Hello! I am Hyung-Jin Shin,
‘combined master and doctorate program’ student
in Yonsei University majoring Computer Science.
The handsome boy in the video that you saw just now is me.
I look much better in person than in video, right?
I am really pleasant to have chance to talk with you people through TEDxEonjuro.
I hope the time with me remains a fond memory for you.
I believe that the video has introduced me enough,
so I would like to move on to the topic I wanted to discuss with you.
You might think my appearance is somewhat peculiar.
That might be because I am lying on the wheelchair with
notebook PC with various equipments hanging.
Besides, my voice might sound creepy just like 'robot cop' talking with computer device.
However, actually, I am also a normal graduate student just like the people around you.
I am also taking lectures, doing assignments, taking lots of examinations,
reading papers all night, and also going outside to hang out
with my family and friends just like the normal young man of South Korea.
But, of course, I look a little more peculiar
and live more perplexingly compare with others.
Nevertheless, it’s just a little difference.
Are you saying you can't believe me?
I look too handsome and unique that you expect something different?
Okay then, I will tell you my daily schedule.
It might be very platitude,
but please suppress a yawn and hear me out.
9:00 A.M.
That is the time I usually wake up.
When there is no lecture to take, then I oversleep.
You might think it’s rather late for me to wake up,
but waking up late is only because I always study late the night before.
It is not because I watched movie or read comic books.
I’ll be shot if I’m telling a lie.
Hahaha!
Well, it sounds eerie to laugh with computer voice.
My voice is too small that the computer voice
is obliged to use. I hope you understand.
Ok, I will go on with my speech.
After I wake up, the first thing I do
is taking off my respiration mask
which I had on all night.
Have any of you ever thought of
how often you breathe a day?
Nobody can live without
taking a breath for any length of time.
However, no one is aware of breathing
or endeavor to breathe in general.
But I do.
As you can see in the previous video,
I have Spinal Muscular Atrophy disease
(SMA muscular disease) ever since I was born.
According to this, my muscles are not well developed that
I cannot use my strength.
Also, because my respiratory muscle waned that
I always feel menace to breathe.
Therefore, I cannot live without
other’s help for anytime day or night.
There are many researches going on,
but still no treatment for my disease so far.
There is only one SMA patient appears out of about 6000 people,
and I won the one seat.
Come to think of it,
I might be a very fortunate man.
For me, breathing is kind of labor.
Thus, when I sleep,
I must put on the respiration mask
to make my respiratory muscles to rest.
Sometimes, when I wake up,
I found out my nose and face have reddish mark
which made by the silicon mask pressure.
When that happens,
my face really is something to see.
After I take off my mask,
my mother helps me to wash
my face and to relieve myself.
Then I eat breakfast.
The way of eating food, however, is a little bit
different comparing to others.
In fact, I was a gourmet just like my father.
I really enjoyed eating food.
One of my childhood dreams was to be a great cook.
Until now, I still enjoy watching TV shows about cooking
which introduce delicious food and nice restaurants.
Korean bean-paste stew, pizza, meat, and etc.
There was lots of food that I liked.
There was also a steakhouse where I often go with my family.
Of course, I felt little uncomforted when eating,
but I had no problem digesting most of the food
if they are chopped into small pieces, naturally.
However, after staying 2 years in hospital,
maybe it’s because I had tracheostomy too long that
I am having problem chewing and swallowing food.
It’s been 6 years I could not eat food through my mouth.
Recently, as you can see,
I connected gastrostoma tube with my stomach
and take nutrition porridge with this.
It’s been a long time,
I haven’t tasted a food and feel satiated.
The only advantage of having the gastrostoma tube is that
I can push in nutrition porridge fast when I am busy.
Oh, there is another thing.
The medicine that I am taking is disagreeable to the taste.
But, I can take the medicine without burdens because
I don’t notice a difference with taste anyway.
After having food with my gastrostoma tube and getting my clothes on,
I go to school to take classes in the afternoon.
When I go school,
I move with my mom and an activity assistant from government.
When I go out, I usually ride a car.
In the past, I took a van with the wheel chair lift.
Recently, I am riding specially remodeled car
which can move my wheelchair to front seat
without me getting off from it.
My driver is my mom, who is a veteran driver.
She has been driving to and from school for 22 years.
She always drives like a speeding taxi
afraid of me getting late for school.
Her driving skill is awesome.
Sometime, I crack a joke saying,
after I graduate school she can be a professional bus driver.
When I arrive school,
I hurry up enter the classroom before I am behind time.
During the class,
there is also an assistant from school who aids writing notes for me.
He sits next to me and when I suffocate,
he helps me call my mom.
My mom always stands by and
be ready to come to me just in case I stifle.
As a matter of fact. there was one time
I was choked and called ambulance
when I was in high school
The contents of my mom’s pray is that
‘It doesn’t matter my son cannot move,
but please let him breath well
and let him release from the breathing pain’.
That is all because I had
and having hard time cause of respiration problem.
Fortunately. at present,
I am taking new treatment called respiratory rehabilitation treatment
which made me much better than before.
Now. there are no more lots of obstructive phlegm in my throat
and also I am able to go out for a long time.
Undoubtedly, I still have to be careful of pneumonia and catching a cold.
After school, when I get home,
I use computer until I go to bed.
Do you know how I, the one who cannot stir a finger, use computer?
The fact is that I use ‘eye-controlled mouse’, the special input system.
By using eye-controlled mouse and screen keyboard,
I also can use computer like others.
The eye-controlled mouse chases my eye movement
and shifts the cursor, and perceives the blink
and that helps me to click.
Plus. I am using the screen keyboard
to type letter one by one.
Needless to say, using ‘eye-controlled mouse’
was not that easy at first.
It made my eyes fatigue easily,
and when I think cockeyed thoughts,
it clicks on irrelevant place where I didn’t expect.
In former times, dust or something went into my eyes which made my eyes really sore.
So, I blinked eye several times,
and that clicked on an X-rated advertisement.
I was really happ….
Oh, I was so embarrassed that
I quickly turned off the monitor.
Hahaha!
Oh, another awkward guffaw.
Anyway, blinking and moving eyeball need more efforts and time
than using normal mouse.
However, I was so glad I could use computer with eyeball-mouse
that I barely feel the difficulty.
As I use it several times, I have got used to it.
Now, the blinking-click got accuracy and speedy
that I can chat with my friends on-line.
It was just like having extra strong arms!
Normally, I use computer to study until 2~3 A.M.
If I have assignments or examinations, I stay up all night.
My mom helps me changing my positions
and helps me feeding.
When all my works are done,
I wear my respiration mask and go to sleep.
That is the end of my long daily life.
I live everyday with this kind of pattern.
It looks tough and difficult,
but I could plow my way through the waves with others’ help.
As the result of my hard work and helps from other people,
I could finish my elementary, middle, high school just like others,
and also could graduate undergraduate program in 9 years.
Recently, I am taking
a ‘combined MA and Ph.D program’ in Yonsei University.
What do you think?
Does my day seem ordinary?
Maybe it is a little different with your life.
Most of you will not think precious about everyday life,
such as breathing, eating, studying, and going out to play
because those are undoubted matters for everybody.
However, for me, a person with an advanced disease,
those things are very extraordinary and
need blood-and-tears endeavor to do such things.
There are some people who cannot even do those things by themselves.
Just like my case.
The ordinary things that I mentioned just now,
I cannot do them without someone’s help.
I barely breathe myself.
However, I could continue my life by help of family,
friends, many other people, and God.
I had dream of enjoying this wonderful life
when I just got born and thought it’s unrealizable.
This was once believed to be impossible, but somehow,
the impossible has now become feasible, just like presenting at TED in front of people.
Not only me, but
there are lots of people with
an advanced disease living fiercely every moment.
They use the term saying ‘everyday is like a war’.
Therefore, please cherish your everyday life.
Breathing, eating, working, and moving, every moment
seems not a big deal with you.
But please remember that for someone else,
they use their utmost endeavors for the daily life,
and feel so thankful
that they are in tears to live everyday.
So, that’s the end of my story.
Thank you for listening.
Mr. Shin! Perhaps,
Is there anything that you want to say to the audience?
Thanks for listening to the end.