One of the many symptoms of Chiari Malformation is tinnitus. I notice mine more when my head hurts and it just gets increasingly louder until all I can hear is a chorus of noise. It drowns out the sounds of people talking, music, and the TV. I call it the sound of my pain and it is now just a part of my life.
Because I tend to look “normal” it is difficult for some people to accept that I fight against my body everyday. Most days I just take a little longer to complete a task, but at times, getting upright is a battle that I can’t win. This past Wednesday I had to go to the Psychologist for my disability determination. I woke up to a familiar stabbing pain that the base of my neck. My brain was (again!) trying to carry out it’s escape plan. The pain was enough to give me dark circles under my eyes, a poor outlook on the day, and I had to pee so much (a typical symptom for me). I went with my sister and my mom and explained to a complete stranger my illness, its unpleasant side effects, and how it has affected my life. It was an overwhelming hour. I think she got a good idea of how Chiari messes with your mind/memory/focus/concentration. Everyday, I wake up on the battlefield of life, fighting myself to save myself.
This is how I feel my brain responds when I see a noticeable change in the weather forecast. In many cases, I don’t even have to check the weather, I can feel in my head and neck the atmospheric changes.
I hate that the weather has so much influence over how I feel, but I try to make the best of it and find something that I can do that will bring me even a tiny amount of happiness .
“I can’t believe it’s been a whole year! I just got a promotion, what have you been doing?” “Surviving!”
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.
“Ooh, Monday afternoon? Wonderful!! See you soon! Bye!” “Sounds like someone has a hot lunch date!”
“I get to see a neurologist that specializes in memory AND he accepts my insurance!!”
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.