The world at large does not have a thorough understanding of recovering from brain surgery. While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another. My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life. I have not achieved anything, and it makes for very awkward conversations.
Life is full of dreams. They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies. I felt this way last year when my doctor told me I would need brain surgery. Everything that I had worked for was snatched from my hand and I was left with what felt like nothing. I could no longer sing arias or even hold my guitar. And when I could hold the guitar, my fingers wouldn’t always cooperate. After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain. It has been the most comforting item during this period of my life. When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant. I may never go back to school. I may never perform a solo again. I may never be what I thought I would be. I will sing though, and I will imagine all the people whose hearts I could have touched.
I have spent the past five years getting surgeries and seeing doctors, first for my sinuses and later for my brain. I don’t get out much now and I am often just trying to get through the day. So, when I am able to get a quick appointment with a specialist, it’s probably the highlight of my day.
Even though I am aware of the cause of most of my headaches, I still go through a series of actions that under normal circumstances would alleviate a headache. Coffee is my go-to headache reliever. Before the accident, if my head hurt, it was usually because I missed my cup of morning coffee. I always remain hopeful that the coffee will help, but it never does. Then, food. I would get so busy with work and school that I wouldn’t have time to eat which resulted in headaches. Finally, naps are my last refuge. At the very least, hoping that when I wake up I will feel better, but I usually don’t. It often feels like something is exploding in the back of my head, and I just have to deal with it.
The hardest battle was getting the doctors to listen to what I was saying. I know my body and when something is not right. I also understand that doctors probably put up with people who want meds or are hypochondriacs. I also know that it felt like my head was going to explode at times and I feared going to sleep because it felt like I was dying. “EttpzO1iGs0w”
“EttpzO1iGs0w” Hi! My name is Michelle. I have Chiari Malformation and I had decompression surgery. If you have never heard of Chiari, that is understandable as most people have not. It happens in about 1 out of 1000 births but it is not always symptomatic. So, when I tell someone about it I tend to have an interesting conversation. I decided to start making little comics about these conversations and I hope that it will help people to understand what they sound like from my point of view. More than that though, I hope to give you a glimpse into the life of someone who has a hidden illness and is just trying to figure out life. Stick figure Michelle and Chiari brain will help me tell my tales. I will introduce them now and stay tuned for Saturday, July 23 when they begin their journey.