Who Am I? We all think that from time to time. My answer: I am more than a PKU advocate. This article is a reflection on identity and purpose.
Reclaiming My Identity: I Am More Than a PKU Advocate
Hope. Relentless hope.
That is what I believe in. Or at least, I try to remind myself of it every day. And I have needed that reminder these last few months.
I created this site in 2022 because I wanted to explore the relationship between PKU and mental health. Then I created my podcast, and expanded my focus to the broader rare disease experience.
The first episode was called “Regaining Hope: My Journey to Rare Disease Advocacy”. And there’s a quote from it that I’ve been thinking about a lot recently.
“When you’re living with any chronic or rare disorder, it can get overwhelming at times. But we also have things going on in our lives besides just our rare disease. How do we separate what is going on in our lives from the daily experience of the rare disease lifestyle? We can’t. And we need to start talking about how we deal with everything that is happening to us, and how our rare disease is related to all of that.”
That was the original foundation of this site. It was an exploration between PKU, newborn screening, and rare disease life… and mental health.
A lot has happened these past few years in my life. And I’ve realized that if I want to continue writing for this site, then it’s time to go back to the beginning.
I Have Been Wrong
Life has been a whirlwind these past few years. Over time my priorities became unbalanced. And then I went through another long dark night of the soul. I have been coming through to the other side recently, and it is liberating.
And here is what I am realizing… I have been wrong. So very wrong. About so many things.
I pursued advocacy as if it were the most important thing in my life. It isn’t. The people in my life. They matter most.
I over-committed my time and energy, and then burned out. Hard.
The advocacy world is a diverse community. We all have different skill sets, different views on what we think is best for our communities. And I have allowed what others think of me drive my actions.
So I am returning to the thing I do best—tell stories.
I am a storyteller.
But in the past, while pursuing stories I passionately believed in, I got tunnel vision and did not remember that we are all going through things in life. Some of us can’t even think about advocacy because we’re just trying to make it through the day.
I have been reminded of all of this while I’ve been going through my long dark night of the soul. And I have accepted that it is time for me to change.
The New Purpose of PKU Journal
The original tagline of this site was “Life. Mental Health. PKU.”
Then I branched out and explored issues related to PKU, newborn screening, rare disease, and mental health advocacy.
But it’s time to simplify.
PKU Journal is now a collection of stories and reflections on life from someone living with PKU.
I am still reflecting on this, and perhaps I’ll share another article in the future about it, but I simply can’t let advocacy define me anymore.
Over the years, I’ve spoken with many people who are intimidated by advocacy. They think they have to create organizations, or fight for legislative change, or even make media appearances to be an advocate.
I have tried my best to communicate what I think advocacy really is.
Advocacy is just sharing your story. It begins with advocating for yourself or the one you love. And maybe you do it long enough that you find yourself living out the full meaning of the word “advocate”.
An advocate is someone who makes a stand for what they believe in or someone who speaks on behalf of another.
But…
What do you do when you can’t speak up anymore? What do you do when you don’t have the strength to fight for others? When you can’t speak for yourself anymore? When life is happening to you, and you are just trying to make it through the day? Or trying to hold on to hope, moment by moment?
That’s what’s happened to me these last few years, as I have endured multiple deaths in my family. And I’ve also been coping with extended and severe illnesses in the family.
So, what happened when I could no longer advocate?
For me, my identity came crumbling down.
Re-Thinking My Identity
None of us are one thing and one thing only.
Identity is a complex thing. We are human beings, and cannot be reduced to one dream, one desire, one state of being.
But I find myself increasingly critical of society. Especially common approaches to social media. Algorithms want to reduce us to one thing, and one thing only. So we tailor our social media presences to one identity, and hope that the algorithms show favor.
We reduce our message to one thing, and one thing only, and we rob ourselves of the gift of complexity. Of depth. Of humanity.
I’ve been an advocate for a long time. As I write this, my journey began 14 years ago. I burnout every so often, but eventually come back. But in those seasons of stillness, I take time to rethink everything. And I mean everything.
How am I spending my time?
What am I thinking about?
Are my actions aligned with my beliefs?
In my passion, am I developing tunnel vision, and becoming intolerant of others?
Am I being a person of peace and tranquility?
Or am I spreading chaos and rage when life doesn’t go my way?
This isn’t about compiling a list of wrongs and then chastising myself for my failures. It’s about health. Physical, mental, emotional, and even spiritual health. Am I living well? That’s what I try to ask myself, as much as possible.
I’ve used the metaphor of fighting a lot these last few years. Of resilience. It’s all over this website. Stories like “Never Out of the Fight.” Or “Why We Fight.” Or “Never, Never, Never Give Up.”
These weren’t slogans to me. It was a way of life.
Well, I can’t live that way anymore. It’s exhausting. I’m trying something new going forward, for the sake of my mental health. To take care of myself so I can be there for those who need me and love me the most.
From here on out, I want to live in peace.
To be at peace with myself and those around me. To let go of the things that might fuel anger or resentment. That is the freedom I seek. It’s a kind of freedom that withstand any storm of life. A firmness of knowing who I am and what I stand for, combined with compassion and mercy towards those who disagree.
There are endless voices out there telling you how you should live. But ultimately, that’s a decision you must make for yourself.
As for me, I am choosing a path of peace. And I am walking a path that considers the collective experience of humanity, and I am trying to learn from that wisdom. And I am learning that resilience is not about fighting. It’s about endurance.
Resilience is forced upon us. Often we don’t know what we can handle until it’s time to handle it.
But ultimately, resilience is not about what you do. It’s a character trait. It’s something you are. You are resilient. What matters most is not how many times you struggle, or how much you want to give up.
It’s that you keep getting back up.
I Am More Than A PKU Advocate
I have been sharing my story with the community for a long time. And I’ve told many stories about others I’ve met on my journey.
But there’s one thing I need to say, at least for my own sake.
Social media is a great tool for connecting with others and spreading a message. But one consequence is that our society has become much more image-driven.
And I easily fall into the trap of feeling like I’ve got to put on a show. That I have to project an image of strength and resilience when I’m struggling just to make it through the day.
I have been traveling the world and advocating for the PKU community for over half of my career. I consider it my second job. But it’s more than that. I can’t explain this, but I consider it a calling. The work I am here on this earth to do. The work I have devoted my life to. It is part of my purpose.
And when you do something like that for long enough, it becomes part of your identity.
My mistake is that I began putting PKU advocacy ahead of a simple fact that I can’t escape.
Ultimately, I am someone living with PKU myself. I have struggles. I have questions and concerns, especially about mental health issues.
And before any of that…
I am a human being.
The purpose of PKU Journal has always been to explore life issues that we generally don’t associate with PKU. Or newborn screening. Or rare disease life.
But going forward, I’ve just got to simplify.
I write stories and reflections on life, and hope that something I have to say will help you on your journey.
I am here to write. That is what I can do. I can’t commit as much time to campaigns as I used to. But two things are true…
I will always be a member of the community. And more importantly, I will always be a friend.
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