
About this episode
In this first recording of The Way Through podcast, Jodi shares how the podcast came to be, why it’s called “The Way Through”, and more about what the coming episodes will hold.
Transcript
Hi there, I’m Jodi Ettenberg, and this is The Way Through Podcast, where I talk about navigating life’s messy questions. This podcast has been a long time coming — a looong time coming — and I’m finally thrilled to be able to share my first episode with you all today.
When I turned 40, I wrote a piece talking about how the way out of despair was to actually intentionally move through it. At the time I was two years into a spinal CSF leak and staring down the barrel of a life that was really really different to the one that I thought I would lead. My plans for my business (and for my life generally) that I worked hard to build were just piled up in the corner gathering dust.
Instead, my day-to-day was this weird groundhog day where I would wake up, I would manage the pain of standing at the kitchen counter at my parents’ place and then go to bed again. And just rinse and repeat over and over and over. After a decade of living all over the world, the claustrophobia of what really felt like the teeniest, tiniest life was a lot to handle.
And it’s been five years since then. August marks my 45th birthday. It marks seven years with a chronic spinal CSF leak. Those of you following my story know that I’ve had four procedures to try and repair the leak and they just don’t hold. My life since then, since living at my parents, has changed a lot. My health is still a problem, right? My leak is still ongoing. But, I have been able to move out of my apartment. I now live semi-independently. I say semi because I do rely very heavily on accessibility changes in my apartment, like electric blinds, an electric patio door opener, those kinds of things. And I do have home care twice a week that allows me to maintain this level of autonomy. My leak, like I said, is ongoing. But mentally, my mindset is like a whole other world away from where I was then. I found joy again, and I’ve worked really hard to process the anger and the unfairness of everything that’s happened. And while grief is still ongoing, because every day there, of course, there are reminders, right, of what I can’t do and what I have lost, it’s really truly become second nature for me to reframe things and to focus on what I can do, what I still have, what I’m able to accomplish—even though my physical situation is still very hard.
I am bedbound most of the time still, and I’m in pain most of the time. I honestly, I don’t think I can remember what it’s like not to feel pain. It’s just an exhausting and constant companion, and it’s always there. But despite these things, I found this sweet spot between hope and despair. And in the next episode, I’ll go a little bit more into my medical journey. But where I sit right now is basically that medicine just has not evolved to treat the confluence of conditions that I have. I call it living in an onion of catch-22s. You know, something that helps one condition will negatively impact another and affect my baseline level of functioning negatively as well. So I’m just sort of in a position where I’m hoping that medicine will will one day evolve to be able to treat the things that I’ve got going on.
And for a long time, I really just lived in a place of desperation. You know, at those early days at my parents’ place, every morning I would step out of my bed with this breathless hope only to have the pain come crashing down as my brain sank into my brainstem because of that low CSF volume due to my leak. And my spirit honestly would crash with it. Every morning, I would be hopeful and then have this spiral into despair because as soon as I got upright, it was clear that obviously my leak was ongoing. When you have that level of ups and downs, hope ends up being a bit of a curse. It’s this really heavy place to live because progress wasn’t happening yet every morning I had this desperate hope that it could. And in putting all my energy into that desperate hope, I was blotting out anything else that could be good in my present that could be happening that I could focus on. Then after the hope kind of ran out, when I stood up, I just ended up drowning in despair and feeling like there’s just never going to be a way that I could get well.
In those early days of my leak back in 2017 I swung between that desperation and despair for many months and burdened my friends with messages about how little life held for me any longer it’s taken a lot of work but where I’ve netted out is somewhere between those two states of wretchedness, between desperation and despair. It’s a peaceful spot. It’s where I’ve actively chosen to lean into this reality of my present and find something joyful every day.
I have to be honest, though, in those early days when I first sustained my leak, this idea of reframing the present moment felt like quite frankly, pretty insulting. Why? Why would I want to see it for any good that the moment could hold when there was just so much bad in front of me? I was like, can’t people see how bad this is?! Why would I try and find something thing positive. I just wanted to drown in my own grief. And to make matters worse, we’re not taught how to grieve, right? In society, we’re just left out there flapping in the breeze. It’s such a universal thing to have grief, but society just expects us to manage it by ourselves and then snap out of it eventually. People are like, “oh, oh, you’re still sad?” Well, yes. Yes, I am still sad and joyful and angry and grateful, but also, yeah…yeah I’m still pretty sad. It always drove me crazy in living through these years, how society treats grief in this fundamentally reductionist fashion that helps everybody but the person who is actually grieving.
And grieving I was. At the beginning, I went deep nesting in grief. I was buying throw pillows and accessories for my unrelenting sorrow. And I’m not beating myself up for it. I mean, it’s totally natural. Life had completely changed overnight for me. There really was nowhere else I could live, it felt, but that place of shock and grief. But in doing so, on an ongoing basis, in living from a place of loss and from curdled anger and from sadness, I only made life more difficult for myself because not only was I living in that festering place, but I was creating this this deep tension with my present since I was unwilling to accept where I was. I didn’t want to accept that I’d lost that decadent life of food and travel. I didn’t want to believe that this had happened to me. And that tension between those two states was just this massive waste of my energy, bleeding out all of my brain juice into this endless abyss.
For me, learning how to let that resistance go, learning how to let that tension ebb away was really the starting block to begin to find my way through.
And the question I get is how? How did I start to do that? How does anybody find their way back to themselves, back to their heart, when life takes so much of what they love away from them? and that’s a big part of what I want this podcast to explore.
For me, seven years into being disabled, I’m better at accepting that this is where my life is. My life with a leak may be indefinite. It may be not. The medicine may evolve to help me eventually in a safe way. It may not. Right now, this is where I am. And I’m not lying to you when I say that I’m honestly okay with that. Objectively, people pity the life that I have, and I think they pity me. I can see it in their eyes. And I get it because I think I would potentially pity myself if I heard my story from the outside. But I really promise that I have found this place of contentment even in the face of all that mess.
A good friend of mine shared a beautiful Hindu proverb that goes, a baby is born with clenched fists and a person dies with their hands open. And when I heard it, I remember thinking like, this is the real challenge of life. This is the great challenge of life. How do we let go over and over again? How do we sit in the muck and the mess and the grief and continue to actively choose to let go? When I was in it, when I was in that endless grief place, I could barely see the light at the top of what felt like this dark, deep well. It just felt like there was no way out. And existing itself felt painful physically as well, but what I’m referring to is the mental anguish of this nightmare that I found my life in. That felt like it would never end.
And it really took active surrender on my part to trust that it might. That’s where I chose to start. It was that crucial first step of just laying down in that dark well, unclenching my fists and going, “okay, I’m here. It seems really dark. I can’t see any light, but it’s where I’m right now and I know that no matter how much my mind is lying to me I will not be here forever.”
We’ll talk more about surrender, I’m sure, in future episodes, but I want to clarify that neither surrender nor acceptance means giving upon getting better, though initially I thought they did. Those terms are not “for the weak”. They’re not for people who, “can’t handle pushing through”. There’s just so much vocabulary in chronic illness that talks about fighting or warriors, or heroes, it’s almost hard not to feel like something as basic as acceptance. Is too off-piste, or like you’re missing something, you’re supposed to be doing more. But it really is acceptance that is the fulcrum for that reframe, for getting to a better place. This is not going to be “the pushing through podcast”, you know what I mean? It’s The Way Through. And for me, the way through was to start with acceptance because of how aggressively I pushed away accepting that this is where my life was. It’s an active process. It’s a choice. But what it did was it let me stand more fully in my now, and I had to get to the point where I was willing to choose that because understandably at first there was just a lot of grief and shock and adjustment that had to happen. You know, it’s a much longer process. The evolution of this whole experience is a much longer ongoing process than it feels like social media or movies tend to portray.
Without getting to that acceptance, I couldn’t have fully turned to processing these knots of emotions that clogged up my being. And then without that processing, I couldn’t have moved into that active choice to also reframe. Surrendering, like I said, it’s this active decision. It’s me going, “I refuse to let my grief steal my ability to find gratitude moment to moment”. And then making that decision every single day. From there, I was able to make better decisions because I could make them from what is, not from what I wished it was or from what I was afraid it would be.
Michael J. Fox said, acceptance doesn’t mean resignation. It means understanding that something is what it is and that there’s got to be a way through it. I wrote this down because it resonated so greatly in my own personal journey. That’s why I’m here with you today recording this. I want this podcast to be a discovery of all the ways through the messiness of life.
I’m not an expert. I’m just a fellow human, but I’ve been through a lot. And together, I hope we can discuss the anger and the grief. We can learn and support each other in different ways to accept the present moment, to surrender to an uncertain future, and understand how to experience the roller-coaster of what it means to be human without out letting resistance feel that ability to feel joy.
Because I’m so unwell myself, this podcast is going to be a little different to many others. I’m going to try my best to get episodes out as I can, but likely they’ll be monthly or maybe twice a month. For the first season, I want to share episodes on topics that have been asked from many of you in my community, readers, people who’ve written in who themselves are going through tough things, discussing different parts of the human experience together and trying to find different ways that we’ve established tools and just ways through ourselves.
And then in the second season, what I’d like to do is interview other people who found their way through big life changes and understand from them how they found joy again.
My goal is: I hope that these episodes help you feel less alone. And if they have, then I feel like I’m doing something right!
So until next time, thank you for listening to The Way Through.
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Show notes
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