Excuse me, can I have a new fucking brain please?

The freefall of an autistic meltdown...

Yesterday after the usual morning of waking  and giving my body the opportunity to wake up and shed most of the pains that had snuck in through the night (fibromyalgia and a couple of car in accidents in the 20’s do not make for the best of bedfellows), I had done my stretches, attempting to be patient with my body and admonishing myself for not putting the work into actually losing some weight. My ritual of vitamins, journaling and my beloved cup of coffee were in the rear-view mirror of my day and the silliness, which is quite frankly my favorite part of my 53-year-old self-had woken up and was on full display. For those who lost their silliness along the path of maturity let’s just say there were silly lyrics being made up on the fly and sung, off tune, accompanying what I love to refer to as dance, but middle-aged white chic with no rhythm appearing to have a seizure is a more apt descriptor. Needless to say, there were more than one occurrence of my husband shaking his head, whilst trying to work, with the comment “I do love you” whilst trying not to laugh. Now, this was not totally out of the blue as our new gazebo kit was being delivered and having something to assemble for me like being told peanut butter chocolate ice cream was now fat free, despite having retained its original splendor on the tongue! Delicious. I spent the next hour or so continuing with my shenanigans and actively preparing for its arrival. Cleared the piles of garbage awaiting their ride to the local dump and neatly stacked against the fence clearing a path. Moved all the seating and the firepit out of the way so I would have room to work, noticing that moving the fire pit on the new composite tiles we had installed how much easier it was.

 As I did not know when the delivery would occur during the day, my next task was to start the assemblage of all the smaller bits of accoutrement that arrived during the week, that either needed assembly or the packing wrap removed. Seriously, if Ikea was closer, they could hire me out to assemble shit for them as I love it all, probably because my autistic brain loves putting shit together and the tedium that accompanies it as it gives me time to daydream. I swear I am part dog as I could hear the familiar rumble of a delivery truck a block away, my ears perked up. Sure enough, the huge ESTES truck with its bright yellow logo started to round the corner. A literal eeeek of joy could be heard if anyone had been listening and I bounded off the porch to welcome them, or rather him. Despite our packages 487 lb. pallet load, these guys have the legit forklifts onboard that make short work of relocating to our driveway. I do have to point out here that knowing its weight in advance I had pictured something much larger. As efficiency has always resonated as the sexiest word to me, I started to commend the company for such efficient packaging. Despite the long pallet below, both boxes amounted to about 15 inches over the height of the pallet. Keep in mind this was a 10’ by 12’ gazebo with 5” cedar legs and steel panels for the top, so the lack of wasted space was impressive, even if you are not a packaging nerd such as myself. After chatting with the driver for a few minutes and waving at him as he continued his Santa-like deliveries, I ran to get the boxcutter to remove the cardboard and really get a look at everything. I was not wrong, the number of cardboard inserts was minimal and I could see all of its parts with ease and realized as I lifted the first beam out of its next – holy shit I can so put this together myself! I mention this simply because earlier, post coffee, when I had reminded my husband it was arriving, he told me OK, but I really need to work on cleaning the garage as well. Instead of launching into a sarcastic reminder of how long that had been on the to-do list often ignored in favor of a nap or diversion, I smiled and thought well, I can always find help elsewhere if needed. I then proceeded to unload all the pieces one at a time, carrying them to the backyard and placing them each is a spot that would be easy to navigate once I got started. I even managed to get all the cardboard moved to the side yard to join with its future dump buddies and rolled the pallet over to free up space on the driveway.

I was so excited to share with my husband that I not only realized that I could put together myself, but that I wanted to. Yes, I would come to ask for assistance if needed, but I was pretty sure I could handle most of it. Another thing I should point out is that I am not the easiest person to work on a labor-based project with. I am a workhorse who has been gifted with a near endless well of energy to draw upon and an insanely high pain tolerance, so I like to push through as long as I can. I have found over the years the people I am most compatible with for these type things are similar minded and while the project is underway, we are ok with having what I know to many others, sounds like orders being barked at them rather aggressively. Although I recognize it seems like I must be the one in charge, as a point of fact if I am the help, I LOVE a leader who operates the same way I do. I also understand that this confuses a lot of people as I do have hypersensitivity disorder, so the fact that I can be barked at in situations such as this one can cause confusion. But for me, if the leader knows what they are doing, I find it quite comforting and do not get butt-sore in the least. On that very subject, I do NOT work well for anyone who is indecisive or lacks backbone as my brain interprets it as an inconsistency and inconsistency is like an invisible pause button for me; my brain doesn’t know how to process it.

Over the next couple of hours, I enjoyed listening to the Bulwark podcast and slowly started on the gazebo, my goal being to get the wood base completed, leaving the metal bits of the roof for the next day. By 4:45 I had the base of gazebo standing and only the supporting side pieces to go and was feeling pretty damn good. Noticing the time I thought, hey! This is perfect time to go to our local store Dahlia & Sage and find something yummy to eat for dinner, I can finish the last part in about an hour, so I asked my husband if he would like to join and he said in effect hell yes, so off we went! Now, despite my being a homebody, once I am out in the real world, especially if it is a place I enjoy, my chattiness ramps up to an almost speed-like addict who is on the precipice of their next fix. I know in part this is the mask I created many years ago to survive being out in public, but there is also genuine enjoyment in seeing others who I enjoy, admire and am inspired by. Having lived in Cloverdale for just over 18 years now and having worked downtown, I know a lot of people. Acquaintances, not friends, but still I have garnered enough data about them over the years as to hold what might appear to be normal conversation, this trip was no exception. I got talking to a beautiful soul I met through our local farmers market about art and a desire to start up an art collective where we could meet and make art in the shared space with other artists (I had told her about the gazebo project when she asked what creative thing I was up to). A truly joyful interaction. I then bumped into another gal who I have known over the years, and her energy is albeit a bit different from mine, equal in energy. This is where the bump, as I will call it, occurred between her and my husband. It probably didn’t even register in her mind as anything other than random in passing banter.  Honestly, I didn’t even register at the time other than a moment of awkwardness and had moved on as we checked out and left the store. As we were driving to the next stop, my husband said something (not relevant in what was said, so that shall remain private) and I responded with sarcasm. Not to be hurtful understand, it just felt like a natural response to what had been said to me, which made me think, “does he think I am stupid?” We made the last stop and although I knew he was annoyed by something I had said, honestly, I didn’t give it a thought. Once home, I put his food on the counter as he had requested and put mine in the fridge, so I could go out and finish the last hour of work. I popped in once to grab a needed item and heard him on the phone with his mom (who has dementia) and I made the mental note to be kind when I finished as some of those calls really can be emotionally draining and I wanted to be supportive. Now, I mention this next part merely as layers of what was happening in my head whilst working on the last bits. I had been thinking about the art conversation and how if my husband wins the lotto his dream is to buy a building downtown and convert it into an art space with above living for the artists. I thought well, while we wait to win lotto or make enough money somehow, that starting the art group on our property was like planting seeds for that future dream. Once the last piece got attached I started to figure out where best to line up the gazebo as once the roof was on, moving it wasn’t impossible, but harder. I went inside to ask my husband’s opinion which I am working on doing more often. I don’t know if it is me or my autism, but I have found through life I rarely feel the pull to ask another’s opinion on something I am working on. Indecisiveness is not something I suffer from, so it just doesn’t make sense to me. Anyhoo, I went inside feeling proud that I had thought to ask and would ask if he needed a hug after his call with mom, as those calls can be so triggering.

I know one does not need to be autistic to understand this next part, as all humans I imagine walk into conversations thinking they have the slightest fucking idea as to how it will go to find out they were in fact, 100% wrong. That being said, the reason I am sharing in the way I am (long and detailed) is that for many autistics all of the details are equally important and as I rely on them to help me navigate neurotypical people, when I am wrong it is like an emotional landslide and one, I have little control over. Not only did my husband not need a hug as the call had been fine, but he needed to tell me how much I had hurt his feelings with my sarcastic response in between stops.  It is hard, even in my long-winded way of writing (or as my husband calls it my stream of consciousness), to describe the assault of emotions when I feel attacked, and I did. Was he wrong for saying this to me? Absolutely not and part of why I cherish my husband is that he is an emotionally available guy and that is in large part exactly why I married him. But knowing that and using the data to help regulate my emotional responses does not exist for me in real time. I am my father’s daughter, so sarcasm is my second language, and I have the memory of a steel trap, so the second I feel attacked, every slight that individual has ever laid upon me comes rushing to the forefront of my brain wanting acknowledgement. Now, this is an area I have made some progress in. Typically, what flies out of my mouth is relevant to the subject on hand but is still a defensive response before I take ownership of the slight I have inflicted. The fact that so much of my day had actively been acting in a way that would benefit my husband is completely irrelevant. Not because I was doing it, but because he is not psychic and has no idea how much I have been altering my day to his benefit, which renders it mute. So after a few minutes of back and forth, a calm enough spot in the storm had been reached that we agreed to start watching the show we had earlier agreed upon. I do wonder sometimes if the Great British Baking Show knows how many relationships it has helped? I excused myself to go change and try and stop the assault of tears and get myself to a place where I could breathe through my nose again.

I was able to get relatively stabilized and figured the show would help the distress pass, but alas it did not. A few times during the hour show I had to grab more tissues and stanch the seemingly endless flow of tears as the rage and hurt started to seep in. Every word written thus far has led me to this moment; an autism meltdown and what that can look like and feel like, because that was apparently what my brain needed to happen. My brain also decided it needed to take me hostage for the rest of the evening, through the night and was awaiting me when I awoke this morning. By the time I went to bed the first time, my grapes unfinished (my bowl of grapes I have whilst reading is one of my dearest joys in the day), many tissues destroyed and I had realized what was happening and although I was only diagnosed over 2-years ago, I have learned once it hits, I have to ride it out. There is no combination of peanut butter and chocolate on this earth, room full of kittens or monkeys wearing a fez passing out samples of cheese that will stop the ride. Surrender is the only way through it, so I did. I tossed and turned, finally got up again at 4 am and took more Tylenol pm to help me as I knew I needed actual sleep to safely finish gazebo later in the day. I plowed through a peanut butter chocolate treat I had purchased prior day, with zero joy in it.  I went back to bed just after 5 and managed a few hours of sleep. I awoke before 9 and after doing my stretches so the pain that had settled into my body would ease up a bit, noticed a crying headache had decided to join the party. Awesome. Now my husband knows how important my first half hour is when I get up, so I don’t get derailed for the entire day, and he was 100% respectful of that. But I also knew I needed to acknowledge him out loud and I was fighting the next wave of tears. I managed to do that as well as prep my coffee and make it to my desk before the next way fully hit. I also had peace of mind to text my husband and let him know a little bit of what I was going through so he would understand it wasn’t him causing it, which was true.

I sat at my desk feeling so defeated as the tears poured out. Now of course I can only speak for myself here, but until one has experienced an autistic meltdown you cannot truly understand the whole mind and body encompassing of grief that threatens to swallow you whole. It does not matter that you intellectually know what is occurring. There is no medication that will impact it in any way. I think for myself one of the most frustrating parts is that although I know my natural well of optimism and energy that is usually in some way accessible, has abandoned me. Everything hurts, literally. Walking feels like I am traversing a room temperature tar pit neck deep. Those are the easy parts. It is the full-blown assault to the psych that feels like I will never be ok again. Every god damned memory of 53 years comes to the present as if they have just occurred of being told I am too sensitive, I am too much, why can’t I just be…fill in the blank. It is such a vicious assault, and I would be lying if I didn’t admit the thought of the world would be better off without me didn’t raise its petty fucking voice wanting to be heard. It is as if I have turned into Queenie Goldstein from Fantastic Beasts, but instead of hearing everyone else’s thoughts, they are all MINE and I do in fact feel for a moment that I am going insane. No matter how many books I read that explain what is happening, other autistics I talk to who totally get it, rituals for calm, candles, crystals, magic eight balls, or on my knees praying, eases the discomfort whilst it is upon me. Luckily, they do not occur too often. I am blessed beyond measure that I am in a financial situation that no longer requires multiple jobs to cover base expenses. I have a husband who respects that the greatest gift he can give me while experiencing is the space to let it process and trust when I tell him it is not his fault, because it isn’t.

Why I sat down at my computer amidst the tears this morning is I realized the only power I have over these meltdowns is to share that they exist. To share my experience in a raw and honest way, perhaps someone who reads will know they are not alone. Or perhaps someone might read who has a loved one that experiences, and it will help them to better understand. If nothing else, it gives me an outlet to say it out loud and perhaps deprives it of some of the oxygen it needs to hold on. Because I do know unless a medical miracle occurs that can stop them in their tracks, there is no amount of keeping myself safe that will stop them completely from happening for the rest of my time on this earth and perhaps by sharing in detail how they feel, it will act like a nightlight for a child scared of the monster under the bed, it doesn’t remove the fear, but makes it palatable enough to believe it will pass. But I would be lying if I didn’t think to myself sometimes, I would literally give my soul away to have a new fucking brain and an opportunity to experience the world as neurotypicals do, even if just for one day. However, until that opportunity arises, I have a gazebo to finish assembling and maybe just maybe, I can leave the tissues inside.