Personal Narrative: Living With Chiari

“Please God just let me wake up. I’m too young to go through this. What will happen to my children; who will take care of them? My gut tells me I am doing the right thing, but Lord, please show me your hand is in this.” I hear myself repeating this prayer over and over again. Undergoing the actual brain surgery is not what scared me; the idea I might not wake up terrified me. I’ve heard, “What does not kill you makes you stronger.” I never really thought much about the concept of becoming stronger through hardships until I was faced with a chronic illness, now I live by the motto.

It all started when I was 23 and diagnosed with a rare neurological disorder called Chiari Malformation. Chiari is a structural abnormality where the cerebellum,

This caused problems all over my body because of the pressure on both my brain and spinal cord. My symptoms were different every day based on what area of my brain was feeling the pressure. Needless to say, the biggest problem with living with Chiari is the symptoms.

At first, I struggled with a migraine or two per week. However, I blamed my headaches from the stress of having two young children at home. My headaches started out as what I thought were normal migraines until the frequency and the intensity of them increased. They were so intense my head felt like a balloon that going to explode at any moment. I would lie in bed most days thinking I was going to die from the pain. Because killer migraines weren’t enough, I also developed extreme nerve pain on the left side of my face, nausea and balances issues. I

I kissed my kids goodbye and hugged them tightly, not knowing if I would ever see them again. I thought my world was ending, I never thought I would have to say goodbye to them, and I couldn’t get enough hugs and kisses from them. I told them how much I loved them and I promised to come back to them, and when I did, I was going to be much better. I thought about my family throughout the day, and kept telling myself I was going doing this for them. After arriving at the hospital at 6 a.m., I was prepped and taken to pre-op, where I had to wait for my doctors to take my back. The wait was excruciating, I kept looking around the corner, anticipating when the doctors would walk through my door to tell me it was time. My surgery was scheduled to start at 9 a.m., but there was a delay and I wasn’t taken back until 2 p.m. When the surgeons finally came into my room and told me it was time, my anxiety was off the charts. I barely had enough time to say goodbye to my husband and my mom before the anesthesiologist put twilight medicine in my IV, I don’t remember anything after that. Later on, my husband told me I was crying as the surgeons rolled me down the hallway and saying how much I loved