It’s Christmas and there’s lots of people celebrating in their own way, and whilst out shopping for my beautiful girls’ gifts I was approached by an utter stranger with the words “he will heal you when you let him into your heart”. Unlike last time, (and because it Wasn’t a child) I responded with my actual thought of “Don’t be ridiculous”. Also stop touching me. Personal space please.
I fully expected to laugh about it on the way home, but instead I packaged it away in my head. And waited until now in my safe blog space to explore it. So welcome to my 1am painsomnia party. Anyone in the house who can’t sleep despite both diazepam and oramorph shout “heughhhhhh!”….. oh. Ok. Just me then.
I know a lot of people who have enormous faith, some Christian, some Muslim, others Buddhist. They are kind, wonderful people that I am richer for having in my life. I was raised Christian, but given the freedom to make my own choices (with a healthy dollop of Catholic guilt should I choose to leave the church). But whilst the amount of water remains the same, my glass got bigger.*
My first bug bear was the idea that I got ill because of something I did. Sin makes you sick… or I did something to deserve this stupid genetic condition that wreaks havoc with my internal organs and encourages my skeleton to separate at every possible occasion. I deserve this pain because I sinned. How very Catholic. If this is the case, had I known, I would’ve enjoyed that sin a lot more.
The other suggestion I’ve had from people of faith is that God has a plan and this happened for a reason. So, this all loving father tried to kill my daughters (which were saved by science) and has had a fair few pops at me and because I’m the weeble that won’t fall down, we’re just throwing pain in my direction because there’s a reason I feel like death on a daily basis, it’s just on a need to know basis. Bollocks.
EDS has been slowly stretching me like chewing gum for a decade (and much longer when you consider childhood injuries), although this year the stretching went nuclear, but to add to that CRPS developed in my pelvis. I will not be stronger because of this, what I will be is physically addicted to opiod medication because this is levels of pain that no amount of praying is going to touch. In those wee small hours in the early days when my bones felt like they were running with acid, I prayed, I begged, I would make bargains. In the end, the being that made it stop, or at least tolerable, was a GP with a recognition that I needed something to work on my neuropathic system. If you are reading this and still think you should post a passage from a 2000 year old book to tell me why I feel pain, please study the chart below. Now live that pain daily until science rescues you.
The side effects of Neurotonin which was prescribed alongside a whole host of painkillers for the non-neuropathic pain, are similar to those following a mild stroke. The drug prevents synapses from being formed and as suc, words are temporarily lost from my vocabulary and my short term memory worsens. I quite literally did give CRPS a piece of my mind.
My faith is placed with my doctors who have dedicated their lives to solving the mystery of dysautonomia and eds. They do not declare themselves infallible or omnipotent, but so far they have been brutally honest about a lack of a cure, whilst helping to reduce pain and set me on a path where I’m strong enough to help myself plateaux rather than slide down further. I do not worship them, rather respect them and trust them quite literally with my life.
I will finish the same as I started. If you have faith, that is a wonderful thing. I commend you for holding onto that light in a world that’s pretty hideous right now. But, please don’t try to convert me. I am a humanist – I deeply believe that we should attempt to treat each other how we wish to be treated and take care of the things around us. When I die, I believe that it is the end – my body will go back to being part of the earth and I will live on genetically in my children. What matters is the here & now rather than any afterlife.
Christmas to me is a Pagan festival which celebrates the winter solstice and the idea that hard times are over half way through. Spring will soon be here and with it the warmth that will sooth my bones and food that will support my slowly failing body. Despite this, it’s also a holiday adopted by other religions to promote a sense of community, and anything that makes us look at someone and ask them if they need a hand (or leg, or shoulder) can’t be bad.
So to you, whoever you are. I hope this week brings you a small piece of love or joy in the form that you hope for. And if you possibly can, this week pay it forward – ask at a coffee shop if you can pay for the next person’s coffee, go sit with the little old lady sipping tea on her own and listen to her, see that lady in a hijab looking uncomfortable on the bus? Go sit with her and smile if she looks at you, listen to the carol singers at your door and thank them for bringing you music, however bloody awful and put of tune it was, ask the lady in the wheelchair if she needs a hand. Be nice. Human nature is not to be cruel.
*kudos to you if you got the reference