Some facts and trivia about my recent radio interviews
on Hack (on Triple J) with Steve Cannane:
- This was no spur of the moment interview! If it had been a matter of me being phoned up out of the blue and asked for an interview then and there, it’d never have happened! For a few years now I have only been able to use the phone very rarely, only for doctor’s appointments really (as I am unable to do those in person) and I have a lot of trouble with it. Actually I knew that the interview was (probably) going to happen around 10 days beforehand.
- For the first week or so of that time I spent an hour or two each day thinking up possible questions that I might be asked and trying to come up with answers, and going over these answers over and over again (so I wouldn’t just go blank and not say anything in reply to every single question!). Many of the answers that went to air were ones that I had practiced many times over beforehand.
- For the 3 days right before the interview, I made sure I didn’t do much of anything, even talk. I tried to put myself in a kind of meditative state so that I would be able to focus a bit more and think a bit more clearly than usual on the day.
- For me to even have the possibility of managing a phone call, calls have to be between either 5 – 5.30pm or 7 – 7.30pm. If the call had come at any other time than within these time limits, the interview wouldn’t just have been not as good or as coherent, it wouldn’t have happened at all! (I’m unable to talk much at all for 22 – 23 hours a day most days – a fairly standard severe M.E. thing.)
- When I am able to talk, I usually do so in one of two ways: either quite fast, high pitched and kind of loud (and a bit brainless – I talk over the top of other people a lot and don't listen to what they are saying properly); or speech is very difficult and slow, sometimes even a bit slurred and I can say only a few words at a time – those are my two normal modes of speech. I really don’t know where I found the mild and measured tones of this interview and nor does anyone I know! My whole family said they’d never heard me talk like that before. They all agreed that I sounded great – but nothing at all like I usually do.
- I also knew the exact time the call would come so I was able to prepare myself physically and mentally right up to the very minute of the call which was very helpful.
- Although the interview that went to air was around 12 minutes long, the phone call actually went for around 3 times as long as that and was in a completely different sequence too. I was very happy to find that all the things I remembered I had said that I wished I hadn’t didn’t make the final cut. The quality of the final interview owes a huge debt to great editing!
- I had forgotten not only the question I was asked but also the first part of my answer by the end of each and every one of my sentences in the interview (another pretty normal thing for someone with severe M.E.)
- By the end of the interview I couldn’t remember almost anything I’d said during it, just a few random and disjointed bits and pieces. Over the next few hours and days, bits and pieces came back to me but a few days after that I’d forgotten most of it all over again.
- When I heard the interview on the radio a week later, around 80% of it was completely new to me – I just didn’t remember most of it even vaguely, and so just like my sister and the rest of my family and friends I listened closely to hear what I was going to come out with next! It was actually kind of fun (even if it was fairly bizarre!).
You couldn’t tell any of this really by just listening to the interview though could you? Of course not!
This ability people with Myalgic Encephalomyelitis have to be slightly flexible in their abilities sometimes – to spend many days or weeks functioning well below their normal level in order to have a few minutes or hours of slightly higher functioning – is one of the very best and the very worst things about the illness.
One of the best because it occasionally lets you (for a short period of time) do things you are not well enough to do at all usually; or lets you do them to a much higher standard than normal – albeit at an enormous physical cost both before and afterward.
One of the worst mostly because of the enormous physical payback and ridiculous amount of time that must be spent preparing for and recovering from such short-lived events; but also because of the erroneous impression given to the casual or superficial observer about what a persons actual illness-imposed day to day limitations and normal abilities are.
A comment I have heard quite often in the last few days (by email) is: "You sounded so normal. I thought you said you found phone calls really difficult? It didn’t sound like it."
My response: "No, it didn’t – wasn’t it wonderful!"
Even I am quite amazed at how ‘normal’ I managed to sound! I don’t know how I managed it either really and I couldn’t guarantee I’d ever be able to do it again, I'm just really happy I did. But if anyone thinks this is how I am, or how I talk all the time then they are very much mistaken.
The thing to always keep in mind when you know someone with M.E. is: you really can’t tell just by looking (or listening) how high a cost a M.E. sufferer is really paying for that short glimpse of seeming ‘normality’ you’ve seen.
Because of the nature of the illness, making assumptions based only on a small amount of the evidence will often give you completely the wrong idea where M.E. is concerned… along with just about every other thing in life probably!
I explain this not to draw attention to the facts behind this interview in particular, but rather to make an important point about M.E. sufferers in general. This was just an irresistibly convenient example of something that everyone could look at (listen to) and know exactly what I was talking about (hopefully!).
Best wishes,
Jodi Bassett, August 29th 2005
[In relation to this example however, it must also be remembered that many people with very severe M.E. even given twice as long to prepare for such an interview, would have been too ill to even ATTEMPT it, let alone have managed to speak anything like as ‘normally’ as I did.]
