80%

I’ve been struggling with a new symptom of whatever non-named autoimmune disorder I have: Immune-Mediated Cognitive Dysfunction. It’s a fancy way of saying I have brain fog.

For the last few months, I’ve been noticing that it’s harder for me to read and retain information. I’m more forgetful and sometimes I have difficulty saying words or even stringing sentences together. I need more sleep (9 to 10 hours) and I run out of energy faster. In short, my executive brain function is being put into “Power Saver” mode.

Just in case you are wondering, yes, it’s terrifying.

To be clear, it’s not that my reasoning abilities are gone, I just have less of them. I can still solve a task, it just might take me longer. I can still juggle multiple tasks, but I won’t finish them all as quickly or as cleanly as I once could. I am functioning anywhere from 80-85%.

This isn’t just something that sucks, it’s really difficult to get used to. My mind is still used to functioning at 100% capacity. I am not, nor ever have been a stupid person. And now, I’m not as smart. I’m not as quick. I’m not as bright. There’s not use saying, “Oh, that’s nonsense, you’re brilliant.” All the wishing in the world won’t make this untrue. I can’t stretch as far as I once could, and because of that, I’m still tripping up when I try.

So, please be patient with me. I know what I can handle – lots of trial and error in the last months have helped assure that I cannot miss the line in the sand. I know what I’ve got going on and what I need to do. Please don’t bring this up, or my illness in general, unless I bring it up with you first. I have to live it every day, it is therefore not my favorite topic of conversation. Please don’t question my judgement on how far I can push myself – I know. Sometimes I have good days, and I just want to have a good day and not be reminded of the many bad ones that I have. Please, be kind.

Retrospect

I feel a bit guilty about not writing more about 2014. There is a non-trivial part of me that feels I should have shared more about my adventures in the moment.

There is absolutely no arguing that 2014 was an EPIC year for me. It was my first year of marriage. I traveled the world, met more amazing people and lived in Japan. I admit that I’m a bit impressed that I was able to pull it all off. There were a number of times when I thought it was all going to fall apart.

As amazing as last year was, it was also hard. Impossibly hard. And impossibly hard to describe because it was impossibly hard to do. Hard in ways I couldn’t have even imagined before the fact. Hard physically – on average I got on a plane every four days. I only slept in my own bed for three or four months of the entire year. I have a chronic illness that requires  It was emotionally draining – when I was in Japan the only person I could really walk to was Will (who is great, but can’t and shouldn’t be my everything). When I wanted and needed to see friends and family I had to do so in giant tours that I was so exhausted by only a few stops in that I couldn’t really enjoy my time with them fully. I never felt like I really had a home. I couldn’t quite get comfortable in Japan – I was away too much and even if I had, I would have had to just given it up shortly anyways. And that would have been for the second time in two years.

2014 was amazing and utterly exhausting.

Talking about it while it was all happening, without some perspective would have been terrible and I’m glad I didn’t though I did take endless notes so I could later. And it’s starting to be later. It’s still too soon to talk about some things though there are things about last year that I could go on about for ages. For instance, the joys of the Japanese rail system. I’m not much of a train fan, but even I could see the beauty of that system’s precision.

Having an introduction to the blogging of my last year seems impossibly dramatic, even for me – but the truth is, I need to take this slowly. I need to process this with time – which is exactly what I couldn’t do last year.

International Incident

Well fuck. Looks like I’m not going to Eastercon after all.

For various reasons, my doctor has asked me not to travel internationally for the next six months or so. I admit, when my doctor brought this up, I laughed. I mean, after last year, now someone is going to ask me to sit still?

I’ve got lots of thoughts and feelings about this. One part of me says “Fuck the doctors, I’m too young to be ill!” another part says, “Don’t be a fucking moron, listen to your doctor!” One part says” After last year, I’m pretty sure international travel won’t kill me,” and another says “This is a really good excuse to hide in my couch forever.” The biggest part of me just thinks “Fuck, I’m going to miss my friends.”

While I’d like to shrug my doctor’s advice off, I’d be an idiot not to take her seriously. Guess I’m going to have to find alternate plans for Easter weekend.

A New Normal

You know what’s weird to lack? A daily routine.

Most people have some variant of get up, go to work, come home, sleep with a bunch of little personal details. What they eat for breakfast, if they eat breakfast, do they eat with a spouse or on the way to work and etc. That sort of thing. We have routines from a young age starting with school and moving to work of some sort. They say that it’s good to break a routine every once in a while and it’s true. Too much of a thing, even if it’s a good thing, can be a bad thing. Change is good.

But not having a routine is a strange thing. You grasp for one that might not be there in an attempt to right yourself because not having one feels a little bit like a ship tipping over. Life last year didn’t allow for much of a routine. Now, truth is, I did that to myself. Nobody forced me to get on all those planes and to live in airport lounges, but I would have been desperately lonely had I not. Pro-tip: don’t spend the first year of your marriage in a country where you can only speak to your husband. We made it, but I’m not entirely certain how we did. In the end, disrupting my routine to the point that my routine was chaos was worth it, but it wasn’t easy and now I’m trying to remember how to build one again.

I don’t have work to go to, I don’t have school to go to yet, but I can’t exactly spend the day in bed. So what do you do when you have nothing to do? Let me tell you that while there is a small urge to clean everything in the very beginning it is small enough that I don’t actually get to clean everything and eventually I just end up bored. Being bored is no fucking fun. Having nothing to do is crazy-making. Remember that the next time when you’re talking to someone who is unemployed.

Turns out that building your own routine isn’t easy. I have no reminders or guidelines, I have no structure outside of Will leaving and coming home from work. I have email that I need to get to, but surely I can get to it later, right? I’m a procrastinator by nature. You don’t make a procrastinator their own boss for a good reason. Except now I am.

Thank ghod for Japan’s obsession with stationary. You couldn’t turn a corner in the town we lived in without running into a stationary store that had incredibly adorable pre-printed To-Do Lists. I have travel themed lists, cat themed lists, penguin themed lists and even book themed lists. And those lists are how I get things done around here. I had to bribe myself at first. Every time I got something done, I allowed myself to open a piece of mail from a friend or one of the Cards Against Humanity Bullshit items. But now I don’t need the bribes. The simple act of crossing through the list and getting to flip another page is enough motivation. I push myself to get my To-Do list done as soon as I can.

The real trick for me was to know what was reasonable to put on the list. If I put a bunch of small items on the list, it can seem like my list is longer than the Wall of China. If I put too massive of a job on my list, it feels like a boulder that I’ll never be able to work through. Learning to break up your tasks into manageable chunks is something you quickly learn in the real working world, but I’m not sure if I’ll ever get back to that world. Working through a list consisting of ‘Write letter to Brigid’ and ‘Call doctor’ can be annoying sometimes. It feels like I shouldn’t need a list to do those things. But when you’re sick, little things add up and become big things. While I’d rather my routine be filled with big things, right now I’ll settle for getting something done at all.

Doctor, Doctor

Turns out I do not, in fact, have a bad case of loving you. I have a bad case of nobody knows what the fuck is up with my body.

On the bright side, there is in fact medical terminology for what’s up with my body: Isolated, Idiopathic Colonic Ischemia. Basically the blood stops flowing to a certain area of my colon and it starts to ulcerate and die. And then for some reason, it stops and puts it self back together again. I chose to believe that this is further evidence that I am in fact, a Time Lord.

The down side of this is that while my doctor knows what my body is doing, she doesn’t know why. And that is unfortunately what we need to know. While it’s good to know the name of what is happening to me, it’s the name of a symptom and not a treatable disease. My doctor has run out of options for tests for me that will show anything new. She threw the book at me and nothing took. This is heartbreaking and crazy-making but a little unsurprising. She’s come further than any other doctor. She was the first one to look at Crohn’s and autoimmunes. Hell, she was the first doctor to tell me that my pain was real and that I should be taking pain killers which she then gave me.

Today we talked about a surgical option. During a colonoscopy she’d mark the area in my colon that has the most problems and then a surgeon (at a later date) would cut that section of my colon out. Sounds fun right? You know what’s more fun? They’re not sure exactly what would happen if they did that. They hope it would be gone and never come back, but they have no hard numbers to give me. It’s just as likely that it would come back in some other place or stronger than it is now as it is that it would be completely fine. They have no sureties for me, they just have hope. And that’s cool, I like hope. But you know what I like more? Solid evidence before you cut into my body.

So I’m going to get a second opinion. And I don’t know what is scarier, the idea that it is my best option or that it isn’t. Hope becomes a dangerous thing when you’re sick. I’ve gotten used to being sick. I’ve changed my life. I’ve found a way to be happier with a simpler life that doesn’t involve me working heavily. I’d just decided to go to art school. So what do I do if this fixes everything and I can go back? I know playing What if.. is crazy making, but when you’re chronically ill, playing What if is your entire life.

I think it’s time for a drink.

Performance Anxiety

I want to spend the weekend in Boston. There is a convention there that I very much want to attend – Arisia. At Arisia will be a very high concentration of my friends from all over the US: California, Minnesota, Kansas, Illinois and of course, pretty much the entire Eastern seaboard. I’ve missed all of these friends deeply over the last year even though I’ve been able to catch some time with them and I’ve been looking forward to this convention for a while now. But the thing is, I really don’t want to go.

Getting to Arisia involves spending four-ish hours on a bus and right now, that is the second to very last things I want to do. The only thing I want to do less is getting on another fucking airplane. Twenty-fourteen was amazing for a number of reasons – one of them being the number of new and exciting places I traveled to – but it has me 99% burnt out on travel. The grass is always greener and last year the other side was a home I didn’t have. Now I have that home and even though I logically know that it will be here waiting for me when I get back from Boston, it makes my skin crawl to think about getting on that bus.

It’s been difficult to write about my issues with traveling. I don’t want to seem ungrateful and I know just how magical it all looked. The reality was much different. I desperately missed my friends and family. I was frequently ill and the stress of traveling only made things worse on my body. A simple trip ‘home’ was expensive, time-consuming – usually at least fourteen hours one way, and involved dealing with customs and immigration. Usually by the time I got ‘home’ I was exhausted and barely had energy to enjoy the time with the people I had traveled to see. It was beyond difficult.

It’s not Arisia’s fault that it is the year anniversary of all that starting. I’m sure that I’ll have a great time there. But that doesn’t make me feel much better about getting on that damn bus.

Limited Vocabulary

What does it mean when I say “I’m sick”?

I wish I knew how to explain what is wrong with me succinctly. I wish I had a diagnosis that could sum it all up and provide answers. I wish my pain and symptoms weren’t so embarrassing to explain to doctors over and over again.

I wish I could accurately describe how it feels to not be in control of your own body. I wish I could describe how disgusting it feels to be second in command of myself. I wish I knew how to say what it feels like to be in pain every day.”It really fucking sucks” just doesn’t seem to cover it. I don’t have the words to do that subject justice.

I wish I knew how to explain how hard it is to take pain killers daily. Not just physically, but mentally. To need something to fix you. If I had the words, I’d tell you just how easy it is to get addicted to pills because sometimes you just want to feel nothing.

I would tell you how hard it is to not be able to work. To not be able to do something you love. To have to reevaluate where your worth as a person comes from when you can’t support yourself. I’d have a lot of words on that.

I would tell you how boring being sick is. And how crazy that can make you. And how no, having more time doesn’t help when you are depressed, it just gives you more time to think about your failures. It gives you more time to wonder if all of this is your fault, or in your head.

There are so many things about being sick that I wish I could tell you. But I can’t. I just don’t have the words.

In Limbo

Will and I are home. Sort of.

We’re in Kansas City until Monday, then Chicago for New Year’s, and we finally move back into our permanent residence in New York City on January 5th, 2015. Even though we’re not quite done yet, it feels like I’ve been able to release half a breath I didn’t realize I was holding so tightly. Of course with Christmas Day festivities I felt out of breath all over again. I loved every minute of it. This holiday season is going to be and already has been a blast.

Though being back has been wonderful and we were ready for our adventures to be put to rest, I found myself dragging my feet about leaving. No doubt that some of it was due to the actual packing process. It shouldn’t surprise anyone to find that I procrastinated as much as humanly possible and was still in fact, putting things into suitcase when the packers came to deal with everything that we weren’t taking with us on the road. It took the company only four hours to pack up everything we had brought with us and accumulated over the year. I was grateful that it was someone else packing our stuff instead of me, but having eleven people in my apartment, touching my things, when I didn’t speak enough of their language to communicate was a deeply uncomfortable situation. Living in a country where I wasn’t able to talk and be understood was probably the hardest thing I’ve ever done. Our apartment had become my safe zone. I didn’t have to pidgin my way through conversation or emphatically gesture to be understood there. Even though it was my last day there, having that taken away, and in fact, having that be part of how we left was difficult. But, it had to be done. After they finished putting our things in boxes we went to our last dinner at my favorite yakiniku place (well, the only place I knew of…) a short train ride away. We made one last S’MORE in our awkwardly empty kitchen, shut off the breakers, and then I was in a car to a bus to a plane to Kansas City. Kansai, Honolulu, Los Angeles, Minneapolis, Kansas City. Seventeen thousand, eight hundred and eighty-seven miles down, one thousand four hundred and forty-six miles to go.

I’m finding myself relaxed in a way that I had forgotten that I could be. My trips home to see friends and family were always refreshing but they were always also exhausting. While shy about meeting new people, I find myself sliding into depression without a certain amount of socialization that couldn’t be had in Japan. Most people combat this by hanging out with friends, usually so do I, but last year hanging out had a slightly longer commute. With a bit of jet lag. And the gas prices were just a little steeper. Now that I’m back, I’ve already started planning dinner parties and outings with friends and it’s fun in ways that it never was before. I’ve always loved getting friends together but never been crazy about the logistics. Now the logistics feel like a piece of cake.

The downside to being ‘almost’ back is dealing with the fallout from the false feeling of home. I’m staying with my best friend so it’s just enough home for me to relax, but just enough off for me to feel like I have to re-find my place in life. I don’t, or maybe I do, but I’m not actually home yet so I don’t know.

My life in New York City will be more than a little different this time around. I’m moving back with the knowledge that we’ll be there for the foreseeable future. I’m going back to school and I’ll have time to pick up hobbies and meet more friends. It’s easy to meet new friends while seeing the world, but it’s not so easy to maintain that friendship by actually hang out with them when your life is going 100mph. For the first time since college, I’ll be living somewhere without knowing when I’ll be leaving. We have an 18 month lease, but unless we find our neighborhood unbearable, we’ll probably extend it. New York is going to be home for a good long while.

I can’t wait to be home.

Countdown

Today started my last week in Japan. A week from yesterday I will board a US bound plane for the last time this year. I don’t know when I’ll come back here, though I know that I will. I know that I’ll miss this place. There is a more than small part of me that doesn’t want to leave. It’s the part of me that has come to know this place as home.

I’ve refrained from writing about my time here for a number of reasons but the biggest being that I  knew I couldn’t do justice to my experiences without the perspective only gained from time. Big adventures look awesome in hindsight. In the thick of things there is lots of angst, frustrations and pain. It would have been far too easy for me to fill posts with all of the hard stuff and forget to share the good stuff.

one of the hardest things has been my health. It’s no secret that I have a mystery chronic illness (to be clear, it’s a mystery to my doctor and me, too), but I haven’t done much to explain what that actually *means.* It’s a huge part of my life – something that I deal with almost every day. Life here has certainly complicated and exacerbated things, and it’s something that I probably should have been sharing about.  Figuring out what exactly to share is the tricky part. I want to loop people in, but not gross them out.  I’m working on finding that line. As much as I’d like to pretend that my health problems are minor annoyances that are an infrequent issue, they aren’t. I feel that I owe it to myself and my loved ones to be clear about what I’m dealing with. My medical stuff takes up a lot of spoons, and keeping it close to the chest takes up a few more. Time to change that.

While I’d love for this last week to be no work and all play, our apartment isn’t going to pack itself. Our movers will take care of most things but I still have to sort where our daily personal items are going, (with us for the holidays, dropped off by Will in NYC, plane shipment or sea shipment) do a crap ton of laundry and make a list of absolutely everything we own for insurance purposes. Prepare yourself for lots of before and after pictures and plenty of moving-related complaints. Moving sucks no matter what.

I wish I could find the pause button for life.

The Long Road Home

Today I will fly seven thousand miles to my home, but it won’t be my home for very much longer.

I spent a little time yesterday firming up my travel calendar for November.  I probably should have done this sooner, as November starts in two and a half weeks, but there are always so many places to go and people to see that I like to make the list as late as possible so I can try to fit everything in. Yes. I know this makes me a certain kind of crazy. But in looking at my travel schedule for the month, and really the rest of the year, I realized that I only have five weeks left in Japan. This is wonderful and sad-making and exciting and terrifying.

I cannot wait to be back living in the States. In fact, dear reader, you may have noticed that I spent a significant amount of time as a Japanese resident coming back to the US to see friends and traveling in Europe. Some of you may think that’s a waste of the wonderful opportunity that I’ve had to live here and that’s cool. Move to a different country on three months notice where you don’t speak the language and live in a community where you are ostracized and then let me know what you think. Until then, please don’t be offended if I don’t take your opinion too seriously. Also, living in a country where you are 99% illiterate does not for a good time make.

All of that said, I will miss parts of living in Japan and I will always appreciate the fact that we were given this opportunity. There are perspectives that can only be gained by living like we have this year. I would not trade those for anything. I will miss the strange beauty of this country that you can only find here. It is clean here, and they value natural beauty which reminds me a lot of living in the Midwest – it is very green. And while I wasn’t crazy about the quarantine rules that ended with my cat living with my in-laws for the year, being able to pet the deer in Nara and go to an owl cafe pretty much made up for that. I will also dearly miss the bathing culture. Our bathing room with a not even standard soaking tub is a million times better than a standard bathtub in the States. I will miss the shit out of the trains here. I’ve always loved traveling by train and Japan has spoiled me with its efficiency in this area. Amtrak, get your shit together.

I’m looking forward to finding our next home. In both of the places that Will and I have lived together the living situation wasn’t a decision that we made together, it was a matter of circumstance. In the first, I moved in with him to an apartment that I learned to love but never would have picked for myself or us. The Financial District of New York has some amazing apartments, but not much of a community around it. In Japan neither of us had any say in our living arrangements. Panasonic has for years, rented the same place in Mikage. It’s a beautiful residence very close to a train line that can easily deliver their liaison to work, and also potential children to some of the international schools somewhat close-by. It was perfect for the family they originally rented it for. Not so much for us. I cannot wait to find a place for us to live that will work for us, instead of finding ways for us to work with the space that we have.

However, for the second year in a row, I find myself not knowing where I’ll be living in three months. I don’t mean which neighborhood I’ll be in, I mean which time zone. I asked Will to look around at other cities he’d like to look in and we’re now waiting to hear back from a great firm that interviewed him in San Francisco. Will really wants this job. I really want him to get this job. Waiting to hear back on a job is hard. Waiting to hear back on a job that is keeping your from planning your immediate future is really hard. If Will doesn’t get that job, we go back to New York. To be clear, here, New York is a perfectly acceptable option. I have a great collection of friends on the East Coast that I will be happy to see on a semiregular basis. If we do end up in San Francisco, well…at least the flight back to see them won’t be as rough as it is now.

For now, a day of trains, planes and automobiles.

Nothing ever stays the same.

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