This Sunday morning just gone I was a picture entitled Misery. I don't think it's a state secret that I've been struggling lately. Struggling with the enormity of the situation, struggling with pain, and then there were the daily struggles I had yet to blog about. Mundane but prolific difficulties, like eating when you can't sit past 30 degrees; when everything gives you heartburn so bad because your oesophagus is slack and your stomach acid is free to surge up and wreak havoc. It makes you fear to eat. The constipation was another gastric joy of laying down and not moving. My bowel having become sluggish since the accident meant although I'd been going to the loo thus far, an X-Ray revealed a right sided faecal impaction; a solid mass of poop high up in my colon that needed to be shifted. This meant the doctors needed to increase the barrage of laxatives I'd been receiving - that I'd been crossing my fingers would have prevented this - to try and relieve the mass that could potentially obstruct my bowel and make me very ill indeed. Problem was I'd already been struggling with the laxatives. Having IBS I am prone to bloating and wind - the laxatives just made this worse. They were aiming to make my bowel essentially 'squeeze' more but this just resulted in more wind and spasms that, despite knowing they would ultimately help, still made me more fed up. I just wanted to feel well. My bowel played the stubborn card. Like it was hanging onto my shit like a hoarder; '...but what if I need it again one day?! It could come in handy!' This resulted in not just one but two weekends of what us Doctors cheerfully (and accurately) term 'the dynamite'. Well it worked... but honest to God it was the most painful shit I've ever taken.
Even with all this they were complaining I wasn't eating enough. As if I felt like that! Bloated, nauseated, heartburn, tummy cramps. I felt like screaming at them all 'you try eating led down and with all this going on!' I'm going to sound like a Moaning Myrtle now but I honestly thought 'well at least it was over', but then my bowels started working too well. There's no easy way to admit it, but at 26 I suddenly found myself not just shitting the bed, but having to rely on nursing staff to clean me up. My tummy would gurgle, a trembling shudder of wind and more than 50% of the time it would be the infamous 'day after the night before' special - the shart. A shart with what the nurses here would call a 'good result'.
All this was enough to make anyone feel low - even me with my cheery disposition - I'll admit that, but the other pitfall of bed rest is having time to stew over everything you're going through. 24 hours in pretty much the same position, in the same room, with the same fucking light panel above your head. The same routine day in day out; the monotony of my thoughts is broken only by drug rounds, a bed bath, the tea trolley and maybe visitors. I occupy myself with books, catching up on TV programmes, blogging, the fundraising effort; clearly I'm trying to have as little time with my own thoughts as possible. I guess that's pretty understandable. Who would want to sit contemplating the reality of what's happened, when that reality is a scary long road that still ends with life having been changed forever?
Lately the distractions haven't been enough and my minds a muddy swamp of questions, potentials and fears. Realities sinking in that may seem so insignificant but mean the world to me. I'm disabled now. That is a part of what I am. My favourite bookshops in Paris has no disabled access and I never explored the upstairs, or stayed as long as I wanted for fear of boring travelling companions. There is so much I hadn't done that now seems barred to me. There's times when I can't even see a future. My legs are so heavy and cumbersome I can never see a way to sit crossed legged on the floor again and get up; am I never gonna play on the floor with my kids? And wait a second, I'm very likely to have fertility problems... If I can't will they let me adopt while confined to a chair? Joseph Joubert may have been right, 'misery is almost always the result of thinking'. It's easy to indulge in that sadness; to think pointless thoughts - I just want to be normal again. I just want to wake up before this happened - but just god forbid I start asking Why?
On this particular morning I was a combination of all these frustrations. I was woken and greeted by my neuropathic pain, tummy cramps and recognising that I smelt like the (wrongful) stereo type of an 'old person'. I had soiled myself again and was led in a puddle of my own shit - they had to bin the sheet - with nothing to do but ring the bell and trust other people to make sure I was clean. I've been both ends of such a situation having worked as a nursing assistant in multiple specialties. I didn't want the pity, or the care, or the assurances it was 'okay love, don't worry about it'. It was humiliating no matter how kind or dutiful the staff were. As they rolled me around that prison cell I called my bed, I contemplated how cruel life was while I cried pathetic tears and called out in pain. I had developed a tolerance to the pain meds again. I was entirely fed up. I felt something I have not often felt in my life time; a devouring defeat and moreover, discovered in that moment I had no will to fight it - I was done playing. I was just done. I made that clear to the Doctors. I had no issues with my care, but I was just officially fed up. There had been no further progress with my neurology. The flickers of muscle movement had failed to ignite and remained as embers of hope. There was no longer a reason to keep to bed rest, especially when there is no official evidence to suggest this is the best course in lower cord injuries - in other centres I would have been in a chair weeks ago. I was frustrated, angry and bitchy. I was lucky that the lovely people visiting me that day wouldn't care if I was Satan, they'd still love me.
To cut a long story short they advocated for me and encouraged me to ask for what I wanted, for what was important to me. I wanted to go outside. It wasn't easy to arrange, but at 6 o'clock on a cloudy Sunday in April 2017 I was wheeled outside for the first time in 6 weeks. This is a rare occasion where words may prove wanting. If you haven't been through some type of confinement you will not understand the joy I felt. There is a term for it; biophillia - the human tendency to seek a connection with nature. To be in the midst of just that little bit of nature was incredibly up-lifting. To see sky, to appreciate the multiple shades of green, to feel the chill of the breeze. I was purely happy for the first time in days. I breathed that air and felt renewal of hope, revival of purpose and I cried. I cried with relief of being alive. My thoughts earlier in the day were so dark, but just those few minutes outside and I felt lighter. If you haven't been through it you won't get it and I don't expect you to, but I implore you to cherish the small, seemingly insignificant details in every day life. To embrace the miracle which is life, and take nothing for granted. I went to bed believing once more that I can beat this; or at the very least try with all I've got.
I don't know how long this buzz will last. I could wake up tomorrow and the pain beats me back down. However, I know the fight is in me, I know the hope is there, I know all I need to do is believe.
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