Ability…Disability

Just look how far you’ve come…

I have come a long, long way.  I remember… being in hospital, being hoisted by the staff from chair to commode to bed.  Because otherwise I couldn’t get out of bed. The material of the sling harsh against my bare legs, bandaged thickly up to my knees, oedematous with hypoalbuminaemia.  It was probably easier to list which of my blood results was normal than abnormal, and my physio consisted of learning to sit up on the edge of the bed and feel my feet on the floor.  Or rather, feel the feeling of not feeling my feet on the floor.  I was slid back into position with slide sheets – a heavy, back-injuring task otherwise – but I couldn’t just ‘wriggle up the bed’.  And to stay with ‘couldn’ts’ for the moment, I could hardly eat anything, especially breakfast, I couldn’t go to the toilet without a bedpan, I could barely roll over to have the bedpan pushed under me, I couldn’t feel anything below my knees, I couldn’t even wear knickers because I couldn’t put them on.  I couldn’t produce my own red blood cells – the kidneys produce a substance called erythropoetin which stimulates the production of red blood cells, and mine had given up on that job too.  I couldn’t sit with my legs down, because I would faint, as my calf pumps weren’t pumping blood back to my head again.  They couldn’t get blood from anywhere apart from my tunnelled line… but always thought they’d have a try or 20 first.  I couldn’t ever imagine walking around, being independent in any way in a home of my own.

So I admit, as I have to, every time I try to talk about it, that I’ve come a long way.  I really have, and I need it held up to me every now and again to see that, a year ago, I was still in intensive care, though conscious, still anuric, and they’d taken the catheter out because it had become, quite honestly, pointless, and my greatest daily achievements were washing my face, and feeding myself a bit.

But I am still disabled, by deformity, pain, sensory loss, and fatigue.  And I am facing, lately, how much of normal life I can’t manage and how this might be as good as I can get. Not being able to stand for very long is probably more disabling than not being able to walk.  Because, sat down, you can’t reach like everyone else.  To pour things, move things, pass things, assess patients, see what you’re looking at.  No one is on your level, so you end up with this really uncomfortable looking-up-all-the-time feeling.  You’re separate and different.  And so everything has adjusted, to be done sitting, and leaving something in another room becomes a disaster, and so I

Not being able to walk isn’t great, and it didn’t take nearly tripping right over in front of the whole congregation last Sunday to prove that to me – few people can (or will) slow down to walk with you and it’s just not very nice looking at someone who walks awkwardly.  To anyone who has stayed with me for any distance, I’ve usually long-started apologising. which is something between a verbal tic and a craving for reassurance.

And usually “Just look how far you’ve come” comes from someone able to fetch their own shoes off the shoe rack in the morning and doesn’t have to balance every toilet visit against how much pain they’ll have to endure to get there.  Now, I know that not receiving it very well is a sign of something not right in me, because acceptance and gratitude flow from my heart most days without real effort on my part, just the Holy Spirit working within me.  But I do rather think it’s normal to have these times of pain and hurting and frustration at how things are and attempts to cajole me back to grateful acceptance seem intolerable because I feel like no-one really gets how bad and hard and limited things are.  But I can’t say so because it was my final drink that led to this and so I should be in sobriety always feeling gratitude that things weren’t worse.

God the Father can see how hurt and confused and torn I am, God the Son was and is there walking through every step of the pain, and God the Holy Spirit is within me turning me back to God and bringing my broken incoherence into those everlasting arms, comforting, restoring, offering hope again.

How far I’ve come, indeed, to find some stillness and seek God and find that every painful step, in Him, is victory.

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