My philosophy for a happy life | Sam Berns | TEDxMidAtlantic

Summary

In this inspiring speech, 17-year-old Sam, living with the rare genetic disorder Progeria, shares his philosophy for a happy life despite his challenges. He emphasizes the importance of focusing on what he can do, surrounding himself with supportive people, and always looking forward to something positive. Sam's story, including his dream to play snare drum in his school's marching band and his family's contribution to Progeria research, demonstrates resilience and a zest for life that transcends his physical limitations.

Takeaways

• 🥁 Sam's Passion: Sam's dream was to play snare drum in the marching band, despite the physical limitations caused by Progeria.
• 💼 Progeria's Impact: Progeria is a rare disease affecting only 350 children worldwide, with symptoms like tight skin, lack of weight gain, stunted growth, and heart disease.
• 🔧 Innovative Solution: Sam and his family worked with an engineer to create a lighter snare drum harness, overcoming the weight challenge.
• 🎉 Accomplishment: Sam successfully played the snare drum in the halftime show, showcasing his ability to overcome obstacles.
• 🌟 Progeria Awareness: Sam's story and his mother's scientific work have raised awareness about Progeria and contributed to its treatment.
• 😊 Positive Outlook: Sam emphasizes living a happy life despite the challenges of Progeria, focusing on what he can do rather than what he can't.
• 🤝 Supportive Community: Sam's family and friends provide a strong support system that helps him thrive and contributes to his happiness.
• 🎼 Shared Experience: Being part of the band allows Sam to connect with others through music, which transcends his medical condition.
• 🚀 Forward Momentum: Sam's philosophy includes always having something to look forward to and striving for a bright future.
• 🧠 Ambition and Change: Sam's career ambitions have evolved from engineering to biology, reflecting his growth and adaptability.
• 🎥 Documentary Impact: The documentary 'Life According to Sam' captured his life and philosophy, showing how his views have matured over time.

Q & A

What was Sam's dream before starting high school?

Sam's dream was to play the snare drum in the Foxboro High School Marching Band.

Why was Sam unable to carry a regular-sized snare drum?

Sam has a disease called Progeria, which makes him weigh only about 50 pounds, and a regular snare drum and harness weigh about 40 pounds each, which is too heavy for him to carry.

What alternative instrument did Sam play due to his condition?

Sam was assigned to play pit percussion during the halftime show, which involved auxiliary percussion instruments like bongos, timpani, timbales, and cowbell.

How did Sam overcome the obstacle of not being able to play the snare drum?

Sam's family and an engineer collaborated to design a lighter snare drum harness that weighed only about 6 pounds, making it possible for Sam to play.

What is Progeria and how many children worldwide does it affect?

Progeria is a rare genetic disorder that causes symptoms like tight skin, lack of weight gain, stunted growth, and heart disease. It affects only about 350 children worldwide.

What was the significance of Sam's mother's research on Progeria?

Sam's mother and her team of scientists published the first successful Progeria Treatment Study, which led to Sam being interviewed on NPR.

What was Sam's response when asked about the most important thing people should know about him?

Sam answered that he has a very happy life, emphasizing that despite his condition, he doesn't want people to feel bad for him and that he is able to overcome most obstacles.

What are the three aspects of Sam's philosophy for a happy life?

The three aspects are: being okay with what one ultimately can't do because there is so much one can do; surrounding oneself with people one wants to be with; and keeping moving forward.

How does Sam's philosophy help him deal with the challenges of living with Progeria?

Sam focuses on the activities he can do and the passions he has, surrounds himself with supportive people, and always looks forward to something, which helps him to keep moving forward despite the challenges.

What is Sam's current ambition and how has it changed from his childhood dream?

Sam's current ambition is to go into the field of Biology, possibly cell biology, genetics, or biochemistry. This is a change from his childhood dream of becoming an engineer or inventor.

What advice does Sam give about dealing with difficult times and maintaining a positive outlook?

Sam advises to not waste energy feeling badly for oneself, to be brave even when it's not easy, and to always have something to look forward to as a way to keep moving forward.

What is the title of the documentary about Sam and his family?

The documentary is titled 'Life According to Sam' and was filmed by HBO.

What does Sam suggest is the key to having a happy life despite obstacles?

Sam suggests that not wasting energy on self-pity, surrounding oneself with the right people, and always moving forward are the keys to having a happy life.

What is Sam's final piece of advice for living a happy life?

Sam's final piece of advice is to never miss a party if you can help it, emphasizing the importance of enjoying life's moments.

Outlines

00:00

🥁 Overcoming Progeria to Play Snare Drum

Sam, a 17-year-old with Progeria, shares his dream of playing snare drum in the Foxboro High School Marching Band. Despite the physical limitations caused by his disease, which affects only 350 children worldwide and results in tight skin, lack of weight gain, stunted growth, and heart disease, Sam was determined to participate. He and his family collaborated with an engineer to create a lighter snare drum harness, which allowed him to join the marching band. Sam also discusses the first successful Progeria Treatment Study published by his mother's team of scientists and his positive outlook on life, emphasizing that he leads a happy life despite the challenges he faces.

05:07

🤝 The Importance of Supportive Relationships

In this paragraph, Sam highlights the significance of surrounding oneself with high-quality people who provide support and companionship. He expresses gratitude for his family and close friends, who accept him for who he is and help him when needed. Sam also talks about the camaraderie within the marching band, which allows him to feel good about making music without worrying about his condition. He encourages the audience to appreciate and love their family and friends, as they play a significant role in one's life and can have a positive impact.

10:08

🚀 Keeping a Forward-Thinking Mindset

Sam shares his philosophy for a happy life, which includes keeping a forward-thinking mindset and always having something to look forward to. He discusses the importance of not dwelling on negative emotions and instead focusing on the future and personal ambitions. Sam talks about his evolving career aspirations, from wanting to be an engineer or inventor to considering a field in biology. He emphasizes the importance of bravery during difficult times and the role it plays in moving forward, as demonstrated by his experience during a hospital stay due to illness. Sam concludes by reiterating his life philosophy and offering a piece of advice to never miss a party, showing his commitment to living a fulfilling life.

Keywords

💡Progeria

Progeria is a rare genetic disorder characterized by the appearance of accelerated aging in children. The condition affects various aspects of the body, including the skin, growth, and cardiovascular system. In the video, Sam, the speaker, has Progeria and discusses its impact on his life, such as the inability to carry a regular-sized snare drum due to the disease's effects on his weight and physical strength.

💡Snare Drum

A snare drum is a percussion instrument that produces a sharp staccato sound and is commonly used in marching bands. Sam's dream was to play the snare drum in his high school marching band, but due to his condition, he had to create a lighter harness to accommodate his physical limitations, showcasing his determination and the support from his family and an engineer.

💡Pit Percussion

Pit percussion refers to auxiliary percussion instruments used in a marching band's performance area, rather than marching with the band. Sam was initially assigned to pit percussion due to his condition, which was a source of disappointment for him as it did not involve marching, a key aspect of his dream.

💡Happiness

Happiness, in the context of the video, is a central theme and philosophy that Sam shares. He emphasizes that despite his challenges, he leads a happy life and encourages others to focus on what they can do and surround themselves with positive influences. His outlook is a testament to his resilience and the power of a positive attitude.

💡Marching Band

A marching band is a group of instrumental musicians who perform while marching, often as part of a parade or a sporting event. Sam's aspiration to be part of the marching band, particularly as a snare drummer, is a significant part of his narrative, highlighting his passion for music and his determination to overcome obstacles.

💡Support System

A support system refers to the network of people, such as family and friends, who provide emotional and practical assistance. Sam credits his family and friends for their unwavering support, which has been instrumental in helping him navigate his challenges and achieve his goals.

💡Obstacles

Obstacles in the video represent the challenges and barriers that Sam faces due to his condition, Progeria. He discusses how he does not let these obstacles define him but instead focuses on his abilities and passions, demonstrating a proactive approach to life's difficulties.

💡Bravery

Bravery is portrayed as a key aspect of Sam's life philosophy. He talks about the importance of being brave during difficult times, such as when he was hospitalized, and how it is an essential part of moving forward and maintaining a positive outlook.

💡Moving Forward

The concept of moving forward is a recurring theme in Sam's message. He encourages having something to look forward to and striving for it, which helps in maintaining a forward-thinking mindset and overcoming adversity. This outlook is central to his approach to life and his happiness.

💡Identity

Identity in the video is about how Sam perceives himself beyond his condition. He mentions being secluded from aspects of his life that give him his identity when he was in the hospital. His identity is tied to his passions, relationships, and aspirations, which are independent of his physical challenges.

💡Philosophy for a Happy Life

This phrase encapsulates the core message of the video, which is Sam's approach to living a happy life despite his condition. His philosophy includes being okay with limitations, surrounding oneself with positive influences, and always moving forward with hope and ambition.

Highlights

Sam, at 17, has a dream to play snare drum in the marching band despite having Progeria, a rare disease.

Sam's weight of 50 pounds makes carrying a 40-pound snare drum logistically impossible.

Assigned to pit percussion due to physical limitations, Sam feels devastated but remains determined.

Sam's family and an engineer collaborate to design a lighter snare drum harness, weighing only 6 pounds.

Progeria affects only about 350 children worldwide, with symptoms like tight skin and heart disease.

Sam's mother's team published the first successful Progeria Treatment Study, leading to media attention.

Sam emphasizes living a happy life, focusing on what he can do rather than his limitations.

Sam's philosophy for a happy life includes being okay with what he can't do, due to the many things he can do.

Surrounding himself with supportive people is a key aspect of Sam's happiness.

Sam's band group provides a genuine sense of community that transcends his physical condition.

Keeping a forward-thinking mindset and having something to look forward to is vital for Sam.

Sam's ambitions have evolved from engineering to the field of Biology, inspired by role models like Francis Collins.

The documentary 'Life According to Sam' captures Sam's life and philosophy over four years.

Sam's younger self from the documentary reflects on his changing perspective on Progeria.

Sam's recent illness tested his philosophy but reinforced his determination to keep moving forward.

Sam concludes with the advice to never miss a party, embodying his positive outlook on life.

Transcripts

Transcriber: Bob Prottas Reviewer: Ariana Bleau Lugo

Hello everyone.

I'm Sam,

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.

(Applause)

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.

(Applause)

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.

(Video)

♫ Spider-Man theme song ♫

(Applause)

Thank you.

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.

(Applause)

Thank you.

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.

(Video)

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.

So,

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?

(Applause)

Thank you.

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 –-

(Laughter)

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.

(Applause)