Transcriber: Bob Prottas Reviewer: Ariana Bleau Lugo
and I just turned 17.
A few years ago, before my freshman year in High School,
I wanted to play snare drum in the Foxboro High School Marching Band,
and it was a dream that I just had to accomplish.
But each snare drum and harness
weighed about 40 pounds each,
and I have a disease called Progeria.
So just to give you an idea, I weigh only about 50 pounds.
So, logistically, I really couldn't carry a regular sized snare drum,
and because of this the band director assigned me to play
pit percussion during the halftime show.
Now pit percussion was fun.
It involved some really cool auxiliary percussion instruments,
like the bongos, timpani,
and timbales, and cowbell.
So it was fun,
but it involved no marching, and I was just so devastated.
However, nothing was going to stop me
from playing snare drum with the marching band
in the halftime show.
So my family and I worked with an engineer to design
a snare drum harness
that would be lighter, and easier for me to carry.
So after continuous work, we made
a snare drum apparatus that weighs only about 6 pounds.
I just want to give you some more information about Progeria.
It affects only about 350 kids today, worldwide.
So it's pretty rare,
and the effects of Progeria include:
tight skin, lack of weight gain, stunted growth,
and heart disease.
Last year my Mom and her team of scientists
published the first successful Progeria Treatment Study,
and because of this I was interviewed on NPR,
and John Hamilton asked me the question:
"What is the most important thing
that people should know about you?"
And my answer was simply that
I have a very happy life.
So even though there are many obstacles in my life,
with a lot of them being created by Progeria,
I don't want people to feel bad for me.
I don't think about these obstacles all the time,
and I'm able to overcome most of them anyway.
So I’m here today, to share with you my philosophy for a happy life.
So, for me, there are 3 aspects to this philosophy.
So this is a quote from the famous Ferris Bueller.
The first aspect to my philosophy is that
I’m okay with what I ultimately can’t do
because there is so much I can do.
Now people sometimes ask me questions like,
"Isn’t it hard living with Progeria?" or
"What daily challenges of Progeria do you face?"
And I’d like to say that, even though I have Progeria,
most of my time is spent thinking about things
that have nothing to do with Progeria at all.
Now this doesn’t mean that I ignore the negative aspects of these obstacles.
When I can’t do something like
run a long distance, or go on an intense roller coaster,
I know what I’m missing out on.
But instead, I choose to focus on the activities
that I can do through things that I’m passionate about,
like scouting, or music, or comic books,
or any of my favorite Boston sports teams.
Yeah, so -- (Laughter)
However, sometimes I need to find a different way to do something
by making adjustments,
and I want to put those things in the "can do" category.
Kind of like you saw with the drum earlier.
So here’s a clip
with me playing Spider-Man
with the Foxboro High School Marching Band
at halftime a couple of years ago.
♫ Spider-Man theme song ♫
All right, all right, so --
That was pretty cool,
and so I was able to accomplish my dream
of playing snare drum with the marching band,
as I believe I can do for all of my dreams.
So hopefully, you can accomplish your dreams as well, with this outlook.
The next aspect to my philosophy is
that I surround myself with people I want to be with,
people of high quality.
I’m extremely lucky to have an amazing family,
who have always supported me throughout my entire life.
And I’m also really fortunate to have
a really close group of friends at school.
Now we’re kind of goofy, a lot of us are band geeks,
but we really enjoy each other’s company,
and we help each other out when we need to.
We see each other for who we are on the inside.
So this is us goofing off a little bit.
So we’re juniors in High School now,
and we can now mentor younger band members,
as a single collective unit.
What I love about being in a group like the band,
is that the music that we make together,
is true, is genuine, and it supersedes Progeria.
So I don’t have to worry about that
when I’m feeling so good about making music.
But even having made a documentary,
going on TV a couple of times,
I feel like I’m at my highest point
when I’m with the people that surround me every day.
They provide the real positive influences in my life,
as I hope I can provide a positive influence in theirs as well.
So the bottom line here,
is that I hope you appreciate and love your family,
love your friends, for you guys, love you Bro’s
and acknowledge your mentors,
and your community,
because they are a very real aspect of everyday life,
they can make a truly significant, positive impact.
The third aspect to the philosophy is,
Keep moving forward.
Here’s a quote by a man you may know, named Walt Disney,
and it’s one of my favorite quotes.
I always try to have something to look forward to.
Something to strive for to make my life richer.
It doesn’t have to be big.
It could be anything from
looking forward to the next comic book to come out,
or going on a large family vacation,
or hanging out with my friends,
to going to the next High School football game.
However, all of these things keep me focused,
and know that there’s a bright future ahead,
and may get me through some difficult times that I may be having.
Now this mentality includes staying in a forward thinking state of mind.
I try hard not to waste energy feeling badly for myself,
because when I do, I get stuck in a paradox,
where there’s no room for any happiness or any other emotion.
Now, it’s not that I ignore when I’m feeling badly,
I kind of accept it,
I let it in, so that I can acknowledge it,
and do what I need to do to move past it.
When I was younger, I wanted to be an engineer.
I wanted to be an inventor,
who would catapult the world into a better future.
Maybe this came from my love of Legos,
and the freedom of expression that I felt
when I was building with them.
And this was also derived from my family and my mentors,
who always make me feel whole, and good about myself.
Now today my ambitions have changed a little bit,
I’d like to go into the field of Biology,
maybe cell biology, or genetics,
or biochemistry, or really anything.
This is a friend of mine, who I look up to,
Francis Collins, the director of the NIH,
and this is us at TEDMED last year, chatting away.
I feel that no matter what I choose to become,
I believe that I can change the world.
And as I’m striving to change the world, I will be happy.
About four years ago,
HBO began to film a documentary
about my family and me called “Life According to Sam”.
That was a pretty great experience, but it was also four years ago.
And like anyone, my views on many things have changed,
and hopefully matured, like my potential career choice.
However, some things have stayed the same throughout that time.
Like my mentality, and philosophy towards life.
So I would like to show you
a clip of my younger self from the film,
that I feel embodies that philosophy.
I know more about it genetically.
So it’s less of an embodiment now.
It used to be like
this thing that prevents me from doing all this stuff,
that causes other kids to die,
that causes everybody to be stressed,
and now it’s a protein that is abnormal,
that weakens the structure of cells.
and it takes a burden off of me because now
I don’t have to think about
Progeria as an entity.
Okay, pretty good, huh?
So, as you can see I’ve been thinking this way for many years.
But I’d never really had to apply all of these aspects of my philosophy
to the test at one time, until last January.
I was pretty sick, I had a chest cold, and I was in the hospital for a few days,
and I was secluded from all of the aspects of my life that I felt
made me, me,
that kind of gave me my identity.
But knowing that I was going to get better,
and looking forward to a time that I would feel good again,
helped me to keep moving forward.
And sometimes I had to be brave,
and it wasn’t always easy.
Sometimes I faltered,
I had bad days,
but I realized that being brave isn’t supposed to be easy.
And for me, I feel it’s the key way to keep moving forward.
So, all in all,
I don’t waste energy feeling bad for myself.
I surround myself with people that I want to be with,
and I keep moving forward.
So with this philosophy, I hope that all of you,
regardless of your obstacles,
can have a very happy life as well.
Oh, wait, hang on a second,
one more piece of advice –-
Never miss a party if you can help it.
My school’s homecoming dance is tomorrow night,
and I will be there.
Thank you very much.