Neurodivergent Grief

Reconsidering a classic song in light of recent events

I need my pain

Growing up, I went through a lot of shit. Teenage me listened quite a bit to “I Am a Rock,” by Simon & Garfunkel. I could really relate to the sentiments expressed by the narrator in the lyrics (I’m taking a literary analysis view, here).

Having recently gone through what has been the worst pain in my life to date, I have some new sentiments for my younger self, whose habits meant to protect me have persisted over the years.

It’s better to have loved and cried than never loved at all. The desire and need for love never died, it was just locked away. Your fortress deep and mighty has kept you from fully feeling your love for those nearest and dearest. It has kept them from fully feeling that love from you, as well. That’s a damn shame that you can’t now correct. 

You can, however, allow yourself to feel, and to love, to risk the pain now, and in the future, because again, it’s better to have loved and cried than never loved at all. Even the love you have felt and shared, restrained by fear though it was, followed by the tears and pain of a terrible grief though it was, was better than to never have loved at all.

Your armor did not protect you, nor can it ever when love finds its way to your heart, which it has. It only holds you back, keeps you from fully experiencing the wonder, the joy, the bliss that love can be. The irony is, it will not hold back the pain of loss at all.

You can still have your books, and your poetry, and share them, even, in friendship and in pain, and certainly in love. It makes the world so much richer to share your world with another who gets you and loves you and shares their world in return.

No one is a rock. We all will melt in passion’s fire, should it come our way. We all will crumble under the weight of a deep grief, should it visit us someday.

No one is an island. We interact with others to get by, at the very least, and the world of people will impact us every day, whether we like it or not. It’s the bonds we form with others, bonds of friendship and of love, that can help us through the hard times, but only if we take the risk and allow those bonds to form.

I’m going through the worst pain I’ve ever felt right now. I’ve cried so damn much. It’s because I loved, but it’s also because of that love that I will get through it. And I will still have that love when the pain has dulled to an ache and the tears become a trickle. The injury may still flare up now and then, there may be the occasional seasonal flood, but the love will enrich each and every day.

You are afraid. You’ve been afraid for years and years. Afraid of the pain. Afraid of the tears. It’s ok. You did the best you could given the circumstances of your life. But it’s time to leave the walls behind. 

Your heart has been cracked wide open because you dared to let the love in. You tried to keep a handle on that door, to moderate the flow of feelings. To love and to protect at the same time. It’s ok. You did the best you could given the circumstances of your life. But because you loved, and fiercely so, grief has now cracked your fortress, and it’s time to step boldly into a world beyond those walls.

It’s time to feel. To love and to grieve. To give, and maybe to receive. Be brave, my wounded one, and let the love heal you and see you through the pain. This pain and whatever others may come your way. You are not an island, you are not alone. You do not need to be afraid of the dinosaurs anymore. 

Love is not your weakness. It is your strength. Love fiercely. Make that risk your business. You and your loved ones deserve it. And it is so much better than to have never loved at all.

Thinking with Jurassic Park, taking the shock a little at a time

Can you live with a velociraptor?

You know those scenes in the Jurassic Park movies where they’re trying to close and hold a door shut so a velociraptor doesn’t get in and eat them alive? That’s kinda what I feel I have been doing since my beloved left this world. 

All the books and social media posts I read, the support group, the counseling, the creative projects, the memorial planning and getting the videos shared, my page, the playlists, making sure I take time to feel and cry and scream, and my trips to where he lived – it’s all me trying to keep the velociraptor from eating me alive. 

It’s exhausting and it’s scary. How do you tame a velociraptor so you can live with it and not get torn to pieces? In Jurassic World, they trained the velociraptors, but still had to keep them locked up or get killed. 

I guess maybe Owen’s and Blue’s relationship was more a matter of coming to an understanding through experience and building trust. More to ponder, I suppose. 

Of course, the first thing to do, according to my college training, is define my terms. What exactly is this velociraptor I’m trying to keep at bay, lest it kill me, presumably in a very dreadful fashion? His absence? I suppose so. Everything stems from that.

I tend to get into a swimming pool one small step at a time. Jumping in is too much of a shock to my system. So I just delve out the unpleasant sensation a little at a time. Perhaps that’s my approach here. Deal with the absence a little at a time, til I’m all the way into the new reality.

If I can find some sense of connection, perhaps I can develop an understanding that will allow me to live – carefully – with his absence, and trust that it won’t devour me. 

Baby steps.

Trying to make sense of the incomprehensible, 10 weeks after the tragedy and trauma of losing my beloved to suicide

A strange, new world

Today marks 10 weeks since my beloved left this world. Things have changed some. The shock, denial, and horror aren’t as prominent in my daily mix of emotions as the were at first. There’s more pain and longing now, I think. 

Trying to parse out my emotions has often been a bit of an endeavor, and right now is no exception. I know it’s different, but I can’t quite put into words all the ways it is different. Some aspects of my emotional landscape are more salient than others, I guess.

There’s been desperation – the kind unscrupulous people prey upon. Having been through some shit in life, I know I need to watch out for that. But I’ve been desperate for connection. Connection only my loved one could give, connection with him. 

Our daily interactions were such an important part of the fabric of my life. I’m trying to keep weaving this tapestry of my existence, but a whole lot of the important threads have been severed. Trying to find a way to continue the pattern, or weave it into something new, has been disorienting.

I’ve added things to my life that have been inspired by my loved one. Activities of the sort he did or might do. I’ve continued to learn new things, even after the memorial. So many ideas and plans and good intentions. But my energy is limited and I get overwhelmed or derailed often, due to the ever-present strong emotions that are part of grieving. 

Makes me feel like a patient recovering from some major ailment or surgery. And I’ve plenty experience with hospitals and surgeries, so I mean what I say. It’s like going through some sort of physical and emotional recovery and rehabilitation after a major trauma to the system. I suppose because that’s actually what it is. 

The trauma keeps hitting me, though, again and again. I’ve got to learn to lean into the waves when they hit, move with them, so maybe they won’t knock me over as often.

I feel like a crazy person because I’ve started talking out loud to my departed loved one. But it turns out that is quite normal behavior for those grieving a loved one. It’s always weird for me when I find out something I’m doing is “normal.” I’m so used to being the weird one, an outlier. 

But it’s also a bit comforting to not have everything about this traumatic time be also weird and an outlier. Being different can get exhausting. It’s nice to read people’s posts in various groups for the bereaved and be able to relate to what people are saying. 

10 weeks. 10 weeks of no chats, phone calls, visits, texts. 10 weeks of running into more and more things that will never happen again, more and more memories, more and more daily life and dreams and thoughts I can’t share with my beloved the way we used to share everything.

10 weeks of trying to find ways to keep a sense of connection, meaning, and purpose for this part of myself and my life, the part centered on, thoroughly entangled with, my beloved. 

The vastness of this loss I still haven’t discovered the limits of, if such a thing is even possible, is enormous. It’s overwhelming. It doesn’t seem to have an end. It feels like standing on a precipice, staring into a limitless void, where once was a world, a universe, where once was my beloved.

It’s a whole new frontier. One I didn’t ask to explore, nor would I have ever wanted to. But the only thing for it is to go ahead and boldly go. Out, into the unknown, to see what we can see. Learn what we can learn. Be what we can be. Maybe risk is my business, now. I guess we’ll see.

Living Through Suicide Loss with an Autistic Spectrum Disorder (ASD): An Insider Guide for Individuals, Family, Friends, and Professional Responders, by Lisa Morgan, M.Ed.

A very personal read

This book of 136 pages (plus resources at the end) is divided into 9 chapters. Within the chapters, the author addresses specific topics in short sections, like “The first week” or “Determination,” each followed by a section entitled, “Let me explain/It would be so helpful.” In the “Let me explain” sections, Morgan goes more in-depth on how her experience of the specific topic was shaped by being autistic. Morgan discusses how sensory, communication, or other issues played out as she went through the loss of her husband, handled his affairs, and began building a new life without him.

Let’s get some content warnings out of the way: this book uses language some autistics find problematic, to say the least. It’s right there in the title. Morgan’s understanding of autism is the medical model – deficits, person-first language, etc. 

Additionally, some readers may experience discomfort with descriptions of Morgan’s marriage. If you or someone you care about has been in a relationship with a very controlling partner, you may find some material triggering. Such content is sparse, but you should be aware that it is there. 

Medical model and other possibly triggering content aside, this book has much to offer. Morgan gives an incredibly personal account of her experiences dealing with the suicide of her husband and learning to handle a good many things she did not think she could in the months following his death. What some neurotypical people might consider “oversharing” is precisely what may make this book particularly relatable to autistics and other neurodivergent people.

Morgan discusses obstacles that are and are not specific to being autistic and offers suggestions for what may have helped her along the way. Morgan points out things to be aware of, to watch out for, to avoid, or to embrace. She has tips for professionals, family and friends, and autistic people going through this particular type of loss.

Overall, I would recommend this book. Morgan does a nice job of highlighting both autistic-specific difficulties and strengths in the aftermath of a loved one’s suicide. 

The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, by Mary-Frances O’Connor, PhD

Some unexpected learning

(my first book review can be found on my Facebook page, here)

This is the first book I started reading after my beloved left this world. At 218 pages – 2 sections, 11 chapters – I expected to breeze through it and emerge equipped with a basic understanding of how grief operates in the brain which would help me on my way through my grieving journey. It did not play out as expected.

I generally enjoy reading about neuroscience, and expected this book would be a great and helpful read. It doesn’t presume a background in neuroscience, nor does it talk down to the reader. 

The author clearly cares about those experiencing grief, and this book is meant to help. The wealth of information and insight in this book is fantastic. The level of care is touching, and the author shares her own grief story in addition to some rather interesting perspectives on grief and grieving.

What I failed to account for was a particular feature of my own grieving. I failed to account for my own attempts to create and cling to non-scientific scenarios that would allow me to think I would somehow see my beloved again.

This book took me awhile to get through because it hurt. It hurt because it did indeed challenge the stories I kept trying to tell myself about the nature of reality and what it all means. 

I was trying to convince myself of things I didn’t really believe, as a way to mitigate the pain, and this book kept bringing me back to the paradigm I normally operate within as an atheist.

This book is definitely a science book. It doesn’t entertain notions of anything science can’t test, prove, or disprove. If you are, like me, clinging to some shaky non-scientific notions to help get you through your grief-stricken days, this book may disabuse you of some of those notions.

Many people will find this book fascinating and informative, because it is. Many people will not have their beliefs (or lack thereof) challenged by this book. But some might. 

I recommend this book, but I also recommend you pause and consider where you are at in your grieving, if you are grieving. You can read this book at any time. Choose a good time.

Feeling stuck, I use an old Star Trek episode to ponder my situation and consider a way forward

Engage

I think maybe I’ve been slipping in and out of some dissociative state. And/or depression. In the first month, I was able to keep busy with organizing the memorial for my beloved and doing some work (as in, my job). Since the memorial, it’s been much harder to keep busy. There’s no pending project deadline for anything related to my beloved and it’s gotten harder and harder to do work.

That first month, I alternated between the intense anguish and the busy-ness. Now it’s intense anguish and depression and/or dissociation. In both cases, there’s been the intense anguish and my strategy for avoiding it.

I feel stuck in my grief, and it is more than I can bear, so I regularly oscillate between feeling it and avoiding it. That may be normal. But it doesn’t feel ok. It’s confusing. It messes with my sense of self, because each state is so encompassing as to feel like it is all there is, the one true reality. 

So I also feel like I’m search for or waiting for something. Some sort of understanding or event that will allow me to move forward, ideally with purpose. A resolution, I guess. A sign, a revelation, contact of some sort with my beloved or a message from some higher whatever. Many grieving people talk about having such experiences. 

My logical mind tells me what I’m waiting for doesn’t exist. My emotional side insists it must exist, because otherwise reality is to horrible to bear. 

There’s an episode of the original Star Trek series where Kirk is onboard a ship that is phasing in and out of our dimension or universe (sorry, the specifics elude me at the moment… my loved one would know… I think the episode was The Tholian Web?). The Enterprise crew are trying to beam Kirk back before the other ship phases out for good. 

Things get complicated. Kirk gets stuck in a weird in-between and nobody knows it right away. They think he’s gone entirely. Scattered atoms in the vacuum of space, perhaps. But then Lt. Uhura sees Kirk in a mirror. No one believes her, they think she’s delusional, until other people start seeing Kirk as some sort of apparition. Well, they get him back, of course.

So it’s like I’m waiting for someone to come tell me they’ve seen my beloved in the mirror. He’s still out there. We can make contact and we can be connected and someday we can be together again, somehow.

My logical mind raises it eyebrow and say it’s fascinating. My emotional side gets all riled up about the human heart, you green-blooded, pointy-eared, blah blah blah. It’s the never-ending battle between Spock and McCoy. Logic and emotion.

The action-oriented part of me that brings those two together and finds a way, a solution to whatever ails me this week, month, or year, my inner Captain Kirk, is grieving. Maybe he’s the one phasing in and out, waiting to be found and rescued. Or maybe he’s just trying to come to terms with the idea that Edith Keeler must die.

But then, I don’t like that conclusion. Maybe there’s any number of universes and timelines out there, countless Captain Kirks, some of whom don’t have to let Edith Keeler go. Maybe Wesley Crusher and the Traveler, Q and the Continuum, the worm-hole aliens and the Emissary and all those alien species that found us so primitive are all as real and true as much as Kirk and Edith Keeler. Maybe the nature of time and space and reality just isn’t what we think it is.

I’m reminded of an idea I encountered in college – homo narrans, humans as storytellers. The stories we tell ourselves help us preserve (a version of) the past, understand our present, and shape our future. They also help us navigate and determine a sense of self and perhaps a sense of meaning or purpose, both for life in general and for more discrete occurrences.

Using Star Trek to think about what is happening with me is an attempt to find a satisfying narrative that will allow me to feel better, and perhaps even move a step forward. It’s hard to move in any direction when there’s no understanding from which to proceed.

[tangent]

This plays into why I desperately want to see the note my beloved left when he chose to leave this world (I currently don’t have access to it, and don’t know if I ever will). It’s a significant piece of the puzzle, the story, and not having that leaves me with too much uncertainty as to whether or not whatever narrative I come up with works. It’s possible this wouldn’t be a problem for some people, but it is for me, with my particular mind, with its particular manifestations of neurodivergence. I need all the facts, ma’am. How can we be certain, otherwise?

Granted, it would only ever be a relative certainty, but the more information the better. For my brain, anyhow.

[end of tangent]

While I haven’t had a momentous occasion like my beloved appearing in a mirror, or his apparition hovering in the engineering room of some starship, I have had a dream that gave me comfort and a narrative that helped, if only for a few short hours. It was a much needed break. 

I need a more powerful understanding, a far-reaching and persistent narrative, that will carry me further. It’s very challenging, phasing back and forth between the anguish and the depressive numbness or dissociative detachment.

Let’s hope I can treat my writer well enough to avoid a strike. You know, with respect, consideration, and a fair deal.

Long story short – I wrote something too long for a Facebook post.

The long version

When my beloved took his own life in March 2023, I went looking for resources, particularly groups and pages on my usual social media platform, for neurodivergents experiencing grief, to help with the grieving process. Given that grief and grieving are all tied up with our nervous systems, given that the nervous systems of neurodivergents do not function in accordance with societal expectations, and given that any resources out there for grieving people were likely to be geared toward neurotypicals, it seemed logical to look for neurodivergent-specific resources of the kind I prefer to engage with. I didn’t find much.

Following in the footsteps of many rights-based movements and grassroots community support initiatives, I decided to start with what I had and build from there. I have my own experience, my relent curiosity and drive to learn, and multiple networks focused on relevant topics I could plug into and start engaging with on my topics of choice.

I created a Facebook page. Neurodivergent grief.

My page is still very, very new, but already I find I need something more. Space. When I get introspective, I can write and write and write. And I wrote something that I feel is just too long to be a Facebook post. So, time to start a blog, like many before me whom I follow on social media.

We’ll see where it goes. Now, to get that too-long post up as a blog entry. Post. Whatever.