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There’s a certain slant of light,
On winter afternoons,
That oppresses, like the weight
Of cathedral tunes.

Heavenly hurt it gives us;
We can find no scar,
But internal difference
Where the meanings are.

None may teach it anything,
‘Tis the seal, despair,-
An imperial affliction
Sent us of the air.

When it comes, the landscape listens,
Shadows hold their breath;
When it goes, ‘t is like the distance
On the look of death.

Let Me Explain Something To You

It’s a link. Click On It.

Facts:

  • I am disabled, despite the fact that I look fine
  • When I was in middle school, I couldn’t even walk up and down stairs without crying because my joint pain was so severe
  • my knees used to dislocate multiple times a day, and through my tears I popped them back into place myself
  • I still can’t really kneel properly without fear, and I actively work not to slap people who thinks its funny to squeeze my knee caps
  • Up until Junior year, my friends and teachers and sometimes family thought I was a hypochondriac or lying for attention
  • I am grateful that I have type 3 and not a different form of EDS
  • While it could have been a lot worse, and I function pretty well, these symptoms get really bad sometimes
  • I have 15 of the symptoms listed, and several that aren’t.
  • EDS symptom lists explain how I’m not crazy, and I’m not over-exaggerating
  • I don’t think about the fact that I’m disabled until I realize normal people don’t deal with these symptoms
  • While I don’t often use my 504, and I like to pretend I don’t need it , I really do need certain accommodations
  • I missed so much school my junior year(40 days), that my Math teacher told my class I had AIDS. She was joking.  But the rumors circulated. It was awful.
  • I used to wish I had cancer or a well-understood disease, so people would respect what I was going through instead of spreading rumors that I was faking or skipping
  • I missed 80/180 days of school my senior year
  • I’m insecure about this, because people act like I’m getting away with something or getting undeserved special treatment, even though I deal with a ton of physical pain others will never experience
  • I do not have a “Golden Ticket”; I’m in constant fear of failing my classes because of lack of attendance/late work
  • You would NEVER KNOW from looking at me what my body puts me through on a daily basis. Don’t judge people. You have no idea what they are going through  by their appearance or even their behavior.
  • There IS such thing as a brave face.

Growing Pains

It feels like every day this week, I have had to re-evaluate everything. And let me make something clear. Individual paradigm shifts are massive emotional headaches. That sentence makes sense, I promise. But really. In the last week (since last Friday), I have learned so much, my head could explode. I have cried so much, my tear ducts should be fried. I have thought so much, my brain could expire. I have prayed so much, I should be out of words. And yet the information, the tears, the thoughts, the prayers—they all keep coming. Rushing together around me, lifting me off the ground until my feet almost forget the daily grind of shoe on concrete. And then they hurl me to earth, crush me under their weight, overwhelm me with their multitude. A few times, it has past the breaking point, and I have shattered with fear that this time I am beyond repair.

And yet, I am repairing. I can feel the mending, the growing. I have changed so much since last Friday. To be honest, it’s a little terrifying. Too fast, too fast. My momentum is building, and as my speed increases so does my fear. And yet I’m still moving forward. This week I have shared my faith with strangers and friends, lost an election, walked into the light, told the truth, studied for exams, seen a play, and so much more. I cried more tears than I dared count. And yet something is changing. I can feel it. I am being made new. And it is terrifying. But it is also exhilarating. God is moving powerfully in my life. He is refining me by fire. And he is doing it so quickly, I almost didn’t see it. I’m overwhelmed. But a part of me is also curious. I like where this is going. Where is God going to take me? Somewhere I will be wiser. Somewhere I can become stronger. Somewhere I can make a difference.

God, I trust you. I’m scared and I’m scarred. But I’m ready to grow.

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