Hello my lovelies, thank you all for the Easter wishes and an extra hello to all the new guys here 👋🏻
A few things::
A new ‘notes’ thing available in this letter. It’s a Twitter-style thread where folks share small thoughts and ideas. Feel free to join in.
An additional letter landing in your inboxes called Domestic Bliss - domesticity through gritted teeth & a dash of Parkinson’s. Essentially it’s a mini-magazine covering everything from housework to parenting to an agony aunt column. Keep your eyes peeled on Sunday afternoon.
This tweet made me think about the challenge of living in the now and future planning.
A chronic, degenerative illness means you are stuck in a time warp. A cross between obsessing over future prognosis and a frantic living in the now.
No medical person has discussed how to plan for the degeneration of the illness I have. Now, I don’t know if that is or should be part of their remit but if not the knowledgeable professional who do we discuss the future with?
Since Parkinson’s is a slippery bugger it is especially hard to ‘plan’ anything. Certainly, on some days, I can plan with military precision and on others, the left and right shoe is too much. Our capacity fluctuates which is why supported planning would be of benefit.
But what is it we are planning for? I’m not ready for the PLAN. You know that end-of-life stuff. But there is enough in front of me that I need some plans.
Some plans are medical, some are personal and some are work orientated. Every one of us has subtly different needs and lifestyles so our plans need to be individualised. Plans need to be flexible - one year, one month or one day I might need things run in a particular way, the next year, month, day in another way. But if you have roughly planned for those fluctuations it means you aren’t expending valuable energy scrabbling to adapt.
The other bonus to planning is we can prepare ourselves emotionally. By creating an illusion of control perhaps we really have control. A plan can help us face some of those hard-to-look-at worries. As ever, shining a light on a problem can make it less terrifying. But we can’t do this alone - it needs to be a team effort; medical, carers, employers, family and friends.
Having pontificated about all the above I am also a huge advocate of fuck this shit live NOW!
My kids need me - now. My partner needs me - now. My life needs me - now.
Since my diagnosis 5 years ago my capacity to plan has faltered so living in the now is thrust upon me. I don’t really have the motivation, cognitive ability or energy resources to plan. Which again is why I need a team.
Yes, I am afraid of the future that Parkinson’s may or may not offer me, but then I’m afraid of the future that global warming or the ability to pay my electric bills present. Life is full of unknowns and potential fear but we still have to grab it by the balls and make the best of it.
Do you live in the now? Or are you a plan master? Hit reply or comment.
" fuck this shit live NOW!" Or as my fave band Wet Leg put it
I tried to meditate
But I just medicate
Pour me another drink
Don't wanna have to think
I think I lost my shit
Some kind of fucked up trip
But I kinda like it
'Cause it feels like being in love