While out of town to give a speech, I met an old friend, Peter. He’s truly one of my all-time favorite lawyers and a dear friend. We hadn’t seen each other in years, because, well …
Peter’s been very supportive, and had a lot of wonderful stories to share with me about Unwillable and how my story inspires him. I was honored and flattered by his feedback.
And then he pointedly asked me a question. It wasn’t a complicated question. It didn’t have any hard words that left me struggling and he didn’t ask me to solve any current crises. He simply said, “Jackie, I know you’re big into living in the moment, but what are your short-term and long-term plans?”
It was as if he asked me for the circumference of the earth multiplied by the depths of the ocean divided by Elton John’s private phone number. I mostly stared and stammered in reply. In the spirit of trying to move along the conversation and not look like I had the wits of a post, I must have said something, but I didn’t really answer him.
It’s because I don’t have an answer.
I have a lot of canned replies and info I share at the right moment depending upon who is asking. If it’s nonchalant, I don’t say much and smile. If it’s deeper and comes from a close friend, like Peter, I’ll answer in more detail and honestly.
I wasn’t avoiding it, but more than ever, on that night, I really drew a blank.
I was also suffering from crippling exhaustion. Just when I think I have an ounce of normal behavior for a 39-year-old woman, I’m easily derailed by a few nominal events. It doesn’t take much to tip me from my already hypersomnia-induced state, but when I do, all bets are off for critical thinking.
I’ve been mulling over Peter’s question and my (lack of an) answer for weeks. But in all reality, I’ve been contemplating the answer to this question in its various forms (what next? what are your plans? will you ever return to practice? what do you do all day? what are your goals? why is the Unwillable soundtrack epic?) internally, repeatedly, for years now.
True to my nature, my thoughts to answer this question are wild. They’re nuanced. They’re not easy to arrive at, yet usually connect at the end. But mostly, they’re a lot of the lawyerly answers of “it depends.”
Don’t get me wrong, I’m super happy with where I’m at now. I feel like I’ve finally mowed down enough weeds that I have room to walk and explore without tripping. My existential crises of who am I now, did my illness change me, are more subdued. My health is a somewhat constant battle, but it seems to be a constant I can maneuver and cope with.
The abstract something I decided to make out of nothing, with the help of my family and so many friends, now feels like a well-oiled machine. The podcast is performing in 43 countries in almost 800 cities. (Still feels nuts to say that.) The blog is the best therapy I don’t pay for, with the sole purpose of highlighting humanity through its joyous highs and grievous lows. This year alone, Unwillable took me from coast to coast: NYC in April and San Fran in September.
My day-to-day is full of people from all walks of life looking to me for hope, an ear to listen, and a boost of support.
I’m reading so many books. I’m constantly up to date on politics, life, and tech through the Pivot and On podcasts. I’m immersed in literary and feminist Substacks, business and entrepreneur newsletters, writer blogs, lawyer memes and videos, and interesting takes on community building. I gave myself a Master’s in keynote speeches. I learned how to make TikToks and joined the #booktok community. I’ve read books on law school and med school for my next book (on … law school). I’ve got a TBR pile about blogging, podcasting, journalism, and always, memoirs.
I’m enmeshed in a world that I cannot define. It’s a world that I’ve come to love.
Does this world satisfy my short-term needs and day-to-day aspirations to feel productive, independent, wise, witty, healthy mentally, and be a good role model to my children? Yes.
Is this world one I can sustain for my health? For the most part, yes. However, as evidenced by that last out of town speech and my medical appointments shortly thereafter, and a few different lectures on sleep and anxiety, it’s always going to be a balance. And the scales of healthy Jackie tip in favor of sleepful Jackie. Which limits me.
But in the long-term, the question gets harder to answer.
Is this a financially lucrative path like the practice of law was? No.
Is this way of life amassing retirement? No.
Will my health magically be better so I can enjoy bucket list-type plans? The ones you’re thinking about this very moment that involve miles of walking, hiking, cliff diving, eating whatever that isn’t obsessively Celiac safe, backpacking on your healthy shoulder through Europe, taking a sabbatical from your career, running for office, fixing up an old house … Probably not.
How far can I plan into the future? If the past is the best predictor of the future, not very far.
Do I want to plan far into the future? No. I planned for life as far back as I can remember. And worked relentlessly. So much so that I feel like all the aphorisms lied to me: Always give it your all, the late nights are worth it, push through an extra mile, the only thing in your way is you, work harder than everyone around you, if the other guy takes a break and you don’t, you win, second place is first loser …
Can I scale what I’m doing? It depends. On a lot. And quite a bit of it is out of my control.
Have I started to get a little weird and hoard my long hair, procrastinate, and only agree to spontaneous events? More than I care to admit.
Do I still have dreams? Yes. Do my dreams have to be somewhat tempered by the years of work I’ve put into acceptance? Yes. Do I have goals in my mind that I’m afraid to admit aloud for fear they’ll backfire and I’ll be left in ruins again? Hard yes.
Are there times when I dream of a future where I’ve broken through all the chains that bind me? You bet.
Have I ceded control of my future and life quite a bit because of my emphasis on acceptance? More than desired.
*This is my friend, Peter. But I also call him Judge Welte. He recently took the bench and is now the presiding federal judge of the District of North Dakota. Sometimes I cannot believe I have the good fortune I do to have such cool friends. He’s as humble as he is wonderful. If he knew I was posting this, it’d probably be titled Garth Brooks’s “I Got Friends in Low Places.” Ha!*
As I reflect, maybe I did answer Peter’s question. Possibly “it depends” is the best answer I can give. Coupled with some long-winded and flowery I love my life now, but am open to what comes my way.
But the good news is that for probably the first time in my life, I don’t know what’s next. And also new to me is the belief that I’m actually OK with that.
Because drawing a blank on what lies ahead means I keep writing my story as I go. And if the past is the best predictor of the future, I seem to have a knack for it.
Cheers to working within your blank space.
“So it's gonna be forever
Or it's gonna go down in flames
You can tell me when it's over, mm
If the high was worth the pain
“They'll tell you I'm insane
But I've got a blank space, baby
And I'll write your name” ~ Blank Space by Taylor Swift
/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /