There are plenty of questions that linger after Chiari Decompression, especially if your life doesn’t return to normal. My friends often can’t understand that my brain can no longer do the things that it used to be able to, and no amount of believing in myself changes that. Then I question my autonomy. Will I be able to be a productive adult for the rest of my life? Will someone have to keep an eye on my finances and everything else to make sure I don’t become destitute because I can’t remember to pay bills? What kind of life does that make for me? Is that a life worth living? What if there is no treatment plan that will take away my symptoms? Will my friends tire of having a “sick-friend” after a few years? How will this all affect my self-esteem? Will I be able to live with myself and not resent this brain of mine? Will anyone ever be able to love someone like me? What If I deteriorate? Would it be fair to the other person in 20 years?
Unfortunately, it is easier to ask the difficult questions and languish in self-pity than it is to be bold and confront the new normal with a big smile and only the expectation of adventure. I am a Christian. I regularly attend my church. I am in ministry inside and outside of the church. I love Jesus, and I believe that all of this is happening for a reason, but that doesn’t mean I don’t think and process life like a human. I particularly deal in grief and the grieving in ministry and it has given me a much wider perspective about what I am going through.
I have lost a lot of my life and I am sad about it. Of course I have days where I am overcome by the magnitude of how different I have become. And -this- is what people don’t understand: I am fundamentally different than I was before my head was opened. I don’t even think like I used to, but I have memories of thinking and being a certain way. My emotions are foreign invaders which have occupied my mind and now everything is filtered through them. My drive to accomplish and accumulate had turned into a drive to love people and give away what little I have. And this is just the beginning of the changes brought about by Chiari and the surgery.
So, when I feel sad, I try to find someone that I can help, so that I am not focusing on my own problems. When I can’t remember my worth, I study the Bible and I am reminded that Jesus died for my sins. When I wonder if I will be able to take care of myself, I remember that I have a loving family that always keeps my best interests at heart. I may have to deal with pain and uncertainty, but I will try to do it with a smile and the expectation of adventure a little more.