Adventures in a Possible Narcolepsy Diagnosis: Part 3, Sleep Test

Scheduling the test was an insurance nightmare.  As it turns out my ACA insurance (the second most expensive plan offered in the South Carolina Marketplace) doesn’t cover a single sleep specialist in the state.  I’d have to drive to Charlotte, NC, or Augusta, GA, to find a sleep specialist in my plan.  I even called the insurance asking for help and they wanted to send me to pulmonologists that have no special training in sleep disorders — in as much as pulmonologists deal with breathing issues, I thought that this was not the appropriate choice, so I decided to reach out to a lot of people to see what the deal was.  I never heard back.

The sleep test itself, however, was covered, just not a doctor to diagnose me based on the results, as long as I went to the Catholic hospital’s lab and not the sleep specialist lab.  Of course, covered it is still a lot of money, but nearly $4,600 less.  With this and the other expenses of all the appointments I’ve gone to trying to figure out what’s going on and know I will go to, I’m going to be out about $1,800 in medical costs, and that’s before I even try to treat the thing (assuming there is a thing)… hopefully the sleep lab takes installments :/

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IMG_3980Most people who go in to get a sleep test are there to see if they have sleep apnea (hence why the recommendation of a pulmonologist) but I was scheduled for a night before when they’d have someone come in during the day to do a nap test.  To get diagnosed with narcolepsy you do an overnight sleep test to see what it looks like when you sleep at night called the PSG.  The PSG is not enough to diagnose narcolepsy, it’s mostly to eliminate other diagnoses and make sure you sleep enough hours before you do your nap test.  You have to sleep at least 6 hours to be allowed to take the nap test.

I was really worried about the whole thing.  I’d read horror stories of people having allergic reactions to the glue, being woken up repeatedly by their lab technician, not being able to sleep at all because of anxiety, and many other stories.  In my mind, I imagined a room like a surgical room or MRI room — bright white with lights shining down on a twin hospital bed being poked and prodded and attached to hundreds of wires.  I was afraid I’d be locked in without food or ability to leave.

I was way off about what the room was like.  It was essentially the same as any hotel room.  Television, snacks, water, attached private bathroom, big comfy chair, big comfy bed.  And a creepy camera to watch me all night.  The night stand was covered with what I assume are CPAP machines of some kind.

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My sleep tech was awesome.  She answered all my questions and we laughed about Rachel Maddow.  It was great.  It took a really long time to get all the wires and things on me, so it was great to have someone fun to talk to beforehand.  I arrived at 8 and I was put into bed just before 10.  There was another woman there being tested for narcolepsy.  Interestingly, she was also a ginger, which I find interesting because the only person I know with narcolepsy is my partner’s mother, who is also a ginger.  Once I had all the wires on me I was extremely worried about falling asleep, especially because I never go to bed at 10pm, that’s so early for me.

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I did have a little trouble falling asleep — it took probably ten minutes instead of my normal 5.

I woke up a lot all night.  Even though I sleep with earplugs, every noise jolted me straight up in panic.  I didn’t, however, have any sleep behavior, I think because I had to stop taking any stimulants.  The tech woke me up messing with the climate control because I was too warm and that apparently messes up the test.

Then at 6AM, which is about 3 hours earlier than I go to bed, her voice woke me up over the intercom.  And she came in and unhooked me and, while she couldn’t tell me anything about my results, did say that I had slept all night and fallen right back asleep when woken, and I had been “in REM a lot.”  That points to Narcolepsy, but it’s hardly conclusive.  I got unhooked from many of the wires so I was much more comfortable.

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My night tech was replaced at 7am with a day tech who was perfectly nice but not as awesome as the night tech.  She was in charge of the MSLT, “Multiple Sleep Latency Test,” which everyone just called the nap test the whole time.  For the MSLT, you take 4-5 naps and they see how long it takes for you to fall asleep AND whether you go into REM when you nap (this is called Sleep-Onset Rapid Eye Movement or SOREM).  At 7:40am, I got put down for my first nap.  I did that thing where I was pretty sure I had napped because time was wrong and I had some vivid images happening in my head and I was super groggy when the tech came in to wake me up and I was definitely *woken* up.  She asked if I had slept, I said I thought I had, and she asked if I had dreamed, I said I thought I had.  Both of those things are also associated with narcolepsy :/

We repeated this little dance at 9:40, 11:40, and 1:40.  I got increasingly emotionally unstable at being forced to get up out of my naps, I almost cried I was so frustrated at her after the 1:40 one, which felt both ridiculous and completely justified.  I got the sense that she’d dealt with some actual tantrums, because she was so apologetic.

At the last sleep test, I was struggling to stay awake even before it started, but the computer started acting up.  I ended up being in a dark room in a comfortable bed fighting to stay awake for 20 minutes while she tried to fix the computer.  Ultimately, she came in and explained that even though this lab always does 5 tests, only 4 are needed for diagnosis if the results are clear, so I didn’t need to do the last test — so either I definitely do or definitely don’t have Narcolepsy.  As she started to unhook me, I tried to get more information from her, and asked, “Could you see me dreaming?” because I knew I had slept and I had felt my eyes going wild, but I wasn’t sure I had dreamed.  She said, “I can’t tell you that, but I can tell you that’s why we don’t need a fifth test.”  That sounds a lot like, “Yeah, you’ve got Narcolepsy,” but it could be, “No, you didn’t dream at all, lady.”

So, it looks like I have every symptom of Narcolepsy, every comorbid disorder or behavior, AND like the tests have confirmed it EXCEPT I don’t know for sure about the cataplexy or the test results.

Do I sound like someone in denial?  Or like someone trying to talk myself into the diagnosis? I’m not sure. Maybe I should run a poll.

After not hearing anything for 2 weeks, I called the sleep doctor office because no one at the lab answers the phone and I didn’t know who else to call.  The receptionist told me she had my results literally sitting in front of her and I needed to schedule an appointment with someone to get them.  This means that I have to go see someone out-of-pocket.  Great.  I feel like I’m being extorted for money just so I can read a test result which I’ve already paid for.  *sigh*  But I agree because what the hell else am I supposed to do and they’ve been very nice and everything.  June 3rd.  11am.

A week later, a nurse from my primary care physician’s office called me.  My PCP had seen my test results and I really needed to get in to see a sleep doctor, they could treat my sleepiness, and had anyone called me?  I confirmed that I had an appointment and asked if the nurse could tell me what was on the results.  She said she couldn’t, because my doctor hadn’t written down a diagnosis so she just didn’t know what the test meant.  SIGH  Again, it sounds a lot like there’s a diagnosis of Narcolepsy sitting on that sheet of paper, since my PCP is making me go to a specialist for treatment, but maybe she just thinks that whatever is going on is outside her area of expertise and it could be anything.  So tantalizingly close to knowing, so far away.

Wednesday Wednesday Wednesday.

Previously: Part 1, How I got Here
Part 2, WTF is Narcolepsy?
Next: Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

Menu Updates; Life Updates

If you look up at the top menu, after the FtB stuff, you’ll find some handy links to help you find things you might be interested in.  Ever wanted to see a list of my speaking engagements, television and film edits, or publications?  You’re in luck.  Ever wanted to watch all my ukulele videos or see if you missed any? BAM done.  Wanted to easily navigate to my favorite posts? It’s up there.  Wondered about my résumé? Well there you go.

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Speaking & Publishing

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I’m at the SSA Board Meeting, virtually, so that’s also going on.  Also… I got engaged.  Below I am proposed to on my birthday just before midnight; I propose on his birthday, just after midnight; our engagement rings.

I am proposed to just before midnight, 5/23 Ashley proposing Rings

I also just moved into my first house I’ve ever owned — where the engagement pictures were taken — and my best friend in the world who I haven’t seen in 2 years visited me and was there too.  And that whole narcolepsy yes no maybe thing going on. All the things!

Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

I am not a hypochondriac.  Really, it’s just that there’s frequently something wrong with me, so it seems like I’m a hypochondriac.  I like to think of myself as “on top of things.”  In this case, I very much have not been on top of things.

I confess that before Narcolepsy was brought up I had only the vaguest of ideas about what it was.  Like most people I thought it was a thing that made you fall asleep randomly in the middle of what you were doing, like in the terrible movie “Deuce Bigalow.”  As it turns out, while randomly falling asleep would indicate that you likely had Narcolepsy, that isn’t really typical for people with Narcolepsy (PWNs).

Excessive Daytime Sleepiness is the most common symptom and that’s just what it sounds like.  They say that if you wanted to experience what the day-to-day reality of a PWN is, you’d have to stay awake 48-72 hours.

I’m tired almost all the time.  I usually have about 2 hours a day where I feel properly awake.  My ESS is 16.  16 is the average score for Narcolepsy.  It’s remarkable that my score is so high considering my sleep hygiene. Dark room, earplugs, same bedtime every night, 8.5-9 hours of sleep, no caffeine, no alcohol, no nicotine, no tv in the bedroom, no books in bed. This sleep hygiene routine has maybe knocked a point or two off the ESS since my college days, when I was more prone to falling asleep driving or talking to people because of my sleep schedule.  There are other things that can cause sleepiness, Sleep Apnea and Restless Leg Syndrome being the most common, but I don’t snore, I have a well-defined palate, I don’t kick, and I’ve never had anything like restless leg feelings.

Narcolepsy SymptomsCataplexy is the second most common symptom.  Cataplexy is where you lose control over your muscles when you experience strong emotion.  Most commonly and most severely this would mean you would totally collapse when you laughed, but it can be triggered by anger or arousal or excitement and you can just lose control over one muscle group, often your head or jaw or knees.

… This symptom is the one that worries me because, as far as we know, cataplexy is a slam dunk for a diagnosis, if you have cataplexy you have narcolepsy.  I fall down a lot, several times a week, but not usually preceded by strong emotions.  I’ve always assumed it was because of low blood pressure or vasovagal response, both of which I have, but I also have falls that aren’t like the others and I lose control over my jaw sometimes when I feel very angry, anxious, or laugh.  I slur my speech, it’s a bit of a fight to talk, particularly when anxious or angry.  I can’t stand up if I cry.  And then there’s this other thing.

There’s this thing that happens when I go on roller coasters that everyone I’ve ever gone on roller coasters with gets really bothered when I try to explain it to them.  I always sort of simplify and say they make me feel like I’m going to sleep.  I don’t know if cataplexy is supposed to make you feel bad, but on roller coasters I get really excited and then it’s like my body falls asleep, like I can’t even see or hold the rail or my head up, and I’d feel like I was asleep but awake.  As a person with anxiety, it’s weirdly releasing, and it never lasted til the end of the ride, so I have no problem getting off the rollercoaster.  That same thing happens frequently if I am experiencing a great deal of pleasure in the bedroom. I won’t be able to support my weight and if I try I will do that same thing, my whole body will go limp and I won’t be able to see for a few seconds.  Recovery is instant, quick, and complete. My understanding is that what I’m describing there sounds exactly like cataplexy.

Hypnogogic Hallucinations and Sleep Paralysis are the last two symptoms.  The first describes going into REM immediately when you fall asleep so you have dreams while you think you are awake.  The second describes waking up and being unable to move your body because your body thinks you are still asleep.

For me, these symptoms happen concurrently.  Yesterday, I fell asleep in the middle of the afternoon, something I try to avoid, and spent an hour trying to wake up out of sleep paralysis and hallucinations.  I kept thinking someone was in the house but I couldn’t move, I would wake up and be unable to move and then be half-asleep again — I’d manage to move a little and then fall asleep again and again.  I finally moved enough to be able to slap myself hard in the face several times.

There are other things that aren’t symptoms but are associated with Narcolepsy:

  • Obesity related to constant hunger from sleep deprivation: Check (Though I usually manage to squeeze into the overweight class)
  • Hypocretin

    Hypocretin-producing neurons (img from Harvard)

    Other auto-immune conditions: Check (Severe Allergies, Thyroid; Narcolepsy is believed to be an auto-immune condition caused by your immune system killing all the cells in your brain that produce hypocretin)

  • Severe virus before onset or worsening of symptoms: Check (I’ve had these symptoms for a long time, but they’ve got worse since my Pneumonia, Flu, Mono trio last year)
  • Automatic behavior: Check (I do this a lot when driving long distance)
  • Brain fog/memory problems: Check
  • Difficulty paying attention: Check
  • Depression: Check
  • Low Vitamin D: goddamnit Check

On top of that, there are genetic markers that signal your likelihood of having Narcolepsy, and thanks to 23andme, I know that I have a much increased risk because of my genes.  In fact, of everything I have increased odds for getting, my chance of getting Narcolepsy is the most increased above average.  Followed closely by Parkinson’s, which is, OH GOOD, associated with Narcolepsy too.

stats2So all this points to a not impossible chance that I have Narcolepsy.  Really, the amount I’m trying to talk myself out of the possibility of Narcolepsy is probably quite laughable and hardly very skeptic of me.  The things is, as much as I’d like to fix my symptoms, if they’re something else that will just go away, it’d be better.  People with Narcolepsy have a quality of life approximately the same as those with Parkinson’s or Epilepsy.  It’s not exactly a pretty picture.  There’s no cure and no guarantee that any of the treatments will work for you.

And the treatments are kind of intense — basically they give you uppers and downers and hope it makes you alert and have better sleep than you would otherwise.  One of the most effective drugs?  Sodium Salts AKA GHB, the date rape drug.  Also almost all treatments both interfere with birth control AND you can’t take while pregnant.  Though maybe at some point there’s so much wrong with me that I really shouldn’t inflict that on a new human being anyway.

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Anyway, waiting for the diagnosis I am flipping back and forth between wanting them to say I have it so I can get a treatment and really, really not wanting to have Narcolepsy.  I guess having something that’s treatable is better than just being tired all the time with no recourse, but I’m not happy about it.

Read: Part 1, How I got Here
Next: Part 3, The Sleep Test
Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

Friday Art Post

Cruella Deville - "Perfectly Wretched"  Mitzi - "tack-a-rama"Mama June - "beautimous"  Agent Scully - "I would have to say... No."RuPaul as Rachel Tensions - "I could just SPIT"  Joan Cusack as Debbie in Addams Family Values - "What about my needs?"

Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here

I had just gotten into bed and was trying to fall asleep when suddenly there was a man standing next to my bed, having crept into the room without me hearing him.  Terrified, I grabbed my pillow and started hitting him and kicking him as I tried to scramble backwards off the bed in the other direction.

I was grabbed from behind by my partner and I woke up swinging my pillow and kicking wildly, crazed with fear.  It was very confusing to wake up because I had been so sure I was awake in my room, in that very spot, but it was a hallucination or a dream.  My partner was freaked out, he hadn’t even fallen asleep yet, we’d just gotten in bed a few minutes earlier, and I tried to explain what was happening but, as dreams do, it was already fading.  My racing heart and hysterics took a little longer to fade, but I fell back asleep not too much later and forgot it had happened until my partner mentioned it the following evening.

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An open letter to Michael Nugent

This was too long to fit on Twitter and I didn’t want to take to your comments section.

I recognize that you don’t owe me a response, and I feel like you are almost certainly working on one, but I would like to discuss the fact that you saw fit to respond to Richard Carrier before you responded to the “more considered posts” by me, M. A. Melby, or Secular Woman. It’s worth pointing out that you haven’t entirely ignored M. A. Melby’s post because of “having” to respond to Richard Carrier, just the “quite reasonable,” as you put it, part of it.   I would like to highlight the not unreasonable conclusion that one could draw, that indeed we were already discussing: You prioritize getting into petty internet fights about tone over everything else. In this case, you prioritize getting into petty internet fights about tone over serious-minded discussion about an accused rapist in the movement.

You’ve sat with our discussion for over a week now. There are nearly 1000 comments between the two blog posts on my site about this topic. Two other women have chosen to write about this. And done so in a tone that is much more to your preference than the tone of Mr. Carrier. And yet you choose to write a blog not in response to the women who are trying to have a discussion with you about something that they are deeply concerned about, who are writing in what you consider an appropriate tone. You choose instead to respond to a blog post written by a man relying heavily on the posts written by those women — indeed over half his post is dedicated to linking to the other sources on which he’s based his post. You choose to prove the point that if one writes in an aggressive tone, one will get attention and responses, while if one writes in a reasonable tone, one will be put on hold. I now wonder if I might have gotten a faster blog response if I’d written in a less reasonable tone myself.

And I get it, that’s an easy 3000 words to write, just like it’s easier to write 3000 angry words calling someone a fuckhead than it is to write something nuanced. But I think in choosing to respond to the angry tone instead of the nuanced tone you’re guilty of promoting the same thing you’re saying you’re against.

Mr. Nugent, you also state at the beginning of the article that you “have to” respond because of how Mr. Carrier has portrayed you and Atheist Ireland. You really didn’t. You chose to. There are always going to be people misrepresenting you on the internet. There are always going to be people whose tone you’re going to want to correct. There’s always some new fight to be had if you’re itching to write 3000 words about how someone is wrong on the internet. And, to be clear, you chose to respond to that one. And that’s fine, but I want you to understand the message that all of this sends, because it’s the same message you were already sending: Michael Nugent cares more about tone than he does about women.

I don’t think that’s the message you want to be sending, based on the mission of Atheist Ireland, I know it’s not.

 

ETA from comment below: The point of this, like the previous posts, is not that Michael Nugent is a bad guy. It’s that he keeps doing things online that make him look like a bad guy and he’s either unaware of them, in which case hopefully writing them out calmly in a blog post and explaining why they look how they look will help him understand why people see them the way they do, or he doesn’t care about the people who are interpreting his actions that way and he’d just as soon write them off as engage with them, in which case I think his tone arguments are hypocritical. Either way, I don’t see a course of action for myself that is more rational than to call his attention to the interpretations and see what he makes of them.

Prettying up the place

As you may have noticed, I’ve got a fancy new banner.  Several of them, in fact, thanks to the work of Alex Gabriel.

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He also made me some business card style square designs.

07 - v3EjX3v10 - qsWlQTZ
09 - vLiIs54 08 - a0dOfxI
I know y’all are just impressed as all get out.  I am pleased, it’s much better than my previous logo.  I am especially pleased because it’s all based on my art — it’s a really lovely marriage of my maths brain and my arts brain.  I think he will give a better break down of the design process but these are the paintings I sent him from which he designed these.


lueuaHo r5vPi4w
 LjvHMJH
zC4Ts0q hUgyE1J
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There’s also a shiny new headshot with my old bio that I may get around to updating.  I’ve also got a fancy new donate button, because it was requested of me by a reader, Deepak Shetty, who was kind enough to actually give before I figured out how to set it up.  I’ve also got an Amazon carousel thing because I signed up for this Amazon thing and they yelled at me that they were shutting me down if no one bought anything from my linking to them, which is fair, as I’ve never linked through them.

In all cases, don’t feel obligated to donate or buy anything, I just put the donate button up because I was asked to, and I am deeply flattered, and the Amazon thing is really an experiment.  You can’t see it if you’ve got AdBlock anyway.  It’s mostly there to show you what ukulele I bought, what gender text book I’m in, and that I eat too many Rowntree’s.  Did my taxes today… my average monthly payment from FtB in 2014 was, you know, $14.13, so, you know.

Anyway, as you may or may not know, I was diagnosed with severe Vitamin D deficiency last week.  I’ve been sick since last July, and it didn’t occur to anyone to test for that because, as the Slymepit noted, I’m extremely pale and it takes very little sunlight for someone of my skin tone to make adequate Vitamin D. On top of that, I live in South Carolina, not the Arctic Circle, so someone like me developing a Vitamin D deficiency is approximately like someone on an orange farm developing scurvy, it just didn’t occur to anyone.  My deficiency is likely due to the fact that I work from home, am also writing a dissertation (theoretically), am allergic to most of the things that grow outside, and avoid sunlight because I burn so easily.  Then it became a bit of a runaway problem because Vitamin D deficiency makes you more susceptible to catching viruses, which meant that despite my pneumococcal and flu vaccines and being well out of age range, I got pneumonia in the summer, then the flu, and then, for Christmas, mono, all of which lasted a very long time and kept me indoors even more than normal.

I have only lately been gaining my energy back from the mono and am now being treated for the deficiency so I have some hope that the massive cloud of fatigue and never ending stream of illnesses I’ve been battling since last summer might finally lift in the next month or two, which is apparently how long it takes for supplements to kick in.

More on Shermer, PZ, and Michael Nugent

Ashley to Michael: I'm asking whether it's unreasonable for someone to feel uncomfortable when you say it's wrong to call Shermer a rapist.  Michael to Ashley: That's a question I haven't heard before. I don't know. I'll think about it and get back to you. Capped from Damion Reinhardt's Storify

I wanted to respond at length to both Michael Nugent, who I’ve spoken with over Twitter, and to many commenters who agree with him in the previous post and on Twitter.

I don’t have a problem with Michael Nugent’s distaste for PZ’s tone.  I don’t agree in general, though like Nugent, I found PZ to be lacking in his posts about Dawkin’s childhood sex abuse and Robin Williams’ suicide.  PZ has always been a pit bull, and it generally gives his posts clarity and humor, both of which I appreciate.  But, I don’t really care if you hate that, that’s fine, to each his own.

I also don’t really have a problem with Atheist Ireland’s dissociation with PZ.  Again, freedom of association, to each their own.  I do think that, while they’ve made an exhaustive list of why they don’t like his tone, they’ve failed entirely to even try to make a case as to why an American blogger’s tone has any relevance to the work they are doing.  I’m not sure what harm PZ has actually caused to Atheist Ireland, beyond making Michael Nugent very unhappy. Why Atheist Ireland’s agenda includes breaking up with bloggers is beyond me.

The problem I have with Michael Nugent fundamentally boils down to his 9/17/14 blog post in which he equivalizes his complaints about PZ’s tone in his posts to PZ agreeing to post a firsthand account of rape in which the victim names her rapist.  This post by Nugent is in response to a lengthy, in-depth article by well-respected journalist Mark Oppenheimer, known for his work at the New York Times, in which Oppenheimer details multiple accusations of misbehavior on the part of Michael Shermer.

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The Background of Atheist Ireland’s Breakup with PZ: It’s about Michael Shermer

Edits from earlier versions: Two major edits from information sent to me via Twitter by people who were, I think, trying to be hostile, but who I appreciate sending me the information. Ron Lindsay did not ask Rebecca Watson to take down her post, he asked her to reword it and the link to his post has been reworded to reflect that; this was a misremembrance on my part. The second is that I added screencaps and reworded the description of the Slymepit to be more accurate. The inaccuracy previously was the suggestion that they stalked people’s hospitals, which seems to be a game of telephone garbled interpretation I heard of an event that is linked to, in which they took PZ’s hospitalization as an opportunity to make up STD rumors about him. While I did have 2 editors fact check the post, they missed these, as did I.

Mixed Rape Finals - Members of FtB judging a rape; unauthorized photoshop of Brian Engler's original photo

I’m not entirely sure if the joke is that we’re judging our own rapes or a rape we’ve witnessed.

So in recent days, there’s been a bit of drama in the atheist movement over Atheist Ireland and PZ Myers that I’ve spent a bit of time trying to fully understand the background of.  Since I spent all the time getting a big picture overview, I thought other people might like to have access to it as well.  I don’t regularly follow any of the main players’ blogs, and I’ve been ill for the last 8 months, so I haven’t regularly followed anything during that time.  That said, the tl;dr version of the story is that it’s about Michael Shermer, and the longer version follows.  It’s not convoluted, it’s just happened over a long period of time.

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Terry Pratchett aten’t dead

Death is good at his jobI’ve nothing profound to say about the death of my favorite author and one of my favorite human beings now that I’ve stopped crying enough to type, but I’ll try. Terry Pratchett had an immense influence on my own writing style, including some bad habits, and on my humanistic philosophy, including some opinions on exclamation points. His death feels like losing a friend, a mentor, and a family member.

Selfishly, I mourn the future stories of dozens of characters that I loved and now feel a little bit lost to me too: Esme Weatherwax, Sam Vimes, Tiffany Aching, the Patrician, and Archchancellor Ridcully are just a few that I feel I’ve lost.

I’ve had two Pratchett quotes up on Facebook for the decade I’ve been on it, so I’m glad that I celebrated him while he was alive and might somehow have been able to appreciate it. But perhaps I’ll share one more now. *Leans in conspiratorially.*

“Do you not know that a man is not dead while his name is still spoken?”