life

Shoe

When I was diagnosed with Parkinson’s back in 2007, I did what everybody does. I bought the Micheal J Fox autobiography. The thing I have always carried with me since then is the story he tells of his wife reminding him that there was no point in being cautious in his career choices because there was no ‘shoe to drop’. Basically, bad things happen and they happen to you sometimes, not just other people. So get on with LIFE.


Scroll forward to today and the global wake up call that is Covid19. What does it mean for humanity? Will we realise it is a chance to redirect ourselves? It’s very very hard to change your life priorities and focus. It’s very hard to start to distinguish between received habits and what we really need and want to be doing. I have seen so many declarations about getting back to core values. They are straws in the wind. Light and disposable. They do however, show us trends.

So I am thinking at the moment. Just thinking really. Trying not to scoot into a complicated action plan that involves a complete home organisation regime, shiny sinks and homemade dishcloths. Plenty of time for dishcloths later. Now is the time to really contemplate the enormity of the current position and the advent of the New Normal.

And counterintuitively, this is a time where I find myself grateful for the Parkinson’s diagnosis all those years ago. I have had my ‘shoe drop’ epiphany already. I have changed my life as a result. It’s all here in the blog. But it is no time for an update. Normal 2.0…. a

Joy?

How are you doing? This world is a little strange these days and I am still trying to work out which way is up. But then i guess there’s plenty of time to work it out. The basic rule is to watch the bubbles. They always rise to the surface. So that’s my plan such as it is. Take stock, find what gives me joy, focus on that, repeat for my loved ones. Easy….right????

So, i wrote that paragraph yesterday morning. So far so peachy. But life isn’t like instagram folks. Sorry. I have fissures of failure and crevices of crises running through me. Yesterday some of them opened a little more. Like cracks on my hands from all that washing. And,sigh, washing up.

I was going to go on and be perky by suggesting i start a joy list but today i will not be so presumptuous. Today i will lie here in bed as my fingers react to the Parkinson’s drugs and slowly come to life, allowing me to type this post. I will listen to the boys being instructed in how to make me toast and jam for my Mother’s Day breakfast. And i will be happy for that. And that’s it. No grandiose perfect lifestyle statements today. No too high standards. Just small steps for today. And that’s the hardest thing for me. Reality hasn’t always served me well. Sitting with it a while is today’s challenge.

Steps

So, I am now seven weeks post op and the cast is finally off…it came off just over a week ago and it has been a mixed blessing really. It is way more comfortable to sleep at night now…I just lose my eyes and off I drift. This is luxury in the extreme and I hope I never forget that. But in the day it is still very painful. I have done some snooping and it’s quite normal for swelling etc to be there for up to 6m after the op so I am settling in for a marathon rather than a sprint.

What am I focussing On? Well, this experience has taught me a lot of lessons…and I can summarize them as follows. I will actively appreciate and care for:

  • My friends and family
  • The level of support I have had has been stunning. My loved ones have scooped me up and carried me, sometimes literally, over the last few weeks. I am taking some of them out this evening to try to say thankyou but it will never be commensurate with what I have received from them. Friends are your chosen family, and mine have gone beyond even that in some cases. I am so so lucky.
  • My health
  • Unexpected? Well, my health is what I would politely term as ‘buggered’ what with this foot, the Parkinsons and other lovelies I have yet to discuss with y’all. Don’t worry, I will, but not now. What I mean is I will not ever ever ever take any movement, strength or ability I currently have for granted again. I completely shut down a number of times over the past weeks and it was SCARY. The gratefulness when I felt the energy surging through my body when the painkillers worked or the Parkinsons meds kicked in is almost overwhelming. I pledged to maintain and then improve my health levels. I intend to keep that promise to myself and my loved ones.

  • My independence

  • Well, I had a glimpse of the future, depending on others and the NHS. I didn’t like it. One bit. I will fight and fight hard for independence as long as I can. I am feeling militant.
  • My mental strength

    • I have always known I am stubborn. I have always known that I have been blessed with intelligence too. I had to draw upon these resources big time. When your body is shutting down and you don’t know why it is very easy to panic, I know I did a number of times, but it is also possible to grit your mental teeth and ride the storm. It takes practice, which unfortunately, I had plenty of opportunities for, but it is doable. I meditated myself silly but hey, it worked. I logically reasoned out my predicaments to myself (very frustrating to those who have different problem so,ca g approaches I admit) so that I could face them with reduced fear. I learnt how ideal With bad news, how I react In a crisis, what it is like to draw on others’ strength and trust them.

    And so I sit here and think about the future. I have to plan to achieve and maintain these priorities. And I have to understand myself so as to succeed. Next time we will go into that particular briar patch….

    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.

    Timing

    This poem is about how things can twist and change so easily and wondering what would happen if we could ‘backdate’ an encounter

    Sometimes when I am sitting

    Drinking coffee

    Dreaming of you

    I imagine what it would be like

    If we could turn back the clocks

    To when we were not pitted and scarred

    By the tiny cuts and pricks of disappointment and lost hope

    When our eyes shone bright

    And we saw light and laughter as our due

    not as a bonus

    A special offer

    But on tap. Limitless

    I like to think that if we’d met in those early times

    I would have recognised your worth

    Your goodness and honesty

    Pushing you forward

    Shouting “me! Me!”

    As i lazily fished.

    Or did we need the lows to signpost this high?

    Did sadness and pain provide strange relief?

    Perhaps

    But now is now

    And quite how

    We got here is not key

    What really counts

    What lights my heart

    Is loving you as you love

    Me

    Rhyme time

    April again….Napowrimo!

    This one is about time and it’s value

    Foundations

    Every waking moment

    is different and unique

    It will never come back and we can never peek

    Backwards

    and relive our time

    It runs quicksilver gone

    But always leaves it’s legacy

    It’s echo and it’s tone.

    We may lose every minute yes

    But each supports the next

    So shadows do not darken

    no

    They add depth and context.

    My responsibility

    Is not to ignore life.

    Is not to place priority

    On chores that eat my time.

    It is to teach my boys to fly

    and be young men with grace.

    And watch them as they soar away

    To take their rightful place.

    Revamp

    It's October, the air is crispier and so is my life. Stitch Towers is under new management (mine) and life is both challenging and stimulating. I am middle aged, I admit it, but I have never had to fend for myself until now. It's not a barrel of laughs but I'm not drowning quite yet. I am unhealthily interested in household organisation tho. I admit.

    This whole experience is making me realise that despite the plethora of domestic bliss/homemaking blogs, books and advice, what goes on behind closed doors will remain a mystery until we choose to disclose. And most of us don't choose. So, the stories I have been hearing recently from friends who have trusted me will in the main remind hidden. And that means that the perpetrators of domestic unhappiness will continue unhindered and will never truly understand the impact of their behaviour. I come from a quite well healed area where middle-class guardian readers like to drink their Pinot Grigio wine sitting in their beautiful gardens. But that image is just that, an image. Such unhappiness and frustration can lie underneath it all.

    I am choosing to walk away from unhappiness. I hope this blog will become happier and more frequent as a result. I have missed you guys.

    Lucky number

    So, as I said last time, I’ve started a new arts space here in stitchopolis. It’s my new baby and I’m loving it. I’ve come to realize That the genesis of this venture is a massive step for me. For Once instead of saying ‘one day I will do that’ I’ve just got up and done it. It had made me so much more Confident in other areas of My Life and has left me way more appreciative of my friends and network. 

    Yesterday I went to a street party being held round the corner from the unit. I knew so many people, all for different reasons- it was lovely. And me and my business were right there in the middle of it. Great. 

    I also met someone who was struggling with life and just needed to offload and breathe again. I am still stressing on a daily basis but omg life is so much better than this time last year even. 

    So I guess this post is to mark my recognition that I’ve come a LONG way in the lifetime of this blog (7years!!) and that means j can continue to go even further….cool, an adventure!! 

    Now

    I have a confession to make, I have another love in my life. I have been working on another venture and this weekend it took flight. I am now the founder of an arts space here in Stitchopolis. Can you believe it??  Check it out here. 

    Hope you like!