Wednesday, May 23, 2018

Things I Learned on Holiday and since

In a desperate attempt to pretend that all is well in my life, and that I had more or less recovered from the stroke I had in December, I took myself off to Fibre Arts NZ in Whanganui for a week, and from there, for a road trip to Dunedin and back. I learned a lot of hard truths.

  • I still have a lot of recovery to go.
  • I will probably never recover fully, because, you know, dead brain cells are, you know, dead.
  • I can drive for 4.5 hours if I'm fresh, but 2 hours can be too much if I'm not.
  • I need to practise things consistently if I am to be able to do them again: when trying to hand-sew, my fingers did not have sufficient strength to hold the needle tight enough to pull it through more than 3 layers of fabric until the third day - before that I had to use pliers for every such stitch.
  • I still need a break from anything every half hour: driving, stitching, reading, talking.
  • I can multi-task again, but only when I am not stressed, tired, or doing something new. For example, today after being stressed and extremely anxious about something, I struggled to understand Mac's words while we had lunch at a cafe with noise around.
  • Trying to relate to more than 2 or 3 people at once has become almost impossible.
  • The fine motor skills of my right hand rapidly deteriorate after about half an hour of use.
  • I still stutter and lose words when I am stressed or tired.
  • I am a very long way from achieving the state aimed for in my choice of 'fearlessness' for my WOTY (word of the year): in fact, fear is constant and lives very close to the surface. I am constantly aware of how that stroke came out of the blue, when I was feeling the best I had for years. Aware that it could happen again any time. Or something else. Fear not of death, but of incapacitation, mental or physical. Fear of something happening to me, or to those I love. I don't dwell on it, and use mindfulness to ease the anxiety, but awareness of the reality of the possibilities is ever present, even in my sleep, popping up in dreams in weird ways.
On the other hand, I also learned a lot of good truths. 
  • I have recovered a lot.
  • I can drive to the other end of New Zealand and back - as long as I take it a bit slower than I used to.
  • I get more tired, more quickly than pre-stroke, but I no longer get that fall-down-can't-do-anything fatigue that I got for the first 4 months post stroke.
  • When I practice, I get better.
  • My brain has discovered / developed new pathways to my right leg, so it no longer randomly flicks sideways (which it did for the first month), nor even feels like it will (which it did for the next 3.5 months). Which makes driving much more comfortable and less stressful. This resumption of normal sensation happened the day before I got home. 
  • Whales and dolphins are still the most awesome fucking creatures in the world.
  • Gaia (the planet earth) is amazingly, excitingly, uncaringly wonderful and powerful.
  • People matter more than anything else to me.
  • Art is art even when it isn't great art or saleable art - it doesn't matter, just do it!
  • Most people are kind.
  • Most people respond well to being treated kindly.
  • Practice makes better, which is much better than perfect as it leaves room for more growth.
  • I can do a whole heap of totally fucking awesome shit if I want to and I persevere.
  • I want to.
  • I will persevere. 

Sunday, April 15, 2018

Grey Day

It's a grey day
an almost winter day
wind and rain
but insufficient
for awe or excitement
 It's a grey day
there's some colour
in sodden autumn flowers
candlestick and sweet bird but
It's a grey day
thoughts of deaths
lie sodden in my heart

It's a grey day
the cat is unimpressed

Still it's a grey day.......

Saturday, March 10, 2018

A Day of Reflection

Today was a day of reflection. A day of sadness. A day of memories. A day of past and present.

Since having a stroke in mid-December, I have done a lot of reflecting about life and death, and my thoughts were brought sharply into focus today, at a friend's memorial gathering. He became ill around the same time as me, but while I am recovering well, he did not. No rhyme or reason to it.

Having children changes your life in so many ways - mostly good. Being a homeschooling parent is wonderful in so many ways. But there's one way in which it is.... weird. It affected my friendships. There were people who I didn't get to be friends with because our kids, who were always with us, didn't get on. There were people who I had to be 'friends' with who really weren't my sort of people, but our kids were friends. Weirdly, one of those 'not my sort' remains a close friend long after our kids grew up and left home, while other friendships with people I had more in common with, did not survive the end of our children's friendship. Still another developed after our kids were grown.

Today I reminisced with one of those latter, and she expressed regret that we had not been able to remain friends, given that we have so much in common. Maybe we will resume communication, maybe not. But as we remembered our mutual friend, we both regretted not spending more time with him, and other friends. 

I had already arrived at a gut understanding of the need to live in the present: today it became urgent reality.

I need to remember the past, but let it go.

I need to hope and plan for the future, but not become attached to my hopes and plans..

Most of all, I need to live as fully as possible in the present and not put anything off for 'someday'.

Wednesday, February 14, 2018


It's cooler this morning
and grey.
The deep blue-black
mountain sulks.

But from the east
a shard of gold
paints a slice
of brightest green
across a hill
in the west.

Motorcycling Vision

Rose-tinted spectacles are one thing:
looking at the world through
dark prescription lenses
and a perspex motorcycle visor
is quite another.

Wherever the summer sun
falls on leaves and
the breeze moves them,
they shine with iridescent
paua greens blues purples pinks,
and even the tops
of black plastic water tanks
and the backs of Friesian cows
shine like polished pounamu

Saturday, January 13, 2018

One Month On

Apparently, if you have a stroke, the most likely time for you to have another is in the month following. I've made it through that month alive. I am fighting the 'I'm tired', and the fear of what might happen every moment - but I am also very aware that 'there is only now'. I might have another stroke and die before I finish writing this or I might live for another 18 years without having another, before dying of something totally unrelated, like my father did. 

I've discovered how amazing ours bodies are, and especially the brain. There is so much that the brain does without us noticing. On Thursday I visited our local physiotherapist for some help with exercises to rehabilitate my weak and lacking in proper control arm and leg. On Friday I did some (just some) of the exercises and wiped myself out. Such simple exercises but they overwhelmed me. The arm exercises were meant to be done with 1kg dumbbells but I only had 1.5kg one: not a good idea. I nearly passed out. On Saturday we went to Otorohanga to Greg and Maggie's place to help re-clad their garage: well, Mac helped and I stayed inside and rested. Except it wasn't restful. I thought sitting and writing up a bunch of stuff that has been neglected would be restful but also good exercise as writing is one of the things that I've been having to re-learn. Seems that learning is hard work too, and uses up a lot of energy. Suddenly I was feeling faint and dizzy and then, fearing another stroke, moved in to an anxiety attack. Turns out all that sitting around writing had been such hard work my blood sugar was too low! A large glass of cold water, a couple of crackers and cheese, and I was out to it for an hour, sleeping the sleep of the innocent. Who would have thought it?

As well as my WOTY (word of the year), 'fearlessness', I have adopted a mantra: plan as if I'll live forever, but live each day as if it's my last. But living is hard work! I am trying to find small pleasures. I made a little no-sew, no-glue book and am writing in it the things I want to do 'fearlessly', but it's more a matter of facing up to, and conquering, fears. Just making the book was scary as I wasn't sure I still had the cognitive and fine motor skills to do it - in some ways it's easier to just not try things and just pretend that I'm fine, that I'm just choosing not to do things. But that doesn't really work, does it? Anyway, I made the book, with a few folds not folded as well as they could be, but it works. As I said, I'm writing in things I want to do, then adding dated tags of things I actually DO. Small things so far, but it's a way of reminding myself that I am making progress, to try to ward off too many poor-me times.

Part of my 'plan as if you'll live forever' policy means I am putting as much effort as I can manage into looking after my health (which means learning a whole new heap of stuff about bodies and the brains that run them,) learning more interesting stuff (like how to make a no-sew, no-glue book, politics, new thinking in feminism....,) and, something I've never done before, starting a bucket list, even though many things on it are pretty small.

Monday, January 8, 2018

When You Sit Alone

When you sit alone
facing death, or worse,
you are blessed
if you have people
to call on
to sit with you
and wait.
You are blessed
if you have people
who love you.
But ultimately,
you sit alone.

When you sit alone
facing death, or worse,
you are blessed,
by those who
love you,
but more so by
feeling love
and giving love,
to others and yourself
Because ultimately,
you sit alone.