Disability, Spoons and Cats

Recently I realised that my elderly cat has gone completely blind. She’s probably been getting that way for some time, but for ages I mistook it for other things. When she meowed to be let in, then hesitated in the doorway, I would get impatient, thinking it was the usual cat-thing of “Oh! The door is open! Hmmm, do I want to go in or not…” Being a typical cat, in other words. But then I noticed she was blundering into furniture, and one day she fell off the deck. I’ve never seen such an expression of feline terror in my life. (She wasn’t hurt, just scared.)

Since, then, I’ve been watching her negotiating her environment, learning to feel her way to where she wants to go. It’s as if she’s saying to herself “okay, couch, couch, chair, couch, my food should be straight ahead, oops wall, okay fridge, the food should be here somewhere…” Her bowls are just a couple of feet further, but she will still deviate off course, blunder into the cupboards or stove or even the laundry, walking right past the food, and turn around a few times before finding it. Finding her way out is equally roundabout and laborious. (Yes, I do sometimes take pity on her, and take or guide her to her food, but it’s not always obvious what she wants, and I think she has to learn her own ways to where she wants to go, as I cannot be with her every minute.)

But in watching her, it’s struck me all over again just how labour-intensive it is, having a disability. Sometimes, she just gives up, and settles down for a nap, wherever she happens to be, in a corner or doorway or right in the middle of the floor. I know how that feels, when your spoons are all used up for now, and you just need to quit trying, and rest. She sleeps a lot, and so do I.

All of which reminds me of how exhausting life was when I broke my ankle and then my hand, and was in a wheelchair for several weeks. Even the smallest thing, like getting up from the couch, or fetching something from another room, took a lot of time and energy. I am fortunate, yes, as I can walk again now, but the ankle will probably never be what it was, and still gives me problems. Add in arthritis in my knees, Chronic Fatigue Syndrome and being autistic, and the simplest things can still consume a lot of my spoons. 

Take something like a simple walk round to my local shops – something most do without thinking twice about it. For me, it starts with estimating whether or not I have the energy to walk, and how sore is my ankle already, or should I drive. I’m photo-sensitive, so I have to make sure I have my cap and sunglasses. I literally watch every step I take, as any misstep will cause (added) pain. As there’s no footpath on my side of the street I have to be extra careful of some patches of rough, uneven ground. And I sometimes think – if it’s this difficult for me, how much more so is it for those permanently in a wheelchair? When I was in one, I found the most trivial things were an obstacle or a trial – kerbs that didn’t look that high, or those pretty-looking cobblestones in our town’s main street, which actually rattle the bones something dreadful.

And when I do get to, say, the supermarket, there are more challenges. Maybe it’s more crowded than I thought it would be, or I have to hold my breath walking past the seafood counter, as it’s particularly pungent today. Or I need something from up high – the strength and balance of my ankle is not what it used to be, and I have a very real fear of falling. Or they don’t have an item I need – inducing oh-God-what-do-I-do anxiety, even panic or near-meltdown. I have to negotiate all of these, all the while my ankle is hurting, my knees not wanting to take the pressure of pushing a trolley or carrying a basket, and I’m starting to wonder if I’ll have the energy to walk/drag myself home.

My life is full of daily negotiations like these. When I walk down my front steps, the ankle, knees and still-tight calf muscles and tendons mean I need to hang onto the railing. (Steps without railings now make me shudder.) Going up them is not much better. Arthritis doesn’t only cause pain, it makes the joints weaker, and so I must use extra energy to push myself up each step. My days of bounding up flights of stairs are gone. Even getting in and especially out of my car can be tricky, I have to manoeuvre so that both feet swivel through the door at the same time, pulling my bag or bags with me, all the while trying to prevent my elbow from accidentally beeping the horn! Getting in and out of bed is also a matter of calculating movements. Going anywhere is a matter of looking at what it will take, what I might face there, and so on.

Other disabled can no doubt supply their own lists of such daily negotiations, the things that consume their spoons. I have of course always been autistic, and sadly when I was younger I didn’t know why I struggled with so many things others found easy. I thought I was somehow inferior, a lesser breed of human being. 

There are many non-disabled who still think this of anyone with a disability, they think that it’s a fate worse than death. Literally. When I was younger, I leapt up steps and blithely walked for miles. When my cat was younger, she would saunter in and go straight to her food or the couch. When you’re not disabled, you don’t give such things a second thought. And so people don’t really see how often we have to, how we not only start out with fewer spoons, but use more of them in everything we do.

But having to do this, to make these constant little, or not-so-little, calculations and negotiations, doesn’t mean we’re lesser beings, or to be pitied, or scorned, or shunted aside and ignored. We’re not ‘better off dead’. We’re human beings, even with our extra trials and tribulations. We need accommodations and support, yes, but most of all we need understanding and patience from others. I have this to say to them - if we say we can’t do something, take our word for it. If we say we need to leave, don’t scoff at us. If we struggle with something, don’t say ‘It’s not that hard’. Accept our truth – because who knows, you might live it someday too, or someone close to you might.

Update!

I know I haven't posted much this year, I do apologise if you've been checking fruitlessly. It's not been a good year for me, the latest thing is that on the 31st May, I fell and broke my ankle rather badly. This has meant I have had difficulty getting to an internet connection to upload new posts as I don't have internet at home. It also means I've been even more short of "spoons" than usual. This doesn't mean I haven't been writing though, and I hope to get some new posts up soon. Keep the faith people!

The Spoon Theory, CFS and Aspergers

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/comment-page-19/#comment-86592

I found this website through a link on a Facebook group, and it’s well worth a look, especially if you have a long-term, ‘invisible’ illness or disability – or if you haven’t, as it will give you some idea of what it’s like to live with one.

I contracted Chronic Fatigue Syndrome in my late 20s, though it took another ten years, and a severe relapse, before it was diagnosed. Back then, it was a ‘new’ disease, and just as is starting to happen with Aspergers now, many of us who had it were derided as ‘riding on the bandwagon’ of something ‘fashionable’. We were sometimes told “it must be nice to just lie around and rest!” But believe me, there was nothing ‘fashionable’ about it (it was actually being diagnosed as far back as the 1920s, under different names). Nor was there anything ‘restful’ about being so weak I could barely walk, or lying awake well into the night sobbing because of the pain in my muscles, or being unable even to read or watch TV or have more than the briefest of conversations, because the mental effort was just too taxing.

I have long measured my illness in elephants. Years ago, I read somewhere (sorry, I can’t remember where, so can’t credit it), that having CFS is like having an elephant sit on you. I can personally testify that yes, you do feel that ‘crushed’ and broken. When my illness was at its worst, ‘elephant days’ were pretty much constant, thankfully they are now few. Many days are ‘elephant-free’, though I still don’t dare overtax myself. And on yet other days, the elephant sort of …hovers. Those days, I must be especially careful when I ‘measure my spoons’, when choosing what and how much to do.

There are of course many parallels between CFS and Autism, and the spoon theory will resonate with many on the spectrum. We on the spectrum must also calculate what’s within our capabilities. If we go out shopping in the afternoon, we may not have the mental, physical or emotional capacity to do anything ‘social’ in the evening. If several hours of our work day are taken up by a meeting, we may be too ‘empty’ to interact with a partner later. And so on. Even the simplest things take so much more of our time and energy, we have a social ‘thimble’ rather than a social ‘cup’, and we must be careful not to stress ourselves to the point of meltdown or shutdown.

And like so many with invisible illnesses or disabilities, we get little sympathy, because no-one can SEE our pain, our suffering, our exhaustion. Or not until we totally freak out or collapse or go into meltdown. And even then, we can be judged, told we are ‘making a fuss about nothing’, or ‘being a drama queen’, or to ‘pull yourself together!’ Etc, etc, etc. If you’re on the spectrum, and/or have a major ‘invisible’ disability, you’ll know the sort of thing I mean. It’s things like this, that see so many on the spectrum identify with other disabled, and some even join the disability rights movement. Personally, I don’t have the energy. (Calculating those spoons, those elephants, again.) But I do understand why.

So give it a read. Let me know what you think. And if you don’t have a disability, and/or aren’t on the spectrum, then maybe, next time someone who is, or who has one of those ‘invisible’ disabilities, tells you they can’t do something, believe that they really, really, can’t do it.