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“That” pattern

~ gypsy116toast2001 ~ Leave a comment

Someone that I know died recently. I know, not really the polite way to start this but I figure I might as well cut to the chase. I don’t want to talk about this person specifically. I didn’t know them well enough. They have family, loved ones, that story is theirs to tell, should they choose. What I want to talk about is the effect that this death is having on me.

Deaths occur in the periphery of our lives all of the time. Someone we knew from school. Someone we used to work with. People we knew from various places and various times throughout our lives. Deaths we hear about in the news. Even the deaths of celebrities. These deaths impact our lives in varying ways. At least, for me, I know this to be true. Some hit much harder than others. This one has me slayed.

The first place my mind goes, anytime that I hear of a death, is the family. I imagine the anguish they must be going through. This is particularly difficult for me if there are children involved. This death is no different. As intensely as I feel all of that, it isn’t what I want to talk about. While it hasn’t been said directly, it appears that this death was a suicide. I’m triggered by this.

I’m no stranger to suicide. Having spent more then half of my life mired in suicidal ideation, and knowing others who have completed suicide… family members… Others on the periphery…

A significant number of these people had reached out to me in some way. Some to ask directly for help, others asking for support but in ways that were more subtle. This person included. I helped in what ways I could within my own limitations. I’ve experienced guilt in each of these instances. If I hadn’t let my own issues, my own fear, social anxiety, my own whatever interfere, perhaps I could have been better able to help.

Sitting here today, I realize that I am also experiencing survivors guilt. Like I said, more of my life than not, has been spent in the agony of depression, despair, hopelessness and suicidality. I have a deep and visceral understanding of what it feels like to want to die. To not be able to see your way past the pain. To want freedom but have no means of escape other than ending you own life. I know what it feels like to attempt to end your own life.

I also know what it feels like to survive. I was fortunate enough that my attempt was only that, an attempt. I am fortunate enough to have lived to see the other side. I no longer live in a state of perpetual pain, not in that way anyway. My life is far from perfect. There is a lot of shit that I deal with, especially with my physical health. That said, I have healed and thus know that healing is possible, in many ways.

I am feeling guilty for this. Why do I get to live, while these others do not? Why was I able to move past all of that? Why was I able to release myself from that hell? There’s nothing special about me. These people deserve healing, freedom, as much as I do. Why me? Why not them?

I was able to survive. Does that mean that I have some special knowledge that I could have imparted? Could I have helped? Did my own selfish focus on my problems prevent that?

I know that you cannot save another person. I do know this, but I’m feeling guilty for not trying. But what do I think I was going to do? Be such a good friend that they would no longer want to die? That’s absurd. No, more likely I would’ve given of myself to an unhealthy degree trying to ensure that they could not kill themselves. That is my pattern, isn’t it? Trying to save others, no matter the cost to myself? That is where my focus should be. Healing that is the only way that I can ever affect any real positive change. The only way that I can truly help anyone.

Progress Report

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I am aware that I dropped my mom’s being in the ICU here and then disappeared. For anyone who may have read that post and/or may be concerned, I wanted to let you know that as of yesterday, she is home. Her hospital stay was one complication followed by another and I have had and still do have my reservations about her being sent home. I’m of the opinion that she would have been better served by being admitted to a rehab facility temporarily before coming home. To say that it’s been stressful is more than an understatement. As of right now though, she does seem to be doing alright. She is weepy, in an exhausted, I’ve barely slept in two weeks but grateful kind of way, but she’s doing fairly well.

Since I’ve been up, she’s told, through tears, how grateful she is for me. She’s done the same with my partner and says when she talks to my sister, she’ll tell her the same. I bristle, unsure how to react, every time she does this. I’m not used to praise or any kind of positive acknowledgement of my existence coming from my mom. I’m used to something more akin to criticism, disapproval, judgement. I want to encourage this positive development but it’s uncomfortable and you know, I don’t trust it. We don’t have that kind of relationship. I don’t know how to respond.

I’m not doing great, in general. It’s hard to explain. COVID-19 has once again left it’s mark. I feel the same way that I did after I had it the last time, only not as intense. Last time, I couldn’t move, everyone had to help me. This time, I technically can do things for myself, so I do. I don’t think I actually should. I think my body needs far more rest then it’s getting. The people around me aren’t jumping to help me. They see me up and moving about and assume I’m fine. The problem though, really, is me. If I can technically do something, I do it. There isn’t enough energy to go around. I won’t ask for help.

One last thing. Currently, I see two therapists weekly. Therapist number one for trauma. Therapist number two for autism related concerns. I cancelled my appointments with both of them the past two weeks. I’m contemplating cancelling again. I’m also contemplating telling therapist number two that I need to take a break for awhile.

I don’t know how to explain the effect that appointments have on me. My entire body becomes both tense and activated. That alone is exhausting. On top of that, sleep becomes almost impossible after a session. My mind wants to obsessively follow every thread of conversation that was had. I can’t stop or even slow the thoughts. I’m exhausted. I don’t know that two to three appointments a week is sustainable right now. I don’t have the freedom to rest enough to make it feel doable. I’m just so tired.

~ gypsy116toast2001 ~ Leave a comment

I want to ask anyone that reads this to send love, light, good vibes, juju beans and/or prayers to my mom. Whatever it is that you do. Whatever it is that you got. As long as it’s positive and healing, it’s appreciated.

My mom had knee replacement surgery last Wednesday. She’s been home since Thursday. Her knee seems to be doing well but she’s been having other issues. She’s now in the ICU with a blood clot in her lungs and scarily low sodium levels.

I do know and understand that our medical system can and does save lives but with the way that it’s set up, oftentimes it does more harm than good. It feels like a conveyor belt trudging along, patient in, patient out, as quickly as you can. This assembly line process is further hampered by bureaucratic bullshit and many physicians who assume that their medical license e makes them all knowing demigods. The system is not set up to hear patients.

In my personal life, the stories of people injured by our medical system in ways that could have easily been prevented had someone simply listened to the patient and gave them the benefit of the doubt are myriad. Like hey, maybe because it’s your body, you might have some useful input. I know someone who was sent home from the ER with medication for a migraine, after telling the doctor that they’ve had migraines their whole life and this doesn’t feel like one, only to have a stroke. Someone else who made repeated trips to the ER… It’s just the flu, nope an issue with their thyroid that caused brain damage. A young woman who died after thyroid surgery. She complained that she couldn’t breathe. They gave her anxiety meds, she was hemorrhaging. I could go on and on.

Myself, specifically, was sent home from the hospital when I had my son, after repeatedly saying that I didn’t feel right and thought I should stay. I was sent back two days later with postpartum preeclampsia. I could have easily died. I went only went to the doctor for severe constipation. I had no idea that blood pressure was sky high.

I’m writing this to ask you to send my mom love. I truly believe that healing energy helps. But I also want to spread awareness about the importance of listening to yourself above your doctor when something feels wrong in your body. My mom has been complaining about symptoms that didn’t seem right to her since she had the surgery. No one listened. I’d like to say throw a fit but I know from personal experience that that may not be enough. My partner threw a hell of one after my C-section, they still sent me home. My advice? Threaten legal action. Keep screaming until someone listens. Your life may be on the line.

Contradictory Juxtapositions

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Man, I am full of contradiction today. Just a jumble of juxtaposition.

I’m fairly certain that I’m coming off of the tail end of covid. I say fairly certain because I know that I had an exposure but it was a roundabout kinda thing after which I had an uptick in allergy like symptoms. Nothing horrible except that I was really dizzy and dead fucking tired.

Because of the nature of the exposure and the mild nature of the symptoms, I felt like I was sick but it didn’t seem to make sense that it was covid. Now though? I feel like I did after covid. Not quite as intense but the effect is the same. My chest is heavy, it’s hard to breathe. I’m having chest pains. My back hurts. I have no energy. Symptoms from my chronic illness are increased.

My initial thinking was, well, at least I didn’t get as sick as last time. I was so sick. And you know what? I am grateful I didn’t get that sick but… There is a part of me that is like man, fuck that. If I have to deal with the consequences of having covid, then I might as well have gotten really ill. At least then people acted like I was sick. At least I was allowed to rest. As is, everyone treats me like I’m fine, no matter how awful I say that I feel. I’m not. Fine.

Here’s what’s really bothering me today. The increase in heat intolerance. I realize that I haven’t really gotten into the symptoms of my illness here. Maybe I will someday, maybe not, but heat intolerance/an inability to regulate my body temperature is one of the most significant symptoms. It impacts every second of every day of my life. It also greatly impacts those around me.

The way that this symptoms shows up in my body if beyond difficult to explain and impossible to understand if you aren’t, in fact, inside of my body. I could say that I’m hot all of the time but that isn’t actually true. Though I do need my environment to be cold to function. We basically live inside of a refrigerator. I could also talk about the ways and the things that raise my temperature but you’d hear it through your bodily experience. You’d think, yeah being hot sucks but what’s the big deal? Being hot isn’t the problem. The way that my body reacts to being hot is. I have no words to explain this.

For now, all you need to understand is that I am unable to regulate my body temperature and I need my environment to stay cool so that my other symptoms don’t become life threatening. Also, that as much as it doesn’t make sense, this symptom (along with all the others) is much worse in the winter. Most of the other people I’ve come into contact with this symptom, the opposite is true. They have more difficulty in the summer.

That seems to make more sense, I mean summer is after all, hot. For whatever reason though, summer is easier for me and I typically do better outside. I’ve been able to go to the beach on a hot day. Provided I had plenty of food and water, I did fine. The affects of covid change that. Currently, I can’t go outside for very long without becoming weak and nauseated.

Awhile back, my sister and I were talking about this paradox. I was saying that I am so grateful that the heat intolerance is worse in the winter. It sucks, like really fucking sucks because winter is so much longer than summer and our house, well, it has to be really fucking cold but…. If I wasn’t able to spend time outside. If I wasn’t able to go to the lake and go swimming… That’s when life becomes not worth living.

It’s really hot this week. My sister and I had talked about taking the kids to the lake. I don’t know if I’ll be able to do it. Pray for me. Pray that my recovery from this round of the hell that is covid is swift. Pray that my mermaid soul is able to spend time at and in the water where she belongs.

One last thing. I’m feeling really angry and a bit bitter towards my mother. The exposure, in it’s roundabout way, came from her. She spent time with family from out of state…covid ensued. I understand that it isn’t logical. She didn’t do anything wrong, just hung out with her sister who she hasn’t seen in like five years but… There is a pattern here. One in which my mom makes hurtful decisions that involve her loyalty to her family of origin over the family she created. This triggers me.

Illogical. Juxtaposed. Contradictory. Feeling hopeless but holding onto hope. Yeah, just pray for me…

Bam, reduce your junk mail

~ gypsy116toast2001 ~ Leave a comment

I just started reading How To Give Up Plastic by Will McCallum. I was surprised to realize that I already do some of the things that they recommend. Such as using a reusable water bottle, rarely eating out and using plastic utensils/straws/food containers, using a shampoo and conditioner bar wrapped in compostable materials. Now, that I’m thinking, I also use bamboo toothbrushes that are also compostable.

Anyway, the point is that I am and have been making changes and I’d like to share them here. So… I found out (not from the book, I can’t recall where) that you can register to reduce the amount of junk mail that you receive, and I wanted to leave that link here. You just register and pay five dollars for processing and bam,10 years of reduced junk mail.

https://www.dmachoice.org/register.php

Ovulation Blues

~ gypsy116toast2001 ~ Leave a comment

I’m feeling sad today, or no, more accurately, I’m feeling sad right now. Today I am feeling all kinds of emotional and my mood is all over the place because I’m ovulating and apparently, at least for this month, this is what it does to me.

I don’t really get it though. I’m ovulating. My body, my hormones obviously want me to have sex (oh, yes they do) because the whole idea is that I have an egg and biologically we want it fertilized (biologically only. I in no way, shape or form want more kids. I love my son but… I’m Good), right? So…. Why make me wanna curl up in a ball and sob? Doesn’t seem helpful. Hormones, what do you do?

Apparently, my grandpa died five years ago. I know because a poem I wrote at that time came up in my Facebook memories today. No need for condolences, it wasn’t that kind of death. My grandfather was a narcissist and a womanizer and a child molester. No, that’s not what is bringing up the sadness. What it does bring up is the confusion I felt at the time of his death.

The Patriarch

Confusion bleeds
As invisible as the wounds left
By your hands upon my skin
My sadness repulsive
Tears staining my face
Despite my own disgust
Your death
Inconvenient
Causing guilt
To stain my conscience
Saturated in filth I cannot cleanse
Unlike your hands
Washed clean
All of the ghosts you’ve disavowed
Buried in shallow graves
They haunt me
This scarred lineage your true legacy
And yet I am surrounded
By your false image
And all of this grief

I think maybe, a long with pain and trauma, confusion is one of the biggest legacies left behind by abuse of any form. I’m reflecting on that today. My whole life has been shrouded in confusion. Confusion in the wake of abuse. The confusion of a child. Confusion stemming from being if a different neurotype and not knowing it. The confusion of not understanding my place in this world.

I still don’t… understand my place… But I’m working on it… And I have more pieces of the picture that is me…. And maybe that’s all that really matters. And maybe for the moment, I just need to grieve for that little girl with none of those pieces. I just need to be sad.

I’m autistic, yo!

~ gypsy116toast2001 ~ 3 Comments

I recently finished reading The Autistic Survival Guide to Therapy by Steph Jones.

Man, reading this book was like reading about my life. Like, hey Steph, are you sure you weren’t a fly on the wall in like all of my therapy sessions, with all of my previous therapists? Memory after memory kept coming back. I wish that I could say that they were good ones, but….

Unfortunately, they were more along the lines of that time my well meaning therapist would stop interacting with me in conversation until I made eye contact. Her assumption being that my lack of eye contact was shame based. Nope, I cannot find words, verbalize language, when I’m doing something other than speaking. That definitely includes trying to make eye contact. Or how two separate therapists restricted my use of the phrase “I don’t know”. Again, this was assumed to be shame based or a form of avoidance. Nope, I literally did not know… Their questions too vague and open ended. I need specificity. Come on now, I’m autistic, yo!

It brought back all of the ways that therapy had failed me. All of the ways that I thought that I had failed at therapy. After more than a decade of failed attempts, with at least 6 separate therapists, I assumed that I was not meant for therapy. That there was something so wrong with me that no matter how hard I tried, I was destined to fail.

Recently, I did decide to try again. I’ve been back in therapy for probably getting close to a year. The reason being that my naturopath recommended EMDR. If I was going to go all in on this healing physically thing, I needed to give it a shot. That along with this fear that I had. As much as I wanted to heal, who would I be on the other side? So much of my identity is tied up in being sick. Who am I? Did I ever know?

Enter autism. My missing piece. I don’t think I want to get into how I discovered that I am autistic in this post, it’s going to be long enough already. I’ll save that story for another day, but here’s what’s important to know right now. Even though I’ve known for almost a year that I am autistic, it’s been a struggle to accept that (again, reasons for that, another day, another post).

I’ve spent more time then I care to recount going back and forth in my head over the validity of the idea of my son and I being autistic. At this point, I no longer question it. I am autistic. So is my son.

While I am on a waiting list for a professional assessment right now, in the mean time, I am seeing a therapist who is also autistic. They have confirmed their belief that I am autistic. This along with all of the research I’ve been doing has been extremely validating. Honestly though, I didn’t get to full acceptance until reading this book. That is how spot on it was regarding my experiences with therapy. It highlighted so much of my life that I was finally able to say, yes, without a doubt, I am autistic.

Here’s the thing though… I already knew… I always knew. I just didn’t know what it was that I knew. I can’t count the times that I’ve tried to explain it to someone… “Yes, I struggle with anxiety/social phobia/depression… But… There is something else”. I’ve said that so many times it makes my head spin thinking about it. I didn’t know what that something else was but I assumed it was the thing that was broken in me. That if I could figure that out and fix it, then I would be able to function like everyone else. Then I would be healed.

Had I understood that it wasn’t something that needed to be fixed. In fact, it’s not something that can be fixed, but instead my neurology and there’s nothing wrong with that. There is nothing wrong with me. I may have been able to save a lot of pain. For myself and those around me.

If I had gotten a diagnosis as a child maybe I wouldn’t have used an eating disorder to feel some kind of control over my life. Maybe I wouldn’t have turned to drugs and alcohol to as a cover for my extreme social anxiety. Maybe the social anxiety would never have gotten so bad, had I known there was nothing wrong with my way communicating and that I didn’t need to change it in order to be enough. Maybe I wouldn’t have pushed myself to the point of burnout and self harm and suicide attempt or multiple daily meltdowns, had I known.

Maybe, maybe not but… I whole heartedly believe that had I known that my way of being in the world was not wrong, only different, I could have found a way to accept myself. If I understood that I am not neurotypical and there was no amount of healing that would change that, I could have found a way to live a life that took my limitations into account and focused on my strengths. Perhaps I could have thrived instead of fallen so ill.

Education about autism and it’s myriad presentations is important. Diagnosis is important. Listening to autistic people and their experiences is so important. As a society, we are failing so many people like myself, people who fall though the cracks. Keeping this conversation going and sharing our stories is important. I invite you to share yours, as well.

Can’t, not won’t

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PDA (Pathological Demand Avoidance) mom rant incoming…

When my son and I wake up each morning, we spend some time in bed, cuddling and talking, before we get up to start the day. This morning, I mentioned that today was going to be cooler. My son’s immediate response, “no, it isn’t”. I started to explain a bit but was again hit with immediate denial and a bit of emotion.

“Ok, baby. I thought it was but I guess I was wrong.”

Period. End of conversation.

We go upstairs and my mom mentions the weather.

“It isn’t cold” Anger. Panic.

Grandma proceeds to push.

“Alright Mom, drop it.”

She knows he is PDA. She understands what this means. She continues to push. She needs to be right. It is in fact cool outside.

I snap and yell at her.

Why are we arguing with a four year old, period. A four year old with a nervous system disability….

PDA isn’t easy for caregivers but… It’s much harder for the child experiencing it. Every choice we make as caregivers either activates his nervous system or accommodates it, helps him to regulate. He doesn’t get a choice. He is just constantly in fight or flight.

There are decisions that are difficult to make. When and how often to push for him to take a bath, change his clothes, try a new food… But this… This was not one of them.

It is cool outside. I know this. My mom knows this. Accommodating a four year old with a nervous system disability by stating they opposite? Not a big deal.

I really hate living with other people.

No Impact Man

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I finished reading No Impact Man by Colin Beavan. I am sobbing. I’m talking full on body shaking, convulsing, cathartic sobbing.

When I was looking through the reviews for this book on Goodreads, I was surprised. While it received many more positive reviews, there were a surprising number of one star ratings, complete with negative reviews. There seems to be a lot of criticism of the author himself for not initially knowing seemingly simple solutions to eco problems (like diapers or tissues) and writing about his personal revelations during the project.

I do not agree. The point of the project, of the book itself, was for Colin, a regular dude and his family to reduce the negative impact his family is having on the environment as much as possible. The point was to figure it out as the project progressed and write about the impact that had on him and his wife and daughter. To me, it seems, mission accomplished.

Regardless of whether or not you liked the book or the author himself, it does highlight things we should all be concerned with. Is the life you’re currently living, the life that you truly want to be living? Do all of the things you do and buy and consume and support really make your life better? Is this way of life that we are living worth our health…our happiness…our fucking planet?

For me, the answer is no. I need to start to do things differently.

Traumatic Therapy

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I sent this email to a former therapist of mine earlier…

“Hello, 

I know it’s been some time since I was in therapy with you but I’m feeling  the need to share with you a couple of recent revelations that have taken place in my life. I feel that knowing these things prior to engaging in therapy would have been helpful, and I wanted to share on the chance that they could possibly be helpful if you encounter similar clients in the future.

In the past couple of years, I’ve come to discover that my chronic illness was in part caused by chronic exposure to toxic mold. I’ve been diagnosed with mast cell activation syndrome. You had insinuated time and again that if I did more, I would be able to do more. I now have a four year old son. Raising my son has forced me to do a lot more and I became more and more unwell, the more that I had to do, until I ended up in the hospital. Without the mold piece I was never going to be able to progress further with my health. I’ve been out of the mold for about a year and a half and I am just now seeing real improvement. I’m able to eat regularly (not every few hours and through the night) and am beginning to tolerate heat a bit more. 

The other thing, I’ve recently been diagnosed with ASD. After realizing that my son was displaying some autistic traits, I did a lot of research and realized that it was likely that myself and many members of my family are autistic, prompting me to seek assessment. I don’t have a lot to say about this other than that I can now see how a lot of issues I experienced in therapy with you were due to my being undiagnosed autistic. It may benefit you(and most clinicians) to do a little research in order to gain a better understanding of autism and the myriad ways it can present. 

Thanks for you time,”

This therapist was incredibly helpful when I was working towards leaving my then husband. After that, not so much. Therapy with this therapist actually became harmful to me in many ways. This is just a reminder to anyone, if something doesn’t feel right to you in therapy, listen to yourself. You know you best. This is especially important, I think, for autistic people. If you have a non autistic therapist and they’re trying to treat you the way they would someone who is neurotypical, it very well may do you more harm than good. Look out for yourself. You matter.