MY YEAR ON SPACE MOUNTAIN

maureenjohnsonbooks:

Two years ago, my friend Robin Wasserman and I were down in Florida for LeakyCon, and we used our free afternoon to go over to DisneyWorld.

“Let’s go on Space Mountain,” Robin said.

“Isn’t that a roller coaster?” I asked.

“Yes,” she replied. “But it’s for kids. Little kids ride it.”

I don’t like roller coasters. I don’t trust roller coasters. I know many of you like them. Bless your dear hearts; may you always live in interesting times. My philosophy is this: I write books for a living. I live in the middle of New York City. I get enough thrills and uncertainty and screaming on a daily basis—I don’t need to seek those things out by riding a glorified conveyor belt. But I trust Disney. It’s a Quality Product and the rides are pretty okay, even for someone like me who closed her eyes for a moment when Robin made Dumbo go up too high.  

Space Mountain isn’t just a roller coaster—it is an indoor roller coaster. It is located inside of a spiky, windowless building. I write YA—I know a dystopian Murder Dome when I see one. But Disney can get away with this kind of ghoulish, terrifying structure because it is the land of happiness and you believe that whatever lurks in the spiky dome must be wonderful because Mickey.

Along with my confidence in Disney, I was bucked up by the fact that I had done a little fast-talking earlier in the day and had secured a special ticket to bypass any line. Space Mountain had the longest line in all of Disneyworld, so this was the best and most natural place to use our special pass. I was mad with power.

“Sure,” I said, smiling up at the bright Florida sunshine. “Why not?”

The pass that let you bypass any line didn’t actually let us bypass all lines. We were put in a special, shorter line that was still pretty long. It wound into the depths of Space Mountain, on and on further into the belly of the thing. People crowded in behind us. My better instincts were starting to kick in by this point, but we were committed to the idea of riding Space Mountain because the only way out was through. By the time we got to the loading deck, I had lost all sense of where we were. We’d been in this structure for a while, and there was no sense of perspective in terms of height. The carriages were single-file, so everyone was going it alone. I was stuck in the front.

Then we moved.

Visually, this is all there is to know about Space Mountain: it is dark. Very, very dark. The only lights are these neon tube things along the wall that strobe and are supposed to represent some 1960s version of zipping through space. I closed my eyes at once, but they pulsed through my eyelids. Aside from the distant screams, it was quiet at first. A quiet rollercoster is a bad rollercoaster because the only noise is that gentle tick-tick-tick as it pulls you up something very, very high. And when you go up up up on a rollercoaster, it means you are about to go down a long, long way.

Space Mountain ticked-ticked-ticked for a long time.

“I THINK…” Robin screamed to me. I never knew what it was that she thought, because this is when we went down.

Whoever designed Space Mountain was either too cowardly or too clever to murder people outright—or perhaps an innocent designer decided to make mechanized anxiety attack for medical purposes and Disney built it by accident. If you’ve had such an attack, you’ll understand Space Mountain at once: you have no idea what is going on, but it is terrifying and you have no concept of when it will end. It drops, it dips, it tilts you sideways so it feels like you will fall out, and, as an additional insult to your system, it shakes. And all the while it STROBES STROBES STROBES so basically your brain gives up trying to figure out what this thing is and either hits the button for your pleasure center or the button that says THIS IS WHERE I LEAVE YOU. Time has no meaning in Space Mountain. You are simply on Space Mountain until you are not on Space Mountain anymore and it spits you out on the other side.

We staggered off into the gift shop and I grabbed a display of key rings for support. Robin was ashen.

“That’s not what I remember,” she said. “I’m sorry.”

When I could speak (which was a while later) I said, “That’s okay. Everything is good now because I am not on Space Mountain anymore. Whatever I am doing will be okay because at least I’m not on Space Mountain.”

That’s basically how 2015 went for me.

A MEDICAL BADNESS

I’ve discussed my situation a lot in posts and tweets and in person, but I don’t expect you to keep up with these things. So I will summarize: I had a medical badness.

If you want the slightly longer version, this is it: I’ve had a condition for several years that required two surgeries. The condition itself causes various problems internally that you don’t always know about until something goes wrong. I’ve had issues with it for about 3-4 years now, but it wasn’t anything too bad. I just got very tired and sometimes dizzy and I was suddenly getting sick a lot. But I was basically sound. I did have a bit of a rocky time recovering from the first surgery, but it wasn’t anything too extreme.

I went in for my second surgery on November 17^th, 2014. That’s the morning I got on Space Mountain. I went in for something that wasn’t supposed to be a big deal, and from the point I woke up in the recovery room, I was on a weird journey of dips and falls and shakes and I had no idea what was going on—and neither did the eleven doctors that treated me in 2015, at least for a while.

The first thing that happened was that I got a post-operative infection and was hospitalized and treated with many IV antibiotics. When I was discharged, I never got better. I seemed to get worse. The early part was the most serious, when my heart rate and breathing were affected. I was in bed for most of December and January, or I was hospitalized or in the ER or at the doctor. I was confused some of the time and couldn’t move around much. My blood tests were coming back with some weird results that didn’t make any sense. My body temperature went up and stayed up for six months, and every day I had something that resembled a low-grade flu. The many antibiotics had ripped up my stomach, so for about two months, all I could really eat was Cream of Wheat and bananas. I was being checked by many specialists throughout this period, and many grim guesses were made as to what was going on, including Lupus, so it really was like an episode of House.

Hospital power stance: sometime in January or February

I was able to stand a bit more by February, which the second phase hit—that was pain. I also couldn’t control some of my muscles very well—it was hard to hold up my head or move my arms and hands at points. This only (and still only) affects a specific set of muscles in my upper body.

March was almost entirely spent in medical testing, and I mean that literally. By this point, many things had been struck off (including Lupus) and now I was sent to an amazing neurologist who is famous for his testing. I spent entire days and weeks in machines and hooked up to electrodes. I gave vials of blood to anyone who asked, and even to some people who didn’t. (You’re welcome. Happy birthday.) 

I had to give these 20 vials of blood in one go one day, which I did not love. I said to myself, “It’s cool. I’ll just take a picture and I can use it in a post someday.” TODAY IS THAT DAY. 

His testing gave the first inkling of what was going on. What I had apparently looked like multiple sclerosis. It wasn’t. It was, however, some kind of neurological damage. It was uncovered that my condition had given me a critical iron deficiency. I wasn’t low—I was empty. This is why I had been so tired and had been getting sick all the time before the surgery. This was probably why I got a post-op infection. That had weakened me. And then an element was introduced that was like the match thrown into the woodpile. Here, speculation takes over, but my doctors have made a very educated guess as to what it was. Something was introduced into my system at a very high dosage, and it attacked my central nervous system. I’m very deliberately not saying what the thing was, because what happened to me was a very specific set of circumstances, and I don’t want to tell a scary story about a common treatment. Things just lined up badly.

March: Wish you were here! 

The worst part of this was not knowing what was wrong, and a lot of the speculation was dark. We really didn’t know what my prognosis was. I couldn’t really be left on my own for very long, and the trips to the ER were frequent. But, things began to level a bit. I didn’t get better, precisely, but I learned how to live with what was happening. A combination of time and treatment slowly got me back on my feet. At first, the goal was just standing. Then it was walking out of the building for air. Then to the corner. Then I could sit at my desk for a bit and try to do a little work. At the end of July, I managed to get to GeekyCon, where I did my panels and got around with the aid of a mobility scooter. I was thrilled to go, but I spent a lot of time offstage feeling pretty ill and trying to get myself together to leave the room again. We discovered when I got back that my body hadn’t been ready for that level of activity, and I had several months of fallout. These included some unpleasant mood swings and fluctuations of my blood sugar and blood pressure. My body was like a clunky starship that only that one plucky pilot really knows how to fly. I developed a series of hacks and tricks to get things done. I began to learn what the various weird signals my body was sending me foretold. I carried glucose and medication and planned for the dips and the pain.

In late November, an additional medication was added to my regime that made a huge difference. My body seemed to level out quite a lot, and my level of daily pain dropped drastically. Some of the mental fog cleared up, as did some of the mood swings. On occasion, I have pain free days! And the pain now, while not great, is not as mighty as it was earlier in the year.

In the last few weeks, there have been more spaces than rough patches. I don’t want to speak too soon—but things certainly have gotten better. And FOR SURE I am not where I was this time last year, when we really weren’t sure what the future held.

The prognosis is a bit of a question mark. Neurological damage takes a long time to repair, so the timeline is now in terms of years, not months. But! I am managed very well. I take medication four times a day, and that keeps the worst of it at bay. (If I miss a pill, I know it.) I am largely VERY functional now. I can do almost all the things I did before—I just have to be careful not to overdo it.

WHAT IT ALL MEANS

Why am I writing this? Why am I telling you this tale of woe? BOO HOO HOO.

Well, I’m doing it for a few reasons. One is to explain what the hell happened this year. I didn’t expect this bodily implosion. I had lots of books on the schedule. I had a book tour and lots of appearances, most of which were canceled. When I could work, I spent months trying to catch up just on email and immediate deadlines, and I was slow. I pretty much lost about 80% of the year, in terms of writing and making things and doing events. At points, I was unable to read, so I even got behind on that. The stress of being so behind and so out of it isn’t super helpful when you’re sick for a long time. Writing sounds like one of those things that super CHILL, but when you get behind it feels like you’ve fallen off a moving train and are trying to catch up on foot. It was a huge bummer not being able to make things. I had thoughts like: EVERYONE WILL FORGET I EXIST AND MY BOOKS WILL TURN TO DUST.

And then I remembered that wasn’t true. Being sick messes with you. It sucks.

But! It can be pretty useful too. Here are some Things I Learned In 2015:

1. Whatever you are at the moment, you’re still you.

Sick you is just as valuable as well you. Don’t let the mindfog monsters tell you any different. Being sick messes with you. It can be isolating and reality-bending. I felt that a lot this year. Then I decided it was sort of the other way around—I really valued when I was with people. I needed them. It’s good to see how kind other people are. Being more kind became my goal. And it can be reality EXPANDING. I saw my body in a whole new way. I stopped taking simple things for granted—and taking things for granted is what gets us into A LOT OF PROBLEMS. Thank you to the Spoonies out there who helped me learn these things. In the Game of Spoons: You Win Or You Sleep.

2. Declutter Yourself

I love books about the magic of removing clutter. Getting sick is a great cleaner. Because I could do so little, I had to hit all the non-essentials with a flamethrower. I had to take care not to get overwhelmed, so I took better care with my online habits. If I saw bullshit coming my way, I said, NO THANK YOU, SIR.

3. No pants, no rules

Goodbye stupid rules! Sometimes I couldn’t walk very well so I would occasionally roll slowly across the room to get what I wanted and nobody could say A WORD ABOUT IT. I got a mobility scooter. I ate ice cream for dinner. I got a whole bunch of free hospital bracelets and Band-Aids. I never had to wear pants. And when I was able to do things again like go to a grocery store or drive a car, it was all VERY EXCITING.

4. Pain is just this thing

There’s no way of comparing pain—we don’t know what anyone else is feeling. We can only go by what is said. I can tell you that there was a non-trivial amount of pain this year. It rarely stopped. I had to make friends with my pain. It was like a bizarre roommate that followed me everywhere, so I spoke to it. “Come on, Pain,” I’d say. “We’re going to Walgreens!” “We’re going to write now, Pain.” “Hey, Pain, check it out! There’s a new episode of Bones!” I visualized my pain as a little monster, not unlike Animal from the Muppets, and that made me feel a bit affectionate toward it. Pain is just this thing. It can be horrific and shut you down, but if it lingers, then you have to make some kind of sense of it. I realized that I didn’t have to care too much, all the time. Sometimes this was easier said than done, but you can get pretty far through sheer bloody-mindedness. Sometimes it may hurt but—hey, sometimes it does.

Pain does have real effects on the brain. Constant pain leaves a mark. In armchair neurology terms, if you experience pain regularly, you can build a kind of neural superhighway to the pain center of your brain. You essentially train your brain to be better at experiencing pain. Conversely, there are steps you can take to block this progress and reroute the pain impulse. These are mostly meditative. I practiced daily meditation, which I credit as the reason I didn’t go bananapants during some of this. There are specific techniques you can use to deal with long-term pain. I highly recommend You Are Not Your Pain by Vidyamala Birch. This is not a quick-fix: you have to practice regularly. But you can change your experience of pain. This is my only “MJ Recommends!” of this post. 

(You may be reading this and have a pain syndrome that is very severe—I do not mean to suggest anything that diminishes your pain. If you ARE that person, this is me reaching out and saying, hey! How YOU doing? If you took a shower, or sat up, or looked at your computer, or whatever—COOL! If you’re sitting there thinking, “No one gets how stupid and horrible this is. I’m alone.” Let me tell you—YOU ARE NOT ALONE. I see you. You look awesome. Let’s have ice cream and stare at the wall together!

5. SO WHAT

So What is the best phrase. It helped in dealing with anxiety, and it helped with this. I had to accept some of this crap was happening. I didn’t want it to happen, but it did. Sometimes you have to ride the ride. So what. You be you.

AND NOW…WHAT I AM DOING IN 2016

I was writing books and making things when this happened. I am back doing that! Obviously, there have been delays. I hope you did not FORGET me, if you KNEW ME AT ALL. And if you don’t KNOW me, maybe you are ABOUT to.

I am going to be announcing a NEW BOOK SERIES soon, as well as updated dates on SHADES OF LONDON BOOK 4 and SCARLETT BOOK 3. I am also making OTHER, SURPRISE THINGS. I do go a bit more slowly, but I also work more effectively now, so the delay is not SO great.

I will resume ASK AUNTIE MJ here on Tumblr, so you can send your questions into the Ask box! And if you emailed me, I am sorry if I did not reply. Again, I’ll be more able to do that in 2016.

At home, I am going to start my physical rehabilitation! I have not been able to go to the gym or do proper exercise for an entire year. I will be working with a physical therapist and just VERY CAREFULLY IN GENERAL to regain strength and control, as well as endurance. I may keep a journal of this because I predict the journey back is going to be interesting!

I want to thank the many people who have supported me this year, especially my partner, Oscar, who had to do everything I was unable to do, which for a while was just about everything. My family helped, as did my friends—so many friends who sat in hospitals with me, or came to see me, or carried my stuff. My mother the super nurse ran my entire case file. People like Nurse Erin from the internet answered DMs in the middle of the night when things got bad and I didn’t want to freak my mom out any more. The many messages of support helped—I read them all. Thank you. 2015 showed me how very, very lucky I am.

And thanks to the makers of PODCASTS, because podcasts got me through it all.

I have some neurological problems, but okay!

I am coming back in 2016. Expect me.

Suck it, Space Mountain. Mama’s in the gift shop now.

Because I’m curious

lucysaxonbooks:

If you write in any way, reblog and tag with your preferred font and font size for writing

Frutiger Next LTCYR UltraLt 14,9