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Over the last few years, I’ve started hearing comments from friends, family and strangers (not necessarily directed at me) about how brave and courageous certain people are for keeping on going despite their long-term health conditions. I’ve certainly had this levelled at me when I was embarking on my journey to get HSCT (haematopoietic stem cell transplant). Particularly as I was going alone to Mexico.
When it’s been directed at me, I’ve countered it with the rhetorical question, ‘Well what else can I do?’
Or
‘Not really. It’s either that or give up and die….’
Whilst a part of me does really want people who are more able than I, to acknowledge the bravery and courage it takes every person of reduced / different ability to continue functioning reasonably well in a mostly able world, our society has also taught us to deny this acknowledgement. So I feel embarrassed when someone does actually say this, and brush it away.
But there is a truth in my words too – because what else can I do?
Moan? What will that achieve?
Deny the reality of my situation? Again, what does this achieve?
Roll over and die? Possibly…. But not yet. Life is precious and I will not let the disease destroy me until it does in fact destroy me in mind and body.
Not much point in moaning or denial for me other than to make me spiral downwards in my thinking and feelings. Not much for others either as they will only switch off after being dragged down in their mood or continuously feeling helpless themselves.
An expression of my feelings is absolutely essential – in a safe and trusted setting. But expressing them negatively into a void, again and again, without seeking help, will not get me out of the hole I have metaphorically dug for myself. Been there, worn the T-shirt.
But if I can express my feelings and then transform them into some point of action – either through my own internal resilience or through getting the help to do this, I can feel in control again, rather than out of control and a victim to the disease.
Been here too and keeping the T-shirt. This position makes me feel better once I got the hang of it. It also makes others feel better about being around me.
As to HSCT, after the event I have realised the truth in others’ words because the treatment turned out to be hardcore. It’s not an easy treatment to have, especially on your own in a foreign land. Thankfully I was looked after amazingly well by the staff of Clinica Ruiz. But there were still times when I wished I had at least one familiar face – someone who knew me – the real me, instead of just the MS patient me. someone who could comfort me when it all got too much; someone who could reassure me when I was hallucinating and didn’t know what the hell was actually going on.
So yes I survived it; yes it has benefitted me (I’ll be discussing this on the weekend at the @AIMS Summit, and I will hopefully write about it in a book next year), and yes the jury is still out as to whether it has actually halted progression. But as it is the only medical treatment that makes any sense to me and, as I was determined to do the one thing that gave me a chance of stopping the disease in its tracks, I was going to do this whether anyone came with me or not.
And I did.
And yes, it was brave of me. Yes, it was courageous of me. But I can only see that now after the event.
So I guess the question I want to level to you is this: What complimentary truth have you brushed under the carpet of late?