My October post is part of Chronic Voice’s Linkup Party for people with chronic illness. She provides prompts for the structure of the post.
In general, those of us with chronic illness disability don’t like to be considered inspirational. Getting ill certainly isn’t an achievement, or a sign of virtue, and it can happen to anyone. Though it perhaps does limit the amount of wrong doing we can commit!
However, what I do find inspirational is when people from our community achieve things which would be notable regardless of disability status. The most obvious right now is Jen Brea’s Sundance award winning documentary Unrest (currently in mainly art house cinemas nationwide). I haven’t seen it yet, at the time of writing, I’m hoping to see it at the weekend if I’m well enough to go. From the snippets I’ve seen early on in the fundraising process, she was worse than I am now when she started the film. I’m worried I won’t get to the cinema to watch it and she went ahead with making a credible documentary. It is mind boggling to fathom how she achieved this. How did she do it?!
Actually I have read hints at how she did it. She would film for a day then rest for 29. She directed from her bed at home via the internet. The practical details don’t take away from the inspiration for me, they demonstrate perseverance and ingenuity to overcome obstacles. Something inspirational that Jen Brea seems to embody is contagious relentless optimism that the future can be better for us, combined with an instinct for knowing how to make stuff happen.
I need to rest a lot. I don’t sleep as much as even an average person. This results in swathes of time daydreaming and contemplating existence.
A horrible sensation with chronic illness is that the years are evaporating with nothing in them. Since my 2012 relapse something I have from time to time contemplated how to make this phase count, even if I can’t do anything. I explored this in my posts on Modern Stoicism: perhaps in the adversity of chronic illness I can train my character in a way that will serve me throughout my life?
I also have more superficial daydreams about a future well me. In bed contemplations I can combine memories of past insecurities and daydreams of overcoming these. A seven year old me feels bad about herself, because she couldn’t hear well enough to sing the pitch of the piano key, and wasn’t picked for the choir. A future well me is belting out songs in a public karaoke bar.
Will wishing it make it so? I don’t really believe in that. I think most things are achieved through hard graft and boring repetition, unfortunately for those of us who can’t work hard or do things repeatedly. What we do have going for us though is unstructured time and internet access. The internet is an amazing tool, and you can learn just about anything from YouTube and MOOCs.
So this week I’ve decided to tackle my singing insecurities head on. First of all I used the app ToneDeafTest. To my surprise I scored 100%. My ability to listen to pitch is fine. This was a big step forward in terms of confidence that I can sing. My understanding is that I just need to hone my ability to match the tone I hear with the sound I’m making. Apart from needing the energy to practice, there’s no reason I can’t sing moderately well. I don’t have any daydreams of winning X Factor, this is purely about confidence to sing in front of other people.
Now I’m doing short practice exercises with the app Vanido (about 5 minutes a day). I’m having some issues with volume but apart from that it’s a great teaching app and it does ‘listen’ to my pitch, so there is some feedback and I can see a representation of how my voice matches the iPad sound. I’m also watching some YouTube singing lessons such as the perhaps overly ambitious
A previous skill picked up through free internet learning is basic graphic design. I did the Coursera California Institute of the Arts MOOC courses which I really enjoyed. My partner and I had serious plans to start a shop with some of our own surface designs. Now she has a demanding full time academic job and I’m not well enough to do it on my own. We do have the equipment though to sublimate images onto objects, and I’m thinking about designs for Christmas presents.
Last year I designed a Leonard Cohen Memorial Pouffe for my other half and my mother-in-law sewed it together, but so far I can’t think of any ideas like that:
If you’ve read my last post you’ve probably picked up that this post also isn’t about the course Calling Bullshit. I’m a bit better than last month but my cognitive stamina is still much reduced. I’ve had to adjust my pacing down a notch, which is always disconcerting. I’m only doing cognitively demanding things before 11.30am and then an alarm goes off. It has actually just gone off, and I hit snooze, so I must finish this post here.
If you liked this post try:
The one about chronic illness and identity
One of the ones about Modern Stoicism and Chronic Illness adversity
Or an epic one on 10 insights on life from the perspective of chronic illness