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may God stand

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December 27th, 2014

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may God stand


My Dad is unresponsive, according to my mother.

He's been so changed, for so long it's almost like he's an entirely different person. Or as if he'd left this world, and come back unable to communicate what happened, what was wrong. Lewy Body Disease means that he sees things that I don't. He hears and responds to a whole different reality. So you'll need to accept on faith that my father, my Dad was *nothing* like this skinny man with the rough, knotted fingers that pick at the covers, and his wandering eye. My father always spoke clearly. He was *amused* at people who went on at length. "More full of bullshit than a brass band" he'd say.

My Dad believed people were essentially good. He tried to treat almost everyone politely, in friendly fashion. He believed that experiences were important. I remember him taking me to the ocean. Carrying me down to the water, so that I could feel the water. I never saw the wave coming. It knocked me clean over, and washed over me. For one terrifying second all I could see was water and foam and light. I hadn't had time to take a breath. My stiff arms were waving in the air. Then he came and jerked me out of the water. "All you could see was teeth and arms" he said. It took me a long time to accept that for Dad, making jokes was the only way to cope.

There were things I hated, sure. Getting rousted out of bed on Saturday at almost the same time as a schoolnight so I could do *chores*. Pulling grass out of the orange tree wells by *hand*. Not that it was hard. I was so *bored*. But there were other things. The rides on his motorcycle out into the desert. The times when he'd let me keep him company in the garage, while he worked on his car, and he would talk about..oh, anything. Going for rides in his MG, and feeling the wind rip through my hair. He'd let me wear his sunglasses. The one time before a hell of a lot of surgeries and time'd gone by..when he helped me up, and braced my back against his leg. For the first and only time in my life, I was standing with my Dad.

More than anyone, my father believed that you could recreate yourself. He never went to college. He went into the military, so that I would have the medical care that I needed and that my parents couldn't afford. He went to Vietnam, and he changed a lot. I'll never know what kind of person he might have been if he hadn't gone. But I do know that my dad believed that with enough determination, you could do nearly anything. We went through dozens of moves, surgeries, accidents, emergencies..and my dad *did* recreate himself. He taught himself to fix air conditioners and heaters. He worked for the school system doing that, and he came home with stories of gently teasing new generations of school kids. He was there, for neighborhood kids if they wanted to talk. He had a specially made bike shipped out to England, and he taught me to ride on it. Just so I could know what it was like, to be on a bike like other kids. He loved learning, loved it for it's own sake, and tried to teach us to love it too.

He wasn't a saint. Nobody is all good or all bad. But this isn't the place for me to go into what he did or didn't do right. He tried to teach us how to face the world with dignity. To be unafraid of hard work. To be *alive* to the world. He was at best agnostic. But I think he saw God in human beings.
Thank you, Daddy. For all the drive in movies in our pyjamas, and the hours of lying on the car hood, out in the desert to watch the fireworks. For all the times when you made us lunch. I love you.

Greek.

December 16th, 2014

So..our mattress shifts a little every time I get in and out of bed. Or whenever the husbnd gets in or out of bed. I have to get out of bed at the end of the bed, because I can hand onto the hwheelchair. Yeah, it's complicated. Cerebral Palsy is just weird all right? So the mattress was shifted too far foward, and voila. I couldn't pull the chair close enough to me to get to my feet. When I sat back down, I sat on the part of the mattress that was hanging over, and I couldn't get my feet under me. I couldn't scoot back. I couldn't reach anything. So I was stuck there, until my husband came home from work at five pm.

Talk about freaking BORING.

And the revelation that..no. I *can't* live alone. I can't take care of myself without fear of accident.

Shit.

I'm not scared, I'm *mad*

Mad at myself because somehow somewhere I must have screwed something up badly to get so used to this living with him. I need to be able to live by myself. I don't need to live by myself . I need to be ABLE to do so.

Okay, yeah, mad *and* scared.

Like Mr Bennett, though..this is my sowing what I've reaped. I ought to be scared and mad. It'll pass soon enough. Maybe I can actually work some changes out of it.

Crap, everything hurts *already*. I'd have thought it'd wait until the next morning out of respect.

December 15th, 2014

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I'm starting to understand why people do it. It isn't that there's always a big overwhelming wave of disaster. Just a slow dark seep. People leave. Other people don't want to know. They just don't want to hear it. There's nowhere to go. So you go, and you go. You do your best to keep it all shovelled into one spot, and keep it moving.

I don't want to see him like that. His hands swinging like skill-cranes operated by blind men. Picking at the covers. He makes no sense. He cared so *much* for learning. For speaking well. He taught himself a thousand things, and they're all gone now.

The depression is like a flood, that slips under doors, and through the walls. You don't think it's there, but it's always advancing. Making the ground you stand on smaller and smaller.

The only time I feel normal is when I sleep.

December 1st, 2014

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Learning about MZB was a blow. Yeah, I didn't know. Now to learn there are other heroes with feet of clay? It just hurts.

Too long away from LJ, and reluctant to move to Twitter because I'm just too damn wordy to feel comfortable in the land of 140 characters. Also, in a strange way it feels like the world is shoving and pushing to move faster and faster, to pare everything down to the smallest, simplest bits. Until we stop using words at all and just emoji at each other.

Ordinarily I'd happily launch into a lamentation over the death of heroes and the end of ideas but not today. Today I'm just afraid to look up to anyone for fear of what I'll see and can't unsee

November 29th, 2012

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This walloped me today.
http://www.youtube.com/watch?v=yb2nMvOOsO4

July 21st, 2012

Be always with Christ.

2. Pray as you can, not as you want.

3. Have a keepable rule of prayer that you do by discipline.

4. Say the Lord’s Prayer several times a day.

5. Have a short prayer that you constantly repeat when your mind is not occupied with other things.

6. Make some prostrations when you pray.

7. Eat good foods in moderation.

8. Keep the Church’s fasting rules.

9. Spend some time in silence every day.

10. Do acts of mercy in secret.

11. Go to liturgical services regularly.

12. Go to confession and communion regularly.

13. Do not engage intrusive thoughts and feelings. Cut them off at the start.

14. Reveal all your thoughts and feelings regularly to a trusted person.

15. Read the scriptures regularly.

16. Read good books a little at a time.

17. Cultivate communion with the saints.

18. Be an ordinary person.

19. Be polite with everyone.

20. Maintain cleanliness and order in your home.

21. Have a healthy, wholesome hobby.

22. Exercise regularly.

23. Live a day, and a part of a day, at a time.

24. Be totally honest, first of all, with yourself.

25. Be faithful in little things.

26. Do your work, and then forget it.

27. Do the most difficult and painful things first.

28. Face reality.

29. Be grateful in all things.

30. Be cheerful.

31. Be simple, hidden, quiet and small.

32. Never bring attention to yourself.

33. Listen when people talk to you.

34. Be awake and be attentive.

35. Think and talk about things no more than necessary.

36. Speak simply, clearly, firmly and directly.

37. Flee imagination, analysis, figuring things out.

38. Flee carnal, sexual things at their first appearance.

39. Don’t complain, mumble, murmur or whine.

40. Don’t compare yourself with anyone.

41. Don’t seek or expect praise or pity from anyone.

42. We don’t judge anyone for anything.

43. Don’t try to convince anyone of anything.

44. Don’t defend or justify yourself.

45. Be defined and bound by God alone.

46. Accept criticism gratefully but test it critically.

47. Give advice to others only when asked or obligated to do so.

48. Do nothing for anyone that they can and should do for themselves.

49. Have a daily schedule of activities, avoiding whim and caprice.

50. Be merciful with yourself and with others.

51. Have no expectations except to be fiercely tempted to your last breath.

52. Focus exclusively on God and light, not on sin and darkness.

53. Endure the trial of yourself and your own faults and sins peacefully, serenely, because you know that God’s mercy is greater than your wretchedness.

54. When you fall, get up immediately and start over.

55. Get help when you need it, without fear and without shame.

March 28th, 2012

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I don't usually spend a lot of time wishing I was a child again. Truth to tell, I don't feel all that grown up now. Today, I wish I was seven again. Old enough to remember the way it felt to feel my father's knee against my back. So dizzy and scared. I'm gonna fall, Daddy. I'm gonna fall.. And his voice came back so clear and comforting. "No you're not. I've got you, I won't let you fall. I'm right behind you."

I was *standing*. Just like Trish and Melinda, just like all the other kids in the neighborhood. Without braces, or crutches or anything to mark me as different. Even if the only way I could do it was with my Dad supporting me, leaning against the knee he put against the small of my bony little back. It didn't matter, it was me and Dad and we were standing together.

When I was younger I didn't like to look at that picture. I used to think that somehow my dad was ashamed of the braces and the wheelchair, all the paraphenalia of my handicap. That he didn't want a kid who was different so he had to pretend. It was hard to look at that photo, as innocuous as it is.

Now I know that it wasn't anything to do with being ashamed of me. It was just like his taking to the ocean. Like his taking me to Salt River canyon even if I was in a cast up to my belly button. He wanted me to experience everything. He didn't want me to miss a thing. Even what it felt like to stand up, alone.

Now my father's drifting away, swept further and further out to sea. The future and the present slip further and further of his grasp, and he's left with all the broken pieces of his past. He sits sometimes, and looks at nothing much, surrounded by a group of amiable strangers, in a place that he finds somewhat familiar.

It doesn't matter Daddy. I remember. I am here, and I'll hold down my corner of the past, and keep it warm and alive with you. I don't have everything, there's a whole lot of your life that I wasn't a part of. But the part you shared with me, I have, and I cherish it. Each of us will keep our little pieces alive and burning. Maybe this is something we need to experience together, this slow dissolution. It's hard to let go of you, Daddy. It's hard to watch you let go of all the things I thought were such an integral part of you. But I've learned something too..nobody can take your dignity away from you. If someone else thinks it's gone--that's them, Dad. Not you. I love you. I'm so proud of you. You were a good Dad. And you still are. Still showing me stuff I need to know. Stuff I need to experience. I only pray that I'm brave enough to see what you're showing me, without trying to hang onto what was so hard.

March 13th, 2012

BWAHAHAHAHAHA...

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http://www.thedaily.com/page/2012/03/12/031212-news-tide-theft-1-4/


I don't get it.


But apparently no one else does either.

*waves to *Shadowycat*
I hope you have a fantastic day. I am doing a bit better, but I expect the instant I dare have anything vegetable I will end up in the same navel-gazing formation. Perhaps it toughens up the insides. Chuck Norris will respect my colon.

February 12th, 2012

Poor Whitney

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And her daughter.
I enjoyed and admired her voice. I hope that she fell asleep in the Lord without pain or fear, and trusting in God.

I guess everyone has trouble finding ways to use their God-given gifts wisely. As well as living well.

Pace.

February 9th, 2012

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I've been away for a long time. I can't say why, journal, just one thing after another cropping up. No, I haven't stopped caring, it was nothing like that. No, no..shhh..I would never willingly get rid of you, it's just that I let too many other things get in the way. Little everyday things. Bad moods, depression, work, the odd video game. Oh, now I've done it. I'm sorry. I'm sorry. I *do* still love you. I swear to you, Ravehearst meant nothing to me. Nothing! Oh..don't cry. Please. I'm sure we can work it out. We can make it work. Maybe a media counsellor? There, there. Blow your nose.

They say that diabetics do great for the first year, and then after that stop doing what the doctor tells them to do. That thought gives me sick chills, since it sounds so much like something I would do. I've prayed over and over again, that I would find a store of determination and commitment but part of me asks "If you've never had it for anything else, what makes you think you'll find it for this?"

I've turned into the very person I most ardently wished I never would.
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