Dutch language

How to pronounce hereditary in Dutch?

Full Transcript

What if you had to choose between being deaf or blind? What would you choose?
'I can't choose'. Or 'I find it too hard to choose between the two. It's too big.'
I can't choose either, not because I don't know what I would consider worse...
not being able to hear or not being able to see.
I can't choose because I don't have a choice. I will become both deaf and blind.
My brother and I both have Usher syndrome type IIa. The syndrome has many varieties.
Our variety means that we were born with very poor hearing...
and we were night-blind from adolescence.
Currently, I'm looking through a tube of 10 to 20 degrees, I was recently told.
The expectation is that in a number of years, five or ten, we're not exactly sure...
this tube will be as narrow as a straw, and eventually I will be totally blind.
Silence at Night
Hi, brother. -Hello, sister.
Of course, I quickly realised, but I think mom was the first one to say it.
Marc, you realize this also has implications for Joyce? And I was like: Shit, of course.
Both hard of hearing, both night-blind, both visually impaired by day.
And hereditary, so it was obvious.
Yes, that was the reason why I, and especially mom, realised:
Perhaps we shouldn't tell Joyce yet.
We couldn't tell you yet, because it was so severe.
I thought that was reasonable, because first I wanted to let this settle in..
and I wanted to wait for the second opinion of that doctor in Rotterdam.
The time wasn't right yet, because you were struggling with personal matters.
I had a serious burn-out...
and you wanted to take some time to give me a more optimistic picture of the future.
I had a severe burn-out when I was fifteen.
I was completely exhausted...
and wasn't aware it could have such an impact, being auditory and visually impaired.
All I could do was lie in bed and cry, and I was really depressed, due to the fatigue.
I couldn't keep up. Everything was exhausting.
I remember one time I started crying and couldn't stop. I stayed in bed for days.
I had picked myself up, we had just come back from holiday and I felt quite alright.
It was summer vacation.
I was always out and about. That's me as well, always on the go, having fun.
My parents thought: We have to find an excuse to keep Joyce at home...
or she will be gone again and we will never be able to tell her.
And everybody used to drop by our house.
So at one time... I have a close relationship with my brother.
We used to go shopping. He knew that if we went shopping, he'd have me to himself.
He said: You want to go shopping on Monday, when the shops are open, after lunch?
So we'd had our lunch...
and looking back, I did feel some tension...
but you don't see this coming, so I was preparing myself in the bathroom.
I went downstairs. I was annoyed at my brother and said:
Hurry up, put your shoes on. I want to go, the shops will open soon.
My mother said: You're not going into town.
We have to talk to you.
I'm getting emotional.
Take your time.
Well, and then...
And then she told me what had happened in the previous months.
That my brother had been diagnosed...
with Usher syndrome.
It was such a bizarre moment, because you have no idea whatsoever...
what is happening.
I thought it was a joke.
But when I looked at my parents, I realised it wasn't a joke.
For how long have you had this syndrome? -You're born with it. It is hereditary.
It was RTL Late Night. -Oh, right.
Joyce sat on the show and told her story about Usher.
It manifests itself from birth, when you know if you are hard of hearing...
and from adolescence you turn night-blind, at least with my type.
And then we started searching the internet. We thought: night-blind, hard of hearing.
Everything added up. We took a week for ourselves to come to terms with it.
Her teacher sent us a message. We know her well. She said:
I'm afraid to ask, but have you seen RTL Late Night?
One of the questions we got. We called her right away.
She was in tears and said: This is Nikki.
At first, it is not really acknowledged...
because you start doubting yourself and wonder if you're just putting on airs.
It wasn't until the third examination that we said something had to be wrong...
because her teacher had told us she always had to turn up the volume of the TV.
And rather grumpily, that man said: Well okay, let's try a hearing aid then.
As a trial, she put on the aid and I'll always remember she was in the back of the car.
She started singing along. -She did. She'd never done it before.
I said: Honey, why are you so cheerful?
She said: I didn't know there was sound in the back too. I hear a song all of a sudden.
The tears ran down my face when she started to sing in the back.
That was just so beautiful.
So we knew it had been really serious. This wasn't just a minor hearing impairment.
She's never taken them out. She wore them to bed. We had to pull them out.
And she's been doing so to this day. They're almost part of her body.
At first, some people just didn't understand, especially in school.
People often started laughing whenever I stumbled, which was very annoying.
At one point, I thought: If I won't tell my story, people will never understand.
They didn't know I really couldn't see it.
It made me feel bad, because you can't help it and it makes you feel a bit embarrassed.
If people start laughing at you as well, it doesn't feel good...
but after a while I realised I had to do something about it, if I wanted it to stop.
I can communicate much better with them, because it's far less complicated.
They either understand you or they don't.
And I have an idea animals don't judge me.
So I have the idea that when I stumble over something, animals can't laugh at me.
Eventually it would be great if I managed to compete at the Paralympic or Olympic Games.
That's a big dream and I'm not sure if it will come true...
but it would be my biggest dream come true to ride at the Paralympic Games.
I saw my friends ride their bicycles home after late night shopping.
I was just focussing on their backlights and I simply couldn't keep up with them.
Those were the first signs telling me something was wrong.
When I was around 15 years old, I noticed my eyesight by day started to deteriorate.
I shared my story about living with Usher syndrome in Humberto Tan's show...
and that elicited a torrent of reactions.
You have an interesting story and you can tell it too. You should do something with it.
Speaking in public appealed to me and I thought:
This way, I can use my story to let other people benefit.
I'll never be happy with Usher, but it would make me happy if I could do some good with it.
Her attitude to life and the way she picked herself up...
from the diagnosis 'You are fully disabled, you're declared unfit'...
to 'I've got my own company and I'm going to inspire other people...
in finding ways to change and still find positive things'.
At first, I found it very awkward and I still do, really.
Because I, too, still have my struggles, bad days, fears, insecurities and grief...
but by now I see it as my mission to share a sincere story.
I'm gradually losing part of my sight and hearing...
so I'm living in an ongoing process of change.
But I do have a choice. How will I deal with it?
Will I be led by fear? Will I wait for the moment someone else will decide for me?
Or will I take charge and the initiative to determine my own future?
I've done the latter.
And it's not always easy, I'm not just here to tell you a great story...
but I always managed to find ways to keep participating in society...
and to do things the way I want to.
It's easy for us to say you have to think positive and look at what you still can do...
but I think it's crucial to also hear it from people who have the same illness...
a very unique defect...
but to hear it also from people who manage very well in life.
I think that's the best example of something we can't give her.
Hello. Oh, you're cute too. -Come here. That's Joyce.
They're beautiful. -I heard you have pink inside.
We do, a lot of it. -I haven't bought any orange.
Come in. Will you take Coopie? Coopie, let's go.
Joyce, watch out for the threshold. We've put in thresholds everywhere.
To make things as hard as possible for Nikki. -On the contrary. Look over there.
We tried to take all thresholds out. -Yes, inside all thresholds are gone.
That one didn't come out.
I think it's very important to always have someone you can trust.
If not, I used to stay home, I recall.
And that this person knows very well what you can and can't do.
How do you know you can trust someone in this respect?
If someone asks you: What do you need? What can I do?
You know you can trust that person.
I think you just feel it.
I think it's up to you to find a way to tell it to people in such a way...
that they're prepared to help you.
I've never heard anyone say: I really don't want you to hold my hand. That never happens.
During my studies, I never mentioned Usher. I used to say I was night-blind, very seriously.
'If you want me to fall from these steps, just don't hold my hand.' That was enough.
We learn to ask for help from a very young age.
Yes, there were some people I thought I could trust...
but it happened quite often that things went wrong, because I was all alone.
Yes, it's an advantage people don't see much on the outside.
Right, but also a disadvantage at times.
That's right, because sometimes people forget and they say: Oh, right.
So I really had to learn to say: Okay, I can't see it anymore. Hold on.
Help, I can't see anything. Is there anyone who can help?
But that's quite a big step.
I don't think you should expect yourself to be able to do so from one day to the next.
It's hard at your age. Adults are far better in taking another person's position and help.
But what I recognise is that at your age everybody is preoccupied with themselves.
That's not to judge people, but that's just how it is.
I always say: Just ask me. You can ask anything you want.
I'll tell you if I don't want to answer them.
I think questions are fine, everybody can ask what they want...
but I still won't say anything or take the initiative and explain it.
No, I understand, because it makes you different from other people.
What I think is great about you is that you have a passion and know what you want.
I wish I'd had that when I was your age.
My zipper is stuck.
You have to open your zipper first.
Should we cut this out?
You're very quiet.
Let's go.
Me and Martijn did have the opportunity to make the conscious decision:
Do we dare to have a child? It could have Usher.
I immediately knew: I have a great life, I'm happy I'm here
If I said no to the possibility of having a child with Usher, I'd say no to my life...
but that's not at all how I experience it.
You'll make stracciatella pie, Lieke? You're very good at it.
What's next?
You still have to put in the pastry, right?
Put one... Put two thirds of the pastry...
on the bottom and the side of the baking tin.
Yes, the bottom and the side and you use the rest for the top, but we do that later, okay?
And then fill the baking tin with the apples and press it.
For how long should it go in the oven? -60 to 75 minutes.
I'll put it down anyway. -Yes, that's bad for me, because I have a 2.
I'm winning anyway.
You're sure? -Positive.
Eleven, twelve. -Well done, Loïs.
Four, five, six, seven, eight.
Four, five, six, seven, eight, nine. -I haven't had one Skip-Bo card yet.
I remember I'd just graduated, I had received my certificate...
and I was at my brother-in-law's birthday party and I looked around and thought:
Why not?
Martijn is 12 years older and had been ready for years, but first I wanted to graduate.
We could name a thousand reasons why it was inconvenient.
We had a very small house, I hadn't climbed the career ladder the way I wanted to.
I can still see quite well and I can still take care very well for a small child...
that requires intensive care.
To us, that was the only reason that dismissed all objections.
After six months, I was pregnant.
But you have one Skip-Bo card. I've got none. -It's your turn, Lieke. Go for it.
Show us what you got. -Zero Skip-Bo cards. Great.
Do you have a one? -No, I don't.
Too bad.
Sometimes I wake up exhausted, because I have to pay the toll for the previous days.
But I'm always aware I have to take care of my girls.
That never stops and it forces me to get out of bed and keep going.
The same with my work.
It gives me so much positive energy that it always stimulates me...
to keep going.
No, you were talking about me. -You're Sinterklaas' little helper.
Dat was ik.
Nikki is 15 years old now and she has Usher type III.
As far as I know, that's the most rare type of Usher syndrome.
She was born with good hearing and when she was 8 or 9 she got hearing aid.
And when they'd seen me on RTL Late Night, they realised Nikki probably had Usher too.
Is she night-blind as well? -She is.
She saw her future in me. It felt like quite a responsibility, going there.
I remember we were looking for other people who had this.
You're looking for people to hold on to, people who are further on in the process.
Now I knew people would look at me that way, so it was quite exciting.
A responsibility. -Yes, and I want to show her some hope.
On the other hand, I don't want to trivialise things and pretend it isn't that bad.
I always find it hard to convey that message.
How do you look at the future?
We have a bit more hope now.
It's nice that through Joyce we're close to the Foundation...
so we get a lot of first-hand information...
from the medical side of things...
so occasionally you get a positive message and you think: Wow, nice.
We've always tried to support them as much as possible, when needed...
but they manage very nicely.
We said: If something comes up and we can help you...
no matter if it will take 100.000 or 150.000 euros...
we'll sell our house, move to a flat and make sure you will be covered.
I sometimes say I see my disease as being in prison.
I'm in prison and I want to do all sorts of things, but the bars confine me...
but I'm also aware that it depends on me, on my mindset, how I cope with it.
I can't change the disease, but I can change the way I deal with it.
I address this a lot in my talks.
I started using the prison metaphor...
because I think it's up to me to keep seeing the space between the bars...
no matter how tiny the crack sometimes may be.
To the question what you would choose, being deaf or blind...
that was of course often returned to me.
And I would say outright: As long as I have my eyesight, I will manage.
But I realise more and more that this answer is not that easy anymore...
because if you can't hear, you can no longer take part in conversations between people.
We live in a hearing and seeing society, and if you can't take part in conversations...
I think you will become very isolated in society...
because not everyone will be prepared to learn sign language for you.
So it's my fear that your world may become even smaller if you can't hear.

What if you had to choose between being deaf or blind? What would you choose?

Toggle Transcript

hereditary::adjective | Spocien Dictionary

hereditary

adjective

/hə'rɛdɪ,tɛri/

occurring among members of a family usually by heredity

Type	Words
Synonyms	familial, genetic, inherited, transmissible, transmitted
Derivation	heredity

hereditary::adjective | Spocien Dictionary

hereditary

adjective

/hə'rɛdɪ,tɛri/

inherited or inheritable by established rules (usually legal rules) of descent

Type	Words
Synonyms	ancestral, patrimonial, transmissible

hereditary monarchy.

How to pronounce hereditary in Dutch?

hereditary::adjective | Spocien Dictionary

abandonment

Related words

hereditary::adjective | Spocien Dictionary

abandonment

Related words

Related

Subscribe to our Newslatter