Curious About Everything Newsletter: FAQs
A temporary departure from the norm with a frequently asked questions newsletter.
I have neglected to post on Legal Nomads since November for health reasons, and I’ve since received many questions about what’s going on in my life.
I figured I’d answer a few of them here.
For the new subscribers: this isn’t the norm for Curious About Everything newsletters. You can see the usual format here. Many of these questions relate to my having a spinal CSF leak, a condition that leaves me primarily bedbound.
Next month I shall return to a curated linkstravaganza. Don’t worry, I’ll add a few links at the bottom!
FAQs, Early 2022 Edition
How do you handle the ongoing grief of your conditions, knowing life is different now?
This is probably the most common question I receive, or a variation of it. The questions usually come with a paragraph about how it’s not just that I am in pain all of the time, but also the fact that my life as I knew it came to a skidding halt when I got that lumbar puncture in 2017.
While all of this is true, I do want to start off by saying that I was a total mess for many, many months after that procedure. And really, who wouldn’t be? I would be suspicious of anyone who was able to simply pivot into a new mindset and move on.
When talking about coping with grief, though, it’s important not to gloss over that state of bereft overwhelm. Skipping past this stage ekes into toxic positivity, and only serves to minimize the validity of a very confusing and painful time.
I’ve mentioned elsewhere that I couldn’t have gotten through these last few years without the help a grief therapist. While some patients look to therapy that supports a state of chronic pain, I have found that it’s the loss—both the big ones, but also the small ones, an ongoing pummelling of “oh, I can’t do this either”—that tend to bring you to your knees. (Not literally, since I can’t bend down anymore. But you know what I mean.)
There’s a mentality in some cultures and circles that a stiff upper lip is what gets you through tough times. I disagree. The way to wherever I’ve reached now, which some of you call resilience and others call strength, comes with consistent processing paired with a determined reframe, and a healthy dose of humour.
Without the processing, I couldn’t effectively reframe the present moment. And without the reframe, I’d only be mired in the negative.
Together, it has allowed me to move forward mentally while I can’t physically. It hasn’t been easy, and it remains not easy. My brother is getting married in August, for example, and I had a good cry about how little I can participate compared to what I would have wanted.
The grief continues, in all of these little ways, but the reality is that I am where I am—and staying focused on the grief doesn’t help me feel better.
So the TL;DR of the question is:
I found a grief therapist to help me deal with the loss of the life I built, and my identity (travel and food).
I allowed myself to feel like absolute balls for a time, and when new things crop up I do not beat myself up for feeling a rising up of grief again. It doesn’t mean you are going backwards; it means that you’re still working through.
I work on reframing the moment to focus on my reactions to things, as well as the things that I can actively find joy in. This is eternal work, so it’s best to see it as simply “how life is” and not “something you have to do.”
I keep connecting with the people who understand this roller-coaster, or have these conditions, in addition to the friends and family who I love.
Keeping humour a part of my life, even if the jokes are different than they used to be. Memes help.
What do you do about people who can’t understand why you’re not better yet?
This is from a reader who has a different, also chronic and progressive disease. Their family couldn’t understand why, despite treatments, she was still struggling and needing help on a day to day basis. "
I try to give people the benefit of the doubt and explain that it’s like other conditions where surgeries or treatments are hopefully permanent, but in many cases the disease returns or someone needs another procedure. There are people where blood patches or a surgery for a leak works. They can move on with their lives in full.
Sadly, I am not one of those people. This is due to underlying comorbidities, sure, but there are many of us who are complex and aren’t finding a lasting seal in the procedures available.
If someone is still demanding to know why I’m not healed yet, I tend to disengage. They aren’t listening; I can’t spend my bandwidth defending why I have a hole in my spine but “my sister’s friend’s mother” does not, you know?
Why are you moving to Ottawa?
I am not able to live independently with my ongoing leak, and require help once a week. My brother and his partner are the people who’ve stepped up to help me, and I wanted to move closer to them to make it easier for them to visit. I also want to be in Ontario because, anecdotally, people with my constellation of conditions have found it easier to find care than in Quebec.
I saw on Instagram your apartment fell through. What happened?
Thankfully things worked out! In Gatineau, my landlord lives close by, and has kindly popped in to help when I need it. But that’s not the case normally! So I wanted a place with someone at the front desk during most hours. I also wanted to be walkable to the grocer, not too far from the canal for a wander, and in a safe part of town that wasn’t under huge construction.
I found a great unit that had the set up I wanted at a price I could manage. But when I finally got keys, it turned out that the unit was under the mechanical penthouse, where the water coolers and life safety equipment were for the building. With the vibrating hums of the equipment, I knew I couldn’t stay. Thankfully, since they didn’t inform me of the mechanical penthouse before I signed, I was able to cancel my lease without penalty. Also thankfully, there was another unit in the building free and it worked for me.
So: I do have an apartment and will be moving later this spring. Yay! I have no furniture other than a mini-freezer, because I’ve been living in furnished places since 2008. So it’s been fun (and overwhelming!) to put together a home for the first time in a long time. Many IKEA boxes, and trips to Dollarama, in my future.
Why did you not get leak treatment in Canada?
A common question. For starters, at the time I was a non-resident of Canada so it’s not like I had access to a family doctor or referrals to specialists. An ER visit in Montreal was fruitless; I was told I simply had migraine headaches despite the fact that I had no history of them (and that my “brain sag” started right after a lumbar puncture with large needles).
I was urged by the Canadian leak patients I spoke with to try and refer directly to a specialist center for leaks. The closest for me was Duke.
The other reason I kept returning to Duke instead of finding local treatment is that they suspect my leak may include a ventral component. That is, that the lumbar puncture went through my dura to the front or side. Duke pioneered a transforaminal approach, where they use needles at an angle and coat the entire dura in 360 degrees with blood / glue.
While Duke has trained other hospitals and doctors in this procedure, and the other specialist centers (Cedars and Stanford primarily) now do it as well, I am not aware of any doctors in Montreal who perform this kind of patching. With the risks involved, I preferred to go to the people who pioneered it if I could. Thankfully they accepted my case.
Why did you not go back to Duke yet?
I answered this in my “Special Edition” CAE when the CNN piece first came out, but essentially I wanted to first stabilize my mast cells. Mast cell activation disorder can degrade connective tissue, and delay wound healing. Both of those factor heavily into the success of a blood patch, especially given that I can’t use fibrin glue again due to the severe anaphylaxis last time.
I already have some nerve clumping in my spine from the leak diagnostics and treatment, and minimizing the progression requires my body to be as stable as possible if I return for another patch.
(For those new to this newsletter, you can read about that blood patching experience, and how I went from a nomadic life of travel to bedbound, here.)
I think I have a spinal CSF leak. What should I do?
For starters, check out the resources from the Spinal CSF leak Foundation in your area, if there is one. For USA, go here. For Canada, here. For UK, here. Reach out to these places as well, as many can recommend a center that is more familiar with spinal CSF leaks.
Feel free to message me as well, and I will connect you to a private a Facebook group of leak patients who are extremely helpful and knowledgeable.
Have you forgotten about us celiacs?
No, never! I still sell celiac translation cards (see below), and I run a robust Facebook group for fellow celiacs who love to travel. I brought on two moderators because the group has grown so much.
While I wish I could dedicate more time to the celiac community, I am very glad that I can still be involved. Celiac disease is the “least” of my issues in that I’m so used to it, and have lived with it for decades. Plus, many foods these days make it a lot easier to eat strictly gluten free! But I can credit adjusting to this disease for the reason that I’ve been able to more swiftly re-jigger what I eat due to the inflammatory immune condition I now have (mast cell activation disorder, or MCAS).
I also think it’s important to note that celiac disease is commonly comorbid with connective tissue disorders, and MCAS, as well as other conditions that “cross paths” with spinal CSF leaks often. That’s not to say that it’ll lead to a leak, but that it means complications may arise with more frequency.
I’ve been grateful to use the platforms I’ve built to help raise awareness not just for the other conditions, but to share the risks of them with fellow celiacs. Always good to be informed.
How do you make money now that you can’t travel?
Were I still a lawyer and I became bedbound, I suspect wouldn’t know where to start. But with a decade of location independent work, I had a few products (see below) that I built for my readers and that sold passively.
With the support of my community, I was also able to shift to a Patreon membership site, and that is my primary income right now. While it isn’t enough to save for the future (yet!), it covers my rent and most of my expenses.
I talk about how I make money now on my about page, here, but briefly:
Patreon: I share more frequent updates, do Ask Me Anything videos about chronic pain, and generally receive support / income at a time where I can’t work like I used to.
Celiac translation cards: I started these many years ago, but they are still selling. They dropped off entirely during lockdowns, but have picked up again recently. These were the first celiac cards out there to account for cross-contact/cross-contamination, and some the celiac bloggers also sell them on their sites as affiliates. I have 12 languages, with a few more in drafts (that I’ve been too sick to finish).
Hand-drawn maps of food: I created the first map, for Vietnam, because I wanted to buy a map like it for a gift — and it didn’t exist! So I decided to make it myself. The plan was to keep going, but unfortunately I have been unable to continue just yet. I do hope to have the Canada map out for Canada day, however! Posters are what sell the most for this shop.
Occasional consulting things: I’ve helped some organizations with copywriting, or taken on one-off projects or seminars when my health allows. I used to do public speaking, and miss it. But these days I’m lucky if I get through a day doing anything productive, so it’s not going to come back any time soon. I dream of a day when I’m well enough to do talks again. We shall see.
How what do you do day-to-day? / When you say your pain is bad, what does that mean?
Occasionally, I feel like I’m doing pretty well and maybe even improving, and then I go to someone else’s house and realize—ah, no. It’s just because I have set up my apartment for my disabilities and it’s made life easier. It’s not because objectively things have gotten better.
The pain is hard to explain, but I think it’s most akin to something taking up the vast majority of your bandwidth and leaving you with little left. I know my “brain sag” and nerve pain is worse in the afternoon, so I strategize to work / write in the morning (like now). But by the middle of the day, even smaller things like having conversations, making decisions, reading, all become very difficult not just due to brain fog but because of the sheer… I don’t know, weight of how much it hurts? It’s so depleting that there’s very little gas in the car, essentially.
A win for me is being able to go to get takeout at a local sushi spot I love by myself, or managing to write and see or speak to a friend in one day. It’s so granular, those wins, but wins they are. I try to celebrate them. If I focused only on the meta view, it would feel more like an uphill slog. Doing otherwise requires that reframe I spoke to earlier.
My schedule is basically: wake up, have coffee, do some work for a few hours standing up at my laptop, and/or any calls I have to make. Have a snack. Lie down for a few hours. Stand up and do a bit more writing, if possible. Lie down and answer emails via thumbs, post on Instagram, or calls. Dinner. Post-dinner I am pretty useless, creatively, so it’s mostly just reading things online while flat. Bed.
On days I have an errand to run, or have to do something (like taxes, for example) that requires a lot of brain power, the rest of my day is shot. It took some getting used to, compared to my previous productivity levels. And one of the hardest lessons not only for me, but for anyone who is unwell indefinitely, is not to compare output to someone else who isn’t sick.
My productive isn’t their productive, but it takes reminding myself sometimes because I feel like I haven’t ‘done enough’ at times. Enough is relative, and my community hasn’t demanded more of me. It’s really pressure I put on myself, as many of us do.
As the saying goes, don’t compare your insides to someone else’s outsides.
Those are the list of questions I get most often, but if you have one I didn’t answer feel free to ask it in the comments. Kay’s whole meme page is worth a follow if the ones I included made you laugh.
A Few Links to Read
Can’t cap off a CAE without some links! Here are a few lighter ones, and one denser read at the end.
“We're now at a point in history when generations of people have scarcely known a world without The Simpsons.” A fun read on the enduring power of The Simpsons, from GQ Magazine.
A fascinating read from Canada’s Narwhal Magazine, about plovers and a community’s efforts to save them. Bonus puns from the piece’s headers, like “If you wanna be my plover, you gotta get with my friends”, and “Plovers in a dangerous time”. A court decision may “define the legal relationship between habitat loss and species”, setting a global precedent.
Also in interesting court cases, another lawsuit asks: should nature have legal rights? This one is in Florida, as covered by the talented Elizabeth Kolbert in The New Yorker: A Lake in Florida Suing to Protect Itself.
News sources that Republicans and Democrats trust the most. (The big bipartisan winner here? The Weather Channel!)
For a long time, there was a basement study space at UC Berkeley, dubbed “The Cave.” And its unique, subversive, student-run ecosystem gave rise to a generation of blind leaders and innovators. Piece by Isabella Cueto for STAT news.
“Pink Floyd, a flamingo on the lam from a Kansas zoo since 2005, is seen again in Texas”
Deconstructing the world’s oldest pair of pants — 3000 years old!
General Antonio López de Santa Anna, in exile from Mexican, came to Staten Island with the hope of creating a rubber substitute. Things didn’t go as planned, and instead he accidentally invented chewing gum.
The 19th-Century Hipster Who Pioneered Modern Sportswriting: more than a century before GoPro, Thomas Stevens’ around-the-world bike ride vaulted first-person sports reporting into the mainstream.
And on the ‘less light’ side: medical gaslighting. “When Raimey Gallant, a 42-year-old writer who lives in Winnipeg, began dropping weight, losing her hair and breaking out in a full-body rash in her 20s, she said her male doctor told her she was “young, healthy and just lazy,” when in fact, later that year she was diagnosed with Graves’ Disease, an autoimmune disorder in which the body produces too much thyroid hormone.” This is what happened to me when I first got sick, and has happened to so many people I know. Important read about the harms of dismissing pain. “I’ll never get back the pieces of life I’ve lost to medical neglect,” said Gallant. (If you aren’t a subscriber, an archived version is here).
That’s all for now!
All the best for May, and have a good week ahead.
Thank You for your insights and Great responses to those questions we'd rather not respond to. Hoping your May is Spectacular
Hi, Jodi I have been following your journey since we met in 2008 and am wondering about something. I have started looking into Dr Sarno's mind body work /TMS and the curable app for my chronic migraines and other pains, it's helping me to an extent at least (early days). And while I realise your situation is very different, I wonder have you read or tried a mind body approach and if so what's your experience with it? Love from Australia