it didn’t work. Short and simple

April 16, 2014 at 12:33 AM (Uncategorized)

I tried to go home to live in the outside world again. It didn’t work. Getting inti the why or how. is disgusting, so I won’t. I’m now one of those locked away people again. I have so many physical issues that are separate from each other and equally difficult to manage then unless I can get a help pretty much around the clock, going home will be impossible for me. Medicaid will take my funds to assist in my care and my autonomy will be gone. I’m just listing all this because it’s hard.

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Thinking of my parents today

April 23, 2014 at 12:36 PM (Uncategorized)

Of my father who has passed away and my mom who is here but who is just overwhelmed my so much

I keep going over what if scenarios. If my father were here, if mom felt better, would I be in this box today with another solution besides a skilled nursing facility? My inner two year old thinks they could fix things, swoop in and save the day .

In reality my stepfather is much better at such things than my father would have been.  And no solution is presented itself. In a month or two I will lose my home the accessible apartment that fit me so well.

There is no fix at least not right now

I’ve put in an application for what’s called an assisted living waiver. It’s different from the medicaid waiver I am living under as an independent person. They will still suck up my money and leave essentially nothing. But, I’ll have a miniature apartment, my own kitchen, etc and a great deal more freedom of movement than I
have in my present place.

Hopefully I will be physically ready to leave months from now when that assisted living waiver comes with a spot for me.

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I am the same person on the inside

April 22, 2014 at 10:09 AM (Uncategorized)

Do you know how I know? Because I have another example from earlier in my life. It sometime in the mid 90′s maybe 1995 or so. My cousin Tiffany who I loved like a sister, had been going through dialysis for a long time and it really eroded her body and her spirit. She said often that she wanted to die.

Send the second miracle I ever saw happened. She was in church when she got the call that a kidney was available and motor get back to University Hospitals. I waited some with the family near the end of their wait for her to come out of recovery.

I was stunned, shocked in a good way when she spoke. She was still blind that couldn’t change. But that voice … It was an echo of herself, the voice remembered. It was so much clearer and definite then the voice she’d had fighting the dialysis prior to the transplant, and she was only moments out of surgery. Astonishing.

So two or three days later I’m rambling through the halls of the hospital on my crutches going to see her, to visit. And suddenly, I heard her voice and got shifted back in time in my head and in my head it was 1977 again, and we were up in a marvelous houselong attic discussing boys and school and clothes and who got kissed first. ( she did. I was peeved and aiming to even that score, which I had, by July of that year.)

I walked into her room and cried out, ” when the hell is this, 1977 or something? ”  and she laughed. And I laughed and her sisters laughed and her husband laughed. There was so much giddy, silly joy in the room that day just  telling silly stories over and over. Just to do it. Just to hear that voice. And that laugh was just the same as it had been years ago.  She was the same person inside, then, as she had always been.

Things happened later, it didn’t last, she went downhill. But that doesn’t change the fact the for a good long while after that transplant  whether she stayed at home or was in a skilled nursing facility, she was the same inside. 

So there you have it. Proof. I don’t have to subjectively persuade you from the inside of my head that I am the same side . Then you’d choose to believe it or not colored by how reliable you think my version of myself is.You don’t have to do that. You can just look at the story and realize that it can be done and that my version of myself inside my head, at least for now, has some credibility.

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A late Easter thing

April 21, 2014 at 6:59 AM (Uncategorized)

Faith is what it is, the leap into non reason . Are we wrong to make that jump? Probably. Science ,which I love, leaves very little room for this, aside from a fairly rigorously done study on effects of prayer on patients.

Another reason to put that belief system down is  the horrid  abuses that can occur in most belief systems. Sometimes it seems that religion can be used almost as often for evil is it can be for good.

There was a time when I could be counted on to be a fairly relaxed agnostic. I was okay with  the existence of a God but the rest of it I didn’t want anything to do with.

And that and atheism, are completely valid places to be for anyone else besides me who decides to want to be there. And I was there for a long time.

Even 20 years ago when I saw someone pull off the suffering servant thing right before my eyes. That was not enough to keep me in a pew. Playing out as  human experience the idea that you are sworn to God not just as a believer but as a leader and  it didn’t affect your destiny at all. A long painful death by inches is what you had in the cards and that is what you got.

The very human fallout from that is part of what made me flee organized religion.

( but somebody else pulled off that suffering servant thing too. Oh wait. Who was that? I know, Jesus.)

I can’t dismiss faith anymore for various reasons. One of them perhaps the most important and persistent :
( and lets not count for 2 times in my life when I was made medically crazy by drugs) , I’ve had flashes of something else or someplace else that isn’t here.  it isn’t the observable quantifiable fact checked present. I’ve had these flashes when young and a lesser amount of time as I’ve grown older.

Atheists can certainly laugh this off as a side effect of incipient mental health issues or my unadjusted cerebral palsy brain. I cannot.

And secondly: the fact that I am now hanging on to religion  with both hands, grasping at faith as if it were the only tool the toolbox is unsurprising given that I’m in a nursing home waiting for my body to decide if it’s ever really  going to let me out again.   The subtext being that I would never have gone back into the house of God much less embraced faith  sincerely unless I had been ill or impaired in some way.
Um, no. Not quite.It’s important to know that I chose to return to faith  while I was still working still holding down a job like you able bodied people.  So the argument that I only chose it because of my illnesses doesn’t quite hold water.

The biggest difficulty and embracing it hasn’t been my love of reason and facts because I don’t see any problem with God coexisting with those things other people do I don’t.

(Aside: God made physics, chemistry, biology, medicine , archaeology science of all sorts morons, so quit hating on science and go home and go to bed .

  All of their findings including findings that deny him.  are things he built!  Life is complicated, science haters. Embrace the complexity, children. Take my word. God will love you better for it. The easiest part about returning was a simple need for community , some experience I could have with others and share with others that would bolster me up that makes me feel a little safer in the world as I go about my daily affairs.

The second I’ve talked about before: two friends who happened to be Catholic and who showed me nothing but mercy all the way along as I made mistakes.

That, and the pastoral side of John Paul the second, and the courage of how he lived out his own death. Some of his encyclicals make me twitchy. However his life did not.

(Aside Two. I find Pope Francis present pretty darn awesome, even as I find his past troubling.)

The hardest thing was changing a long standing rule that I have in my life .  I make myself second to nobody, not for any reason. I don’t place myself behind them or beneath then for any reason. Next to them yes, to help some if I can.
So putting myself in a place where I acknowledge a higher authority and subject myself to it was difficult at work and nearly impossible any other place.

What anybody knows, believer or not, is  if you embrace Christianity you have to assume that not only is there a God, but that he expects some fealty,  a little bit of allegiance.
So now, yes there is one being I will reverence.  Only one. That was the beginning of it.

Part of the reason I can do it has nothing to do with a squishy Easter morning happiness at the resurrection: the open door, the meeting on the road, the understanding yes one’s teacher one’s mentor, one’s Messiah has crossed  over and you can too. It’s not that at all. That’s a little too The Learning Channel as constituted today, for me to hang my hat on as the reason I came back to Christianity in any form.

It is much more Gethsemene than glory that pulled me back in. The image of a very human man, pleading to be spared suffering.  He went through death not completely certain that the Father’s promise would play out. He submitted to it said:  God’s will be done, but he wasn’t sure. 

It’s that very uncertainty , that brought me in, sat me down and started me on a journey back to faith. I don’t need to be certain. I just need to be there , all in and in it for the long haul.

Aside Three. this Android app sucks because I took the trouble to place paragraphs and colons in all these paragraphs and Android won’t do it Pfui.)

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Old rules.

April 19, 2014 at 7:28 PM (Uncategorized)

Mostly I’m not fond of the old rules. A lot of them limit, oppress, or otherwise harm people trying to get along in life.
      There is one of the old rules I like and I actually enjoy following. That rule:  when someone is gracious enough to invite you into their home you try very hard to be courteous and kind and express your gratitude to your host or hostess. If you don’t you are out of line .
I would expect such a person to be kindly asked to leave or thrown out depending on the nature of the violation  of  said old rule.  I like that old rule  because it implies a reciprocity and an appreciation of community and fellowship.

A very different old rule was applied to me today and I didn’t like it much.

I distrust the other old rules. Today I was rather astonished and angry to have one of them played on me.

     “You should be grateful,” the family member said, “…grateful that there are people there to take care of you. Make sure to keep your place and mind your manners.”

At first I thought the wording and the intent was a joke so I asked about that but no they were completely serious.

I say thank you to my caregivers nearly everytime I see them. I try to be very kind, positive and  entertaining. There are times when I get sad when they’re there, and then they have to be a little understanding but so far that’s worked out.

But to be told to keep my place as if, because of my illness I have become some sort of *servant* or* lackey*,  or another similar word I won’t use.  That ain’t me
*ever.* Keep my* place!* *mind my manners?*   Growl. Spit. Fume. 

Okay, where the fuck am I really, some Victorian novel?

I think I ‘m devalued enough without those words. I live in a box of a room. I will soon have a neighbor returning home from a  hospital stay that will share this box with me.

I know that quadriplegics and paraplegics often have to come to terms with the kind of caregiving I have to receive now the personal care that is so basic. But I’m new at it and not adjusting very well to it.

So, having someone choose to speak of one of those old rules about how  persons with disabilities should behave, as if it were  good advice… No.

I have to try hard not to fall into that lesser space. I sure as sh!t don’t need a push.

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In my shoes

April 18, 2014 at 10:30 AM (Uncategorized)

So I am inside. maybe forever. I always talked a good talk for individual people that I know who also have a disability worked for their autonomy, their rights, their lives. I can do it on the internet now but not on the outside anymore. So I’m asking anyone who sees this particularly any other people with disabilities to walk in my shoes and do what I did preferably with a dose of compassion and patience as long as a good sprinkling of an Irish temper walk in my shoes people, walk in my shoes.

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