Sitting in a Pear
Updated: Feb 1
TW: This post is about pain. If reading or hearing about pain triggers your pain, consider returning to it when you're already in pain (don't waste your pain-free moments!)
So, for me, the worst part about the way I experience Functional Neurological Disorder, is the pain. It took me a long time to accept the way my body sometimes looks and moves, the tics, the aphasia or the funky dystonia as part of who Emi is now... but it has been a lot harder coming to terms with the pain.
It makes sense that pain would be harder to accept, "pain is bad" is such a fundamental belief. I mean, if you think about it that one belief has founded pretty much all our ethical principles, systems of government, values ... everything. When it comes down to it, the only way we're able to determine what's right and wrong comes from our own experience of pain being something we don't want and so acting in a way to escape it and in a way that doesn't inflict it, either. It's lumped together with "death" as this universal bad that we must escape... but pain isn't death, pain is life! (Wow Emi, you're so deep, have you thought about doing a Ted Talk and selling tote bags on Etsy with your quotes on?)
I know it sounds like new-age-white-guy-with-dreadlocks-bullshit but it's true. Pain is trying to protect us from death. Sometimes it helps to visualize it. For example, my pain is a little purple square called Brian with glasses, curly hair and a constant expression of worry. When I accidentally graze my hand against the oven wall Brain starts pressing all the buttons in the control room and waving his flags... he's doing everything he can to get through to me with the urgent message "Move your hand away!!!" Brian is constantly on the look out for things that threaten my safety because he wants me to realize there is a problem and change my situation.
This is super helpful in situations like that, but the problem with having a condition like FND is that I can't solve it by moving my hand away or making a quick decision in the moment. Poor little Brian is pressing all the buttons, waving all the flags and working overtime to tell me that 'something isn't right', because he wants things to get better. Bless him!
So, what I do next is kind of like re-parenting or inner-child work if you've ever done that. First of all I try to calm myself down, deep breaths, relax the shoulders, lie down and stop catastrophizing. (If you experience chronic pain you might be familiar with this kind of internal dialogue... "Oh f**k! The pain is coming! This is going to be unbearable now like it always is!") I take away any judgments, thoughts or feelings about the pain so I'm just left with the pain itself. The pain isn't right or wrong, it isn't just like last time etc. And then I talk to the pain. I say (out loud)...
"Hey Brian, I hear you, I know. Thank you for trying to protect me, that's really kind. But right now this isn't a situation of immediate danger. This is my FND, and it's under control. This isn't something we have to fix or change, so you don't need to get my attention, you can just relax now."
OK so that isn't some kind of Derren Brown shit that magically gets rid of it. I don't wake up from a nightmare and start skipping round the village handing out roses. Sometimes it makes no difference at all. But every once in a while, it helps, and that's better than nothing. It's shit, it's really really shit. But with a bit of physio, a lot of hot baths and hot water bottles, a few pep talks with Brian and the strength to remember that this pain won't last forever, it becomes bearable - horrible, but bearable.
And something I like to do when I don't have the energy to talk to Brian or the brain power to re-frame the feeling... I make a big phat f**king noise!
"BLAGHAHAHAHHAAAAAR!" Like I'm trying to exorcise it out of me or something! haha! Because at least then I'm letting Brian know that I'm acknowledging him, and I feel like I can express just a little bit what I'm going through (even if just to myself). If you make repetitive low noises (like the Hindu 'om') the vibrations actually travel through your body and calm your nervous system. I kind of think of it like how my mum's voice must have sounded when she was carrying me around before I was born.
I have loads more tips but I'll end with a fun one. As a proud member of cancel culture I've decided to cancel the word "pain". In fact, this blog post is the first time I've used it in months. (I've really popped that cherry today, haven't I!). Because of it's connotations, because of it's memories and because it seems to depress the hell out of people who are not in pain, I've opted instead to start saying "pear". Instead of being in pain, I'm in a pear. A big, juicy, green pear! The bigger the pain, the fatter and sweeter and fruitier the pear!
I hope some of these tips have helped some of you, but even if they haven't... at least we're talking about it. I totally understand those of you who are reading this feeling frustrated and patronised because 'it isnt that simple', I know it's not. But give it a go anyway... what have you got to lose? Sometimes it helps just to feel like you have tools in your arsenal and you're not powerless, so let me pack your rucksacks with all the hammers and screwdrivers I can! Even if they're ridiculous foam ones! But above all else, remember, it will pass.