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Erika Harding | | Person with diabetes Born in Vienna, Austria in 1931. Diagnosed Type 1 in Reigate, Surrey in 1940
Overview: Erika Harding`s father was Jewish and, in 1939, after the Nazis invaded Austria, she came by boat to England. When she looks at her photo of the thin, hollow-eyed little girl on the boat, she`s sure that she already had diabetes. After diagnosis, she was treated at King`s College Hospital, London, by R.D. Lawrence (co-founder of the British Diabetes Association, now Diabetes UK). She left grammar school at 18 and worked as a medical laboratory scientist until she retired. She and her artist husband have both played in many chamber music ensembles.
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Tell me about your parents
| (1) Tell
me about your parents.
Well, I was born in Vienna
in 1931. My mother was born in Prague. My father, I think, was born in Vienna, but he came from a family who came from what was the original
Austro-Hungarian Empire, so my grandfather came from Hungary, and we thought
of ourselves as Austrians by then. I was quite a happy child; I was an only
child. My parents separated when I was about three, I think, and divorced,
I don‘t know, some years later. We left Vienna
because my father‘s family were of Jewish origin, not terribly religious or
anything, but Hitler classified them as Jews, and one wasn‘t allowed to do
this, that and the other. And there were some very nasty moments about the
first year that I was at school. We were turned out of our flat by some,
I think they were thugs, I don‘t think they were official people, who threatened
my mother with a truncheon. Our maid, everyone had a maid those days, our
maid got between her and the men, but we were turned out of our flat without
clothes or anything; went to live with my great grandmother, I think. And
during that time, the maid broke into one of the cupboards, brought some clothes
of mine which were available there, and pretended she‘d had a burglary. So
there were some nice people around as well. But my step-grandfather - this
is complicated - my mother‘s mother got divorced too and married a second
time, and the man in my life was my step-grandfather - and he left Vienna
around about that time to go to Czechoslovakia,
which had not been invaded by the Nazis at that point, to make arrangements
for us to go to America.
But he wasn‘t Jewish.
I‘m not terribly sure about this,
quite honestly. The family name was Lustig, and that might well be a sort
of central European Jewish name, but I haven‘t a clue. But anyway, there
was no problem about that, you know, he just went to Czechoslovakia, he made arrangements, I don‘t know
what, and he got on an aeroplane, and it crashed over the Black Forest and everyone was killed. So, my mother, I don‘t know what
she did or what she arranged, but I think a great aunt of mine paid a Swiss
to travel out of Austria
with us, because it seemed safer that we should go with somebody as neutral
as that. So, two or three days after my eighth birthday we left Vienna, waved
goodbye to my father‘s parents, my grandparents, never to see them again.
And we were aiming for, don’t laugh, Monaco, I can‘t think why, but anyway, we were.
In Switzerland, this
| (2)
Swiss gentleman turned out not to be quite such a gentleman - he made off
with my mother‘s possessions. When she went to the Swiss police and they
went to interview him, he said "if you take this any further I will report
your remaining relations in Austria to the Nazis". So mother lost her
typewriter, a very good picture and a few other odds and ends, I don‘t know.
And we were in Switzerland
with a two day visa to pass through into France, but there was an epidemic of ‘flu at the
time, and we both went down with it. And I really don‘t remember this at
all, I mean my mother told me this, but we were stuck, no visa, couldn‘t get
out of Switzerland. I don‘t
know what we lived on, but we moved to Neuchâtel in the French-speaking part
of Switzerland, where I learnt to speak French and
play with the other children. I have now forgotten most of my French, and
I now go to French conversation classes to keep my mind active. But at the
time, we spent five months in Neuchâtel, and eventually, because mother had
friends in England, and
she‘d been to England -
I had photographs of her playing tennis in Ealing with her friends - we came
to England,
and she had a work permit to do domestic work. Strangely enough, the people
who employed her were a history professor, Professor Ormerod, from Oxford
and his wife who lived at Tubney, quite near to where I‘m living now! And
we were there for a little while. Mrs Ormerod was very nice to me, very sweet;
lent me a tent to play in, gave me English books to read, which I was finding
quite difficult but, well I suppose it started me off on the language. And
the only thing I really remember from then is a policeman coming, the local
bobby, and I suppose he was checking up on this foreigner - I think by then
one knew there was going to be a war. And he came to the door and he asked
for my mummy, and I burst into tears and ran screaming away because I thought
he‘d come to collect her, because he was, you know, authorities, Nazis, all
the rest of it. And he was terribly upset, poor man, "I didn‘t do anything
to the little girl", he said. But, anyway, we were there for a few months.
Used to go walking in Tubney Woods, came to Appleton,
where I am now, and had tea here. I wish I could remember which house or
where, but I can‘t. All I know is that mother offered to pay, and they said
"oh, after your history, we just wouldn‘t let you pay". Very charming,
but I have no idea who it was.
How did you get from Switzerland
to England?
By train. We went to Calais. I don‘t remember
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journey at all really, except approaching the white cliffs of Dover, which
were pointed out to me, and travelling by train from Dover to London, and
mother pointing out the sheep, because in Austria you saw goats but you didn‘t
see sheep.
You mentioned that your mother‘s
possessions were stolen. Would she have had many possessions? Were you from
a well-to-do family?
I think we were reasonably well-off,
yes. There had been - when was it - in 1928 a big crash, and a lot of people
lost their money. But my father‘s parents were jewellers, and she used to
help occasionally. They didn‘t trust my father, he was dishonest with money
and he was a gambler, but they let my mother work! So yes, I think we were
reasonably well-off, not rich, but reasonably well-off. My great aunt sent
a lot of the furniture that we‘d had on to us, and mother always cursed because
she didn‘t include the beds, and they were rather good! But for a long time
I lived with the paintings that had belonged to her, so wherever we lived
in England,
and we moved around a lot, we had her paintings. They don‘t fit into my home
now, and I‘ve got a husband who paints and does artwork, so when mother died
we sold the few remaining ones, which she‘d sold most of them to make money
to go into a nursing home. But, I suppose, you know, life was fairly comfortable
in Vienna certainly; not once we came to England.
So how uncomfortable was life
when you came to England?
I think we were strangers. I
didn’t speak perfect English, and mother - she spoke English with an American
accent mixed with a sort of a German-ish accent, you know, it was hilarious.
But, the fact that she had to do domestic work meant that I couldn‘t live
with her. And the other half of the story is that my father came to England,
via some route I don‘t know, on which he met his second wife, and when they
reached Surrey, they were put into a refugee hostel - there was a huge house
called The Rock where a lot of refugees stayed - and they found they couldn‘t
share a room. It was snobby Surrey and, you know, 1939,
so they got married so that they could share a room! And because mother was
working as a domestic, as a maid, in black frock and little white cap, which
she resented bitterly, I was living with my father and his wife. I think
they did their best, and they knew absolutely nothing about children, so when
I was beginning to be a bit ill, they thought I was being naughty. And this
went on for a while. Eventually the British authorities decided that all
these ‘enemy aliens‘
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to be moved to the Isle of Man. So mother gave up her domestic chores etc,
her work, and she came and lived in the hostel with me. And I don‘t think
she realised that I was ill at the time, you know. Life was different, you
know; one was afraid of what was going to happen. The war had started. We
used to go out into the gardens when there was an air raid; what that would
have done for us if they‘d dropped bombs I do not know. Anyway, she didn‘t
notice at first. And I was invited to a children‘s party, so off I went,
and I came home "mummy, mummy, it was a lovely party, and guess what,
I drank twenty-four glasses of milk!". And I think at that point something
clicked! My mother came from a medical family, you know, and she thought
"there‘s something wrong with this child". What baffles me to this
day is how any woman at the beginning of the war, or anywhere, however rich
she was, had enough milk in the house to give one small child twenty four
glasses. Just try and work that out. Anyway, she made an appointment with
the local doctor, and I was whisked into the East Surrey Hospital
in Redhill straight away, and went into a coma that night. They just caught
me I think. And I was in there for some time, and the blitz started. The
aeroplanes were overhead, you know, the sirens went, and we were taken down
into the cellars I suppose. They started me on insulin very quickly. And
one hears of children who don‘t accept their diabetes, and I can remember
about my third injection weeping and saying "I don‘t have to have this
thing again do I?". And a very sensible nurse said to me "well
dear, I‘m afraid you will for the rest of your life", and I said "oh,
all right", and that was it, you know, which makes me wonder about my
sort of mental make-up, but there we were. Anyway, things seemed to go reasonably
all right from then. I had boils on my back, which the nurses didn‘t notice
and mum did when she came to see me, so she made a bit of a fuss. But then
I went back to the private school, which had taken me in voluntarily, and
taught me to speak good English, but failed to teach me good arithmetic, and
that bugged me for years afterwards!
A little bit more about the time
in hospital. Any idea how long you were in there?
I think it was two or three weeks.
We were up on the second floor. And I was incredibly bored, and I used to
look out of the window at the people passing below, and wander around, and
look at the odd books that people had brought me. And one day, I leant out
of the window and there was a brick, and I pushed it, and I nearly killed
somebody I think.
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And I was interviewed, you know: this naughty child, what had I done, pushing
a brick out of the window. And of course, I‘d no idea at all. I think I
was, yes, I would have been just nine.
Were you supposed to stay in
bed all the time?
No, no I wasn‘t - I wandered
around, there was nothing like that. But I was put onto the Lawrence Line
diet, which they started me off on in hospital, and my mother was given written
instructions, and I was on this for some time. Now what is interesting is,
of course, that you measure not only your carbohydrates, which are the things
that you sort of have to worry about most, but also your proteins. I don‘t
remember measuring fats; I think it was just proteins on one side, carbohydrates
on the other. And because there was a war on and there was rationing, the
government in its wisdom decided that diabetics would get different allowances.
So, I didn‘t get a sugar ration as such, but I was allowed, I think it was
a pound of cubed sugar a year, in case my blood sugar dropped and I had an
insulin reaction, and, you know, that was supposed to cope. And for years
I went round with lumps of sugar in my pockets, and mother saying "have
you got your sugar on you?" every time I went out, and this stuff crumbling
away in my pocket. Thank god for glucose tablets! The other part of the
diet that I find interesting now was that I had to drink a pint of milk a
day, and even from the age of nine I was querying why does a diabetic have
to drink a pint of milk when other children don‘t. I had a triple ration
of meat and a triple ration of cheese. Knowing what we know now about cholesterols,
I think this must have been a dreadful calamity for an awful lot of people
including me, but there it was. And that sort of culture stayed with us,
because when I started work at the age of nineteen, I was still having bacon
breakfasts, a cheese sandwich to eat in the middle of the day with my morning
coffee and so on. It‘s taken a long time to get away from that.
Can you remember how you measured
the protein and the carbohydrate?
Oh, indeed I can, very well.
Mother bought a pair of scales, paper scales, and everything was weighed on
that. At the age of about twelve, I went on my first Girl Guide camp. I
was a delighted Girl Guide, and I became a Queen‘s Guide and all that, you
know. But anyway, first camp, and I took the scales with me, and they went
into the bottom of my kitbag and there they stayed. I never got them out,
I came home in perfect health, and I learnt lesson number one. The Guides
also taught me lesson number two. I must have been fifteen, and I represented
the district at the first international Girl Guide
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rally in London. We slept in Camden Town shelters at night! It was cheap,
I suppose. And for lunch we were given some packet of food to eat: sandwiches,
cake, fruit - I don‘t know, I can‘t remember - and being dutiful I swapped
my piece of cake with another girl‘s sandwich, so I had two sandwiches and
she had two pieces of cake. Come day two, I couldn‘t find anybody interested
in swapping, so I had a sandwich and a piece of cake, and I lived. So I learnt
lesson number two! And gradually, over my teenage years, I moved away from
the diet. It was still considered sinful to eat sugar, I mean diabetics just
didn‘t, you know, but this diabetic did a bit. And, I mean, I was energetic;
I swam, I played a bit of tennis, I loved country dancing. I think I needed
this sugar and these carbohydrates very badly. When I first became diabetic,
nobody had instructed my mother about low blood sugars, and becoming hypoglycaemic
was unknown to her, which I think is appalling. Because at the age of nine
I was learning to do handstands, and I used to go to bed, top floor of the
house we were in, and I used to practice handstands up against the wardrobe
- became very good at them. And mother used to find me lying underneath her
bed banging my head on the floor because I was hypoglycaemic, and it was only
when she asked about this that she was told what it was all about.
So you did no testing of sugars
in the hospital at all?
Well, I didn‘t. One tested one‘s
urine in test tubes, and the Benedict‘s solution always leapt out of the top.
Oh, it was awful, it really was. And over the years I became very reluctant
to test my urine, because I think I realised that it was testing what had
happened two or three hours earlier and not what was happening now. And although
they improved the system, and eventually you got little tablets that you dropped
into a little test tube that just fizzed within the test tube, I must admit
that during my teenage years I was a very, very reluctant tester. And over
all the changes of insulin and everything else, somehow I…, I suppose I was
healthy, and I coped, and I didn‘t really get interested in finding out what
was going on till we were able to do blood sugars at home.
Just back to the hospital, can
you remember how you were taught to do injections?
I can‘t remember. What I do
remember is that my mother was taught and she gave them to me, and one day
there was an air raid and she was the other side of town, and there was big
panic because the child needed its injection,
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and by the time she reached me an hour or two later, I‘d done it! I think
there was a retired doctor in the hostel or something, and he came along and
he said, you know, "come along Erika, let‘s do this", and so I did
it. And after that I did most of my injections myself, and I prefer it that
way. My husband was taught to do them when I got married; I doubt that he‘d
be very happy doing one now. And when I broke my arm two and a half years
ago and it was my right arm, I got so fed up with the nurses not doing it
at a sensible time, you know, either too early and having to wait for hours
for a meal, or after the meal, that I learnt to do it with my left hand.
So, you know, I think I‘ve been injecting myself since the age of ten, quite
normally.
And no instruction at all about
how to recognise the symptoms of hypos, and certainly not a deliberate hypo?
No, definitely not. You know,
blue Benedict‘s solution tests were good, no sugar there, so that was great
- you were fit, and orange ones were bad, you know, and “what have you been
doing”? Feelings of guilt too, you know, "have you been eating sugar"
and all that, and I did. My mother was quite ill at one point and I went
to live with, actually our GP, who had become a very good friend of hers,
Auntie Bobby. And I used to pinch all the cakes and things that they baked
and tucked away in the cupboard and so on, and for a long time they didn‘t
realise, but eventually they did and it all came out into the open. And to
give my mother her due, she was not very excited about this. She said “well”,
you know, “she‘s a teenager, she‘s hungry”, and I suppose, you know, after
that it all just sort of fizzled over, I don‘t know.
We‘ll come to your teens in a
minute, but just talk about coming out of hospital. Can you remember how
you coped when you came out?
I don‘t remember that it was
a case of coping. Because when this happened, my mother was also quite friendly
with a mayor and mayoress of Reigate, and they were trying
to set up a hostel for evacuees who could not be billeted with ordinary homes
because they‘d got something wrong with them too. And mother had done nursery
work and she was invited to take over this hostel, and she became the matron
and maid of all work, and so on. And I lived there with all these children,
who had mild forms of epilepsy, other diabetics, all sorts, and I wasn‘t different,
so that, you know, it all fitted in, and my diet and everything was accepted.
What I do remember is at the private school, where I went just before I was
diagnosed - children can be beastly can‘t they - two girls coming up and sniffing
me and saying "ooh, you do smell horrible", and
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know, teasing me about it. And I expect I did; I think I was probably ketosed.
But afterwards, after I was diagnosed and put on insulin, and I think it was
twice daily, the only insulin that was available in 1940 - it was only, what,
eleven years since it had been discovered, wasn‘t it - I was okay, you know,
and diabetes wasn‘t a big issue.
If they were sniffing you and
you went straight into a coma, it sounds as though you‘d perhaps been ill
for quite a while before you were diagnosed.
I‘m sure I had been, because
I started getting thirsty, well as you can see, twenty-four glasses of milk!
I was forever going to the loo and asking to be excused at school, and my
feelings about the teachers were according to whether they made a fuss about
this, or whether they said "yes, all right Erika". And that leaves
you with a bit of a hang-up about going to the loo for a good many years,
you know. And it took me a while to get over that one. I‘m sure that I was
already ill when I left main Europe and came across, because there‘s a photograph
of me on the boat crossing on which I look sea sick, but I can remember perfectly
well I was not sea sick, I quite enjoyed the journey, but I was quite, quite
obviously becoming sick then. I seemed to have bigger black rings under my
eyes than I normally do, and I look a bit skinny and a bit miserable, and
I‘m sure that that was round about the time that I began to be ill. People
put it down to the virus that we caught in Switzerland for a long time;
I think that‘s been discounted now, but I’m not sure.
And we haven‘t said the year
of your diagnosis.
I was finally diagnosed a year
after we came to England in 1940, which was round about the blitz time - I
can remember the aeroplanes over head and watching them, and the fact that
we had to go into the air raid shelters when I was in hospital too.
What memories do you have at
your private school immediately after you were diagnosed?
Well I quite enjoyed my private
school days. I used to go home for lunch, because home was just down the
road from the school fortunately, so the question of diet didn‘t really crop
up there. I think we had milk in the middle of the morning; all children
seemed to at that time. I was reasonably athletic - I got first prize for
high jump at that point. I enjoyed the small percussion orchestra that was
going. I was dreadfully upset in my last year at private school when we no
longer had percussion orchestra, because I must, even at that stage, have
had quite an interest in music. But as I say, the diabetes was not to the
fore.
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What happened after you left the private school?
Well, I went to a grammar school,
and strangely enough my mother was persuaded to send me to school that had
been evacuated to Reigate from South East London, from
Honour Oak. I don‘t know why - there was a perfectly good grammar school
in Reigate, which I didn‘t actually attend until my sixth
form years. But I went there, and I was surrounded by children who were losing
their homes, something I didn‘t really understand too well. But we had sewing
lessons, which I hated; I‘ve never liked anything to do with a needle very
much, needlework just isn‘t me. And they used to be sewing curtains or clothes
for themselves and things like that, because they‘d lost everything. I think
it was a good school, from the point of view of teaching you reasonable English
history. I did complain a bit, because we‘d done the old stone men at my
private school and we were doing it again, and I wanted to move on in history,
but, you know, they taught us well. I did French with a wonderful teacher,
who once a week gave us French singing lessons, so we learnt to speak French
without thinking about the grammar, which was, I think, exceptional in those
days. I was never much good at maths, but as I took up a science subject
eventually I had to come to grips with it, and had private lessons from one
of the teachers at the school who felt that it was worthwhile making the effort.
But after, I think it was two years at that school, my mother moved to run
another hostel in Croydon, which was quite a dangerous place to be, because
the doodlebugs and the other flying bombs arrived there. And I went to what
was called Selhurst Grammar School, which nowadays is no longer, and that was a school
I really, really enjoyed. We used to have clubs; people came to talk to us
in the lunch hour about other topics. I can remember, what are they called,
the people who first reintroduced recorders to the country, and being fascinated
by this and thinking I‘d love to do this sort of thing. I was never very
sporty, but I was good at gym. We used to march in and out of prayers in
the morning, with one of the girls who played the piano playing a march for
us, and I gather my class always marched in time, and I think I must have
helped them because I was pretty good at this! But, I took my school certificate
with
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matriculation exemption at that school, and did pretty well. The results
came through at guide camp, as ever - I always went to guide camp. We were
in Hertfordshire at the time, and my result came through first, much to everybody
else’s disgust! But anyway, I was happy. I‘d got, I don‘t know, five credits
and three very goods and all that, and I was going on into the sixth form.
But by the time that happened, my mother had moved back to the Reigate Redhill
area, and I had to travel to school in Croydon by train. And that I found
very trying, and I was sick and ill on the train on several occasions. I
don‘t know whether this was psychological or just what it was, but anyway,
it was decided in the sixth form I would go to Reigate
Grammar School. So I took my, they‘d be A Levels now would they, I
don‘t know, Higher School Certificate in Biology, which included Zoology and
Botany; it was a huge subject. I did pure maths, physics and chemistry, and
I found it quite hard going. I wasn‘t terribly fit during that time, I don‘t
know, I had lots of little things wrong with me. I don‘t think it was straight
forwardly due to the diabetes, but I had to work very, very hard. And I passed
my two worst subjects, because I suppose I‘d worked so hard at them, and failed
my two better ones, which were biology and chemistry. So I stayed on at school
for a third year, split the biology into botany and zoology, which made everything
much clearer and much easier, and took the chemistry again, and started to
apply for universities. And I would have had to have had a scholarship -
there was no money available. Something tells me that I was a bit ambivalent
about that, because I knew that going to university meant deserting, as I
felt it, my mother. She was on her own. She‘d met a man whom she was going
to marry during the war, and he was an interesting chap, spoke seven European
languages, and he was killed. He did intelligence work and we don‘t know
how he disappeared, so she was very much on her own and very much dependent
on me, and I
always felt responsible. And
I suppose that may have been partly the reason that I didn‘t perhaps work
quite as hard as I might have done at my subjects, I don‘t know. I went for
interviews to London universities.
I never applied to anywhere outside London,
because by then we were living in London
and I felt I had to be around, but the money didn‘t come through, so I settled
for a job where I could go on learning, and it was going to be a scientific
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And with the wisdom of hindsight and my years now, I‘d say in my next life
I‘m not doing anything scientific or medical!
Well, we‘ll come on to that.
Let‘s just look back over your teens. How did you manage your diabetes in
your teens?
I think I just carried on, quite
frankly; I don‘t think it was a case of managing. School meals - yes, certainly
at Reigate Grammar I stayed for school meals, and being a prefect I sat at
the head of table and watched everybody else’s behaviour, and I‘m not aware
of having eaten anything different from the rest. Did I miss out the puddings?
I really can‘t remember. Once again, it wasn‘t something that I felt was
terribly important.
Were you quite a self-disciplined
teenager?
Yes, I think so. I never missed
my injections, I was never tempted to be terribly naughty about things - by
then I‘d got over the pinching of things. Yes, I suppose I was. I think
the very fact that I had to start off with regular injections at a very early
aged left me less, how can I put it, spontaneous than I might have been otherwise.
Over the years, nurses in hospital used to ask me how diabetes had affected
my life and were always very surprised when I gave that as a reply, but I‘m
sure it‘s true.
What kind of things would it
have stopped you doing then?
The sort of things where people
said "ah, let‘s go out for the evening", and nobody decided that
we were going to eat anything or stop anywhere to eat. Things like that.
How did your teachers and fellow
pupils react to your diabetes?
I don‘t think my fellow pupils
were terribly much aware of it. I think children are somewhat inward looking
at that age. The teachers knew, they‘d been told. I rather doubt that any
of them had been instructed in what to do about me; I think they just knew
that I was diabetic. I remember that there was another girl in my class for
a short time who was also diabetic, who, when she became hypoglycaemic, used
to attack the teachers, much to my amazement, because it never took me that
way. I used to know when I was becoming hypoglycaemic, and I don‘t think
it happened all that often anyway, so it wasn‘t an issue.
And how did your mother react
to your diabetes?
Well, her first reaction was
"oh god, I‘m going to lose this child, she‘s going to die", because
in 1939 people did think like that, and she was in a great panic. I think
she was very good about the things that she‘d been taught to do for me - the
food, the insulin, you know, that sort of thing. And she was sensible, because
when she was invited to send me on a diabetic children’s holiday, and I said
"no, I‘m not going on a holiday with kids with whom I‘ve got nothing
in common but diabetes", she accepted that quite happily. People say
she was very brave to let me go to Guide camp. Perhaps she was - I didn‘t
think so at the time; my Guide captain was quite good about it. And I think…,
I had problems with my mother, but I don‘t think they were related to diabetes.
I think they were related to her neurotic state, her miserable childhood,
and various other factors that don‘t come into this.
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Talk now more about what happened after you left school.
Well, since I wasn‘t given a
scholarship to go to university, I decided to become a laboratory technician
as they were then, laboratory scientists now - the name changes, the job doesn‘t.
And I applied to the East Surrey Hospital in Redhill, near where I was
living, for the job, and they refused me on the grounds that they didn‘t think
I could cope because I was diabetic. After about twenty-four hours of thinking
about this, I realised that I didn‘t think that that was the reason they had
refused me. They refused me because I had an adopted aunt, as we called her,
who was a prominent GP in the area, and if this lass turned out to be no good
at the job, they couldn‘t very well sack her because of Doctor Muir! However,
it did me a good turn because I wrote to King‘s College Hospital, where I‘d been attending
the diabetic clinic. I explained the situation, I went up - it wasn‘t an
interview, I discovered afterwards it was the principal consultant‘s secretary
who saw me; I think she was a lady who took a lot on herself. Anyway, I was
accepted and I went up to work at King‘s. I had to travel up by train every
day, and it was quite a long trip again. But we got to know each other on
the train, other people, and there was a girl learning to be a physiotherapist
with whom I went, there was a bloke who was at dental school at King‘s, so,
you know, the journey was reasonable. But it was a very, very long day, especially
as I had to go to evening classes in London twice a week, and I‘d come home
in the ladies‘ carriage at 11 o‘clock at night, so that was not easy.
You mentioned that you‘d been
attending the clinic at King‘s - how long and how often?
Ever since I started diabetes
really, after I‘d been diagnosed. I don‘t think I went back to the East Surrey Hospital;
somebody must have said or suggested that King‘s was the place, and it certainly
was. I mean, it was a leading place for diabetes in those days. It was where
the well known RD Lawrence, who was a diabetic himself, worked. I was seen
by Lawrence. When I went to work there, I remember opening doors for
him and things like that when he was about the place. And no, I think I was
there from the age of ten onwards.
How often do you think you went?
I‘m trying very hard to remember.
All I can remember is being in there when I had my appendix out, and being
in the diabetic ward and how that was run.
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| | (13) How
old were you then?
Oh, by then I was seventeen,
eighteen - something like that.
And how was the diabetic ward
run?
I think it was a very well run
ward. There was still this terrific emphasis on food and what you ate. And
meals would come in, and the sister in charge dealt each meal out to each
individual diabetic on the ward. We were in little rooms of, I think four
in each room, and I think everything went very, very smoothly indeed. There
were one or two horrifically sick people in that ward, but I saw those, not
at that time, but later, when I was already working at King‘s.
When you look back on Lawrence’s
regime and the care you received, what are your impressions now?
I think I received as much care
as was available at the time. They looked at things very differently, but
I was a little bit, quite early on, amazed at the fact that they could make
decisions about my treatment on the strength of a blood sugar taken the day
I went to the clinic.
How did they test your blood
sugar then?
They took the blood from me,
and it was quite a long process. I did learn to do it eventually when I started
work, but I can‘t honestly remember. But I do remember special test tubes
that it was done in, because the reaction had to take place in the presence
of as little oxygen as possible, and there was a narrow neck in the test tube,
below which the reactions took place and the changes of colour and everything.
But nobody took your blood sugar a few weeks before. I mean, it was there
at the clinic, and you sat around and you waited, and then you saw somebody
and decisions were made.
Were you consulted about the
decisions?
I don‘t know that consult is
quite the right word. I wouldn‘t have expected to have been consulted, not
in my teens; a late developer this one. I was told what was decided, and
I accepted it, I think.
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you‘d started work at King‘s College
Hospital, can you talk about how you managed your
diabetes?
Well, I don‘t think it was too
difficult. At some time round about that period I was put onto a long-lasting
insulin, which I had to take once a day. Once again, with the wisdom of hindsight,
I think this was a bad move, because it meant one really had to eat sensible
amounts at equal times during the day, equally spaced times. And I thought
I‘d been given this wonderful freedom – no injection at night, hoorah. And
I think, you know, really and truly, that my problems with arteries, the fact
that somebody did once see that there was a bit of retinopathy round the edges
of my eyes, though touchwood nothing further has happened, I think all that
must have started round about that time, because I must have been horribly
unbalanced. But as far as work was concerned, I loved it. I was an eager
beaver, I wanted to learn about things, I was always asking questions. And
I started off in the haematology laboratory, where patients came and had their
blood taken from veins in their arms, and the few doctors in the laboratory
used to go and take the blood. And eventually, Erika decided that really
I could do this too, and begged to be allowed to do this, and was taught to
do it. Thereafter, the rest of the technicians in the department also learnt
how to take blood, and we went on doing this for a long time. And it was
good fun, because you talked to the patients, you found out about them. You
learnt that ladies over the age of sixty always complained of being tired
and always had their haemoglobin tested. And along the way I took exams,
and I think I‘ve only once in my life actually failed an exam; I‘m a good
examinee - I manage to reproduce what I have been taught. This doesn‘t make
me creative or original, which my husband is, but it was quite useful, because
one moved up the scale as one passed one’s exams. And we moved around: I
moved from haematology to bacteriology to biochemistry. I had to do a spate
in the animal house, which I positively hated; not because I felt we were
being cruel to the poor little animals, but because the smell of rats and
things stuck to me. And I was beginning to be interested in going out with
medical students who were around, and the thought of going out with somebody
and smelling of rats, you know, it wasn‘t on! But then I managed to drop
a box of mice and got the sexes mixed up, and after that they decided that
I really wasn‘t meant to be working in an animal house, and I was full time
in biochemistry for about three months, and what was the other subject, oh
- histology. I didn‘t learn much histology. It was my job to go round to
the operating theatres and collect the specimens in their formalin jars, and
I never really did come to grips with that side of laboratory work. I eventually
decided to do my final exam in haematology, because that involved patients
and going round the wards, and being there when they had bone marrow biopsies
taken. I begged to be allowed to do that too, but quite rightly that was
refused; I don‘t think insurance would have covered me if I‘d killed somebody.
But it was interesting. And I got my haematology finals - I took the practical
at the London hospital in Whitechapel.
And after that - now let me think, yes - we were living in London, but the other side of London, and I decided to change.
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After I‘d been at King‘s for about five or six years, I decided that because
we lived the other side of London,
I really needed to work somewhere closer, and I found myself a job at the
Hammersmith Hospital, which was very well known. And I thought this would be okay.
I was miserable there, it was a terrible place to work - we were overworked
- and eventually I was lumbered with somebody else’s mistake and asked to
resign - I wasn‘t sacked, I was asked to resign. And I looked round for other
jobs, and I went for interviews, and eventually found myself at this small
Ealing hospital, as it was then; I mean it has moved now, it’s a huge hospital.
But I worked in the laboratories there for years, and nobody had any complaints
- I don’t think I killed anybody. But what they did have was someone who
suddenly left their bacteriology department, and they asked me if I‘d like
to take over, so I did, and I went to evening classes for one year. It‘s
a two year course but they did a concentrated course, so I did that. And
I took my finals in bacteriology, passed, got my fellowship, and went on working
in the bacteriology lab for years and years and years. I became a senior
technician, as they were called then. And at some point during that time
I met my husband, who is an artist and a designer and very musical, and not
scientifically inclined at all. But we went around together for about seven
years, and he was working in a studio in the area. And he hated London, and when we finally got married, I realised
that the time had come to move out of London.
What year was this?
That would have been ‘68, ‘69.
We didn‘t manage it immediately, but I applied for jobs all over the place.
And we aimed for Gloucestershire, he liked Gloucestershire very much, but
although I had a lovely interview in Gloucester with a very, very charming consultant,
they didn‘t have a vacancy. But they wrote to me, and they wrote me a very
apologetic letter, which is nothing I‘ve ever had from anywhere else I‘ve
been on an interview. But what happened was that my boss in London had been
on a conference to Dublin where he met one of the consultants from Oxford,
and on the way back in the aeroplane he said "my chief technician is
looking for a job in your area", and the consultant here said "oh
I expect we can find her something", and to cut a long story short, I
came to Oxford. I had the strangest series of interviews I have ever had
anywhere, and by then I‘d been on a management course,
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so I was quite critical. And I got a job in bacteriology, but not in the
laboratory. I was told that I would be responsible for the venereal diseases
work for the VD clinic. What they didn‘t tell me was that they expected me
to sit in that clinic, the other end of the hospital, all day long and look
down a microscope looking for gonococci and associated diseases. And I was
furious, because I reckoned that if I moved onto another job ever, and they
said to me "oh you‘ve been to that big laboratory in Oxford, what did you do there?", and I said "I looked for
the gonococcus", it wouldn‘t sound very good. So I battled for about
four months, said I wanted to be down in the laboratory, I was not going to
be stuck up there, and I did eventually find my way down to the laboratory.
But what I found interesting was that nobody mentioned the word diabetes to
me, and yet, you know, I don‘t believe they didn‘t know that I was diabetic;
I think it was not put in writing, it was said on the aeroplane. Because
what happened was that I was expected to work in that clinic right through
the lunch hour, after all, that‘s when the patients can come, you know. And
I said to the consultant in the laboratory “I can‘t do that, I‘m sorry. I‘ve
got to have time to have some lunch, I‘m diabetic”. And I was very angry
about this, and I think, after I got to know him better, he had put this to
me in order that I should, you know, sort of make this clear. So I got my
ten minutes, quarter of an hour, and I stretched it. There was a seminar,
a bacteriology seminar, once a week, and I went to it for an hour, and they
were fed up in the clinic because I wasn‘t there to see them make diagnoses
on all these patients. And I was aiming to get other people to come up from
the laboratory, and eventually people did take it in turn, and eventually,
one jolly day, I found myself just in charge of all these people but working
in the laboratory. And that was down at the Radcliffe Infirmary, the old
Infirmary. But after about three years, of course, we moved up to the new
John Radcliffe Hospital, and I was invited, with others by then, to go up
and, you know, say what I wanted in the way of bench space and all that, and
we moved up there. And eventually we got a new consultant, and he freed me
entirely from the VD clinic. I became a member of his staff; good movement,
he was good at money and things, and I felt much happier being part of the
laboratory. By then I wasn‘t a laboratory technician but a laboratory technologist.
We were all still doing the same job! And I was aiming
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to become a chief, because I could see that with a husband who was self-employed,
and artists don’t earn very much, I needed to have a good retirement pension.
And working my way towards becoming a chief was very hard work in a department
where they just weren‘t interested in helping you with it, so it was a struggle.
But at some point, I‘d become very friendly with one of the chiefs, who had
actually interviewed me at the first instance, and he knew his way around
and he told me which personnel officer to go and see. And I went to see this
man and discussed my case with him, and learnt, which I was pleased to find
out, that he was going up to London to discuss these matters two days later,
and I thought "oh good, at least he‘ll remember me". And on the
way out, I looked round, and he‘d got pictures of birds up all round the place,
and I said "oh, are you interested in birds?", and his eyes lit
up, and we spent another ten minutes talking about ornithology, and I got
my chief technician’s move, which was great. But, you know, I was still in
charge of part of the laboratory - there were so many chiefs there, we each
had a bench, as it was called, and the rest of the staff circulated. And
we taught ad infinitum, not just junior staff, but doctors from other countries,
and I learnt to speak very, very slowly for those who did not “speaka-ze-English”.
But some of them were amazing. I always remember the one from Nigeria who trained in Hungary,
and I said "how did you do that? Did they teach you in English?",
and he said "oh no, I spent a year there and we all learnt Hungarian,
and then we went to medical school" - isn‘t it amazing. Anyway, you
know, that was good, that was interesting, and I managed to go away to conferences.
And I became interested in infections due to fungi, and I got myself, with
great difficultly, sent on a week’s course to Leeds, which once again I enjoyed a lot. It was a week away from the
laboratory, and one was terribly shut in there. And Leeds was good. We paired up; I paired up with a pathologist from Wales, and, you know, we worked together very
happily, and he took me out to lunch and things as well, and I learnt a lot
about fungi. And after that, any requests for fungal diagnosis were sent
to me in the laboratory, so that was quite good. And I was a keen amateur
musician, which is another side of me, and I was playing an oboe, and I was
beginning to find that I couldn‘t play it very well – it was becoming more
and more difficult. And people used to say to me "oh Erika, you are
breathless".
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And I tried different oboe reeds and, I don‘t know. Anyway, I had a heart
attack, and then we knew why I was having trouble with playing the oboe!
What year was that?
That was 1984, I must have been
about what, fifty something, mustn’t I. I‘d been finding the work quite hard
going too. I know there were people there who did extra work to earn extra
money. If I did extra time, I took time off, always, and I suppose, you know,
that must have been the reason. I think you might say, that was the heart
attack coming up rather than the diabetes, but the two are linked aren‘t they.
So I had six months away from work, and then I decided I wanted to go back.
I had angina, I had all sorts of things, I felt rotten. Strangely enough
I was sent up to St George’s, Tooting, for another cardiac man to look at
me, because there wasn‘t a cardiac department in Oxford at that time, not
a big one, and it was while I was there, I know we had to walk miles round
this hospital to find the department, the angina suddenly stopped, and I suddenly
felt an awful lot better. And when I got in to the consultant, he looked
at my, this thing, I don‘t know what you call it that I took, this measurement,
and he said “I don‘t know why you‘re not back at work”! So I rang up the
lab, and I said “I‘m coming back to work”, and our South African, then consultant,
said "are you sure you want to come back?", I said "yes".
So it was arranged that I went to see him. And I remember sitting in his
smart office with the then chief technician alongside him, and he said to
me "I don‘t think you ought to come back Erika", and I said "I‘m
not ready to resign, I‘m not ready to give up. I want to go on working, I‘m
interested". "Well, I don‘t think you should, you know, I think
you should take retirement and enjoy what little life you‘ve got left".
And if I ever came near to hitting a man, that was the moment, because I was
also thinking there were other people in that laboratory who might have been
in my place who would have had another heart attack on the spot. It was absolutely
incredible, and the chap who was the chief then, he was a feeble little man,
and sadly he died a year later of very nasty cancer, and I‘m still here.
But anyway, we settled that I was going to return. He wouldn‘t let me do
it part-time - "Either you come back full-time or you retire".
So I said “well”, you know, “can I come back part-time for a week or two?”,
"yes, for two weeks, but then it must be full-time". So this is
what I did, and towards the end of the second week, his new senior chief was
really hassled to come and bother me, you know, "when are you going to
start doing full-time work?". He was a nasty man.
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Anyway, I mean I did, you know. I used to get angina round about 4
o‘clock in the afternoon; I was just so tired. But it worked out all right,
and I did another four years. But what happened in the meantime, and what
had been happening for a long time, was that the arteries in my legs were
starting to get furred up, to use everyday language, and I was getting very
badly infected toes. I‘d been on a lot of antibiotics and my feet were getting
really, really painful. And at one point, I had such a bad infection in my
heel that they decided to debride it. And I came in and I had it debrided,
and I was still to keep my heel off the ground for ages, and I couldn’t go
back to work for that. And I thought, well, I don‘t know, you know, I‘m just
not working well. I‘m in pain all the time, I don‘t know how I‘ve managed
to keep going this long with all this pain, and it wasn‘t the heart, it was
the feet. So I decided, by then we were all right for money at home, and
I decided to retire, so I retired at fifty seven.
Before we get on to your retirement,
we‘ll backtrack a bit, and you mentioned that after you came to Oxford,
nobody at work mentioned diabetes. Had that been true in your previous jobs?
I think it wasn‘t mentioned much,
but they knew, because I‘d had to have medicals in order to get the jobs,
and I don‘t think I had a medical until after I came to Oxford.
And how did they react, your
colleagues, to the fact that you had diabetes?
Oh, it was no big deal. I think
it was just something that Erika had!
And another backtrack. Earlier
on you mentioned that you were interested in medical students. How did they
react to you having diabetes?
The story of the medical students
is quite different. They were interested, but they weren‘t going to get serious
about me, because once they‘d done their stint on the diabetic ward, they
could see what could happen. And I used to go out with the odd medical student,
and one in particular, whom I still remember, he was a very clever chap -
I had a penchant for clever people - he became a great professor at the Middlesex
Hospital eventually! I went out with him for three
weeks, and then he dropped me like a shot, and I don‘t know why; perhaps just
because medical students move on. And he was the one who was instrumental
in getting me started on musical instruments actually. But others would invite
me round for dinner and make a big thing about what was Erika going to eat
and so on. And I think none of them ever felt that they wanted to get serious
about me at all. I don‘t think I was ever a femme fatale at any stage in
my life, but I was reasonable looking, much the same as most of the others,
you know, and quite interested in a lot of topics, but I really think that
the fact that they were going to be doctors, and that they knew that I might
come to a nasty ‘end‘, did put them off.
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Would that be a cause of your relatively late marriage?
I imagine it is partly the cause,
yes. I think mother‘s dependence may well have had a lot to do with it, but
the fact that nobody ever did come up and say "will you marry me?",
yes, I‘m sure it did.
And how did your husband react
when you first met him to your diabetes?
I must tell you, I met my husband
because I answered an advertisement in the musical times, which was looking
for wind players to do chamber music in the west London area. And he was a clarinet player and
I was a clarinet player, and he sat in a corner, and he glowered at me for
the whole of the first evening! But eventually we formed quite an active
chamber music group. He changed from the clarinet, which didn‘t suit him,
to the bassoon. And I played the clarinet for years, until we found in London
that you couldn‘t get oboe players to join the group, and he kept on and on
and on at me, "why don‘t you change to the oboe?". And eventually
I gave in, and I changed to the oboe, which is why I was playing the oboe
eventually when I had a heart attack. As far as David was concerned, I don‘t
think he knew much about diabetes. I mean, he knew I had it, you know, but
I don‘t think it affected him very much. He and a friend of his invited me
to go camping with them one Easter, and I said very firmly “well if you do
that, you know, there‘s to be none of this eating casually - I need regular
meals”, and yes, that was all right. And one day, his friend Alan took me
up a mountain walk, mercifully it was misty and I couldn‘t see how high up
we were, as I have no head for heights. David didn‘t come with us on that
occasion. And we returned to camp at ten
o‘clock at night, when Alan proceeded to cook a proper meal for me! It was
much too late really, but I was all right, you know. And I think, I didn‘t
think much of Alan, didn‘t like him, and David and I discovered we had a lot
in common. We didn‘t want to go climbing up mountains, we were much more
excited about the interesting chapel we found somewhere, the fact that there
were puffins out on the rocks, you know, and we got together. And there was,
of course, the music as well. But we were seven years knowing each other
before we got married.
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Did you think of having children?
I‘ve never been desperately maternal,
but I was given a lot of old wives’ tales in my youth, like "if you have
twins the diabetes will go away", or "diabetics can‘t have children".
And I think I never desperately wanted children, and I ended up marrying a
man who certainly didn‘t want children. David has Meniere’s disease, which
is a complaint, not very well understood, of the ear, but what it does mean
is that high pitched noises are painful. And until I knew this, I used to
think he was being neurotic about not going into restaurants where there was
music and things like that on, but I think having a small screaming baby,
or even an energetic friendly child like the kids next doors makes him shut
the windows and go indoors, and I think, you know, our child would have had
a Victorian father. So no, I decided no, and also I was too old to have a
first child – I think thirty seven is too old. I‘ve known first children
of elderly parents, and so often there are problems, and I didn‘t want to
land anybody with that, so no.
So you didn‘t investigate whether
it would have been safe for you to do so with diabetes?
Well, I did know that I could
have done with difficulty, because at one point in London when I was going
to the clinic at the Hammersmith hospital, it was just before I was getting
married, and I‘d had infected hepatitis picked up in the laboratory – one
didn‘t have the safety precautions then – and the doctor I saw, she asked
me whether I wanted to have children when I got married, and I said "I
don‘t think so". And she said "well, perhaps it‘s just as well.
We would see you through it, and I‘m sure we would succeed, but you would
have to come into hospital for six months". And that, you know, that
decided it; I mean, I wasn‘t going to.
Which year was that, that you
would have to go into hospital for six months?
Oh, when did I get married, 1968.
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Now we‘ll return to the point in time we‘d reached, which is when you took
retirement. Which year was that?
I was fifty seven, fifty seven
and thirty one… - ‘88. My mental arithmetic is not one hundred percent, is
it? I retired because of my feet; I knew I couldn‘t go on standing on those
terribly painful feet for so long. I had had an awful lot of antibiotics
too, you know, and those affected me eventually, and I had a few illnesses
due to that. But anyway, I retired. And I had nurses visiting me every morning
for a long, long time to give me dressings and things. Now any dressings
I need, I do myself, and I go to the podiatry department about every three
weeks, and unless something crops up, which it does occasionally, and I give
them a phone call in between. But at that time, I had a nurse coming to see
me regularly, so I had to be at home until she‘d been. She was a nice woman,
and she tried to make it before ten
o‘clock in the morning so I was free. As I recovered, we were living in Cumnor
at the time, we decided to move because we wanted more space. David had a
huge printing machine in a little shed in the garden. We’ve now got a big
place at the back here, which was part of this house. And we spent a lot
of time going round looking at places. We came back, and I say back, to this
place, which we had seen years before. We‘d been gazumped and couldn‘t buy
it, hence we lived in Abingdon and then Cumnor, but we came back here. And
moving house was quite a big thing. But in the meantime, I was busy; I mean,
I wasn‘t doing nothing. I had had to give up playing the oboe after the heart
attack. I tried a recorder and I found that my breathing wasn‘t controlled
enough, and I realised oboes really do require an awful lot of breath control,
so what to play next? So we discussed this, and David said to me "well,
why don‘t you take up the double bass, after all, amateur orchestras always
need double bass players?", and I said "I don‘t know anything about
string instruments". Anyway, I was persuaded, as ever, to change. In
the meantime I played percussion at our amateur orchestra, and had a wonderful
time playing the two cymbal clashes in the Bruckner
4th Symphony. It‘s the only work I know in which there are only two
cymbal clashes. I had always wanted to do this, and lo and behold, you have
to have a heart attack to get a chance to do it! But it was fun. But after
that, I found myself a double bass teacher. I realised very quickly that
she wasn‘t going to be my teacher for very long. She had some horrible haematological
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illness that was going to kill her, and I think I spent more time visiting
her in my coffee breaks in hospital than learning the double bass. But by
the time she died, I also knew that that was not my instrument. It was big,
it was clumsy, I had to get other people to carry it for me - dear god, I
couldn‘t carry anything at the time - and you didn‘t get enough chamber music
on a double bass, and I wanted to play chamber music. So I changed to an
instrument I‘ve always loved, but never thought I‘d be capable of playing,
which was the cello. It has a tremendous range. And I had a friend in London who‘s been a keen cellist all his life, and he was thrilled
to bits. He had visions of me playing it terribly well, which of course I
didn’t, but, you know! But I had lessons for two or three yeas in Oxford.
I found myself a second hand cello, didn‘t like the modern ones, they were
heavy, and I made progress, after all, I didn‘t have to learn to read music,
I didn‘t have to learn to follow a conductor, so this was good. And David
was playing his bassoon in various orchestras, because bassoonists are always
needed, and once or twice I tagged along and sort of said, "please, I‘m
the wife, I play cello, not very well, but, you know, can I come along and
play?". I‘d done that with the oboe also! I went to a beginners’ orchestra,
and then I joined the Studio Orchestra in Oxford,
and I played there for years, and slowly built up a chamber music group.
We had a string quartet, which was lovely, for a few years. And it fell apart
a bit eventually when the second violin got Alzheimer’s, which was dreadfully
sad, and then our first violin, who did martial arts, went and cracked her
shoulder, but she‘s playing her violin again. And then one fine day, I was
walking down into the village, and it wasn‘t a fine day, it was a damp day,
and I skidded on a wet leaf. And I fell over, onto my right arm and shoulder,
and had to be brought home by car by somebody who found me there, and went
to the John Radcliffe. And they x-rayed it, and it was quite some break.
The ball at the top was completely shattered, and I had a big operation.
I‘ve now got a metal ball in there and a bit of metal going down my arm.
And I said to them "do you think I‘ll be able to play the cello again?",
and the first consultant I saw had obviously never seen string players, and
he said "oh yes, you‘ll be able to move your arm too and fro", and
I thought "oh". I eventually saw the consultant who I think did
the operation, and I’d got careful by then. I said "do you know anything
about string playing?!", and he said "well I don‘t play, but my
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and children do. So I put the question to him, and he said "well, we‘ll
do our best for you". And I had exercises and I had physiotherapy, and
I went back to orchestra, but I found after ten minutes I always had to stop;
it became really impossibly painful and difficult. And I went to a chiropractor
whom I knew, who‘d been looking after my back at intervals, and he said "ah,
I‘ll get this put right", and he couldn‘t. And he sent me back to the
consultant, and I saw another consultant, and he said "well, there‘s
nothing much wrong here, go for physiotherapy". So I’ve spent an awful
lot of time on this you know, physio doctors and all the rest of it. And
I saw a very sensible young woman, and she‘d seen this operation, and eventually
she said "Erika, I don‘t think I‘m going to get you any further, because,
either you tore two muscles at the back of your arm or they had to cut them".
So I thought, well, this is useless, you know, you can‘t play chamber music
and stop every ten minutes for quarter of an hour to rest your arm. So I‘m
at the moment in the process of trying to sell my cello, which has absolutely
devastated my life really, because I spent so much time on it. I was also
busy looking after my mother, who‘d become a bit peculiar. She didn‘t have
Alzheimer’s, but she had something, and she went into a nursing home. And
she tried to commit suicide at the age of ninety, and that had us rushing
round and doing things, in the middle of which I got a bowel infection, which
everybody said was because I was upset – and it wasn‘t, and I said it wasn‘t,
and I was proved right. I had an infection with Clostridium
difficile, which was the outcome of having had too many antibiotics
for my infected feet, and doing away with all the normal bacterial flora of
my large intestine, so that I was left with this thing called Clostridium
difficile, which is difficult to get rid of and difficult to grow.
And I never know why it‘s got the name, but I‘ve never grown it certainly.
So, you know, I had that and Mum to deal with, and there was music at the
time. And we‘d by then moved house to here and we had a huge garden. And
I started gardening quite actively, and mother was terribly worried, you know,
"should you be doing this, you‘ve had a heart attack?", and of course
it did me the world of good. And I learnt about gardening, because I really
hadn‘t known much about it, having been born in Vienna, you know, to continental
parents, it wasn‘t part of my upbringing. David knew about gardening, but
I had to learn from him. So I was busy. Oh, and we joined the history society,
the local history society, and we were both on the committee at various times,
and we were both treasurers at various times, and we still go along occasionally
now.
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you know, I had a good retirement.
You were spending a lot of time
at hospitals trying to get your shoulder right. How much time were you spending
on diabetes-related matters?
Well, also a fair amount, I must
say, because I was going to the podiatrist regularly for my feet. And the
chap in charge here at Oxford is fantastic, and the fact, I think, that
I didn‘t lose a toe or anything is very much due to his care and his observation,
because I got very painful feet at one stage, and it was thought I had some
sort of leg infection. And I went into the Churchill
Hospital, into the infectious diseases department,
and I had more antibiotics. And I got a little bit better, but not a lot,
and eventually I said “look, I‘m fed up with being in the place” – it was
August, it was dreadfully hot, David was visiting me every day, and, you know,
it was exhausting. And I suggested I came home, and they said “yes, alright.
We‘ll tell the podiatrist”. And Laurie King, that‘s the podiatrist, immediately
said “I‘ll get you to see the three wise men”. Once a month, the diabetic
patients who have had problems saw a plastic surgeon, a vascular surgeon and
the diabetic consultant, who is, of course, David Matthews. And so I went
along and I saw them, and David Matthews poked my ankle, and they decided
I had an abscess right inside my ankle. And there was a plastic surgeon there
as well, whose name I‘ve never been able to find out, I don‘t know. Anyway,
he said “all right, I‘ll do it either tonight or tomorrow morning”, you know,
“go home, get your stuff, come in, I‘ve got a bed in the plastic unit”. We
agreed that I wouldn‘t have an anaesthetic, a proper one, I‘d have a spinal,
which is an odd thing actually. And I thought I‘d be awake for this, but
I wasn‘t – I went out like a light all the same. But when I came round, the
operation on my ankle was wonderful. If you ever have to be sewn up by anybody,
get a plastic surgeon, it‘s amazing. And that was fine, and my feet have
been ever so much better ever since.
What year was that?
Golly, I suppose that must have
been about,
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I suppose it must have been about five or six years ago, I really can‘t remember.
But I came round from the operation, and I started to have the most appalling
diarrhoea, and I was in a plastic surgery ward, so they had me out of there
in a hurry, because it‘s not quite the thing to have there! But anyway, it
was the Clostridium difficile, which had reared its ugly head
earlier, come back with a vengeance, and I was very, very ill. My friends
from Australia were over at the time, and they told
me that David was really very upset because I hadn‘t been able to talk to
him for two whole days; I was out like a light. I had antibiotic, insulin,
glucose drips, you name it, all into the veins in my arms; oh I had such sore
arms by the time that was finished. But, I mean, they did control it eventually.
And I was in hospital for about three weeks then, I think; quite a long time.
How much time had you spent in
hospital before that for your diabetes?
Well, there was the time I had
the heal debrided, the time I had my heart attack – I didn‘t go into hospital
for some time, there was some sort of mix up there, but I went in eventually.
The consultant was away and the junior doctors were supposed to be getting
my diabetes balanced, but they hadn‘t a clue and they did nothing, and he
came back and he was furious. But anyway, he did the necessary, I don‘t know
what they call it, it‘s a sort of, they put a catheter into my heart and,
you know, took the photographs and things. And it got painful, so he stopped
and whisked me into the acute care ward, where I lay, again on a very hot
day in my shorty pink nightie, I remember it well. And I was there for several
days, and I think I made quite a reasonable recovery. But I woke up one morning,
and a bloke had been brought in in the night, and he was in the bed opposite,
because in the coronary care unit you were both sexes. And he woke up, and
he saw this apparition in a shorty pink nightie in the bed opposite, and I
shall never forget the look on his face! But anyway, no, I suppose that was
about three weeks. I have spent a lot of time in hospital.
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other complications have you had?
Well, when I reached the point
where I could hardly walk any distance, and where, if we went shopping, I
had to wait at the shop for David to get the car and pick me up again, they
finally decided that I should see one of the vascular surgeons. And she had
me in for angiograms, to see whether I was a suitable case for angioplasties.
And it was quite a worrying time, because she said "if you‘re not, if
we feel that we can‘t do these, then, well you know, there is a bypass sort
of operation that we can do, but I really don‘t think that would be a success",
and I knew perfectly well that if that happened I‘d be losing my leg or legs
up to the knee. So I was very worried about this, but mercifully they decided
they could do the angioplasties, and I had one done in November and the other
leg in January, I think.
Which year?
I think that was about six years
ago now, might be seven. I knew it wouldn‘t last for ever, but it was magic
while it did last, because while I had the one leg done, I felt as if I‘d
got one leg that was lighter than the other, and when the other leg was done…
I remember we went to South Wales, we stopped somewhere near Tenby. We went walking, we went
- what‘s the name of the island where they have all the birds on the corner
of Wales? - Sko...Skoer...Sko..., something like that. I climbed
up a steep sort of ladder cum stair case, and we walked round the island for
hours, and it was like having a second life, you know, it really was wonderful.
Because David and I had always been for walks, not necessarily great big hikes,
but we had always walked, we‘d enjoyed it, and I was able to do that again,
which was lovely. But, of course, over the years, it did get worse again,
and now I‘m at the stage where, yes, I can walk a mile, which is pretty good
actually, but I‘m starting to have problems with my back, which I‘m assured
are nothing to do with the diabetes, and I‘m afraid, you know, you‘re not
without other problems. But anyway, the angioplasties were well worth having,
and I have asked whether I could perhaps be considered for them again, but
I‘m told it‘s difficult – too many patients.
Any other problems?
Well recently I have had shooting
pains in my legs, and I‘ve been to see a neurologist, and he says "oh
well, yes, it‘s diabetic neuropathy, and there isn‘t much you can do about
that". I have been regularly to have my eyes looked at, and people always
say "oh, it‘s amazing, you‘ve been diabetic for so long and your eyes
are all right". I‘ve had cataract operations, but I don‘t think you
can link those to diabetes necessarily; I‘ve just had both eyes done. The
other thing that goes wrong, of course, for diabetics are kidneys, and, you
know, that can be devastating, and we know at least one person who lost his
wife because she had renal complications. So far, so good - I mean, that‘s
all I can say.
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You mentioned you knew someone who died of complications. Have you known
many other people with diabetes?
No, I‘ve only known type 2 diabetics.
I‘ve known very few type 1 diabetics. If I have known them, you know, we
were ships that passed in the night sort of thing, but the type 2 ones, of
course, because I‘m now in my seventies, a lot of people, yes. We have a
very, very old friend, she‘s eighty eight now, and she was diagnosed about
five yeas ago. She‘s always hated anything to do with illness. She‘s never
ever visited me in hospital, she‘s got a thing about that, and we are not
allowed to talk about the diabetes! I‘m just careful when she comes to eat
here, you know, not to put anything too tempting in her way. There was another
woman who lived in the village for years, who‘s been dead for some time now,
she never stopped talking about her diabetes. She was so obsessed with it
that anybody else in the village who had diabetes took good care not to let
her know. It takes people different ways. I have on occasion been asked
to try and talk to people who‘ve been newly diagnosed. I can remember one
occasion, actually, that wasn’t type 2 – that was a child, and they said to
me "look, you know, Erika, you‘ve been diabetic since a child. This
child won’t accept that she‘s diabetic, will you talk to this little girl?",
and I thought about it, and then I said "no, I don‘t think I can. I
don‘t think I can do any good because I don‘t know how she feels, I wasn‘t
like that". I have also been invited to talk to a poor bloke, at one
stage, whose wife had left him because, you know, diabetes does affect men‘s
performance more than women‘s, and I suppose she got fed up with no sex life,
and they thought, you know, I might be able to cheer him up. And I must have
been about twenty six at the time, and I thought then "what can this
cheerful twenty six year old do for this poor old forty five year old?",
or whatever he was, so I turned this one down too. But my mother had a friend
who had type two diabetes, and Peggy had it very badly, and there was a question
of her having to go on to injections. And she said to my mother once “well,
I don‘t like the idea of injections, but if Erika can do it from the age of
nine, then I reckon I could too”, and she was very good about it. And sadly
she died quite early; she had a heart attack and just went.
Is there any suggestion that
there may have been diabetes elsewhere in your family?
Well, the answer to that is we
don‘t know. My mother knows quite a lot about her family, and no it wasn‘t
there, but we don‘t know enough about the vast family that was on my father‘s
mother‘s side, just don‘t know. I do know there was an old grandfather who
was blind, that‘s about all I can tell you.
You‘ve had diabetes
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for sixty four years now. What state is your skin in?
My skin, I think, isn‘t too bad.
I have just managed to persuade my diabetic nurse to give me a different system
for testing for blood sugars. I‘ve been on about it for ages, and the doctor‘s
always said "oh no, not reliable, not good, not anything", but mercifully
she had a pile of these things in her office, and she didn‘t think it was
unreliable. So I have started using one of these systems where I can use
my legs and my arms, and not, at long last, only my fingers. I have found
it difficult on certain sites, and when I mentioned this to her, she said
"oh well, yes, we all get a bit more wrinkly as we get older!",
but I think I‘ve come to grips with it, and no, I don‘t think my skin is too
bad. I‘ve got these strange brown blotches on my ankles; they haven‘t gone
up my legs. I‘m not sure that anybody knows why one does get these, I don‘t
know; I‘ve never asked.
Now you talked about persuading
the nurse. What kind of relationships have you had with nurses over the time
you‘ve had diabetes?
Well I‘ve never had a diabetic
nurse until about a year ago, I have to tell you that; I missed out. New
diabetics get them immediately. This lady‘s been coming for all these years,
you know, nobody ever considered that I needed one, until recently. But I
am very grateful for having one, because I find that the nursing staff are
a little more practical in some ways, especially the diabetic nurses, because
they tend to be married, they are not there in uniform and working terrible
hours, and they know what real life is like. A lot of the doctors one meets
do not.
How does that show itself?
They tell you, you know, to change
this and change that, but they never say "is it convenient?" for
a start. And they have to have academic proof, I think, some of them, that
something will work. I know that at the John Radcliffe, I‘ve had doctors
who‘ve… they‘ve done six months in the laboratory and “now it‘s my turn to
do six months on the clinic”, and I have never felt that that was good. And
the doctors you see vary terrifically. I‘ve had some excellent ones, really,
really good ones, and I‘ve had some dreadful people.
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Any generalisations to make about the way the medical professions‘ treatment
of you has changed over sixty four years?
Well, I think I may be a bit
biased or on the wrong side. I was a medical type person myself, and it has
meant that I have always asked straight questions, and on the whole the more
senior of the doctors have always been perfecting willing to answer. And
I suspect that when I‘ve had problems, it may well have been because the doctors
didn‘t necessarily know the answer to my question, I don‘t know. But, you
know, there have been occasions when I‘ve come away feeling “well really,
I‘ve got nothing out of this one”.
Were more junior doctors reluctant
to answer your questions?
Sometimes yes, and certainly
when I was in with the Clostridium difficile,
I could not get any doctor to decide that I was fit, a) to come off the drips
in my arm, and b) to go home. And in the end I went to one of the nurses,
and I said "please send me a consultant", which she did, and he
said "yes, all right, you can go home tomorrow!", and I mean that
says it all, you know. It requires confidence on the doctor’s part, and,
you know, it is one of these things that, I‘d hate to be on the other side.
When you look back over your
life, do you feel that diabetes has played an important part?
I‘m quite certain it has, yes,
in lots of ways. Just the fact that I had to be more careful, that I had
to retire early, that when I am packing there are so many things I have to
pack that other people don‘t. And as one gets older, one acquires more pills
and medicines and things anyway. And if one acquires a husband, one has to
pack for him as well, at least a lot of us do, and, you know, in lots of ways
like that. There are certain types of holidays I would love to have that
I can‘t, partly because of the arterial problems, because I think, you know
“if we go to so and so, we‘re going to have to do an awful lot of walking.
Am I going to be able to keep up?”. We‘ve been on a lot of cruises, since
we‘ve been rich enough to go on cruises. And we go with Swan Hellenic, who
give excellent lectures and things, and, you know, they are very good, but
I have noticed that on the last two, perhaps, I‘ve had to work hard to go
on the outings. I‘ve enjoyed them, they‘ve been good, but I haven‘t been
able to do the extra running around that we used to do in the early days.
And I‘ve watched other younger people on the boat, and I‘m quite certain that
they have seen more than I have been able to, because they were able to disappear
down the back alleys or whatever. So yes, it has affected me.
Can you describe a
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day in your life now?
A typical day, nowadays, isn‘t
terribly interesting, but let me think. Well, I get up in the morning and
my husband makes the coffee, and eventually I get up and I have my breakfast
in my dressing gown, and I have toast and marmalade, or at the weekend we
have muesli, which I make myself, and we have coffee. Then I go and get washed
and dressed, and then it depends. If it‘s a Tuesday during the term-time
I go to my French conversation classes, because I‘m trying to keep my mind
active, even though my body‘s a bit disinclined to be active. I reckoned
when I reached seventy that everybody‘s busy keeping fit, and there ain‘t
no way in which I can do that, so I thought, right, I‘ll keep my mind fit,
and learning new vocabulary and things is one way of trying to keep your memory
going, so that is what I‘ve been doing; so Tuesday mornings I go to French.
Thursday mornings we go out shopping. Other days, well it depends, I mean
I might be gardening, I might be doing a bit in the house. I do have a firm
who come and clean the house for me once a month. Keeps me sane; I have a
very untidy husband and he tidies up before they come, which is great. Also,
I find things like vacuum cleaning quite hard work nowadays, I get tired.
I read a lot, I write the odd letter.
And where does your diabetes
fit into this - injections and so on?
Well, I have an injection before
breakfast, I have one before lunch, I have one before the evening meal, and
I am now, since January, on Glargine, which I take last thing at night, and
that is supposed to act as a sort of basic amount, you know, that keeps your
blood glucose at a reasonable level. I don‘t feel that I am well-balanced
at the moment; I spend an awful lot of time doing blood sugars. I‘ve been
asking at the clinic, I‘ve spoken to David Matthews about this, "what
can I do to be more balanced?", and nobody has been able to help, and
I‘m up and down like a yoyo. Talking to the nurse the other day, I suggested
to her that it may be because I have been injecting four times a day for so
many years now that the insulin either gets held up and then released suddenly,
or, you know, gets released suddenly one day and not the other, and how about
a diabetic insulin pump. Now, I have never met anybody who has had a pump,
I have never set eyes on one. I‘ve seen one programme on the box about it,
but I feel that if
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I‘m not going to go rushing into further complications, something‘s got to
happen. So, I talked to the nurse about it, and she said “the first thing
you‘ve got to do, in order to be even considered for this, is go on this course
that we offer fairly new diabetics” - learning how to adjust their insulin
to go with their food, which I thought was a bit of a joke for me, but I said
“yes, all right. I mean, anything I can learn is useful and please put me
down”, so I‘ve put myself down. God knows how long the waiting list is.
But when I next go up to the clinic, which I think is in August, I will put
it to whichever doctor I happen to see, and see what sort of response I get.
I don‘t think I can do much more at the moment.
Do you feel you already know
what you might learn on this course about adjusting insulin and diet?
I think I know a lot, yes, and
I don‘t think it‘s as easy as people make out, because what happens is you‘re
invited out to dinner, and you don’t know what you‘re going to get. And we
went out to dinner once with a fairly elderly lady, and what I didn‘t know
was that she ate a terribly low carbohydrate diet. And I had my insulin just
before we went into the meal, and I was careful not to drink too much alcohol,
because that can lower it, you know, and we went in, and we had a sort of
seafood hors-d’oeuvre with a minute little piece of thin brown bread, and
then there was a long gap. And we were chatting away, and she had some very
interesting people there, and I was talking to the lady sitting opposite me
and I was fine, you know, everything was lovely, and apparently the next minute
I was on the floor. I had had no warning at all at that point. And David
was the other end of the room, so he came rushing up and he, you know, tried
to feed me some sugar, and I came round. And they sat me up, and I gathered
from my GP they should have left me lying on the floor, because I felt terrible
for ages afterwards, and he said “you know, really, try and stay on the floor
another time if it happens again!”. But there had been this long gap between
the hors-d’oeuvre and her potatoes being ready, and even the potatoes apparently
were very small, as I had learnt at a previous time at her place. And, as
David told me afterwards, “the pudding was very sweet Erika”, but I didn‘t
get as far as that because I was sick afterwards. They rushed and phoned
the doctor. It was about eight at night, the doctor was out. He phoned back
eventually, and by that time I was okay. I said "it‘s okay, don‘t bother
to come, I‘m all right", you know, and we went home. But it‘s one of
the difficulties about thinking that you know what to do. You can‘t always;
mostly yes, but not quite always.
What would your message be for
somebody newly diagnosed with diabetes?
a) Be honest about it, don‘t
try to pretend you haven‘t got it. The other thing is - well it depends on
their attitude - you see, I was always told that diabetics lead normal lives,
and it was my husband, after about three years of marriage, who said to me
one day - I can‘t remember what happened - he said "you know, it isn‘t
really true is it, that you lead a normal life?". And it isn‘t true
– you don‘t lead a normal life, you have to have your mind in two places.
However much you may be interested in being the deputy prime minister, though
he‘s not on insulin, or whatever else you do, you have got to remember certain
things, and your mum isn‘t always behind you to say "have you got sugar
in your pocket, Erika?" or, you know, whatever. So, I think, be honest
about it. Be prepared to study it. The worst thing you can do is pretend
it isn‘t there, because if you get to know about it, for most of your life
it won‘t affect you too much, you‘ll be able to lead a happy life, a full
life, an interesting life. And I can‘t tell them what happens at the end
– I haven‘t quite got there.
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