I need people to understand I don’t know what I’m doing 100% of the time, but I do the best I can with what information I have.
I need time to be a clueless 24 year old before I become a clueless 25 year old.
Little boxes on the hillside,
Little boxes made of ticky tacky,
Little boxes on the hillside,
Little boxes all the same.
“Little Boxes”- Malvina Reynolds
One of the main difficulties of having an invisible disability is it is invisible. Sometimes my coping strategies make it appear as if I’m just like everyone else so people don’t always understand why I struggle with the “simple” things. These same people don’t realize the need to check every time I leave the house to make sure pants were not forgotten when rushing out the door. Little things some people do without thinking confuse me and vice versa.
The biggest issue I personally struggle with is relationships. Relationships are all based on communication in some way, shape, or form. Having a disability rooted in social difficulties obviously can be a big challenge. It can cause strain on my relationships because people don’t always understand me.
Letting people see my flaws and challenges takes a lot of trust on my part. I wear my heart on my sleeve and being so kind can hurt me as much as help me. It is all too common for people to use and abuse people like me since I’m such a caring person. Manipulation does not make sense to me and I am always the last to know if someone is not being straightforward with me or worse, if the person is dangerous.
The way the world looks to me helps to compound my relationship issues. Why wouldn’t people be nice to each other? What harm can come from having conversations with people? If I have the power to help someone by doing something as small as listening to their problems, why wouldn’t I?! Love, happiness, and compassion are traits spread by giving them to others.
That being said, I’m not sure when people care about me. This is not a “poor Brigid” moment, it’s just the truth. It is very confusing to think people will be there for me the way I am there for them. As empathic as Autistic people are, unless people bluntly tell us how they feel we don’t understand. Unspoken emotions and unsaid promises are never fully received. Like a living game of telephone, the message get muddled.
It was a joke for a long time about having an accidental ex-boyfriend because I never realized we were dating until we broke up. My friend Stephen Shore tells the story of accidentally dating the woman who is now his wife. How can this happen? Well as someone who has dated another friend for an undetermined period of time before we decided to take a step back, it’s REALLY easy for me to not understand the nature of relationships.
I’ve mentioned schemas before or basically having a blueprint of how things are supposed to look like. As a person who needs those blueprints to make sense of the world, there are not always the best design plans floating around. Movies and books promote conflict in relationships to move things along or bring people closer together. I thought there were right and wrong ways to date a person or to be someone’s BFF (Best Friend Forever). As someone who also has brain damage and does not actively remember the majority of the first 16 years of my life, I’m missing a LOT of the blueprints even other Autistic people have learned.
The hard/easy truth I’ve learned over the past year is no one has any idea what relationships are supposed to look like. Everyone is stumbling around looking for the magical blueprints that don’t exist to have the perfect relationship. Millions of magazines are sold every year telling people how to be a good friend, girlfriend, boyfriend, or a good person who people want to be friends with. Most of this information is so conflicting it can be comical at times, but distressing for the same reason: there is not a “right” way.
So I’m working now, and will continue, to try to figure out what a friend looks like to me. We teach Autistic kids how to treat other people so they can have friends, but no one teaches us how friends should treat us. We stumble sometimes in the world and get hurt because we don’t understand why people would want to take advantage of us or lie to us.
Growing up, I heard the story a goldfish could only grow as big as its environment. My brain translated this into a picture of different sized containers contained fish of corresponding sizes. Somewhere in the translation or transcription of my brain, I thought relationships worked the same way. As much as I’d like to put relationships into nice little boxes to organize things, they are wild things. Just like goldfish, relationships continue to grow as you grow. Some relationships are only for a short time and other cases you find friends for life. I’m still working on understanding what relationships are supposed to look like and I’ve tried my best to not hurt others by my lack of understanding. In many ways, I’m just a kid and doing the best I can to act like an adult. In more ways, I’m just like everyone else because we are all trying to do that.
“The most common cause of stunting is a lack of understanding of a fish’s requirements resulting in a lack of appropriate care. A stunted fish is not a healthy fish.”- It’s Not Just a Fish Organization
The inequalities of reciprocity
have confused me, endlessly.
Some take the bone from their mouth to feed the poor
while others make the bones shiver with their cold stares.
I can’t be alone
seeing the masses gather without a home
hurts me so much.
By isolating ourselves
and putting our hearts on the shelves,
we forget our membership to the world.
Labels and foibles and microwave dinners keep us apart.
Forget my origin and my stats
I’m just human,
or at least I’ll pass.
We strike out to others to avoid the blows,
when all anyone really wants is a comfort everyone knows.
To feel accepted and loved for who we really are
that destination should not have to be this #$%ing far.
Why must we hurt others to make our own hurt not show?
The math doesn’t add up; only down below.
I think people need to throwout the precal algebra calcu-what’s it
and remember what we learned back before we were told to learn.
Be happy, be loving, and that will grow.
Stand up tall and smile to someone you don’t know.
Love doesn’t need math because exponents are too small,
too small to fully describe the power in us all.
So let the love shine brighter than the sun
so maybe there will be less hatred for everyone.
No really, I’m busy.
It’s not me trying to be rude, but my own health and sanity (what’s left) comes first.
Being skilled at multitasking has created some problems when the tasks begin to multiply. Even though people in my life may forget, I am disabled. Executive functioning skills refer to the ability to plan and organize things. I don’t have good executive functioning skills and I never have. I’ve shaped my life to compensate for my lack of that skill set.
As frequent readers of my blog know, big things are changing in my life. So many changes that what few coping strategies I have have fallen apart. I’ve gotten overwhelmed lately with all the things going on in my life and how sudden things have begun to change. There have not been enough hours in the day to do everything I want to do and sometimes not everything I need to do.
Just for giggles, I’m going to highlight everything I’ve been doing for the past couple of weeks. I’m currently a full-time grad student working on the first classes towards my masters. I’m also still working full-time as the lead staff for the next few weeks as we transition people to take my place. I’m also working part time (right now) as a TA for an online class geared towards Direct Support Professionals working with Autistic individuals. I also have responsibilities in my Vaudeville troupe, as well as needing to rehearse on a daily basis. I’ve also begun doing freelance writing and working on multiple book projects.
So yeah, I’m busy
Now I can function under extreme pressure. The college I went to was a one-course-at-a-time type. That means you are in class every weekday from about 9am to 3pm with a two hour lunch break. My free time would normally be filled with work, homework, other leadership responsibilities, and my social life. Part of the reason I have so much fun relaxing with nerf guns or dressed like a zombie is because I work so hard.
But even I have a breaking point.
Now my breaking point is different from other people’s breaking point. Other people will give up some responsibilities before they reach their breaking point. For me, my body will give up before my mind admits defeat. It is only when faced with my body failing from the stress and pressure, do I finally give in.
My point came this week after almost a month solid of everything. Anxiety would wake me up from my sleep. Naps were frequent and about 2 hours in the middle of the day. I kept forgetting to eat at regular times so my tummy started to hurt randomly during the day. I wasn’t happy with what I was doing.
So I changed.
I recharged this week and said good bye to my full-time job, again. My fridge is stocked with healthy food and some premade meals to prevent grabbing junk food on the fly. Laundry and chores are done (well except for the clean laundry next to my bed-nest). Sleep was my best friend this weekend and I socialized with other friends, but only in small amounts. Also the pile of unopened mail was opened after being unearthed from beneath the fruit bowl.
I’m not like other people. My average days could send most people into a meltdown. I’ve always liked to be busy and am a failure at pacing myself. I give 100% to everything in my life. Busy is not a temporary thing for me: Busy is a state of mind. Constantly moving, constantly thinking, and refusing to let life pass me by: that’s busy.
Busy is not a negative thing, either. Being busy makes people realize what is important to their lives. I choose to be busy with things that make me happy. My busy-ness has a positive impact on dozens of lives, when things don’t get too overwhelming. Being busy can be a great motivation for change. If you were able to be in control of every hour of you day, who wouldn’t want that? Life is busy, so get busy with life!