Every so often life reminds me of how lucky I am. Today, I read an article about George Clooney and his experience with Chiari. And while he has yet to actually say what he was diagnosed with, many people believe it is Chiari. In the article he discusses the injury on a movie set that led to his decompression surgery. But what touched my heart is when he admits that he considered suicide. He admits that the pain he was in and the fear that he had, clouded his judgment so deeply that suicide was an option. For such a successful man to be able to admit that publicly is an inspiration. Now 6 years later he still struggles with the condition but he didn’t give up. I know all too well how he feels….
My Dark Place:
The weeks leading up to my surgery were nothing short of pure terror. There were days that no matter how many people loved and supported me, I felt completely alone. I can honestly not even begin to count the number of nights I spent crying alone on the bathroom floor as my children slept. Praying for help but refusing to let anyone help me. I was so blessed to have a great support system but I would not let them in. The truth is, during those moments, I too wondered if it would be easier to just slip away. The fear of the surgery is something no words can do justice. Surprisingly the fear of death wasn’t always the hardest part. Of course the thought of not being there to raise my beautiful children was traumatic. But in all honesty I was afraid of surviving. Many Chiarians suffer through multiple surgeries with no clear improvement in life. Some are confined to wheelchairs and unable to take care of themselves. Some suffer so deeply that they cannot ever go back to the person they were. The fear of becoming a burden on my friends and family was terrifying.
Blessing in a Storm:
Two weeks before my surgery I received a blessing. My children were with their Dad for the weekend and I of course had no DL. I longed to go to the beach and just relax. Out of nowhere and in a conversation with someone I barely knew, he offered to take me. He knew a little bit about what was going on and said I should have the chance to go to the beach one last time before my surgery. It was in all honesty one of the most amazing days I have ever had. We traveled up the California coast and it was breathtaking. The next night however was breathtaking in a different way. That night, as I was tucking Kylie in, I experienced another panic attack. I ran to the bathroom, turned on the shower and completely lost it. Several times during that moment I considered “other” options. It brings tears to actually admit that. The fear and pain that I felt were so overwhelming. Then, well after 9 PM, after a good hour or so of continuous sobbing, and after praying for a sign that things would be ok, my phone beeped. It was a text message. All it said was, “Hey Amy, you ok?”. It was from Jason and for the first time since finding out I needed surgery, I admitted that I was not ok. He quickly arrived at my house and sat on the floor next to my couch as I cried for hours. We watched a movie and before I knew it, I woke up on the couch and he was gone. He continued doing that every night until my surgery. Never once asking for anything, just spending every free moment he had making sure I was ok. He never once left my side. A few days before the surgery I introduced him to Niko and Kylie and he asked them if he could take us all to the beach. It was truly an amazing day. He was there when I was wheeled out of ICU at Stanford and again never left my side. He nursed me back to heath, took care of the kids and the house and made sure that I was given every med that was prescribed. He had no idea of how the surgery
would turn out. Whether I would suffer permanent brain damage or not. He was almost a stranger who stepped up when I needed it the most. The road to recovery was not easy. But it was blessed. Now when I look back at that night on the bathroom floor all I can do is smile. In my most desperate moment, when I felt like the world was crashing down on me and when I considered an option that would have left my children without a Mother, I found hope in a text message and a man I barely knew but would grow to love.
Today, while reading that article I cried. I understood, all too well, what Mr. Clooney was feeling. I understood the fears he faced and the pain that he suffered. I have experienced the depression that comes with being diagnosed with a condition that has no cure. But I survived. Some do not. If I could, I would thank Mr. Clooney for his honesty. For allowing his weakness to show. It inspires me to do the same. To hopefully serve as another voice of encouragement in the storm that is Chiari. We may not have a cure, but as long as I am alive, I will continue to raise awareness. Not just about Chiari to people who might not know what it is, but to raise awareness to those with Chiari. Those who are suffering. To stand up and say, that yes, I have suffered deeply. I have felt so low that death seemed like a viable option. But I am still here. I am still fighting and no matter what, I will not give up. And if you are reading this and need that encouragement, I am here for you. You are not alone.
