The Gift of Pain - Chapter 1
We cannot escape pain. It is a fact of life as certain as death and taxes. We may avoid it for a while. We may deny it for a period. But we cannot escape it forever.My first experiences with pain were mild. I stubbed my toes, scraped my knees and fell off my bike, like every other child, my own included. But usually, a soothing word, a caress and a band-aid and the injury was quickly forgotten. Okay, I just lied there. The truth is, I would scream bloody murder for an hour and a half and then I would get over it! (So that's where my kids get it from.)
I had occasional trips to the emergency room for stitches and the typical growing pains of youth. As an adult, I seemed to gain more grace but, on occasion, would twist an ankle or bruise a shin. I gave birth to three beautiful children and experienced all the sickness, pain and utter joy associated with childbirth.
All of these experiences with pain were eclipsed, however, in the past several years, as I discovered the unrelenting cruelty of sickness and suffering.
For some time now, I have been compelled to tell my story. The facts are often ugly and grim. I questioned whether or not mine was a story that people would desire to read and if it was self-indulgent.
Recently, I had two specific incidents that prompted me to take the leap and bare a bit of my soul. Two different friends, on separate occasions, said, “You need to share what you have been through." One friend knows a fair bit of my story, the other, very little. Their words have stuck in my mind like gum on the bottom of my shoe, and I can’t get them off. So, I have decided to take a risk and let you into my private world of chronic pain, shattered dreams, renewed hope and joy. This story will take a while. It is still often hard to relive. There are tears in my eyes as I write this. But, as the Swedish Proverb says, “Shared joy is a double joy; shared sorrow is half a sorrow”.
This journey began approximately ten years ago. At that time, I was working full-time as the secretary of the Christian school where my two youngest children attended. Our oldest daughter was at the end of her high school years, looking ahead to college.
Jon and I had worked in the same office a few years previous to this time and he commented to Steve, “Remember how sharp Karen used to be. She was type A and could multi-task better than anyone I knew." Turning to me he said, “You’re just not the same anymore."
Now, I know that this sounds like an unusual thing for somebody to say and it really annoyed my husband. He felt that it was unkind and told Jon in no uncertain terms. I, on the other hand, felt like there was finally somebody who acknowledged how I had been feeling for some time – dull, slow and just generally out of whack.
For months I had questioned Steve, my mom, my sister and friends, “Do you notice how different I am? I’m just not the same. Something is wrong. Do you see it?” One by one they had reassured me that I seemed normal and that I was probably just tired - not to worry.
I told the doctor how I was feeling and they ran some blood work and ordered an EKG, but everything appeared fine - "probably just hormones" (a doctor's favorite go-to line).
All that changed on Thanksgiving Day, 2001. We had a great time at Grandma and Poppa’s house, ate too much turkey and were driving home, just over a mile away. Steve had gone ahead with our oldest in one car and I was a few minutes behind with the youngest two in their car seats. As I was driving down the hill from my parent’s house I had this strange feeling come over me. I wasn’t sure what to do with the car. It took me a few seconds to orient myself to where I was and it scared me.
I pulled over to the side of the road, my mind in an uproar. “Mom, what are you doing? Why did we stop?” the kids questioned. At first I couldn’t speak, but eventually told them that I wasn’t feeling well and needed to rest before we could go on. In my mind I was thinking, “What is wrong with me? I can’t drive any further. Maybe my sister will come along soon and see me here.”
Several more minutes passed and nobody drove by. I got my bearings and continued on home. When I walked in the door, Steve could tell something had happened. I looked at him and said, “I am not getting back in that car again until somebody tells me what is wrong. I’m going to the doctor tomorrow and I am staying there until I get some answers!” I was truly terrified.
This was the beginning of my journey through sickness, pain and strengthened faith. It is a journey that I am still traveling. I don't know how to share it briefly, so I will continue to share my story over the next several weeks. I earnestly pray that somehow, when you read it, you will be encouraged to persevere through your own journey, however painful that may be. My purpose in this is not to glorify myself or garner your pity, but to bring glory to the One who was, “despised and rejected by men, a man of sorrows, and familiar with suffering.” Isaiah 53:3 NIV
You will discover how I can truly say, I thank God for the "gift of pain".
The Gift of Pain - Chapter 2
It is amazing to me that, as soon as I decide to share my story and the lessons I have learned, I find myself again battling pain. The past three days have been low. I have even debated whether or not I should continue telling my story. There isn't a neat and tidy bow to tie at the end. After a few days of soul-searching I have decided to continue - so, here it is. I am a work in progress.Years of uncertainty about my health led to a crisis and made me determined to get to the bottom of my health issues. After a terrifying incident behind the wheel of our car, I vowed to find the answers I needed. I told Steve that I would not drive again, until a doctor could tell me what was wrong. Little did I know, when I uttered those words, that it would be over four years before I would get back behind the wheel of a car.
The day after the frightening episode in the car, I showed up at the doctor’s office without an appointment, and insisted that I needed to see someone immediately. After some time I finally got in to see the doctor. I related to him how I was feeling and the specifics of my incident the day before. He asked me, “Do you ever space out and lose track of time?” “No!” I said, annoyed at him for asking me. “Yes, she does” Steve responded. I looked at him in disbelief. “I do not!”
Steve insisted that I did. I looked at the doctor, then back at Steve, hurt by what he was saying. “Why did you never mention this before?” “I didn’t want to make you feel bad” was his response. I sat there, dumbfounded, as the doctor questioned Steve further. He asked him what my behavior was like when these incidents occurred, how often it happened and for how long. After speaking for a few more minutes, the doctor turned and looked at me. “Karen, I believe you are having seizures. You cannot drive anymore until you see a neurologist. I will make a referral right away.”
The impact of his words hit me like a punch to the face. I looked out the window and, watching the cars drive by, thought, “This can’t be happening to me. What is going on? What does this mean? How will I survive without driving?” The rest of his words were a blur. We walked out of his office and I wept the whole way home.
For the next several months, my life was an unending series of tests and doctor’s visits – EKGs, EEGs, CAT scans, SPECT scans and more. I was diagnosed with epilepsy and my license was suspended. They said I was experiencing partial complex seizures. The neurons in my brain were misfiring.
The seizures increased in frequency and intensity. My health deteriorated rapidly and before long, I could no longer hold down a job, drive a car or care properly for my family. I was afraid to leave the house, for fear of having a seizure in public.
To the untrained eye, my seizures were not obvious. I could sense when they were coming as the left side of my face and body would grow numb and tingle. If I immediately lay down, the seizures were short and less intense, but the more stressed, hungry or tired I was, the more intense my seizures would become. I would lay my head down, or lean back in my chair and feel this sensation come over me. I could barely move, couldn’t speak and would wait for it to pass.
Shortly after my seizures began, I had another health scare.
One day, while visiting my sister, I was gripped so strongly with pain that I couldn’t stand and could hardly speak. I had suffered with this pain before but not with this intensity. My sister raced me to the emergency room. The ob/gyn doctor on call that day was one of the top doctors in his field. After examining me, he informed me that I needed a hysterectomy and I had to have it as soon as possible.
Because of my symptoms and the length of time I had them, he was concerned that the large tumor within me might be advanced ovarian cancer. Within 24 hours they had me scheduled for surgery. I lay there, prepped for surgery. A doctor I had never met before walked into the room and introduced himself to Steve and me. He smiled and said he was the oncologist and was on hand “just in case”. Worst-case scenarios reeled through my mind.
My God, my God, why have you forsaken me?
Why are you so far from saving me,
so far from the words of my groaning?
O my God, I cry out by day, but you do not answer,
by night, and am not silent.
Yet you are enthroned as the Holy One;
you are the praise of Israel.
Psalm 22:12 (MSG)
What a flood of relief, when I woke up in the recovery room and saw a huge smile on Steve’s face. “You’re fine. The tumor was benign,” he said. They had also performed an appendectomy as my appendix appeared as though it was about to rupture.
I wept with relief.
In the meantime, my seizures continued. They didn’t last long, but the impact was incredible. Following a seizure I would feel exhausted, like I had run a marathon, and often felt very emotional. Because I was unable to drive, I had to ask for rides to the doctors or the store. Family and friends became my taxi service. The helplessness of my situation overwhelmed me. Looking back on it now, I realize how selflessly these loved ones cared for me – driving me, helping with the kids, cooking meals, praying and just being there. I am humbled when I think of their generosity and love.
There is one particular incident that sent me plummeting into despair. I was lying on the sofa when I felt a seizure coming on. My son (only four years old at the time) came in the room as I lay there. He called my name repeatedly and tugged at me to respond. I could hear him, but could not speak. My six-year-old daughter came behind him.
“Mommy’s not answering me", Sam told her. A few seconds passed. Rachel called my name. When I didn’t respond, I heard her turn to her brother and say, “I think she’s dead”. They both climbed on top of me and sat silently. Slowly, I recovered and reached up, pulling them close to me. I lay there and wept - utterly helpless to comfort them. I couldn’t bear to see the fear in my children’s eyes and wondered if God had abandoned me in my despair.
It would take some time for me to discover the truth. God was holding my hand through this journey, but the journey wasn’t over yet. I would need to grip his hand firmly.
In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
Psalm 18:6
The Gift of Pain - Chapter 3
Months turned into years, as my neurologist worked diligently to pinpoint the source of my seizures and find a medication that would halt them. I was blessed to have an incredible neurologist. I know it was God’s provision for me at a time when I felt little hope. Not only was he a top neurologist, he was an epileptologist. Dr. Sirichai Chayasirisobhon, known as Dr. Chaya, is an incredible man, a devoted Christian from Thailand and tops in the field of epilepsy research and treatment.We discovered that Dr. Chaya had come to faith in Christ at a church in Thailand that was planted by the Stone Church in Toronto, while my dad pastored there over twenty years previous to this time. What an incredible 'God connection', for my heavenly Father to be preparing this man, while I was just a child, to minister to me all these years later.
The first few times I visited Dr. Chaya, I struggled to understand his heavily accented English but from the very beginning it was clear that he was on my side and would not rest until I was well. He never said, “We may not find a solution” only “it may take time”.
We still laugh about the time I asked Dr Chaya if there were any dietary restrictions that I needed to be aware of and specifically, if I should give up drinking coffee.
While Dr Chaya and his staff encouraged me, I encountered other doctors who were less than stellar. One particular doctor spoke words that crushed my spirit.
I went to the Kaiser Los Angeles facility for a full day of neuro-psychological testing. On the way there I had a seizure and was dreading a day of endless questioning. For over six hours I underwent a battery of tests and evaluations. Several of these tests were to measure IQ. As I took the tests, some of the clinicians told me that I was doing exceptionally well. I thought nothing of it and went home exhausted.
A week later Steve and I went back to LA to discuss the results of the tests with a doctor I had never seen before. He was an esteemed neurologist and from the beginning of our session was arrogant and condescending. Anybody who has suffered from a long-term illness knows how vulnerable you become to words that are spoken while you are in such a fragile state.
We went through the test results and he informed me that one of the things they had discovered was that I had an exceptionally high IQ. The doctor then proceeded to ask me a series of bizarre questions.
“Were you the victim of sexual abuse as a child?”
“Have you ever been a victim of violence?”
I replied, “No” to all his questions, but he wasn’t satisfied. He persisted, asking the questions again, rephrasing them and repeating them. I assured him that I had never been the victim of any violent act, wondering what on earth he was getting at. Steve sat beside me, puzzled by his questions.
After half an hour or more, the doctor stated with conviction, that I was the victim of some violent or traumatic act. In his (not so humble) opinion, I was repressing this memory. I stared at him in disbelief as he continued on, insisting that this was the cause of my seizures and I must dig deep into my psyche to uncover the root. At the core of his insistence was my high IQ, a sure indicator, he said, of someone with repressed memories (not true, I later discovered).
I left his office dazed and confused. For the few weeks my mind was in an uproar. These were some of the convoluted thoughts that raced through my head, day in and day out.
“I know I’m not the victim of abuse. I’ve never been abused in my life.”
“But…if I was abused and had repressed it, how would I know.”
“Maybe I am a victim and I just don’t know.”
“If I am a victim, who abused me?”
I repeated these questions, and others, over and over in my head. I lay there, picturing in my mind every loved one and acquaintance from my childhood, imagining them as perpetrators of some horrible crime against me. It was driving me mad.
The other aspect of the doctor’s report that I found troublesome was the issue of my IQ. My mind was so muddled from endless seizures that I found it difficult to read or focus on anything.
“What a waste of a brain!” I despaired. “What have I ever done with my life?” “I wish he had never told me.”
I plummeted deep into depression, certain that I was abused, useless and possibly crazy.
Finally, one day, Steve had enough. After listening to me rail on with my confused questioning, he looked me in the eye and said, “Karen, who is the author of fear?”
“I know, but…” I started to argue.
“Who is the author of confusion?” he asked again.
“The enemy – Satan” I hesitantly replied.
“Who is the author of peace and a sound mind?”
“God, my heavenly Father”, I meekly replied.
“This doctor has spoken confusion and fear into your mind, without offering you hope. You need to let it go, focus on God and accept his healing for you.” Steve continued reassuring me and read to me Scriptures of hope and healing.
2 Timothy 1:7
At my monthly appointment with Dr. Chaya, I related to him, in a panic, what the other doctor had said. With love, Dr. Chaya responded that he did not feel like I exhibited any of the symptoms of someone associated with repressed memories – self-destructive behavior and sexual promiscuity. He also stated that there was a great deal of controversy on this subject overall. He reassured me that we would find a cure for my seizures and to trust God to help in the meantime.
Slowly, I began to let it go, stop the questioning and believe for my healing. There were days that I could believe, but many days of deep, dark despair. I kept very few records of those years but recently found a journal with a few entries that summed up my feelings.
“This morning when I went forward for prayer I just felt like it’s a waste of time. I don’t believe I’m going to be healed and I don’t hold out much hope with the doctors either. I just see an endless horizon of seizures and sickness – living half a life as half of a person. My short-term memory and my ability to concentrate are decreasing. Some days I can barely remember or process anything…I feel so out of control. Everything is spinning away and I can’t stop it.”
On September 11, 2003, I started taking Topomax, the seventh different seizure medication I was prescribed. That was the beginning of my slow road to recovery. It was a fairly new medication at that time, but trials had shown it to be successful in halting seizures with few side effects. Other medications had caused heart palpitations, sleeplessness, depression and a myriad of other unwanted symptoms.
Days passed without a seizure, then weeks and before long I had been seizure-free for months. I held my breath and continued to pray that this would be the remedy I had been praying for.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11 (NIV)
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