I had a dream. It was a few years back and in this dream an angel came to me. This angel told me that if I did not heal I would die young but that I wasn’t meant to. That I needed to accept help, that my healing world require help from others. The angel also said money would be involved but not too worry about that.
Because of the money part of the equation, I had assumed that the help was meant to come from those in the helping professions. While I do still think that’s partly true, I know that isn’t the only help that was meant. Balance is a constant struggle and I require assistance from those around me, both because there are things that I’m not capable of doing for myself and because the little energy I have is needed in my healing process itself. I know I’m not alone in this experience.
So, what do you do when your caregivers are at the end of their rope? When either their life is full with their own tasks of daily living or they overextend themselves trying to help others who may or may not be their responsibility? What do you do?
I can’t speak for others but I feel a tremendous amount of guilt. It is not my fault that I am sick and I am doing my level best to heal but I feel like a burden and there is truth in that. My loved ones will deny that, over and over, but in truth, whether we want to use the word burden or not, my existence causes a hardship for those around me. It does.
Caregiver burnout exists. Mistreatment and/or abuse by caregivers exists. These things are commonplace and as deeply personal as this reality is for me it is not a me problem. This is a societal problem. Any system that requires it’s participants give their all to and rely solely upon it is doomed to fail. We know this. I don’t pretend to have the answer but what I do know is that we are human. We are mammals. We are pack animals. We survive through tribe. Through pack. Through clan, group, family. We survive through community. What ways can we begin to slowly bring our centers back into community? I’d love to hear your thoughts.
I mentioned recently, that I used to have an official diagnosis of Borderline Personality Disorder with Avoidant and Obsessive Compulsive Personality Disorder traits. I don’t know about you but to me, that diagnosis screams autism.
Of course, it isn’t easy to get an autism diagnosis. The misinformation and misunderstandings by society alone are widespread and it isn’t just society. Many, many, many clinicians supposedly qualified for autism assessment and diagnosis hold these same beliefs. Most clinicians have no training on autism and no idea how it can present.
My being female and not presenting as the “autism stereotype” made it very unlikely that anyone would see my behavior as stemming from autism. Add to that, at the time that I received this diagnosis, I was in a state of extreme burnout and having violent meltdowns daily (or multiple times a day). Borderline Personality Disorder it is.
Now that I know that I am autistic, this brings my former diagnoses into question. Did I ever have a personality disorder (or 3?), or was it all unrecognized autism? I know that some people, after being diagnosed with autism, still identify with their previous diagnoses. They feel it still pertains to their life and mind. I’m not sure that I do.
I currently do not meet the diagnostic criteria for Borderline Personality Disorder although at the time, I did. I never did meet the criteria for OCPD or AVPD, hence the diagnosis of traits. Having just looked up the criteria for their diagnosis, I can say, quite firmly, that the reason they didn’t fully fit is because they didn’t fit at all. The symptoms my therapist was attempting to attribute to the traits of those personality disorders were all autism. So, what about BPD?
Here is where things get a little tricky in my mind. Like I said, I did meet the criteria. I was nine for nine, in fact. Not only that but I related, heavily, to the diagnosis but… I do not anymore.
If I go through the criteria and look at the ways these symptoms impacted my life, I can see how they could have been caused by being undiagnosed autistic and existing in a world not created for or accepting of my natural ways of being. To me, it seems obvious that living in a world that invalidates your very existence at every turn could lead to things like an unstable sense of self, chronic feelings of emptiness, shit, even self harming behaviors… But does that mean that I had a personality disorder? Did the trauma of being undiagnosed autistic cause a personality disorder? If so, where did it go, I don’t have a personality disorder now? Or did my autism present in a way that was similar at a time in my life where I was way beyond my limits? Does it even matter?
The thing is, autism exists physically, it is a difference in brain structure. BPD is just a construct made up of symptoms that have a negative impact on a person’s life and relationships. I could say that I used to have Borderline Personality Disorder and now I don’t. That’s technically true but I think it’s too complex, people are too complex, brains are to complex, life is too complex…I am too complex to be able to ever take a stand that is that black and white.
What I do know is that not realizing that I am autistic until my forties, living life as a seemingly failing neurotypical, has caused significant amounts of trauma (hello, can you say understatement). I do know that I am not the only one (far from it) to be impacted in this way. So, I suppose this comes back to what it always seems to come back to for me. That is the need for better education and awareness around autism and the myriad ways it presents. If you are able to, tell your stories.
What do you think? Did you have diagnoses prior to your autism diagnosis? Do you feel they were accurate or misdiagnosis? What was the impact on your life?
This morning I woke struggling to breathe, suffocating under a cloud of panic.
I was dreaming that there was a tiny kitten, like smaller then a mouse tiny, running around my house and my cats were trying to kill it. I was panicking in the dream so waking in a state of panic seems appropriate, except that I wasn’t panicking about the kitten. I went straight from dream panic to wide awake with the thought that we need to get gas masks, followed by the need to be prepared in other ways. Given recent events, I’m not surprised that the need to feel prepared was at the forefront of my subconscious.
All of this quickly translated into guilt. How could I bring my son into this world when it’s falling apart? I don’t mean to be all doom and gloom. My beliefs actually aren’t but this is once again bringing up the subject of balance for me.
I’m struggling to find balance in my personal life, especially in the area of being a mom and healing. Like I said, while the world does feel unsafe and we do need to face those things at the root head on, my personal beliefs are filled with faith and hope. How do we find balance in this current culture? How do we know how to best prepare our children for the world we live in? How do we hold hope in the midst of chaos without totally going under?
Woah. I’m sitting in my bathtub, brushing my hair while it has conditioner in it and I’m listening to music. A song starts playing that reminds of a very unstable time in my life, both because of content and the fact that I would have listened to it back then. Unstable more in a relationship way then a just me off the rails type of way.
Anyway, I’m listening and I’m singing and I’m overcome by a feeling if nostalgia. Like I am literally experiencing a longing for that time. Now, there were definitely good times then, life is complex, it’s never all bad but … That is not what I’m feeling longing for. There is some part of me that misses the intensity, the drama of that life. WTF? Trauma is wild.
Having been sick for so long, I’m not surprised by the feeling of missing a time where I felt much more alive. I also had better access to my emotions at that time. Like a lot of people, in attempting to heal my emotional instability, I’ve swung too far in the opposite direction, I’m all bound up. I’m aware of this. I’m working on it. It is interesting that this part isn’t longing for a future where I can feel my feels in a healthy manner but instead a past that was intensely painful. Huh? I think I may need to do some inquiring as to the needs of that part of me. Interesting.
Upon my return, my dog’s greeting would seem to indicate that either, I am the most important, awe inspiring human being on the planet, or this occasion, my return, is the greatest thing that has ever happened in her life.
I get the same reaction when I get up in the morning. Every morning. It’s like she can’t believe she had to go an entire night without my presence. She wiggles. She dances. She whines if I start to walk away.
I understand that this is what dogs do. When a dog loves someone, they love them with all of their energy. Their entire being. This is typical dog behavior yet, somehow, I have trouble buying it.
When my son was an infant, I often googled (more times than I’d like to admit) things along the lines of – why does my baby love me? Why does my baby love me so much? Why is my baby obsessed with me?
Again, I understand that I am his mom. He’s gonna love me no matter what. The little dude didn’t really have a choice in the matter. Human babies tend to love their mom’s, whether that mom deserves it or not. It’s a matter of survival but …
I had a hard time buying it.
There is some part of me that believes, whole heartedly, that not only am I not worthy of love but that I am expendable, invisible, non existent. Every time some one from my past recognizes me, it blows my fucking mind. I truly believe that I am not memorable.
I can, of course, trace this back to my childhood. I could lay it all out for you, all the reasons I think I came to believe this but right now, I don’t want to. I only want to say that my heart aches for that child. The girl who felt so insignificant in her life and with those meant to love her that she’s carried that belief with her as her foundation of being. My heart aches for her and all of those other children carried in the hearts and bodies of adults who’s still feel unseen.
My sleep has been restless. I fall asleep, mind clear, but clearly my subconscious is obsessed with my writing a memoir. It seems that until I know the details of what I’m writing, the theme, the structure, my mind will not stop trying to figure that out.
Originally, I though I wanted to write an autism memoir. I’m not so sure that I do. Every memoir that I’ve read on autism is information heavy. You know, diagnostic criteria, facts and statistics and what not. I don’t think that’s the book I’m writing.
I’ve always imagined my book to be more, hmm, emotional. I’ve lived many lives. Most spent grappling with my own internal experience. I feel like that’s my book.
I’m not sure exactly and that’s the problem, it seems. Any memoir that I write will be an autism memoir. There are no stories that belong to me that are without autism. There is no me without autism. It’s not like some parts of myself that are singular in their existence in my life. It is my brain. Autism is the whole of me, but… I don’t think this is an “autism memoir”. If not that, if I don’t have that structure to hold onto, then what?
I have a confession to make. I love my son, like more than I could ever possibly describe. He is my everything, but… Right now…I do not want to Mom, like, at all. And that my dear friends, is causing me to feel like a massive piece of shit human.
Here’s the deal, my recent life circumstances made it impossible for me to care for him in the way that I normally would. Thank everything holy, his dad was able to step in and fill the role that is and has been since my son’s birth, mine. The role of primary parent.
The part of me that feels like a massive piece of shit human wants to tell you that I got used to having less responsibility and I don’t want to give it up. The part of me that loves to beat myself up for everything, even the things out of my control, wants to hang it’s (my…our?) head and wallow in shame, calling myself selfish, self centered, lazy, uncaring, heartless, bad bad bad… Bad mom. The truth, I think, is more complicated.
I have, since my son was born, as is my tendency, given too much of myself. I, mostly on my own and chronically ill, attachment/gentle parent an autistic, PDA child. If you don’t understand what that means, I took the hard road without near enough support, in a broken body, with a child who is “extra”.
Looking back, I would not change the decisions that I made in my choices of how to parent but…I was burnt the fuck out before life just knocked me on my ass. *Sigh*. On top of that, the ass kicking that the universe just bestowed upon me, made a couple of things very clear to me. If I want to heal, I have to put myself first. I have to engage in the activities that bring me joy, peace, and help me to process. I have to invest time in my healing. I don’t get to just half ass try and fit healing tools in on the sly when I steal a moment alone. I HAVE TO. If not, my son won’t have a mom at all.
I wrote recently about how I healed the first time that I had a run in with chronic illness. On my own, in a safe space for the first time in my life, I spent my time learning what I needed (that’s key, what I actually needed) and immersing myself in those routines/activities. This is how I became regulated. This is how I healed.
I’m in a tough spot right now. My son’s father will be returning to work soon. I will have to go back to full time primary parent. And this is where I feel like a selfish asshole. I don’t want to. I feel resentful about it. I think that that actually makes sense though and it definitely doesn’t mean that I am a horrible person or mom. It means that I need to focus on healing and I an unsure of how to navigate this. How is it possible to find balance? It means that I’m scared, terrified really. What if I lose the gains that I’ve made? What if I’m unable to heal I’m this circumstance? What if, and I think this is my biggest fear, what if I don’t make it? And by that, I mean, I either become fully incapacitated or I lose my life and… The part of that that kicks me in the teeth, rips my guts out, stabs me straight through the fucking heart..my son doesn’t have his mom.
I feel like I need to be selfish temporarily,in order to ever truly be what he needs. Pray for me. Send me love. All the good things that might help me to figure out this balance. Or advice? Leave a comment below.
I was thinking about writers and how it’s easier to publish a book if you already have an audience, and the need to support those that you enjoy and that brought me to the realization that I totally forgot to do a review for Paige Layle’s book, But Everyone Feels this Way. I read it quite awhile ago, so I don’t really remember the specifics but I do remember what I wanted to say.
If you are unfamiliar with Paige, she makes content on social media speaking about autism. I like Paige. I have from the first video of her’s that I came across. She does , however, have a way of sometimes coming across as if her opinion is THE truth. I find that irksome at times but…. I like her. I find her content relatable and entertaining.
That said, after reading her book, I like her even more. Reading her story helped me to reframe some of what I found off-putting. This is definitely one of my favorite memoirs about autism.
Autism presents in such a wide variety of ways… If you’ve met one autistic person, you’ve met one autistic person, so it’s hard to say whether or not anyone else would feel the same way that I do. I think the memoirs people tend to like best are the ones they most relate to but… Other than Drama Queen… This is my favorite.
So, here’s me showing support for Paige. I highly recommend it.
I have something interesting (read strange) going on.
When I sleep, upon waking, in that space between consciousness and unconsciousness, I find myself writing. That is, I find my mind filled with lines as if they are being set to page. The tone is clear, voice strong. Only problem is that the stories are not stories that I have lived. I’m currently reading, Mary Karr’s The Art of Memoir. I appear to writing a memoir but it is not mine.
Sometimes, if I read a lot, right before bed, I have something similar happen. I will wake up reading. I continue reading the book, in the style of the writer, (making it up as go, apparently) in my sleep. This only happens when I’ve been reading for a long time before going to sleep. My assumption is then, that reading The Art of Memoir has my brain working overtime thinking about writing my memoir.
I have thought about writing a memoir (or three… I’ve lived many lives) for years. I’ve been told by countless people that I need to write one. I’ve assumed that some day I would write one but… Every time that I’ve thought about it I’ve become so overwhelmed that I just put that thought right away…some day.
The prospect of writing a book is intimidating, for anyone, I assume, but my overwhelm has been paralyzing. Where would I start? How would I know what parts of my life to include? Would I be able to remember enough detail? Should I reread all of my journals? And on and on. There is another reason though (or reasons, kinda).
I saw this on Facebook recently…
This trips me up… The other people part. A memoir is about the writer, your stories, what you’ve learned but… We do not live in a vacuum and those stories often include others.
There are many others throughout my life that would not come off the best. There are many ways that I wouldn’t either but that’s fine. I own my past fully but… Those others. I have a tendency to avoid talking about people in my past, other then with those closest to me, because it’s complicated. Things are never black and white and I don’t want anyone to come off as a villain. There are no villains in this story, only wounded people. I feel the need to protect those people, though they did not feel that same need towards me. *sigh*
There’s also the issue of my mother. I’ve always felt terrified at the prospect of my mom reading any book that I might write. She is one of those that I feel the need to protect and, well, even though I live with her, she really knows nothing about my life. I think I’d prefer to keep it that way. I don’t want to hurt her and I’m not a fan of drama. My guess is that she wouldn’t even read it and if she did happen to, she would just sweep the whole thing under the rug. Never happened. That is her go to.
When I was in my early twenties, I had her come to a therapy session with me. I had gotten a tattoo and had been hiding it from her….
The session did not go well. There was no drama, but there was no honesty on her part either(other than her telling me, directly after said appointment, that my therapist was not to be trusted because… She was gay… You have got to be kidding me). The anger I felt over the dishonesty prompted a conversation (more just me crying and rambling and admitting all of what I thought would have been my failings in her eyes). You see, up until that point, I believed that my mom didn’t love me, or that any love that she had for me was dependant upon me living up to the image that she held of me. The actual me could not be further from her held image. What I learned was that my mom loves me to the best of her ability. That ability does not include changing that image. She can hear it and continue to love me but she can’t hold it. Denial is her survival. It’s the only thing she knows and she is not self aware enough to know more.
I am though. I am self aware enough to see that all of this, while valid, is also an excuse so that I can self sabotage. I am called to write a book. Maybe several. I have been for basically my entire life. I think I’m finally finding my footing. Maybe I can finally do what’s right for me, regardless of my desire to protect those around me. Maybe I can finally put myself first. Admittedly, even writing that, put myself first, feels icky. I’m getting there though. One foot in front of the other. One step at a time.
