Of account settings, templates, and what comes next

Deep in the dark recesses of Google account settings is one we’d prefer to ignore. It’s one that gives those of us who live our lives online a way to bequeath our digital file cabinet to another. It’s the setting that I recalled -- in a blind panic -- at 4am on this past Halloween.
My reaction @ 4am


The cause for this panic? Well, it started over a year and a half ago in 2013, when I was slotted to attend OSCON. I flew into PDX, excited to attend workshops the next day. I had signed up for a data science with R workshop -- long before I started my flirtation with Julia. While I was unpacking, my back gave out, and I never made it to the workshop.

That event kicked off one of the best and worst years of my life (cue the Tale of Two Cities jokes).  My health kept deteriorating, in strange ways. It affected my ability to keep plans with friends, enjoy my life, keep up with day-to-day chores, and eventually my ability to do my job. I remember standing at my desk, staring at my screen, completely blanking on how to send an email that I had just written. Forget coding; I no longer had the concentration necessary.

I took a leave of absence, acknowledging that I couldn't simultaneously be a patient and developer advocate.

What seemed like thousands of consults and MRIs later, my kickass neurosurgeon diagnosed me with a Chiari malformation and a syrinx in my spinal chord. I'm told that it’s relatively uncommon. Our first step was to try a decompression surgery, which essentially was designed to make more room in my skull for my brain.

The days before

Every time I’d been to the ER in the last year, they had asked me “do you have a living will or advanced directive?” “Surely you can’t be serious! No, I’m 29.” became my stock answer because I was 29, and I was a fan of Airplane!. I didn’t have kids, and my property assets were relatively minimal. Those forms came back with a vengeance.

The hospital had helpfully included some templates for those forms in my pre-surgery packet. All of a sudden, I had to decide who would have the authority to make medical decisions on my behalf, if I were unable to myself. (This message is to all of my fellow unmarried adults: if you think that your parents are the default answer here, you’re wrong, and it can be a very costly and emotional mistake.) Under what conditions should I be kept alive?

Oh, I threw a tantrum of which three-year-old me would have been proud.

How dare life force me into the situation where I’d have to think about this? I couldn’t believe the amount of anger that arose from the forms alone. I’d been happily living a mostly-carefree life, moving in with my partner, traveling, progressing in my career, pursuing new interests. Now all of a sudden, I was talking about who would get what if I died in two days. Oh, and did anyone know about my aversion to anything but cremation?

Those forms forced me to face the very real risks that a craniectomy posed. Life no longer was playing by my “well, everything generally works out” rule. There were some uncomfortable conversations with my partner and my mom, but those forms had nothing to do with me, and everything to do with them.

The night before

So, there I was in a panic. Like many of my peers who work in technology, most of my life is stored online. I wouldn’t want the pictures chronicling the last decade of my life to sit upon the digital shelf, gathering dust, in the metaphorical vault. I’d want my family to be able to access the tweaked family recipes. My fiancĂ© should be able to decide what to do with the domains and code that I’ve committed over the years.

I didn’t have time to get everything in order. However, being able to at least designate a beneficiary of my Google account allowed me to have a little bit of peace.

The days ahead

That particular operation was a partial success; I no longer had the headaches that incapacitated me for days at a time and sent me to the ER. That alone was worth it. Still, I suffer from pain that is, at times, blinding. It prevents me from driving, or walking anywhere more than half a mile away, or from leaving the house by myself. I’m afraid of any action that might incur my body’s wrath, like sneezing or turning to the left.

I’ve got a fork in the road ahead of me. Down one path, I can take a step back from work, from life, and try to manage the symptoms. Down the other, I can go for the fix.

I wrote this mainly to figure out if I want to go for a fix -- one that my surgeon has described as “not a free lunch”. It has a significant failure rate (where the definition of failure includes non-trivial things like paralysis and death), and it has been hard to ascertain whether the sample size is large enough for that to even mean anything. I’m leaning towards taking the risk, because I miss living.

I miss leaving the house, getting dressed, coding, cooking, exercising, dreaming, sleeping, playing the piano, and generally being a person. I want to finish unpacking, reconnect with friends, try on wedding dresses, and get back to work.

Even now, I've had to cancel on a number of talks, missed the CFPs for a dozen of conferences that I'd like to attend, and been too incapacitated to fully appreciate any of it. I'm privileged to have the most amazing partner and be a part of a fantastic team who have been nothing but supportive. This would be absolute hell without you, so thanks!

Hopefully, I'll make a decision soon, and come to peace with it -- but in the meantime, I'll be taking it day by day.


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