The Lumbar Puncture That Changed My Life

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

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
Sunset in Montreal during a cold autumn evening in November.

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
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. 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
I can’t complain with views like these.

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
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. 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
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.

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: 2022, 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. Presently, I am “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.

When I releaked I thought it would mean I would be dependent forever day-to-day. I am certainly not independent by normal means, but clawing back some semblance of life again has been rewarding, and it has allowed me to spend some of my time working on my own projects.

Among them is a long resources page for CSF leaks (spinal and cranial) that is not yet complete. Hopefully it helps others avoid the confusion and panic of trying to figure out what was going on in my body after my lumbar puncture.

I learned all of this too late, but hopefully my writing helps inform people to have the information in hand when they need it most.

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.

How You Can Help

I get many lovely messages asking how to support me in this time. The best ways are:

  • Via a one-time support donation, below, which helps cover my business expenses and rent and allows me to help sharing free resources and raise more awareness for my condition.
  • Via my Patreon, where you can support me in my writing and work on a monthly basis. I share videos and resources for coping with chronic pain, meditation techniques that work for me, and answer questions from the community about accessibility, leaks, travel, and more. (You’ll also get a hand-drawn bird as part of your rewards for whatever tier you choose!)

patreon jodi ettenberg

Resources for Spinal CSF Leaks

 

226 thoughts on “The Lumbar Puncture That Changed My Life”

  1. if God approves & if you praying and hopefully asking what you need, your life will become better than before everything that happened, occur in the life of both of us events that cause substantially change , may vary in size apparent but it similar in it’s effects on our life, in the end, we learn that enjoy and appreciate all we have and accept the idea of dispense everything we have and accept his departure if this our destiny, and thank God after all

  2. Hey Jodi! We met many years ago at WDS. Been quietly following your journey these last many months. Thank you for sharing so openly and sharing your insights about life, living, and acceptance along the way. Excited to see where this new chapter takes you!

  3. Your words let me speechless except to say that you are one of my reasons to smile today.
    I’m following you on Instagram since a long time but when I read what could have happened that night in New York, I was jaw dropped. I’m so thankful for you that you weren’t there at the time of the burglary. And I’m really happy to read your article since it means a lot considering all your story.
    Anyway, thinking of you as always and sending you thoughts and love from France.
    Not so speechless after all…

  4. Jodi,

    Your posts are consistently about how-to-be, whether the emphasis is on how to be a persistent, resilient traveler or how to be an attentive, appreciative lover of food or how to be a courageous and increasingly wise person living through a painful, life altering experience. Your clear, articulate account of the chaos you have encountered encourages me to keep my own distressingly moments in proportion.

    Thank you for continuing to make the effort to articulate your experience. It is appreciated.

    Ann Turkle

  5. I haven’t had the chance to follow your posts for a while. Then i saw your tweet. While i’m sad that this situation has taken away a lot of what you truly love (travel and food, most of all) i think it’s more important right now that you’re recovering. I hope things keep looking up for you and that you will keep writing. Good luck and thank you for being an inspiration.

  6. Hello!
    I have been following this blog for many years and whenever I see there is a new post from you I know I will have some minutes of unexpected joy during the day. Even though this recent post is very different from your usual posts it will always be one special jewel in your already special blog. Thank you for all these years! I sincerely hope you find many reasons to smile every single day! I know you gave me a very good reason to smile today!

  7. Thank you for sharing your story, Jodi. I know it couldn’t have been easy. I remember meeting you waaaay back in the day, at a hostel in Istanbul with my friend J.J. It was the first time either us had met a travel writer in the wild! Reading your blog in the years since, you’ve expanded my definition of what travel writing can be: compassionate, curious, philosophical, fun.
    There’s a documentary I watched recently that you may be interested in. It’s called “Unrest” and while it’s more a call-to-arms for ME/CFS recognition and research, the story also touches on the painful task of redefining one’s identity after a life-altering event. https://www.unrest.film/ (streaming on netflix in the U.S.)
    Thanks again for sharing your story in your own beautiful words. Sending positive energy your way.
    – Stephanie

    1. Hi Stephanie, thank you for the comment. I think I was with my friend Earl when we met, and funny enough he stopped in today to check in on my progress here. I am glad that the site has resonated over the years, and I will take a look at the film on Netflix before I leave the US.

  8. I had know idea you had gone through all of this! Happy to see you still standing and fighting. You have been a source on inspiration since 2008 and I am glad to have met you on your first trip around the world. And to see what you have done with your life has sometimes made me feel badly about my own. But this post of a knock in the head to remind me to be grateful for everything I had and have done and can still do! Thank you and keep going and fighting! All my best girl!

  9. Wow, I’m not sure where to begin. Like many others, I’ve been following your updates on social media but this is the first time I’ve read the story in its entirety, and I know it’s the first time you’ve shared this much.

    Your writing – which I found to be incredibly beautiful and masterful – made me tear up, not only because of the crazy, almost unbelievable and certainly painful journey you’ve been on physically but also emotionally, mentally and maybe spiritually as well? I am so sorry you’ve had to go through all of this and continue to go through this as you think about what life looks like from here on out, but I deeply admire and respect your outlook and decision to find a reason to smile every day. We never know how we will handle a situation until we’re in it, but what I can say is that your strength, humility and honesty are humbling and my thoughts and support are with you. All the best.

  10. Oh Jodi this made me cry many times for many reasons. I, too, am grateful for words, and especially for yours today. Thank you for allowing us to share this difficult path with you. Hugs and love from your other favorite city, Lisbon. <3 <3 <3 Jackie

  11. Dear jodi, been enjoying your wonderful writing and photos for years. Sending u lots of healing and strength for the next months. Thanks for being so honest about your journey and reminding us how to enjoy every moment whatever the situation. Take care!

  12. What an honest, moving and inspiring story. I found it thanks to a recommendation from The New York Times daily briefing. Thank you for sharing all you have been through because I have no doubt it has been helpful to others dealing with similar traumas. It’s also a great reminder of the power of positivity and surrender. I look forward to following you on your journey and continuing to be inspired by your words. I wish you all the best, Jodi!

  13. What a beautifully written post. There is so much here that we can all learn from and apply to our own lives. Even if you can’t travel, I hope (I’m sure we all hope) that you continue writing. Your writing is a gift to people. Wishing you the best as you continue your healing journey.

  14. Five years ago, I was walking to get in shape for a trip to Instanbul with my adult children. A funny tightness in my left glut would morph over two weeks into intense pain that resulted into a deep dive into the US medical/insurance system, disability, and the loss of my job as a mathematics instructor and textbook author. Along the way, I had a leak and the spinal headache. Lucky for me, I now know from this piece, the second patch worked.

    It’s been five years. For me, acceptance of chronic pain and the loss of dreams has been quite difficult. I so recognize the sorrow and tears tamped into your few sentences of acknowledgement here. But, when my neurons quit synapsing and entropy takes my life (reading Pinker’s latest, it shows), I want to have done something with my years “after” other than bemoaning. Like you, it won’t be what I expected or for what I sacrificed. Wishing for you continued acceptance and peace, I am going to go follow you on Instagram.

    1. Thank you Laura, for sharing a part of your story with me here. I am happy that your second patch worked, though very sorry you had to experience any of it. The problem with invisible illnesses is that few can understand the disconnect with the life you knew, and how that gap can leave you reeling indefinitely. The brain fog is difficult since it often feels like the thing I most ‘have left,’ but I know it comes with the territory. All the best to you as well!

  15. Alasdair Plambeck

    This was a really powerful post to read. Thanks for sharing. My partner and I are anxiously rooting for your recovery.

  16. Wow, this is like a movie plot that no one would believe could actually happen. I shudder to think of what could have happened if you had been at home that night.

    I have been reading your blog for years and have always enjoyed your writing and unique look at the world. Lately, I have been astonished at the resistance you have despite set back after set back. This clearly shows your strength of character.

    I too am looking forward to more of your writing. Hopefully this will include many travel posts. I was also thinking of all the difficulty you had finding the information you need to get healthy again and thought that you would be the perfect person to write a book about your journey to help others with theirs.

    It would be great to celebrate with you wherever and whenever.

  17. Your writing has provided me so much joy for the past few years – I’m from Toronto (apologies) but much like you, perhaps, have always wanted to be awaaay and have managed that pretty much (London 20 years – export salesman, publishing) living in Catalunya last two or three – but now brought back by the old man’s problem, the wretched prostate. May you get back to Oaxaca soon, soon. Please keep writing, that will keep me feeling healthy

  18. Hi Jodi!
    I’ve been following your Blog for some years now and it’s one of my absolute favorites! I’m curious what kind of books you’re reading at the moment (in light of the CFS leak and staying strong throughout) and if you could recommend some? I’ve been diving into books on spirituality/meditation lately and could use some inspiration on what to start with. I’m wishing you all the best on your healing journey and am sending lots of positive energy :) Lena

    1. Hi Lena, I will write more about the staying strong part, as this has been a constant question and one I think many of us struggle with. For books, I haven’t really read many more than I had already digested. Did you see the list on the Chronic Pain post? I think that’s more of what my foundation is (see wwww.legalnomads.com/chronic-pain/ if you hadn’t). In addition to those and Man’s Search for Meaning, I’ve really enjoyed The Brain’s Way of Healing – that’s more neuroplasticity than spirituality, though. I haven’t read anything else about spirituality or meditation during these months. I focused mostly on the human brain and trauma.

  19. I was directed to your article through my daily NY Times briefing. I’m sitting here in awe of your courage and I honestly don’t know what to say other than your writing is so beautiful and I’m so grateful to you for sharing your story. I’ll be thinking of you in the days and months to come and sending positive thoughts and energy your way.

  20. Thank you for the raw retelling and clear perspectives. You give me faith that humanity’s goodness is not lost – for what you’ve shared, the friends and community you’ve grown. Surrender. Always a tough lesson but in it is peace. The next ‘step’ will come but I’m sorry not to witness you speaking at WITS. Another year, perhaps.

    1. Hi Elaine, I was so sad to back out of WITS and loved the topic I pitched for the keynote. Hopefully another year, yes! I wish you a great conference weekend in Quebec City.

  21. Caroline Clemens

    Oh my dear, I feel very sorry for you. But you triumphed! I’m a nurse and my own brother had a large gauge needle inserted for a block-anesthesia to do surgery. He had a hole and it leaked, they kept him in bed with pillows under his knees to close it off. The doctors response was the anesthesiologist was new, and used too large a gauge needle, and he tried several times. Whoa! That’s no comfort when it’s your own back. My brother felt useless, miserable, and complained of headaches for years and years. People or patients do not take medical procedures as seriously as they should. One never knows if they are getting a great doctor or not. Thankfully, a place healed you and took it seriously for the previous error. I would like to know the initial complaint-possibly you would not consent to such an invasive procedure for a headache next time?

    1. I don’t make a habit of hanging out at the ER for something as simple as a headache, especially in the States with the bills that follow. It would take a LOT to get me to the ER after years of travel misadventures. You learn how to diffuse an emergency and avoid it altogether if you can.

      In this case, the doctor went through the possibilities and options, and given I’d be flying soon I consented to the procedure.

      As you read in the piece, I fought hard to get to Duke — there were plenty of medical ‘mistakes’ made in the interim, by doctors in several different hospitals.

      The initial complaint wasn’t a headache, but thank you for making assumptions.

    2. Did you read the article? Doctors concerned about a potential brain bleed is a hell of a lot more than a headache. Sheesh.

  22. OMG Jodi…i am at a loss for words. Such a window into your world there….thank you for sharing with us all….and I am sure others going through a similar treatment will find lots of assistance in your words. All I can say is that I am so glad you are better now and working towards a full recovery. Love the long form content here on LegalNomads, and I really hope you keep it up….if it’s what’s right for you!

  23. Hi Jodi –

    I’d never heard of your blog before this post showed up in my Pocket feed. My heart goes out to you. I remember how frightening it was when, 25 years ago, my 4-year-old brother had to receive a spinal tap. At the time, I didn’t even realize what could truly go wrong.

    Thank you so much for sharing, and I’ll be rooting for you. Sending you warm, healing wishes from New York.

    1. Thanks for the comment, Stephanie. In the CSF group I joined, so many members are mothers to young kids who got leaks following spinal taps. It breaks my heart to hear about their journey. I know I felt disconnected from my body throughout, and I’ve had a lot longer to get in touch with it (and know how to communicate things about it). I can’t even imagine as a child, nor as a parent wishing things could be different. Thanks for stopping in and reading <3

  24. How does one determine, precisely, what it was exactly that changed one’s life?
    The choice to make a lumbar puncture was called for as a result of a symptom, syndrome, and decision to make the trip through the ER doors.
    That’s a lot of steps.
    And thereafter?
    And does it seem you are a better person than you were before this journey, nest-pass? That’s a lot of pretty photos.
    All the best.

    1. It’s highly subjective, of course. And since it is my life, I am uniquely suited to make that precise determination. A better person? I don’t think so. A different one, sure. Everything has a lot of steps. It’s how we decide to walk them that matters. The part of this that make it a “we boiled the egg and can’t unboil it” phenomena is clear, and that it was leads me to quite easily say it changed the course of my life of travel.

  25. Ms Ettenberg,

    I too went through 4 blood patches, after uncounted lumbar punctures over the previous 35 years. For me it was only 10 days in hell, about 15 years ago. Sorry you are experiencing this; your essay about it brought back the details!

    Writing is a good way to cope with some of the pain.

    I wish you the best.

  26. Wow, I have had several spinal taps, and am feeling so guilty/grateful that I did not go through this trauma. Just a reminder, to count every blessing, as even those things that should be NBD, can be life altering. Thank you for sharing your story, and best wishes for continued healing!

  27. WOW…. never read anything written by you before this and this is hard to digest! I did see a spinal tap done once (can you believe they just popped into a double room in a hospital and while I was visiting one patient, and had the neighboring patient roll over and jabbed a needle into her back?) and it looked awful. Might think 130x now if anyone says I might need one.

  28. Jodi:

    Thought that you might like to know that your post is now trending on Pocket (owned by Mozilla). Also, a few days ago, at his blog “Marginal Revolution,” Tyler Cowen provided a link to what he called your “saga.”

    It was interesting to read that you’ve received lots of support from parents of your fellow travel bloggers. I’m closer to their age than yours, so it’s not hard to guess how they feel. I think that it’s probably inevitable that people would want to help and protect you in your time of troubles, but there’s so little we can do, and that’s maddening.

    Maybe that’s why too many of us have told you that you should write a book. How does that help? Well, now that you’ve accepted writing as your fate, you’re going to have to accept our tiresome encouragement. On a more practical note, book sales might provide you with some welcome financial support.

    Am sending secular prayers for a slow and steady recovery of your health. Best of luck to you and your dura.

    1. Hi Dick! I appreciated all your comments on the Facebook page during this saga. Yes, I saw my incoming links this week and they are pretty impressive. I’m honoured that the post is resonating with many. The comments are also from fellow leakers, and it’s wonderful that people who can relate feel represented too. Hopefully it brings more awareness to this crazy condition.

      Many of you have said to write a book, yes. Over the years, I have met with a few agents and a publishing house or two, but the idea of writing yet another “woman quits lucrative career to travel” book didn’t work for me. With all that’s happened, I concede to reconsidering. Likely not for some time, given the intensity of writing that a book necessitates. I’m still working on the whole ‘walking’ thing.

      Thanks for your thoughts!

      1. Jodi:

        You’re too young to write a standard memoir, but the story of your past few years would capture many readers — not just other CSF leakers. Maybe you’re in too much pain to read long books, but when you’re better (I have faith), please read the memoirs of Mary Karr and Frank Conroy. Good serious books that people devour. (Not sick lit.) From them, you can get a feel of how to do it.

        I’ve warned you that helpful people can be tiresome. For now, you’ll have to take it lying down.

  29. Sorry for what you went through. I had the variant that comes on with exercise, specifically while doing a bench press, and despite the worst headache I’ve ever had didn’t go to the ER because it was a Friday night (yes, that’s dumb). I emailed my PCP the next day, which probably led her to believe it wasn’t anything serious (don’t email your physician if something serious seems to have happened).

    I went back to work on the Tuesday, barely able to move, and realised people were talking to me but I could barely hear them (I’d already noticed over the weekend that I wasn’t hearing certain frequencies). This time my physician said to get to the Mass Eye and Ear ER immediately, so I did and they confirmed bilateral hearing loss.

    Hearing improved suddenly in a few days while on a steriod burst, but never went back to normal.

    As you said, putting on socks was excruciating — would take me 15 or 20 minutes.

    When I got an MRI, and later MRA and CT scans, it was too late to be definitive. A terrific neurologist at MGH agreed that the likely cause was Spontaneous Intracranial Hypotension (SIH), and that it had healed on its own.

    I had not known that Duke had a strong program but wanted to point out that there is a renowned doctor at Cedars Sinai in LA who has a reputation for succeeding with the most difficult CSF leak cases, Dr. Wouter Schievink.

    Here are some links: http://spinalcsfleak.org/q-a-with-dr-schievink/

    https://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurosurgery/Centers-and-Programs/Cerebrospinal-Fluid-Leak/

    Best wishes to all with this very difficult syndrome.

    1. Hi Alex, I’m very sorry you could relate. I looked into all 3 centers (Stanford, Duke, and Cedars-Sinai), and based on my research Duke was the best for patching, whereas Cedars-Sinai was more for surgery. I have no doubt all 3 are light years ahead of everyone else, and many I’ve met have been patched with success by Schievink as well. I hope you stay sealed, and thanks for the comment!

  30. Your courage and determination to face whatever comes is such an encouragement to me. I am a mix of many traumas that have developed into severe PTSD. I also have been diagnosed with severe Fibromyalgia which often affects my ability to function. To listen to what you have been through, to know that you get it, especially the struggle to get doctors to believe you and find a solution, makes me feel like we could hold hands and walk thru this together. I will be reading your blog from now on. Thank you for being so real and sharing this.

  31. Hi Jodi, interesting coincidence that I came across your blog today.

    Sometimes we need something actual, or personal to us, to take place so that we realise what’s real and what’s not. You know, like putting your hand into the wet sand at the beach and smelling it while grinding the sand out of your hand so that you can realise you’re really on the beach enjoying the sunset and it’s not a dream.

    In this way I spend time on the streets with homeless people and sometimes in hospitals to realise, seeing weird and wonderful things happen that cause people to heal instantaneously or sporadically, that Jesus still saves today. Pain dissappears, broken bones are joined, people walk that couldn’t. If I did not put my hand in the sand though, I would not realise what’s real though. Brokenness remains in this world, and unfortunately I’ve seen few people die
    as well. By no stretch of the imagination can an exact science be made of it here.

    Just a note on reality, yes we could form our own based on what we perceive to be taking place, but if a body of evidence of firsthand eyewitnesses is confirmed by factual report of medical professionals in various cases, the conclusion has to point to validity of a “claim”. The truth is there in plain sight, but you’ll have to choose to find it amongst all the rubble.

    And no, as some claim, there aren’t many ways up the mountain.

    I hope you’ll find true peace and healing with Jesus as it is His intention for everyone.

    Kind Regards
    Louis

  32. Hey Jodi
    I read your post with a mixture of feelings. I was so intrigued that you left what mainstream would consider a lucrative and prestigious position for the life of a nomad. And I understand that fully, as this nagging wanderlust eats away at me each and every day although I have not the professional background you possess. I think travel is a little different for each and every one of us. I took off at the age of 19 to see a small lake in Italy that had captured my imagination each day of February, 1978 after flipping the calendar in an old farmhouse in the Peace Country of northern British Columbia. Maybe feeding cattle was a little on the boring side, but I just could not get that magical image of Lago D’Orta out of my head. Six months later I would return home to life in a sawmill where each and every day I would see the plume of a passenger jet arcing across the sky and wish I could be on it going anywhere at all that was different from my hometown.
    So I was so happy to read about your success as a digital nomad, and fully understand your wanderlust. But so saddened by this lifestyle be derailed by the intrusion of a medical ailment magnified by a common medical procedure. I was unaware that a spinal tap can carry such huge risks. Maybe the procedure should be used only in a diagnosis where the hazards are greater of not doing it outweigh those of going through with the procedure. But in any event, all I can wish is that you have a complete recovery and get back to the dream life you were living. Perhaps the only positive from your experience is that in your future life you now appreciate each and every day. My hope is that each day your body grows stronger until you know longer awake to pain and apprehension. Maybe knowing that you are loved by your community will speed the healing process.
    I send you my wishes for a speedy recovery and thank you for your wonderful, inspirational writing

    Colin

    1. Hi Colin, thanks for stopping by. Please see prior annual reviews, as they discuss a lot of what you’re asking here. I am in no rush to get back to digital nomadism given all that’s happened, but would be grateful for a day without pain! If you have additional questions after reading those posts, please let me know.

  33. Jodi,
    As a new travel blogger for mid-life professionals (and full-time writer the past 30 years), I found you for the first time in December and was drawn in immediately to your saga. It’s a breathtaking journey you’ve described. Since shit gets real for all of us, I think you’ve articulated something super important here…the whole being comfortable with being uncomfortable. I’ve read some Pema Chodra in the past, but as an “I-need-know”, Type A, hyper vigilant kind of gal, I have more work to do here and you’ve inspired me to re-commit. It can be hard to hold sheer uncertainty and utter optimism in your thoughts at the same time. I’ve been through a decade-long chronic illness myself where I watched the minutes tick by so I relate to your experience. Because of that, I can tell you that the human body’s ability to heal despite trauma, injury, and so much more is breathtaking in its ability. And so, I’m toasting to resilience today for you (and of course to those cute marsh hens). Wishing you all wonderful things in your healing journey….

  34. Dearest Jodi,
    People are incredible and help is found from unexpected places. Thank you for sharing your incredible story and the journey you encountered in recent years. Sending you so much love and many thoughts & wishing you strength and positive energy. xx

  35. Hi Jodi, Its a real life feelings, I am very much happy to know that you overcome the painful time in your life with all of your confidence. Thank you very much for like this writings. Thanks God for your come back.

  36. I am a general physician and am awed by your resiliency and ability to endure. I am a firm believer in the position that the body has ways of healing that we still don’t completely understand in the medical arena. I know all too well how to easy it is to get bogged down in the years and years of procedures, visits, tests, etc. and so I salute you and your resolve, and even more so for talking about it. We as people are all just trying to do our best (I try to truly believe that) and each story like this connects us in those hard to understand ways. Keep keeping on and keep on traveling! Thank you for your inspiration.

    1. Thank you Elliott. I really enjoyed The Brain’s Way of Healing and similar books, and agree that sometimes it boggles how much the body can take over and do so if we give it the space and right effort. Thanks for reading.

  37. Debbie Hartman McCulley

    Dear Jodi, I was very happy to read this post. I am glad to hear you are making some progress in self-healing. Walking is good! Many thanks to all your family and friends who are helping you also. My friends and I are still praying for your healing daily, and we are sending you good energy to find your way. Deb, Kate’s Mom

  38. You are truly an inspiration! After listening to an older interview with you on a travel blog, I looked up legal nomads and lived vivaciously thru your travels, then came your much needed break in NYC. Your story keeps getting more unbelievable, a rapist! A routine procedure gone awry! And to go back to the apartment to confront all that?!
    The adversity you faced (not to mention the pain) and are facing is unimaginable! But what is more incredible is how you are surviving and preserving and should I say beginning to thrive? I was first confused when you shared your acceptance of your situation, I wanted to shout, “fight it!” But now I see you have done all you could, you found the best medical help, you are doing all you can to get stronger, but you are aware of your current limitations. You are wise beyond your years, by following your truth, you have done more and risked more than most people have in their entire lifetime. Thank you for sharing your current circumstance and your talented blogging. I wish you the best and please know you are so often in my thoughts, I am pulling for you and sending all the pink light I can!

    1. Thanks Kathy. I’m a fighter for sure, but sometimes that resistance has been part of what stops proper healing for me. I will let my body lead the way, and see where things go. Appreciate you reading!

  39. Thank you for posting this. Especially today, I needed to read about the conscious decision to choose hope. I look forward to seeing how your story continues to unfold.

  40. Thank you for sharing your story, Jodi. I have been following along on Facebook, but was shocked to read about what could have happened to you that traumatic night. It’s crazy how life plays out sometimes. Your thoughts on surrendering and choosing how we respond to situations might be exactly what I need right now – thank you for sharing that!

    I am really happy to hear that you are walking and will continue to send good vibes!

  41. Jodi, I’ve always admired your positive and generous approach to life, but the grace and grit you’ve shown this past year in the face of such pain and adversity has been almost beyond comprehension. Your instagram stories of your daily walks have me just as in awe as your bowls of soup in Saigon or memelas in Oaxaca. Life is a journey whether you’re traveling or lying still, and the way in which you live your journey and share it with us is so beautiful. I have every faith that you will find a way to have that party, even if it looks different than you’d once imagined. If you open it up to readers, I think you’ll have to rent out a stadium to fit all of us who would love to celebrate you!

  42. Jodi, thank you for sharing so openly. I have read your blog for many years – I have learnt a lot from it but mainly because I love the way you write. Like you, I have a deep love for a Mexican city (Guadalajara), I travel to learn (not count countries) and can relate with you on so many levels. And even though I probably don’t comment that often, I follow your IG stories and love seeing you up and about and walking around. Sending you a lot of love and know that wherever life takes you, your community will always be there for you. I hope to join you for that party one day too.

  43. You have been an inspiration for me to pursue my travels. I hope you get thru this difficult time in life so you can continue doing what you do. Take care.

  44. If writing is your calling and your source of creativity, please keep publishing at Legal Nomads. I’ll keep reading even if it isn’t about travel. You’re a great writer with a talent for expressing things, even the complex. So, whatever you write about will be interesting to read. You could have written a weekly blog post during your last 7 months of reclining time to chronicle all you’re going through, and I’m sure your readership wouldn’t have declined. Whatever is in your head to write about will have a readership, even if it’s not about exotic, overseas adventure!

    1. Hi there, thank you – that is quite a compliment about your loyal readership. I really appreciate it. I do hope to continue writing and I missed it very much. I’m glad you’re still reading!

  45. And now I am back for my second comment, because since reading about your entire ordeal, it’s depressing that the part that haunts me most is the rapist and how close you came to being a victim. Gives me chills. And makes me ANGRY that I, too, would rather face your health ordeal that be raped. And what does that say about the horror that so many women face at the hands of men who feel entitled to do that to women. I am rage-filled about this aspect of patriarchy and the fear it implants in so many women. I hope one day men will learn to control themselves and their privilege. Okay, onto more positive thinking now…

  46. Wow Jodi, just wow. I went through shock, sadness and ended with a hopeful phase while reading your story. I am so sorry you have been going through all of this but I am with you and can’t help but think you avoided worse. I am just one of your readers and am experiencing so many emotions, I can’t even imagine what you are going through. I do appreciate your honesty and candor, it must be hard to share what you have been going through. Maybe you already answered this but I didn’t see it anywhere, what symptoms did you have in the first place that made them think you needed a spinal tap? I am thankful that we all can learn from your hardship and someone else going through the same thing will find this and find hope. Well wishes and positive thoughts coming your way.

    1. Hi Angie, they were concerned that I had a brain bleed and if so I’d need immediate care else risk much more severe consequences. Part of the problem was that they had trouble getting to my spinal fluid (several tries), and that needles used were far bigger than necessary for my size (the doctors elsewhere were shocked at the size they used). Thank you for reading <3

  47. Jodi, we met briefly on the cruise from Vancouver to Japan a couple of years ago……I missed my birthday as we crossed the International Date Line and that day disappeared.

    I have been following your stories since that time, found them very exciting and obviously very concerned about your recent problems and difficulties.

    I must say that the picture you included taken on April 1 makes you look so much better than previous shots……a smile on your face and looking at peace and upright.

    Continue with your struggles……it has taken a long time but you will eventually get to a place that matters to you and is important.

    1. Hi Keith, I was actually just telling a friend about that un-birthday bash the ship threw for those of you whose birthdays time temporarily forgot. Thank you for the kind note and for reading. I hope life is treating you well.

  48. Jodi

    I am so sorry to hear of everything you have been through, I have not been following your blog or any for a while. Your story of how you have coped with all of this are a total inspiration to me. My own petty troubles at the moment have pailed into insignificance after reading your story, but your coping mechanism and strength have given me something to think about.

    I was just about to try and sign up for one of your writing classes, but not sure if these are still happening.

    Thank you for sharing – your old neighbor on the 7th floor at Montague Street (still living there :))

    1. Hi Nicola, I remember you well! Thank you for taking the time to leave a note. I hope the building is still as beautiful as I remembered it and your troubles resolve soon. Thanks for reading <3

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