Two people asked me if was writing something tonight. The one who was related to me actually whined about it. The problem is that on Friday I started working 11 to 7, which isn't bad, but it just upsets my delicate sensibilities and stuff so I don't feel like writing or doing much worth writing about. I did ride my hand-trike for the first time in a while, but that is all, so I started looking through my past writings.
I have Friedreich's ataxia. Usually, I am accepting of this. I don't get, though, why God doesn't nudge some DNA around so I don't get worse. Surely, the world is better off with me actively engaging it.
In the Bible, Jesus cures a leper. How, I always wondered, did that make the other lepers feel? I'd have been a little pissed.
“I remember when I got leprosy. First, it was just some sores on my stomach. I prayed to God that nothing else would happen, though I knew in my heart they were the start of leprosy.
“When I lost feeling in my foot, I prayed to God that that would be the end of it. ‘God,’ I said, ‘I have sores on my stomach and now I can’t feel my right foot, please, God, let it get no worse.’
“When my eyelid fell shut and no muscles would hear my plea to open it, I prayed again. ‘God,’ I begged, ‘I can live like this. Maybe not entirely happily, but I can live like this. Just please, please, don’t let it get worse.’
“My skin started cracking soon after as my body seemed to cry out for water it was so dry. I was driven out of town then because I could no longer hide my ailments. I turned again to my God. This time I screamed at God. ‘Are you happy? I am alone; I am scared; I am abnormal. I ask you again, Are you happy?’ And I filled the air with curses as I gave voice to my anger and fear. Then, I added: ‘Please, my home has been stripped from me. I have nothing, God, but I know I can survive as I am now. My disease pains me and loneliness tears at me, but I have books and papers and can be relatively happy.
“Then my left hand started losing strength and soon it was no more than a claw. I could hardly hold a book to read. Then I prayed again. ‘God, I know you exist and everything I have ever heard tells me you care, so why are you doing this or letting this happen? I know that it was nothing I or anyone did. I know I have not been cursed, but I feel damned. What is to be gained from this?’ And again I flew into a rage, filling my lonely hut with my cries of anguish and my sobs of fears.
“And God never answered. God never told me why I should suffer. I am supposed to believe that God is here, going through everything with me. God is beside me, loving me, urging me on, picking me up when I fall. But how am I supposed to believe that when my skin is falling off my body like mud, when my eye is forced closed? This is the act of a loving God?
“Again and again, my howls send their lonely calls throughout the night, and I curse and yell for a cure or at least an answer. Then after my tears have run dry and my wails have quieted and sobs no longer rack my body, I just ask not to get worse, please.”
Sunday, August 15, 2010
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5 comments:
I love when you write. You are so good at it. And you are so bold and honest. I feel the same way that you do about these stories - I don't understand. And nothing follows that statement for me - usually, there's a "but," - not for me. I'm thankful you are in my life.
yes, indeed - the world is surely better with you engaging in it. your pain is palpable, my friend. i'm here. i wish i had more.
I don't know what to say, Matt, except I'm glad you wrote it. (and I'll keep wishing.)
ok...so I am sorry I asked. But since I can't fix it all I can tell you is this...
"Oh, my brother
won’t you stand here beside me
we shall carry each other
and should your soul grow weary
or the strength leave your bones
oh my brother
I will carry you home"
--Eddie from Ohio--
xoxo
ejd
Thanks, Shannon, Jess and Ellen. Not the :Eddie from Ohio" card! I can't beat that.
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