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.

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