The Power of Sharing Our Stories (And not Being Fine)

Recently I was asked to share my story. On a stage. For 15 minutes. (Which if you know me, you know is a HUGE fear of mine).

And not just my widowhood story or my cancer story, but the story that weaves throughout all of it. From childhood and into my insecure teenage years - through my diagnosis and then Brad’s -  what is the theme that was present through it all?

The theme I kept coming back to? “Fuck Fine.”

I don’t talk a lot about what I went through before cancer (and more cancer and even more cancer) came into my life. I don’t talk a lot about the type of person I was before all of this “life experience” changed me. But here, I open up about how I went from a lifetime of “I’m fines” to “fuck fine” and WHY it’s crucial that we share our difficult stories.

Fulfillament is a live storytelling event where community leaders & entrepreneurs share their journey toward fulfillment through vocation that challenges them to COME ALIVE! I am so honored to have been chosen to share my story - and what brings me fulfillment - among so many other incredible humans.

Check it out:

 
 

Prefer to listen in podcast form? Check it out HERE.


Transcript:

When I was asked to be a storyteller tonight, I spent hours working on drafts - writing and rewriting - and I finally came up with something I was really proud of. It was touching and funny and raw and real. So I sent it to Chelsea to review and she told me something was missing. You. She said. You are what’s missing. 

Turns out I had written an entire speech about my own story and somehow left myself out of it.

Which, if you know me, seems about right. 

Because for a long time, I was afraid to be seen. I was afraid to have my voice heard. I was afraid to be on stage (that one is still true - this is terrifying).

I remember the first time I was on stage. I was fulfilling my mother’s lifelong dreams of becoming a ballerina. I had a pink fluttery tutu and tiny little satin slippers. But I lasted only one recital and by the age of 5, I had hung up my ballet shoes and retired. 

You see, before my first and only ballet recital began, all the kids would sit in the auditorium with our parents, watching the other performers, anxiously waiting for our group to be called to the stage.

So I’m with my mom and my sister, Margo, who is asleep in her stroller next to me, when my mom gets a page on her beeper (this was the 80s). She gets up and casually tells me that she’ll be right back. So I’m sitting alone with my baby sister, and suddenly, over the loudspeaker, I hear “little pink clouds, please take your place on stage for your performance.”

I froze. I was a little pink cloud. And I was panicked at what to do.

And this is the moment, at 5 years old, where I realized, there are two types of people. Those who follow the rules (and abandon their sister in the process). And those who speak up and ask for help. 

And there, in that auditorium, I knew: I was not one to speak up. I was a rule follower. And I’d rather risk my baby sister getting kidnapped and murdered than ask for help.

So I left her alone and took my place on stage like any good rule follower would, and told myself, “this is fine, this is fine, this is fine” even though inside I was TERRIFIED of the consequences of my actions.

My sister was of course not kidnapped, and after the recital, my mom asked me how I was feeling and - not wanting to burden her with my true feelings - I simply  said, “I’m fine.”

And that moment reinforced two things for me:

  1. a lifelong fear of being on stage - both the literal stage and the metaphorical stage

  2. the habit of saying I’m fine, even when I’m not

Childhood didn’t get easier after that, although you wouldn’t know it because I became so good at being fine.  My older brother struggled with addiction, my younger sister was beginning to test her rebellious limits, and my mom was married to a man who, frankly, should not have been a stepfather to anyone. This resulted in a lot of yelling and door slamming and holes in the walls. But me? I was fine. Because I had to be fine. Because not being fine meant creating waves and my role was to not rock the boat. 

So I got straight As, I joined all the clubs, I did everything I was supposed to do to convey that I was so clearly fine.

I was so fine that my mom eventually tricked me into therapy. She told me it was to take a college aptitude test, but I believe it was her way of having a professional attempt to break my stoic demeanor.

The professional could not.

I recently found the notes from that fake therapy session. Here’s what they said:

“Dana is not compelled to reveal much about herself and that includes demonstrating her intellectual curiosity to others. She is remarkably self-contained. Thereby, she is not inclined to try out her thoughts publicly.”

She was not wrong.

She also said that my curiosity about so many things in the world would make it difficult to find a focus in my career.

She wasn’t wrong there either. 

She suggested I attend a large university where I could explore many areas of interest. But because I was a stubborn teenager, and felt like this was the only way I could rebel, instead, I attended a tiny liberal arts college. And instead of declaring a major in Business, like my mom encouraged, I settled on a very practical degree in “English.” For no other reason than I liked to write.

While in school, getting a useless degree that would lead me nowhere, I met a very cute man, who - spoiler - would later become my husband. The very first thing Brad asked me when we met was, “what’s your story.” And by now you can probably guess that I did not tell him.

“I don’t have a story.” I replied.

But Brad was persistent. And unlike all the other people in my life, Brad didn’t accept my avoidance of the question. He wanted to know more. So he kept asking. Every time he would run into me on campus or at a party or in the dining hall, he would say, “Hey D, what’s your story?”

But I did not want Brad to know my story. College was a place to reinvent myself and I liked being fun and easy going and fine and my story made me complex and complicated and messy, things I did not want this new cute boy to know.

But Brad knew something then, that would take me years to recognize. And that is the power of our stories. Brad knew, long before I ever did, that these difficult things I’d been through were what made me introspective and empathetic and resilient. Brad wasn’t interested in the shiny, shallow version of who I was - he wasn’t interested in me being fine - He wanted the whole, messy truth.

Over time Brad’s persistence paid off - he tricked me into opening up and I tricked him into falling in love with me. We moved in together, we got married, and we were happy. 

Like the therapist predicted, I still didn’t know what I wanted to do with my life, so I bounced around a lot trying to find my passion. I worked in real estate and retail and communications and marketing and dabbled in entrepreneurship, never finding a place to land. But it was fine, right? I had a fulfilling marriage and fulfilling friends and a fulfilling life. Who needed a fulfilling job?

And then (there’s always an “and then”) I felt a lump in my collarbone and that lump turned out to be cancer. And suddenly spending 50 hours a week in a job that wasn’t fulfilling, didn’t seem so fine. And facing my own potential mortality at 28 years old, didn’t seem fine. Now, I was angry. And I wanted to be allowed to be angry. And because I spent so much of my life, not allowing myself to express my feelings, I really didn’t know what to do with that anger, except to write.

I dropped a whole lot of f-bombs on the page and shared my fears with the world (or the 10 people who subscribed to my very successful, now-defunct blog). At first, it was just therapeutic. A place for my feelings to go. And then something remarkable happened. Someone messaged me - another cancer patient who had found me online - and she said, I’m angry too.

And then I got it. When you share your story - your real story - it gives people the courage to share their stories too. And I realized in a world of “I’m fines” there were a whole lot of us out there who weren’t. And the more I shared, the more it opened up this space for others to share.

And I wish that was the end of my talk - go through hard stuff, share your story, don’t be fine, blah blah blah. But just because you stepped in shit once, doesn’t mean you won’t step in shit again. And 5 years after my cancer diagnosis, Brad was diagnosed with cancer as well. And this time it was terminal. And I was not fine. 

Life got pretty dark for us. Every week there was a new emergency. A mini stroke, a pulmonary embolism, distorted vision, complications from surgery, new tumor growth. We spent the majority of our time in and out of the hospital.

And on one particularly hard afternoon, in a plea of desperation, I told Brad we needed to figure out how to find some joy during this time. I was determined to stay positive (because figuring out how to be fine is what society - and my childhood - had ingrained in me).

Brad ever the realist, rolled his eyes and in his deadpan tone, said, “you want us to force joy?”

And I did. So we did. And from there, the seed for the Forced Joy Project was planted. But this time, with Brad’s unrelenting desire for the truth - it wasn’t about pretending to be fine. It was about acknowledging a glimmer of good alongside all that shit.

We started documenting these little moments: sing-alongs on the way to doctor’s appointments, belly laughs over medical supplies such as the “ass pillow,” Christmas lights and dance parties in our hospital room.

But in addition to all that forced joy, we shared about the other stuff too. The really hard stuff. Like what it was like to live knowing you might die. And what it was like to live knowing the person you love most might die. 

And 100 days after his diagnosis, Brad did die.

During his last days, Brad was his most human self, acknowledging both his joy and his mortality. And ultimately, that’s what the Forced Joy Project is about.

But before I came to that realization, I reverted back to all my old ways and told everyone I was fiiiiiiinnnnne. But not because I was or I wanted to convey this lie. But because I learned pretty quickly that’s what everyone else needed to hear. I learned that we live in a society that does not know how to handle grief. We are afraid of hard conversations. We avoid topics like sex and religion and politics and more than anything, death because we don’t like to be uncomfortable.

But death is uncomfortable. It’s also unavoidable. And after watching my 35 year old, beautiful husband die within months of his cancer diagnosis. I was not fine. Watching cancer eat away at his bones and his body, and eventually his mind. I was not fine. 

Fuck fine.

And once again, I went to the internet and started having the conversations I wished people were having with me in real life. And once again, I started getting messages from others who wanted to talk about their grief but, like me, had no place to go.

From all those hard conversations (and a little bit of joy squished in between), I founded the Forced Joy Project as an organization that supports grievers through resources and connection. It encourages people to share their difficult stories so that others know they aren’t alone. It’s a place where we normalize conversations about grief and loss and death - Where we normalize not being fine. 

We also educate those who want to support the grief community, but maybe don’t know how. Like what do grievers really want from those around them? 

For me? It was stories. And not just our own stories of loss, but stories ABOUT the people we lost. Because after Brad died, when people were offering frozen lasagnas and flowers that I would neglect and kill, all I wanted were stories about Brad.

And from that personal desire sparked another idea: the Book of Stories. These are custom memorial books that capture the stories of loved ones we’ve lost. And with each book I create, I get a glimpse into a person’s life. And they are not stories about being perfect that keep them up on some unreachable pedestal. They are hilarious and endearing stories about the full, imperfect, messy humaneness of a life lived.

Eventually, I started to force joy again. In the beginning, it was a rage session in a back alley in Detroit, where I took a golf club to a pile of glassware and old electronics. Then I started to dance (not on stage, but in my car and in my kitchen and with friends). Eventually, I moved to Northern Michigan and started taking daily dips in the lake (yes, even in the winter). All these little joys started to come back to my life and I was reminded that the Forced Joy Project isn’t about avoiding grief in order to find joy. It’s about the duality of both.

I never thought that 5-year old almost ballerina, who didn’t speak up and felt forced to be fine, would be here now, on another stage, sharing her story. That opening up to both love and loss would lead that little girl to find fulfillment, not just in her career, but in life too.

I thought what fulfilled me was sharing my story. But that was just a necessary step to let go of the fear of taking up space in this world. What really fulfills me is giving people the courage to share their stories. To give them the encouragement to not be fine.

When you talk about topics that others find taboo or uncomfortable, you are naturally creating waves. I don’t love having to talk about death. But I love the fact that when I do, it helps give a voice to so many other people’s stories. I spent a lifetime being suffocated by “I’m fines.” And now I get the privilege of encouraging others to let that shit go.

So my challenge to you is this: Speak up. Take up space. Share your story - and not the surface-level version of your story. But your real, complicated, messy story. Have the hard conversations. Rock the boat. And when someone asks how you are, don’t just say “I’m fine.” 

Fuck fine.