Flashback: What’s important

Originally posted 30 April, 2014

This is a bit of an update on the broken brain, of which there has not been an update for a while.

In short, it’s still broken, it isn’t getting better, it’s arguably getting worse – although my ability to handle it is getting better so my quality of life remains stable, however there are some stark realities looming. It’s time to decide what’s important.

What do I mean by that?

Well, for a large part throughout all this nonsense I’ve put off a number of things ‘until I get better’. I guess you could say I’ve accepted completely now that’s not happening. I started adjusting to that some time ago, but any tiny glimmer of hope of returning to the ball busting, government shaping, agenda setting, 20 hour a day workaholic me has now been completely extinguished.

It’s quite a process one goes through. For me it was on two levels – because I have fought not only with the concept of being sick at all, which is just not in my nature, and then beyond sick accepting the chronically ill/disabled label… but also with the diagnosis. For a long time I rejected this word ‘migraines’ a symptom, not a diagnosis.

And now that I have accepted it as a diagnosis, and come to learn a bit more about hemiplegic migraine (BTW, the best summary I’ve found closest to the kinds of crap I go through is here on Web MD, with the caveat that I have one of these things every week, check everything on the list except the coma and they last 4 to 6 days not an hour) I’m getting to be ok with it, but I’ve noticed that many friends and family are still rejecting the diagnosis.

Guys, it’s been 20 months. It is what is.

And it’s not going away.

So I can’t indefinitely shelve great parts of my life waiting for the magical day that will never come – I have to get on with it. But I have to get on with it within the new constraints I now have.

Some things that are important to me are clear:

• Finishing my masters and doing my PhD (although my PhD topic is a bit of a shifting feast…).
• Moving out of this apartment and replacing my bed – that’s been on the ‘when I get better’ list. I’m thinking it should be on the important list – I just need to find a way to afford it.
• Finding a way to continue to be an active part of my community and give back as I have always done in the past – which will be trickier now, but is kind of a defining characteristic of me.
• Sort out the finances once and for all.

Some things are less clear or are a bit of a two-step process – eg:

• Make a list of all the half-finished things that need completing and complete them or discard those that aren’t worth completing rather than having half done things around the house.
  • sewing projects
  • writing projects
  • books to be read
• Refining and or broadening the friends and support people in my life to genuine people I can count on and I know I can be an equally genuine friend in return

There are some personal things I need to do too, like lose another 15 kilos and commit myself to some religious stuff that I haven’t been taking seriously enough like praying every day and studying more (particularly my Hebrew which sucks).

And I look at all that and go oy, I’m so tired. I’m so sick. Can’t I just go to sleep?

Then somewhere deep inside this little growl says I’m sick and tired of being sick and tired. I can’t go on not living.

It’s important to live, and I’m going to push through and do what’s important, because one of these days one of these migraines is going to turn out the damn lights.

It’ll be a stroke, or an aneurysm, or a coma, or I’ll just be disoriented and walk in front of a damn bus, but it will happen… and in the meantime,  I need to make damn sure I live.

That’s what’s important.