Kate Violette

Time to read: 14 minutes.

This week’s newsletter is a little bit different! I hope you like reading it all the same.

Today is my 40th birthday. I’ve always liked that my birthday is exactly halfway through the calendar year. My kid self was pleased this timing allowed for a well-averaged distribution of presents throughout the year, since June 30 is nearly diametrically opposed to Christmas. (Why yes, I was, and am, a math nerd.)

I also like that my June 30 birthday affords me extra motivation to consider how my yearly goals are going at the halfway point of the calendar year. It’s useful to have check-in points to consider how bigger picture ideas are coming along—a thing I think we neglect the importance of too often in both our professional and personal lives. Better to know halfway through that something isn’t going the way you want it to, than to be caught surprised-Pikachu-faced too near to the end.

I’m experiencing a number of halfway points today, I suspect. The obvious one is it’s halfway through 2024. I’m also, statistically speaking, somewhere near the halfway point of my life. That’s a weirder one to reflect on and process. (Especially so because none of us ever really know when we’re halfway through our lives, of course.) And equally as uncertain but still plausible, it feels like I’m at a halfway point in my illness journey—that is, if my doctors and I are finally on the right track and the main root of my overall illness picture is indeed Lyme (and Bartonella) infection.

I’ve written a short reflection on each of these halftimes today, along with a short ask for help at the end. If you’d like to help me celebrate my 40th birthday by helping stock my war chest as I stare down and prepare for the boss level of my illness journey, or if you can even offer logistical help in person, that would be a very appreciated birthday gift. I’m too sick to do much socializing at the moment, so today’s just been a video call with my aunt and some texting with close friends. And writing these reflections!

Halfway through 2024

I’m realizing I neglected to write a post at the beginning of the year outlining what my 2024 goals are. Whoops, I’ll fix that next time. I decided this year I was only going to set goals that I could accomplish at my current level of illness in January. (I’ve had some ups and downs but I’m about the same on average.)

Here are each of my 2024 goals—seven in total—as well as my progress on each of them!

1. Watch every Katharine Hepburn movie: 25 watched of 52!

I’m named after her, but up until December last year, I’d never gotten around to watching any of her movies. Hepburn was in 52 movies total, which works out nicely to watching one per week. Though I’ve missed a week here and there, I’ve been able to catch up in following weeks, to stay on track overall.

2. Read one book every week: not quite happening, got recycled into something else cool.

I planned that bedtime would be my main reading time, but I’ve been so exhausted by the time evening rolls around, that hasn’t been reliable. Also, I’ve gravitated more towards reading in French this year than reading in English, and I’m a much slower reader in French. But that feels more meaningful to me right now than simply hitting an arbitrary number of English books for the year, so I’m still happy with how this is going.

3. Finish reading my first book in French: done!

I finished reading the first Lupin book back in April. I then moved on to a second Lupin novel, but that book’s currently paused to make room for “La Princesse des Clèves”, which is the reading for an upcoming book club at the Alliance Française Boston. So I’m extra-credit crushing this goal.

4. Publish a weekly personal round-up: about 58% success rate so far.

Frankly I’m surprised I’m even doing that well; let’s see if I can beat that record in the second half of this year.

5. Take and pass the B1 DELF: I did it!

The test is only offered three times each year in March, June, and December. I figured I would just keep signing up and canceling if I my illness required me to on the test day. But I was just well enough to make the March date happen, and while it did take me 2-3 days to fully recover back to baseline, it didn’t cause a severe crash. And I passed! I was so happy when I got the email that that caused a bit of a crash the next day. Next year’s goal: the B2 DELF!

6. Get my tiny home (Timbit) featured in a design magazine: no progress.

No progress other than continuing to settle in and make the space my own! This one is my wacky “out there” goal. If anyone knows anybody at a design magazine that would like to write a piece on the interesting interior design challenges presented by tiny home life, I’d love an introduction.

7. Knit through half of my yarn stash: no progress.

Since my neck is a bit more unstable again thanks to recent antifungal treatment (a preparation step for Lyme antibiotics), it’s more easily pulled out of place by repetitive motions like knitting. So, sadly, I’ve had to put knitting somewhat on hold.

All in all, I’m happy with my 2024 goals progress so far! Two are done, one is right on track, two are somewhat on track, and two are not begun.

Halfway though life, statistically speaking

Several months ago I took my 23&Me data and plugged it into some third-party resources that other folks with ME/CFS have found useful. There weren’t a ton of surprises, but it was funny to have websites cheerfully chirp at my ill self that I have an 8-fold above average chance of living to 100, and that I have the very best forms of some of the most well-studied aging genes. “Sure,” I thought to myself, “if the MCAS doesn’t get me first.” But on the other hand, maybe those genes are why I’m still alive and kicking despite a severe illness.

My grandparents all lived decent- through impressively-long lives: the youngest passed at 73, two in their 80s, and my maternal grandmother lived until she was 96. Even if you look back to my Acadian settler ancestors, you’ll see them regularly living into their 70s, at the turn of the 18th century! (Although to be sure, the Mi’kmaq people deserve a lot of the credit for keeping my unprepared ancestors from freezing their butts off or dying of scurvy upon their arrival in Nova Scotia in the 1600s.)

This is weird math to contend with, but for sake of argument, let’s ballpark it as: statistically speaking, I might reasonably expect to live to my 80s. (Well-managed MCAS doesn’t necessarily shorten lifespan; on the other hand, I wouldn’t say mine is well-managed yet.) Even in the best case of possibly living into my 90s—I’m not at the moment feeling optimistic enough to hope for 100, chirpy websites or no—I’m at least nearing my halfway point. That feels…weird. Startling. There’s so much I want to do that I haven’t yet done! And my currently-disabling illness is not helping matters!

But then I think about how truly long 40 years is. It’s a fuck-ton of time. I had an entire childhood, went to college, processed childhood trauma and got right with myself, had about the first third of an awesome career, got married, got divorced, made a bunch of friends, got sick, lost a bunch of friends, am now making real progress on a lifelong language learning goal. I’ve lived under seven US Presidents. I’ve lived in five different US states spanning East Coast to West. I’ve been lucky enough to discover what leaving one’s heart in San Francisco is all about. Forty years is a fuck-ton of time.

And with the second forty, I’m—other than the whole oppressive illness thing—in a much better position to accomplish the things I want to with the time I have left. I have a better understanding of who I am and how I fit (or not) into the world, of the unique strengths I have to offer, of the values that form and guide my soul. In contrast to day one in the world, I also have pragmatic things like verbal and math and science skills, and a bank account, and a tiny home that I own outright. I have professional skills that I could use to earn money again someday, if I were to get well. I now have very good doctors and quite a number of plausible treatments left to try. Even though my social network has been mostly shredded since becoming sick, the friends that are still in my corner are the real fucking deal.

So, I’m trying to not let this birthday throw me too much. It’s a gift to live this long; I wasn’t sure I’d make it this far when I first got sick. I’m happy to still be here. My kid self would be proud of who I’ve grown into. So here’s to the next forty: I have a lot left that I want to do, and I hope I get to do it. On the bright side: forty years is a fuck-ton of time. And however much time I actually have left, I at least now know exactly how I want to approach living it. That’s the good stuff right there.

Halfway through my illness, if I’m lucky?

Here’s the short version for those unfamiliar. Starting around age 29, I started to have some weird health issues. (There were signs even before this point, but let’s start there.) I was a distance runner and despite regularly going for ten mile runs, I suddenly started struggling to even run two miles. I went to go see a doctor about it, and was told it was just aging. I didn’t know what else to do, so I found other ways to still be somewhat active instead.

But by the time I was 34, something was clearly wrong—sometimes I was doing ok enough, but other times I would have weeks-long stretches where I was struggling to even move about my apartment due to muscle weakness and severe fatigue. (I’m lucky to have had jobs where telecommuting is an option or even the norm.) It then took another 2+ years to finally find at least one doctor who sort of knew what was going on with me. However, that first specialist put me on a course of antibiotics for SIBO in December 2020, which resulted in a severely negative reaction: I ended up in the ER three times in as many weeks, and lost 15 lbs because I couldn’t eat anything more than chicken broth and multivitamins. That marked my transition from “somewhat sick, some of the time”, to “severely sick, all of the time”. When I refer to becoming “Big Sick”, that’s when I date the start of my Big Sick.

In the 3.5 years since then, I’ve been lucky to find better doctors, get more precise—and actionable—diagnoses, but I’ve still remained Big Sick til now. That earlier doctor, like so many West Coast doctors, waved me off from seriously considering Lyme disease. “We don’t have that here”, they’d all tell me. “I grew up in Maine, people move places”, I’d object. That particular earlier doctor at least said “I doubt it’s Lyme, but if you try everything else and three years later you’re still sick, I would try treating for Lyme”.

Well guess what? It’s over three years later and a proper Lyme specialist I’ve now seen has confirmed he is highly suspicious that both Lyme and Bartonella are probably driving much of my illness picture. (It’s not uncommon for people to develop MCAS secondary to Lyme and associated bugs like Bartonella.) Since that diagnosis, my main doctor and I have been attempting to prepare my body for the slog that will be around 18 months or so of pulsed antibiotics and other medications to hopefully beat these two long-undiagnosed infections into submission. I anticipate beginning antibiotics around August this year.

So this is where I ask for help. I have a hunch that these might be the treatments to help me regain some health. I don’t want to unreasonably get my hopes up, but looking at the data, a majority of people with Lyme who work with a Lyme-literate specialist experience at least a halfway decent remission. I’ve got good news and bad news. The good news first: we should know by month 3 or 4 of antibiotics if Lyme (& Bartonella) are indeed a, or even the, major root issue for me. The bad news: according to my doctor, about 80% of people get worse on antibiotics¹ before they start improving. Since I’m already so disabled that I require a lot of privately paid homecare, there’s a good chance I’m going to need even more before I get better. This is where you come in, if you’d like!

A couple folks asked in advance of my birthday if I wanted to do anything fun for it, but really what I want for my birthday is to feel adequately cared for—even if just for a moment. It would mean a lot to me to have help defraying my private pay homecare costs and other out-of-pocket medical expenses. My savings are about halfway drained, meaning if I continue to be as sick as I am, for as long as I have been, I am going to run out of money. This is why for my birthday, I would just like help staving off that possibility as far as possible. If you want to know that you’ve bought me a concrete thing!, like a bottle of Zyrtec, here are a few example recurring expenses that you could tie your gift to:

• $6: The monthly subscription fee for an app that can analyze ECGs from my Apple Watch in deeper detail than the default app.
• $8-9: Arnica gel for angry muscles. One tube lasts me a couple months.
• $29.99: One bottle of Zyrtec gelcaps (40 count) from Target. I go through 4.5 bottles per month. (!!)
• $40: One hour of private homecare. I need anywhere from 50-60 hours of homecare per month at the moment, and plan to proactively hire for 80 hours per month when starting Lyme antibiotics later this summer.
• $55.27: One 15-min chiropractic visit from the discounted packages I buy (since insurance only covers 20 visits per year, and my neck needs twice-weekly treatment).
• $93.50: One 30-min chiropractic visit. I have one 15-min and one 30-min visit per week.

(I have many other costs beyond this! My medical expenses alone, not including homecare, average around $6,000 per month. But these are some examples!)

If you’d like to chip in, my Venmo handle is @kate-the-purple. If you live abroad, I’m also set up on Ko-fi: https://ko-fi.com/kateviolette

Alternatively, if you are willing to help in-person: with errands and rides to appointments, or virtually: arguing with insurance on the phone or being available for virtual supervision calls when I’m starting new medications, I would also be thrilled for that help. You can DM me on Bluesky at kateviolette.com or on Discord at vkate. A friend or assistant will probably help coordinate offers of help on my behalf, but you can send them my way to start! Please note: specific offers of help are much more helpful than “let me know if I can do anything”; historically that has meant I’m required to play a guessing game of what people are actually interested in doing which is a drain on my limited energy.

Thanks very much for reading my birthday ramblings, and thank you to everyone for your support. ❤

(Inside baseball footnotes:)

1. If you’ve made the connection that antibiotics made me Big Sick in the first place, and we’re about to put me on antibiotics again—yeah, I’ve made that connection too. We’re going to be working with a different class of antibiotic, and my Lyme specialist believes that earlier reaction to the other antibiotic is further suggestive of Lyme: it probably just aggravated my infection without really doing much to combat it. But my reasonable apprehensiveness is why I am planning to proactively schedule much more homecare help than usual for my first couple months of Lyme antibiotics. ↩︎