This is Day 26 of the Positive 100, a countdown to Rare Disease Day 2014 and an exercise in being positive despite it all.
We all have rough patches and days we wish would just go away. There are times in our lives that we where we start to be worn down. You know the days. When you feel like you are just treading water and it is just getting harder and harder to keep your head above the water.
These struggles aren’t your life’s knock-down, drag-out fights. These aren’t life defining battles. They are the smaller things. Sure, they shape and change your world view. And they are a pain in the tukus.
When you come out on the other side of the struggle, you have a victory. Your skies are clear. The world is a bit brighter.
There are a few things I struggle with. Not the trivial kind of struggle that is picking out Christmas gifts. And they aren’t the battles I am fighting with my body.
My biggest current struggle is with my desire to feel normal. I just want to be a normal nearly thirty year old lady. I don’t like that I have to set reminders on my to-do list to take pills multiple times a day because I don’t remember to take them and when I do take them, if I don’t write it down I am likely to repeat a dose.
I struggle with the ramifications of having to be a cyborg. Having to literally charge once a week takes its toll. I am young and have to ask for a wheelchair through the airport because I can’t stand for more than a couple minutes. I can’t kneel at church and the little old ladies look at me as if I were just being lazy.
And while I struggle, and some days these things will drive me to tears, I am still treading water. None of these things are going to defeat me. They’re not big enough to. They are enough to eat away at me and to put clouds in my sky.
Some days I don’t want to have to wonder how I am going to explain to someone I started seeing that they can’t touch my left leg or what those scars on my back are from. I am going to have to. I don’t have a choice. I can’t just ignore it.
I am going to keep wrestling and I am going to win some of the rounds in this fight, and lose others. I struggle and that’s ok.
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