- living with epilepsy
a book by Julie Dennison
By the time I had reached sixteen,
the headmistress and the teachers had come to the conclusion that I should
not sit my O-level examinations. I never did find out why. Perhaps they
thought the stress would bring on seizures, or perhaps they thought that
I wouldn't pass them anyway. Of course this made me want even more to
sit them. Whether I passed or failed wasn't really the issue here, I felt
that I had the right to sit them. The school was very unhappy about this,
and made me sit in a separate room from all the other girls. They even
asked my mother to be the invigilator for the exams. The school seemed
worried I would upset all the other pupils should a seizure take place.
I passed some examinations and failed others, but I had shown the school.
One of the girls found out I had passed some of them and accused me of
cheating because my mother was the invigilator. She spread malicious rumours
around the school. I felt that I couldn't win. If I passed I was a cheat,
if I failed I was dumb. I was very hurt. My mother was furious and told
the girl's parents what she had said, and she was made to apologise to
I had seizures or was it all
part of growing up? I began to think the world owed me a favour, I reached
fifteen and got so upset that I tried to take my own life by taking an
overdose of the anti-convulsants that were prescribed to reduce seizures.
I was found by my mother who rushed me to hospital. Later, I remember
opening my eyes and seeing a nurse standing there. She said: "You've had
your stomach pumped out. You'll be all right after a sleep, then if you
don't mind can you hurry up and vacate the bed, - so we can give it to
someone who wants to live". Where was the sympathy I had expected? It
finally hit home, and I thought: "I don't want to die, I enjoy living
too much." The nurse was in her own way just telling me to get on with
my life, and I have done so, despite the few bad moments that we all have.
I realised at this point my life would have to be far more laid back and
relaxed in style, if I was going to cope. Instead of sailing I took on
the role of Race-Officer which meant I would start and finish the races
for the yachts from the shore with a klaxon horn- This I enjoyed.
Before giving up work to start
a family, I applied for five jobs and I am proud to say that I was successful
every time. My idea was not to walk into an interview room and say "I
have epilepsy". Instead I said "Good morning my name is Julie, I suffer
with epilepsy", and then I described what work I could do. If you are
faced with this problem, let the potential employer know the things you
can do rather than the things you can't. Go into the interview room and
sell yourself. Never under any circumstances hide from your future employer
that you have epilepsy. It is easier to sack you for withholding this
fact than for having a seizure in the workplace. If you can think positive
thoughts as you go in for your interview this will help enormously. Do
not think "if I get the job" but "when I get the job." Always remember
an employer and colleagues have the right to know if you have a problem.
They are the ones who will help you after all, if you have a seizure.
By following this practice, I realised not all people are prejudiced against
those with epilepsy, especially in the working world.
I decided to speak to others
to see if I could find out the general public's feeling towards epilepsy.
In my home town of Welwyn Garden City, I asked twenty-five people in shops,
in the streets and parks to see what their views were. The information
I came back with was quite revealing. Most people said they were afraid
of epilepsy. Later, I wondered whether this was because of the condition,
or simply because they didn't know what to do to help. If someone had
a heart attack in front of them, it would be reasonable to panic and be
afraid because they wouldn't know what to do for the best. There were
people I tried to question who wanted nothing to do with me. When I explained
I had epilepsy, some were positively rude. Most of these seemed to be
those over the age of sixty. They would look me up and down when I told
them I had epilepsy. When I told them it was not controlled properly they
did not seem happy at all, and couldn't wait to get away. Most seemed
to be very wary and unsure, but this was less so with younger people.
Coming to after a seizure
is completely different again, and everyone's experience is unique. Typical
for me is to find myself lying on the floor wanting to open my eyes. It
is quite hard work getting them to open fully as they do not want to co-operate
to begin with. Eventually I manage it, and I then try to move my arms
and legs in order to lift them off the ground. I find that they can hardly
move, and a lot of physical strength is required. So I lie there for quite
a while. I need help to get up. My muscles are still flexing and feel
very tender. Sometimes I finish convulsing then lie on the floor, either
fast asleep or semi-conscious.
In order to live with a disability,
the right state of mind is essential. It is important to think positively.
Life can be enjoyed by doing what is possible, whenever it is possible,
and not being constrained by too many self-imposed boundaries. I have
found that setting my sights too low can be worse than overdoing things.
When I first started to do
my talks, I needed something to give them an 'edge'. Something that the
children in the schools could find amusing and therefore realise I was
not a prim and proper 'old' lady. So I came up with the idea of dressing
as a witch. Hundreds of years ago, people with epilepsy were thought to
be possessed by evil spirits and would be burnt at the stake as witches.
I was very nervous the first time I tried this, not knowing quite what
the children would think. I entered the hall wearing a cloak, a witch's
hat over a black wig, and carrying a broomstick and cauldron. I was quoting
from Macbeth: "when shall we three meet again. In thunder, lighting, or
in rain?" They all looked dumbfounded. The atmosphere was electric. Their
faces where full of expectation and delight. They started to giggle and
challenged me, saying: "it's not Halloween miss" and "do you fly, too".
All sorts of comments came out. It was marvellous. My fears had been totally
unfounded. Their laughter, merriment and enjoyment was second to none.
I found they listened far more attentively and actually took an interest
in what I was saying. I explained how witches were relevant to epilepsy,
then took the costume off and demonstrated that underneath was a normal
human being, looking no different to anyone else. The whole idea had been
well worth it.
As for drinking, it is not
advisable to take alcoholic drinks whilst on anti-convulsant medication.
But of course, when I was a teenager I did not listen to such good advice.
I wanted to be the same as anybody else, so I just carried on. As a rule,
drink and medicine do not mix and I was either violently sick or else
felt as though I was on the ceiling. In my teenage years I drunk too much,
and did it simply to prove that I could. As I got older the effects would
become obvious. Sometimes I would go to a party and have just three glasses
of wine, but then I would have to be taken home.
22/9/87: My back is still aching
from the seizure I threw the other day, but I was determined to get my
washing dry. The only sound I could hear was the noise of lawnmowers,
everyone getting their last cut in before autumn raised its ugly head.
Except for me that is. The lawnmower is another thing I am forbidden to
touch - just in case I have a blackout and put my fingers into the rotating
blades. I sighed deeply to myself, promptly followed by a childish giggle.
At least I can't be blamed if the grass gets too long, I thought! Then
I suddenly felt strange. The only way to describe it is that I didn't
feel united with my body. Every breath I tried to draw seemed unable to
enter me - a very weird sensation. Then the world seemed to fade away
completely and that was the last thing I can remember. The morning became
an entire blank.
Fortunately, the 20th century
has seen major developments in epilepsy control. Many drugs have been
produced for epilepsy over the past hundred years. There are at least
fifteen other drugs in common usage. Phenobarbitone was first introduced
in 1912, whereas Topiramate was only introduced in 1995. A great deal
of research is still being carried out in the field of epilepsy and new
medications are becoming available all the time. Since the 1990s, there
has been a new drug available every couple of years. Because of this,
the majority of people with epilepsy can easily be treated.
I tried acupuncture for a
while but did not find it effective. This is a very old treatment that
uses needles which are inserted into the flesh for a period ranging from
a few seconds to thirty minutes. In a 1999 Norwegian study, 29 epilepsy
sufferers were treated with acupuncture. The group was split into two;
fifteen had acupuncture and the remaining fourteen had a sham acupuncture.
This was to see whether acupuncture was indeed a viable help to the condition.
There was seizure reduction in both groups, but it did not reach a statistical
significance. The test was unable to prove a beneficial effect in epilepsy.
Acupuncture may, however, be effective in reducing stress and anxiety,
which may be helpful for epilepsy sufferers.
Whilst visiting Milton Keynes
I had a tonic clonic seizure. A short time later, I had recovered enough
to get into the car, but I decided that I wanted the toilet. My husband
told me to wait for a few minutes, as he could see I was in no fit state
to do anything. I must explain here that when I have just come out of
a large seizure I tend to be very self-willed and argumentative. I was
determined to go to the toilet so we stopped at the nearest public convenience.
I went inside, shunning all offers of assistance. I looked at all the
strange shaped basins on the wall, but did not think anymore about it.
I went to the toilet and on emerging from the cubicle I saw several men
standing there. I challenged them, suggested that they should have something
better to do with their time, and swore at them in no uncertain terms
to go away. I got back into the car where my family was waiting for me,
and I told my husband about the strangely equipped room and the horrible
men standing inside. My husband explained patiently and as nicely as possible
that I had in fact been in the gentlemen's toilet.
to get the book