Feeling like you have control over your body is something I’m sure most people do not even think about. When you want your hand to reach out & grab hold of something, you usually have control over your body to make it do just that. When you have to go to the bathroom, but one isn’t available most can usually control their body to wait until one becomes available. It is something that seems so simple, but yet it is something we just don’t truly appreciate even in the small or larger scheme of things.
My journey with chiari has been one of heartache, confusion, victories, defeats, and survival. One of the things I find most challenging about it all is control… I am a person who likes order and control. I want my body to do what it is supposed to do and I want to be able to rely on it to get me through the ordinary everyday tasks that have to be done. The pain manages to knock me off my feet & often, but through most of it I still manage to function at some level and accomplish the things I need to do, while wearing a smile on my face. Sometimes the smile is for myself, but mostly it is for appearance sake so no one sees the amount of pain I am in. I love people & I love being open and honest about a lot of things. But when it comes to chiari & my pain, I tend to keep that a little closer to myself. I don’t want anyone to see the daily struggle, because at the end of the day I am simply April… I am just me…no more, no less. I don’t want anyone to look at me with pitty or feel sorry for me, I am just me…I am dealing with all of this the best way I know how. I do what I can & usually more than what I should, because I refuse to let pain and other symptoms keep me down.
But there are times that these symptoms from chiari aren’t just about pain, discomfort, or being limited in doing things. Some strike pure panic & fear in you to your very core. There is nothing to compare what it feels like to not be in control of your body. The not knowing if I can brace myself against a wall & walk myself out of passing out. The fear of how people are going to react if I do hit the ground. The helplessness of not knowing what your body is going to do & knowing it can betray you at any given second.
Today I went to the store with mom. I get so tired of being cooped up in the house & it’s nice to get out even if it is only to a store to walk around for a few moments. I was simply looking at candles and mom nor I thinking twice about it she walked on doing her own thing. As I decided on the scent of candle I wanted I grabbed two in my hands & turned to go put them in the cart mom was pushing. As I turned I felt light headed, the room was getting darker and closing in on me. As I reached out to grab hold of mom to brace myself she wasn’t there so I grabbed hold of the shelf after putting both candles in one arm. It was pure panic… I was afraid of blacking out in public, I was afraid of the candles hitting the floor & shattering, what it would all look like, any commotion it may cause, and the list goes on. So I stood there; eyes closed bracing myself up hoping it would pass, but it didn’t. Taking a deep breath easing away from the shelf I began to take small steps toward going & finding mom to help get me through the store. I managed to find her after taking several breaks a long the way & used her cart to brace myself up to get through to the check out. And wouldn’t you know we ran into a wonderful friend I hadn’t seen in years. Of course nothing but smiles & a hug followed by “how are you doing?” In response I smiled and said, “I’m okay. Coping.”
But once I got home behind closed doors, away from everyone I just broke down and cried. I can say it is not fair to be young and have to deal with this, but it’s not fair no matter what age you are. No one should feel like they are not in control of their body. It is one of the most miserable feelings. A feeling that would make it so easy to lock yourself up at home to avoid making a scene in public, because your body just won’t cooperate like it is supposed to. It’s embarrassing to say the least. But you take a deep breath and you keep putting one foot in front of the other day after day. You manage somehow…you cope… you make it…against all odds you somehow make it.
This picture was taken before typing this blog. Amazing how we never "look" sick. If only it looked like what we felt...that would be pretty scary.
