I was really struggling with what to write for this month’s #PepperDay post. I wrote a post in a group on Facebook a couple of days ago that has gotten far more attention than I ever expected it to get. It’s part of my autistic advocacy work, so luckily the vast majority of responses has been positive, but it has me completely out of my comfort zone.
I did not fully think through how much reach it would have when I wrote it, and since it was approved I’ve spent a good amount of time trying to keep on top of notifications about reactions to the post and reading and responding to comments.
So, for today’s #PepperDay post I thought I’d do something a little fun.
First, though, some housekeeping from last month’s post. My garden gnome arrived and I absolutely love him. Here are some pictures of him and what our walkway looks like with all our solar powered decorations all lit up.
Okay, now to explain the title of this post and have some fun. Lately FB has well and truly figured out my personality and has demonstrated that by the shirts that it is suggesting that I buy. (And to be clear, I am in no way being sarcastic, these suggestions are absolutely directly in line with my personality.)
Here’s what Facebook has suggested, so far I have only been able to purchase the first suggestion.
There’s a lot that I could write about this #PepperDay. April is Autism Acceptance Month and I have joined groups that are autistic led and have learned so, so much about myself. But it’s also been a frustrating month because there are still so many people who refuse to listen to #ActuallyAutistic voices. People will come into a space that has been set up for autistic people to answer their questions, we will take the time and energy to educate them, and they will either decide that we are wrong (about our own lived experiences) because it’s not the answer they were looking for, or they will continuously misinterpret things no matter how plainly and clearly its explained to them and will talk down to us and be patronizing and condescending. It’s exhausting and I am so grateful to the people who actually listen to us and change their way of looking at the world.
But, enough talk of frustrating things!
#PepperDay🌶 and Earth Day🌎 are the same day this month, and Ra from over at Rarasaur.com asked for happy pictures if we could provide them, so I’m going to share some photos of our garden, garden decorations and a garden decoration that I am anxiously awaiting the delivery of. I would go outside and take current pictures of my garden since the daffodils have bloomed much more since I last took a picture of them, but this Earth Day happens to be chilly and windy here in my part of New England…
Here is a screenshot of the amazing garden gnome that I am waiting for.
He’s solar powered and his hat lights up! I’m so excited!
It is unclear what my neighbors in my condo association think of my decorations… even before my amazing garden gnome gets added to the collection. I’m on the condo association board though, so that might help my case. 😂 I probably will try to only add very small things from now on… although some pink flamingos are tempting!😉😁🤣
Long time readers of this blog will remember that this used to be a place where I would come to talk about big and challenging things that were happening in my life, or big and challenging things that had happened in my past.
And then I changed things up a bit, deleted some old posts due to some changes in life circumstances, hoping that they would no longer be relevant.
And then I stopped blogging altogether for a while, although I still considered myself a blogger.
Fair warning: This post is going to be a bit heavier than the sort of stuff I’ve written about for a while, but I’m hoping to keep it to a fairly short summary of my last 4 years (give or take).
4 years and 2 months ago in November the US election happened, and, although I am a fairly privileged white woman, I was terrified.
4 years and 1 month ago, 2 days after Christmas, my parents house burned down. An electric blanket that my Dad was asleep under caught on fire. My Dad was lucky to escape with only minor injuries.
4 years ago when the fire happened I still lived across the country from my parents. I spent all my time afterwards organizing things online to get them the help they needed, including creating a fundraiser.
4 years ago at the end of April my mother was finally given permission to let me know that my sister not only was pregnant, but had actually had the baby about 4 months earlier on Christmas day, 2 days before the fire. I had not been in contact with my sister for several years because she is abusive, but during the time that she was pregnant I had been trying to reestablish contact and give her another chance. I did not know that she was pregnant when I was reaching out to her. She never responded to my attempts to contact her. She could have told me she was pregnant, but instead I was the last person in our family to find out when my niece was already 4 months old.
4 years ago at the end of April I tentatively reestablish contact with my sister.
4 years ago in May my Grandfather suffered a major heart attack, had quadruple bypass surgery and was fitted with a pacemaker. He was then readmitted to the hospital later in the month because of an infection and has been in and out of the hospital over the last few years because his heart condition causes him breathing issues.
4 years ago in July my parents and my brother were able to move into their rebuilt house.
4 years ago in July my husband, Curtis, found out that the project that he’d been working with for almost 10 years was going to be moving to a different company and everyone would be losing their jobs by October. We had a choice for him to try to find another job within the company or take the severance package and try to find another job in Utah or move back to Connecticut. We ultimately decide to try to stay with the same company.
4 years ago in September Curtis started a work from home position within the same company.
4 years ago shortly before Christmas Curtis finds out that his new position is going away. This time there won’t even be a severance package. We have no choice but to move across the country to live with family. We set up a fundraiser to help us do that.
3 years ago in January we leave Utah and drive a U-Haul truck filled with all our belongings across the country to Connecticut. Along the way we spend one night with my sister and we meet her child for the first time.
3 years ago in January, 2 days after meeting my sister’s child for the first time we are driving through a blizzard in Ohio when I get a text from my sister. She informs me that she will be moving into the room at my parent’s house that was promised to us and tells us that we need to find somewhere else to stay. She is only supposed to stay a month.
3 years ago in January we arrive at my parent’s rebuilt house. We stay a week before having to move in with my in-law’s in a different part of the state.
3 years ago in February we realize that my sister is refusing to leave. We cannot stay long-term with my in-law’s because they rent an apartment. We move in with my Grandparent’s next door to my parents.
3 years ago in March Curtis finally found a job in Connecticut. He is working second shift.
3 years ago in June my sister finally moves out of my parents house. She had been abusive to everyone the entire time she was there. She moved in in January, was supposed to be gone by February but stayed for 6 months even though my parents wanted her to leave. She had a house that she could have moved back to at anytime while Curtis and I were homeless and staying with family who never planned on having us living with them.
3 years ago in June Curtis and I are finally able to move into the room that we were supposed to be living in since our move from Utah. My sister throws a fit when she finds out that we moved in.
2 years ago in February my Grandmother on my Mom’s side dies. She had been sick for a while and eventually slipped into a coma. My family had to make the decision to let her go because it’s what she would have wanted. My sister was around constantly and was abusive towards my mother who was losing her mother. I was unable to truly grieve of be a part of my grandmother’s funeral as I might have wanted to be because all my time was spent trying to deal with the trauma of my abusive sister making everything about her. I was overwhelmed.
2 years ago in February and March my sister finally leaves again and I help my Mom and Aunt clean out my Grandmother’s apartment.
2 years ago in April Curtis starts a new job. We go from going to bed at 5:30am to getting up at 5:30am.
2 years ago in September I self diagnosed myself as being autistic. My brother, who was living in the room right next to ours, had finally gotten his autism diagnosis in his mid 20s. He and I are polar opposites, he needs constant noise and is loud where I need quiet and am quiet myself, but when I realized that autism presents differently in everyone, everything finally made sense. I finally understood why living in such a loud house since we were able to move in was so traumatic for me, among other things.
1 year ago in January I finally start to get help for my extreme anxiety. I go on medication. I go through a few different people before finding the right fit. (Mainly someone who actually believes autism is a thing…) I am unable to continue talk therapy because it is too expensive, I am only able to continue to see the person who prescribes my meds.
1 year ago at the end of January my mother slips into a deep depression when the grief of losing her mother catches up with her. I am left to pick up the slack around the house. She seeks help, gets back on medications (this isn’t her first bout with depression) and is finally starting to feel like herself again when…
10 months ago in March the Pandemic hits. Life changes for everyone. My mom must wait longer before returning to work.
4 months ago in September my husband and I magically buy ourselves a condo during the middle of a pandemic. We become first time homeowners.
4 months ago in September I am no longer living at my parents house and can now officially cut my narcissistic abusive sister out of my life again.
2 months ago the election happens. There is much stress until the election is finally called.
1 month ago around Christmas my body and brain decide that now that we have our own place again I can start to process all the trauma of the last 4 years, starting with the house fire. I have been living in trauma for the last 4 years nonstop.
Just a couple of weeks ago there was domestic terrorism in Washington DC and I seriously began to doubt my brain’s sense of timing.
So, that is an abbreviated (believe it or not) rundown of all the serious things that happened over the last 4 years (give or take) and all of the trauma that I am trying to work through now.
I felt that you all deserved to know what was happening while I had disappeared from my blog. Hopefully my next #PepperDay🌶 post will be more lighthearted.
I absolutely had to take this picture earlier this morning because the lighting was just right.
This is one of the objects that I inherited from my Grandma. When I was much younger she used to work for a phone company that now probably no longer exists. I have no idea if this is related to her job at the phone company though.
I interrupted what I had been working on to get the picture before I lost that perfect light. I took a few pictures and then went back to what I was doing.
As I was working on what I had been working on, (updating apps and moving things from internal storage to my SD card) I also spent a good chunk of my morning trying to remember the name of the thing that I just photographed.
I knew that I loved them.
I knew they were a time keeping device.
They also use sand to keep time…
Sand-timer??? That doesn’t sound right…
And so on and so forth for a while until finally the correct name floated up to the surface of my brain.
Although, I’m fairly certain that this tiny version’s sand runs out in far less than an hour… I’m not even sure it lasts a full minute…
So, I had the picture, then I finally had the name… Time to write a blog post…
Only, now my phone needs to restart…
And now it won’t recognize my SD card where my photo in the perfect lighting is stored…
After several more restarts and several failed attempts to just “unmount” the SD card so that I could then “mount” it again (because that has worked in the past) I eventually had to find the little tool to physically remove the SD card from my phone.
I found the tool and ejected the SD card… And apparently the SIM card too because they are apparently in the same tray.
After dropping the SIM card several times while trying to get the tray back into my phone, I finally succeeded in reinstalling my SIM card and my SD card and like magic all my apps (including WordPress) and photos reappeared, and I was finally able to get what was supposed to be simple post written.
This gorgeous tile work is part of the backsplash above my bathroom sink. It is one of things that I fell in love with when we were first looking at our condo. I hope that you’ll bear with me as I use this photo as a backdrop for a little bit more serious of a post than what I’ve been doing for most of this month.
Ra Avis over at Rarasaur blog did a post a couple of days ago that got me thinking. She chronicled a few of the things that she deals with after having suffered a series of mini strokes about a year and a half ago.
I have not suffered any mini strokes, what I deal with is minor compared to what she deals with. But I was able relate on some extremely small level.
I am Autistic. I made this discovery (that I’ve always known on some level) a little more than a year ago. I am also on several medications for extreme anxiety. The medications help to keep the anxiety at bay (for the most part) but they also do not so great things to my memory, which in itself is anxiety inducing…
Anyway, to the point of this post.
I am a creature of habit.
I figure out a routine for how to do something, and that’s how I do it forever and ever from then on… (Seriously, people will make fun of me for my routines and how precise they are) Until something forces me to change that routine.
Change throws me into chaos. I don’t know how to deal with it. Until I am able to establish a new routine I am the furthest thing from a happy camper.
If I am in the middle of a routine and someone decides to help me and things end up getting done “out of order” I become lost and angry with the person who helped me, even though I know that my anger is unfair.
If I am in the middle of a routine and I get interrupted, I can quite literally have no idea how to proceed.
Here’s a real life example that has happened to me more than once. I am in the process of getting ready to brush my teeth (that’s where the photo above ties in) and something distracts/interrupts me. I turn my attention back to trying to get the toothpaste from the tube to the toothbrush and I have no idea how to make it happen.
I brush my teeth twice a day, everyday. I know how to brush my teeth.
Except when I suddenly don’t anymore because I stopped in the middle of my routine and I don’t know how to proceed. I don’t know which hand does what, how to hold things.
I am lost, scared and confused.
I sometimes have to start over from the beginning so that muscle memory can kick in and I can proceed.
Most people don’t know that I’m Autistic. Some people would catagorize my Autism as “mild”. I hate those sort of labels. I have learned how to appear neurotypical by masking and routines, but how my Autism effects me is anything but mild.
My routines are how I pretend to be a fully functioning adult.
Without them, I am left holding a tube of toothpaste with no idea what to do next.
I’ve always loved singing and will almost always sing along with whatever music happens to be playing. And when I sing along, I always adopt whatever accent the artist singing the song has.
I went through a Les Misérables phase in middle/highschool and the fact that I adopted an accent was extremely apparent during that phase because I always listened to the original London cast recordings.
My friends would point it out and make fun of me for it, but I couldn’t understand why they didn’t do it too. In my mind, the accent of the artist is part of how the song is supposed to sound. Not adopting the accent would be wrong.
This doesn’t just happen with music though. I have to be very careful when talking with other people not to slip into other accents. Either the accent of the person I’m speaking with or potentially an accent that I’ve picked up from a TV show or movie that I’ve recently seen. I pick up accents extremely quickly and will slip into them without even being consciously aware of it.
Words and phrases will get stuck in my head as well and will become a part of my vocabulary. I quote lines from books, or TV shows or movies quite frequently as part of conversation with others.
I literally just realized last night that all of this behavior is probably part of my Autism. It is probably part of something called Echolalia. The Bing search results for the definition of Echolalia were a bit insulting though.
echolalia [ˌekōˈlālēə] NOUN psychiatry meaningless repetition of another person’s spoken words as a symptom of psychiatric disorder. •repetition of speech by a child learning to talk.
The repetition is not meaningless. It is an attempt to communicate. An attempt to connect. My (7 years younger than me) brother is also Autistic. He has an official diagnosis and everything, because he “looks like” what doctors expect to see when diagnosing Autism. Even with him “checking all the boxes” so to say, it took until his mid 20s to finally get his official diagnosis. He just turned 30 last October.
Anyway, my point in bringing up my brother is that he almost exclusively communicates through quotes from cartoons, or TV shows or movies, or through “scripts” that he has created referencing these things.
His communication style, my communication style is not “meaningless”. We are attempting to communicate and connect with the world around us in ways that make sense and are comfortable to us.
I felt like I wanted to write a blog post, but I’m not exactly sure what it is that I want to write about, so here we are. This post could very well be all over the place.
As I’ve written about previously, I’m on a bunch of medications to try to get my anxiety under control. I already have FOUR different pill organizers strategically placed about in the hopes that I’ll remember to take the correct pills at the correct time.
That strategy was no longer effective so I recently set up a bunch of alarms on my phone to remind me to take my pills. So far it’s working out okay, but I’m totally expecting that at some point I’m going to be in the middle of something, silence my alarm and then forget to take my pills.
And speaking of my anxiety medications, boy have I needed them the last few days.
My state is planning a “partial reopening” starting on May 20th. It is contingent on quite a few conditions being met, one of them being a decline in hospitalizations for 14 days. 2 days ago hospitalizations rose compared to the day before, therefore resetting the count.
Only my state is saying that they have “achieved” this goal.
That’s not how this works.
My state is still moving forward with it’s plans to start reopening. They are literally playing with people’s lives here and I am beyond upset.
I think that’s about all I’ve got to say right now. I hope to have more coherent less ragey posts soon.
Now that April’s challenge is over I could just go back to ignoring my blog again until the next challenge comes along, but I’ve decided to at least put a little bit of effort into keeping this blog alive now that I’ve resuscitated it.
It’s been so long since I’ve written anything other than haiku on this blog that this feels weird, but this used to be one of the places that I could go to process things, and sometimes that needs more words than a group of haiku can provide, so here we are.
So, a little bit of catch up for those of you who have followed this blog for years and stuck with it even through its dormant years. Remember how I told you all that I was diagnosed as being bipolar? And how I was put on a bunch of different medications because everyone thought that I was bipolar and those medications only made me worse until I lost my insurance and therefore could no longer take them?
SURPRISE!!! I was misdiagnosed in my teens. I do not have bipolar disorder.
I am, in fact, Autistic. (I’m still seeking an “official” diagnosis.)
The diagnosis of Anxiety was spot on though, so at least they got that much right.
If you’ve read any of my recent haiku you have probably already figured out that I have started to seek mental health care again and am on a few different medications now, the latest combination does seem to be helping.
Unfortunately, the timing of me restarting therapy wasn’t all that great. I had just reentered the world of mental health care when the pandemic started to shut everything down. So everything has had to be virtual. So some of my therapy is not as effective as it would be if I could actually meet with my therapist face to face, but at the same time I might not have my current therapist if the pandemic hadn’t have shut everything down because that’s when she was able to pick up new patients.
Now to explain the title of this post. Lately I have been in my “I Hate Everything” mood more and more frequently. I have named this mood what I have because the words “I hate everything” literally repeat themselves in my brain like some kind of twisted mantra. There are days where “I hate everything” are my first coherent thoughts of the day. Medication is helping with that some though.
It’s been almost 2 and a half years since my husband and I had to unexpectedly relocate from one part of the country back to our hometown, and in that entire time we have been living with various family members. The latest (for almost 2 years) has been in my (rebuilt after the fire) childhood home with my parents and 30 year old (also Autistic) brother. That’s 5 people in a small house with thin walls, where my husband and I have shoved as much of our lives as we can into a tiny room (it’s basically dorm room living) and there is only one bathroom. It’s been challenging to say the least.
My husband and I were on track to really get our finances in order and try to find a way to afford to live on our own again in this stupidly expensive state… And then the pandemic hit.
My husband is considered an essential worker, helping to build and deliver medical supply trays to some local hospitals, so we still have his income coming in which I’m grateful for. However, trying to keep this household stocked up when there are shortages has been way more expensive than I anticipated. It’s been quite frustrating.
I am in no hurry to get everything reopened though. We are still in the middle of the first wave of this pandemic and it is still not safe.
Which is where my “I Hate Everything” mood starts to come into play.
Because there are plenty of people that don’t understand that reopening things doesn’t mean that the virus is gone and you can go back to doing whatever you want to without worrying about getting sick/inadvertently getting someone else sick. So reopening now, or in the next few days just seems incredibly risky to me.
And then there are the people, some of them politicians, who think that we should treat this like a “survival of the fittest” situation. That if this virus kills off the old, sick and homeless it will “solve a lot of problems”.
I. Hate. Everything.
What I hate the most though is how this pandemic has fundamentally changed me. I don’t know if I will ever feel safe in public spaces again. I was already agoraphobic before this, so this has not improved things on that front. I would like to be able to go out and do things again, but I think it’s going to be a long time before I’m truly comfortable, if ever.
So, I feel trapped, especially in current living situation, but I don’t feel safe going anywhere.