Sunday, September 09, 2007

Afraid to Fail?

A couple of months ago, a lovely and well-meaning friend commented to me that I could get a job as a curator of a gallery when I finished my masters. At the time I responded by flippantly agreeing that I could, if they were happy for me to do the job from my bed. The suggestion was so obviously well-intended, that I did not even consider trying to explain how far from my true capacity a full-time job was.

Last week, over on velo-gubbed legs I read this extract from NMJ's soon to be published novel which stars as its main character, a young woman with CFS/ME.
Extract from 'The State of Me' (Ch 34) (Main character, Helen Fleet, talking): "I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all next day because you went."

And I realized that is the problem - they don't see how our life is, day by day. Hopefully, books like NMJ's will help with this problem. I think it is our responsibility to let PWOCFS (people without CFS) in to our lives so they can see what it is really like, because it comes back to people's expectations about a person who is ill, or a person who is disabled.

At present, the understanding seems to be black and white, an all or nothing condition. So if I can apply to do a masters, and be admitted to do it, then I must, basically, be normal. Even if I am currently in my fourth year of a three semester (full-time) course. I'm not sure what this means they believe - do they think I am faking? Or do they think I am recovered? I'm not sure. It's been a long time since anyone really suggested to my face that I wasn't ill, although I still occasionally sense someone eyeing me suspiciously, as if, perhaps, I am exaggerating wildly about the level of difficulty I have to live with.

There is another thing I think people who don't live with a chronic condition find it difficult to grasp. It is the fact that just attempting something when you have a chronic illness, is actually succeeding. If I sat at home and did not try to do things, then sure, I wouldn't fail at them. However, I think I might be failing at living my life, because setting goals and working for them, is as much a part of who I am, as being female is.

My husband commented to me the other day, that the chances of me actually completing this masters have never been better than 50:50. It made me stop and think, and I realized he is right, and I remembered that in the beginning, I was very clear about that in my own head (of course I didn't tell anyone at uni that!)

The thing is, I love to learn, and you don't need to complete a masters to still learn a lot from participating in the programme. If I don't manage to graduate, I will still have vastly increased my understanding of art, and my own practice. It's about the journey, as "they" are always saying. But I think "they" might also believe that I have failed if I don't finish. And maybe I will have, but that's okay, because you can't fail if you don't try...and I'm definitely going to keep trying.


  1. Kirsty Hall10:17 PM

    Oh Amanda, as a fellow artist with CFS, I relate to this so strongly. I was thinking about it just last night - about how I have to clear my calendar if I want to do something big so that I can rest before and crash after. I went to my brother's wedding last weekend and a week later I'm still recovering. And people just don't see that: they see that I'm still exhibiting, still making work and still blogging and they think that means I'm well. They don't see all the opportunities I turn down or all the work I don't get made or all the jobs I don't apply for because I know I can't hold down even a part time paid job.

  2. Very well said, and I agree with you when you say that just attempting something is actually succeeding.
    In saying that though I admit that I have been guilty of at times not trying because it was too hard. I was afraid of failing and not being able to cope with the thoughts that failure threw at me. It was much more simple to just not try in the first place.
    I realised that by my not giving something a go I was actually depriving myself of the whole experience, it was letting my condition live my life and dictate what and who I was and I didn't want that. It's far from easy but I am really trying for my own sake to just have a go regardless of outcome.
    I am learning that sometimes just trying actually can be enough.

  3. Aine here and as someone living with pain every day because of my Scoliosis, of course I totally identify with all that you are saying Amanda as well as Kirsty and Azirca.

    The other day it was last Thursday I was just in floods of tears because of something I said in response to my partner. I think it was something along the lines of "well I just get really 'down' because every thing is such an effort and I get tired of always trying to push through the pain."

    I somehow touched something with in myself. I don't seem to be able to cry that much anymore these days. ( possibly my medication )
    It seemed to have done something within me though.... as I have been able to sort of get 'unstuck'. I can see from your next and latest entry that you have moved along in the sense that you managed to get yourself along to that book fair which sounded fabulous. I wonder if there would be the possibility for an artist such as myself to show a book at that fair next year. I am probably going to be working on a new bookart piece soon.

    It's bedtime now so I had better go....I just hope that my cat doesn't turn up in the night again with some poor unlucky little mouse as a plaything. There have been 3 in the last 2 days!! I managed to rescue them though and set them free.