My struggle to change my attitude towards epilepsy continues. Just when I’d managed to calm down a bit about it all – even arranging to see the specialist nurse, which I had previously refused to do - it’s got difficult for me all over again.
And it’s all because of something that is meant to make things easier!
I haven’t got time to worry about the possibility of having another seizure when I start to come off the tablets because I am so busy worrying about not being able to drive for at least four months. I live 30 miles from where I work and as public transport would take me about two-and-a-half hours my husband, parents and in-laws have all offered to be my chauffeurs at great inconvenience to them.
But when I heard about the Access To Work scheme through a friend at work (whose husband is responsible for the scheme in our area) I thought this could be an answer. This is a scheme run through the Department of Work and Pensions to help people whose disability or health condition stops them from being able to do parts of their job. If I was eligible for the scheme, Access To Work could subsidise the cost of a taxi to and from work – saving my family a lot of time and inconvenience.
The only problem is, I have to define myself as disabled under the terms of the Disability Discrimination Act, and right now, I just can’t do it. I just can’t put that label on myself – even if it is just a box ticking exercise.
The DDA defines a disabled person as “someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities”. And that just isn’t me. Even in 1999 when I had my seizures, about six weeks later I headed off to Germany to teach English and lived in a flat on my own for almost a year. It has never stopped me doing anything. The only thing I won’t be able to do is drive. And if I do have another seizure, presumably I will start taking the medication again and be just where I am now again, just with the extra worry of how to avoid any potential harm to any potential baby and no driving licence for a year.
I realise that “disabled” is just a word and that the label is only for the purpose of the application for the AtW scheme, but somehow it is a hurdle I can’t cross at the moment. The chap who was running through the application with me over the phone was so nice and was trying to help, but we couldn’t go any further because I couldn’t (or wouldn’t) answer yes to the first question. He tried asking me in other ways to try to help me decide but it was no good. I kept apologising to him and said “I bet other people aren’t as much trouble”. “You’d be surprised,” he said, wryly.
And it’s not just the label – it’s the ethical question of whether I truly believe that this definition is accurate and therefore that I would be eligible.
I’m supposed to ring the chap back tomorrow but I think I will ask him for some extra time to think on this.
Words are powerful.
You are right – words are powerful, and they do mean things. And I can fully sympathize with your plight. None of us wants to be labeled with those things that are perceived as “bad” somehow.
Perhaps if you think of it like this: Say you’re expecting a baby and your doctor puts you on bed rest for whatever reason, for the last 4 mos of your pregnancy. You would take whatever help was offered to you, right? Even though you’d have to agree to the term of, toxemia, for example?
Maybe thinking of it as temporary will help, it’s doctor’s orders too so it’s completely ethical for you to take the help that’s offered. Your doctor would confirm that this is an impairment, albeit temporary, that will prohibit you from driving. Then too, it would lessen the inconvenience to your family.
You say the definition doesn’t describe you – and you’re right, it doesn’t. But the definition does describe the impact of the medication transition. So really, it’s not a label on you so much as a label on the medication.
Sometimes it’s hard to take a hand that’s offered. It’s admirable to take care of yourself – but sometimes we just need each other, and that’s perfectly ok.
You’ll make the decision that’s best for you and your family hon – I have faith in that. 
I think DarcsFalon may have hit on a solution for you here.
Would it make you feel better if you looked at it like you’re only putting that tick in that box as a temporary measure?
Alternatively, see if work will let you work from home for one or two days a week.
Be strong. Am thinking of you xxx
Thank you, you two, that is really helpful, not to mention kind
I am starting to calm down about it all but am waiting until my parents get back from their hols tomorrow so I can have a heart to heart with them.
Work originally said I could work from home one day a week but now they’re not sure whether their insurance would cover it, just in case I have a seizure while I’m working from home on their time….
My head knows all the rational arguments but my heart is still protesting!
I am so annoyed for you that this is the hoop you need to jump through to qualify for the financial assistance, but as I said to you on the phone the other day, if you, just as you are right now, qualify for it, then you should go ahead and take it. I would hate to have to refer to myself as “disabled” but as someone said above, it’s just a temporary situation. It’s bureaucracy that you can use to your advantage, not something that changes the great person that you are. I would imagine (speaking from no experience whatsoever) that this might be something that’s really hard to do, but once you do it, you will be glad you did and it won’t seem so bad in hindsight.
I’ll try to call you on Wednesday to find out about your appointment and to let you know how mine goes….boy?girl?
Just to let you all know (because you’ve all been so nice!) I rang the guy back and told him that while it was just the four months I was not going to apply to Access To Work, but that if I ended up having another seizure and losing my licence for a year I would call him back.