This PKU Awareness Day I’m exploring the beauty of uniqueness and the profound impact we can have by daring to be different. Join me in aspiring to make a positive difference and embracing the power of our uniqueness in the rare disease community.
Dare to be Different on PKU Awareness Day
Today is a special day. It’s PKU Awareness Day in the US.
Now, on my podcast and this blog, I speak to the entire rare disease community. I try to share stories and ideas to inspire or encourage anyone living with or affected by a rare disease.
And while I certainly hope this message speaks to anyone in our community, today I am specifically thinking about my PKU community. So, please bear with me today, and know that although I frequently mention those living with or affected by PKU in this episode, this applies to everyone.
But even though it’s PKU Awareness Day, and I’m addressing my community, I’m taking a different approach to what I normally share on this day.
I’m not sharing information or statistics about PKU. I’m not even telling my story of living with PKU. Because I know that across the world our PKU community as one collective voice is telling that story.
What I’m thinking about today is why I’m involved in advocacy. Why you’re involved.
Why do we spend so much of our time focused on raising awareness of our rare disease?
What kind of life do we need to live to stay focused and motivated, and to live our lives well?
Two Stories, One Idea
I draw inspiration from many sources. Ancient. Modern. It doesn’t matter to me. If something rings true, then I’m drawn to it. If it’s true, it’s true.
If something rings true, then I’m drawn to it. If it’s true, it’s true.
I’ve mentioned before that I’m a reader. Mostly, I consume non-fiction… voraciously. History, philosophy, biography—those are just a few of my favorites because they are just stories about people… What they’ve accomplished, how they think, what drives them.
But I’m also a fan of pop culture—movies, TV shows, music. I can’t get enough. But just like with reading, it’s not just about entertainment for me. I choose to watch and listen to stories that inspire me.
So, today I’m thinking about one idea that appears in two stories, separated by about 2400 years.
One idea… shared by an ancient philosopher and the team behind an advertising campaign in the late 1990’s.
Plato’s Allegory of the Cave
Now, seeing the words “philosophy” or “philosopher”, many of you might like to stop reading. But hold on, don’t leave. I’m not going to share meaningless arguments that have no practical value. The word “philosophy” just means “love of wisdom”, and that’s what I’m exploring here.
This is a pursuit of wisdom.
And this first, brief story is from a philosopher named Plato. He lived in Greece over 2,000 years ago and is one of the most famous Greek philosophers.
In one of his works, he tells a story about a group of people who live in a cave. This story didn’t actually happen. It’s an allegory, or a story intended to teach a life lesson. As you can probably tell—if you have read this blog or listened to my podcast for a while—those are some of my favorite stories.
Actually, I think all stories do that. Some, like allegories, teach something in a direct manner. Others, it’s more subtle. But a story is just someone saying, “I think life is like this.”
Anyway, back to the story about people living in a cave. All their lives they’ve been in that cave. They’ve never been outside. All they know is that cave. The light that shines through from outside—it causes shadows in the cave. And those people living there, all they know—all they can perceive—is shadows. They have no concept of the light shining in from outside.
But then, one day, someone escapes the cave, goes outside, and for the first time—ever—they see the sun. They see water. The stars and the moon. They see the world through fresh eyes. They experience life in a totally different way.
They go back to the cave and tell others about what they saw. But those still in the cave don’t want to hear it.
They are happy… With life in the cave.
Apple’s “Think Different” Campaign
Now, let’s jump forward to the late 1990’s.
Apple released an advertising campaign called “Think Different”. This is over a decade before they released the iPhone. iPods haven’t even been created yet. At this point, Apple computers were used by creative professionals, but not widely used like they are today.
So, Apple launched this campaign to remind people that creativity is what changes the world.
There’s a quote that’s often misattributed to Steve Jobs. But he didn’t write it. He spoke it in a voiceover for one of the ads, but that’s it. This was written by a brilliant team of writers. And I think of this often as it relates to PKU, newborn screening, and rare disease advocacy. I’ll quote just part of the script, a portion that has entered our popular consciousness and is frequently quoted in books on leadership and creativity.
“Here’s the the crazy ones.
The misfits.
The rebels.
The troublemakers.
The round pegs in square holes.
The ones who see things differently.
They’re not fond of rules.
And they have no respect for the status quo.
You can quote them, disagree with them, glorify or vilify them.
About the only thing you can’t do is ignore them.
Because they change things.
They push the human race forward.
And while some see them as the crazy ones, we see genius.
Because the people who are crazy enough to think they can change the world, are the ones who do.”
I didn’t share that to give Apple free advertising. They certainly don’t need it! But this is old enough that the idea has become steeped in our culture. I’ve seen it quoted frequently over the years in articles and books on leadership and innovation.
And that’s the way I view advocacy. It’s innovation.
Collectively, we are the first generation of rare disease advocates who have had the power to spread a message—directly—without having to rely on traditional forms of media. For those of you who are younger, I’m sure it’s easy to take this for granted. But there was a time when we didn’t have the power to reach the world with a message just by typing on your phone, posting a photo, or sharing a video.
I know I’m dating myself here, but in my lifetime we have seen a revolution in technology and media that has given each of us the ability to share our story and discover the power of our voices.
And that’s a beautiful thing.
The Beauty of Difference
We have unique lives. There is no denying that.
Yes, I’m thinking about the PKU community today. PKU Awareness Day is like a holiday for us, like Rare Disease Day is for our entire community. Again, even though I’m focused on the PKU community today, everything I’m saying applies to the broader community.
However you choose to deal with your rare disease is your business. And never let me or anyone else make you feel ashamed or judged for how you live it.
Whether you live your rare disease life privately—which is absolutely your right—or publicly by advocating for rare disease awareness… It’s your life. Accept it and deal with it however you choose.
But I’ll never stop encouraging you to live it proudly.
Also, accept that your life is different. And whether you live it privately or publicly, that difference can be a source of strength.
That idea I mentioned earlier—the one that these two stories share—is that difference is good. That’s clearly the meaning behind the Apple commercial. But Plato’s story about life in the cave? It’s about the cost of that difference.
When you dare to be different, there is a cost.
Some people may not accept you.
But when you give your life over to an idea, a cause greater than yourself, the consolation is that you know you make a difference.
That’s true if you advocate in public, but also if you choose to live your rare disease life privately. Your existence is making a difference in this world. Because who you are—the unique experiences you have because of your rare disease—all of that makes up your character. And even if you keep your rare disease life private, all of the things that make you unique come out in your daily actions.
You are making a difference just by being yourself.
And the harsh, critical words of those who might discourage you, those who have chosen the comfort of the cave’s shadows over the radiance of the sun—those words lose their power. You understand your purpose. You are boldly embracing your uniqueness.
Difference Changes the World
And now, I want to say something to those of you who are involved in PKU advocacy.
Always remember that you are changing lives. You are making a profound difference in our community.
With every meeting.
Every speech.
Every Zoom call.
Every informal meetup.
Every conversation with a legislator.
Every fundraiser you launch.
Every conference you plan.
Every family camp you host.
Every post to social media.
Every film you produce.
Every conversation with a friend.
Every story you share.
You are changing lives.
And you do that by daring to be different.
Think different.
Act different.
Live different.
Difference is beautiful. Because difference changes the world.
You aren’t just involved in “PKU Advocacy”.
You are changing the world.
Final Thoughts
This is a special day for those affected by PKU, so I had to address my community. If you’re affected by another rare disease, I hope these principles help you as well.
If you found your way here and don’t know much about PKU, check out my Videos. I’ve posted a lot of my work there from over the years. A great starting place is the short film that changed my life years ago—”My PKU Life”.
What I explore on this blog and my podcast is hope.
Holding on to hope through the darkest times. For many of us, that can be directly related to our rare disease. For others, it’s unrelated burdens in life that we carry that have an impact on our rare disease experience.
I’ve said it before, and it’s worth repeating. We can’t separate what is going on in our lives from our daily rare disease experience. Our rare disease—and life itself—can be a heavy burden. And it can impact our mental health.
What I explore—continually—is the intersection of life, mental health, and rare disease.
It’s not the specifics of our rare diseases that unite us.
Ultimately, what unites us is our need for hope.
And our determination to never, never, never give up.
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