A Day in the Life of a Spoonie-Crip: Notes from the Tightrope

Today is a challenging day. It’s not particularly unusual, but it is difficult – more difficult than some days. There are lots of things that I am failing to do. However, one thing I can (just about) manage is to speak my thoughts and experiences and record them here. I have two reasons for doing this:

  • I am in my flat with no one except my cat for company. I feel desperately alone and sharing things here on my blog is one way of feeling “heard”. When I am this weak and incapable, feelings of being “abandoned” and “vulnerable” are particularly acute. The wheels of Disability Bureaucracy grind exceedingly slowly, and the time spent waiting to find out if you will be provided with support you have been assessed as needing can be particularly distressing.
  • Much experience of disability is absent from collective social consciousness and social imagination. There are disabled people who are unable to narrate their experiences, or to whom a way of doing so that is accessible to those around them remains elusive. Also, the very process of narrating our disabled life experiences involves navigating a tightrope of social norms and preferences, as by definition many of these experiences transgress that which is considered socially “acceptable”. This means that taking up our place in social discourse means necessarily setting ourselves outside of the bounds of social legitimacy – revealing ourselves as the possessors of bodies and minds that are outside of our full control: that disobey our instructions, that wobble, that shake, that leak, that bleed – that fall short. But being “hidden” is unacceptable to me. I have a voice, and I want to use it. I want to take up social space, and I want my needs, desires, and concerns to contribute to social consciousness. Recording my thoughts and experiences here is part of my trying to figure out how I negotiate the personal tightrope, and contradiction that arises from this dilemma.

So here is what my day looks like:

The Physical

I am exhausted today. I need to clarify that – many people, indeed most people will have experienced “exhaustion” so will think they know what I mean, but I want to be clear. I want to do my best to make sure we are on the same page. I am pretty much always “tired”. I wake up feeling worn out, and my daily life feels like a constant battle against falling asleep. Whatever I appear to be doing, I will also be engaged in this battle below the surface. My attention will be divided between whatever you see me doing, and the efforts of keeping awake, silencing pain, and keeping control of my body. That endeavour in itself is tiring. But that is my “normal”. So when I say that I am “exhausted” I mean that I am experiencing something that goes beyond that “normal”.

If you have ever been so completely physically fatigued that you cry uncontrollably, that speaking makes you feel sick, and that you can’t control your body enough to sit up, or to raise your arms, or support your head, that is the kind of “exhausted” I mean. And as ever, the phenomenon doesn’t just affect that which is visible from the outside. This kind of exhaustion also affects your internal organs – particularly your digestive system. The consequences of this physical malfunction are on the “wrong” side of my own personal “tightrope” of things I can and cannot bring myself to discuss publicly. But managing these experiences, particularly with the level of fatigue that causes them, is in itself exhausting. And my inability to bring myself to describe them in graphic detail causes me problems when this is expected of me to try to access help with them. My advocate, my occupational therapist, and my physio are all examples of people with whom I have struggled to navigate that tightrope. Disabled existence is often a balancing act between protecting my dignity and accessing appropriate support.

I am uncomfortable. I am sufficiently medicated to manage my current pain – in fact, today pain is less of an issue than fatigue. However, I can’t sit myself up comfortably in my chair and part of my back rest is digging into me. Again, not the end of the world, just another thing to deal with. I have spasms in my breathing, which means that I do sharp intakes of breath, or sigh involuntarily. It strains my muscles, I am also freezing cold, as a malfunctioning nervous system means I can’t regulate my body temperature effectively. I have an electric heat blanket on my bed, under which I think I will go and hide when I have finished writing this. I am also hungry (I haven’t managed to eat anything today), and I really want to be able to get washed – but I can’t take care of these needs safely and independently on a day like this.

The Emotional

I feel useless, and I feel like a failure. I should be working – but although I am able to speak these words to my computer in order to record this blog, I currently lack the physical and mental energy and strength to do the things I need to do for work. I need to be able to use a mouse, and to pick up and manipulate bundles of documents in order to do that which I should be doing today. Also, I learned the lesson a long time ago, that if I keep trying to work through days like this, my body just throws worse at me. It keeps shouting at me until I have no choice but to listen to it. I am very lucky, in that I mostly have sufficient autonomy in my work that moving things around and working a “non-conventional” schedule are options. This means that my sickness record does not get too out of control (always a concern when looking, or needing to change jobs), but it does rather mean that my life is basically taken up by working or recovering from work. I do love my work – but there are other things I love to do as well.

I also feel a bit like a fraud. The nature of my impairments means that there are not so many things that I absolutely cannot do. Rather, it is more the case that where a typical day for a typical person may be equated with a “gentle stroll” or a “brisk walk” for me it equates to running a marathon. Similarly, I can do things like “walking” (with two elbow-crutches, slowly, and with a determined grimace on my face) and in my brain that becomes the same as regular walking, so I tell myself that I don’t really need my wheelchair and could walk like regular people if I tried. Then I remember the times when I did used to try to walk like regular people, and I realise I can’t, and I get upset and frustrated with myself.

I feel very sad. Last night I dreamed I was walking in the hills by my old house. I used to do this every day during the first couple of years of my PhD. Growing up, and living in the South Pennines, I have always been hugely blessed to have beautiful green places right outside my front door. Given that most of my work involves sitting at my desk in front of my laptop, thinking, and writing, getting outside and “clearing my head” used to be an integral part of my daily routine. I used to walk three or 4 miles most days. My other passions were competitive distance running, swimming (and generally being in water), and dancing. Sometimes, I dream I am doing these things, or I see other people doing them, and for a split-second I forget that I can’t do them anymore. In these instances, it feels like life is a continuous process of hitting brick walls. It’s painful.

Mostly, I feel overwhelmed. The basics of life require so much more of me than I can manage on days like this (indeed, on any day – today it is just more noticeable). Everything, not least the constant onslaught of bureaucracy that goes with being disabled, feels that much more impossible when you have no fuel in the tank. I’m getting better at putting things aside for a “better day” but the trouble is that they are still there waiting to spoil the “better days”. At least then though, I generally have more reserves to deal with them.

I need to stop now, as I’m too tired to keep talking. Thanks for reading.

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