Controversial: I’m not a Warrior! Or an inspiration. Or brave.

A profile pic of me, a white middle-aged wheelchair user. Mouth wide open and a green Mohican. In one hand is a lit sparkler. In the other a half drunk glass of champagne. I’m wearing a nonsense load of silly clothes.
My New Year’s Evolutions
1 January 2023

We, the Multiple Sclerosis, disabled and wider D&I community do love complex words and explanations. ‘Intersectionality’. ‘Diversity, Equity and Inclusion’. ‘Disease Modifying Therapy’. ‘Toxic Positivity’.

I’m gonna tackle the last one today. There’s a phrase used by lots of MSers (that’s people with Multiple Sclerosis). ‘MS Warrior’. I’m absolutely fine about people identifying with that, but I just don’t see myself there.

I’ve done everything right in handling my MS. Straight onto a treatment as soon as it was offered. Exercise. Good sleep(ish!). Staying active professionally and socially. Decent diet with the odd naughty cake. Vats of water. Possibly too much Tequila. 😬

And yet I’m pretty ill with my MS. I have daily carers. I struggle to make a coffee. Socks on and off? Half an hour without help. Am I failing? In my ‘battle’? Nah, I’m embracing my disability and enjoying life. I’m generally super positive and honest when I’m not.

 

In his lounge, Mark is sitting awkwardly on his wheelchair in his PJ’s. He needs to work on his core stability. Behind him is Buki, his favourite carer.

A total warrior, yesterday, ready for action.

 

And talking of ‘battling’, that’s another bugbear. A lovely local mummy I’ve known for over 40 years recently ‘lost her battle’ with cancer. She went quickly, surrounded by her family. I’m not sure what her son and daughter think about the phrase, but I don’t see that she lost a thing. She lived a long, active life until just a few weeks before her passing. She was wonderful and she will be much missed. I’m crying as I write this and kinda dreading the funeral.

In short, I’m not angry about my lot. I have lived a blessed life. I have a lovely family and friends. I plan to tootle on for years. But I’m not brave. I’m not an inspiration. Daily life is very, very tough. There’s no shame in that last bit. And I realise there are people feeling far, far shittier about their lot than me.

’Battling’ and ‘Warrior’ are two pain points for me, but I found these helpful lingo suggestions here: https://www.verywellmind.com/what-is-toxic-positivity-5093958

 

Toxic Statements

  • Just stay positive!
  • Good vibes only!
  • It could be worse.
  • Things happen for a reason.
  • Failure isn’t an option.
  • Happiness is a choice.

Non-Toxic Alternatives

  • I’m listening.
  • I’m here no matter what.
  • That must be really hard.
  • Sometimes bad things happen. How can I help?
  • Failure is sometimes part of life.
  • Your feelings are valid.

I’ve said it. Apologies to all the battling warriors out there…

 

1 Comment

  1. Jane H says:

    I’m with you on this Mark, I find the MS Warrior tag a little icky and unhelpful too, and I don’t have the energy for a battle, just want to crack on with life the best I can. I enjoy your posts, thanks for writing.

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