CSF Leak Update: Learning to be the Tortoise, Not the Hare

I’ve received many very similar emails and DMs during the last few days.

“Jodi…?” the messages start out. “I don’t want to bother you but it has been a long time since you posted, and I’m really starting to worry.”

“Jodi: blink twice if you’re ok?”

“Jodi, here is a llama walking into an optometrist’s office in France. I thought of you! Also, ARE YOU OK?”

In a world of easy access to people’s inboxes, readers have only been a pleasure, a virtual cloud of warmth and never a burden. And when so many of you ping at once, I know I am due for an update. In this slow bedrest state, life feels like a woozy Groundhog Day. I love the filaments that connect me to so many of you, reminding me not to lose track of time entirely. I am so humbled by your care.

***

When I was a kid, my mother said my first word was – as expected – a word. Instead of continuing along those lines, apparently the next thing I said was a sentence: “see car go by.”

“And then,” my family jokes, “she never stopped talking!”

Being at a loss for words is not a problem I normally have. But yes, I have been very lax at updating because it’s been hard to find words for what I’m feeling.

A Leaky Anniversary

January 26 was the one year anniversary of the patch that sealed me last year. I had a really rough and heart-wrenching time reckoning with where I am on this anniversary. Instead of scaffolding off the slow and arduous recovery that followed the anaphylaxis and procedure, I am in bed.

Again.

For many months.

If you’re just tuning in, the CSF leak that sealed up and was healing reopened because I sat on the ground. Gingerly. Not even enthusiastically. I went from 4-5km walks a day, to no walking in record time.

At first, I was in extreme denial that something so small, so inhibited could blow out the scar tissue that had months to form. But one by one, each symptom I had in 2017 came back. I keep detailed daily logs of every symptom, supplement or medication, and food. I couldn’t deny what I was experiencing.

Then, the grief. The anger. The deep sadness, the kind that suffocates all hope.

We learn about the “stages of grief” in popular culture, but what happens when they just cycle over and over? When you think you’ve come out the other side and can breathe again, when you tilt your face up at a brighter-than-you-remembered sun, only to find that you’re back in the dark?

***

My body, when I releaked, was in far better shape than the initial leak in 2017. Labs last summer showed improvements and lower inflammatory markers. I tried to stay positive. My friends and family came to visit. My inbox overflowed with llama photos.

As fall turned to winter, I saw some wonderful improvements. I stopped having the “brain sag” of my brain smushing into my spine due to low pressure. I moved into “high pressure” again, which is usually a symptom of the leak starting to seal over — the extra CSF produced while leaking backs up against the hole now tentatively closed. I started on the meds to lower intracranial pressure to prevent the fragile seal from bursting due to pressure. I felt cautiously optimistic.

And then a few weeks later in mid-December, I had an awful nightmare in my sleep. I remember it perfectly. And I also remember what woke me up: the excruciating pain in my back.

After an epidural blood patch to seal a CSF leak, the discharge instructions note that there’s to be no bending, lifting, or twisting for many weeks, but also that coughing or sneezing can blow out the patch due to intrathecal pressure. Many fellow leakers have blown out their patches — a clot or glue covering the leak temporarily while your own body can heal with scar tissue underneath — from constipation (pushing), sneezing, coughing, laughing.

Suspend your humanness while you can, the unsaid instructions whisper. Don’t do anything that can compromise this seal.

In my case, this nightmare I had blew out the seal and I was back to square one.

The Roller-Coaster of Ups and Downs

It is difficult for me to express the crazy-making nature of this condition.

In many cases, there is no imaging available that is sensitive enough to show a leak. Misdiagnoses are common. Imaging such as MRIs or more invasive testing like a CT-myelography turn up normal in an alarming percentage of cases. And normal imaging, the leak experts have learned, does not exclude a leak.

So the best way to know if you are leaking is via your symptoms or your story. In my case: I had none of these symptoms prior to a lumbar puncture, and have not been functional since. But the difficulty of external corroboration and testing only exacerbates anxiety about what may or may not be happening in your body. It is a very tough, very exhausting dance to undertake. I have struggled the most with this balance of attempting to stay in touch with my body while also uncurling my clenched hands from the eventual outcome. Science tells us that focusing ad nauseum on our pain can magnify it in our minds, hence the usefulness of mindfulness and other meditation.

When your condition requires a focus on pain, and you also know you need to stay equanimous to heal effectively? That is a total mindfuck.

***

In mid-December, a close family member took a turn for the very worse. The funeral was around Christmas. I was too unwell to attend. Combined with the Re-Re-leak, I spiralled pretty solidly into a very bleak place.

If I’ve learned anything in this madness, it’s that staying in the black hole of despair is not how you heal. With the crutches of visits and calls from close friends, someone to talk with who specializes in grief, and the tools I’ve drawn on at the worst of times, I was able to wrench myself to a better place.

But still, I am not sealed and healed.

***

I put off Duke when I re-leaked because of what happened during the last round of patching. There is a lesson about anxiety in that procedure too: in my most creative of nightmares, I never imagined anaphylaxis as part of what could go wrong.

But it did, and while they will not use fibrin glue again (suspecting that was the cause for anaphylaxis), I’ve written about how my body seems to be stuck in that very reactive, anaphylax-y place. My mast cells degranulated all over the place and LOVED it. They seem to enjoy doing so again and again since, not only to foods but also smells – and even hot showers.

Given how pear-shaped things went last time, I wanted to give my body a long chance to seal before committing to another procedure. When I did seemingly seal up in November, I was so thrilled. It didn’t (and doesn’t) matter to me if it takes a long time, though my parents have the patience of saints. If slow and steady was the way, I was ok with that as long as I sealed up.

I will be honest: my turbulent December and January have tested the limits of my capacity for grace and patience and hope. I have been on bedrest for quite a few months. While I’m not bored, the pain levels are pretty unconscionable and keeping my spirit up has been a mighty challenge.

From my own calculus: if I do need to go back to Duke, I want to know I gave my body a full shot.

That way, if – IF – things go awry again during a procedure, I won’t be able to look back and say, “should have given it a bit more time.”

***

So where are we now? It’s February, and long term readers know this means my favourite holiday in the world: Vietnamese lunar new year or Tet. An amazing reader named Wendy just sent me a pic of lamp in my name from her family’s temple in Malaysia, a New Year wish of health and prosperity. Lunar new year was always a time for reflection and cleaning and cleansing during my time in Asia. I’ve kept that spirit during my return to Mexico and Canada with small celebrations to welcome the next calendar.

New Year starts in a few days, and with it I hope a better climate for healing.

I have seen such progress since the re-leak, progress I didn’t see when first in bed in 2017. I keep flipping into high pressure as it starts to seal, then unsealing. It may be that I need intervention after all, but I still have hope that the JodiDura-that-could comes through this winter. I’m eating a strict and healthy diet, meditating, visualizing, consistently working to bring my mind into a better space.

If I can’t seal during the winter, it certainly won’t be because I didn’t try.

Learning to be the Tortoise

There once was a speedy hare who bragged about how fast he could run. Tired of hearing him boast, Slow and Steady, the tortoise, challenged him to a race. All the animals in the forest gathered to watch. Hare ran down the road for a while and then and paused to rest. He looked back at Slow and Steady and cried out, “How do you expect to win this race when you are walking along at your slow, slow pace?” Hare stretched himself out alongside the road and fell asleep, thinking, “There is plenty of time to relax.” Slow and Steady walked and walked. He never, ever stopped until he came to the finish line. The animals who were watching cheered so loudly for Tortoise, they woke up Hare. Hare stretched and yawned and began to run again, but it was too late. Tortoise was over the line. After that, Hare always reminded himself, “Don’t brag about your lightning pace, for Slow and Steady won the race!”

The moral lesson of the Aesop’s “Tortoise and the Hare” fable is that sometimes you can be more successful by doing things slowly and steadily than by rash action. The race (of life) isn’t necessarily won by the fastest or strongest animal, but by those who persist in the face of obstacles – including the obstacle of time.

I undertook my life in the stubborn spirit of the hare.

I went to law school straight from grade 13 (CEGEP, in Quebec) because someone bet me I couldn’t get in. I took a job in NYC because on my first day of law school, someone said, “you don’t deserve to be here. Go back to high school where you belong. And don’t bother getting a job in New York City – you’ll never succeed.” When I quit my law job, it wasn’t for a two month trip, it was for an open jaw adventure to Siberia that unfurled into a glorious and food-filled new career.

My identity for years was the lawyer who quit her job to eat soup. As I’ve laid in bed on and off since 2017, I’ve watched the travel industry and my fellow writers move on with their lives. Mine feels very stuck. I am very unused to not being able to solve problems by DOING, and it is a monumental shift in my mindset. Above and beyond the leak, my health will require a different way of approaching work.

Apparently it’s time to be the tortoise.

csf leak be the tortoise not the hare
Tortoise pic from one of the first adventures in my round-the-world trip: the Galapagos Islands in Ecuador

I’m still feeling around the edges of what that means for me. Sealing and healing will require me to change a lot about how I approach work and achievement, because excessive doing is a surefire way to undo my progress. There’s a lot here I hope to write about in the future, about learning to get under your mind and into your heart.

About listening to your body before it’s too late.

About not necessarily taking every bet that comes your way as a life challenge.

For now, though, I don’t know what I will redefine life “as.” I trust that it will unfold in its own way. While mourning the life I had, I also feel curious about what comes next.

But first: this leak in my spine needs to be firmly sealed for me to get walking again.

***

Thank you all as always for the caring notes, the questions, and the overwhelming support and love. I am extraordinarily lucky to have such a robust army of cheerleaders around the world.

Many of you have dedicated your meditation practices to my health, and for that I am grateful. I do plan to restart the group meditations next week, on Sunday February 10th. If you are interested in joining, the first 7 weeks are here, and you can enjoy any of the meditations as the tracks are all on that post.

I have been meditating alone here, but with all that unfolded I couldn’t manage the group ones during the holidays. I appreciate how many emails I’ve received asking when they’ll restart, and I am so glad many of you find them helpful and a source of light.

I haven’t written publicly in a long time, but typing this post out with my thumbs felt very good. I missed it. And though I would still be writing if no one was reading, I’m glad to go through this very tough journey with a community like you to help make things better along the way.

Jodi

74 thoughts on “CSF Leak Update: Learning to be the Tortoise, Not the Hare”

  1. Thank you for the update. I wish your healing was going better. I hope that writing about it helps. I also hope you are back to Instagram stories updates soon. We miss you. Best wishes for healing!

  2. Thanks so much for posting. I’ve been wondering… and yet, I want to state the obvious…. you don’t *owe* me (or anyone) updates. Still, though, sending comfort and healing, as always.

    1. Thank you Andy! No one has made me feel like they are owed an update, though I appreciate you saying so. When readers check in, it always comes across from a place of caring, which is truly lovely.

  3. I’m sorry to hear about your continued health challenges Jodi. I wish there was more your readers could do to help you. Even though this difficult time, your words coming from your experiences continue to teach us about new phases of life. Be well my friend.

  4. I’m so sorry you’re struggling. I wish I had the magic answer to make you heal, or even the magic words to boost your spirits. I can only imagine how difficult this must be for you. We’re all thinking of you!

  5. Seriously? Someone said that to you on your first day of law school? What a complete ass. I wish I were surprised. There were so many cool/funny/interesting people in law school, but then there was that small subset of…well…asses.

    1. Yes, there were many people I loved and stay close to till this day, but the asses were…. memorable. This person comments and interacts with my site now; I wonder if they remember? One off the cuff remark from them, yet a lifelong imprint for me.

  6. I’m a baby boomer which means I’m in a demographic that has been around for awhile. One thing I’ve learned is that while it is certainly true that “life is A ‘trip'” (in the 1960’s sense of the word), in fact, it is made up of a series of journeys, some better than others. Yours is one of the first travel blogs I started following back as newbie travel blogger in 2012. Legal nomads especially resonated for me because I considered myself to be a “recovering lawyer”. (Now I consider myself an “almost recovered lawyer”.) I’m not really a food person (although I do share your fondness for soup), but your evocative writing kept me engaged and caring. If it’s any consolation, while your latest journey’s itinerary is one I hope to never have to follow, your willingness to share the bad, the worse, and the ugly (along with the occasional glimmers of hope) has kept me engaged and caring. There’s a book in there somewhere. Please sign me up for the pre-publication reserve list. Write on, Jodi, and Godspeed.

    1. Thank you Suzanne! I know your name well after years of your kind comments, and I appreciate that you’re still here. You’re not the first to ask about a book. Time will tell. Thanks again :

  7. Oh Jodi, I’m at a loss for words. But – keep going, girl! Sending you virtual (gentle!) hugs, maybe the healing go better, even if slowly.

  8. Thanks for the update. I am going to keep on sending healing thoughts and energy your way, and will continue to hope for sealing, healing, and future mountain climbs.

  9. Oh, Jodi, my heart breaks for you! Sending prayers and healing wishes for your recovery. I wish that you didn’t have to go through such a struggle. I’m convinced that your unbelievable strength and ability to celebrate the baby steps will see you through!

  10. Can’t tell you how sorry I am that this leak problem continues. I loved reading your blog for years and so miss your engaging travel stories. I am glad to see your posts these days on social media and am glad we got an update. You are so strong with your tortoise message and can’t believe your resilience. I will be one of the group that is putting prayers, good thoughts, or whatever toward your recovery.

  11. Thank you so much for the update. I was thinking (and worrying) of you a lot yesterday, so I was very relieved to see this in my feed. People around the world are championing for you – it will be a wonderful new year!

  12. ack, what a pain the you-know-what (and back, and brain, and heart…)
    there are legions of us who miss you and wish you health and recovery
    by the example you set, in the fight you are fighting, the good and the bad, you remind us to appreciate what we have and be gentle with the folks traveling this life with us…
    virtual hugs and complex spicy bowls of soup to you!
    and lots of love to your folks and other close caretakers – it must be very hard to see their girl suffer

    I haven’t seen mention of this, but if you need the gofundme or whatever to start back up, to help, please have your friend restart it

    1. Beautiful comment. I haven’t started the GFM again, and not sure I feel comfortable. I appreciate your willingness to help! I’ve been thinking of other ways but for now your care and healing thoughts it plenty.

  13. Dear Jodi,
    I am so sorry to hear your are still struggling with this. Your stories have always brought such pleasure to me, and though the current chapter brings me no joy, you are still inspiring me with your courage and honesty. It’s a cold and rainy night here in Honolulu, but I am going to go out and find a star to wish upon for your healing.
    XOXO

  14. Ah Jodi, not the update I was hoping for for you. Not sure what to say really, except to keep on keeping on, you are doing everything “right” and try and imagine the patience you will have when you get healed from this. I second the comment above about the GoFundMe-I don’t donate to them unless I truly believe in the cause, so if people aren’t comfortable donating that’s up to them, just as others would love to help out financially if we possibly can.

    On the subject of the book, perhaps you could use chat to text and make it a bit trickier for Mike to proofread. ;) Wishing you all the strength in the world, keep reaching out. Melanie. Xx

  15. So sorry to hear that your health still isn’t what it should be. Your posts have had such a positive effect on so many people around the world and I hope all their support will help you heal. I wish you all the best in this process! x

  16. Jodi so nice to hear from you and understanding what a process you have been going through. I have had a miserable year of immunotherapy and side effects. The alternative is worse so I am grateful to good doctors and new therapy. Good luck to you. Joan

    1. Thank you. The bulk of the site is not-leak related (and more travel and food related!) but as with the other writings, I always try to paint a full picture for my amazing community of readers. Welcome!

  17. As I read this message the Lord simply uttered these passages..
    James 1:4 “But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.” Praying for you!

    3 John 2 “Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers.

    Jeremiah 33:6 “Behold, I will bring it health and healing; I will heal them and reveal to them the abundance of peace and truth.

    1. Many readers have prayed from the Buddhist temples of Malaysia and Thailand, to mosques in the Middle East, to churches in the west. I welcome them all, – after all, we are all energy and all the same at a micro level regardless of who we have decided to pray to.

  18. Hi. New to your blog via WP Reader. Such captivating writing skills, I read every word. You have a beautiful talent and spirit too it seems.

    I’m hoping your situation will continue to improve. Best wishes

  19. I really liked your post and could relate to the whole rollercoaster and being a tortoise just too well.
    I had 2 hip surgeries which took three years to recover from. This is where the tidious, rollercoaster and being a tortoise comes into play. I had a good recovery but incredibly slow.
    Then I broke the hip alltogether and not only started back at square 1 but with a tougher and slower recovery than before. I am the CEO of the tortoise club.

    My story is different than yours but I hear you. I wish you well in your journey.

  20. Id rather be the tortoise not the hare meaning I would rather take my time in life to achieve my goals and stay winning than to rush to my goals and lose.

  21. I feel the same with the way I see my life as being “stuck” and how it seems like I’ve watched others pass me by. It’s something that’s been thrust upon us thanks to the high demands and expectations of our society. Like a voice engrained into our heads from our very early years whispering that we’re never trying hard enough. Even when you give yourself a break when you decide you need it – not one decided by someone else when you’ve “earned” it. It may seem cliche to say it but unfortunately it’s the truth and can not be stressed enough.

    I’m sending warm wishes your way and I hope you know that you’re always trying your best. The best differentiates each day and you can only do so much. I admire what you have done so far :)

  22. Keeping yourself motivated is not an easy task. But if we are reading motivational stories like this. It helps us to keep a positive mindset within us.

  23. It is always a reminder to be vigilant…and it is none other than the “tortoise and the hare” story, to revisit whenever you feel self-righteous and deviate from the normal.

    Thanks for the lesson!

  24. I wanted to thank you for this perspective. It is one that I am trying to hold as my 20 year career comes to an end and my life as a patient begins to take over, at least for the foreseeable future. recovery will be slow, but worth it.

  25. Thank you for sharing. We must change our thinking that our value comes through our achievements. I’m learning this myself. I look forward to reading more. I’m wishing you well!

  26. This really hit home for me about being the tortoise. I have had ulcerative colitis (a bowel disease) since 2013. I just recently had a horrible flare for the first time since diagnosis that put me on bed rest for the whole month of January. I still haven’t been able to start my last semester of college and just attempted my first day back to work yesterday.

    You are incredibly strong and though I just found your blog you’ve already inspired me. I’ve been reading this book about positive thinking and being intentional about our thoughts and my favourite quote so far is “any day we don’t give up puts us one day closer to success.”

    Keep going! I choose to believe your success and healing will come!

  27. I’ve been binge-watching and reading your interviews and writing. You are truly such an inspiration. Please stay strong and keep sharing your zest for life – will be keeping you in my prayers.

  28. I love the story of the “Tortoise and the Hare” It always reminds me that life is not a race, but it is a journey to enjoy. Never get in a rush because you see the life of the other people, each and every one of us has own timeline of success. What matter most is how you race.

  29. Wow, thanks for the update Jodi. Not sure what to say. Just hope your recovery continues to go well. My belief is that there is a plan in this. It may not always be the plan we choose but our lives are never without purpose. Even in suffering, slowing down, and struggling I do believe there is hope and purpose in this. May you continue to heal and live life as vibrantly as possible!

  30. Sending you love. Your posts on gluten free travel through Asia have been invaluable to me. I had been so scared of trying to eat there but now it is a place I love. You were a big part in getting me out there to try things. Thank you!

    1. Thank you so much, Brook. That’s wonderful to hear <3 In this messy time of rest and reflection, I'm really lucky to have the people I've helped come out and tell me so. Many of us don't get that kind of feedback in our lifetimes, and as I lie here in bed it has bolstered my spirits considerably. Wishing you many wonderful, safe meals in the coming years.

  31. Came across your website today via your post on Vipassasna meditation and my heart breaks to hear everything you have been through. Sending positive energy and thoughts. Hope you will be back to traversing the globe and enjoying soups in no time.

  32. This is very moving. I came to your blog looking for information on detainees and realize that the work really always be there, but we may not. The world continues to rotate even when we stop moving. I’m that much closer to decisions I should have made years ago because of your story and openness. Thank you.

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