I have been in the process of writing my memoirs for years now. It's a story I feel that needs to be told, even if only for myself. Living with a chronic neurological illness has altered the course of my life. I do not grieve for what I can never have; however, my health has forced me to live with more forethought. The lessons that I have learned that have made coping a much more successful adventure. While some would say that my life is far from adventurous as there are many things I will never experience; but I would beg to differ for I have traveled to the depths of my soul and that is a timeless journey that multitudes will never take for fear of seeing the truth. This is the story of my journey. This is what living with chronic illness looks like. This is my life.
Diagnosis
Driving the black Corvette gave me a sense of power. The car responded eagerly as my high heeled sandal pushed the gas pedal closer to the floor. My attention had been stolen by the pleasant summer weather and the pleasure of driving such an amazing piece of machinery. I had no idea that my entire world was about to be turned on end as I maneuvered the car quickly over the bridge toward the medical center. Mid-afternoon traffic was light and I was enjoying the act of driving such a fine piece of machinery. My mind pleasantly soared over hills and around corners with the car and it felt as if we were starring in a television commercial rather than getting to my appointment. My thoughts were consumed by the experience of driving and I was not remotely thinking about the purpose of my visit. I had no suspicions that anything was amiss as I pulled into the parking lot of my doctor’s office. My appointment had been booked to discuss the findings of my recent MRI. My doctor had assured me that she was confident it would come back without any remarkable findings.
I was lost in my thoughts of driving through Italian countryside when the nurse called my name. Obediently, I rose and walked toward the nurse while trying to refocus myself on the purpose of my visit. As I followed her into my doctor’s office, my heeled sandals clicked rhythmically on the floor. I noticed how my slinky red dress swayed with my hips as I approached the examination room where I would receive the life altering news. There was nothing in my previous thirty-six years that could prepare me for the news I was about to receive. Since my doctor had been so certain that my MRI would be normal, I had come alone. I had no reason to suspect I would need or want support. I was young, healthy and this test would reassure me of just that despite my lifelong battle with chronic migraines. After I was seated on the paper covered table, the nurse unfurled the noisy velcro of the wide strap and placed the blood pressure cuff around my arm. She stuck the thermometer under my tongue and commented on how nice my red dress looked. With the thermometer stuck tightly under my tongue I could merely nod in response to the nurse’s compliment. So I found myself thinking about my red dress as the nurse noted the numbers of my vital signs down on my chart. She indicated that the doctor would be right in and quietly slipped out of my room.
After several minutes of studying the walls in the room, there was a soft knock on the door. Dr. W stepped into my room and offered me her hand. My doctor was a petite, perky, blonde; one would expect to see in a sorority house rather than a clinic practicing medicine. She was soft spoken, diminutive and had a Barbie like quality about her. Dr. W was always impeccably dressed, well coifed, perfectly made up and always wore high heeled shoes. She had a bright smile that could warm your heart even if she was delivering devastating news. After shaking my hand, the doctor immediately mentioned that she liked the high heeled sandals I had worn that day. I thanked Dr. W for the compliment and we exchanged pleasantries about our mutual affection for shoes. I was thankful that I had never seen her wear the more practical, comfortable shoes worn by most doctors and nurses. After all, I appreciated her sense of style over comfort.
“So, you are here to review the results of your MRI,” the doctor said as she flipped through my chart. A worried look started growing over her face as she scanned the pages. My pulse quickened just a bit. “It seems that they have not placed your results in your file yet; but I’m sure it was received. Let me go check the computer and find the results.” I breathed a sigh of relief as Dr. W excused herself to go determine the whereabouts of the missing results. I reassured myself during her absence, the MRI had just been a formality. This was just a routine MRI, she didn’t expect to find anything unusual and I shouldn’t either. This is just a snapshot of my brain to get the ‘all clear’ before sorting through the myriad of medications that will help lessen my migraines. After a few moments she returns with results in hand. As she looked over the report she read aloud, “Thirty-six year old female, MRI of the brain. Ah, here it is. Findings: Arnold Chiari Malformation, type 1.” I must have looked very perplexed and I felt the color drain from my face. Dr. W asked me if I was alright. “I don’t know. What does that mean? What is it?” Dr. W admitted that she was not familiar with this particular condition. So she excused herself again to seek clarity on the MRI results.
In her absence, I wondered what this diagnosis could mean for me. Was this the cause of my lifelong battle with migraine headaches? What are the treatment options available? What kind of disease is this? Thoughts were flying through my head like an Oklahoma tornado. Was this serious? Is this life threatening? Is it hereditary? Does my son, Brendon, have this? What will happen to me? Luckily, the doctor returned with information in hand and stopped the flurry of activity in my head. The doctor read directly from a medical sheet printed from the internet. “Arnold Chiari (KEE-ar-ee) malformation is a rare malformation of the brain that is sometimes, but not always, apparent at birth. It is not considered hereditary. It is characterized by abnormalities in the area where the brain and spinal cord meet that cause part of the cerebellum to protrude through the bottom of the skull into the spinal canal. The portion of the cerebellum that protrudes into the spinal canal can become elongated and is called the ‘cerebellar tonsils’ because it resembles the tonsils.” Dr. W then explained that the next step would be referral to a neurosurgery to determine if I was a good candidate for surgery. Arnold Chiari Malformation is not curable, one merely hoped to alleviate the symptoms with neurosurgery. My head was full of thoughts and questions; yet I couldn’t manage to put them together in an organized fashion in order to give voice to them. I was stunned by this recent revelation which had turned today from a pleasant day to take a drive to a day of confusion and bewilderment. I agreed to schedule an appointment with the neurosurgeon as quickly as they could get me in. They would be able to provide me with more detailed information regarding this particular condition. Dr. W handed me the printout and the number to the neurosurgeon; then asked that I schedule a follow up with her in two months.
As I walked out of the doctor’s office I was no longer thinking about my red dress that swayed with every step I took or the delightful piece of machinery waiting for me in the parking lot. I stopped at the desk to make my follow up appointment and received my free parking token. I thanked the clerk and tried to smile. I stepped off down the hall and merely tried to process the information that had just been given to me by the doctor. Yet I couldn’t process it because there were so many questions that would have to be answered by a neurosurgeon. I hit me like a ton of bricks, my doctor had just looked up the definition of this thing, this malformation, on the internet! My doctor wasn’t even familiar with what I had. I was completely baffled by all this as I walked down the hall toward the front door. This didn’t bode well for me. I tried to hope that the neurosurgeon had more information about this than my doctor did. Surely, they would be more prepared to handle my condition than she had been. They trained for these kind of conditions. They see these things all the time. Then I recalled that Dr. W had indicated that this was considered a rare condition. My faith was quickly waning that even a neurosurgeon would be able to answer my questions.
I squinted as I stepped out into the bright Oklahoma August day and spotted my Corvette as I donned my sunglasses to block the late afternoon sun. My high heeled shoes ticking along as I made my way across the parking lot. I mindlessly passed through a row of cars as I pushed the remote to unlock the car. The black Corvette had become unbearably hot, but I took no notice as I pulled open the long door. As I slid into the sleek, low leather seat and I imagined trying to explain this to my son. I thoughtlessly clicked my seat belt into place and planted my foot firmly on the break. The key slid easily into the ignition and I checked to rearview mirror to ensure it was in its proper place. I glanced at the air conditioner to ensure it was on high while I turned the engine over and it began to purr. My slender hand with long red fingernails gripped the gear shift gingerly due to the heat. I gently put the car into reverse and began to inch my way out of my parking spot. Thoughts were still flying through my head. How on Earth could I explain something that I didn’t myself yet understand?
I pulled up to the gate at the exit of the parking lot. Realizing that I had no idea where I had put the token to raise the gate, it dawned on me that I was going to have to pull myself together in order to ensure I drove safely. I found the token and slid it into the slot. It clinked as it fell into the machine causing the black and yellow arm to rise for my passing. I made a left turn onto the street heading toward the freeway. I noticed the radio playing some ridiculously sticky sweet pop tune which I would normally appreciate. I clicked the radio off; then cracked my window for a little fresh air. The mixture of heat from the outside mixed with the cold from the air conditioner was as confusing to my senses as my thoughts were to me. As I pulled onto the freeway I pushed my foot into the accelerator hoping to outrun this condition I had just been diagnosed with. For a moment, I felt the freedom of speed from the performance engine under the long hood before me. I pushed the silky engine faster along the freeway hoping to race faster than thoughts in my head. But I couldn’t escape this condition; I had to face this thing, this Arnold Chiari Malformation, type 1. My mind whirred like the tires underneath me. How is it possible that I’ve had this condition since birth and no one knew until just now? How come not one of my previous doctors had done an MRI until now? How come I have to be the one with the rare diagnosis? All of these thoughts kept spinning and I had no brakes to slow them down.
