ON TURNING 40 WITH AN ANCIENT HEART

FEAR AND ANXIETY, HEALTH ISSUES, PERSONAL MUSINGS, WELLNESS

In February, I realized that I was no longer sleeping well. On the rare nights that I did rest, my tracker said I went into only 20 minutes of deep sleep a night total. Plus, the hours of light or REM sleep that I did have were punctuated with awful nightmares.

After a particularly rough stretch of ugly darkness, my friend Naomi asked to chat one night before bed. I slept soundly for the first time in months. In the morning, I couldn’t believe my eyes when I saw that I had one hour and fifteen minutes of deep sleep. In the shower, where all good ideas derive, I decided to ask for some help and see who would want to have a nighttime call with me to help me sleep better.

Worried it was too hokey, I texted my brother as my brain-check.

“Are you kidding!?” he exclaimed. “Everyone feels helpless in this mess. Give them something to do.”

He was right.

I put up a short sign-up sheet on my personal Facebook page on February 13th, and by the end of the day I had a call booked every single night, all the way until late May.

“Some species of trees spread root systems underground that interconnect the individual trunks and weave the individual trees into a more stable whole that can’t so easily be blown down in the wind,” wrote Rebecca Solnit in her essay A Short History of Silence. “Stories and conversations are like those roots.”

The nighttime calls were my root system that leant a beautiful intimacy to already existing friendships. Everyone who signed up already knew me fairly well. The combo of my present situation, plus the tenderness with which everyone tried to tiptoe around it, assured that the calls were truly wonderful.

I wanted to direct the conversation away from my explaining how I was doing. I wasn’t doing very well, and to repeat that night after night didn’t seem like an effective way to sleep better. So I decided to ask everyone two questions:

- When life takes something or someone important from you or delivers a big blow, how do you find hope and joy again?

- Does spirituality affect your ability to be resilient in life? (By this I meant lower-case “s” spirituality, general connectedness to all things / something greater, not necessarily Spirituality in a religious sense. For many who were religious, it was one and the same.)

The questions led to some beautiful discourse, a deep dive into wonder and the human experience. People felt comfortable sharing their own grief and losses, as well as how they picked themselves up again.

I listened, I shared, and I felt connected to the world in a way that I missed.

I slept well almost every night.

finding joy after catastrophe CDD20 via Pixabay

***

The day before my 40th birthday, someone asked me how old I felt internally. I laughed, saying that we all felt younger than we were. But she meant an actual number. The question stemmed from an exchange she had with her friends, since none of them felt their age.

Does anyone feel their actual age, over the age of 30? I suppose I assumed we generally did not, that we were all milling around in various states of cognitive dissonance, waiting for a certainty that would never arrive.

I thought about it and calculated that my internal compass stopped at 28. That was the answer I gave last Wednesday, and it still fits after exploring the edges of the statement ever since. It was at 28 that I planned in earnest to leave my law job and start traveling. I didn’t plan to keep traveling. My one year sabbatical was supposed to morph into real life once more, and into a law job potentially in the public sector instead of a private firm.

But as the story goes, not so much with the return to the law.

Frankly, up until that point, I did things a bit backward. I started law school just after my 19th birthday, I billed 90 weeks at a fast-paced firm, then moved to a slightly smaller one to work in advertising law. While I did play mini-putt in the hallway with paralegals while waiting for my proxy statements to turn, the level of billable hours certainly wasn’t what my most of my friends in their early twenties were doing. And as anyone in the billable business knows, the astronomical hours billed in my first year of lawyering meant far more actual hours in the office all told.

From the judicious billing in 6-minute units, I took a sabbatical to turn to what I loved most in the world: learning as much as possible every day. That my thirst to absorb (and eat!) turned into a business was extraordinary. That it sustained my travels financially and led me to develop a community of travellers and readers who supported my work was… well, very delightful. Very humbling. How did these smart, capable people become interested in my site? Reader meetups were a wondrous marvel. I didn’t know how they got there. I just felt grateful.

Long-term Legal Nomads fans know that I never quit my job as a lawyer because I burned out. I quit because I wanted to see the world, and let those memories inform my next steps as an attorney. That I had the privilege to do so was never lost on me. Taken together, that privilege plus my profound awe that I mistakenly stumbled into a passion that became a career, meant that most of my days took little for granted.

And then this leak happened.

When I look back, I feel a loss of innocence. How could I have known to also be grateful for the ability to tie my own shoes? To walk down the street without fear of someone bumping into me and reversing my fragile healing?

I wrote about being in pain since I got dengue fever, and along the edges of that pain I found a deeper appreciation for my work and my life. At the time, it felt that my world was narrowing beyond recognition for each. It took adjustment to recalibrate to gratitude.

With the perspective I have now, those years feel ethereal and free. That journey toward grace, and my earlier reacquaintance with food when I learned I was a celiac, both feel expansive in retrospect.

On turning 40 | The future has an ancient heart CDD20 via Pixabay

***

One of my favourite short quotes is by Italian writer Carlo Levi, who noted that “the future has an ancient heart.” In a 2011 column on The Rumpus, Cheryl Strayed shared it and added that the quote beautifully summarizes her belief that who we become is born of who we most primitively are. Strayed’s reply was to a request for a graduation speech for writers, many of whom dreaded entering the real world.

I think it’s a useful sentiment for you to reflect upon now, sweet peas, at this moment when the future likely feels the opposite of ancient, when instead it feels like a Lamborghini that’s pulled up to the curb while every voice around demands you get in and drive.

I remembered this column when I began to write this post. Those times where the future felt roaring and new are curiously hard to grasp. With the weight of tragedy, I’m not alone in struggling to reconcile who I was with how my heart and soul has evolved.

The future may have an ancient heart, but my present does too.

In the two years since this spinal leak began, my inbox overflowed regularly with the rattled confusion that accompanies deep misfortune. And I write those people back using my thumbs and I say, “Yes – what we actually know in our hearts feels murky in the midst of unfathomable disorientation. Yes. I hear you. I’m sorry. I’m listening.”

How do you trust your heart when you can’t put on your own socks? How do you close your eyes and be you when “you” no longer exists in some fundamental way? The catastrophe led each of us to this mysterious place where nothing makes any sense always fails to provide the way out.

The cold truth is that life just isn’t fair. Depending on our childhoods, we learn that lesson early. Or, we learn it later. Eventually, we figure it out. How we deal with the stoic certainty of that unfairness as it churns through us dictates how well we survive.

In those two years, I’ve come to believe what many before me have said. That way out is through. The way out is remembering what we are outside the bounds of our wounds. In a society obsessed with doing, identity often ties to your accomplishments, not who you are. Fighting through all that “doing” to get to the “being” sometimes feels like a salmon trying to swim upstream.

My life today life is life itty bitty teeny tiny through no fault of my own. Many weeks I cannot go outside. I am not alone in this place; I have found others with similar, persistent CSF leaks and similar complications following treatment. Together we hold ourselves aloft in the ether.

As I’ve written before, getting through this is not about thinking positive for me. It’s about choosing what serves this journey best. Anger corrodes, and the last thing I need is more of that. It has taken a conscious shift to force myself past the borders of reasonable reaction, and into something open-hearted. To accept this twisted lot I’ve received, and then transform those fiery feelings into something lighter and more empowering.

A wisp of life is what I have, sure. But my work each day is to find joy in that wisp. Or put another way: I can’t change what happened now, but I can change the way I wake up each day. Moment to moment, I have had to pull out my most powerful emotion-microscope to find ways to feel gratitude despite how much I grieve.

I have many tools that have helped me calibrate that microscope, and I absolutely could not have done it alone. I also could not have dedicated so much brainpower and time to overcoming the mental aspect of this big life change without my family holding the weight of my physical care.

The “how to stay sane within tragedy” is a question I receive each day from readers. I hope to write about it when my health allows. It’s one of the most important questions we can ask, even in the absence of calamity.

Every day, the choice looms: do we dust ourselves off and try to find joy, or do we wallow in suffering? It’s a decision we all have to make. I used to think that optimizing for joy alone meant that we were neglecting the reasons for suffering. I equated the shift in thinking to burying my head in the sand. Through this experience, I see that even when we have good reason to wallow, it doesn’t help us endure or overcome.

My stakes feel particularly acute, since most of my days are spent to myself. I first had to accept the intrinsic unfairness. Slowly now, I can untangle the knots of my frustration and despair, and flatten out the thread until it looks sleek. Neat and tidy.

And then the next day, I start all over again.

***

Jodi Ettenberg (c) Marie Christine Genero, 2019

This picture was a generous gift from my friend Marie-Christine. A wedding photographer, she came over to shoot photos and make me feel glamorous for my 40th. I put on makeup for the first time in almost a year, went on the balcony, and MC did her thing.

A wise person once told me decades ago that it was smart never to compare my insides to someone else’s outsides. Few people wear their struggles on their sleeve or their face. We never know someone’s story, we can’t say what is weighing them down or lifting them up. We use our own beliefs, honed with however many years of bias, to make a judgement call about a stranger.

It doesn’t look like I spent 10 months in bed or that my brain is sinking into my spine, does it? There’s a reason they call it “invisible illness”. It’s one of 30 photos I’m set to receive, all taken last week. My smile and laughter are real. I had an excellent afternoon with a dear friend, even though I paid for being upright with some extra pain.

The afternoon was a reminder of what I’ve tried to remember as I pass through this extraordinary time. That each moment we get with someone we love, each second that we can find goodness and joy — that’s one moment we aren’t giving into what exists and can dredge us down.

***

“As my face changes, I will lose myself,” writes Chelsea G. Summers in a piece about the skincare industry. “The skin-deep existential crisis is this: Who am I when I don’t recognize myself in my own skin?”

As a woman, aging unfurls all sorts of whispered consequences. Peeking grey hair and wrinkles and yes, changing skin. These days, aging is somewhere in a storage space at the back of my mind. At forefront is instead the dearth of basics that I never thought I’d lack. Walking. Being able to tie my own shoes or cut my own toenails. Opening a heavy drawer. Cooking my own food. Laughing hard or coughing or sneezing without worrying about opening up a bigger leak in my spine.

It’s not been an easy few years. It’s been the hardest few years, harder than I ever thought I could sustain. I haven’t given up, and have surprised myself with the resilience I needed to power through. “I couldn’t do what you’re doing,” people tell me. Of course they could. We never know the depths of our own adaptability and strength until it’s deeply called into question.

My story is no exception, it’s just a story of extremes. Freedom to not-freedom, with the love of the world in between.

Learning as much as I could powered my life as a traveler, and it’s powering my life now. I’ve spent two years reading everything I could about neuroplasticity, immunology, and epigenetics. I’ve meditated more than is reasonable. Through force of imagination and curiosity, and with the help of many remarkable people, I’m no longer in the pit. Even though I don’t know when I’ll walk again without brain sag.

There are thousands and thousands of people who have shown me they care during this absurd time. I try to show up for other leakers in the same way, or for readers who are scared about their pain.

I dreaded my 40th for the last while because my plan was for years to summit a big mountain with my friends. But as the day approached, I made more peace with where I am. Is it where I wanted to be? Absolutely not. But the same lust for life that fuelled my too-young-to-be-lawyering years and my eating-all-of-the-soup years sustains me now.

Life changes in an instant, and I feel proud that I packed in more in my 40 years than many people get in a lifetime. For the last two years, I’ve had to live life from the inside-out, searching for answers that don’t exist. Trying to keep my brain afloat both literally and figuratively.

***

My actual birthday was as good as it could be given the circumstances. I woke up to a burst of love from around the globe from my family, community, and friends. Friends and my mum stopped in all day long in waves, to give me gentle hugs. My Montreal bestie, who you may remember from my post about how I officiated her wedding in Costa Rica, came over for sushi dinner and a beautiful cake.

The cake was specially by Kleine Shoppe. The owner, Katie, patiently took my short list of “ingredients that don’t cause a Jodi to go into anaphylaxis” and turned out one of the most beautiful cakes I’ve ever had the pleasure of eating.

To be clear, she chose the message not me. But it was both hilarious and delicious, and I saved some of it for future consumption.

I went to bed content on my 40th. Even without the foods I used to obsess over, I felt sated. And most of all, I felt deeply cared for.

Many of us have a hard time receiving love, and that’s been a lesson for me in the past two years. It’s hard not to feel unworthy – not of love generally, but the fierceness and care of so many who want to see me well. The natural awkwardness of that feeling is far eclipsed by the strength it gives me, and the humbling effect the support has.

I’ve always looked young, something that was a liability as a lawyer and a source of mirth as a traveler. But now, it feels particularly off-key. When I first arrived in New York as a summer associate I was 20. Amazed I was there at all, I would scrutinize people’s faces as they passed by. Who would I look like? Where would my life lead me in 20 years time? It’s always fascinating to remember the shape of those predictions in retrospect.

I look at my face and my face doesn’t look forty.

I look at my face and think, who cares how old my face looks?

In that 2011 Rumpus column, Strayed writes about the interstitial years between knowing your heart’s path and making it there, eventually.

The most terrible and beautiful and interesting things happen in a life. For some of you, those things have already happened. Whatever happens to you belongs to you. Make it yours. Feed it to yourself even if it feels impossible to swallow. Let it nurture you, because it will.

When I stare in the mirror, I see a weary but strong version of me that doesn’t jive with who I was, but is exactly who I am. Surprised and knowing all at once.

And in those quiet exhalations when the pain lessens for a blessed moment, I feel overwhelmed with pure love.

My soul in bloom and my ancient heart and my youthful face, all of it, braided together to help me feel whole.

-Jodi

How You Can Help

A lot of incredibly generous people have written to ask how to help during this time. I am not starting a Go Fund Me again, and unless things change I do not plan to.

However there are three easy ways to help.

1. Help by Donating to the CSF Leak Foundation

Help by making a donation to the CSF Spinal Leak foundation, a 501(c)(3) charitable organization that has advocated tremendously for the condition I’m currently working to overcome. They are a lean organization, with those involved also dealing with spinal leaks – so every dollar counts. I’ve started a fundraiser for 1 week, via the Legal Nomads page. If you’re on Facebook, you can make a donation here until the fundraiser ends on August 22nd.

2. Helping me personally (which many of you have asked for specifically!)

I’ve told friends and extended family that the best way to help me is an Amazon gift card. This allows me purchase ingredients for foods I can eat, like teff and tiger nut flour, without my parents having to go hunt for them. I also use Amazon for the items that help with the disabilities I face – grabber devices, coccyx pillows, and my fave! Lying down glasses. You can send a gift card to legalnomads-at-gmail.com if you’d like to contribute to me personally.

3. Help spread the word and raise awareness about CSF leaks

CSF Leaks are an under-diagnosed condition than can arise from a spinal tap, epidural, spinal surgery, epidural steroid injection, and even spontaneously.

If you’re in the USA, please see the CSF Spinal Leak foundation‘s page, including the research studies they have previously funded.

If you’re in Canada, there’s a new Canadian foundation that was started by leakers this year. Awareness of leaks is specially low in Canada, and doctors here told me that I was just “having migraines” – even though they went away when I laid down. The leak experts are predominantly in the USA, so hopefully with more awareness and doctor education this changes.

***

PS. It seems my internal age broadcasts externally just fine, because several people joked that I looked 28 before I published this post. Here are a few of the responses from my birthday pics on FB and Instagram:

PPS. I had to end with a llama

jodi ettenberg 2019

THE LUMBAR PUNCTURE THAT CHANGED MY LIFE

HEALTH ISSUES, TRAVEL NARRATIVE, WELLNESS

This post was published on April 10, 2018, with newer updates and additional resources at the bottom of the post.

On April 1st, I went for a short walk to watch some Florida marsh hens rustle through the reeds and cackle at the wind. The date marked one month since I started walking again. I sat there, awkward and sore on a tiny bench facing the water, fighting back tears. Despite a newfound excitement about local wildlife, and my gratitude to be to be walking again, this was not where I planned to be.

April 1st also marked the 10-year anniversary of leaving my career as a lawyer in New York. On that date, I set off for Chile, leaving behind a comfy job and half a decade in a city I called home. In the years since, I planned to commemorate my 10-year travel anniversary with a giant party in a city I loved.

Once I moved to Oaxaca, I found it to be the perfect spot. The occasional idea would pop into my head during my long wanders around town. I’d plan for my favourite stalls to participate, giving hungry visitors a taste of Oaxaca’s rich culinary curiosities. Israel’s head tacos, Mateo and Sarai’s grasshopper pizza, mole, tamales, chilaquiles, pozole, and so much more.  Anyone who wanted to come could, and I’d put together an itinerary for the week where they could enjoy the city, stuff their faces, and revel in the joy of learning about Zapotec and other cultures through food. We’d have a mezcal-soaked multi-day educational extravaganza, with bumpy collectivo rides into the valley and plenty of smiles.

my experience with a lumbar puncture leak and what blood patching

As I’ve said in prior posts, I did not start Legal Nomads with a goal of becoming a full-time travel/food writer or public speaker. I did not leave the law with even an inkling of a new career. I left for a one-year sabbatical, hoping to return to the law with some adventures and new experiences to call my own.

I don’t think I was particularly good at traveling. I got sick a lot. I hated packing, always and forever. And I didn’t even care how many countries I visited or sights I saw. I just wanted to keep learning, and eating, and exploring.

However, in the course of soaking up everything I could, I found that travel and food were the perfect foils for my enduring need to write. I always wrote, even if no one was reading. In notebooks, on scraps of paper, on my laptop. It was catharsis and processing, rolled into one.

In Mari Andrew’s wonderful, whimsical book Am I There Yet, she shares the story of how a shopkeeper in Berlin changed her perception of art-as-craft. “She spoke about art as though she were talking about her best friend or a bubble bath,” Mari writes. “She wasn’t creating for accolades, but for the satisfaction of a new paintbrush dipped in fuchsia.”

That satisfaction, of stringing words together in new ways, of sharing a perspective that hopefully affected some change, was all I needed to feel creative. Writing was a tool that connected me to the world in ways I never contemplated. Through travel and photography, and the organic journey of my unexpected career shift into food and travel writing, I was able to build a life that taught me new lessons that I could share every day.

Now, in this seemingly endless stretch of shocking changes, writing has been physically difficult at a time I needed it most. For many months, I have been in tremendous amounts of pain, unable to sit or walk or stand. I truly felt like everything I worked hard to build was gone.

It All Began With a Lumbar Puncture…

For those of you just tuning in: sudden and very scary symptoms led me to the ER in Brooklyn, where they performed a lumbar puncture to rule out certain conditions. Truthfully, it was one of the most painful experiences of my life. It’s not supposed to be a painful procedure, but for me it was because the local anesthetic did not work.

I was told one of the rarer risks of the procedure was “a headache” that would go away after a few days. What I didn’t know at the time, and wish that I did, was that lumbar punctures are the most common iatrogenic cause of spinal CSF leaks—and that the risk of a leak is not as rare as believed, especially for petite women like me.

After my painful ER visit, I returned to the apartment I was cat-sitting at after midnight, only to find it burgled in my absence. Upon my sharing this detail with readers after the shock wore off, one thoughtlessly commented that I must have “angered the karma gods.” Actually, it may be quite the opposite. We have a screenshot of the person as he came in through the window, thanks to my friends’ nanny cam in their child’s room, the room climbed the fire escape to enter. His head is fully covered in a patterned ski mask, he is wearing gloves, and he is carrying a white cloth in his hand. His description matched home invasion rapes in that borough, the white cloth in those cases soaked in chloroform.

Do we know what he planned that evening? No. Upon seeing the screenshot, friends agreed with my vile theory that burglary may actually have been the consolation prize. The whole thing made me sick to my stomach to think about.

Already in so much pain following the spinal tap, I couldn’t be alone in the apartment, even during the day, since I was confined to bed. Friends stepped up and rotated day and night until my mum and stepdad could arrive from Montreal to take me back to Canada. Some brought food, others brought hugs. Most simply sat with me, soaking in the insanity of what I referred to as my “black swan night.”

I didn’t mention this part of the story in my earlier, because at that point my brain was a frozen video, buffering nonstop. But it is important now because many of you have asked why I am not more angry, which is a valid question. I don’t think anger serves me here, and it certainly won’t help my healing. But also, there is a clear line in the sand from that very traumatic night.

The divergence of fates: the Jodi that stayed home, versus the one that went to the ER.

A Winter of Extremes: Post Puncture Dural Headache to Spinal CSF Leak, and Everything in Between

The lumbar puncture (or spinal tap, since many people use that term instead) led to a debilitating condition called a cerebrospinal fluid leak, a spinal CSF leak.

Cerebrospinal fluid is the fluid that surrounds the brain and spinal cord, contained by a connective tissue sheath called the dura mater. Latin for “tough mother,” the dura mater has a critical job: it keeps the CSF within its borders to cushion and protect the brain and spine.

A hole or tear in the dura results in a loss of CSF volume, meaning that the natural waterbed shielding the spine and brain is reduced, and the brain sinks inside the head. When a person is upright, this sinking affects the body in a myriad of torturous ways, including “brain sag,” a telltale sensation of pressure and intense pain at the back of the head.

Other symptoms can include dizziness, nausea, pain between the shoulder blades, bladder dysfunction, low lying cerebellar tonsils, nerve pain, and in rarer cases subdural hematomas, Parkinson’s-like tremors, unsteady gait, seizures, and more.

The positional symptoms are an important diagnostic clue. When lying flat, CSF pressure in the head and spine are equal. When upright, the pressure in the head is much lower than in the bottom of the spine. For those suffering from a CSF leak, the additional loss of CSF volume from the leak causes an even larger drop in pressure when standing.

When I laid flat, the “brain sag” dissipated, as did most of my other symptoms.

I mention these details because few medical providers are specifically taught to recognize and diagnose spinal CSF leaks. Given the lack of training, myths persist that lead patients to be misdiagnosed or deprived of treatment after a post-puncture leak.

Like me.

Initially, my symptoms were classified as a post-dural puncture headache (PDPH). Truthfully, calling it a “headache” significantly undershoots the systemic pain that I described in the symptoms above.

That “headache” often resolves with conservative management: lying flat, caffeine, lots of hydration. But for many patients it does not and an epidural blood patch is needed. This is a procedure where the doctors inject your own blood into the epidural space, to create a clot that allows your body to heal the area of the leak. The patch is not the lasting “seal” itself; the mechanism of action encourages your body to knit tissue back together at the leak site while temporarily stopping CSF outflow.

I did return to the hospital in New York to try and get one, but was told that it had its own risks and that I ought to heal fine on my own. I specifically asked whether or not it was possible that I didn’t heal, and that not getting a patch would be a problem for healing.

“I’ve never heard of that happening”, said the doctor.

I wish he was right.

Several weeks later, at that point in Montreal, it was clear that I wasn’t healing.

Terrified, and bleakly looking at the calendar toward my supposed departure for Oaxaca in October, I spent my hours in a state of half-shock, half-Nancy Drew. I read studies, forum posts, panicked write-ups and more from around the web for any help I could find.

In retrospect, I realized that many of the aspects of the puncture—the position (curled over the side of the bed), the needles (18g, very large), the type (cutting needles), and that it wasn’t done under guidance—all contributed to my leak being complex but to the fact that I obtained a spinal leak from the procedure.

The hospital’s advice to lay down that evening and then just carry on as normal also prevented self-healing after a procedure with all of those risk factors. I did not know that many of the things I did—like shaving my legs in the shower, bending in certain ways, lifting a jug of milk, etc. were all things that likely impeded my healing at a critical time.

Unsurprisingly, the biggest help for my next steps came from my own community.

A few months prior to the spinal CSF leak, I made a point of visiting a mini cow named Moochi, who I found on Instagram. I may or may not have attended a conference in Los Angeles in part to facilitate this bovine meeting. At the time, he was co-owned by a guy named Tim.

It turns out that Tim was dating a woman who previously had a CSF leak—except she had hers for years prior to diagnosis. Her leak was spontaneous, making it much harder to locate, and she ended up needing surgery to fix it. She had a connective tissue disorder, common for those with spontaneous CSF leaks (both spinal and cranial) and was a beacon of sanity during these early months.

She added me to a private CSF leak group on Facebook with several thousand leak patients from around the world.

serendipitous meetings led me to seek treatment at duke for a csf leak

In that Facebook group, I learned about people’s tips and tricks for trying to “self-heal” so I could maximize my own body’s ability to seal up the holes from the lumbar puncture. My days involved lots of rest, supplements, and limited movement.

Unfortunately, sealing up without help proved to be fruitless. Confined to bed, I spent hours reading, and feeling less hopeful by the day.

In addition to the “brain sag” I experienced the moment I was upright, I also suffered a new slew of symptoms that I never had before. Nerve pain in my tailbone and sacrum, burning pain up and down my spine, a new, sudden reactivity to foods I had no issues eating before, muscle twitching, insomnia, and a whole host of unpleasant other things that I won’t bore you with right now.

Suffice it to say that CSF outside the dura mater, the membrane that protects the brain and spinal cord and keeps the CSF from coursing around willy-nilly, does not feel good for the rest of the body. My nervous system was deeply affected, and my body barely felt like my own.

Concurrently, there was a lot of shock and grief.

I was supposed to be hosting readers on food walks in Oaxaca, but instead I was in a lot of pain, more and more deconditioned by the day. From people I spoke with and case studies I read, several months of leaking meant sealing the hole(s) could be more complicated than a simple blood patch.

Spinal CSF leak patients in Canada urged me to head to a specialty centre instead of attempting to pursue treatment domestically.

American patients even said they wished they had gone straight to one of the specialty centres instead of their local hospitals. And given that Canadian doctors had already claimed I had a migraine instead of a spinal CSF leak, I didn’t need much convincing.

The problem was, with ten years of nomadism, I had no residency or main doctor to refer me.

I had to find the strength to get creative and find a way for the centre to take me on, which felt impossible in my current state. But, I slogged through and arranged to get the MRIs needed for my submission to Duke, wrote a cover letter that my friends proofed for me, and sent it off. Lying down for 23 hours out of 24 in a day, I was simply in purgatory, hoping that Duke would agree to see me.

I thought about how to share the sheer futility of what waking up felt like without sounding dramatic, but there truly is no way. Those beginning few months sapped any joy for life that I had out of me, and I would open my eyes in the morning wondering what the point of fighting was. The pain was excruciating moment to moment. I really felt waterlogged with sorrow.

I couldn’t put on my socks for months, or bend, or twist, and my next steps were a swirling limbo of administrative papers and MRIs. I saw life through a prism that only showed me extremes.

after the spinal tap but before epidural blood patching

During those months, what kept me afloat was friends and family, and support from my community. My close friends were a bridge to a state of sanity that felt far out of reach. They reminded me daily of all the (occasionally crazy) things I did fight for in my life. When I simply replied that I couldn’t formulate words anymore, they’d always hold space for my sadness.

North Carolina for the First Time: Blood Patching at Duke

We all knew was that Duke seemed to be the best in the business for patching spinal leaks. So I tried to put what little energy I had toward fighting for the MRIs I needed from the Canadian side in order to be considered for treatment.

Thankfully my stubbornness paid off, and they agreed to take me on in early December. My mum and stepdad, who had already fetched me in New York and then fed me and changed my socks for months, volunteered to drive me down to North Carolina. Laying in the back seat and staring out the sunroof during several painful days gave me plenty of “what ifs” to think about.

By the time I got to Duke, I was shaking with exhaustion.

I hope to write more about the patching process, as well as things I wished I knew ahead of time, as there are many.

The salient points are: the first and second round of patches did not work. The third did, and threw me into agonizing “rebound high pressure,” where the leak was sealed but I had excess CSF fluid since my body was so accustomed to leaking. Then, two weeks into being sealed, I fell back into a chair as I was sitting for dinner, and tore through my healing.

The rollercoaster of highs and lows from this experience was itself a foreign, polarizing spectrum of emotions. From not knowing if the patching worked, to navigating high pressure, then adjusting medication to try and stabilize pressure, followed by the crushing knowledge that I was back to leaking after I sat too heavily— it was all too much. I was so incredibly careful with every single movement I made, and a small slip was all it took to be thrown back to square one.

Blood and Glue Patching for a Spinal CSF Leak

I ended up needing four rounds of blood and glue patching at Duke.

This involved injecting the blood and glue into my epidural space, spread along twenty-two targeted patches total. The jaw-dropping part of this entire CSF leak experience is that it’s very difficult to know exactly where to inject. For iatrogenic leakers like me, who got a lumbar puncture or epidural or injection, they have a general idea. But puncture leaks show up on imaging only a small percentage of the time and thus pinpointing the exact location in the dura is very difficult.

So despite knowing the general “lumbar area”, it still took several rounds to get me sealed. The initial spinal tap was not done with fluoroscopic guidance, and there were multiple attempts. In some cases, the needles go through to the anterior side and the patient requires a 360 degree patch—something Duke pioneered, and I received.

right before blood and fibrin glue patching at duke's radiology department

The entire CSF leak team at Duke Radiology was extraordinary, and often work together for challenging cases. I tipped into that category following patching round two, and was impressed with how they each consulted each other. They were transparent about their process, and prior to each patch my doctor sat down with me to discuss his strategy for the procedure.

My doctor was compassionate and kind, and willing to answer my many questions. He checked in with me frequently by text following each patch, and called when things got worse. Given that he was the only doctor I had, I very much appreciated his care. He also gave me more faith in the medical profession after feeling so disillusioned by my treatment in New York and Montreal.

Spontaneous spinal CSF leakers like Tim’s ex-girlfriend can blow leaks in their dura simply living life. The condition is called SIH, spontaneous intracranial hypotension. These patients often have an underlying connective tissue disorder that makes their tissue less robust than normal. Because MRI and CT imaging is not yet sensitive enough to easily show smaller leaks, it remains very difficult to diagnose these patients and/or know where to patch.

The imaging to find leaks is itself invasive: looking for a leak often requires a CT-Myelogram or Digital Subtraction Myelogram, both requiring intrathecal (inside the dura) injections of contrast dye to look for the leak site. So finding the leak requires making a new hole, which itself can and has made new leaks.

It often takes them years and years of misdiagnoses before SIH patients are able to get treatment for a CSF leak.

In my case, my narrative was clear: I had a lumbar puncture, and was incapacitated right after it. Despite those facts, and that I did not have neurological issues or headaches prior to the lumbar puncture, the doctors I saw rejected me for a blood patch until I got to Duke. It’s even more difficult to get care for spontaneous spinal CSF leak patients.

These spontaneous spinal CSF patients are a big percentage of Duke’s CSF practice.

For a 2021 update that connects the dots to why my lumbar puncture led to a chronic spinal CSF leak, please see My Chronic Pain Explained. It turns out that I have both a connective tissue disorder, and a mast cell disorder, both of which make my situation more complicated.

Slow and Steady Wins the Race: Recovering from my CSF Leak

After the fourth round of patching, it wasn’t clear whether I was sealed. I was in a cycle of having leak symptoms and laying flat, then propped up with higher pressure symptoms, feeling like my head was going to pop off my neck. Rising above the snarled periphery of very difficult facts proved to be a challenge.

It wasn’t until early March 2018 that my symptoms evened out. I decided that I would start walking on March 1 regardless of how I felt, but in late February I still wasn’t sure what was going on. After patching, I spent most of my days meditating, visualizing my body’s healing, and reading. Vipassana meditation proved very valuable, as did other meditations I’ve tried over the years.

Throughout, the focus is on a ‘moment to moment’ scale. When all of your moments are strung together with a tightrope of pain, however, seconds feel like hours. It took constant vigilance to tirelessly reroute my thoughts and stay in a place of possibility. I fought myself on the facts that augured failure, and the hum of dread that sucked me back into a spiral of ‘what ifs’.

By early March, my dad and stepmum were taking care of me in Florida. On March 1, I walked from their house to the end of their street, a few houses away. I came back exhausted. Every day, I forced myself a house further. By the end of the week, I made it to the stop sign. And by mid-March, in what felt like a miracle, I was walking an hour a day.

The walks came with a lot of back pain and brain fog, but without the “brain sag” feeling that I felt for five months when leaking.

In my determination to quiet my mind, I’ve been able to listen to my body. In the past, I’ve pushed my body past exhaustion. Now, when it says to stop, I stop. There is a difference between adding an extra house on my walk and tipping into a deep weariness.

I struggled to differentiate between the two over the years, but the high stakes during this journey have proven an excellent motivator to get better at listening. This means taking things very slowly, much more slowly than a Jodi would have done during the magnetic, vivid intensity of these last ten years.

recovery post blood patching

The Gift of Surrender

When I checked into Duke for that last round of patching, I was no longer nervous for the procedures. I thought I knew exactly what to expect. The blood patches were painful but straightforward. I even knew the nurses by name! But round four veered far off-script when I had an allergic reaction to the fibrin glue and went into anaphylaxis. Fuchsia from head to toe, my heart racing, eyes swollen shut and throat beginning to constrict, I received IV steroids and then an epinephrine jab in the leg.

I’ve never needed to carry an EpiPen or had allergies before. The experience of anaphylaxis was both surreal and scary, but I am sharing for one main reason: in the midst of all the commotion, I felt complete calm. Though my body was shaking wildly from the epinephrine, my mind was steady.

Later that day, my doctor asked me if I was calm due to shock. But it wasn’t that at all. I felt deeply at peace with the prospect of dying. I felt no big regrets, only the small nagging ache of specific time wasted that I wished I could undo. I pursued a life that excited me, and I built a business I loved. I stuck to my standards and wrote pieces I was proud of. Somehow, these things brought in an incredible community of readers who supported my work and found value in it. Of course I preferred to live, but if this was the end, I was ok with that.

At the end of last year’s post, I wrote that the lesson for that year was one of acceptance. After almost a decade of being a digital nomad, I settled down in Oaxaca and put down some roots in a delicious city I loved.

As with almost everything else in this tale of unwitting transformation, acceptance teed me up for this year’s fundamental message: surrender. When everything that makes sense distorts into a haze of senseless confusion, all you can do is let go.

It took many months for me to get here.

First, the disbelief. Then, as I understood more of what had happened to my body and the limitations many have, even when healed from a CSF leak, more grief. “Ultimately there’s no escape from living with uncertainty, for anyone,” says The Atlantic. There’s no rocket science there. But what happens when the not-knowing involves every aspect of your movement and life?

Many of the spinal CSF leak patients who had a hard time getting sealed, or re-leaked months or years later doing something seemingly innocuous. They blew a leak in their dura doing downward-facing dog during yoga, or when the plane re-pressurized upon landing. Or leaning down to pick up some laundry. Some never get sealed at all.

For now, there is no bending, lifting, or twisting. “Maybe forever!” jokes a fellow patient, and as with any morbid humour, there is some truth.

Who knows. None of us knows much. After all, life is essentially chaos and our personalities dictate where on the “exhilarated to terrifying” line we fall to handle the disarray.

My current not-knowing is so disproportionate, so definitive. Regardless of what happens, I will never be able to move without consciously thinking of potential damage. I can’t risk it. And I will never be able to live the life I led before. That’s not to say I can’t build a different, good, life with what I have now. I’m working toward building a different version that can bring me joy in new ways.

But there remains a great deal to process and grieve within the very eventful last seven months, as things have irrevocably changed.

***

I reread Viktor Frankl’s book Man’s Search For Meaning during these difficult months. Frankl’s time in Auschwitz led to his development of logotherapy in his psychiatry practice, but the book delves into his theories of why certain people managed to survive the Nazi camps.

Frankl saw life as a quest for meaning, found in work, in love, and in courage during difficult times. Among his beliefs was that suffering itself is meaningless, but we give suffering meaning by the way we respond to it. Or, as Harold S. Kushner writes in the introduction to the latest version, that “forces beyond your control can take away everything you possess except one thing, your freedom to choose how you respond to the situation.”

Instead of thrashing around in grief, I’ve chosen to focus on the gifts that have come out of this very complicated year. With these facts, things could have been a lot worse. Instead of being confined to isolation, I have you to walk this path with me. My community around the world raised their voices and opened their pocketbooks to keep me afloat when I couldn’t manage it. You respond to my progress walks on Instagram, you cheerlead every update, and your birding skills helped me identify the beloved marsh hens that I fell for during this recovery.

Several of you have said you will be pursuing a diagnosis for CSF leaks based on the symptoms I shared. Others wrote to say you were doctors or anesthesiologists, and while you were trained to know CSF leaks, my story helped remind you of the risks. When I say community, I mean everyone. Family. Friends. Readers. Travel bloggers. Parents of travel bloggers (the amount of notes from parents of travel bloggers has been astounding and beautiful.) Strangers.

I’m lucky because you’ve helped me feel like my work matters. You’ve helped me remember why my life had meaning. And even if I can’t go back and do everything I used to do, I still have my words.

Getting to surrender wouldn’t have been possible without my close friends. There are several who stepped up, but I wouldn’t be here without my sister-from-another-mister Shannon. You may know her from my 2011 winter in Chiang Mai and many subsequent misadventures. She happened to be in Virginia when I got to Duke, a mere four hours drive away. Thanks to her flexible schedule and ability to work anywhere, I was able to stay near Duke and get the treatment I needed over the course of many weeks. She not only drove me down from North Carolina to Florida, but stayed with me for over two and a half months, and shouldered the exhausting task of taking care of me while managing the many, many nights of tears.

shannon a little adrift

I did spend time mired in the unfairness of the situation, and scared of what could go wrong next. Despite the stats that say many people leak and re-leak again when their first leaks are difficult to fix, I decided to choose possibility. Despite the moment to moment pain that is my present. It doesn’t matter, because truly we just don’t know what’s possible.

There was a quiet, twisted grace in that surrender to possibility, a gift I never expected.

What’s Next for Legal Nomads?

My friends, I do not know.

I still want to write, and I’m grateful that I have Legal Nomads, where I can do so. I still have many celiac guides to put up. I have a course about storytelling I was planning to launch. And so many stories about Oaxaca and Day of the Dead, about the history of different foods, and photos from around the world.

The beauty of a location independent business is that it exists wherever there is wifi. Whether or not I will be able to travel, however, is very much up in the air. This will be something I take one day at a time, just like my healing.

It is this business that gave me a full shot at healing. The ability to stay near Duke as needed. The friends who also led flexible lives and could come to help out. The celiac cards and maps of food that sell even though I’m not online. The fact that I don’t need to file for disability or worry about losing my job. I have plenty to worry about in terms of stability and ability to work, but it’s a lot less stressful than had I still been a lawyer.

There is plenty of talk about digital nomads, and more and more mainstream news pieces covering the movement. Most interviews point out how freeing it is to move at will, and for me doing so while forging great, lasting friendships has made the last ten years an incredible ride. But the flipside is the flexibility when life goes awry, something I thought of but never had to exercise with such impunity.

One Day We Will Have a Party Together

The flowers in this post’s header photo are cockscomb celosia, my favourite flower in the world. I discovered them years ago, and loved that they looked like tiny brains. To me, they symbolized resilience and wonder, and I often bought them in New York during my lawyering days. I fell for Saigon in a heartbeat, and clapped my hands with absolute glee when I found out that my beloved flowers were a mainstay of the lunar new year, Tet. In Oaxaca, the third city I fell for, I learned that they were an important component to Day of the Dead.

(If you’re wondering, the second city I fell for was Lisbon, and though I planned to move there Oaxaca stole my heart in the interim.)

People tell me that these flowers symbolize courage and boldness. I was drawn to them for their quirky shape, but after the last seven months I feel courageous, too.

After traveling to places during military coups, getting sick along the way as travellers do, getting into accidents, and so much more, it was a simple medical procedure in New York that brought me down.

The stubbornness that kept me going during the shadow days of long term travel helped keep me afloat here. And the community I built along the way took over when I just didn’t have the energy.

jodi ettenberg

I still plan to have that party one day. It doesn’t matter how long it takes, or where it ends up being held. All of you who want to attend and celebrate with me, should. A commemoration of what others may see as unconventional, but now also a nod to resilience. To the support we can afford each other when shit gets real. To remembering that while we sometimes seem very different from one another, deep down we all share so much.

It feels surreal that this all happened during the past seven months. Life can change with one small misstep, or a series of big ones. I couldn’t have written this movie-like script if I tried, in my most creative flow state. It’s just so crazy, and even with this extensive post, I haven’t shared the full extent of what has gone wrong.

It’s been one deeply tangled web of a year, all sharp angles and fear. Even the small events seem almost excessive in their depth and effect.

But I’m still here.

That alone is celebration enough for me.

-Jodi

UPDATE October 2018: my spinal CSF leak reopened

My healing continued on a steady course, despite some setbacks, and in August 2018 I was able to climb Mount Royal in Montreal with my mum – a huge feat after everything you read in this post. I was clocking in 4-5km a day of walking comfortably, and looking to finally get back to work.

Unfortunately, late September 2018 I sat on the floor and stretched the wrong way. I felt a bit of a “pop,” and then all of the symptoms of leaking returned over the next few weeks: the brain sag, the neuro symptoms (muscle twitching), circulation issues, light sensitivity, neck pain, tailbone burning and pain, and much more.

I knew I could not do fibrin patching again, given the anaphylaxis I wrote about above. Blood patching alone, the doctors said, often took multiple attempts for complex cases, and I had already tried four patching rounds with fibrin.

People have asked about surgery, but I do not have an exact leak location, since my precise area of the leak did not show up on imaging. There is the option of exploratory surgery with one doctor, but they suggested exhausting less invasive options first, like another round of patching.

I hope to return to Duke for blood-only patching when I can.

UPDATE: 2023, still leaking

It turned out that there were other complications that got in the way of going back to Duke. I have not been in touch with them for some time while I figure these complications out with the help of specialists. Among them is significant mast cell dysfunction, which led me to write a resources page about mast cell activation disorder (12,000 words and counting!). I update that guide when new studies come out. Trying to get on top of that condition is a big challenge.

In addition, I have some nerve damage and adhesions in my spine that showed up on a recent MRI, which add additional risks to patching. I hope to get my body strong enough to get patched in the future.

It has been a heartbreaking development after slowly building up strength during those months of being sealed and on my way to healed. The hardest part of being back here is knowing how hard it was to seal up last time, and the fragility of that seal even months later.

Since 2018, I spent a long time in bed and slowly gained more mobility over time. For most of 2021-2022, I was “functionally leaking”—or semi-functionally at least. Since 2021, I live independently. My brother and his partner come over once a week to help with groceries, laundry, and batch cooking when needed.

I have set up the apartment I’m in with accessible options to help me day-to-day. I walk 3km a few times a week when weather allows. I stand up to type and write when I can, trying to make the most of my few “up” hours a day. Some of that time goes to the basics of living alone, like cooking or doing dishes or the like. Mostly, it’s a day of calculus: how much can I do before I need to lay flat again?

And it’s a day full of pain.

In the last few years, I self-experimented with regenerative medicine, supplements, and more to try and get me upright enough to function as I am. These did get me more standing time, but did not seal the leak. I anticipate needing to be patched again to try and get a seal, but the complications mentioned above factor into the decision and for now I have taken a conservative approach.

After living with family and extended family for four years, living alone has been delightfully quiet. My head is so sensitive with a spinal CSF leak that having no one talking around you makes a big difference.

But, in 2023 I reopened the leak further when sliding on the winter slush. So I’m not sure how I’ll be able to manage living alone like I used to.

These last few years, one of the hardest things has been the mental aspect of adjusting to the fact that a life I loved was taken away. Accepting this situation took a lot of work, but I more resilient for it.

I talk a bit about how I’ve done that in an October 2021 video interview with The Browser:

I highly recommend a therapist specializing in grief for anyone working through this significant of a life shift. The loss of what you knew and the acceptance of this hard place instead are both very difficult without that extra guidance