The Hospital Series: Part 1

If you read my last post, you know I was going down fast. Here’s the thing about bipolar depression – it gets bad very quickly. On October 22nd, at 9 in the morning, I saw my psychiatrist and she admitted me to the hospital.

There were no beds available yet, though, so I curled up in the fetal position in the corner of an empty office to wait for them to find a place for me. Finally at 3 in the afternoon I was escorted to the hospital and admitted to the psychiatric ward.

There’s something that always happens to me when I get admitted – for the first little while, there is just RELIEF that people are watching me and keeping me safe from the things I could do to myself. I remember friends visiting my first night, and I almost felt normal, like we were hanging out. Not like someone who had been composing music for his own funeral the night before.

But then, the relief passed, I realized that I still felt like my body was filled with lead, and I pretty much didn’t get out of bed for a couple of days. I really have trouble remembering some of this hospitalization, because I was SO depressed.

I’m going to talk about the hospital in short snippets, because it’s too much all at once.

Some Psych Hospital Survival Tips:
Stockpile towels. The nurses are always busy when you want to take a shower.
Don’t eat the chicken pot pie.
I will talk about Asperger’s sensitivities and psych hospitals later, but BRING EARPLUGS.
Sweatpants are a better choice then jeans because they might take away your belt and then your jeans will fall down.
You will have days where you feel great and can exercise, go to groups, do laundry, socialize…and then you will have days where you stay in bed all day.

I’m still in the hospital, but have gotten to the point where I can come home for a few hours. More blog posts are forthcoming, hopefully better ones… my brain is still too fried to be prolific.

Dante

Dante Alighieri wrote an epic poem called Divine Comedy. The first part of it is probably most well known, and that is Inferno. The short version is:

Dante ends up lost in a wood, and despairs that he cannot find the way to salvation. Conscious that he is ruining himself and that he is falling into a “deep place” (basso loco) where the sun is silent (l sol tace), Dante is at last rescued by the Roman poet Virgil, and they begin their journey through Hell.

The inscription on the gates of hell is “Abandon Hope, all Ye Who Enter Here”.

Dante and his guide Virgil travel through all of the circles of Hell, each set aside for a particular sin, and each sinner being punished and tortured in a specific way.

At the centre of Hell, Satan is imprisoned in ice, weeping and trying to escape, but his escape attempts trap him further. Dante and Virgil escape through the centre of Hell by climbing down Satan’s fur and pushing through to the other side of the earth. Dante feels the change in gravity and is afraid they are going back to hell, but they emerge on the other side just as the dawn is coming.

I’ve documented my manic episode. Now, this is my inferno. Now it’s my turn to journey through hell. At the beginning of the week I could tell I was “falling into a deep place where the sun was silent”. Imagine that. Imagine a hole so deep you couldn’t see the sun. How trapped would you feel? How claustrophobic? How long could you hold on to hope?

And since then, I’ve been descending through hell. At first, my concentration started going bad. Well, it never really recovered from the manic episode. Then, my motivation started lagging. It started to feel extremely difficult to just get out of bed, to go to class. Unless you’ve felt bipolar depression, you will not understand how futile it feels when someone tells you to just go to class, when you know that you have very precious little energy and if you expend it on class, what’s going to keep the dark thoughts at bay during the night when you’re not in class?

I am constantly tired. I have trouble sleeping at night, I keep waking up, I stare at the wall. Because of this, I spend a lot of time during the day in bed, staring at the wall, or the ceiling.

My thoughts are slower, it takes me longer to think of the words I mean. It makes me feel dumb. I don’t understand things, no matter how many times you explain them.

There is a pervasive sense of agony. You know those old commercials, “depression hurts”? YES IT DOES. My body shakes and my throat clenches and I can’t eat and my chest aches and I can’t breathe and I can’t cry.

And I constantly, constantly, just want to lay down and give up.

No, not “call the ambulance” give up. I’m committed to something on Sunday which is enough to pull me through. I see my doctor on Monday and she will likely hospitalize me then. I will lay down, give up, let the professionals take over, and get through this.

It will end.

It will end.

I feel like it won’t, but

It will end.

And thank you to my guide “Virgil”.

World Mental Health Day

Today is World Mental Health Day. I don’t know the stats for every country, but here in Canada, 1 in 5 people will experience a mental health disorder in their lifetime. So for two reasons, I am going to expand the scope of this blog.

The first is because mental health advocacy is important. A lot of people have misconceptions about or don’t understand mental illness. This misunderstanding leads to hurt. Families are hurt. Sufferers are hurt.

The second is because I just went through something profound, and god damnit I need to talk about it.

In addition to having Asperger’s Syndrome, I also have bipolar disorder. I was diagnosed when I was 24, in 2008. A manic episode led to a hospitalization, which led to eventual depression. While I was hospitalized, quite a few doctors consulted and the consensus was Bipolar I. There are two types of bipolar diagnoses, I and II. II is more mild, and usually doesn’t include manic episodes, only hypomanic ones. Hypomanic means sub-manic. In the extremes of Bipolar I, the diagnosis can also include psychotic symptoms such as delusions and hallucinations. I am one of those statistics.

I was diagnosed when I was 24. I’m 28 now. That’s 4 years of learning to deal. I’ve gone from being a hospital patient to actually functioning at university. And for the last 2 years, I’ve been completely stable. Not a single episode of mania or depression. Until the beginning of October.

There is usually a build up to a manic episode. There were signs I missed. I started exploding with poetry. I got a tattoo, which was a little impulsive. I was confident and happy but happy is ok and happy is good so it’s hard to miss the line where happy turns into HAPPY!!! and all of the sudden you’re superman.

So things really started slipping on Sunday the 30th of September. I barely slept that night. As Monday wore on, my energy levels kept climbing. I still wasn’t sleeping. I started writing lots of music. At first, it was good music. I took a string quartet assignment that we were basically assumed to add a second violin part to and choose which part to double, but instead I rewrote the entire thing and added running eighth notes everywhere to sound like rain falling. I actually thought I could do better than Handel. Like I said, at first, it was good music. I just got that assignment back and got 100%.

The energy levels of someone in a manic episode are insane. I wasn’t sleeping, but I felt like I could run a marathon or two. I am usually pretty shy but suddenly I was talking to everyone. EVERYONE, whether I knew them or not. I was talking fast. I was intense. My attention span eventually dwindled until I couldn’t spend more than 5 minutes on something.

The only thing I COULD focus on was a string quartet I had started writing. I had based it on the interval of the perfect fifth, and I was convinced that there was some secret in that interval and if I figured it out I could write a piece that would revolutionize music as we know it. This string quartet kept getting more and more complex. I need to bring the sheet music to my prof so we can make sure a human being could still play it.

So I wasn’t sleeping, I was barely eating, I was talkative, I was writing music, I was obsessing over intervals. That idea that I needed to figure out the secret of the perfect fifth? That happens in mania. It’s a delusion of grandeur. But it got worse.

Eventually by Friday, I knew I was approaching that line. Bipolar people will understand the line, the line where on one side you know you’re acting abnormally and probably need help, and on the other side you’re blindly unaware that you’re totally insane. But I’m in Canada and it was Thanksgiving weekend, so I couldn’t see my psychiatrist. Instead, I decided to see if the hospital could give me something to help me keep a lid on it until I could see my psychiatrist. By this point, the mania had ramped up so much that I COULD NOT SIT DOWN. I waited for the bus while pacing, waited in the hospital waiting room while pacing (after telling the admitting person EVERY THOUGHT IN MY HEAD EVER), and eventually whipped out some manuscript paper so I could keep working on the perfect fifth secret. I’ve read over all the music I wrote on Friday night, and it is unintelligible. My brain was churning out insanely fast thoughts, and they just didn’t make sense. And the delusion was deepening. After seeing all of the sick and hurting people in the hospital, I was ABSOLUTELY SURE that I needed to figure out the fifth secret so I could heal everyone’s pain. I personally felt their pain and felt even more driven to figure out the secret so I could help them.

Eventually a psychiatrist saw me and within 5 minutes told me I was manic. I explained about the fifth thing to him and he said it was part of the mania. He made sure I was going to see my psychiatrist ASAP and prescribed me something until then.

And today is the first day I’ve really felt normal again. Normal is subjective, and it’s pretty hard to define, especially when you’ve been manic for more than a week. I still have trouble concentrating, I’m still a little distractable, but I don’t feel like I’m going to explode. I also don’t feel like I’ve been personally chosen to save the world.

But why am I going so public with this story? I know that some people who know me personally read this blog. I think I’m doing it because people need to realize that EVERYONE has a secret story. I am lucky that the worst of this happened during Thanksgiving weekend and I was largely alone and there were not very many people around to alienate, but during the week before, when things were ramping up, nobody even knew that this was something more than just me being hyper.

EVERYONE has a secret story. There are so many things, especially when it comes to mental health, that people don’t want to talk about. If you’ve read all of this and want to write me off as a crazy person, go ahead. But I bet that if you know me, you’d never have guessed I have this story to tell.

Please, PLEASE, don’t be afraid when it comes to mental health. Talk to someone. Talk to everyone. Get these issues out of the dark so that people don’t have to suffer in silence any more. I am not afraid.

On Eye Contact

Some people get offended when you don’t make eye contact with them. I was at a store today buying ear plugs (sound sensitivity blog post coming soon) and didn’t make eye contact with the cashier. I may not pick up on body language and non verbal cues instinctively, but I’ve been alive long enough and accumulated enough experience to surmise that when a person’s mouth forms a certain shape and their voice sounds a certain note or range of notes, that might mean you have offended them.

So here is a blog post devoted to eye contact. I can’t speak for every autistic person. The saying goes, if you’ve met one person with autism, you’ve met one person with autism. The spectrum encompasses a wide variety of presentations.

But for me, a lot of my world is turned up and seems very intense. Something that a lot of autistic people experience are sensory sensitivities. These differ among each individual person. Some are very sensitive to the flicker that florescent lights emit. Some are sensitive to the buzzing or humming noise lights can make. Some are sensitive to touch and can’t stand the feeling of shirt tags or sock seams. Some can’t stand certain noises.

The important thing to keep in mind, something that even professionals tend to mistake, is that it doesn’t mean EVERY autistic person is going to have EVERY sensitivity. Some autistic people are even HYPOsensitive (undersensitive), for example, hyposensitive to pain.

I will go more into my specific sensitivities in the next blog post, but imagine that parts of your world were ramped up. Imagine that everything looked super vivid or bright and it exhausted you to look at it for long. Or you picked up every little sound and it was impossible to concentrate because you heard EVERYTHING.

And then imagine dealing with people. People are loud, confusing creatures. At least for me, I am usually struggling to keep up. Maybe I can’t focus on the conversation because too many other sounds are happening nearby. Maybe I don’t understand the other person correctly because I’m not reading the body language, and am hurrying in my thoughts to try and decode what they’re saying into something that makes sense to me. Maybe I’m in a group of people and am fighting against shutting down because there is just too much going on.

And they expect me to add eye contact? I actually don’t know how it feels for you, but for me, looking into another person’s eyes and having them look back into mine feels like I am touching a hot stove. I am being burned. It’s like an extra jolt of overwhelming input – I already described how sensory sensitivities can be overwhelming. When there is a lot going on, SOMETHING has to give.

And that’s why sometimes I can make more eye contact and sometimes I can make less eye contact. Sometimes the other input is less, and I can briefly endure the jolt. I do it to show you I can speak your language for short periods of time. If I need to underline something with body language, and the other demands on my senses aren’t too intense, I’ll look you in the eye. There’s another myth – it’s not true that ALL autistic people NEVER make eye contact.

But a lot of time that you think I’m looking you in the eye, I’m probably looking at your nose, or your mouth. I watch mouths a lot. I’ve lived a lot of years and went through enough childhood experiences with adults yelling at me to “Look at me when I’m talking to you” that eventually I learned to pacify, if not actually comply. I do it to make you happy.

What would make me happy? People clearly spelling out their intentions. People  who don’t judge if I need to turn the noise down a little. People who don’t get offended if I can’t figure out how to reciprocate appropriately. The biggest barrier for me to making close friends is that I don’t know how to appropriately reciprocate a friendship. There needs to be a book for that.

It would be nice if there was some more understanding out there.

What Isolation Means to Me

I am going to repeat something that I mentioned a couple of entries ago: Autistic people get lonely. You might think the way to deal with that loneliness is simple – go be with people. But for someone with autism, it’s a little more complicated than that.

If there is one thing I’m obsessed with and will gladly absorb myself in for weeks and weeks on end, it’s musical theatre. I just finished a run of a play (the run is what they call the time the play is on stage) where I was acting. I was socially successful in this group of people, largely because theatre is what gets me engaged. When I’m immersed in my interest, that is when I’m truly engaged with the world. Most autistic people have an interest or two like this.

But I’m not always that socially successful. Just today I went out for lunch with a group of people with autism, and the restaurant was very crowded and very loud. I barely spoke a word. I couldn’t formulate thoughts. I couldn’t contribute to the conversation. I wasn’t even AWARE of the conversation most of the time, I was too busy trying to calm myself down and stay in my seat.

The functioning level of people with autism can fluctuate. People who see me during a theatre show have seen the REAL, engaged me. But when something causes me to disengage, be it noise, or light, or overwhelming emotion that I can’t even name, I’m not nearly so functional. And sometimes the amount of extraneous input that causes me to disconnect can be small, sometimes I can tolerate much larger amounts.

I mentioned that I just finished the run  of a play. This means, all of my social connectedness and the things that make me engage with the world have ended. So I’ve been feeling sad. I’ve been feeling lonely. I’ve been feeling isolated. I still engage with the world. I go to the practice rooms at my university and sing, and get ready for the next theatre experience, for the next audition. The next chance I’ll have to feel those social wires connect. But I don’t really engage with people very much.

So I guess what I know is, it’s hard for me to connect with people. I don’t even know how to keep a conversation with non theatre people going, never mind make friends with them. So my cure for isolation is to immerse myself in my interest and the people will follow?

I hope so. Because the solution to loneliness for an autistic person is not as simple as just going to be with people. You have to go be with accepting people. I was successful in the cast of the play because they KNEW I had Asperger’s, and even if they didn’t know exactly what that meant, they didn’t discriminate when I asked them not to whistle, or when I needed to turn the music down, or when the audience was too loud and I had to plug my ears backstage. They didn’t care if I didn’t understand pop culture references unless they related to Broadway, or that I turned several conversations into conversations about musical theatre.

So of course it’s a culture shock when the show ends and all of the sudden you barely see those people any more. For someone who has trouble making friends, it makes the isolation so much harder.

Temple Grandin is a big advocate of letting autistic people thrive by building a life from their strong interests. I support this idea. Because the place I thrive is in the theatre. I saw that clearly this summer.

Sometimes I forget

I know this is mainly an autism blog, but this might be relateable to a wider audience: Do you ever forget that you’re absolutely awesome?

Come on, you know everyone is. Everyone has a battle, everyone has a story, everyone has been cut down or forgotten. And because you’re still here, you’re awesome.

Because I’m still here, I’m awesome.

I struggle with my identity. I struggle with my confidence. I struggle with liking myself. Do you? I thought I was over it. I made a transition and was finally living as me, the true me, without hiding anything. And I was being accepted. And more importantly, I accepted myself. I loved myself. And I loved letting other people get to know me – the real me, no holds barred.

And then something happened that shook me. It took my confidence, it returned me to that victim place that my younger self was all too familiar with.

And for a brief moment I disliked myself again. I shut down.

But the title of this post is “Sometimes I forget”. Sometimes I forget:

I forget that the way some people have treated me does not have to define who I really am.

I forget that I am strong.

I forget how far I’ve come.

Please, anyone out there who has been victimized, which happens all too often to not only autistic people, but the general public as well – don’t forget.

Don’t forget who you were before you were struck down.

Don’t forget that you are shining and beautiful the way you are.

And somewhere, you will find people who see that in you and bring it out.

Sometimes I forget.

But tonight, I remembered.

I socialize differently, not wrong.

The way I socialize is different, but it’s not wrong.

The most comfortable way for me to fill my social needs (and yes, autistic people have social needs) is to absorb conversation. That means, to sit in a group of people who are socializing and just observe and drift among the conversations. This means I may not verbally enter the conversation myself. This means I may not even look at you. But I hear everything.

Non-autistic people see me do this and think I am not paying attention. They think I don’t want to be there. I hear frequently, “What’s wrong?” or, “Aren’t you having fun?” or “You look sad.”

Nothing is wrong. Yes, I am enjoying myself. No, I’m not sad.

And that’s only what people who know me say. People who I’m trying to make friends with see the way I usually interact and assume I’m stuck up, or uninterested, or maybe that I just don’t like them.

Can you see how it could be very difficult for me to make friends? I can’t wear a huge flashing sign everywhere that says “I am interested in what you have to say, but I probably won’t ask you questions. Please keep talking.”

I don’t stay silent because I don’t like you. I stay silent because it takes me a little bit longer to process what you’re saying and filter the meaning. What’s funny and against stereotype is that meaningless small talk is actually pretty easy for me. It’s just memorized scripts. No one really cares what the answers are.

Just once I would like to answer someone’s “how are you?” with “Well, when I left my house this morning I ran into a 6 foot tall pink bird that tried to take me to its nest and I had to battle my way out of there with the karate skills I learned when I was 10. So I’m kind of tired today, thanks for asking.” See if they notice that!

But I digress.

Once you get past “how are you” people usually move into something similarly shallow, but not nearly as interesting to me, like sports, or fashion, or celebrities. I guess this is the place where I genuinely am not interested. But the majority of people I hang around or try to get to know have conversations about their lives, or their experiences, or their aspirations, or one of our mutual interests, like musical theatre or Broadway or more broad topics like my university.

I like hearing about this. But I will likely be looking away and possibly I won’t even contribute to the conversation if there is more than just the two of us. You might think I want to leave. People usually do. But it’s the opposite. I am appearing to tune out because I need to tune out of all this input in order to really HEAR what you’re saying and understand it.

You think the only thing to hear is your voice. But there’s the crowd of teenagers on the other side of the dining room and the ringing of the cash registers and the buzzing of the florescent lights. You might be able to tune this out without really thinking about it, but I can’t.

You think the only thing to see is your face. But you don’t understand that there is so much input and nuance in your face that in order for me to concentrate on your words I can’t look at you.

So that’s how I have a conversation. People think I’m quiet. I guess that’s true. But uninterested? Unengaged? Not true.

I just don’t quite do it the way you do.