Wednesday, May 2, 2012

Harsh Realities

Today I am reminded of the harsh realities of my Dystonia. It doesn't matter how good my grades are, how well a date went, how happy I'm feeling over all the feedback and responses I have been getting from this blog.
I still hurt.
I went to the dentist today and as I'm sitting in the chair waiting, I could feel the head rest pushing on the back of my head and immediately knew a spasm was coming. Of course no one could tell that I was in pain, that's the sneaky thing about Dystonia. I can hide the day to day pain I feel fairly well, I have had a lot of practice. It was miserable though. I feel like I am a puppet and someone is tugging on certain parts of my brain that causes my muscles to fight over control over my body. But it's all internal. The Botox treatment hides/eliminates the physical manifestations from the outside to a certain extent (for now), but inside I still feel like I'm dying. It's my BRAIN. And I can FEEL it.

It's so disorienting. It's worse when I have a week of feeling fantastic, and then one thing happens and I am reminded that I have this disease inside me and sometimes it completely breaks my spirit. I try not to let it but it's days like this where all I can do is cry and carry out my day as long as I can before I have to rest my head. 
I was in a very iffy place with God the first year I was diagnosed. I believe that I went through, and continue to go through, the 5 stages of grief. I feel like part of my spunk was rudely ripped away when I was diagnosed; like the youth part of my spirit died and I have aged well beyond my years before I was prepared for it.
Denial: "It will be a quick recovery"
Anger: "My plans are ruined"
Bargaining: "How the hell am I supposed to do more with less?"
Depression: "Keep calm and carry on"
Acceptance: Freedom. For me personally, this means finding freedom in God and putting my life in His hands. By no means is this easy. I have days where I ask God why? Why me? I'm asking the wrong question. Okay God, this horrible thing has happened, now what do you want me to do with it?

It is hard for me to pinpoint where I am at; I feel like I literally switch between the 5 stages depending on the day, because every day is a different day than the one before. Yesterday I felt great; got through a 12 hour school day without any issues; today sitting in class felt like hell. I fidget, fighting to get comfortable. If I relax my body or try to sit back in a chair, my neck starts tilting backwards or to one side and the amount of pressure in my head and neck is unbelievable. God, it hurts so bad. Sometimes I wonder why I am in school. It's so hard for me to just sit in a classroom. Maybe it's my stubbornness or the fight in me-my determination to live as normal of a life as I can. However, my quality of life is pretty poor. It could be worse, but who am I to put suffering on a scale? Suffering is suffering. 
Treat others how you want to be treated. Simple as that. No one's pain is greater or less meaningful than my own. I don't ask for special treatment. If anything I need to ask for help more...there is nothing wrong with asking for help. A very hard concept to wrap my head around; I have a very independent  spirit that feels locked up inside this disease sometimes. I'm fighting to be free, but the point is that I'm FIGHTING. Fighting for others out there. Fighting for a normal life. Fighting for myself. Fighting because God would not expect anything less of me. But He is here on this journey with me, always has been and always will be. I know we all have different beliefs; this is just my personal belief and source of strength. 

I found out the other day that my name means "Leader of the people." I feel like I have always been the shy one on the sidelines and I have willingly let other people outshine me; friends, boyfriends, family, whatever. Not something that I am bitter about because I am a relatively shy person and do not like being in the spotlight. But maybe being a leader is what I was MEANT to do. I think God has HUGE plans for me and I just wasn't prepared for it. 
So I am defeating stage 3 in the 5 stages of grief and I am consciously making the decision to do more with less. We have no control over the cards life hands us, we really don't. Our stay is so fleeting, so temporary, why wouldn't I try to make a difference while I'm here? I suffer daily and my heart hurts and sometimes I'm so absolutely terrified of what will become of me in a few years that I can't even breathe, but I don't want to be bitter about my situation. 
God didn't do this. He wants me to use this tragedy for the greater good; to help other people and be a voice of comfort and let people know that you CAN overcome your biggest battle. The pain might not go away, physical or otherwise, but never give up on yourself. You have the power to take the most painful thing that has ever happened to you-the thing that hurts your heart so bad you feel like suffocating-and turn it into something useful and good. 

So today was a hard day. Physically and emotionally. Maybe tomorrow I will feel better; maybe I won't. It's okay; it won't break me. Harsh realities about living with Cervical Dystonia; it doesn't take a day off.

During the lowest times of my 
life I could only see one set of footprints,
so I said, "Lord, you promised me,
that you would walk with me always.
Why, when I have 
needed you most, 
would you leave me?"

The Lord replied, "My precious child,
I love you and would never leave you.
The times when you
have seen only one set
of footprints, it was
then that I
carried you."

"The best day of your life is the one on which you decide your life is your own, no apologies or excuses, no one to lean on, rely on, or blame. The gift is yours-it is an amazing journey-and you alone are responsible for the quality of it. This is the day your life really begins." -Bob Moawad

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