Saturday, February 13, 2010

If only someone would tell me...

Visited the rheumatologist today, who I haven't seen for a couple of years. My illness, as he confirmed again today, really has no 'home specialist' as it's such a rare and multi-disciplinary thing. But he's a really great guy, smart, caring, and a straight talker. So I said to him that the thing that feels the most 'missing' in my life is a prognosis. He just looked at me sort of funny. Paused. Said, "I don't think anyone can really give you one...." Which was pretty much exactly what I expected.

You see, I knew that already, that there aren't even stats from case studies to get a feel from, because I'm in a rare predicament. Here are the two things about this that are just sort of insane:

Firstly, there's a part of me that would rather be in an inoperable-lung-cancer-type situation and have someone confidently assert that there is only a very tiny and remote possibility of me surviving another 6 or 12 months.

Secondly, that I still want someone else to take responsibility for trying to control the timing and knowledge of my death. I think it must be a vestigial childlike "Muuuuumm! It hurts!! Make it better!" sort of thing. Or maybe, I just want something apart from uncertainty that I can surrender to. Like the power of a name, a box to fit into (visual pun!), a data set to be a part of.

All of which would be illusory anyway, I know.

One of the really odd things about being on a journey like mine right now, where I'm spending a lot of time and consciousness on matters of spirit and growth, whilst doing the facing death thing, is that you end up resisting letting go of painful stuff like this need for someone else to take some of the heat responsibility-wise. Yes, it is painful, because no-one can actually do it anyway, so it's just unrequitable desire. And yet, it's so very normal to cry out and ask that someone help you with this burden. So I'm resisting a loss of the normal state of carrying this wound. In our society, the wish to avoid certain responsibilities is so normal that it acts as some of our most potent social glue.

It's like an original sin thing, an old or even ancient abandonment number, where we suddenly looked back at our separation from our parent/Divinity or whatever for the first time and realised our terrible aloneness. A breast too far. Help!

And then we come up against the opposite munber on the way. Ok, I think, let's get into taking responsibility for myself, I can do this......and you go too far, and lose some of the stuff that makes you know how delightfully human life is here on Earth - the need for others.

Somewhere, sometimes, the balance is found. Still, I can't help thinking it would be great if someone could just tell me exactly where that is.

On another note entirely, things are looking a bit flat around here, so let's liven it up a bit. I have yet to load up all my pics on to this computer, but here's one I took recently. It is something I see every single morning of my life.

This is Cisco.  He is allegedly a long-haired chihuahua.  He does so love his humans.  So is this devotion?  Or just neurotic neediness?  Does it matter?  Cute, ain't he.

Until next time.

Oh, just in case - I may not get to post again for a bit, as I'm off for a spell in respite care from Tuesday for about 5 days, so will most likely be offline - I don't think they have net connectivity there and I don't have either a so-called smart phone or that wireless broadband that runs on stuff called Expensive.  Looking forward to a good break for Meeta and me. 


  1. Wow, so well spoken. You really make me think about many things of life. My daughter has been really sick and we have been in and out of hospitals since she was born. She over came death 3 times in her short life now 20 months, when doctors did not expect. Keep the faith. God Bless You!

  2. Thanks Lisa. Sounds like young Victoria Faith has learned a whole lot about life already, eh? I hope the journey's rich for you both.