My eyes sometimes have a heavy ache from crying, and truthfully there are moments I feel like they've finished, like my tear quota for the day is full, but often this is followed by moments where it's like a sneak attack; when sudden random thoughts occur. Will I ever shake my tail feather with the passion I used to? Stand long enough to push my little treasures on swings? Do the Inca trail, walk the Great Wall, dance at holi festival in India, visit the trampoline caves in west wales, quad bike through Icelandic desert to find the northern lights, camel ride to the camp site in the Sahara???
I had planned such an adventurous life. However, a lot of the time I feel worse for my fiancé than I do for me. I haven't told you guys about the worst days yet, right at the beginning, at least not in any detail. For example, the moment I took off my engagement ring and told him I didn't want this life for him, that I wouldn't ask him to look after me. The moment I felt lost and broken. He pushed me back. He kissed me. He told me he'd made his choice. He's still beside me everyday. He keeps me hopeful. He tells me we'll adapt the plan. And I can only hope he means it.
So I'm not saying I can't. I won't ever say I can't. Because he tells me I can do this. My parents and brother have told me I can do this. You all tell me I can do this. And you're with me. And so every day I tell myself, 'I can bloody well do this!’ I will remain the same person even if I can't walk - God knows I never liked running anyway.
But then we still don't know… That's what hits me. I don't know. Just when I think I'm okay, the demons say, 'but you might not get any of it back at all' I'm scared. I'm scared that is also a possibility. I will work hard and keep hopeful, but surely there's only so much that can help.
I promised myself when I started this blog that I'd be honest. Even if I was having a shit day. So here's my honesty. I am heart broken. I'm allowed to be. My life has changed in the turn of a faux leather wheel. I knew I'd have days like this. I admitted I would. Yet I still accept what has happened. And I will make the best of this because what the hell else can I do? Moping won't restore my legs. Complaining won't bring the feeling back. Wishes and ‘what ifs’ won't turn back time. I made my choice to move forward. And I will. I don't want to be bitter, glitter. Right foot. Left foot. I can do this. But I also get to grieve for my loss. For now I have lost my legs. And I don't know if they'll come back. They are like a missing person. A loved one that vanished in a heart beat, and you fear something truly horrible has happened, but theirs no body, no finality to the tragedy, so you can't even grieve properly, because what if? And I'm the party that is still hoping and praying my efforts to find my lost ability will pay off - only time will tell.
But you see the main reason I feel so bad right now is simple. At least in the rehab stage I'll be able to do something, to make those many hopeful, even desperate efforts. But in this stage - this led at 30 degrees 24hrs after 24hours stage - I can literally do sweet FA for my recovery apart from lay at 30 degrees and let myself heal. I'm at the mercy of my own body's capacity to recharge and recover. And it SUCKS. And what the hell kind of angle is 30 anyway? Typing on my laptop is frustrating cause I can't see the keys. Sometimes it takes me 4 attempts to get a word right. A simple word like 'treat'. I can't do the colouring books that are designed to chill me out. Oh and don't even get me started on eating and drinking - although sometimes I laugh at myself and that helps. I read. That is my main pleasure, but with the concussion, the morphine, the gabapentin, the diazepam, I can't even do that for long before I'm re-reading sentences and my eyelids are sliding down my eyeballs, threatening to close.
Then there's the frustration and the odd sensations. Looking at your legs and willing them to work but getting no where. Some days I want to just scream at the inanimate hunks of flesh, and muscle, and bone; feeling genuine anger towards my own body. 'Just bend you bastard of a knee!' There's often moments when I feel my legs have taken a frogs leg position of their own accord but when I look I find them as straight as Barbie doll legs - though without the shinny unattainable beauty standard skin. Gorilla style is more like it; one of the best things about sitting up will be washing and shaving my whole body myself - my apologies for the imagery. They're currently wrapped in inflatable plastic booties, swaddled in compression stockings and calf pumps, propped up with blankets to keep them straight; yet as soon as I relax back, and forget that image my own eyes have just seen… there it is again - uncomfortable frogs-leg position, and no strength nor ability, no matter how hard I try, to push my heals down and straighten into my best impression of ballets 1st position. I wouldn't wish this on anyone.
Then there's the phantom sensations and the pains. I've spoken about this before; how they are both dead and hypersensitive - well now this is evolving. It's a good sign really, or I'm choosing to see it as one. New sensations are the potential to achieve normal sensation. But the sensations right now are evil. The no-mans land where my normal sensation wanders into the bizarre is a flaming circle of skin around the tops of my thighs and through my groins. It feels like it's been scrapped away cell by cell by sand, so that the skin isn't penetrated just excoriated. If I lie still it's like a cooling salve tingles over it…but the second the sheets russle, a cool soapy flannel glides over with care, or at the most extreme during physio (when my limbs finally stretch and move but at someone else's command); these rings around the tops of my thighs feel like fresh superficial burns. Scabbed over and tight, then cracking as they open a fresh with movement. But you know what? Sadistically I like the physio because it reminds me what my legs are capable of. It makes them feel less dead. I hold on the notion that any sensation is a step forward. I also have constantly spreading pins and needles (firstly only my right foot, this week both feet and to the knees) though this is far easier to deal with. Indeed it is more uplifting than annoying; at least it is something.
I do also realise how lucky I am. Mum went and rescued a few books that I was reading and other sentimental items from my car, and she made it very clear from the state of it I'm lucky to be here. I do appreciate things could have ended much worse. Primarily, with a funeral march or tetraplegia. And being honest I am in awe of people who mentally withstand total paralysis, because I'm not so sure I would have bounced back from that. Yeah, it could have been much much worse. I am lucky to be here. And everyday I feel I'm lucky, but just sometimes I don't feel lucky all day.
That's okay though. And it will be okay.
Lots of people keep telling me I'm brave. That they’re proud or amazed I can be so positive. I think by being honest with you, you might just see I'm not always brave, I'm not always positive. I wouldn't
expect myself to be. And you don't expect that either. As strong as I am, as much as I've been through, the number of times I've bounced back, it's always been with help and support.
My point? Yes I'm strong. But I don't believe I would be strong enough without all of you. With the people that have walked through several hells with me, and now are still prepared to go through the flames once more. Sometimes that means bearing the brunt of my frustration, but sometimes it's just asking, 'how’re you holding up?’ and meaning it. We all have a super power that we severely underestimate. We all can chose to be kind and show compassion. We can all make someone smile or even make a strangers day. Aspire to be an everyday hero.
So that's the honest truth. This sucks. But it sucks less with you guys standing by me.
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