The Spinal Tap That Changed My Life

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 infatuation with the local wildlife, this was not where I planned to be.

I was grateful to be walking, but April 1st also marked my 10-year anniversary of leaving New York. It was the date I set off for Chile, leaving behind a comfy law 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, it proved 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 through food. We’d have a mezcal-soaked multi-day extravaganza, with bumpy collectivo rides into the valley and plenty of smiles.

In a field of marigolds during Day of the Dead preparations in Oaxaca de Juarez

In a field of marigolds during Day of the Dead preparations outside of Oaxaca. This picture was taken near Zaachila.

As I’ve said in prior annual reviews, I did not start this site aiming for a job as a full-time writer or public speaker. I did not leave the law with even an inkling of a new career. Plus, I wasn’t even 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. I just wanted to keep learning and learning. 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. Through writing and photography, I was able to keep my input levels high on a daily basis while arcing into a very unexpected life path.

In Mari Andrew’s wonderful, whimsical new book Am I There Yet, she writes of a shopkeeper in Berlin who changed Mari’s 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. And in the seemingly endless stretch of these past seven months, when I’ve been unable to sit or walk or write, I felt like I lost the life I worked so hard to build.

It All Began With a Spinal Tap

For those of you just tuning in: sudden and very scary symptoms led me to the ER in New York, where they were concerned I had a brain bleed. To check, they performed a very unpleasant spinal tap with needles that were large for my frame. The local anesthetic did not do its job, and truthfully it was one of the most painful experiences of my life.

The night of my ER visit, I came back to the apartment I was cat-sitting at after midnight, only to find it burgled in my painful 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’s quite the opposite. We have a screenshot of the person as he came in through the window. His head is fully covered in a 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 likely 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 and messed with my mind. Already in acute pain following the spinal tap, I couldn’t bear to be alone in the apartment, even during the day. Friends stepped up and rotated day and night until my mum and stepdad could arrive from Montreal to take me back. 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 October post 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 — is very stark.

Through all of the subsequent treatments and uncertainty and pain, my belief remains that it would have been worse had I remained in the apartment that night.

A Winter of Extremes

As you know by now, the spinal tap (or lumbar puncture, since many people use that term instead) led to a rare and debilitating condition called a cerebrospinal fluid leak (CSF leak). Initially, I only had a post-lumbar puncture headache. The headache often resolves with an epidural blood patch, where your own blood is injected into your epidural space to help your body heal the hole(s) in your dura created by the spinal tap. 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.

Several weeks later, now in Montreal, it appeared that my body wasn’t cooperating with their healing plan. 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. Unsurprisingly, the biggest step forward came from my own community.

A few months prior, I made a point of visiting a mini cow named Moochi, who I enjoyed following 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, who runs a travel blog. It turns out that Tim’s wonderful girlfriend also 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 was a beacon of sanity during these early months, and she added me to a CSF group on Facebook with several thousand leakers from around the world.

moochi the mini cow

I see no reason why this cow shouldn’t contribute to my rationale for attending a conference.

In the Facebook group, I learned about people’s tips and tricks for trying to “self-heal” so I could allow my own body to seal up the holes from the lumbar puncture with enough rest and limited movement. With time, I realized that sealing wasn’t happening and I started to research next steps. The problem was, the CSF leak trapped me in bed. Any upright time resulted in my brain lacking sufficient cushion due to the leaking CSF fluid; upon standing it felt as though my brain was being sucked down into my spine. I spent hours and hours of reading, feeling less hopeful by the day.

As if a simple CSF leak wasn’t sufficient, I had connected issues that arose from the leak. Excruciating nerve pain, a new, sudden reactivity to foods I had no issues with before, muscle twitching, 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, felt very toxic to the rest of the body. Other leakers I spoke with reported similar issues. The nervous system is 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.

Leakers in Canada urged me to head to a specialty centre instead of attempting to pursue treatment domestically. American leakers 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 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.

What followed was some of the most difficult months of my life.

I was lying down for 23 hours out of 24 in a day, waiting and hoping that Duke would agree to see me. The pain was excruciating moment to moment.

I felt waterlogged with sorrow.

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.

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 blood patching

Sunset in Montreal during a cold autumn evening in November.

During those months, what kept me afloat was my parents, a wonderful neighbour and her fluffy white cat, support from all of you, and the constant stream of “just checking in!”texts from a handful of closest friends. These 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

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, immediately 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 may 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 sat a little too heavily 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.

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. Yet 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.

(I won’t go on because I realize this is already fairly technical, but the spontaneous leakers like Kristin can blow leaks in their dura simply living life. These patients often have an underlying connective tissue disorder that makes their tissue particularly weak. Because MRI and CT imaging is not yet sensitive enough to easily show smaller leaks, it remains very difficult to diagnose these leakers and/or know where to patch. It often takes them years and years of misdiagnoses before they are able to get treatment for a CSF leak. These spontaneous leaking patients are a big percentage of Duke’s CSF practice.)

right before blood patching at duke

Me, in my llama rainbow shirt — a gift from my friend Honza — right before my first patch at Duke

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 and were transparent about the process of how they’d do the next round of patches. I absolutely cannot speak highly enough of my doctor. He was compassionate and kind, but also willing to answer my many questions. He still checks in once a month to see how I am doing. He gave me more faith in the medical profession after feeling so disillusioned by my treatment in Montreal.

Slow and Steady Wins the Race

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. I knew I could not do fibrin patching again, since it almost killed me. Blood patching alone, the doctors said, often took multiple attempts — and I had already tried four with fibrin. Without an exact leak location, surgery would prove a difficult sell to a surgeon; they’d have to figure out where to cut in. All I knew was that my body was very tired and very sore, so I tried my best to shelve future treatment thoughts and assure it that I was paying attention. My friend Shannon patiently talked me down from my ledge of fear several times during the post-patching weeks in early February.

It wasn’t until early March 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 pain, 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 spinal tap

I can’t complain with views like these.

The Gift of Surrender

When I checked into Duke for my 4th 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 CSF leakers 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 leaker, 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

Shannon from A Little Adrift, and me, in North Carolina. I could not have gotten through these months without her.

I did spend time mired in the unfairness of the situation, and scared of what could go wrong next. But what turned things around for me was the simple decision to change how I responded. I’m not perfect, and I fail at it many times a week. But that choice still exists, every second of every day, to choose hope instead of a fake certainty of fear.

It took a complete unraveling of my life to ante up on possibility.

Despite the stats that say many people leak and re-leak again when their first leaks are difficult to fix. 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

April 1, 2018. I took this after a short walk, marvelling at what an intense ten years it has been.

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, and every day I decide to find a reason to smile. That alone is celebration enough for me.

-Jodi