Curious About Everything: Special Edition
It's been an intense week!
Hello! It has been a very interesting few days, and I thought I would do a special edition CAE for the first time since I started this newsletter.
In the last week, Curious about Everything saw a big jump in subscribers. The influx was due to a piece I wrote about my spinal fluid leak journey that landed on the front page of CNN for an entire weekend.
I’ve also received hundreds and hundreds of messages, many of them asking questions about my condition(s). There were some similar themes within those messages, so I thought I’d address the main questions here.
I also have a Patreon update, a special offer to mark the 1 year anniversary this month. And I figured I’d dive into some of my favourite Legal Nomads pieces from 14 years of travel and food writing for the new people.
👋 A warm welcome 👋
First of all, a big hello to all the new subscribers.
For context, this what my subscriber graph looks like:
For the new readers: future Curious About Everything newsletters will follow the 'normal’ format for these emails, which are basically a brief introduction section, then a list of interesting, thoughtful things to read from around the web sorted by category.
You can see that format in my archives, here. Click on “let me read it first” and the whole archive will populate. Next month’s CAE will pick up where #14 left off.
📰 Background to ‘The Big Piece’ 📰
In earlier CAEs, I alluded to the CNN article as “The Big Piece”. It has been in the works for some time.
The piece came about when a CNN Travel editor/producer reached out after reading an Instagram post I wrote about some of the mental journey from the last 4.5 years.
Because the piece was commissioned for CNN Travel, my editor wanted me to go into my story as a lawyer-turned-travel-writer, but also to talk about the experience of isolation as framed against the backdrop of the pandemic.
It was surreal to receive screenshots like the one below from excited friends, former clients, and readers alike.
The piece was very hard to write, both physically and emotionally.
Physically, because I wrote it in increments every day. I stand to type because voice-to-text or audio dictation is just not what works for my brain in getting thoughts to paper. So I slowly wrote and edited this over time. And it was emotionally difficult as well, because there were many parts of the story that I couldn’t include due to length and readability. Narratively, it felt like doing surgery on myself.
I do feel great about the final product, thanks in part to the editors’ feedback. It made the piece better—which is why every writer is best served by a good editor.
My paragraphs about toxic positivity and grief were the sections that people quoted back at me most, specifically this one:
Toxic positivity promises that gratitude is all you need. Losing my mobility taught me otherwise. Feeling general appreciation or gratitude does not fix everything when life unspools. Worse, when illness is involved, the insistence on gratitude can be alienating, and even cause harm. Patients feel castigated for not being "grateful enough."
Gratitude is an effective tool, one among many, when nurtured as a skill. It is not a panacea for pain. And when we jump straight to gratitude without first sitting in the mess of our present, we skip a very important step.
The reactions were incredible, from the leak community, from people who know me personally, and also from strangers who found it resonant for other reasons. Many people who wrote in also asked how they can help or support me. The best ways remains (1) via my Patreon, and (2) by sharing the CNN piece, to help raise awareness for this debilitating condition.
💜 Patreon Anniversary Offer, with Annual Billing 💜
On the Patreon front: I’m coming up on my 1-year anniversary on the platform. Time flies! I started it after many of you urged me to launch one so that you could support me in a different way while I grappled with my changed physical circumstances. And while it began as pure support, it has evolved into that plus Zoom calls, AMA videos answering questions about travel, chronic pain, and more. It’s a lovely community.
I’ve only had monthly pledges previously, but many people have asked for an annual pledge option. I have enabled annual billing, and from now until February 22nd (the 1 year anniversary of the Patreon), I’ll be offering one free month for those who sign up annually.
(For those existing Patrons who want to switch from monthly to annual pledges, you’ll get the discount too. )
This offer will end on February 22nd.
📥 RIP my Inbox 📥
As I mentioned, I received a deluge of messages in response to the CNN piece. Most of them were people either saying thank you for writing it, or saying thank you and sharing their own stories of pain.
A small percentage were creepy, all of them from men, offering up their phone numbers to talk or to “save” (??) me. One even said I looked “more adorable” when lying down with my leak, than when healthy. Yikes. Those emails I do not reply to.
The rest I will slowly be answering over the next while, and I thought I’d answer some of recurring questions here.
A few of the questions I got frequently:
1/ WHY NOT SURGERY?
There are a few reasons. First, we do not know exactly where my spinal leak is, because the lumbar puncture that caused my leak was not done under fluoroscopy/guidance. So we only have the level written in my records, but no precise location. And there were multiple attempts that night, but only the successful one was written down. Therefore, I would need exploratory surgery.
I also have mast cell activation syndrome, and I have nerve clumping in my spine (visible on MRI) from the lumbar puncture and subsequent diagnostics and treatment. This nerve clumping, a condition called adhesive arachnoiditis, is known to progress with surgery and patching, but especially with surgery. As conditions go, it is described as an intractable pain syndrome.
I further have a connective tissue disorder, which is part of why my leak opened up in the first place.
With all of these risk factors, deciding to undertake surgery has a different calculus. I will also be honest: I haven’t met a patient with my facts that got sealed and stayed that way. There may be someone out there, but of all the patients I’ve interacted with in the last 4.5 years, those with similar risk profiles end up opening up new leaks after a time, either somewhere else, or in the same spot.
I hope one day the science evolves to the point where the underlying connective tissue dysfunction can be addressed. I also hope perhaps I can be one of the first that does get sealed and healed with my facts. But I would be foolish to ignore the data out there as I make these difficult choices.
2/ WHY NOT CEDARS-SINAI HOSPITAL?
In my post about the leak on my own site, I talk about 3 expert centres for spinal CSF leaks, Duke, Cedars, and Stanford.
Many people who read the CNN piece only wanted to know I had thought about going to Cedars. I did consult with both Duke and Cedars since I re-leaked, and while I was offered a patch at Cedars, I prefer to go back to the centre that sealed me last time if I do assume the risks of patching again.
My doctor there was great, and he knows my back.
Both places are excellent though.
DO YOU REGRET GETTING YOUR LUMBAR PUNCTURE?
I do, insofar as it derailed my life in epic ways. But going back in time like this really does not serve me.
Given that I did get the lumbar puncture, at least I have been able to help fellow patients and readers, and help raise awareness.
WHAT DO YOU WISH YOU KNEW BEFORE YOU GOT YOUR LP?
I wish that I knew of the factors that help make a lumbar puncture safer, particularly for petite women. I also wish I knew of the existence of spinal CSF leaks, and just how debilitating and complicating they are for the brain and nervous system. I was not fully informed of these risks; I was only told I may get a headache for a few days.
I am writing a long resources page for CSF leaks to help patients be fully informed, but specifically, I wish I knew that:
a smaller gauge needle is more appropriate for a petite frame. They used a large, 18 gauge needle for my spinal taps. Subsequent doctors were very concerned with the size used. One physician didn’t even believe me that they used 18 gauge needles until I showed him the actual records. In contrast, the diagnostic tap performed by Duke as part of my CT-myelogram was a small 24 gauge needle. (The smaller the number, the larger the gauge.)
a pencil point / non-cutting needle is less likely to cause a spinal CSF leak. The ER spinal tap used not only large gauge, but a cutting (Quincke) needle. Duke’s smaller 24 gauge needle is a Gertie-Marx, which is not a cutting needle. It’s known as an atraumatic needle, and while leaks can sometimes occur it is less likely.
the position of the body matters. I was bent over the side of the cot, so my back was stretched out. Per several studies I read, this has a higher incidence of a spinal CSF leak than lying on your side.
that the lumbar puncture should be performed with guidance, either CT-guided, or under fluoroscopy. Mine was done “blind”, with no guidance, and the specialists reiterated that this was less safe in terms of potential leaks.
that the procedure should have been done by an experienced doctor, not a resident. My lumbar puncture was performed by a resident.
that having a connective tissue disorder means that complications are more likely to occur, and healing may be delayed. I did not know when I got my lumbar puncture that I had EDS myself, but in retrospect had I known I would not have done it.
that in the initial days of having post puncture dural headache (PDPH) / spinal CSF leak symptoms, I should have made sure I was lying flat with no pillow, and that I didn’t bend, lift, or twist (BLT) at all. I did things like shaving my legs in the shower, or bending to get items on the floor. I used a normal (fluffy) pillow. Would have I been able to seal up without help? Who knows. But in retrospect, this guidance is what I wish I had at the time, so I am making mention here.
There are others, but these are the main ones as put together from the many studies I’ve read and conversations I’ve had with experts. When I finish my CSF leak page, the correlative studies will be cited as references.
HAVE YOU TRIED MEDITATING?
Yes, I even wrote about my Vipassana experience during a 10-day silent meditation course in New Zealand (I share the piece below). That course was my introduction to meditation. I do not recommend this as your gateway experience! Start smaller. Meditation definitely helps create space between my pain and me, and helps me stay grounded.
HAVE YOU TRIED GOD?
A few emails were religious in nature. I am not interested in changing my spiritual approach to life, but people were kind and not condescending so I replied politely. I appreciate that people are praying for me, regardless of whether I share their religious beliefs.
HAVE YOU TRIED YOGA?
I did love yoga and practiced daily prior to my leak. Sometimes I do yoga in my head, but physically it is no longer possible. Yoga, especially downward facing dog, is a contraindication for a spinal CSF leak patient due to how much traction it puts on the dura. Quite a few patients I know with spontaneous leaks got their initial leak doing yoga. My doctor noted this was something I would need to give up, even if I am sealed, due to my connective tissue disorder. I have done some yoga Nidra lying down, and find it soothing.
ARE YOU ON DISABILITY?
No, I am not on disability.
My income comes via my celiac translation cards referenced in the piece, my e-commerce shop where I sell hand-drawn maps of food, and my Patreon.
The Patreon is the newest addition, almost a year old.
WHAT ARE YOUR NEXT STEPS?
As I said at the end of the piece, I hope to return to Duke when my body / immune system is stable enough to do so. Duke did offer to patch me when I re-leaked, but I held off because of how sick I was in other ways. Given that the patch did work by sealing me for 8 months, I feel like I ought to try once more eventually.
I did not want to do so when I didn’t have the best chances for healing, which is why I’ve been wrangling my mast cells into a calmer place for the last many years.
This patch is likely to be blood only given that I went into anaphylaxis on the table during the 4th fibrin patch I had. Will it work? We don’t know. Will it make me worse? It’s possible. There is a risk of worsening the nerve clumping in my spine, so it is a decision I don’t make lightly.
OK, BUT WHAT ABOUT TURMERIC?
I have not been living under a rock, and do know about turmeric, but thank you for asking.
📝 Best of Legal Nomads (if you’re new here) 📝
Given how many new people there are on this list, I wanted to share some of my favourite posts:
Northern India: The Good, The Great, and the Ugly (2015): A very long post about my weeks in India, from the good to the bad, to the many quirks in between. I visited with my mum, as a gift to her for her 65th birthday. It was hard to synthesize a sprawling region into one long post, but hopefully I captured some of the many fascinating, and frustrating, things about my time in Rajasthan.
How to Make the Most of a Repositioning Cruise (2014): A group of 10 friends on a 15-day boat trip across the Pacific—what could go wrong? This trip ended up as a mix of business meetings over lunch (we called these “blunches”) and complete and total silliness, so much so that passengers on this ship thought we were official entertainment. Nope, just a bunch of entrepreneurial misfits.
Watching a Solar Eclipse from a Ferry in Myanmar (2009): a very interesting, fun journey down the Irrawaddy river. It included karaoke with the captain blasted over the ship’s PA system, and much more. Before the elections that opened Myanmar up (temporarily), I spent 7 weeks in the country with very few other tourists, and this river trip was part of my time in the country.
Japan in 77 Photos (2015): A very long photoessay from several weeks roaming and eating my way around Japan.
Fishing for Socks in Lisbon (2015): A kind neighbour, language difficulties, and the hunt for a lost woolen sock.
Most Embarrassing Stories from my Travels (2016): Exactly what it sounds like. This one is a crowd fave hah!
What does Off the Beaten Path Really Mean? (2012): I often received emails asking where “secret” places are that my readers can visit. Having authentic travel experiences requires an open mind more than an “off the path” space; it is less about somewhere no one else has gone to and more about your ability as a human to connect with those around you and forge meaningful interactions. You can do this both at home or abroad.
How to Eat Street Food Without Getting Sick (2016): This is one of the most frequent questions I received over the years, so my tips are front and center here.
A Brief History of Chili Peppers (2015): A fun deep dive into one of fiery foods we love.
Pleading for Bun Rieu Soup in Cai Rang (2013): one of my fonder memories and a great morning adventure in the Mekong Delta, where I was unceremoniously refused soup by a vendor, only to have a granny come and intervene on my behalf.
The Legal Nomads Guide to Saigon Street Food (2014): I couldn’t leave out a long post about what to eat in Saigon! This was many months of planning and has turned into a great way that I can ensure my readers eat well even if I am not in town to feed them.
My Vipassana Meditation Experience: Spiders and Silence (2016): The 10-day Vipassana course was one of the hardest things I’ve ever done, but one of the most critical as I’ve managed the mental aspect of my leak journey. Follow it up with my free 10-week meditation course, which explores different types of meditation so you can find the one that works best for you.
Learning to Cope With Chronic Pain (2016): This piece includes tips for coping with chronic pain, and was written before I knew why I was in pain myself. Now, I know the pain relates to a connective tissue disorder and a mast cell disorder. But how I cope with it hasn’t changed from this earlier essay.
On Homesickness and Long-Term Travel (2012) Can a person with no fixed home get homesick? This is a question that has cropped up frequently during my many years of travel. This long post discusses what it means to be homesick when you’re a modern nomad, and whether you lose the ability to feel truly attached to a destination if you keep moving every few months at a time.
The Overview Effect, Mindfulness and Travel (2012): When an astronaut sees the earth from space for the first time, he or she is often overcome by a profound feeling of connection between humans. The Overview Effect refers to that feeling, one that astronauts have said has changed the way they see earth forever. This post uses travel as a more reachable version of Overview Effect, one that can engender similar feelings of connectivity and fragility for those of us who cannot go into space.
On Facing Fear and Learning to Sail in New Zealand (2015): I felt into the deep end of a public pool when I was a toddler, and have long frozen up when I am on water. After a lifetime of trying to keep that fear at bay, I confronted the fear of drowning by taking a 5-day sailing course in New Zealand’s Bay of Islands. This piece talks about my personal struggle with water but also about fear generally and the psychology behind it.
That’s it for this special edition CAE!
Back to regularly-scheduled programming with Curious About Everything #15 next month.
Thank you for all the kindness and care as this article hit the web. It’s been such a treat to see so many of you excited to read and share it.