The Gap In The Narrative

There’s an insightful documentary on Netflix, ‘End Game’, about end-of-life care. It’s a beautifully moving film and I highly recommend it.

One of the doctors explained that ‘suffering’ is the gap we experience between how our lives were and how they are now, and this hit a real chord with me. It’s all about acceptance, right?

Although he was talking about the End Game, it was a powerful and invigorating point.

We are diagnosed, we grieve, we accept.

We gather ourselves together and get on with life, however short it may be.

It sums up what I’ve been tussling and struggling with these last six years.


Perhaps not.

All of us who are diagnosed with an incurable and degenerative illness face loss, and it’s incremental. We may not be at death’s door, but the loss is there and potent. We may have to accept our jobs are under threat, our partners lose patience, our friends drift away.

Should we accept that this has happened and if we don’t, are we still suffering? Perhaps:

  • I could have pressed my ex-employer for more compensation, but I chose not to stoop to their level.
  • I should have been worried when the government and the media started spewing out anti-disabled/benefits propaganda?

Suffering to acceptance is a very, very difficult journey for anyone to make, far less someone with an illness such as MS.

So, say we get through all that, as I hope I have. My son is fine, my MS is governable. Right, next stop, Acceptance?

I think this is only true at a micro level, which I think an illness such as MS thrives upon, for the good. MS brings us up short. We do smell the roses. We are normally young so have the chance to change our lives.

It may not be absolute acceptance, but it’s half-way there?

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2 thoughts on “The Gap In The Narrative

  1. Teresa McTernan says:

    Hi, For me the problem with accepting MS is the goalposts keep shifting. I fought against being seen with a stick but now use the stick with no concern for how it looks to others. I fought against giving up work struggling on as if the council depended solely on me for it’s very functioning. Now I’m happy I made that decision so to a certain extent I’ve accepted aspects of MS…However I read somewhere that only 30% of people with MS experience pain (no idea where I read that), and for awhile I was happy that I was in the larger group that didn’t have pain. But now am one of the 30% so that’s hard with quite severe pains every night. I love writing (mainly for my own enjoyment) but my hands are now getting so weak…so the problem for me with accepting MS is that I don’t have a clear picture of what lies ahead. If I did I think it might be easier to accept. I guess the struggle is to accept an uncertain future.

    • stumbling in flats says:

      You’ve really hit the nail on the head there: the unpredictability of the MS progression and having to constantly reevaluate each stage. Just when you think you’ve got the hang of stuff, MS throws a blinder!

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