Ep.22: Mind v Body
Cooking dinner one evening a few week’s after surgery and suddenly my brain goes quiet. I tune in to my senses to try and work out what’s just happened, what’s different, and I realise that for the first time I can’t feel my back. Quite suddenly, like as switch being turned off, my brain decides to accept the shape and feel of what’s happened to my body. It’s so odd and comforting that I stand by the dining table, resting my fingers gently on the wood top and just enjoying the sensation of no sensation. I hardly dare breathe in case it disappears. I have to search around for the discomfort, its still there when I tune in but I have to find it, like a taste or smell you have to reach for.
Since my wounds started the job of healing the discomfort in my body has intensified and magnified to form a constant background noise to my every waking moment. I’m not in pain as such, just permanently uncomfortable, and no matter what I do it won’t shift or ease but now, in those brief few glorious moments standing by the table as I make dinner, I realise that my brain can do some of the job of easing my body. And I start to wonder how much of my recovery will be about physical mending and how much is about my brain learning to accept and then quieten.
Over the next few days the sense that my back is all wrong returns and once again I find myself resisting the physical shift that surgery has wrought. I wonder whether everyone who has had this surgery feels the same or are these the challenges of someone who is particularly physical in their connections to the world. Would this all feel less difficult if I were someone who didn’t seek out physical activity the whole time? When I look at the world I yearn to be out moving in it. When I look at the hills above the house I want to climb them, when we sit by the loch in the evening I can’t help but want to walk into it, to feel it all around me, to watch my hands through the peaty brown water, to swim. I don’t know how to be in the world without being physical and now, following surgery, whatever I do that’s physical is drowned out by the noise of my post-surgery body.
I try and pick apart what’s eating me up. Its not like I can’t do things, I’m not in pain, but there’s a sense that whenever I try to do even small amounts I meet resistance, real or imagined. Every contact and exchange seems to revolve around whether or not I’m resting. ‘I hope you’re not doing too much’ is the constant nag and it makes me hiss with annoyance. But maybe the Greek chorus to my life has a point because every time I try to do anything beyond the most minimal of activities my body revolts, I have a screaming reminder of the cancer and the past few hellish weeks and I hate it. How do I find my peace with this? How do I continue to be physical when I feel so compromised?
But it’s not just my brain’s stubborn refusal to accept my gnarly, ugly shape, there’s a further problem with my brain getting in the way of my recovery. One Thursday, tired of listening to my body’s constant whine about the pressure and twisting in my back, I decide to set up my road bike on a stationary turbo. It means I can cycle indoors and ease myself into fitness again. At the risk of me constantly yearning to be out on the road we set it up in a room with a stunning view down the length of the loch. It’s the Friday evening before I decide to brave climbing into the saddle and turn the pedals. It feels fine and I feel an exciting flicker of possibility, the possibility of getting ‘me’ back, in spite of the mess of my body and all that’s happened. So I gently pedal for 15 minutes then climb off and feel pleased. I photo message David who’s off fishing by the loch, 'ta daaaaa, I’m working on us getting Penelope Joyfulness back', he replies with a thumbs up.
The next day that flicker of possibility is still burning in me so, while David works on the garden, I dig out my mountain bike and pump the tyres up. I decide I will cycle to the end of the beach at the head of the loch then home again, all of about 2 miles. And I do it. I feel nervous, anxious and shaky but I get on my bike and I bump my way down our track to the end of the loch then turn round and climb back up to the house.
I remember talking to my good friend Dan before my operation and I told him I thought I’d be fine with the recovery bit, that I understood pain and how to push through it, that I had that kind of strength. And I do have that kind of strength. A perpetual mantra that has accompanied me this past few weeks has been everyone telling me how strong I am. That seems to be how people see me, strong, and people define strength as the ability to push yourself. That same strength saw me take up cycling in the wake of surgery on my back 10 years ago. I decided on cycling because it didn’t seem to hurt my spine but it would allow me to push myself and I do need something to push me. So I took up cycling and to begin with I cycled up to the top of a local hill and then turned round and cycled home again but before long I was setting my sights on doing a 65 mile sportive. Then that 65 miles turned into my joining a cycling club and wanting to cycle 100 miles, which I did, meeting David in the process so my new passion for pushing myself on the bike became a shared obsession. And in the course of cycling all those miles my brain learnt to ignore my legs and ignore discomfort. Cycling 100 miles is not particularly comfortable, not for me anyway, but you learn to just tell your legs to shut up and get on with it. You learn a certain brand of resilience and fortitude, a stubbornness, something people call ‘strength’.
And so I thought that coming out of surgery I’d be able to grin and bear any pain. That I’d just tell my body to shut up and get on with it, as I always have. So when I climb onto my mountain bike and bump my way down a rutted, stony track, I don’t think anything of it. And when I come to climb back up the hill, instead of getting off the bike and walking I just tell my legs to get on with it. I make it to the top elated and giddy with what I’ve just done and yes, it didn’t feel entirely great on my back, but I did it!
For the next two days I feel terrible. Truly terrible. I can’t get comfortable however I lie. My back feels what I can only describe as ‘outraged’ at my behaviour. For the first time in weeks I have to reach for painkillers and slowly, quietly, frustratingly a horrible realisation dawns on me that I’m just not ready. No matter how much I want to be the old me, I’m not ready, far from it, the only bit of the old me that remains is that idiotic, stubborn core, which doesn’t know how and when to stop pushing.
When I meet with Karen, the breast care nurse, I share my heartbreak. I tell her I don’t know how to find a new Everest, that I don’t know how to work out what the limits are, what I can and can’t do. I feel like I don’t have an off switch and don’t know how to ‘listen’ to my body. I feel so frustrated that even when I do what I think of as baby steps, they’re too big and I’m still too broken. And the feeling of being trapped in this new and ugly frame is overwhelming. For the first time in all the week’s I’ve seen Karen, I cry. And the sheer magnitude of my surgery slowly starts to sink in and I’m gutted about it all.
I’ve slowly come to the realisation that I’m just not getting better. I’m not healing and if I’m to have any kind of chance of getting back on track with my recovery I need a radical re-think.