15 April 2009

More on work and disability

I try not to blog too much about my epilepsy because, to be fair, 99% of the time I manage fine. My seizures are generally few and far between, I can hold down full-time work and lead a fairly normal life, and self-employment gives me the flexibility I need to live with and manage this condition.

A few things happened today, though, that are worth noting. One thing that made me howl out loud with laughter this afternoon was discovering I'm being followed on Twitter by a PR for a major car manufacturer. I've not driven for around 20 years and, just at the time I was seriously considering resuming driving - in 1997 - I was diagnosed with epilepsy and kissed goodbye to my licence, probably forever now, being realistic. The other touch of irony is that I worked on a car magazine for 18 months at the start of the 90s.

Still on the PR theme, I received a press release from nPower today, bragging about their support for disabled sports. This is the same nPower that supplies my utilities and ignored 4 requests by me to change the card prepayment meters in my home for regular credit meters. Each time I asked, I explained patiently that swapping the meters was urgent because of the risk of being left without credit on the meters if I had a seizure. Each time, nothing was done, even though nPower operates a disability scheme called Warm Response (oh, the irony!). None of the provisions under Warm Response are actually any use to me as I don't need Braille bills, someone to read my meter or any of the other services offered to the disabled. The one thing I wanted took 2 complaints (one formal and very high up) to have it executed (on the plus side, I've been offered financial compensation). I shouldn't be too pissed off at nPower's lip service - it's only one of many companies that bungs a few quid at the less fortunate because the PR it brings them is more valuable. I'd just like to see a competent service delivered.

I have insomnia too, have done for many years, on and off - prolonged lack of sleep can sometimes be a cue for a seizure. I've had two simple partials in the last few weeks - that's too close together for my liking, but probably linked to me being slack about going to bed at a sensible time most nights and making sure I stick to a proper sleep routine. Worryingly today, I had a myoclonic jerk while out and about this afternoon. It was sharp enough to make me stumble and twist my ankle (and swear very loudly). I get the occasional myoclonic jerk either as I drop off to sleep, or during it. That was my first while awake. Now it might be nothing but I'm painfully aware that, having moved, I'm not currently on any consultant's list and it's reminded me again I need to see a neurologist for a fresh check-up. Annoyingly, it'll take me up to 2 weeks to get a non-urgent appointment to see my GP and goodness knows how long to get a referral. NICE guidelines say epilepsy patients should get a referral within 2 weeks but that only applies to new patients.

Where is all this leading? I have a nagging fear at the back of my mind. I'm painfully aware that epilepsy has already had some small damaging effect on the bit of my brain responsible for speech and vocabulary. Some years ago, I "lost" a handful of words and phrases forever. I want them and they are on the tip of my tongue but I can never grasp them or remember them. I sometimes lose my ability to speak during a partial seizure. That's not scary for me, just annoying that I can't briefly communicate.

Of far greater concern is my growing realisation that I am increasingly making errors in my work. I've always made typos - now I find it harder to spot them (I can still spot other people's at 100 metres). Sometimes after blogging, it'll take me 3 or 4 readbacks after publishing to see and correct my mistakes. Worse, I often forget to type a word - on readback, it's clear a word's been omitted. I see it in my tweets and forum posts and it's embarrassing. Or my mind will be telling me to type one word but I'll actually have typed something completely different It's not affecting my copy-editing work, but I'm having to triple and quadruple check all my written work now before filing. I have become heavily reliant on the spellchecker in a way that would have been unthinkable 5 years ago. As a professional wordsmith, it's devastating on many levels. As I get older, I wonder how long I'll be able to keep working. This has been my life for 30 years. I know nothing else, can do nothing else and don't want to do anything else. With staff jobs disappearing, that's not an option, although I suspect that even if I wanted to return to being an employee (which I don't), many companies simply wouldn't take me on because it would mean having to deal with my health issues.

So I guess I'm going to muddle on for the next 10 years or so and see what happens. I'm trying not to think about it too much, while knowing that I have to start thinking about it.
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John Bagnall said...

Wow, that's worrying. You have my sympathies and you're very definitely not alone.

I can't speak from any personal experience of epilepsy, but the pills I pop each morning remind me (because I'm often inclined to forget) that I have type 2 diabetes and a history of heart problems.

Meanwhile, I too find myself fumbling more often than I used to for a word on the keyboard I had firmly in mind only a few minutes beforehand, or reading near-gobbledegook which bears only a scant relationship to what I believed I was just typing. Sure, there were always some letter combinations which invariably caught out my fingers ('firend' for 'friend' and a few others), but lately such errors have become much more random - and commonplace.

I should now be in a pleasant interlude between 38 years of journalism, then PR and finally marketing; and an active future reaping the rewards of my - ahem - years of professional experience and achievement. I'm already taking some writing and communications workshops at my local university (and loving it), while my communications skills website/blog will be live soon, as a precursor to the book....

Or will it? When I'm having to devote more and more time to checking and re-checking copy for mistakes I never used to make? Or am scared stiff I might put up a page containing precisely the same basic mistakes I'm urging a class of students to avoid?

Most of the time, I don't lose too much sleep worrying about it. In darker moments, I fear Alzheimer's, diabetes, the medication I take, alcohol, too many late nights and all the other ways in which the 'chancer' inside me still contrives, from time to time, to try to buck the odds.

The one thing I'm sure of is that we can't undo what's made and shaped us; we have to play, at any given time, the hand we hold. It's most definitely not a pleasant experience to have to do so, with the professional and lifestyle changes that might entail, but I really don't see that there's an alternative.

Good luck, anyway. And no sermon intended.

John Bagnall

Unknown said...

John, thanks you so much for your searing honesty, it's really struck a chord with me. I know a surprisingly high number of people in the trade with disabilities, many far worse than mine, but until your comments, I thought I was the only way having trouble with language. I identify very strongly with your own issues, precisely because they are so similar to my own. It IS scary, isn't it!

Like you, most of the time I don't worry about it, but I have my dark moments too. Yesterday was one of them. I also am a chancer when it comes to late nights and alcohol and others I probably should have grown out of by now.

I don't pity myself, I pulled a short straw with the epilepsy (shorter than average as it runs in my family) but I think in many ways it's made a better person. I've become a lot more tolerant towards people with disabilities. Pre-diagnosis I might barely have noticed someone with a disability, except for an all-too-obvious wheelchair, but certainly I'd have given little or no thought as to how someone actually lived on a daily basis. I was quite shocked to learn recently that 1 in 6 people in this country has a disability. Living with epilepsy has been a real eye-opener in so many ways. And as a writer, it's also enabled me to earn money out it (my book on epilepsy is out soon).

Undoubtedly, the next phase for me is to look at as many workarounds as possible so I can stay in my career. But I also need a back-up plan.

Thank you again. Take care. x

ms_well.words said...

My sympathies to both Wordsmith and John, but I wonder whether you are both, to a certain extent, confusing the symptoms of your illnesses with something else.

Before I go on, please don't think I'm dissing your troubles - I don't have any experience of either epilepsy or diabetes (thankfully), but I do recognise the phenomena you're both experiencing.

So I wonder whether your keyboarding slips and trips, and the need to constantly re-check things is actually a symptom that most long-term wordsmiths suffer? Yesterday I joined a Facebook debate about people's spelling skills, and commented that I often struggle with simple words that I rarely use, and that the more of other people's errors I have to deal with, the more I accidentally incorporate them into my own work. [Note once again the argument for having a good sub!]

On top of that, perhaps Wordsmith, John (and I) are only too aware of the possibility of being "caught" making a silly error by our fellow professionals. This idea has stopped me from posting to a "well known" email group three times in the past week - I typed out a response, then decided I couldn't spare the time to check and re-check to make sure I hadn't made a mistake or inadvertently offended anyone!

There is also the issue of multitasking - trying to keep up with newsgroups, Facebook, Twitter, and doing your best to wrangle your clients' text into some sort of half-decent shape is, without doubt, a strain on the grey matter. I don't think any of us take enough real time out these days to give it a well-earned rest. On top of that, we're hypercritical of ourselves because we sit in judgement over others.

And as for the problems John mentions with scrambled typing…

I nkow ecxatcyl hwat uoy eman.

I went to Haworth (Brontes' shrine!) over Easter, and it reminded me that producing a manuscript (hand-writing) is a much slower process than clattering on a keyboard; you can't let your brain race around multi-tasking when you're trying not to make ink blots all over the place.

All the talk in the papers this week about Slow Holidays etc makes me think perhaps we should all try a bit of "slow thinking" for a change.

But of course it is possible that W and J are experiencing side-effects, and it can only be a good thing if you find work-arounds that suit you both - good luck with that. Don't forget, though, that many people find their concentration changes as they age (I know mine has, and I'm only just past 40).

Best wishes to you both.

Unknown said...

I can't speak for John, obviously, but I am absolutely certain that my problems are caused by my epilepsy.

Yes, I'm over-critical of my typing and checking regardless, but that's also why I have become ever-more aware of the problems I am experiencing. There's no way I can put down the loss of vocabulary to anything like too much multitasking or whatever. It's the direct result of the worst-ever seizure I experienced 5 years ago in which I ended up with severe concussion and almost died in a house fire.

I do check and recheck my typos when blogging or posting on professional forums - I can't afford not to. But I frequently make typos on Twitter and don't care too much about it. Probably because everyone else is tweeting as quickly as I do.

I sincerely wish I *could* put my problems down to the things you suggest, but the sad truth is they are a direct and increasing part of my disability.

John Bagnall said...

John here ...

ms-well.words' comment has struck an important chord for me.

The heart problem I mentioned in my first comment relates to a major heart attack I suffered in 1986. The specialist who treated me believed that my problem was less an illness than a symptom of a poor lifestyle. So, in the months which followed, I stopped smoking, adjusted my diet and began to enjoy exercise.

More significantly, the aftercare and therapy I received helped me to dismantle many of the inner mechanisms and reflexes which defined me - I learned - as a textbook 'type A' personality.

That's someone who's competitive, aggressive, opinionated, determined to be proved right, obsessive, perfectionist, self-critical...

My diabetes was picked up around 2002. At the time, the diagnosis came almost as something of a relief. It seemed to explain much of what I felt was happening to me but couldn't otherwise explain, including many of the professional issues I was beginning to experience.

As with the experiences of epilepsy W has described, I've since learned to sense what my blood sugar levels are doing and - if necessary - take appropriate action. I'm also fortunate that my diabetes was detected at an early stage and - thus far - I haven't had any serious control issues.

But M's comment has got me wondering if my 'inner chancer' (aka type 'A' personality) hasn't been using the diagnosis to resume and camouflage some unhelpful habits I'd formerly resolved to leave behind.

If that's so, then M's take on multitasking and the importance of taking time out for 'slow thinking' is something I need to re-commit to.

Coincidentally, I've just invested in a fountain pen, with the intention of spending more time, at least at the outset of some new pieces, on 'writing' rather than 'keyboarding/spell-checking'.

I'll let you know how I get on.

John Bagnall