You’ll recall I’ve turned to high waisted pants these days. I don’t move as quickly as I used to. And I’m starting to embarrass my kids.
I really took a turn when I entered law school. From there, cautious paranoia took over, because the whole world was a tort waiting to happen. And then suddenly in practice, humanity became too flawed and impossible to let loose around.
I think it goes way back to even my younger days. I enjoyed parties and raising some hell, but in one of the most moderate and well-planned-out ways a youth can accomplish a wild side.
But I had a little time to rethink it all during a long trip home from Durham, N.C., in early March. Sean and I traveled southeast to participate in the Florence Forth, a road race to benefit the Autoimmune Encephalitis Alliance, in honor of Florence McDow, who died of AE at only six. And on the way back, our plane needed to wait for fuel, and a pen and paper (I don’t kid) which turned a 5am to noon day of flights, into two days of planes, trains, automobiles.
The trip was amazing. It was the first time we traveled together in three years. The last time was flying to Mayo. So really, it’s been a long time since we left home in search of “fun.”
While in Durham, I had the enormous pleasure of meeting Leslie McDow, one of the two co-founding couples of the AE Alliance and Florence’s mom. And I got to feel like I was contributing to Florence’s memory and what she means to my community. I also had the honor of repeatedly hugging Dr. Helen Egger, another one of the co-founding couples, who was also on my podcast, and is someone I deeply admire.
I felt such pride, when my new friend, Alison, saw me and just beamed, and we got to have many hugs and beautiful conversation. When Alison heard Sean and I were going to attend, she drove in from Atlanta to join the race and meet us. Alison is now the third AE survivor I’ve met in the flesh. She’s amazing. She told me of a few AE-related issues she experiences, but kept saying, “It doesn’t matter. I’m still here.”
Isn’t that the truth.
Sean and I spent the day on Duke’s campus, one day before Coach K’s final game. The place was electric. And then there was Meg, our new and dear friend. Sean and I kept piling in her car to laugh all the way to our events and dinners. We joked until we began to question our sanity or earlier bedtimes. And Caterri allowed us to a nice dinner of AE Alliance folks, even though I was rooting for Duke over her beloved UNC.
I can honestly say that for the first time in a long time, I felt fun. To have it and know that I can be it.
The reflections during that long day in the airport were many. Mostly, how the weekend all happened for me. How I could come to embrace this new world and role I have, within the AE community. It didn’t come easy, nor did it come with instructions.
It arose from me taking on risk, and embracing that old wild side. Resurrecting a person who could throw caution to the wind and go like hell in a scary new direction.
I took a chance on sharing my story with as wide of an audience as possible. I risked starting a podcast, when I didn’t think it was my thing. I tempted fate by putting words on paper.
I said a prayer over my computer when I delivered a memoir to a publisher, realizing I was asking someone to take some of my most intimate moments and literally circulate them to the world. I wondered if my story was the right fit for practicing lawyers when I queried the American Bar Association with an essay.
I took a chance by chasing down a few notable psychiatrists, scientists, and authors to join me on Brain Fever. Took a leap on a Monday, that I could maybe interview Susannah Cahalan or ask her to read my book.
I ran on faith when I started JM Stebbins with no formal plan. No money. No goals. Just me in an LLC, with a lot of ideas. I decided I was going to start over, and that was the vehicle to do so.
I put my name and person out there, for everyone to see, and owned seizures, cognitive impairment, a stay at the psychiatric ward, and more. I said I would write a book about it, and I did. I said I would speak about it, and I did. I didn’t shy away from others’ reactions. I laid claim to the authenticity of me and my story.
I took a chance on myself, and a risk with you. That I would be my whole self, flaws and all, and that you would allow me to be exactly the person I am. I risked allowing the world to see me grapple back to life in my own way, on my own time. Triumphs, defeat, and all.
I may have played it safe in life leading up to AE, but that’s the old Jackie. This one allows an audience while she navigates the seas of uncertainty. New-Jackie is in search of experiences and fun, and has new friendships one could only dream about. She’s open and willing to be vulnerable, but she does it with confidence. She’s absolutely out there and feels unstoppable.
With no time to waste, she’s grabbing every moment. And sink or swim, she’s going for it. She’s decided to take her chances every chance she gets.
Thanks AE. Thanks for that.
And thank you, for taking a chance on me.
Now some people say that you shouldn’t tempt fate And for them I cannot disagree But I never learned nothing from playing it safe I say fate should not tempt me
I take my chances I don’t mind working without a net I take my chances I take my chances every chance I get
I’ve crossed lines of words and wire And both have cut me deep I’ve been frozen out and I’ve been on fire And the tears are mine to weep But I can cry until I laugh Or laugh until I cry So cut the deck right in half I’ll play from either side
I take my chances
Yeah, I don't cling to remorse or regret I take my chances
I take my chances every chance I get ~ I Take My Chances by Mary Chapin Carpenter