My Journey with Chiari, Part 2

Welcome to part 2 of My Journey with Chiari.  In case you missed Part 1, you can find it here. I encourage you to read part 1 prior to reading part 2 but it’s impossible for me to force you to do so.  In any case, I hope you enjoy it no matter what order you choose to read it in.

Diagnosis, Part 2

As I drove the familiar highway through Oklahoma City, I instinctively took the exit leading to my parent’s house instead of continuing down the highway to return to work.  I knew that I needed to inform my parents, as well as, to be reassured by their support. They still lived in the home I had grown up in. It was the only home I’d ever known and it is still remains the center of my world today.  Even though, I tend to be a bit of a gypsy floating from one place to the next; their home has always been North on my internal compass. There is a sense of resounding peace that calms my soul unlike any other place I know. It’s not a fanciful or magical place. It’s just modest home that my parents have nurtured with love for well over forty years. It is tended with such love that one rose bush, which was purchased along with the house, is still thriving. My parents have grown older and wiser but they have not changed. They both worked hard to provide a comfortable life for their family and they had been able to retire just a few years earlier. We were always a close knit family because they led by example. They are still very much in love today as the day they were married. My parents weren’t afraid to express that sustaining emotion to each other or to their two girls. Subconsciously, I must have known that I needed to seek solace with my parents more than I needed to return to work.  I hadn’t even given thought to making that exit. It happened as easily as breathing. I had taken this exit thousands of times and it felt good to send the Corvette sailing around the tight corners of the exit.  The car smoothly floated by the new hotel and the old, abandoned gas station. The retirement community and apartment complex drifted by my window without a thought. After lifting my foot from the accelerator and gently pushing on the brake pedal, the engine slowed in order for me to turn right onto the adjacent street. Feeling the car follow my lead was relieving. The car was, at this moment, the only thing within my control. It was comforting to have such an powerful piece of machinery at my fingertips. Right now, I needed to find this same sense of power and control over myself before I told my parents about the results of my MRI and this perplexing condition.

I let myself into their house to find them sitting at the dining room table having just finished lunch. They were surprised to see me in the middle of a work day. I pulled up a chair and joined them at the table. After making a bit of small talk regarding their lunch, I explained that I was returning from my doctor’s visit where I discovered the results of my recent MRI. My Mom looked eagerly at me with raised eyebrows, “And?” In my head I couldn’t find any words that felt right; so I opted for humor. It usually served me well when I was in tight spots.  I was also trying to convince myself that if I kept it light then this condition couldn’t be that serious. “You know how you’ve always said that you wanted to have a healthy baby and were blessed because you’d gotten me? Well it turns out that I have this rare birth defect, so you kinda screwed that up,” I said flashing her my cutest grin. My Mom’s jaw dropped and she tried to look hurt. She closed her mouth, indicating that she had no rebuttal; but then she realized that this meant that I wasn’t healthy. Her hurt quickly turned to confusion. We sat there looking at each other for a moment, silently. I went on to explain what I knew of this condition and that it’s not uncommon to discover this birth defect until a person, typically woman, turns twenty or thirty. They, of course, had tons of questions which I could not answer.  I shared the printout with them which contained an MRI image showing how a portion of the brain grows down and out the rear base of the skull and into the top of the spinal canal. I explained that I didn’t yet have any answers that weren’t located on these few sheets. I told them that my next step would be to see a neurosurgeon to determine if I would be a good surgical candidate. We would have to wait until then to determine what this would mean for me long term. I explained that I was just as confused as they were. After half an hour of questions with no answers and lots of headshaking, the three of us were all left in stunned silence. After several hauntingly quiet moments I rose from my chair and explained to them that I needed to go to my work to advise my boss to expect my needing time off to properly care for this condition. I agreed to keep them informed as I learned anything new and they told me that I could call them if I needed anything. I hugged them both and told them that I loved them.  I gave a  quick  wave as I stepped out their door to make the short drive to work.

When I arrived at my boss’s office she knew that something was wrong. I wouldn’t normally show up at her office in the middle of the afternoon. I tried to smile as I seated myself in an empty chair across the desk from her. I have only been working for her for roughly six months, I had transferred to Oklahoma from a branch in Texas. I knew that she was pleased with my management of our small travel office and I was not yet sure how this diagnosis would affect my employment. I loved my job, I love my customers, I loved my office, and I adored my one single employee, Alisa. I didn’t want to be here, in my boss’s office, explaining this unexplainable condition to her. I didn’t want to have this condition to explain to her. I didn’t want this condition to affect my performance or my position. I had worked for sixteen years as a travel agent to become manager of my own office, even if it was a small office with my singular employee. I had hired that one employee and I didn’t want to let her down. I didn’t want to let myself down. I didn’t want to let my customers down. In the six months that I had managed the office my customers had come to rely on me, my skills, my humor and my hugs. So as I sat there across from my boss, I tried to tell myself that I had nothing to worry about. It would never come to that. I would not let anyone down. I would be able to overcome this diagnosis and continue on with life as normal. Couldn’t I? I brushed aside my thoughts and went on to explain to my boss that I had just received the results from my MRI. I gave her the details of my diagnosis from earlier that afternoon. I explained that the worst case scenario would be that I might need some time off for surgery but assured her that I would have Alisa prepared to handle the office on her own should that need arise. She reassured me that they would do whatever necessary to help me get through this situation. That my health was the most important factor and that I shouldn’t worry about my office.  I explained that I would like to take the remainder of the day off to wrap my head around this news and to inform my fifteen year old son. She was in agreement that I should give myself the afternoon to do what I needed to do. As I rose from my seat, I kindly asked her to call Alisa and explain that I wouldn’t be coming back and that she should do the daily reports after closing. She agreed that she would notify Alisa of what needed to be done. She also reminded me that I’m a strong person and she was sure I can conquer this condition. 

As I walked away from her office it did occur to me that I had already had this condition for thirty-six years. I stepped through the entry vestibule and pulled the door leading outside.  The heavy glass door sounded off with a big ‘whoosh’ as a blast of hot summer air swished across my face. Dr.W had said that this is not fatal; maybe, I could live a long, happy, albeit not healthy, life with condition. The big maple in front of the entrance rattled it’s bright green leaves above me as my heels clicked along the sidewalk toward the familiar black Corvette. 

The drive home felt much longer than usual even though there was no traffic. Rush hour was at least another hour from now, even still I chose not to take the freeway home. The route home is an odd combination of city and farm, urban and rural. Although I drive past restaurants, gas stations and other businesses, none of it catches my eye. Soon I am passing farm houses, plowed fields and cattle pastures as I seem to float over the low rolling hills. The commanding engine pulling the long, lithe car up and over each crest, giving the sensation of flying. But none of these things play in my mind; I am still thinking about my condition, my malformation. Arnold Chiari Malformation, type 1. I might as well get used to hearing it and saying it. It seems that Chiari is my new companion with a lifetime guarantee. Terms like cerebella, tonsils, hindbrain, and foramen magnum will become my new vernacular. The Corvette slid gracefully over the hills as pushed my foot a little further into the accelerator in order to get home and sit in front of my computer. I wanted to read and learn everything I could about Arnold Chiari Malformation.