When Times Get Tough, I Live Out Loud
By Casie Shimansky
I don’t remember much from the life I had before April 10, 2004. I just know that my sister was here, and then gone. And ever since, it’s felt like there have been two parallel universes of my life — one, where she lives. The one where, if I close my eyes tight enough, I see her on the beach. I can hear the waves crashing on the shoreline. I can feel the warmth of the sun. I can almost reach her — before being sucked back to reality, to this life. The one where we lost her.
My sister didn’t die from children’s cancer. It’s a common misconception. People hear that I’ve lost a sister, they see my dedication to the St. Baldricks Foundation, a charity dedicated to funding research for kids’ cancer, and they do the math.
Except, their answer is never quite right.
Kellie died from unknown causes at age 18 — and, yes, that sounds just as weird to read back as it is to live it. She was young, healthy, athletic, and vibrant — and within a week, she was gone. It never made any sense, but we essentially lived an episode of House. Except, in our case, Dr. House never showed up to rescue her from the unknown ‘thing’ that entered her body before it caused multiple organs to fail her.
But, if you asked me, it almost doesn’t matter.
She’s gone, and there’s nothing that will change that.
We all grieve the loss of something — of someone. And for me, every day since April 10, 2004, it’s been her.
I was just a month shy of 21 on my very first morning without her. And even then, even as broken and confused as I was, even struggling to know what ‘forward’ looked like — I knew there was only one thing I could do at that moment.
I had to live out loud.
I get asked a lot what ‘live out loud’ means — and I strongly feel it means a little something different for everyone. It took me years to learn what it truly meant for me, and it wasn’t easy. But it kept me focused when things got too difficult, too painful, too — “How do I do this without her?”
At first, it was just getting out of bed and getting dressed. Then it was going back to work and my classes — the ones I used to have with her.
Over the years, ‘live out loud’ became leaving toxic situations, bad jobs, and things I knew weren’t meant for me. And, in its own time, ‘live out loud’ grew into falling in love, finding work I loved, speaking up and stepping into the spotlight (even though I’m an introvert), laughing louder than I’ve ever laughed, and surrounding myself with people who encouraged me to not just survive — but thrive.
In the chaotic midst of re-establishing my life, the stars aligned when St. Baldrick’s found me. I thought I was showing up to photograph “just another fundraising event” that day in 2011. What I found, was a home. St. Baldricks gave my grief a place to go — and something to fight for.
Lead Photographer. Team Captain. Shavee. Top Fundraiser. Children’s Cancer Research Advocate. The girl who went bald just two days after her wedding.
They’re all titles I’ve proudly worn thanks to St. Baldricks.
That’s what happens when you capture bald head, after beautifully bald head, through your lens year after year — the cause captures you in return.
It’s oftentimes not easy work. A few years ago, we lost three kids in a week to cancer– and I was a mess. Heartbroken and defeated, when you thought you were strong enough to stand and breathe again — another loss would knock you off your feet.
I take each loss personally. It brings me right back to the moment we lost Kellie. The moment my parents lost a child. The moment my youngest sister and I lost a lifetime with our “middle piece” — that Kellie wouldn’t be there for graduations, birthdays, weddings, and random Tuesdays.
It’s hard not to take that personally, that I’ve somehow personally failed those families. That I didn’t scream loud enough. That I didn’t ask 10 more people for five more dollars.
What if that $5 would’ve been the donation to change it all?
And I get asked frequently, “Why? Why do you keep doing this? It’s so sad!”
The response is easy. It’s not easy work. It’s often not ‘happy’ work. But it is NECESSARY work, and so…that response is easy.
If I walk away simply because it’s sad and it hurts and it brings me back to a moment of loss in my personal life — then nothing changes.
Then we don’t SAVE anyone. And THAT’s worse.
I don’t want any family to endure what mine, and so many others, have. I can’t bring Kellie back, but perhaps — I can save others.
So, any time I get tired or have that wave of defeat hit, I let myself feel it — but I also make sure that it refuels me. That I remind myself why I started. Rest is important. It’s the thing that helps you get back up and climb that mountain.
I know I can’t end kid’s cancer alone — hell, I scream that from those very mountaintops every year as we fundraise. I cannot do this alone. It takes ALL of us.
It takes those $5 and $10 and $25 donations — THAT’s a community coming together for change. And I’ve seen how powerful that is — because most of the donations I receive are $25 and under.
This says to me, that when A LOT of people care a lot and give what they can — we can effectively create the change we know we need for kids’ cancer.
It’s that energy that keeps me going — that leaves me knowing that we WILL end kids’ cancer.
And that, to me, is the very spirit of Live Out Loud.
To learn more on how you can ‘live out loud’ for kids with cancer, visit StBaldrick.org.
