesus is the Way, the Truth, and the Life. He is not an alternate way, preferred way, or best way but the only Way to the Father. For Julia, her truth came from Jesus Christ through the Word of God. Just one of her favorite scripture verses reads, Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen.¹

Julia would want to share her absolute faith in Jesus Christ. She would be the first to say that being a disciple/follower of Jesus Christ did not guarantee an easy life. However, she believed that the Lord had a purpose for her struggle. A purpose she may or may not have seen or understood but a purpose that would bring praise and honor to her Lord. She could often sense the presence of the Lord in her life and the realization that His grace was always sufficient. No doubt there were times in her journey when she could not say that, but that is when faith begins.

Steven McClanahan

ACKNOWLEDGMENTS

I wish to thank Julia’s friends and family who helped to recall memories of her. There were many who sent me information, spoke to me on the phone, and met with me personally to share memories. There were too many to name here, but each is remembered.

A special thank-you to Lynn Weisgerber Rose for recalling many of the exciting and special days of high school and church activities. Lynn was a tremendous help in proofreading, editorial advice, suggestions for improvement, prayer partnering, and keeping me on task. But most of all for being a real friend who took the time to help because she loved Julia and believed that the name of Jesus would be uplifted by this project.

I would like to express my gratitude and appreciation to the staff of WestBow Press for their guidance, patience, and kindness as they assisted this first time author in publishing this book.

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Chapter 1

And we know that for those who love God all things work together for good, for those who are called according to his purpose.

—Romans 8:28 (ESV)

W hat a special day! It was a clear, sunny, and hot afternoon in June 1983. My mind was full of many thoughts about the past, present, and future. I was filled to the brim with feelings of love, joy, peace, and anticipation. This special day in June was my wedding day!

As I stood at the altar of our church with my father and husband-to-be, I heard the pastor’s special words. Any of us who have known Julia in the past years know what a day of victory this really is, for you have seen the things which she has had to overcome in her life. As I stood there with tears in my eyes, I realized I was surrounded with such love. The church was filled with family and friends who had loved me through so many rough times, and now I was about to become the wife of a wonderful man who loved me enough to vow to be with me always! There was also an even greater love present that day, and that was the love of Jesus Christ, for He is love and He made that special day possible. The words of our pastor were so special and meaningful, and they made me think back to the past and the road I had traveled to reach this day.

My life was much like most in the early 1960s: learning to ride a bike, climbing in the tree house that my daddy had built, and playing with friends. I started kindergarten like everyone else at age five. I enjoyed school and spending time with my friends.

It was in the first grade that I began to have pains in my knees. The pain would come and go, but each time it would be worse than it was before. I recall on one occasion I was shopping with my mother and grandmother when the pain started in my knee. I begged my grandmother to get Mother to take me home. Things went on like this for several months.

My parents thought it was the typical growing pains children experience. However, over the months, the pain continued to get worse, and I began to run a low-grade fever. The pediatrician believed I had caught some sort of viral infection and would be fine in a few days. After a week, I was only getting worse, so my parents took me back to the doctor. He wanted to give it more time, but my mother insisted he send me to the hospital. She knew her child, and something was wrong! He finally relented and said, You know your child better than I do. If you think she needs to go to the hospital, that is what we will do. My parents took me to the East Tennessee Children’s Hospital in Knoxville, Tennessee, just twenty miles away.

We arrived, and I was admitted with orders for bed rest and tests to determine what was going on in my small body. These were terrible times. The pain was so bad I could not even stand the weight of sheets on my body. If someone leaned on my hospital bed, it felt like I was being stabbed.

This was the worst of times for my parents. Their baby girl was in horrible agony, and they had no understanding of why. It was at this time that the team that God had foreseen began to take shape. Days after I was admitted to the hospital, the pastor of our church, Reverend Richard Smith, came by to visit. My parents explained what little they knew. They could not understand why I had to suffer like this. No one knew what was making me sick. The pastor had no answers for them. He did say that when we are in a situation that we do not understand or cannot make sense of, we must give the situation totally to the Lord. He suggested that perhaps they should give me totally and completely to the Lord. If the Lord’s plan was not to heal me but to bring me to Him, then that was okay. If the Lord left me there, then they must ask Him to guide them about how to care for me and to provide doctors who would know how to help me. My mother’s immediate response was No! How could she tell God it was okay if He took her baby away from her? No, that was too much to ask! She could not, would not, do that!

This moment was followed by much mourning, soul-searching, and tears. Finally, the three of them knelt on the floor beside my bed in that hospital room and pleaded with God to heal me and take away the pain if it was His will and purpose. If my healing was not His plan for me, then they surrendered me and my life to Him, no matter how long or how short. If He chose to bring me home to heaven, then they would give Him praise for His mercy and thanksgiving for the time they had with me. If He chose to leave me for a time, then they asked that He guide them to the right doctors to take care of me. This was the hardest prayer they had ever offered up. It was also their greatest act of faith and worship.

My parents’ prayer asking for healing for my body was just the first of hundreds of prayers that have been offered up in my lifetime. Many have asked, pleaded, and begged God to heal me from this terrible disease. People have asked me if I get depressed with the thought that God never answered those prayers. Over the years, I have come to realize and to accept that God did answer those prayers. His answer was no. Do I get depressed because that was His answer? To be completely honest, yes. I wanted to be healed. I would have willingly accepted the damage already done to my body if God would just take the disease away to prevent more damage and alleviate the side effects of the medication I have taken over the years. But I am in good company with the no answer. The apostle Paul pleaded with God on three occasions to remove what Paul described as a thorn in the flesh from his body (2 Corinthians 12:7). God’s response was no. Even God’s own son, Jesus, pleaded three times not to go through the trial of the next twelve to fifteen hours (Matthew 26:36-44). God’s response was no. Healing would have helped me, but it would not bring glory to God’s name. It would not have fulfilled His plan for me and the plans of those around me.²

Over several days, doctor after doctor came in to examine me as my pain increased and I continued to spike a 103-degree fever. They took throat cultures, blood cultures, urine cultures, skin tests, EKG, x-rays, mono tests, and dozens of other tests. They were not able to make a concise diagnosis. By this time, I had developed a painful rash on my stomach. They did all that they could to try to control the pain, with three hundred milligrams of aspirin every four hours, but with minimal success.

They eventually asked Dr. James Turner to consult on my case. Dr. Turner was an internist who specialized in patients with arthritis. There were no rheumatologists in Knoxville at that time. He came to my room, examined me briefly, and ordered additional blood work. He also drew ten cubic centimeters of a greenish fluid from my knee. Based on his examination and test results, Dr. Turner was convinced that I had rheumatoid arthritis or, more appropriately, juvenile rheumatoid arthritis (JRA). As a seven-year-old, I had no idea what that meant. My parents were stunned. Arthritis was a disease for old people! How could their baby have arthritis? How could this happen?

This was when Dr. Turner became my hero. He did not turn his back to me and talk to my parents. He sat down next to my bed and talked to a seven-year-old little girl about her disease as my parents listened. He explained that juvenile rheumatoid arthritis is not common, but it does occur more often than people realize. He explained that the painful rash was caused by inflammation of the arteries known as rheumatoid vasculitis. He explained that arthritis is an autoimmune disease where the immune system mistakes the body’s own cells for foreign invaders. In my case, my body was attacking the synovium around my joints, causing them to be inflamed, painful, and tender. The synovium is the lining around your joints that helps keep them lubricated so they can move smoothly.

After he explained all of this, he concluded by saying my case was the worst he had ever seen.

Did I understand any