A Change is Gonna Come (But Not Yet): Why I’m Too Bloodyminded for this Shit.

I didn’t mean to leave it this long between blogs.  But illness, anxiety, mental distress and exhaustion are inconvenient like that.

I’ve written before, about inadvertently conforming to ableist norms.  It was an arresting moment when I realised how much of that I’ve done in my life, but realisation does not automatically lead to change.  In recent times, a number of people, close friends, colleagues and acquaintances have remarked on how busy I am.  And until the last month I’ve always laughed that off.  I’ve always in a way needed to be busy, but have never seen myself as any busier than anyone else.  It’s only very recently that I’ve had to consider that day-to-day tasks such as cooking, shopping and showering take more out of me physically than anyone else.  CP has been a constant companion in my life, so in this regard it has become rather like background noise, unregarded and not factored in to the equation.  I’ve only ever wanted to be seen as equal to my abled peers, but physically and mentally that presents challenges.  As noted above, keeping pace physically requires much more effort and exertion than I’d like to admit.  It’s no great fun to have to go and lie down for 20 minutes after preparing and cooking food, but that is the reality.  I don’t know if in the twittersphere people with CP qualify as ‘spoonies’ but more and more I feel that in line with the ‘spoon theory’ I’m having to ration my energies much more strictly.  Or at least try to – as I’ve said, realisation doesn’t necessarily equal change.  It is much more easy to preach than to practice!

The difficulty comes because I hate the idea that I’m in any way limiting myself, and I also fundamentally hate the idea and knowledge that there are ways in which my body restricts me regardless of adaptations and changes my experience.  The social model is really problematic here.  No amount of accessibility or reduction of prejudice is going to make energy levels completely equal between me and my abled peers.  There will be some who will argue that I’m underselling adaptations here.  That may well be so, but for me personally, there is always something more fulfilling about being able to do things ‘the abled way’ (and yes, I hate to put it that way, but I’m tired and can’t think of an alternative – feel free to suggest!).  That may be down to internalised ableism – in fact I’m sure some of it is!  But either way, adaptations fundamentally change the experience of an action or event and thus differentiate disabled people in that way.  A way of describing this that I’ve used recently – indeed on this blog, is that a prosthetic leg while an excellent substitute and adaptation is not the same as a human limb.  That doesn’t lessen it’s value or importance, but it does make it different.

This wanting to keep up, led recently to a period of burnout, anxiety and lately depression has been banging on my door, desperate to get into my head and rummage around.

It’s left me once again with a feeling of ageing prematurely.  Of being forced to slow down because of a body that cannot keep up.  And that leads to a whole heap of angst.  I’m about to turn 30 and I am knackered.  I’m not ready to feel old.  I’ve spent much of my twenties just trying to gain mental clarity, purpose and motivation.  I have those at last.  It’s all very well and understandable, and indeed entirely well-meaning when people tell you to slow down, but when you feel like you’ve been playing catch up for most of a decade, that is a harder sell.  It’s an ableist norm that I know I must break away from in order to prevent further burnout, but frankly I’m not entirely on board with getting rid of it yet.

It’s comparatively easy to realise one has to change one’s thinking about things.  To realise that these norms are toxic.  But when there isn’t necessarily an appealing alternative, doing so just feels like a concession or a lie.  I know I have to moderate my energies, or I’ll continue to burn out by about 4 in the afternoon, but sometimes there are no good options on how to do this.  The old adage that you should delegate a task to someone who is busy often holds true.  But there’s another truth yet to become an aphorism, that if you ask a busy person to slow down, they’ll look at you and ask “Where!?”.  I enjoy having a full life, and I’m not entirely ready to concede any of it to my body yet.

The mind is willing, the body is not.  Eventually I’ll have to concede that.  I’m just not ready.

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4 thoughts on “A Change is Gonna Come (But Not Yet): Why I’m Too Bloodyminded for this Shit.

  1. I wonder if “ableist norms” are as clear-cut as you suggest? 30 year-olds of my generation expected to be married and have at least one child and be paying the mortgage for their first home. 30-year olds I know (nieces and nephews and step- and goddaughter aged between 29 and 32, anyway) are doing all sorts of things this week- skiing in the Alps, working at their computers, seeing the doctor about persistent abdominal pain, feeding a new baby, attending a day-care centre for people with learning difficulties, trying to make a new building business stay solvent, stage-managing a play, giving up teaching piano but not being sure what to do next. They wonder if they will ever be in a serious relationship, they enjoy a new one, they already have a child from a commune relationship that was never going to be permanent, they date and are disappointed so they give themselves some time off. They are being themselves, at their own pace, not striving to meet some imagined societal expectation. Spend your time being you, as only you can: it’s your life. If that means taking a rest, take a rest- you’ll be able to enjoy the next activity then. “Ableist norms” of my parents’ generation would have me now in a blue rinse and twin set, dusting my ornaments as my main raison d’etre, but I have been in my walking boots tramping through the mud and fog to earn a long chatty lunch at a local cafe with a friend, because that’s what I wanted to do. “When I’m 64” would have us all booking that “week in the Isle of Wight, if it’s not too dear”. Never mind ableist norms or any other norms. No committee has ever sat down and written rules for how to live our lives at 30, 50 or 70. Write your own life story and enjoy every minute as much as you can, because there are no second chances. It’s not about being “busy”, it’s making wise choices about what’s both comfortable for you and makes you happy, and you can’t be happy if you are not physically and emotionally comfortable. Be kind and gentle to yourself, as you would like others to be to you, and things will fall into place about who you are and how you decide to spend your time.

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  2. Thanks for articulating thoughts I haven’t had the words for. I just resort to swearing which isn’t adequate. Just trying to work up the strength to go to the store triggers flashbacks of punitive arguments with people who just assume I’m seeking attention. Hard enough to adjust to fluctuating limitations without ableist bs from armchair quarterbacks. Thanks. I feel a little more human after reading your posts.

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