A little too much reality

19 March 2016

I’ve debated whether to post this, but authentic and cathartic won out over squeamish. If you’ve come here looking for something uplifting, you may want to move on. Try another post or check out a baking blog – people do some amazing stuff with flour, milk, butter and sugar. Don’t say I didn’t warn you.

My body and I are still working out our arrangements and mostly this negotiation is about me compromising and learning and then compromising some more. Last Friday morning, I woke to the smell of poo – a bowel accident. My carer was in early to get me up and out for work, so she came in and cleaned me up, but then I had a bladder accident while trying to catheterise myself. This is how I pee nowadays – inserting a tube and draining my bladder once every four to six hours. Most of the time, it works a treat. Once in a while it doesn’t. So I did my best with the equipment, underlays, towels and called the carer back in with my breakfast. I sat there alone, smelling of filth, eating my meusli and wishing this wasn’t so. I can be miserable. I can feel isolated. I can feel lonely.

With breakfast finished, I transferred to a special chair that has a hole so I can use the toilet and have a shower. I sat there in the bathroom thinking about whether the lower half of my body would cooperate for the rest of the day. I have no way of knowing, and this kind of accident can set my confidence back. No matter how much I reassure myself that this has never happened to me in public, that I certainly seem to be empty now, that it is unlikely … I choose to stay home. And that decision by itself undoes my confidence a little bit more. I don’t feel brave or strong or courageous. I don’t feel independent.

I stayed in bed most of the day sleeping and reading and then Saturday morning woke with a cracker of a headache. I don’t often have tears from pain – not for months – but Saturday I did. I got up to use the toilet, but skipped the shower and went back to bed until mid-afternoon.

This kind of routine happens to me about every 4 – 6 weeks. Lower half gives in, top half follows and all I can do is tread water and hope that rest is enough. So what does it mean for me? It saps my confidence in the present and in the future. It makes me wonder about recovering parts of my life like travel and it makes me wonder about dreams Steve and I had together for living rural. I find myself making little deals with myself about where I will be in 6 months time or 12 months time in an effort to perk myself up, but I have no authority to make those deals. I can guarantee nothing. I can hope. I can work to get stronger. I can let people in so I don’t feel so isolated. What I can’t do is believe beyond all doubt that I will be better off in 6 months.

My recurring question to myself is ‘why on earth would I write this down and make it public?’ and my responses are many and varied. I started this because I need the catharsis of writing it down. I also started this because I want my friends and family to be able to understand what my life is like now. You may not want to know this much, but what I’d like you to understand is that the physical suffering (as icky as it is) is only a grain-sized piece of the loaf. The bulk of it is about what the physical does to the rest of me – how it pushes me to think about who I am and what I’m capable of and to think about what parts of me I have to abandon or what parts of me I can modify (with or without technology).

Strip away the physical manifestation of the accident, and you will find that in this wilderness of the aftermath, I am no different to anyone else who has been through a life changing event. We all struggle. We all feel isolated. We all wrestle with our dual identities of ‘the before’ and ‘the after’. Oddly, the fact that suffering connects us all is a comfort to me. I do not wish for it, not for myself or for anyone, but my word I am grateful for the feeling of communion that it brings.