My first break

The more I learn about the nature of mental illness and the many different shapes the same disease takes the more I realize I’ve been waltzing with depression longer than I ever knew. The very fact that I was never particularly surprised when different conditions showed themselves is very telling.

I’ve worn glasses everyday of my life since I was ten. I cannot survive without them. I’ve never lost or broken a pair for two simple reasons. 1: I can’t function without them. I cannot read, see a television screen, or walk without risking injury. 2: I have never had enough money to replace a pair should some thing happen to them. Insurance pays their part only once a year. My astigmatism has only become worse with time and my lenses are ridiculously expensive.

Children are highly adaptable. My glasses were has much a part of my life as my eyes and so I protected them just the same. There were never arguments to put them on. My parents never had to question where my glasses were or search them out. If I wanted to read I had to have my glasses. And I want to read more than my next breath.

So when depression sat itself down in my life with all due authority, I accepted it as easily as I would accept my glasses a few years later. For a long time I thought depression had manifested in my early teens. But the depression of my early teen years was just the same monster, wearing a new face.

My first major depressive episode began when I was six. It lasted roughly three years. OCD showed up at the same time. The event that triggered it began with my cousin Jonathan. I was five when he was born. He was the first child of my father’s only sibling. At the time Jonathan was born my Uncle D and Aunt L lived with my paternal Grandmother. If we weren’t in school my siblings and I were at our Grandmother’s.

I don’t remember anything leading up to Jonathan’s birth. He was there one day and that was fine. But then he wasn’t there anymore. He was there when my dad took us home in the evening. The next day, after school had ended, Jonathan was not there. The house was full of lit religious candles and silence. My Grandmother whispered to herself in Spanish, black beaded rosary clenched in her fist. The banner welcoming Jonathan home was gone.

I asked my Great Aunt one quiet question “What happened?”

“Baby Jonathon has gone to Heaven with Jesus.”

Another question “Why?”

“Voluntad de Dios,” she whispered. “Shush.”

Aunt L disappeared too and I have never seen her again. My mother and my Great Aunt sternly told me to be quiet and not ask questions. So I mirrored my older sister’s behavior and things gradually went back to normal. My Uncle moved into his own place and bought a giant black Harley that terrified me.

I was nearing the end of my kindergarten year when one morning sitting in class a thought arched across my mind like lightening. ‘Baby Jonathan!’ He was born and died in early fall. It was nearing summer. I accepted his death the way children sometimes do, easily and without much distress.

“God’s will,” my Aunty had told me. I never questioned her assertion because her belief was absolute. It was honest and fair. Good or bad it was all God’s will and that sat with me quite nicely. To this day I don’t know why his name suddenly came to me but it opened a door in my mind that led to a deep, unknown place.

No one ever said his name. There were no pictures. His mother was gone. His things were gone. He’d had a crib. Gone. A blanket. Gone. Toys. Gone. A name. Nearly gone.

His face. His face! His face? His face was gone, gone, gone.

The more I tried to remember the greater the darkness grew. My Uncle never laughed when he came over anymore. He rode that giant Harley beast without a helmet. He smoked in my Grandmother’s house. He didn’t look at us kids anymore.

I squinted, I held my breath, I pressed on my eyes until they hurt. His face would not come to me. Baby Jonathan had been erased. He’d gone up to Heaven; voluntad de Dios. But it was my family that erased him. His things were gone, his mother gone, and no one spoke his name. Not even a year had passed and he was utterly, completely erased. Not by God’s will but by the will of his own family!

But I had a hope. His birthday. We would celebrate his birthday! Christ had died and gone to Heaven and we celebrated His birthday every single year. Why would Baby Jonathan be different? School ended and started again. First grade and I couldn’t remember Jonathan’s birthday but I knew my Grandmother did. It was before my birthday. But my birthday and Jesus’ birthday passed. A birthday banner for both of us. Cake too. But no mention of Baby Jonathan.

I went into that room that had opened in my mind. It had been dark and empty before. Now it was occupied. A table, two chairs, and it of course. The Pale Rider seated at the table. Its pale horse waited quietly nearby. It was a plague in the Bible. I often went to that dim room and sat with the Pale Rider. I would scream and rage and demand it give me back my cousin’s face. My family had given it to the Pale Rider but I was Jonathan’s family too. I should be able to take it back. He belonged to us! I wouldn’t allow him to be erased. But the Pale Rider never spoke. It would smile sometimes and that’s when the darkness was the worst.

My cousin died of SIDS. He lived for less than a week. He was buried in our mutual hometown. His things were taken away by family friends. Some were blessed and given away. Most were destroyed. My Uncle D and Aunt L divorced quietly. I stared seeing the school counselor after Christmas break. The school had been put on alert of course. The counselor was a kind woman but she didn’t recognize what was happening to me. I doubt many would. I was a six year old in the midst of a major depressive episode with psychotic features brought on not by my cousin’s death but his erasure.

I was utterly convinced that if I looked in the correct book Jonathan’s pictures would be there. How to find that book was given in coded messages in other books. Certain sentences would stick in my mind and these would become the clues I needed to decode and then follow. Certain numbers were special. Certain names important. I fixated. I ruminated. I watched for important signs. I sat at that table with the Pale Rider. I learned to be mentally still. I learned how to keep the Pale Rider from smiling. One day, I left that room and closed the door. I didn’t go back in there for many years. I don’t know how or why that depressive episode ended.

God’s will, I suppose.

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Where Do We Go From Here?

When I encounter new doctors (medical, mental health, etc.) the first question I’m asked after the disclosure of my mental health history is “What is the date of your last hospitalization for mental illness?” I have never been hospitalized due to my various mental illness. Every health care worker I have told this too has the same response. They pause, look up from my chart, and say something along the lines of “Really? Lucky you.”

I guess it is lucky that I’ve never been hospitalized for mental reasons but that’s a really low bar for “lucky”. I know a lot of people are less fortunate than me and I am lucky in that regard. But it isn’t as if my mental health doesn’t have deep consequences for my daily life. I’m 32 years old. Its been two years since I held a job. The longest I ever held a job was four years when I worked on campus while in college. My college was very small and very sheltering. Had I gone to a larger school in a larger town I doubt very highly that I would have graduated. There are many barriers in my life that keep me from holding a regular job but the biggest one is my ability to be at my job on a regular basis.

Some mornings I wake up and can’t get out of bed because I hate myself so much I start to contemplate suicide. Some mornings I’ve woken up so scared of some ominous threat that my brain convinces me is real I cannot leave my house. Sometimes I’m so overwhelmed with various sensory challenges that I can’t process what I’m seeing, can’t understand what I’m hearing, and/or cannot speak. How can anyone be expected to stand behind a register and smile for eight hours when their brain is bombarding them with the idea that they would be better off dead? How can I stock clothing in a store when that seemingly simple task is a game of sensory Russian roulette? How do you even explain that to someone?

“I cannot touch denim because of my autism.”

Well that’s a basic function of the job and not exactly covered by FMLA or other laws. Even diseases like asthma that are covered by FMLA aren’t always covered by FMLA. There are days I literally cannot go outside because it will inhibit my ability to breath. Walking from my house to my car or my car to my job could in fact kill me. These days are not all that common but if the city declares an air quality alert day I cannot go outside. The state is telling people who are sensitive to avoid going outside and that’s me. Its not because I want to be because if there were a magic pill to just make asthma go away I’d do whatever it took to get one. Being able to drown on dry land isn’t exactly a super power. If the pollen and mold counts are too high my asthma shuts off breathing and makes my nose bleed copiously. Imagine having someone ringing up your groceries who is gasping like a fish and actively bleeding. You wouldn’t want that person near your food. Your job would send you home. But you are penalized for it. I once had to call out from work because I was so convinced that the overpass would fall out from under me when I was driving that I had to take so much anti-anxiety medication I wasn’t safe to be behind the wheel of the car.

I have atypical depression that is very resistant to treatment and even when a treatment is working there will be days that it doesn’t. I have generalized anxiety disorder, panic disorder, and obsessive compulsive disorder with chronic intrusive thoughts. I have IBS and at any point my guts will rebel against me. I may be on the toilet for 30 minutes with a 15 minute break between extreme bouts of intestinal cramping and diarrhea. Anyone with IBS-D knows there isn’t any treatment that works. When an attack starts I am simply along for the ride. At the end of this ride is exhaustion, pain, and dehydration. I have asthma. I suffer from unpredictable insomnia. I go to bed at a reasonable hour but I’m still awake at four AM. If I have to leave for a shift at 6am that’s barely two hours of sleep if I even manage to fall asleep. If not I’m going to be working in a complete daze because I cannot function without at least 5 hours of sleep every night. If I get less sleep than that it often triggers my IBS for reasons no one understands. I suffer from chronic headaches that don’t respond to treatment very well. They aren’t traditional migraines but its hard to function when your head feels likes its gone rotten and is ready to split open. I have chronic pain in my joints, particularly in my knees. The medication that helps with the pain renders me unable to operate heavy machinery or even stand without wobbling. I basically act as if I’m drunk and you can’t do that on the job for very long even when the medication you’re taking is legally prescribed to you. I suffer from chronic fatigue. My doctor is currently trying to figure out if I have an autoimmune disorder. So there’s days off for various doctor’s appointments in addition to my appointments with my mental health care team that literally take all day long. And then there’s always my autism which makes dealing with the public very difficult. Retail shops are such sensory nightmares that I can’t even do my own shopping. How can I possibly work in such a place for up to eight hours a day?

So, this is where I’m at. My car broke down completely in December of last year but I’ve been out of work for two years so there’s no money to even buy a junker. I have so many barriers that “normal” employment seems impossible. I would love to go back to school at get a degree in Library Science so I could be a librarian but I need money for school and then I’d have to be able to be at work and not calling out all the time. I’m 32 years old and looking at getting disability benefits because I cannot function normally in society. But I have an above average IQ so even workshops that exist to give people with disabilities a place to work are not an option for me. No oneunderstands what an adult with autism needs or how to help them gain employment.

There is a void ahead of me in which I am simply incapable of existing in “normal” society and living a “normal” life with a “normal” job. Or even any job at all.

So where do we go from here?

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*screenshot taken from the manga “3-gatsu no Lion”. I claim no ownership.

Second Chances

I believe very much that most people deserve a second chance at things. But for the most part it never happens cause that’s just not the way the world rolls. But something very interesting is happening tomorrow and it really began many, many years ago.

Over fifteen years ago (gah!) two friends showed up on my front porch. It must have been a weekend because it was the middle of the day when we normally would have been in school. I remember them both, C and H, on my porch, a car with more of my friends waiting at the curb. We had tickets to go see a movie and we were all really, really excited. I was excited to but overwhelming my excitement was a great, welling fear. The fear that if I left my house something terrible would happen to the ones I was leaving behind. My mom and younger siblings would be dead when I arrived home after the movie and if I had just stayed home it wouldn’t have happened!

It was my senior year in high school. My OCD, something I’d lived all my life, was out of control. Two new things had cropped up suddenly. I didn’t know their names then but I do now: panic disorder and agoraphobia.

My friend H had called about fifteen minutes ago, letting me know they were on their way. I had hung up, my fake cheerful smile stricken from my face,  and I ran to the bathroom and vomited copiously into the toilet. I hung there, hands on my knees, half sobbing. Snot was dangling from my nose, tears streaming from my open but unseeing eyes. I was covered in sweat, could feel it streaming down my back in that hot, unventilated bathroom but I was shaking from a cold that seemed to seep outward from my blood. My bones felt like water and then suddenly like shards of glass. My heart was beating so fast it felt as if it were going to tear itself apart. My chest suddenly felt too small for my lungs. My inhaled breaths felt swampy and fetid, not giving me the oxygen I was gasping for. I threw up twice more in quick succession, flushing when my stomach was finally empty. In that bathroom with the toilet that often clogged, faded linoleum tan on the floor, wallpaper a pale beige with flowers. I took my glasses off, folding and carefully placing them in my pocket, and washed my face with hot water over and over until the tears stopped. I could breath now and took a few quick breaths through my nose. I dried my face with an old  scratchy blue washcloth that I hated. Then I carefully replaced my glasses and regarded my reflection in the mirror. As usual the reflection seemed a stranger. It was a bit peaky around the eyes, red and a bit swimmy. But I had bad allergies and my glasses were almost half a  year old, badly in need of replacement but the insurance company didn’t agree. All my friends knew I’d read myself completely red eyed and into an intense headache before giving up my beloved books. I tried that thing, that thing were you pull up the corners of your mouth and show a bit of your teeth. The smile looked pretty convincing but of course it did. I’d been working on it for about a decade.

I didn’t look like I’d been throwing up into an old toilet just a few minutes ago. I didn’t look like a nightmare scenario was on repeat in my head. Every bloody, violent torture it could conjure crisp and clear and visited upon my loved ones. I didn’t look like my chest felt three sizes too small. I didn’t look like my bones felt like a million shards of cutting ice. I looked like I hadn’t had a good night’s sleep, deep raccoon rings under my eyes. But those dark half circles were normal to me anyway. I would sacrifice sleep for a good book. It was a running joke. No snot or vomit on my t-shirt.  I looked at my smiling face and the doorbell rang. I left the bathroom, called to my mom that it was my friends, and answered the door. C and H stood there, ready to go. I smiled something felt weird and said “Sorry guys. My stomachs acting up again.”

I think they argued gently with me, conjoling me to come along. I don’t remember what I said but I shook my head a lot, with that weird feeling smile on my face. I simply couldn’t go. They all knew I was having stomach problems. I’d been missing a lot of school lately to go to all kinds of doctors. I still had a band-aid on the inside of my elbow from a blood draw the day before. I simply couldn’t go, so sorry, not feeling well, can’t chance it, cannot go. They left with odd looks on their faces that I didn’t even try to understand.

I closed the door, locking it and checking it as was my compulsion. I went to my bedroom and laid on my bed facing the wall. I think my mom said something to me but I can’t remember what it was or if I replied. My memories of this day are very clear before closing the front door as my friends walked away. After that things are very hazy for a long, long time and I stayed in that haze, knowing something was terribly wrong with me but no longer caring.

My mouth opened and I said “Sorry guys. My stomachs acting up again.” What I was really saying was “I’m done fighting. The fear wins. I’m not leaving.” And I wouldn’t leave that house, my childhood home, for any reason except school for the rest of the year. My friends stopped asking me to go out and I drifted farther and farther into the hazy abyss where I allowed fear to control my every decisions. Where my bones felt so heavy I could hardly hold myself up and words were just too difficult to put together.

The movie we were going to see was Hayao Miyazaki’s Spirited Away. The first movie of his I’d seen was Princess Mononoke. I recorded it on VHS and watched it over and over, as many times as I could. Sitting in the closet of my old room, my both my sisters asleep in the main room. That tiny TV with the VCR plugged in, the volume low enough so that it wouldn’t wake them but just barely loud enough for me to hear if my face were close enough to that little TV. I wanted nothing more than to see Spirited Away on the big screen. Imagine Miyazaki-senpai’s vision larger than life!

My fear was not greater than my earnest, heart felt desire to see Spirited Away. I just had nothing left within me to fight. None of the adults around me seemed to see anything. My friends knew something was up but had no more power than me. What I remember more than the fear as I lay on my narrow twin mattress that afternoon so many years ago was a deep, acidic loathing for myself. That I could just let that stupid, pointless, untrue fear stop my life. Another part of me, a deep, unfeeling thing told that loathing that there was nothing left. I had fought and fought and fought and I could not win. Not only could I not win, no one was coming to my rescue. I had reached out as much as I could. People couldn’t hear me, couldn’t see what was happening.

“There is nothing left,” Apathy said calmly, surely. “I hate you,” Loathing replied. “That is a waste of time,” Apathy rejoined and then things inside me went far away and unimportant for about two years.

Fast-forward fifteen years into the future and I have a ticket for Spirited Away tomorrow evening. I own it on DVD, along with Howl’s Moving Castle which I got to see in a theatre in California when it first came out. And of course I have my first love, Princess Mononoke, which I will watch when I finish this post. But here is that elusive second chance. A chance to tell agoraphobia and depression that they don’t control me anymore. I know their names and I know their faces and that makes me mighty.

But, like my recent Pokemon pickup, I am very nervous and so very excited. I love to go to the movies. And this is a unique chance. Or at least it feels to me like it is. So I’ll wear one of my graphic t-shirts that make me feel braver than I actually am. Probably my Shingeki no Kyojin scout’s shirt. It is not part of my routine and it will leave me exhausted. But I will be elated and exhausted and the people I am going with understand that.

More than anything, the pills, the therapy, brave t-shirts, fidget toys, stimming, knowing my friends understand what I am going through makes me feel strong. I understand it too and I know how to speak so that others can hear my struggles. I can reach them now, even if my hands are shaking and sweaty. They will know. And they will help.

And to anyone else who is going! If you have a 3DS take it along with you in sleep mode. Getting street passes is always a fun bonus.

You are always on my mind (and I hate you)

There is a voice in everyone’s head that tells us we are terrible, unworthy, useless. It says things that we don’t want to think about. Its louder in some people than others I think. Usually its called self-doubt or negative thinking or negative self thought or catastrophic thinking. My voice is very loud and I gave it a name a long time ago. Usually I just call it The Imp but sometimes I call it Asmodeus. For those that don’t know Asmodeus is a king demon mostly mentioned in the Book of Tobit.

For clarification I don’t believe a demon is talking to me in my head. Its just that the thoughts I have sometimes are so polar to view of myself that I (at the point that I named it) could not believe these were my own thoughts. The Imp started talking a long time ago. For as long as I can remember I have had these thoughts that I do not want to have. I named The Imp when I was a small child. My mom used to work overnight as a book keeper for several years. I used to worry that something terrible would happen to her because she would be out in the dark.

My worry was validated by my dad and my grandmother telling me (and my siblings) about the dangers of being outside AT NIGHT. Terrible crimes happened AT NIGHT. Children were kidnapped AT NIGHT. Robberies happened AT NIGHT. Murder happened AT NIGHT. Rape happened AT NIGHT. Doors must be locked and checked AT NIGHT to keep the bad people and things outside.

My mom should not be outside AT NIGHT. In order to keep her safe I used to make precise grids of marbles over and over again until she got home. I didn’t sleep much as a kid so I had a lot of time to make grids. I also had a lot of marbles. If the marbles were too close together or too far apart in a row or column I would have to start over again. If I could get it perfect then I could stop. At least until I started worrying again. I very rarely got the grid perfect. My gross and fine motor skills were very underdeveloped and marbles are tricky things in the glow of a flashlight. Also the number of marbles, rows, and columns needed often changed. So there I was under the bed or in the closet making row after row usually until my mom got home. I could put the marbles away after she came inside and locked the door. She would peek in on us kids but it wasn’t uncommon for me not to be in my bed. Sometimes I pretended to be asleep under the bed and other times I would give my mom a hug and welcome her home. Sometimes I would make her a sandwich so she could have a snack before going to sleep. My mom was troubled by my being bright eyed at 5 am when she got home but there was little she could do. I had never had a great need for sleep and she had learned long ago that if I were left to my own devices with a flashlight and books and my toys I would not wake anyone who needed sleep. She was glad I think sometimes that I was there to greet her when she got home. She worked a lot back then and there was little to see for it. I think she was very lonely and I know for a fact she worried.

She worried about my brother’s asthma and how to pay for his meds. She worried about the cars breaking down. She worried about the toilet that would either never stop running or would remain clogged for weeks. She worried about my grandfather (her dad) who was then a full blown alcoholic in the hellish throes of untreated PTSD. She worried about the cells in her breasts and if one would ever decide to turn against her one day, leaving her four children half orphans as her own mother’s had done. She worried about the bills. And I know she worried, worried, worried about me. I was such a strange child and why did I vomit so often? What if something were terribly wrong with me and the doctors just didn’t know what yet? And why was I so different from my siblings?

I swore in my heart that I would never, ever, ever tell her how afraid I was almost all the time. What could be done about it? I swore I would never, ever, ever tell her about the marble grids. What if she took my talismans away? I swore I would NEVER, EVER, EVER tell her about the terrible thoughts in my head. I did tell her, not very long ago in fact, about my secret nightly rituals and a little bit of how terribly often I was afraid as a child. But I have NEVER, EVER, EVER told anyone about the terrible, terrible thoughts in my head. And so the awful things The Imp would yell or whisper or chortle at me stayed right there in my head.

The Imp because much worse after puberty, not uncommon in women with any kind of disorder or illness. For about three years I was convinced I was a psychopath. I did all kinds of research about psychopaths. My parents had long since stopped monitoring what I read and I was very good at keep things secret. It was during this time that we got the Internet (alas AOL). One of the first things I learned to do was delete the history. So why was I convinced I was a psychopath? Well, I didn’t have feelings. Or at least that’s what people told me. Lots of people. Teachers even. I was cold and detached. I had no friends. I was a loner.

I knew all these things but that wasn’t why I was pretty sure I was a psychopath. It was the thoughts I named The Imp that convinced me. You see the awful, terrible thing I never told anyone was that The Imp didn’t just tell me terrible things were going to happen if I didn’t advert them. The Imp told me I wanted to do terrible things. I wanted to stab my teacher in the hand with a pencil. I wanted to push my sister out of a moving car. I wanted to force my brother to have an asthma attack and watch him suffocate. I wanted to stab my beloved dog with the sharp knives from the kitchen. I wanted to set my house on fire with my family in it and watch them all burn. I wanted to kill random people I saw in the grocery store. And I would like it. In fact I would LOVE to do these things. I would do them all and I would never be caught because, as my research told me, women were very rarely ever psychopaths. Or at least murderous ones. I would do them all and I would ENJOY it.

These days I know that the proper label for The Imp is intrusive thoughts. Intrusive thoughts are the defining characteristic of Obsessive Compulsive Disorder. My particular flavor (sub-type) of OCD is Harm OCD. I have intrusive thoughts of a harming/violent nature (the obsession) and the response I engage in to alleviate the discomfort of these thoughts (the compulsion). I have thoughts of hurting the people and animals I live with. I have thoughts about hurting complete strangers. I worry that I could unknowingly do something or fail to do something that results in someone being hurt. I worry that I don’t find these thoughts disturbing enough. I worry that I enjoy what The Imp tells me.

I have told doctors and my friend R about some of my intrusive thoughts but not the worst of them. Lately my anxiety has been worse. A change in meds has helped but my depression has been worse. But worse than that my intrusive thoughts have been so much worse. I had to stop playing with my goddaughter and leave the room because I became convinced that if I remained in the room with her I would hurt or somehow “infect” her, thereby harming her. When R asked about my sudden departure, I lied saying I had a bad stomach cramps which I eventually did end up having as a result of the emotional upset my intrusive thoughts cause. I have thought about hurting our sweet, sweet dogs because they shouldn’t love me as I am a terrible person and they just don’t know it yet. But they will once I have hurt them. I have thoughts about hurting my youngest goddaughter, an infant who cannot defend herself. And I want to hurt someone so that everyone will know just how aberrant I am and they will lock me away where I can’t hurt anyone ever again. And maybe then, finally then, the thoughts will stop.

But I don’t hurt anyone. And I am not insane. I am not a psychopath. If I were these thoughts wouldn’t bother me. I wouldn’t engage in the compulsive behaviors because I would feel no distress. I had this belief, this delusion, that if I told someone they would hate me because who couldn’t hate something as vicious as me? Who wouldn’t stare at horror in the fullness of my violent thoughts and fear me?

But last night I told R and here I am now. I am not a murderer. I am not violent. I do not want to hurt anyone. The Imp talks and laughs and dances. It tells me terrible things and I perform a mental ritual to take away the distress. But The Imp is not real. The thoughts I have are not representative of me. The more I try not to have them the harder they are to ignore. If you have these thoughts tell someone. Don’t suffer alone. This terrible secret has a name and can be treated.

OCD can cause suicide. OCD also kills in small measures, taking a little piece of you with every intrusive thought. Get help. Get support. Get education. Get an advocate. The Imp is not right. The Imp is not the truth.

Look here for some excellent articles:

ocdla.com

Harm OCD: Symptoms and Treatment