Living in the Moment

It is not long till midnight. I am typing in the dark, the deep dark outside a chink in the curtain, the screen illuminating enough for me to see the papers on the grotty desk in front of me, the outline of that cool porcelain sculpture I did quite a few years ago now, the still-unfired one, which makes me happy when I look at it and reminds me that I really need to go and buy another bag of clay and start doing something more now I have some extra bouts of energy in which to do so.

Oh, man, I love that sentence.

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There is something to be said, I suppose, for health issues that force you to see how you're always walking on the edge of where the ocean meets the land just like you're walking on a wire in a circus (thank you, Adam Duritz). That line that is invisible but weaves its way through every single day. For a long time it's been a particularly drab and shabby line, like it's made out of old wool that's got balls on it like an old jumper that's been around too long, and it would lead from the bed to the couch and to the kitchen and the bathroom and often back to the couch.  Other times, like recently, it's been a line that's opened up forests on one side that I can trip off into.  Nothing major or extraordinary for anyone but me. Going to the supermarket and going for a walk in one day.

Other days I walk along that thread and fall into the sea.  Sometimes it's a bit heartbreaking. I never know when I've overdone it.  I'm asked again to give up what I've been given.  Which is the whole of life but with so many couch-filled days in recent years I have a tanty and lose perspective when I fall back into the fog again.  Even if I know that these days it's not going to be a life sentence, that I will climb back out at some point.

On Sunday things were good enough that I went with my mum to see a local Aussie muso, Billy Miller, play live at the Caravan Club. We stood for about three hours. That's nothing to people who do that every day but for me it was a really big deal. There was no way I would have been able to replicate it the next day.  My feet were so fucking sore.

The recplication the next day is the biggest test of CFS. The point isn't so much whether you see me today, walking in Belgrave, coming from the doctor's, into the Book Barn to buy pens, to the library to drop off a book and pick up a new one, to the post office. Doing chores. Flittering.  I would have seen quite chipper to you, I'm sure. But you see the adrenalised version, not the ATP-deprived one the next day who spends more time on the couch.

Still, I've had lucky days recently where I've done something like that and had No Payback The Next Day.  That feels miraculous but really it's just functioning mitochondria.

It's not what happened on Monday though. The day after Sunday's three-hour-standfest the world had that greyness to it unrelated to the sky.  As did Tuesday.  Feeling the anxiety running through my body, different from a mind-manufactured sort.  A buzzing kind that at the same time puts a sense of doomish urgency into everything.  Why are you sitting on this couch?  You need to be not sitting on this couch, or else if you just sit here like this that will be a terribly wrong thing to do and something bad will happen.

This kind of anxious body-fuelled thinking is problematic at any time, and I can generally take steps to ease off its push.  But Tuesday it was difficult because the next day was the funeral of my ex-father-in-law, which I very much wanted to attend. We still kept in touch from time to time. The last time we spoke was via email a few weeks before.  We had great conversations when he lived in the granny flat and Mark and I lived in the house.  He was a gentle man, a kind one too, and I wished to go and pay my respects not only to those who are living, but to him.

I don't believe that we are gone from the earth when we are gone from our bodies.  In our age of one-size-fits-all knowledge, the sort that is peer reviewed, double-blind, placebo controlled, many have little time for the perceptions that come from the subjective space.  That sort of knowledge is good but it brings with it hubris if it's the only kind you ascribe to.  It upsets me, really, this disrespect for our subjective life.  It's my life in here.  It's just as real as the life that is out there.  It can't be branded, it can't be monetised, it can't be shared, it can't have its privacy taken away from it, and I won't allow its dignity to be annulled by those who claim the experience in here is inconsequential just because they cannot measure it with a measuring device.

My ex-father-in-law is gone, but I don't think or feel that he is gone. Even anxious, fatigued, inflamed, the strange toxicity that comes when these fatigue situations happen, as if something in my body is struggling to work and instead is spinning its wheels, splattering genetically dysfunctional mud all over me.  I wanted to be there.  Even though I began worrying about what other people would think.  Paranoid things.  Like, would my ex's sister glare at me at the funeral and refuse to say hello?  Would they all think I was a freak, in my childless, cloistered life?  Would I drive off the road halfway there and cause a multi-car pile-up because I was spacey?  Would people believe me, if I didn't go, that I wasn't pikeing out because funerals are difficult but because I actually didn't physically believe I could get there?

7am is not so much of an issue for some people. For me it's been one for more decades than I care to count. Perhaps this was one harbinger of the CFS that would come in my late 20's, the endocrinal dysfunction that made getting up such a holy horror. 7am for me feels maybe like what 3am feels for some other people if they've got drunk the night before. I dunno. Maybe. How can we compare our own internal experiences to each other?

What happens when you know you have to get up at 7am and you're worried how you'll feel? You wake up at 5.30 and don't go back to sleep.  And so I finally conceded that this wasn't going to happen for me.  That to drive when I felt like that was an irresponsibility.  I would have had to leave home by 8am, drive for two hours in peak-hour traffic, and then turn around and drive back again a few hours later.

And so I just had to be there in spirit instead.  I guess if I'd died and some people couldn't make it to my funeral but were willing themselves there in spirit, that would be fine with me.   Maybe I'd see their colours anyway, flowing out like ribbon, connected to everybody and everything wherever they happened to be.  Time and space not always so constraining.  Do we sense people after they have gone? I feel like I had some kind of communion with Mike in the days after I learned he died. (How lovely of Mark to let me know. He didn't need to). How can we tease out the strands of what we wish to be true about life continuing after life, what we may be inventing, or what we may be perceiving on a plane that's not visible to us, not parked at any airport, not existing at all according to many and yet which many others claim to swim in their whole lives?

These kinds of experiences are between you and yourself.  They are the last bastions of privacy in an internet age :)  Nothing to be proven.  Nothing able to be proven, just felt, or sensed, and wondered at.  A space, like the negative space between two objects that you are taught to see when you are drawing.  Once you see it, you can't not.  You draw better when you draw the shape of the space in-between.  That nifty little technique brings all of the world into the fore.  All the empty spaces fill.