Also, they were super cool in the editing process about changing things they wrote about “a person with autism” to “an autistic person” and also about changing the link for more general autism information from Autism Speaks to ASAN when I brought that up. So added points for that.
|This is my collection of plants that I own. They are very pretty and
happy. I have to have plants at home or else it just doesn’t feel
like home. They are chilling out here enjoying the south-facing
window that they get to live by.
I talk a little bit about disordered eating habits in this post, as a heads-up. And also about guilt.
I am living alone now, and have been for a few weeks. I realized what I needed out of roommates and living alone was a better option for me at this time. (And I could afford it, although I have money-spending-issues*.) And also I want a furry friend, so I had to move into a pet-allowable apartment. I’ve been living alone with just me and my plants the last few weeks and I’ve had time to go through the different activities and parts of life and figure out why this is working and why my last roommate living together didn’t work, even though I have lived with people successfully and happily before.
The roommates that I lived with successfully
(1) understood the need for quiet/alone time, although we also would have the opportunity for parallel activities in the main room, like reading a book or watching tv together. An ability to be in the same room quietly is important.
(2) helped manage the effort of living together
Regarding point 1, my more recent roommate never bothered me when I was in my room. She was very respectful of that. If my door was closed, she would only knock if it was something relatively important. Or she would g-chat me. (An excellent way of initiating contact with me.) But I was never able to sit in the living room without conversation. I stopped eating at regular hours when I was stressed because I was too afraid to go to the kitchen during normal hours in case she would talk to me while I was there. And that’s just not a good thing to have happen at home. She was a very sweet girl, and we still are friends, actually (we were friends before, also), but living together just didn’t work out best for us.
Regarding the roommates I successfully lived with: we shared chores, so someone was always able to handle the something that needed to be done. But mostly it was making dinner together regularly. We didn’t always cook together, but we almost always (unless it was just eating leftovers) made enough for two. Often we cooked together, sometimes I made food, sometimes she made food. It added enough so that on bad days you could always find something to eat because chances were the other person was up to making food that day.
My last roommate didn’t cook at all. She mostly ate soup from cans. So that didn’t work. If she had, it is far more likely that I would still be living with her. If I had been able to share meals with her, I think the conversation would have been less of a barrier. But as it was, I was getting all the bad things about living with another person (a.k.a. there is always someone at your house) without any of the benefits I needed.
***As you can tell, food is very important to me. Both on a “I need food to survive and also get grumpy really quickly if I haven’t eaten” level and on a “I really enjoy eating and making delicious food” level. But I still have food struggles, mainly that when I get stressed I forget how to make the food or decide the food or eat the food. Also, when stressed, my foods-that-I-will-eat decreases dramatically.***
So it is ok for me that I moved out. Because being safe is ok. I don’t need to feel guilty about moving somewhere I feel safe. (I do feel guilty about it, but I know I don’t need to.) Because I feel safe at home here.**
Because now I can sit in my living room and work on things at my desk/table. I can work on my couch if it is something low-key like reading papers (which I have been doing so much of in these last few weeks of prelim-ing). I can go out of my room at any time of the day and it is ok. If I am sad or frustrated or mad, I don’t have to hide myself away if I start crying. (Which also means I can get things I left in the other room if I am upset.) Because the whole place is safe.
I can make myself dinner when I am hungry or at mealtimes, even when I am stressed. I can eat, even when I am stressed and tired. I can try to make new things, which I never ever ever could do in my old place unless I was sure my roommate wasn’t coming home. I can make snacks and baked goods. I can eat at the table, instead of in my room. I can take my time looking through the cabinets (although there isn’t much in them yet). I can cook things that require time spent in the kitchen, or time spent watching the pot, because I can stay in the room where they are, and it is safe.
I should feel safe where I live and I will feel safe where I live and I do feel safe where I live. (Except on windy nights when the broken screen on my window taps all night long but a maintenance request will fix that. And also that’s a different kind of safe.)
And the next person I live with will be boyfriend (who is now fiancé, who I really should give a proper name to) who makes me feel safer than any other person, except maybe my California family (but they have the benefit of added years of safety and familiar places on their side, while boyfriend can make me feel safe living 8 stories about the ground in the Midwest–I’ve never lived so far from the ground before.) Because I should feel safe where I live. And I will.
*AKA I get stressed spending any quantity of money because of some reason that I still struggle to articulate. I have never not had enough to meet my needs, so I am not sure where exactly this fear comes from. I think partially there is just something in the idea of spending money that I don’t understand. Where even though I know it translates into numbers, any values over $20 are bigger than I can really comprehend fully. So every few months I panic and get my accountant fiancé to explain all the numbers to me and check my finances and reassure me that I am financially safe.
**Even with the bad parts like going in elevators with other people and going through rotating circle doors daily, and scary things like those, I STILL feel safer here.
In high school, I had one best friend, L. We had all our classes together, except I took French and she took Spanish. We sat in the hallways studying together before school, we read books together at breaks and at lunch. When we hung out on weekends, we would hang out at her house (or sometimes at mine, but usually at hers). I had other friends, too, but I never hung out with them without L. It just wasn’t and interaction thing that I did.
On days that L. did not come to school (which was very rare, but happened a few times), I was completely lost. The times I knew she wasn’t going to be there (like college visits) were fine; I could plan ahead and bring books to read or work on math or read for class during breaks. I could find places to sit by myself instead of wandering to find her. When she was unexpectedly not there, I struggled. I would wander around and around, trying to find her. Even if it was after a class that I had that she was usually in, so I knew she wasn’t at school today, I still would look for her. I wouldn’t be sure what to do.
Then we graduated high school, and L. went to the Naval Academy, and then went to (is in) med school and got married (last week!). She’s always been bad at non-in-person-communication, so we see each other a few times a year, and I send lots of emails, but that’s all. It’s great to see her, but she isn’t the friend that I center my life around anymore, because our lives are so different.
In college, I had another friend. We actually were acquaintances in high school, in the small group of girls that took all the same AP classes. C and I both majored in the same thing. Almost all of the friends I met in college (with boyfriend being a notable exception), I met through her. Including two other girls that I became almost as close of friends with. They answered my questions and were in many of my classes with me. They were lab partners and fellow TAs. I always had one of them to rely on in pretty much any social situation I was in. They were the friends I went on the Disneyworld trip which was my first big traveling-without-adults-trip and were safe when I melted down in Walmart. C. was my friend with whom I travelled through Europe for 6 weeks.
C. is much better at internetting than L, so we do talk really frequently. There is pretty much a constant thread of communication going. (I talk to the other girls frequently, too, but not quite as much.) But she isn’t physically here, she is no longer participating in basically all my interactions ever. I don’t have the same person (and set of persons) in all parts of my life.
I have always had one (or a small group of) close friend(s) who I did everything with. Social and school. I’m lost right now, without my gateway friend. I don’t have one to be safe. For me to follow around as I get used to the new social environment. To have in all my classes (I don’t really have anymore classes). To eat with and sit with and talk with. To be my buffer from the world.
Boyfriend does a lot of this, when he is able to. But he lives a 40 minute drive away right now. He has his own work and isn’t really integrated into this social group. They are friendly with him, just like C. and co were friendly to him. But he is usually not here.
I have to remember a few things. That I have only been here a year, and it took me a year to meet L. It took me a year before I was really close friends with C. That it isn’t fair to rely on one person to be a buffer between me and the world, to help me feel safe and facilitate social interactions. I find grad school weird because it is a combination of school and a job, it seems, where you sort of still have your main social circle being other students, though.
But I miss having one close friend who shared every part or almost every part of my day-to-day life. I miss having someone safe who is reliably around at school and at social activities.
One of the best classes I ever took in undergrad was an introductory sign language class. I’m not really sure why I decided to take it, except it seemed interesting and fit into my schedule well. I liked the idea of being able to talk to But it has been so incredibly, unpredictably useful for me, in ways I didn’t expect it to be.
Today was a busy day, where I met a lot of important people in boyfriend’s life. We went and talked to a lot of people and talked and hung out.* And then boyfriend drove me home (I should really pick a name for him).
The moment I got in the car, I was exhausted.
Talking started to be very hard, when I was talking just fine before.
I was quiet.
Very, very tired.
Interesting point: I can hold off my tiredness and my not-talkiness for a certain amount of time. I do have some control over it, but then once I no longer have to, and get to a safe place, I can switch it off. Or at least the waiting and the talking and the being-around-people switches off.
Then he came in with me to check that I was ok because I wasn’t really talking.
Helped me change into my safe comfy clothes and find my blankets.
Be safe and make sure I have all the steps I needed to calm down and go to sleep.
And through all of this, I was tired and stressed. I could talk, maybe not well, maybe not in full sentences, but I definitely was capable of talking. But it was so much easier to not. Sometimes I lose all my words, but not this time. And because there was another way to communicate, I did. Being able to communicate without having to use my mouth is wonderful. Even when I can talk, sometimes it is incredibly hard. It is so much easier to sign yes or no or food or sleep. (I know very little signs, and certainly don’t ever use enough for grammar to even come into question, but the little I know has been helpful.)**
I think it is ok to not talk sometimes even if you are still able to talk at that time. I think it is important if you know that you sometimes have trouble talking (verbally) to have alternative modes of communication. I think that it is ok to use other methods of communication whenever, not just as a last resort. It’s ok to put my energy towards different sources rather than speaking. I think that it can be ok to choose not to talk.
I think it is important that other people are also ok with using alternative modes of communication. I wouldn’t do this with anyone but boyfriend (partially also because he’s one of the few people I have this system worked out with), but I wish it was more ok to use alternative methods of communication. I know that being able to get across what I want without having to use my voice was part of why I didn’t meltdown today after a long, busy, people-filled day. I think it needs to be safe and needs to be acceptable to choose other ways of talking.
*[He is smart, though, and knows me, so one of them we met over food, so there was food as an excuse for quiet. The other one, we met at their (parent’s) house. However, they had a dog. An adorable, friendly mini Australian Shepherd who is my friend now. So boyfriend and his friend spent a lot of time catching up, and I spent a lot of time hanging with my new friends. We were there for almost 5 hours, which is a long time to spend in a living room talking with someone I had not met before. The only reason I was able to do it for so long was because of the dog. (One more reason why I should have a dog.)]
**Boyfriend knows a smattering of ASL that he taught himself while working at a summer camp in order to talk to a few of the kids there. Neither of us are particularly fluent, but it works enough for us to get our point across. And really, usually when I am that tired, I am on single words, anyway.
A while ago, I ran away from home. True, I am an adult. An independently living adult. So you might not strictly call what I did running away. You could call it “taking a walk to clear my head.”
But it was really running away.
It was a panic, that resulted in a pretty much nonverbal me running out barefoot into the neighborhood. After about half an hour, I was able to talk myself into going back to my apartment for shoes, a coat, and my phone.
Shoes, coat, phone.
Shoes, coat, phone.
Shoes, coat, phone.
Then I was off again.
I know to walk if I am able to walk instead of run. I know the ways to walk so no one asks you questions or if you are lost or asks for directions. I know how to wander aimlessly while looking like I am walking purposely. Because walking purposely protects you from the people that would stop and ask you questions that I would be unable to answer. (Admittedly, now that I live in a city, I suppose I am less likely to run into random people I know, or just nice other people who ask if you are ok, but that was a threat in undergrad.)
I knew to walk east and north. Always walk east and north. (This is a purely safety reason, because the neighborhoods south or west are not as nice of neighborhoods.)
So I walked east and north, aimlessly but with purpose, to get away, to escape my mind.
Eventually, I had calmed down enough to sit down on some steps and send a help message.
“Ran away but went back for shoes and phone so ok walking campus now not safe (physically ok) but cant go back home again tried once help maybe”
And boyfriend called and talked me through, even when I wasn’t talking, and talked to me about little things about the week until I had words back and was able to walk back home past the motorcycle crash and the angry people and the police back to my apartment back to my room and be safe again. And he stayed and talked me through to safety.
And that is why I love him.
If he hadn’t called back, I’m sure I would have eventually calmed down enough to get my words back. I am not sure where I would have been able to go, or hide. I would have kept walking east and north, until I hit the lake. And kept walking. Not into the lake, but somewhere. Eventually the cold might have reminded me to go home, but I’ve walked for hours while it was snowing before because of similar panic. (I usually loop around a relatively small area, though. So I won’t walk one direction for hours, but I would walk the same paths around campus for hours in the snow.)
When things get to be completely overwhelming, I hide or run. Hiding usually comes first. If there is nowhere to hide, then I will run. I’ve been in a hallway before for a professor-networking-dinner-event, then the next thing I know I am literally halfway across campus, running. At a certain point, it becomes something out of my control. That is why it is good I spent my first adventures into living alone in undergrad on a campus without a lot of streets criss-crossing it.
I am afraid that one day I will panic and run out of lab in the middle of an experiment. Or run out of a meeting or run out of my (in the far indefinite future) thesis defense. Most of all, I am afraid I will run out into the street.
So I look for hiding places, for safe places, for places that I can go in a panic. Ways to hide instead of run. I’ve found several of them. There are quiet rooms full of rarely used equipment. There are the wells under the desk (although people could find me there, but it is a small space). There are always bathrooms.
I wish that I could say definitively that one day I will grow out of the running. That I will be able to just stop it. That I will be able to manage things so that they are in control and so that it never happens. I’m afraid one day I might be watching my (potential far-distant) children and get so overwhelmed I run away, leaving them who knows where. I don’t think I will. I tend to prefer to hide, if at all possible. I want to be able to manage myself better, to know when I am close to overwhelming, to know when I can push myself and when I need to stop. I think I’m generally getting better. But these full-out-panic-don’t-remember-runnings didn’t happen all that frequently to begin with. (Possibly because usually I can hide.)
boyfriend and I went back to our college
we walked around the lake
and I was distracted and happy
dashing around at daffodils and ducks
and the small purple flowers
and hidden spiderwebs
and stopped at our spot
the spot where we would go to sit out and watch the stars
the spot where we had our first kiss
the spot where he told me I was beautiful for the first time
(the first time anyone not-my-parents had ever told me that)
and we stopped and looked at the lake
and the ducks and the flowers
and then he got down on one knee
and asked me to marry him
And of course I said yes. And now it is the spot where we got engaged. Where we officially are going to tell people and start planning forevers. It’s full of overwhelming happiness, of bounces and bubbly feelings and everything amazing.
This weekend I learned that it is not only despair that makes me lose my words. Overwhelming happiness can also do it. But I don’t need words to express my happiness. There’s happy-flappy, jumping, spinning. There’s happiness everywhere. For maybe 10 minutes, I jumped up and down and flapped and hugged and spun. We couldn’t put the ring on for the longest time because it would have flown right off my flapping hands. There’s been days and days of “we’re getting married” scripting and he always responds back with the right words.
And now I can spend forever with the one person who always is safe. Who watched me flap and spin happily all day and smiled. Who talked to people for me when I was too happy for words. Who makes the world make sense. Who never stops watching out for me and making sure that I am alright. Who scheduled quiet breaks into the day so that I wouldn’t get overwhelmed. Who made sure when I got home that I slept and ate. Who drove home while I slept the whole drive because even overwhelming happy is exhausting. Who planned everything so amazingly wonderful. Who picked out a beautiful ring that I can wear underneath my gloves at work. With nothing poky, but with plenty of sparkly.
So right now my life is full of overwhelming happy.
So for Thanksgiving, I went to Thanksgiving-holiday-celebrations with boyfriend’s family. And while it was fun, it was also overwhelming and completely drained and melted me down for much much longer than it should have been.
But, like I said before, boyfriend is important to me and his family is important to me. And they are physically close which is convenient for holidays (especially ones like Easter where I have to work the next day now that I am not at a Catholic school for the first time in my life). And I like them.
So I was glad when I was invited to Easter. And I was going to be prepared. I would handle the sound and take breaks and manage my overload-meltdown-awareness and everything would work out. And guess what? It actually did! There were mistakes and wrong turns and noises and surprises and I survived and enjoyed it.
I was going to bring some sort of dessert, because I like baking and I was thoroughly trained to bring something whenever you visit. After musing over ideas for a while, I decided on carrot cake. But carrot cake was a no-go, when discussed with boyfriend. Apparently a large portion of his family is opposed to it. After some more thought, I remembered this beautiful Christmas dessert I made.
So I ended up with some very burnt cream puffs, from the first batch. (Like extremely burnt. Like they looked like charcoal briquettes. And sort of tasted like them, when I tried one in the vague hope that they had merely decided to darken without altering the flavor, or at least not in a way strong enough that I couldn’t hide it with chocolate. Alas, it was not to be.) And the second batch, which I took out in time, were not very puffy. So I didn’t bother making the cream, because it was only going to be for a few cream puffs, and that would be no good at all. Not enough dessert. Also, these cream puff adventures set the fire alarm off, and the windows in my apartment are very difficult to open (my roommate and I have to open them at the same time, because they either are very difficult to open or we are both very weak. It is probably a combination of both.)
The actual Easter dinner/family part
The drive home
The take-home message
I like things to stay the same.
I want someone to direct my life again. It was so nice when I was home and I did not have to decide the structure of my life. When food was just automatically produced at the times to eat. Time to sleep and time to wake up was generally predicted. Activities were planned.
I want to cling to things that are the same.
I don’t want to be a new real adult person.
I have no idea how I am going to get through the self-structured-self-ordered grad school life for the next undetermined-amount-of-time-that-is-probably-between-five-and-seven-years.
I want structure.
I want order.
Emotions are hard. I don’t understand them. I can’t figure them out. There are very very very few of them that I can recognize in myself. I have written about this before, and it is something I still have so many struggles with. Alexithymia. It is one of the things I hate most about the way my brain works.
It would be so much easier sometimes to figure out how to fix things if I knew what was wrong.
For instance, right now.
I know something is wrong. My stomach hurts, but not in a throwing-up/sick sort of way. More in a tied-up-in-knots way. My brain is jumbled and going every which way. I have been lying on the floor for the past… hmmm well, it has actually been over 4 hours. But I have been watching Scrubs, so it hasn’t been all useless. [Lying on the floor, admittedly, in itself isn’t necessarily a bad sign. My family lies on the ground all the time (partially because we never had enough chairs in our family room growing up, so usually at least one person has to sit or lie on the floor.] I haven’t cried, and I don’t think I want to cry.
I don’t know what this is.
I don’t understand how people can just know that they are nervous or jealous or embarrassed or tired. I’ve tried asking people. No one can explain it satisfactorily. They just “know” that that is what nervousness “feels” like. It is extremely unhelpful.
I want to know what I feel like right now. I want a name for the specific emotions. Because when you can give things names, then it is so, so much easier to start addressing them. I want to be able to categorize and classify my emotions. Because identification and classification are the first step to fixing something.
I want to be able to answer boyfriend when he asks me how I feel with more than a “good” or a “bad” or a “not sure”.
I don’t understand how this works for other people. I know the temporary solution. It’s on my giant flow chart in my closet. I haven’t eaten recently (because it is 2:19 currently and I ate dinner several hours ago). I need to eat. And it is after midnight. I need to go to sleep. But those are both temporary solutions to a feeling that I have had since before dinner, before midnight. Admittedly, the temporary solution is what I need now, because it is attainable. But I want a fix. I want this to be fixed. I want there to be a way that I can understand emotions that are happening to me and name them, because that seems like a basic self-aware thing to be able to do.
I don’t have words for them. And I know there are words that exist for them. I even know what the words are. But I have absolutely no idea how to map them on to the actual experiences that happen or the actual sensations that I assume are emotions.