Knowledge 2

So it’s taken me a while (but what’s new) but here is my second instalment of my diagnosis story. First instalment can be found here.

So there I was, holding down a high powered job, crossing the globe advising multinationals at board level about their tax governance etc etc,  looking after two small boys, trying to  keep domestic arrangements (for which read tidiness, cleaning etc I wasn’t allowed access to household finances but thats another post at some point) on an even keel, be sociable with friends and family and have a decent  relationship with my husband. And deal with the head f~#k that is early onset parkinsons. And my father died.

Eventually I was given an appointment with a clinical psychologist as part of the ‘you have parkinsons’ package. She asked me what I did. As I listed all my activities she m said quietly, that’s a very full plate and you haven’t even said you are a mother.   And she was right. I was so bombed I hadn’t even considered it. Even tho my boys are my world. And then she said something that with hindsight was the beginning of the end of that life. She said, if somebody added a big pile of something new to your plate isn’t it logical that something else will have to move to accommodate it? Why do you think everything else is the same? Isn’t that the illogical part?

 

And I argued and railed against that simple question. I couldn’t see past my current persona. I could not see what had to change. Then I went and talked to OH and tentatively broached the subject of cutting my hours. At that point I was doing four days a week but four very long days, in a national role. And the fifth day I had my youngest to look after. So no rest. No down time.

 

And that that was the tipping point for me. OH works hard. Very hard. And can only do that because he got all childcare support from me. He is also a great provider. And couldn’t see past that role. I got left behind in the reflex reaction of worry and panic the suggestion of less salary induced. Looking back, we didn’t handle it well. I felt abandoned and misunderstood. This was about preserving life and quality of life, about living to the max with our boys, about loving each other and being with each the. I really did love him. But he couldn’t get past the fear of the illness, it’s label, it’s implications. He buried himself in work, took on more and more chores, resented it, stressed, got angry blah blah blah. And I felt alone, unloved, scared even. Money and stuff seemed to be more valued than experiences and emotions. We were poster children for how not to handle a serious diagnosis.

So there we were. Struggling with the diagnosis without ever saying so. It was a lesson in mis  communication.

That’s  it for this instalmet. I will do another one soon. But be warned, it’s a while before we get to a cheerful outcome.

Sugar free

We all know that sugar is the enemy…

Normally
moments of clarity
bring strength and hidden depth.

Today I’m seeing, unfortunately

The cul de sac of death.

My limbs turn to lead

I live within my head.

And it will get worse.

There is no cure,

Just this curse.

And that, is the truth.

No sugar in this diet.

Did I shock or dismay?
Do you want to turn away?

Is this what we do

With my unsweetened view?

But consider if we

Chose to focus on sweet

Sentimental but meaningless words.

We would stick in the syrup

Be gummed to the floor,

And no one would fight.

Why fight? What for?

So no. No sugar for me.

If alternatives are bitter

Inaction too sour

Then maybe just maybe

We’ll find that damn cure. 

Level

Funny times chez Stitch…shifts in circles, changes in routine, ever growing and developing children, challenges both big and small…so how do you keep an even keel? How do you make sure you are true to yourself? There’s no real answer to that I suppose but things I have learnt this week towards that goal are as follows:

  • Be consistent. If you like Marmite, don’t be swayed just because everyone else says its pants. You like Marmite, big deal!
  • Be open. Talk to new people, ask them about themselves. Make new friends. Take the focus away from the now and look to the future. All life is change after all. If it isn’t it would be sooooooo boring. 
  • Be honest. With yourself. Being timid and not facing up to the truth, however painful or unpleasant in the short term, will not give long term relief. I am not good at this, I hate conflict, but sometimes it’s better to recognise a bad situation, cauterise it and then move on. 
  • Appreciate what you have. Do you have good friends, constant spouses, loving children? Excellent! Take notice of that fact and remind yourself that they are the important ones. They matter.
  • And stop being so serious! I am serious quite a lot of the time at the moment. I need to stop. It’s more fun helping Elder make a minecraft Mayan temple than doing the dishes. No contest. No brainer. 

That’s it, pearls of wisdom duly scattered. You know I’m joking about the pearls, right? But not about the things I have learnt. Definitely not that.