Into the great wide open

It was my daughter's last week at primary school this week.

It's been very emotional - not least because she's left in such peculiar times.

Covid has meant no goodbye disco, leavers show or summer fair.

It has also stopped the little rituals of writing on each others' shirts, group photos* and hugs in the playground.

She's absolutely loved her experience at primary and we've had a fair few tears.

As parents we're quite wobbly too and utterly bewildered by how quickly the time has gone and how much she has grown.

Neither of us are really ready for her to move out of the safety and familiarity of primary and into the vast unknown world of secondary.

But life is about change and movement. The chances of standing still are remote - and it's something we all need to learn how to deal with.

Logically as adults we know this, but it doesn't make it any easier (or any less tearful) when primary school comes to an end.

We've got the summer hols to enjoy now and to prepare for the next step and all the differences it will bring.

In a world that has become increasingly unrecognisable, an ability to change and adapt is going to be more important than ever.

:: Into the great wide open by Tom Petty and The Heartbreakers

*Although we did manage some class bubble shots outside the school gates. All in their Leavers 2020 hoodies. *Blubs unbecomingly*

The times they are a changin'

One of the many, many things Coronavirus has wrought upon us is a soundbitey phrase which is being repeated ad infinitum by politicians, the press and, increasingly, the public.

The "new normal" is now being bandied around like some sort of breakthrough wisdom, spoken with a near reverence for the way we're all going to have to radically adjust and adapt.

And yes, we will, there is no doubt. But for members of the chronically ill community, the concept of new normals is anything but new. We experience them with unwelcome regularity.

If I may take my own 16 years as an example:

• new normal: loss of confidence. Struggling with cognitive function, logical thinking and the easy retrieval of names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. 

• new normal: loss of opportunity. I still work, but it’s not at a high level. It's hard to see how working part-time between relapses and increasing disability will lead to any huge career responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

• new normal: loss of choice. Ok, to be fair, it's not completely lost, but it is constrained. And it relates to the smaller things like a trip out (what's the accessibility like, where are the toilets, the resting places, how are the queues, what's the noise level like, how about the lighting) to much larger life decisions.

• new normal: loss of vision. Three bouts of optic neuritis have left me with damaged sight. There are many, many frightening impacts of MS, for me vision issues are very near the top.

• new normal: loss of control. MS hands make for poor tools. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, my phone asterisks out the naughty words.

My personal tally of new normals have gradually increased over the years as my MS has progressed. And with each there has to be a grieving process to allow us to adapt and survive change. 

Our society's new normals will require the same process - for some it will be manageable, for others it will be very, very tough. 

But if those of us who are chronically ill have anything to share, it is knowledge, advice and experience. Because we have become the reluctant experts in this sort of normality and for us, it's just not new.

:: The times they are a changin' by Bob Dylan