The world of perpetual twilight and melancholy: Part 1

Note: This post may be triggering to others with derealization and depersonalization. Please also note everyone’s inner experience with this illness is different, this is just one such experience.





Fall is upon us. First cool nights, then soon after cool days. The sun noticeably lower in the sky. Leaves changing colors. Oranges, yellows, and browns dominate what was green. It’s a beautiful sight to live in New England this time of year. Though many years I have missed this beautiful change. You see, even though I have never been away from home, I have always lost time every fall. 

Losing time is kind of like that moment when your not sure if you turned off the coffee pot because you had so many other things going on in the moment. For some one with a dissociative disorder, triggers and stress can cause us to lose time for sometimes moments, other times, for days. This time of year it’s violet who is triggered the most and she is also the part of me that holds the most pain. 

Violet. Just writing her name envokes a vision of a strong young teen with pale skin wrapped in a fog of darkness with dark purple petals in the air. She would whisper things to me about how cruel the world was and how she wanted to die. All the whole time I writhed in bed, her strong emotions were to much for me to cope with when I became aware of her. Emotions that I could not alone understand as a child or cope with as an adult manifested subconsciously as a separate identity. I had experienced other parts before violet, but she is the one that troubles me the most. 

Learning to love violet has been a long road. At first she felt betrayed by everyone, and would not trust anyone. This became a problem with the younger parts who will trust very easily. She also is one of the only parts that can take executive control. Roommates would ask why I was up all night, when I was sleeping. At work I was brought into a meeting with a worker in tears because she could not work under me any more because I was unpredictable. I was self harming almost every night but no one I called for professional help could with my income. I eventually was hospitalized for three weeks, misdiagnosed, but it did get a me a therapist.
I think that’s enough back info on violet. In the next part I’ll talk more about her and her world. 

The world of perpetual twilight and melancholy: Part 1

Note: This post may be triggering to others with derealization and depersonalization. Please also note everyone’s inner experience with this illness is different, this is just one such experience.





Fall is upon us. First cool nights, then soon after cool days. The sun noticeably lower in the sky. Leaves changing colors. Oranges, yellows, and browns dominate what was green. It’s a beautiful sight to live in New England this time of year. Though many years I have missed this beautiful change. You see, even though I have never been away from home, I have always lost time every fall. 

Losing time is kind of like that moment when your not sure if you turned off the coffee pot because you had so many other things going on in the moment. For some one with a dissociative disorder, triggers and stress can cause us to lose time for sometimes moments, other times, for days. This time of year it’s violet who is triggered the most and she is also the part of me that holds the most pain. 

Violet. Just writing her name envokes a vision of a strong young teen with pale skin wrapped in a fog of darkness with dark purple petals in the air. She would whisper things to me about how cruel the world was and how she wanted to die. All the whole time I writhed in bed, her strong emotions were to much for me to cope with when I became aware of her. Emotions that I could not alone understand as a child or cope with as an adult manifested subconsciously as a separate identity. I had experienced other parts before violet, but she is the one that troubles me the most. 

Learning to love violet has been a long road. At first she felt betrayed by everyone, and would not trust anyone. This became a problem with the younger parts who will trust very easily. She also is one of the only parts that can take executive control. Roommates would ask why I was up all night, when I was sleeping. At work I was brought into a meeting with a worker in tears because she could not work under me any more because I was unpredictable. I was self harming almost every night but no one I called for professional help could with my income. I eventually was hospitalized for three weeks, misdiagnosed, but it did get a me a therapist.
I think that’s enough back info on violet. In the next part I’ll talk more about her and her world. 

Living in multiple realities

Sometimes  I wonder if the reason others have a much easier time navigating life is they don’t need to question their perception of reality.  They go about their lives never doubting the reality of anything or themselves.  Being neurotypical they never experienced the crippling isolation that can come from being shunned from peers or from the pressures of family to conform.  They have supports and loved ones who keep them grounded in that reality.

Within major depression causing extreme isolation as a child my reality began to become malleable.  Unmet subconscious needs manifested as alternate versions of myself.  Soon these parts took on their own views of reality, most are subtle differences, but a couple are so drastic that when triggered I can easily loose touch with reality.  Without these parts I feel empty, and experience very little emotion or empathy.  I know from researching OSDD that they are parts of me, and I am not really whole without them.

The problem is being autistic I have a hard enough time coping as it is. With very little support and even less understanding from those around me, giving these parts time to heal has been very tricky.  Stress of different types (life problems, sensory, occupational, relationship, ect) can cause an acute reaction forcing a part to act out.  These moments are when I need people who tell me they care to understand to actually CARE and UNDERSTAND.

Most of the time I am just put down by my boyfriend when these events happen.  I can’t talk about them since he always wants to know what exactly he said, but I can’t tell him.  I just feel that part inside hurting.  It’s the same thing I get from my family when I spent time with them.  This becomes a problem because if I am triggered while alone most parts will not seek help and I have a long history of self harm, but I rather be alone than be around people who put me down.

 

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This is a difficult time of year for many of my parts and was thinking  to do a piece next about what it’s like to be in a certain parts reality, with the parts permission.   Let me know if would interest you, like or comment.

Summer of Isolation

This summer was never meant to be that different from any past summer.  I had plans, like to try to get out more.  To try to work on my anxiety and connections with people I care about.  Instead this summer has been the most isolating summer I may have experienced since middle school.

Back in the beginning of July, I had surgery.  It was supposed to be simple, a couple weeks of soreness and back to life as usual.  It was anything but simple.  I had complications and needed a second surgery that same day to stop a hematoma.  I was stuck in bed for two weeks and the three week following I could not do much of anything.

Finally about two weeks ago I was about 90% and could be more active and return to my life.  At least so I thought.  Last weekend, only after a few days of normalcy, I got sick.  Nothing horrible, at least I thought at the time, just some flue like stuff.  After the forth day of fever I called to see my doctor.  Unfortunately it was Wednesday, and she could not get me in until Monday.

I made the appointment anyways, I could cancel if I felt better. The weekend came and it was beautiful out.  I was better, so I decided to go for a bike ride.  After only a few miles I felt dead tired.  I thought “Am I really that out of shape after surgery?”. I chalked it up to that.  The next day again I rode, and exhaustion followed.

The next day was Monday.  I went to the appointment and told my doctor everything that was going on and so she ordered blood tests for a bunch of things.  I went on with my day worrying about the tests, she ordered some scary tests.

I get an email and then a call the following morning.  I have Mono, seriously Mono.  So after finding out, my plans to spend time with my sister, and my friend were canceled quite dashingly.  Even though 90% of adults are immune at my age and it’s not all that easy to catch if one if careful, I might as well have Ebola.

The problem now is Mono stays around a while.  So I get to look forward to 1-3 more weeks of this.  I hope it goes away quick because in less than four weeks I go back again for surgery.  This time recovery is going to be about 4-6 weeks of bed rest.  I am happy that I get the opportunity to have these surgeries.  I just don’t feel so isolated anymore, I can’t handle it like I used to.  Maybe it’s because of hormone changes after the first surgery, or new medication from my hospitalization in may, but it’s harder to stop meltdowns now.

Well that’s enough for today.  Sleepiness setting in again.

Shame and Aspergers

In the past few months learning about my dissociative disorder, trauma and shame go hand and hand. This has me thinking a lot about what shame means to me and when are the times in my life when I experienced shame the most. 

After much thought, I have come to the conclusion that shame played a role in almost very day of my life. As a child with Aspergers in the 80’s and the younger sibling to a neurotypical child, I was constantly conpared to what is normal. My parents shame of having an odd child and their “what will the neighbors think” mentality pressured them to trying to force me to conform to their vision of a normal child. They tried different punishments. One was forcing me to write lines. My hand writing was/is horrible. When I was diagnosed with Aspergers I was also diagnosed with disgraphia. I used to have to write lines for long periods of time and if you are disgraphic you know it can be extremely painful all the way up your arm. I thought all kids felt this, I thought the reason for this punishment was to feel pain. Due to this my writing got worse not better, so my father decided to try marking me write with my right hand. He figured I was not really left handed and was just mimicking my mother who was. I don’t really remember how long he tried that for, I just know it did not help me feel like a loved child. This was usually the method of parenting my father took with me. If he did not like the behavior I was shamed repetitively until I could hide it. I was called snow shoe because I ran funny, sega butt when I got into videogames, and whale boy when I gained weight. 

After many years of this I eventually took on their shame. I still can’t break free from it. It fills me with doubt knowing some of my behaviors are not normal and still no matter what I do, they can’t be fixed. All the shaming did was help me hide things from everyone and feel alone. I grew to fear my father and I am not close to either of my parents. 

Acceptence is the key to love, not shame. We are all different, but all deserve to be accepted.

One of those weeks

I have spoke in the past about how I dislike people judging others on the spectrum based on their functioning ability.  I feel judging an aspie about their capability during a good week can undermine their struggles during a more difficult one.

There are just times when it’s like all my skills just go into hiding.  I opened my art programs the other day and was just blank.  I could not come up with anything.  For my last blog, I just doctored an image from an old animation.  I have not done any new work in a while, and this bothers me.  Nothing really interests me when I get like this.

I know it sounds like depression.  This very well can lead me to a bad place quickly, but that’s because any aspie who can’t do their interest can feel empty.  I know this is not my fault, and I am trying to be compassionate to myself.  Still it’s hard not to feel so useless.

 

Aspergers, my very (not so) well hidden disability.

Just like every one else on the spectrum, autism means many different things to me.  Being overwhelmed by  crowds of people, loud sounds can shut me down, and no matter what, after talking to me for more than twenty minutes I will say something out of place, rude, or just not shut up.  Yet most people can be very dismissive when I open up and do tell them.  Aspergers is a disability to me in that it does not ever allow me to be disabled.

The way I mean this is no matter how this disability effects my behavior, it’s not a valid reason.  If I shut down, I’m “running away”.  If I run off, I’m “acting childish”.  If I get so excited I start stimming, I need to “calm down”.  After all, if I can speak and look normal for small amounts of time I can’t be autistic enough that the other moments can’t be kept under control, right?

I am not trying to say I should not be held responsible for my actions.  I am saying that I am tired of being held to neurotypical standards when I am anything but.  Holding me to those standards holds me back.  If I have to be afraid to talk to someone cause I will mess up, why would I want to talk to people.  If I have to be stuck at a party, and I can’t go anywhere quiet when I need it, why would I go to any events.

I pushed myself, for many years, well beyond my limits.  Holding myself to being able to handle more, and work harder than anyone.  I also thought I could do it alone.  After all I was raised neurotypical,and was dismissed every time I spoke anything otherwise.  I am all for pushing people with aspergers, but too much is going to lead to major psychological problems.  For myself, I feel like all of the memories I have as a small child are of being told to act normal.

It bothers me so much that many of us get told that we don’t seem autistic or we are mildly autistic, and when our traits do show, we are told to act normal.  It angers me that there are those who believe that, and suffer, struggle, and feel like failures everyday just because they are differently abled.  Aspergers is a life long disability, I should not have to feel shameful about being born this way.