Jodi Ettenberg on living the granular life post CSF leak


Baiqu: Welcome to The Browser, today I'm with Jodi Ettenberg, who was once a lawyer, then a travel food writer, until she became disabled after a faulty lumbar puncture. Now she writes about resilience, curiosity, and loss on her blog Legal Nomads. Welcome to The Browser Jodi.

Jodi: Thank you so much. It's really a pleasure to be here.

Baiqu: It's so nice to meet you. Jodi actually used to work with us at The Browser and we've been emailing back and forth. But this is the first time that I'm getting to talk to her on video.

Jodi: Yeah, I was made aware of The Browser through Tyler Cowen, who is an ardent fan. He sent me a note many years ago asking me if I had heard about it saying this seems like your kind of people. It was really wonderful to work with the team. I'm sorry I had to step down. The bandwidth with my limitations was just too much, but I enjoyed it a lot.

From a globe-trotting travel writer to being bedbound

Baiqu: For the audience members who don't know, and who haven't read your blog, can you tell us what you write about and your journey over the last period when everything has been so turbulent?

Jodi: I think things have been different for all of us in this pandemic time. But for me, it happened a little earlier. I quit my job as a lawyer after five, six years in New York in 2008. Everyone either thought I quit because of the recession or they thought I quit because I felt like sticking it to "the man."

And it really was neither of those things, I quit before the recession really hit because I always wanted to go see Siberia and it was just this lifelong dream. I actually quit with another lawyer who was my opposing counsel on the last deal that I negotiated.

We left together and she did what we were supposed to do, which is go for one year, travel the world, come home and go back to being a lawyer. And I got waylaid by my love of what I was doing. It turned out, I love to write, I love to share the experiences in ways that hopefully help people think a little differently about the world, and I just never stopped.

I ended up getting freelance writing opportunities and then eventually speaking opportunities. Then my readers that I suddenly had out of nowhere, readers that were no longer just my mom, asked for specific things. I'm celiac, so it started with celiac translation cards. Then it turned into public speaking about the neuroscience of storytelling, and a whole bunch of other things.

My business was going great, I was really excited, living in Southern Mexico, when I ended up getting a lumbar puncture in New York. They used very large needles for someone of my size, which every doctor since has been absolutely shocked at the size of the needle they used. It gave me a post puncture drill headache, that's what they called it, but in my case, a CSF leak ensued.

It's been four years now, I've had four procedures to try and fix the leak, but it hasn't "stuck." I'm not the only one with this issue, turns out there are plenty of other people, despite being told it's a self-limiting condition.

Ultimately my life is very small now. I went from this huge life of travel that I built around a business I truly love to "I can stand a few hours a day." I can't lift anything, I can't bend or twist without really setting myself back and putting myself back in bed.

I was in bed for two years pretty much total, after the last procedure failed. But slowly I think my body is compensating a little bit with over-producing more CSF so I can stand a little more, but the leak is ongoing and there've been some other complications that make it much riskier to continue with surgery. So it's a very strange place to be.

I've tried to share as much as I can to raise awareness for this condition. I had never heard of this in my life before this happened. But I also think this shocking loss of all the things you loved at once is something many people can unfortunately relate to. Generally, life doesn't go the way we plan a lot of the time. So I'm honoured to be able to use my community platforms and be able to write and share, but it is not the life that I would have chosen.

Grieving loss

Baiqu: No, not at all. I think in many ways you were living a very unconventionally free life compared to what you would have been doing as a lawyer, and then to go from that kind of freedom of roaming around, working wherever, being a digital nomad.

Jodi: Before the term even existed.

Baiqu: Yes exactly. I can only imagine how much of a shock it was to not just go from the office to being confined in bed but to have built this life where you can be so footloose and then be completely bedbound.

During the pandemic, I think we've all had a small taste of what it means to not have control over your life, or not be able to make plans and to be confined within spaces. But for you at the time, it must have been so tough, for that mental adjustment to happen, and I'm guessing there was a grieving process as well?

Jodi: Yeah, I can remember the moment at five in the morning that it hit me when I had been reading about people who had complicated lumbar punctures like me. Small women who are petite with big needles, who just had never managed to stay sealed since. And it was years that they were still chasing this elusive feeling of being able to be upright without tremendous pain.

For months, I was in a very dark place and I don't think anyone wouldn't be. You know, someone told me "you seem really depressed." And I was like, would you not be depressed in my shoes? Not only, like you said, was it the loss of my work that I loved, but also this decadence of a life that I was able to work hard to build in an unconventional way.

Obviously, there's privilege. Born in Canada, got to go to law school in Canada without the school debt Americans have, got a great job out of law school in New York City. I went to law school at 18, everyone else was mostly older. It was a very unusual path from the beginning. My friends used to joke when this first happened – we all try and keep our sense of humour – at no point did anything I do seem normal so this of course is going to be dramatic and not normal.

The drama to me really comes from the humanness of it all. Anybody who suffers a tremendous loss needs to learn how to process it. And I consistently talk about the fact that you cannot try and just be positive about this disastrous situation unless you first manage to fully process the grief and the loss and the trauma of it all.

You know, it was a very aggressive night in my life. Crazily enough while I was at the ER, getting this lumbar puncture, the apartment I was cat-sitting for was robbed at the exact same time. So when I came back from the ER with a friend who was kind enough to help, we walked in and realised my laptop was missing, and so was a lot of other stuff. We had to call the police, I mean, it was just a crazy night that precipitated this entire unspooling of my life.

So I think during the pandemic my community, and even strangers that found my story by looking for terms on Google, have said they understand more about the limitations, the mental anxiety that comes with that lack of control by being in the pandemic and being limited themselves.

I think some of them also see what I see, which is that when the world gets back to normal, because of course, it will to some great extent, I will still be limited. I will still be in bed.

I think there are a lot of disabled people during the pandemic who finally felt like they were able to be a part of the social aspects of things. Now that a lot of people have been dealing with long COVID, I think there's hopefully going to be more discussion about disability and accommodation. It takes people getting hurt and being unwell to get there, but I'm hoping there is some progress on that front as well.

Losing friends and finding empathy

Baiqu: One of my best friends is disabled and I think during this time he felt as if everyone else was beginning to at least empathise a little bit with what it feels like. It is unfortunate that it takes a situation to be so personal until you can be understanding of what someone might possibly be going through, and what that might possibly feel like, and how to accommodate and be supportive.

Jodi: But not just this right, I think in any situation it takes that personal connection to have people rethink what unconscious things they've woven into the fabric of how they see the world and how they see life. In some cases, it's really unfortunate when it comes to the anger in politics when it comes to certain views. That's part of why I try and write, because if you can write a narrative in a way that is personal enough, maybe people will rethink the way they see the world.

I've been very, very lucky in the sense that I have no shortage of friends and family who have been really understanding and who have tried to get my point of view and see it from my view before COVID happened. But I know so many disabled people who don't have that. If this pandemic did manage to help them feel less alone, then that is certainly one silver lining in a really big mess.

Dealing with anger and the injustices of life

Baiqu: Does that ever frustrate you, or did it ever frustrate you that you couldn't get people to really understand what you were going through? Sometimes in these situations, people disappear or people drop off the radar. Did you have any anger around that? And about the situation in general?

Jodi: So I'll do the situation in the general second. But for the people in my life: yes. And I thought like, oh, these people are the people who if shit hit the fan, I would be okay because they would support me the way I've supported them. There are definitely some key people in my life who really disappeared or were angry at me that I wasn't better yet.

Sometimes it's a reflection of stuff that's going on in their own life, sometimes it's a reflection of their unwillingness to see that this could potentially happen to them one day. I was Jodi travelling the world, and then I was Jodi in bed, and some people can't handle the arrestingness of that contrast. But it's hurtful, it was very hurtful.

I can think of one friend in particular, who I spoke to all the time and I would consider a sister from another mister. We're just not in touch anymore and I did reach out and say, I feel like you're not supporting the situation and it's not like I complained about everything all the time. I really try not to, because that induces a more negative state for me.

So there are definitely people who disappeared, but conversely, there were people who stepped up that were more like acquaintances who became very close friends and really part of the bedrock of what has kept me afloat during this time.

I will say on the idea of, "are you frustrated that people don't get it?" It's really hard to get it. You know, I think of my life and I thought I was someone who was grateful. I was always so incredibly grateful for the life I got to build. I never thought to be grateful that I could tie my own shoes, I never thought to be grateful that I can open a drawer that's a little heavier.

These are the granular existence of this disability that is almost impossible to really just magically know. So I will say that people tend to understand a little more when I explain the granularity, but some people just really don't. They're like, well, why don't you just suck it up? It's just pain.

I'm in pain every second of every day. I definitely do things, like this interview, but it is going to take time for standing up that I will not be able to spend later on tasks like making more food. Everything is like an abacus. But for someone to just tell you to "suck it up," really steps away from the empathy that's needed. I've spoken to a lot of disabled people who get far more of it.

And to go back to your question about the anger of the whole situation, I think that's a very important one. And probably the most common email I've received from people. They're like, "you sound like you've really processed this, but I don't understand why you're not more angry."

And I remember when I did a 10-day vipassana meditation course in New Zealand. The first night there was this presentation and the discourse was basically anger hurts yourself first. You're corroding your own self from the inside out, and you're also projecting that outward. That really stuck with me.

When this happened, of course I was angry. It's so unfair. This is nothing I would wish on anybody. It's nothing I asked for that's for sure. But I basically spoke with a grief therapist, worked through the anger to get to a place where I can see, okay, this is deeply unfair, life is not fair. This is really shitty, but lots of people have really terrible things that happened to them. And they're good people, or they're bad people. It's still terrible.

This whole experience has taught me the nuance of really holding multiple conflicting things in one hand, and being able to parse through the sheer density of those emotions. To come out from there in a place where I can say, okay, this is really terrible and it's not helping me get better or feel better or face the day better to stay curdled by that injustice.

So I went through the anger when I went through the deep darkest of my grief. There are days where I certainly feel angry where it overwhelms me that something small I tried to do, I can't do. But the anger was something I had to actively choose to let go of in order to process through this and get to a place where I can hopefully help others handle life changes in a different way.

Reading recommendations: Viktor Frankl and Jon Kabat-Zinn

Baiqu: I think your case is obviously very specific, but it's also so universal, the sense of losing part of yourself, what you had dreamt of your future. As you said, you're dealing with chronic pain now, which so many people go through. I've read your blog and we're talking now, and I think you are so resilient. Is there an emotion or a feeling that you actively hold on to, or has stayed with you, which has been helpful in dealing with all the changes?

Jodi: First of all, if you had said to me, Jodi of 2010 or of 2014, could you have come through this the way I have?, I would have said absolutely not. We're all more resilient than we think.

There's something about the sheer weight of all of this. It's so much to hold that you have to just put it all down on the ground and sit there and one by one, pull up those threads and think about who you can be every day, and how you show up in the world despite this crap that you've been dealt with.

I think that resiliency is something that is an act of choice. It's a cultivation of choice, and that's sort of what I would stick to when I think of things.

People say you're so positive. I don't think I'm a positive person. I'm a lawyer. My brain is deeply socialised to find catastrophe ahead of time in everything. I was paid to do that. It's a choice, every single day, the practice of, I see this catastrophe, I choose to focus on something else. I'm not talking about delusion, I'm talking really about this deep decision that we all have every morning.

We all get to make those decisions. It takes a "living in the moment" that so many different philosophies discussed, but in practice, we're all too busy to put it into action. How much do we want to dedicate to our well-being in that way? To really open up that space inside that allows you to be more resilient, to be able to handle the vicissitudes of life that come at you and react to them in ways that make you feel good about who you are.

It gives them that agency back because it's there, it's a lie that it's not a choice. You get to choose how you react to every moment. And that is when everything else gets taken away, as Viktor Frankl says, you've still got that.

Baiqu: That's very true. I think that sense of agency is so important, isn't it? Because in a way, it's the only thing that we can control.

You're a writer, I'm sure you read a lot as well. Is there a book or an article that you've written or that you've read somewhere that you recommend?

Jodi: I definitely don't recommend my writing like that. It would be a little arrogant. I send my resources pages to people about CSF leaks. But in terms of the general population, things that have gotten me through this and helped bolster my learning process of this resiliency.

This all started when I got sick in 2013 in Vietnam with dengue and it ended up flipping the switch on genetic conditions I never knew I had. Those genetic conditions are a big part of why the leak is so hard to fix – that and the sheer size of the needles – also why there's so much that has gone wrong since.

So this friend of mine, before I knew any of this, recommended a book called Full Catastrophe Living Jon Kabat-Zinn, who's like the Western father of mind, body and mindfulness meditation. I think it was a really helpful read for somebody who is not yet in a place where they're as open to this present moment awareness. He really does a great job at talking about how stress affects the body, but also how the mind can exacerbate and make it worse.

And then Norman Doidge's book, I think that's how you pronounce his last name, The Brain's Way of Healing. It's all about neuroplasticity and the frontiers of brain science. And for me personally, every chapter is like a different condition.

That book was really a bolster during this period because it showed me these incredible cases where through discipline and dedication and being willing to try interesting things and how medicine has been advancing, people were able to improve. That book was really helpful for me to give me some hope. Not that my specific leak situation would have a solution, but that the body is so much more adaptable and can find other routes to whatever success looks like for you in this time.

My life objectively is probably not successful to people right now. This is a very small life. But to me, if I'm making a difference, when people are in this place where loss is so profound and the grief is just tearing them apart, if they can feel heard and seen and understood, then I wouldn't say this is all worth it, but the effort for me in doing all this is worth it.

Baiqu: I have to disagree with you there, Jodi. I think a lot of people would look at you and they would not say oh she's unsuccessful. I think a lot of people would look how you live, and maybe you've heard this a million times, but be inspired.

Your community I'm sure is supporting you, but I'm sure they also feel supported by you, right? Someone who's willing to put themselves out there, to open up and talk about the journey.

And when it comes to profound loss and grief, when people find you by typing in a specific thing and they read what you have been through, what you think, and how you've come through it, I think that's immensely helpful. In many ways, a lot of our jobs cannot touch people's lives like that.

Jodi: I think the stereotype or the rubric of what society deems to be a success – making a lot of money, leading a much more normal life as a human being. I mean, I feel like, with all the work I've done in the last few years, I am actually happier. I'm more at peace than I ever was, even while living this life that I loved.

And that's a testament to the amount of effort and time and working through the loss and the anger. And whatever stuff I had from prior to this happening that we all should work through at some point – which I initially said no to. I never travelled to run away from things, it was an active choice to run toward this life that I was building, But it was such a busy life that I was able to push away the processing of things that I probably should have processed through.

And when I was in bed ad nauseum, I said, all right, now is the time to work through this stuff. So I did get a therapist who specialises in chronic pain, in grief. We do EMDR. That I think has been the biggest life-changing aspect of this in terms of cultivating that resiliency, because it clears out the weeds of all this other stuff that I didn't process.

You know there was a time where I just stopped sleeping for months. It was really bad. It turns out it's something called mast cell activation disorder. And that's an inflammatory immune condition that is very common post virally that people are seeing with COVID as well, so I've written a resources page for that as well with all my research notes.

But I didn't know my insomnia was actually caused by my mast cells, which have a histamine dump in the middle of the night. Their circadian rhythm is most active at night. So that's why a lot of people with asthma or allergies tend to be finding them worse at night.

As I've said to many people, what I'm dealing with is where we'll get to eventually. All of us are temporarily able-bodied. Maybe it'll come earlier, like with me. Maybe it'll come later as we age, but this is something that everyone's going to have to relate to one day and I'm just there first.

How to cope with existential crises: curiosity as a way through

Baiqu: Paving the way for the rest of us. But no I totally agree. I think we are all going to get there at some point. Sometimes it feels crazy to me that even when you have a minor inconvenience in your body, you feel so frustrated. But as you were saying earlier, we all take it for granted that we are able to tie our shoelaces or to be able to open a drawer.

You talked about the books that you've read and your attitude through this whole thing. With everything that you've been through, I guess you've had many bouts of existential crises and I wonder, having had so much sort of happened to you, as such a young person, do you still have things that you're excited about and look forward to and how do you cope with existential crises?

Jodi: So it's an interesting question. I don't think my existential crisis or crises were unique to this experience. I'm pretty sure I have a lifetime of existential crises.

I think the way that I would see the world, anything that I inputted, like a sponge, would light up whatever existing information I had in my brain and would cause me to rethink the way I saw the world. Which to me was the joy. Like there is joy in existential crisis because it means you're rethinking things, which to me is always progress.

Even if it feels like it's not progress. Movement is movement and we should always be curious when something shakes things up enough that it forces us to rethink the way we see the world. Instead of being resentful, instead of being like, oh, I regret this, I wasted this. I think approaching a crisis with curiosity is a big ask and again, that comes after you process. Because anything else is just like covering it up, sweeping it under the rug, and then you're gonna trip over that lump eventually, and it's going to be not-pretty.

So process through, but as you come to these realisations, try to remain curious about what this says about yourself. You know, my realisation that I thought I'm a grateful person, I don't take things for granted. Only to realise, oh no I did.

My slogan for my site used to be "telling stories through food" for the last many years. I was looking at it and I was like, there is so much dissonance because I am not telling stories through food anymore. And this mast cell disease means I can barely eat the foods I love without reacting – the food aspect of things is another thing I lost in all of this. So I changed it to "curious about everything."

I think that slogan really does synthesise my mindset in getting through this. And the only way out is through. That's really it, you can't skip, you can try, but you're going to fall on your face eventually. The only way out is to process and to try to actively re-shift your mindset to a place of curiosity.

It doesn't have to be positive. I'm not like I love being sick. I'm not telling people to be Pollyanna here. But there is a neutrality that still is open, that still creates extra space, instead of constricting us in this negative and angry place. And the curiosity to me is that sweet spot where it allows you to have that space, but you're not painting this beautiful facade on this falling-apart building.

Baiqu: I love that. Curiosity as a way through. And I think curiosity as a way through life as well, to keep you interested, and to keep you wanting to know things, and do things, and to work within the confines of your limitations, whatever they might be.

Building communities and the joy of birds

Jodi: Yeah I think that's true, but also curiosity is a gateway to wonder, and there've been plenty of articles about how cultivating a sense of wonder or finding awe at something really goes a long way into putting us in a better place, mentally. Helping us through adversity.

When I had those phone calls with my readers, with my friends, I would ask them three questions. And one of them was, "how do you find joy? A childlike joy when you find that life has taken something you love away." And this was what I was struggling with at the time, and for me, part of that came in nature.

I never really talked much about birds other than the fact that I was shat on by 14 birds and one bat during my travels, which is unusual, a lot of birds. I have a small head just for the record. There are lots of theories in my family about why this happened, but you know, that was my bird situation.

Then when I started walking again, when that fourth procedure did work, you know, those eight months I was sealed. I was in Florida at my dad's place. He's a snowbird like many Canadians and he had all these Sandhill cranes, and it's an estuary, and I was just mind boggled at the birds. They were so beautiful and I would share them on Instagram.

And, you know, people were just excited with me, or annoyed, but they seemed excited. Everyone was happy to see the baby cranes. Then when I couldn't walk again after my leak re-opened, my community sent me thousands of pictures of birds. They would go on a walk and tell me that they saw this bird today, and they are sending it to me because I can't walk.

It was just such a beautiful exchange, but also they said, "I forgot that I could feel this kind of wonder at nature." It's a very childlike thing to be excited about feathers, but it really does put us in this state of awe that is so hard to find as an adult and so critical to getting through adversity.

Baiqu: Yeah, for sure. And that's such a beautiful story, I think having a community is so important. Especially when you go through a life-changing tragedy, you realise the importance of it even more. I always think of it as like a spider web, you have the people at the core, like your brother, you said, who comes to see you every week. Then your support network needs support networks, and you just have to have this web to catch you.

The day to day experience of a CSF leak

I wanted to ask you a final question, which is, after this interview, what does your day look like? I mean, we scheduled it in the morning because you said that you usually can do more in the mornings. But just to give people a sense of what the trade-offs are. What is this going to do to your day?

Jodi: Thanks a lot Browser. No, it's my pleasure.

First of all, it's better in the morning because CSF production in the body has a high tide and a low tide. So a lot of people when they talk about CSF leak symptoms, include a headache sometimes late-onset, like 4:00 PM and onwards.

If your leak is slow or if your body has adjusted, in my case, it was always the second I stood up. It's not a headache either. I mean, that's a very paltry discussion of what's happening. It really is this occipital crushing feeling of your brain descending into your brainstem because that's what's happening. There's a descent where the low pressure from your spinal fluid, that cushions the brain has been seeping out.

So in the mornings, though I have less of that pain, as the day goes on, it's my cognitive capacity that suffers. By the end of the day, I have trouble with word-finding, I have trouble doing basic tasks. People say can you take painkillers but it's a real mechanical problem. When I lay flat this all goes away. When I was sealed for those eight months, none of this happened. And yet, despite this, when my leak reopened, local care here in Canada told me I probably have migraines.

So for this day, because we did this early, I basically have to try and preemptively think of things. I made extra food so that I wouldn't have to cook a meal after this to eat today. I showered last night, so I didn't have to eat into more time of my standing ability.

But for the rest of the day, it will be a non-writing day or a non-working day because of the hour we spent standing up here. I also have to take account of the time needed to eat and everything. So when I say it's like an abacus, I'm just sliding beads all over the place – that really does feel like what my life is. It's just something I've gotten used to.

Another CSF leaker said something like "we as humans are so adaptable that we can convince ourselves everything's okay, even when it's not." And she's like, "there are times when I forget how much accommodation I've needed just to survive."

You know, I have had to get a little freezer because I can't open the drawer freezers, which are too heavy with the seal. So my brother takes things from the big freezer, puts them in the little freezer when he comes once a week. Those are just things I would've never thought of. To reach the hangers in the closet, I have a picking up device, like a grabber device. I have two in the house, which I use all the time, because I figured out when I was living alone, that when one fell, I was really screwed.

All this accommodation is great. But then I'm looking to move near my brother's because he's moving. The whole goal eventually is to find a place that's walkable to him, makes it easier for him and obviously it is just lovely to have him near.

I went to see an apartment yesterday and it was so deflating because I could not open the fridge. I could not get into the bathtub, it was too high, I couldn't step into it. Couldn't open the balcony door. The elevator was just so bouncy and I was just really sick by the time I got off. I got home and I was in tears because you think that you have made progress, but actually it's just accommodation that has made you think that.

It was a bit of a sad afternoon, but it's those kinds of things. This is my reality. Again, I took the rest of the day to feel sorry for myself. I'm allowed, we all are. But this is still the life that I have and me being upset about it is not going to change that.

Baiqu: Thank you so much for sharing that, Jodi. For everyone who's watching this interview, you can find Jodi on her blog and you have a Patreon I believe?

Jodi: My community was the one who for months was like, please start a Patreon. And I just felt I can't give the kinds of things most Patreon creators can. And they said we just want to support you. We want to thank you for all the years you answered all our emails and helped us. So I started it. And what happened is it went from a support Jodi Patreon to a place that people ask all the questions they had about chronic pain. And I do AMA videos. I just did one and for the next one, I already have 36 questions.

But it makes me feel good and it hopefully seems to help them as well because everyone either is in pain or definitely knows someone who's in pain. The more we can demystify, the more we can take that gulf of misunderstanding and make it smaller.

Baiqu: Definitely. Well, thank you so much, Jodi. And to your community who I'm sure will be watching this as well. They sound amazing. Thank you so much for your time. It was really lovely talking to you.

Jodi: You too. I appreciate it.


@JodiEttenberg

Jodi's blog: Legal Nomads

Jodi's Patreon

Full Catastrophe Living by Kabat-Zinn

The Brain's Way of Healing by Norman Doidge

Self-Compassion by Kristin Neff

When Things Fall Apart by Pema Chodron

Man's Search for Meaning by Victor Frankl

Lumbar Puncture: https://www.legalnomads.com/spinal-tap/

CSF leak: https://www.legalnomads.com/spinal-tap/

Chronic pain: https://www.legalnomads.com/chronic-pain-explained

EMDR therapy

Mast cell activation disorder: https://www.legalnomads.com/mast-cells


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