Sons and daughters,
Or how do we communicate with our children about
our disease. Kees with his wall started this
topic. A few others followed. I recognised things
in every story. I give mine. Writing and reading
story's like this is useful even if the ideas about
what to do don't suit the reader. Thinking about your
own opinion is easier when a contrasting opinion is
available. I agree with Barb., who said we are a
reminder of their vulnerability for others. To exaggerate,
I say sometimes: I am a walking momento mori. People don't
like that, though I have experienced this is partly
culure bound. This is another topic for another time.
Twelve years ago I was diagnosed with PD. From the
beginning my disease was evident for anyone who saw me.
Joe Young wrote (8-12) :"I reached the age of 60 never
having met a PWP" and asked himself why. I saw a few
times one in public, but the ones I saw had symptoms
so futile that only a sharp eye could detect them.
Only when I attended meetings of the PWP organisation
I saw symptoms which only a blind person could
have failed to notice. The only explanation seems to
be that people with serious symptoms live withdrawn
lives. Experiencing the reactions of people in general
it was clear they were not used seeing patients like me.
So I had to get used to their reactions, which were
negating, moving away, embarassment.
Sometimes however somebody reacted otherwise, asked
straightforward whether I had Parkinson or MS or
whatever and than added they knew about it, having
a brother or mother or someone else close to them with
the same sort of problem. For these people I was a
normal approachable human being.
Once however a family member of a PWP had the opposite
reaction. A woman who lived nearby crossed the street
to avoid me. An neighbour told me this woman could not
bear to meet me because her own mother had PD. A very
sad story. She must have felt terrible.
It would be dreadfull not only for me but yet more so
for themself when my children would in the future react
like that on others.
I have a son and a daughter; now 24 and 22 years.I know
it is a stereotype, but it so happened that my son distanced
himself somewhat and my daughter reacted more emotional.
They were to young to be able to understand what was happening
to me when the illness started. My son's reaction was the
easiest for me. He was helpful when asked.
He was not indifferent but did not talk and not knowing
wether he whished to was the only difficult thing for me.
My daughter was very angry with me. She did not want to
hear anything that referred to my illnes. She was embarrassed
seeing the embarrassment of others,but at the same time
felt very guilty about her own reactions. I have tried to
tell her that her anger was quite normal and that I, by
getting ill was a mean trick and that often adults for the
same reason did feel anger too, but that they were more
clever in hiding it. Later I added she had to learn some
hiding too. The following is an example of this kind of trouble.
Once being in town together to buy some clothes, she got
angry because I was dyskynetic. I, angry too, gave her her
trainticket and said: go on your own, do as if you don't know
me and go home.
After such rows I feared she would grow up to be like that
avoiding woman.
My wish to do something to prevent that was in conflict with my
wish to protect her against sorrow at the moment.
After some time the problem moved to the background. We all
got partly used to the situation and the children were pubers.
We had a reasonable good life. For the children, taking friends
home has never been a problem. They told every new one about
my disease. I never noticed any of them being embarrassed. They
liked it here and in the week-end evenings in our house were
a coming together with the friends of both our children.
I now make a jump in time. My son started h‹s university study.
He came home from his first week of introduction in university
and told about a boy in a weelchair who was in the group. He
had talked quite naturally to this boy. However to his surprise
he was the only one who could do so and he had realized he owed
this to his experience with me. So I had my turn to be surprised.
In the following years he had more story's like that. In a meeting
he attended, students had advocated the abolishment of research
on animals. He had explained why that was not realistic by telling
about Parkinson research. He had told too why he knew that so well.
It is really brave to do that, knowing misunderstanding is probable.
My daughter went to university too. Coming home in week-ends it was
for her difficult to see me when being off. My symptoms increased
and she saw it clearly. She said she could not bear to see me
suffering. At that moment it seemed to me not wise to protect her
by hiding the symptoms. I told her my disease is very serious indeed
and of course it is not easy, but I was alive and I valued that.
Some people think having a disease like that makes one live in hell,
but she could see herself that was not true and she did not help me
by making my suffering her suffering. Things like that need much
repetition.
The moment came she had a book about biological psychology, had read
about Parkinson and started asking me questions. A few weeks ago
she said that she felt being more grown up than some of her co-stu-
dents by what happened to me.
We both love literature and discover how much we have the same taste.
Talking about it with her is a real plaesure. A similarity as that
makes a closeness that in fact was felt much earlier.
That could be one of the reasons why the coming to terms was for
her more difficult than for her brother.
Ida Kamphuis
Holland
