Sometimes keeping up with these blogs is hard. Not in an unpleasant way mind you. I enjoy writing and it helps me to get my thoughts out; even if occasionally it feels like I’ve ambushed myself, with feelings I didn’t recognise until they were on the page in front of me. The moments in which I come up with initial ideas for a new blog are often far removed, by days or even weeks, from when I sit down and actually write something. I use notes that I make in those moments - on my phone or scraps of paper – but I often have to cast myself back to that moment. Hindsight is often a wonderful thing, but I’ve always been adamant I want this blog to be real and honest and so I try my best to cast away memory bias. This is important for you to know, I think anyway, because sometimes by the time I get to writing, something has happened that changes things, and it could sound like I’m ungrateful. Especially at the moment, because there have been 3 really positive changes lately; the bungalow, my return to work and last but never least… I stood for the FIRST time using my legs to at least do some of the work – if you haven’t seen the video, do check it out. It is more progress than I would have thought possible in just 16hr of therapy. I felt my legs engage, as I deliberately rocked forward to put weight through my legs. I felt my butt muscles clench to correct my posture. I felt everything and it was incredible. However, that is not where this blog starts.
Lately, I’ve been feeling low. I’m used to it, 1and that ‘sunken-inside-myself’ numbness seems to come and go as it pleases. No rhyme. No reason. I can have the greatest day, and the next I’m just as likely to get a streak of good days as I am to be confronted with the sucking void. Obviously there are also times where I can pin point the reason; and I marvel at how even little things can sometimes send me skipping down a road of self-doubt, and even, (I hate to say it), self-pity. I guess the things that have triggered such a response haven’t really been small, (the anniversary, the insurance company messing me about, finding out my left hip is pretty much f**ked), and it’s hard to keep positive all the time anyway, even when you have no obvious problems and haven’t been through such trials. Still I wind up feeling disappointed in myself when I can’t shake the fog, and be semi-productive.
Yet, there are days that I don’t want to face it.
‘It’ being life itself.
‘It’ being my injury.
‘It’ being a completely changed life.
In bed, and especially in sleep, I can pretend for a little while that it didn’t happen. At the time it feels good. I could spend hours just led on my side reading, drinking coffee, having a fag, cuddling and stroking the cat, (not a euphemism), I feel normal – even if normal is boring, it’s safe. Thing is later on I’ll think of all the things I could have done, all that potential in a day, gone the way of all flesh. ‘Do not waste time, for time is wasting you’. I paraphrase, and I can’t remember the source of it, but that’s a quote I often turn to. Essentially I could be dead already, and I could still die tomorrow, so surely I should be using the time I have to do something. On the bad days I do still get out of that bed – granted it might be 4 oclock – but I drag myself up, usually with multiple attempts. I guess though that in itself is something. It’s a middle finger to the demons that try to weigh me down, and make it feel like I’m extracting my limbs from a tar pit; if I get up even for a few hours, they lose. I mean that’s an achievement of sorts. To keep getting up and facing my problems is something; some people might even say brave? Yet often I go to war with myself…
I’m allowed a break. You’re just making excuses. I’m allowed time to process. You’ve had a f**king year and a bit, get over yourself. I can’t be expected to be strong every day. How else will you get through this? But it’s changed so much, it’s taken so much from me… Stop focusing on what you can’t do. Well that’s easier said than f**king done.
One of the things that contributed to this funk was the anniversary of the crash. You’d think the milestone would make me grateful for all I have achieved – and it did, and I’m proud of myself I promise – but it was also a stark reminder of what I lost, and the uncertainty of what I will get back. Yes it’s been a year, but that’s not long in the grand scheme, and trust me, it’s definitely not enough time to wrap your brain around something that changes every aspect of day to day life. The actually anniversary was brilliant. I decided I would use the year marker to celebrate that I’m still here with people I love. I went for a lovely meal… and then perhaps had too much wine…which resulted in thinking f**k it, lets go ‘out, out’! Where do I go? My old haunt of course, and so commenced an evening of being carried up and down stairs for drunken cigarettes, (between lots of house measures), because yes ladies and gents my old haunt is in a basement – I mean, we know I don’t do things by halves. Thank you to those who made it possible. Still it’s difficult sometimes to be thankful for the things I manage to do, because there is so so much more I want to do.
My trainer has picked up on my tendency to undersell my achievements. I never thought of myself as cynical. To quote a line from the film Dead Poets Society, ‘Not a cynic, a realist’. That’s me. I’m not negative, I’m just practical, (and afraid of disappointment). Thing is I always saw myself as more of a Mr Keating, (Robin Williams’ character), and not one of the stuck up conformist faculty. I am a dreamer. I do believe in the power of positive mental attitude, and a firm belief in yourself. There is this little voice inside. A voice of hope. Maybe you will walk again, maybe I will find a way to check, [insert crazy thing here], off my bucket list.
Even if you can’t see me celebrating it doesn’t mean I’m not. I do feel proud of what I’ve achieved. After I stood in therapy I was squealing with joy on the inside. One of my medical colleagues made me realise that, when he said, (after watching me cycle for the first time), ‘You shouldn’t be able to do that!’ He’s right to be surprised, because we didn’t really expect this, but I’ve worked hard for it. I haven’t let my injury define me and I’ve kept pushing. Maybe that’s why you don’t see me fist bumping and high-fiving, because I just always want more. If I shouldn’t be able to do that, what else can I try? I set myself goals, and when I hit them there is such a sense of overwhelming, ‘I did this!’. I prove to myself time and again that I am strong, and I celebrate with a coy smile, (and maybe treat myself to some banana chips – I’m obsessed), but then I’m always thinking what’s next. It doesn’t mean I give up on that accomplishment and leave it where it is, it just means while I’m improving on that thing, I’m focusing on how it will get me to the next step, the next milestone. However the other reason you don’t see me jumping up and down, (other than the fact I obviously can’t do that….yet), is because I am cautious with my expectations. I don’t want to get ahead of myself, because I want to continue to feel proud when I do something I wasn’t sure I’d ever do again, instead of disappointed when I can’t do x. y and z (yet). I hope that makes sense.
Nobody would question that this has changed my life irrevocably. While I hold out hope that, I may one day take a few steps with crutches, I am aware that walking ‘normally’ again... regaining that level of function, is slim to none. I accept that; but letting go of what I’ve lost is the hardest step. I’ve always referred to my feelings of ‘losing’ my legs, as similar to the steps of grieving, but rather than it being a stepwise progression, it feels like a pendulum. For a while now I have periods of feeling like I’m on the cusp of acceptance, but I can feel the momentum shift, threatening to pull me back – that moment of weightlessness and inevitability – and there it is, I’m back to anger or denial or bargaining or just pure suffocating depression. Sometimes I even find myself right back in the territory of shock; of just how the fuck did I get here?!?!
Those days are the same days I struggle to make it out of bed. When my head is full of buzzing questions, like flies around a carcass. As a doctor I have heard so many stories of tragic injury. It’s sad but true, there are so many ways to break a human being; both mentally and physically. I was thinking the other day of some of the neurology cases that I’ve seen or discussed. The nature of the beast means the ones you remember are usually the extreme, the interesting, and those that personally affect you. One such lady I remember was in a state doctors term PVS or permanent vegetative state. Long story short she’d fallen into a diabetic coma after vomiting. While unconscious she had breathed it in, choking and causing a respiratory arrest, which if not remedied will always result in cardiac arrest. Her husband found her and started CPR, and then, with hospital care her body lived… but her brain didn’t. She got to a point where her breathing apparatus and other ‘life support’ was turned off, and yet her body still lived. Her ‘primitive’ brain kept her heart beating, kept her breathing on her own, if you stuck her with a needle her spinal reflexes would automatically make her withdraw, and she could make involuntary noise – but nothing she did was her. Everything that made her who she was had died that day – memories, language, moral code, recognition of loved one, decision making, all these centres, her entire brain was gone – and yet a husk remained. I started to think what was worse; a functioning brain in a body that won’t or can’t do what you wish of it? Or a body that has all the potential of ‘normal’ movement, but not being able to utilise that potential due to brain injury? In a similar vain sometimes I wonder if its better to have never known something, due to being born without that ability – or to have experienced that something and then have it taken away.
These are all impossible questions, but they take over sometimes. No one has definitive answers, we don’t know for sure if thought is possible without a fully functional brain, and no one can tell us which is worse in the life-long Vs acquired scenario. Eventually though, I come out from under all these messy thoughts, I break the surface tension, I breathe and I realise that I am lucky. I know my personal answers to those questions. I am lucky to still have what I have. I am lucky to have had the opportunities to do awesome things, that have given me a wealth of memories. I am lucky that I still have enough function to return to my career. I am lucky I have the inner drive, and outside support system to make sure I still do awesome stuff; bring on Amsterdam, Comicon, BEYONCE! – girl you know I will twerk in my chair! To know that, if a way can be found to camp in the Moroccan desert or see Macchu Picchu, I will find it. Then finally, that I am lucky, I am privileged, to still be here to try.
So although recently I’ve struggled, and my outlook has wavered in unpredictability, I am trying to celebrate every day. Not just every millstone or goal, but every second that I get to be alive and be who I am. I won’t always manage that. I’m not superhuman. I am just as flawed as anyone, but I am here. There are indeed so many ways to break a human, and I got broken; but there is a Japanese art form called kintsukuroi where broken pottery is repaired with gold or silver, with the understanding that it is now more beautiful for being broken, and maybe that’s me. Maybe I can be better than I was ever going to be because of this. At least that’s what I’m going to try and believe.
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