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The day after the Inauguration, I had a long conversation with someone who was fighting despair. He was obviously a smart guy, educated, well-spoken, reasonable. He was trying to make sense of what was happening on the national political stage and come up with a plan to fix it, and he was failing. His failure, to which I imagine he is at least somewhat unaccustomed, was causing him a lot of distress.

I told him, “This is an unprecedented and chaotic time, and there isn’t a simple easy fix. No one knows what is this is going to lead to in the future.”

I want you to pause and let that sink in: No one knows what is going to happen.

Seriously. I don’t care how smart any one individual is. They do not know what is going to happen. Most of them do not even have all the facts. Unless X-men mutant powers have suddenly manifested around the globe, nobody knows what the future will bring. They can guess. They can analyze. They can plan. They can string together a line of facts with speculation. But they cannot know.

Why does this matter?

Fear has two sides. On the one hand, it can be an effective weapon. It can galvanize us into action, overcoming the impulses of laziness, denial, and apathy.  It can help us develop courage and integrity. It can act as a loud warning siren that something has gone wrong in the world around us.

But if left unchecked, fear can spiral out of control. It can deepen into despair and defeatist thinking. It can overwhelm and paralyze. It can lead a person into believing there is nothing they can do.

And spending too much time dwelling on and being terrified by an unknown future can lead to this spiral of despair all too easily.

How do we combat this? By aggressive self care, by acknowledging that we do not know what the future will bring, and by empowering ourselves by focusing on concrete actions we can take.

But Amy, I hear someone say, what good are my actions? They won’t make any difference.

And to that person I say, I understand how you feel. We are, each of us, tiny specks of sand being blown by the winds of history in the making. It is an uncomfortable feeling.

But you are wrong. Over and over again in this blog, I have written about the importance of the individual’s choices, about how we impact the world around us, about how living a mindful and examined life matters. And that has never been more true than at this moment.

What you believe matters. How you choose to conduct yourself matters. Acting with integrity matters. Reaching out and supporting your friends, your communities, your families, that all matters. Staying engaged and informed matters. Donating matters. Becoming engaged in the political process matters. Organizing matters. Protesting matters. What you create as an artist matters.

You do not have to conduct a very deep dive into history to find concrete examples of how these things have impact: various independence movements; women’s suffrage; the Civil Rights Movement; the LGBTQ rights movement; the Tea Party. And that’s just off the top of my head. These sorts of things are usually messy and often deeply imperfect, because we as individuals make mistakes and are deeply imperfect. But over time they can change the status quo. Our actions do matter.

And if the fear is strong in you right now, know you don’t have to do it all, and you don’t have to do it alone. That is why organizing is so important, because when it works well, you become more than the sum of your parts. You support each other. You don’t have to be an expert on every single issue. You can take breaks. You can focus on your strengths and not beat yourself up so hard over your weaknesses. You can raise up your voices together, and a million voices are a hell of a lot louder than one single voice.

As Dylan Thomas so famously wrote:

“Do not go gentle into that good night.

Rage, rage against the dying of the light.”

Fight against despair because it will lie to you. It will tell you your integrity and your principles no longer matter. And that is simply not true.

Who you are will always matter.

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Well, 2016

I tried to write about 2016 this past week and I couldn’t do it. I wrote some words, but then I thought, these words don’t matter to me, and I let them languish unpublished. Instead I spent most of the week alone, reflecting and resting and, perhaps most of all, listening, giving myself the deep focused listening I craved.

When I think of 2016, the first memory that comes to mind is a day in early August. I was lying on one of those vaguely uncomfortable exam tables in a small private room at Urgent Care, wearing jeans and a thin cotton hospital gown. I was cold. I was frightened. I kept accidentally beginning to cry, not a loud sobbing with lots of tissues but more of a silent scream where I’d suddenly find tears plastered to my cheeks. My head hurt so badly, I was so confused, my brain kept betraying me again and again. I was alone.

I was waiting for my CAT scan to find out if my brain was bleeding. If my brain was bleeding I’d go in for brain surgery. At least that was my understanding from the brief forbidden peek on the internet I’d allowed myself. If I went in for brain surgery, who knew if I’d come out. It didn’t sound particularly promising. I knew I’d do whatever the doctors said without asking questions because I wasn’t capable of making any important decisions and there was no one else there to help. At that moment, it was out of my control and all I could do was sit and wait and try to hold myself together even though it felt like I was watching my brain disintegrate.

I wish somebody had been with me then. And I know some of you reading this right now are wishing you had been there, and in my imagination I edit it so you were there holding my hand. There is some comfort there. But at the time, of course, I wasn’t able to imagine things, and I couldn’t even access or control my own thoughts properly, and I was very alone, and I thought: “This is what people mean when they say everyone dies alone. I never realized quite how horrific that idea was until this moment.”

But I didn’t die. Instead I got some valuable practice, and maybe next time I’ll do better. Maybe next time I’ll find a small core of peace inside myself. Maybe next time I’ll have more grace.

When I think of my 2016, I think endurance. I endured, and I’m proud of what I accomplished. I made some difficult decisions that led to big changes that I believe will make my life better down the line. I suffered from the worst injury of my life and I didn’t give up. I learned a lot. I didn’t close down, and I held onto my vision of a brighter future. I found moments of joy and connection even in the midst of tremendous struggle. I went to great lengths to take care of myself and to respect myself, and I feel like, even though it was very hard for me, I did a better job of it than perhaps I’ve ever done before. I’m very tired, but here I am.

I didn’t like 2016, but I’m grateful for the time I’m getting, even when it really sucks. I feel lucky to be here.

For all of you who had good years, I’m so glad. You keep my hope strong. And if you had a bad year, I admire you for hanging in there, and I really hope the next year is better for us both.

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I’m sitting here typing this on the longest night of the year. After this, the nights will be a few minutes shorter, and then a few minutes shorter again. At some point in the not-so-distant future, it won’t be dark at 4:15 in the afternoon. The sun will make it till 4:30 and then even 5:00.

I can’t give you words of comfort about the state of the world because I don’t have any right now. What I can give you is comfort on a more personal level.

Every year I make a photobook of highlights from the year that’s just gone by and give it to myself for Christmas. This year I didn’t want to make one. I put it off, and then I put it off some more. I thought it would be depressing. 2016 was such a challenging and difficult year for me personally, what photos would I even have to choose from? But finally I forced myself to sit down and start the job by telling myself I could always just make a whole book of cute Nala pictures. No one else might enjoy looking at a book like that, but I would like it.

What I found, though, as I started putting photos onto pages, was that there was still plenty to be happy about in 2016. My book wasn’t a lot shorter than usual, and it wasn’t a lot sadder than usual. There was still joy and love and silliness to record on its pages. There was still hope.

And I realize, when I think back on the year, how much of my joy derives from the people I care about. It’s been easier than usual to forget this year because there was a lot going on, and much of that was disappointing or ugly or just plain tough. But when I think about the year, I don’t just think about all the hard times. I also think of all the people who were there through the hard times.

I think of friends in the Bay Area who took me out, who danced with me, who listened to me without judgment, who fed me sushi and waffles and peanut butter pie. I think of those friends who supported me moving to Seattle one hundred percent even though they were personally sad I was leaving. And I think of the phone calls and messages since I moved, and how those friendships haven’t gone anywhere.

I think of my friends at Rainforest who helped me figure some stuff out. I think of my friends in LA who I hadn’t seen in years who welcomed me back into their lives with open arms. I think of my high school friends with whom I shared a special reunion. I think of my friends at Worldcon in Kansas City who looked out for me since my health wasn’t good.

I think of my friends in Seattle and how humbled I have been by their kindness and generosity. I had only been living here ONE MONTH when my life completely fell apart, and you all stepped up to the challenge, even though many of you barely knew me. I can’t think about it without crying. Your willingness to show up and be there for me and help me means everything to me. And there were many people supporting me from a distance as well. You showed me how good people can be and how little it sometimes takes to make a huge difference in someone else’s life. You have forever changed my experience of the world.

I think of my close friends, my inner circle. The ones who know me best, who know my faults as well as my strengths and love me anyway. The ones who walk beside me as we share what we think and how we feel. The ones who understand the less obvious things about me, the ones who validate my feelings, the ones who I trust. I feel so lucky to have met you.

And I think of Nala, of course, who is loyal and sweet and mischievous and empathetic. And who was so scared of being left when we’d moved to a new state that she learned how to grab onto my legs with her front paws while standing on her back paws. There is no one more concerned about my welfare than that little dog, and she brightens my life every single day just by being herself.

When we go through hard times we learn a lot, both about ourselves and about the people who are around us. What I learned this year is that even when everything is going to hell, some people will be kind and they will be true. And there are an awful lot of people out there who love and care about me, and who I love and care about back.

On the longest night of the year, I think about all of you, and then it doesn’t seem so very dark.

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In some ways having a brain injury isn’t so different from any other injury. It’s about the long game. It’s about keeping up the spirits so you can give your body the time it needs to heal without going completely insane in the process. It’s about figuring out how to meet your basic life needs while dealing with new restrictions. It’s about finding the things you CAN do to distract yourself from the things you can’t do.

That being said, it has been three months and I still can’t work on fiction. That this state of affairs does not make me happy is an understatement. I ignore it as much as I can because of the importance of the long game, but it chafes. A writer writes. I am not writing. This state of affairs feels wrong. I keep grasping at it and coming back with empty hands.

I also cannot dance, and I cannot play most board games. I can’t do anything that requires large amounts of concentration or that is particularly mentally taxing. I am very tired most of the time and I have to take naps most days. I don’t deal with stressful situations as well as usual, and I try to avoid them when I can. I am supposed to experiment with activities, but if I miscalculate, I have relapses that last several days and are fairly miserable.

But. I can drive again, which is huge, and I can read the majority of the time, which is even better. I can keep the practical aspects of my life going indefinitely at the capacity I now have, which is a big relief. I can get out of the house. I have plenty of lovely social time. I can take care of Nala. Sometimes I feel pretty okay.

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I have a lot of time, although not as much as you might think, given all the time I must spend sleeping and napping and resting and deliberately not focusing too much on any given thing. So maybe it’s not as much that I have a lot of time as that life is moving at a different pace, and it is much slower than what I am used to. I can only do a few things per day so I must choose carefully.

Sometimes I feel upset about my limitations. I want to be a better friend, a better writer, a better human being. I think, why can’t I just do this? Why can’t I just handle that? But I try to think as little as possible about this as well. I am doing the best I can, and that’s what I try to think about instead. My focus has to be primarily on me, whether I like it or not.

I thought I’d be all better by now. I am not, but I am better enough to look back at how I was doing before and feel appalled. In August, I’d reach for my brain and it was as if there were a wall preventing me from accessing it. I’d batter myself against the wall, frantically trying to break it down, to no avail. I tried to keep up as good a front as I could, but I don’t know that I’ve ever been so lost.

I can reach for my brain now and it is there. Even on bad days. There is no longer a wall. Even though I’m tired, even though I’m not writing, even though my life revolves around being careful. I appreciate my brain so much.

It is an ongoing process, this convalescence. It is boring and frustrating and uncomfortable. It is also humbling.

But every day there’s at least one bright spot. A book, a show, a doggie snuggle, a message, quality time with someone I like. It’s about the long game, and these precious things remain.

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You know when you really can’t be perfect? When you’re recovering from a brain injury!

Eight weeks ago I was in the car accident that gave me this concussion. Three weeks ago I was back at the doctor’s office because my symptoms were still so bad. “You need to go back on brain rest,” the doctor said.

But, but, but, I had never really gone OFF brain rest. I was so upset with this advice, even though it was obvious. Yes, I needed to rest even more. Yes, even though it was interfering with everything in my life. I spent about twenty-four hours being really upset while simultaneously trying to set everything up for what I knew I had to do while, you know, my brain was refusing to cooperate with me.

Since then, I’ve kept everything as simple as possible. I couldn’t shut all stress away, but I could certainly avoid the majority of it. I couldn’t meet the high standards I’m used to setting for myself so I stopped aiming for them. I settled myself into my new reality of Healing from Brain Injury as comfortably as I could.

I’ve developed this mental shrug. It’s for all the times (and there have been so many) when I think of how I would normally do something or how I ought to do something. And then I mentally shrug and say to myself, “Well, that’s not going to happen.” Some of them will obviously have small consequences, like I can’t deal with going to a new dentist right now so there’s going to be more plaque on my teeth when I do finally go and that will probably suck. But it’s amazing how many of those things don’t actually seem to matter all that much.

In being forced to simplify my life so extremely, I’ve realized how hard I am on myself when I’m fully healthy. I am so hard on myself! Even now, I think to myself, why did you miss that gathering, you are such a flake, or why haven’t you texted or called this person, you need to try harder, and then I catch myself and am appalled. I have a brain injury, you ridiculous self! I don’t have to go to any events or talk to anybody and I get a pass because BRAIN INJURY. I don’t have to say everything perfectly because BRAIN INJURY. I can’t figure everything in my life out right now because–yeah, you guessed it–BRAIN INJURY. I doubt I’m only being this hard on myself because I’m convalescing. I feel like my little shrug is going to be useful for a long time to come.

I try to go outside every day and walk with Nala. Sometimes we walk for over an hour. We walk surrounded by lush greenery, and if we walk far enough down the path we can catch a glimpse of Lake Washington. Sometimes we cut through the fern forest and pretend the car sounds are the wind blowing through the fir trees. Sometimes Nala tries to convince me to walk in the mud.

We walk and I feel more and more like myself again. I may have to avoid most stress, I may struggle with headaches and mood swings and fatigue, I may be unable to do many things, but I can walk.

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I’ve been asking myself who I am all these weeks. Who am I when I can’t write anymore? Who am I when I’m easily overwhelmed by stimulus and decisions and stress? Who am I when I must abandon my usual goals of perfection? Who am I in this new state, in this new apartment, surrounded by new people and places and things? Who am I when I can literally feel not like myself?

My life is stripped down to essentials, and I am too. I am relieved to find there is still someone there. Someone who is not defined by physical place or relationships to others or passions or hobbies or work. Someone who is not even necessarily defined by this moment’s particular thoughts.

I stare into space. I breathe. I shift to find a more comfortable position for this body I’m wearing. I breathe again. Time passes differently.

I’m still here.

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It is hard for me to know what it is I want to say. This might be because I have a brain injury, or then again, it might be because I’ve recently gone through a traumatic experience that is hard to talk about. I revolve around this question–is this a brain injury issue or something else?–several times every day.

I didn’t know anything about concussions a month ago, except that you’re not supposed to sleep through the night with one. Only that might not be true because I slept through the night eight hours after sustaining a serious one and didn’t die. Hooray?

I mean, yeah, definitely hooray. I really really really don’t want to die right now. There were times when I was in such bad shape I was asking to make sure someone would take care of Nala if something happened to me and trying to give instructions about reaching my sister, who is off on her annual silent retreat right now and therefore complicated to reach. We (we being mostly myself and my friends Sara and Tony, who are two of the best people I know) tried to downplay it a bit on social media because freaking everyone out didn’t seem like the thing to do, however much I personally was freaking out, but now things have gotten a bit better, I will say things were pretty bad. They are still not great, although I look great and if you have seen me, I might have seemed great, and when I have company to distract me, I am certainly greater than I am the rest of the time.

One thing about concussions I didn’t know is that concussions can cause mood swings, anxiety, depression, you name it. Like, BIG GIGANTIC MOOD SWINGS. Like, I am in so much pain and it is very early in the morning and I don’t know what to do and I don’t know who to call so instead I will just cry for an hour straight type of mood swings. Combine those swings with cognitive impairment that makes it almost impossible to engage in critical thinking or make decisions and things get very interesting indeed.

In case you haven’t gotten it, by interesting I mean nightmarish.

Focus in on me that morning, in pain and sleepless in the dark in what felt like the middle of the night but was probably more like five a.m., questioning myself, my life, and the decisions I’d made that had led to me lying there, terrified and alone. What, then, did my life amount to? I suddenly wasn’t sure. It seemed as if every other person on the planet was an impossible distance from me.

I questioned my recent move. I questioned all the time I’ve spent writing books that practically nobody has read. I didn’t question relationship choices, but I did feel terribly sad. All that time and effort fostering connections with other people, and there I was, so confused I couldn’t figure out if there was anybody I could call who would be okay hearing from me at that time of night and in that terrified state of mind. I wanted my sister very badly.

I thought of this blog, and I thought, “That has been some good work, even if hardly anyone reads it.” I thought of Nala and how devoted we are to one another. I thought of integrity and courage–even a faltering courage, which is what I was experiencing at the time–and love. So there was some comfort.

Eventually I did call a friend, cried for another half an hour on the phone, and said I wanted to go to the doctor. Voluntarily. I voluntarily thought it was a good idea. (For context, I hate going to the doctor. I never want to go. Sometimes I force myself because going to the doctor is part of being an adult.) I kept coming back to the panic of knowing I couldn’t do this, and the only answer I could come up with for not being able to do it was to get some help.

When the advice nurse told me to go in, I was relieved. If the doctors could do something to alleviate in any way even one of my symptoms, I thought it would be worth the horror that is Urgent Care when you have a concussion and are super confused and light and noise sensitive and about ten seconds away from bursting into tears at any given point and also have neck and back injuries that make sitting in their uncomfortable chairs a particularly unpleasant kind of torture. That is how awful I felt. When the nurse brought out the needle to take a blood sample and get me started on the IV, I again felt relieved, even though I have a lifelong phobia of needles. And indeed, he had to make two tries to get the IV going because of my teeny tiny veins. Whatever, I thought. It was so worth it. Anything to lessen the pain. Anything to blunt my awareness that I was about to go in for tests to show whether my brain was bleeding and the knowledge, given to me by surreptitious forays into the internet, that if it was, there was brain surgery in my near future. I told Patrick, who was with me during the wait, that if I went into brain surgery, THEN he had permission to contact my sister.

There was no brain bleeding. I want to say thank goodness, but that doesn’t even begin to cover it. Instead there was me trying to get all the information I needed from the doctor even though I was confused and exhausted and not even with it enough to think to take notes or record the conversation. But hey! I had already figured out how to take cab to Urgent Care, and that had only taken me an hour of dithering.

Even doctors don’t seem to quite get how disorienting having a concussion can be. When your primary means of self-definition is your brain and suddenly your brain isn’t working right, it feels like the bottom has fallen out from under you. Suddenly easy problems seem completely insurmountable and normal stresses want to consume you whole. And it’s not like brain injury is a particularly normal stress anyway.

Today marks the three-week anniversary of my car accident. Like I said, I am doing somewhat better. I have good days and not-so-good days. Yesterday was pretty bad, today is better. I have recovered some of the cognitive function I was missing, which is a relief, although I still become easily overwhelmed with decision-making. I am no longer stuttering or pausing as much between words, and the sound and light sensitivity have improved. I still have spikes of anxiety. I still have sudden weird memory gaps. I still lack focus. I still have frequent terrible headaches. My neck really hurts. When the pain is bad, I become more confused. I’m exhausted all the time, and I usually need an afternoon nap. If I don’t get enough to eat and drink, things can go downhill quite quickly.

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Me today. Turns out concussions aren’t always very visble injuries.

But I am here, and I am very grateful for that.

Next time I am well enough to write, I will tell you about the help I’ve been receiving and how it feels like a miracle.

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Yes, I was in a car accident on the freeway a couple of weeks ago. A guy ran into the back of my car in stop-and-go traffic, and I ended up with a concussion. At first the doctors thought it was a mild concussion, but last week they upgraded it to a more severe concussion.

For those of you who have never had a concussion, I can tell you it is both painful and terrifying. Also frustrating. At least in my experience. Once I am well again, I am happy to answer questions for writers who want to portray more realistic head injuries because now I know a lot about it.

I am not supposed to be writing. Or be using screens very much. Or doing lots of other things. It is unclear when I will be able to do more, but hopefully it won’t be too many more weeks. It is hard to say. Right now I spend a lot of time sleeping and hanging out and petting Nala.

I am writing this to let you know I haven’t forgotten you. I still write blog posts in my head. This is not the best idea as it gives me a headache, but sometimes I do it by accident. I look forward to being able to write more. I especially look forward to being able to write an appreciation to all the people who have been incredibly kind and generous and have been helping me and keeping me company during a dark time. I love you all.

Please don’t forget me either.

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Nala looks disheveled and out of focus…kind of like how I feel.

 

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