Well, it’s been one hell of a summer. I’m writing this on my phone, from Canada, where my family is caring for me. Those of you on Facebook or Instagram may have seen my limited updates during the last few months, but if you haven’t: the short version is that I ended up in the ER in New York for some debilitating symptoms, only to be discharged at midnight. I returned to the apartment I was house-sitting for only to find it had been burgled while I was at the ER. They took my friends’ laptops and valuables, as well as my own laptop, camera, hard drives, and my prescription glasses.
The good news is that I have my photos backed up online, as well as the documents folder from my laptop. The bad news – well, there’s a lot of bad news.
While many people do seem to heal just fine from a lumbar puncture, I have a few problems that prevent it. For starters, the whole “running around with the police until your back spasms” after two lumbar punctures? Not recommended. And certainly not conducive to healing. * Since publication, several doctors and the specialists have explained that not lying down that night is not a big issue as they no longer recommend bedrest after a LP.*
The punctures were to confirm that I had no haemorrhage in my brain, or meningitis causing the headaches I was getting on and off for the last two years. Happily neither of those are the case, but unhappily my spine appears to be still leaking cerebrospinal fluid. CSF leaks are not very well known, nor are they very commonly diagnosed – people I’ve spoken to have basically said they were told “you have migraines” for years, until finally a doctor was willing to take their assertion that the headaches were positional and did not respond to migraine treatment seriously.
A recent BBC piece featured a gentleman in Scotland who is still trying to fix his leak, after many years, and is mostly bed-bound.
The fix for this is usually to start with an epidural blood patch. This was something I went back for in New York, at the same hospital that performed the lumbar puncture. They cautioned me against getting one for reasons I’ll get into eventually — but suffice it to say they also told me I ought to heal up alone just fine.
It’s been 6 weeks of lying on my back pretty much all day. Still not healed. My uptime is pretty limited. And when I do lie down it’s not that painful. But the minute I stand up, the pain comes crashing down. Literally. It feels like my brain is being pushed down into my spinal cord. They call this “brain sag,” and friends it is no joke. It also makes you nauseous enough that the smell of food is not a fun experience. This is how you know how dire it is for me: I am not excited about food.
The upside to having both done a Vipassana course and also faced chronic pain over the last years is that I have learned tools that have helped me navigate this deep uncertainty. But the dark panic of not knowing if you can get better, and also knowing that doctors that can help you get better are far away is a bad combo. (CSF specialists are at Duke in North Carolina, Stanford in California, and Cedars-Sinai in LA.) My poor parents have dealt quite a bit with a puddle of a Jodi, and have tried to keep positive the times that I am not.
However, what can you do but try to take each day as it comes and focus on the silver linings? I do have quite a lot of bright spots within the tight knots of pain. For me that means the absolutely incredible outpouring of support from friends, readers, family, and strangers. The CSF leak group I joined on Facebook, suggested by a friend, where this lesser-known issue is discussed and many resources are available to learn from. The care packages mailed to me from far-away friends, full of owls and alpacas. And the advocacy of stubborn travel bloggers (see below), who blew me away with a sneakily organized Go Fund Me campaign that they then blasted all over the internet.
How You Can Help
I appreciate all the help as I won’t be able to work for quite some time.
Typographic Maps of Food
Order an early Christmas gift from my shop — Japan maps are in, and they’re just gorgeous.
Celiac Translation Cards
Know a celiac? Grab them a translation card for the country of their choice.
The Most Insane Go Fund Me Ever
Readers kept asking how to donate money and I said I didn’t feel comfortable setting up a GFM as it felt icky and I’m not dying after all (let’s keep it that way, ok?). Friends basically ignored me anyhow and made their own. Not only did they write the most incredibly moving tribute, but they fully funded the campaign OVER TWO DAYS. I don’t know what to say except I am honoured and don’t know what I did to deserve this outpouring of love. The campaign is here.
I am updating more on Facebook than here, and this site will be on hold for the time being.
I appreciate all the support, love, and prayers from afar – thank you so much. I will claw my way out of this as I have everything else that’s come my way: with as much knowledge as I can muster, trying to be true to myself, and hopefully saving some room to help others with similar issues in the future.
With love from Montreal,