What’s your MS called?
I thought the recent feature about “The song that best describes my MS…” was really interesting, because I’ve been meaning to write about this for a while. Albeit from a slightly different angle…
The ones in the top 5 were on the whole really defiant and ‘rabble-rousing’ – really positive!
A couple of years ago my wife and I went to a whole-day seminar about “Working With MS” – there were a lot of really useful sessions (and handouts! Many handouts!). Some presentations focussed on the legal obligations which employers have towards people with a disabling health condition, while some were about fatigue management and changes that can be made to the workplace which could help to keep us in work a little bit longer than otherwise.
I’m not going to try to cover all of that here but I will point you to Working Yet Worried, a toolkit that the MS Society made which has some great information in it, not just about legal rights (which may be a bit too UK-centric) but also about if/when/how you should disclose your condition to colleagues.
One of the sessions was about Cognitive Behavioral Therapy and in particular a publication called Shrinking The Monster. It’s no longer available (I think it’s being reworked), but here's the description from the time:
Written by Jo Johnson, a neuro-psychologist, this workbook can help you recognise, name and tame the ‘MS creature’ who takes up residence, uninvited. This way of thinking about your MS doesn’t suit everybody, but many people who have used this approach seem to find the idea of shrinking the monster increases their feeling of control. Drawing on cognitive behavioural therapy and narrative therapy, Shrinking The Monster tackles serious, personal issues, but can be used and discussed with the whole family including young children.
Now I must say that I couldn’t really see it at the time – even though back then I was a bit of a newbie-convert to CBT.
But my wife (who doesn’t have MS) looked through it and she thought it was a really great approach to lessening the impact that the Monster can have.
And she also named mine – Gaucho.
Now as it says in my bio, I’m a bit of a music nerd – I’m passionate about music of pretty-much all types, from Jazz to soul to alternative rock to hip hop to country and everything in between.
But being a man of a certain age, I have developed a taste for the smooth jazz-rock stylings of Steely Dan. And the title track of their album Gaucho is one of my favourite songs.
And like many Steely Dan songs it’s about a particularly unwanted character who’s a little bit sneaky and a little bit sleazy. An unwanted presence in our life - something ugly and creeping that is always there, skulking in the background.
As a description of my condition, it’s pretty spot-on (although I don’t own a poncho – spangled, leather or otherwise):
Who is the gaucho amigo
Why is he standing
In your spangled leather poncho
With the studs that match your eyes
Such as your friend
Will never be welcome here...
Ok so you've talked about which songs you feel best describe MS.
If you had to give it a name and a characteristic (a one-line bio, maybe), what would it be?
How well do people around you understand MS?