Category: Empathy

My Hysterectomy: Grief, Regret, & Joy

Grief, like so many emotions, is an experience that relentlessly evades my expectations no matter the circumstances. It doesn’t matter how many times I try to “practice” a future incident or attempt to troubleshoot how I’m feeling. Grief is stubborn. Grief is creative. Grief is necessary. But goddamn… grief is a bitch.

This summer, I lost so much. In rapid succession, my life began to shatter and splinter outward in sharp, crackling edges. Let’s just say– if I’d been given a bingo card with the events of my life in 2022, I would have bet my existence there wouldn’t be a single winning bingo on it. But here I am– holding a tattered bingo card that’s been stamped so many times the ink has begun to bleed. 

Grief’s gnawing, grating lament has been present for so many months now that I hardly feel it most days. But grief has found a new way to make me hear it again in the most unexpected way. This grief is like the ground after an earthquake, when the earth begins to liquify and water bubbles up through the cracks. This grief is unique, and feels decades old. And I suppose it is…

Grief, Regret, & Joy

In August 2022, after 20 long years, I was finally able to receive a total hysterectomy. I’m a trans nonbinary person with Polycystic Ovarian Syndrome (PCOS) and persistent gender dysphoria, and I have been fighting to receive this medical intervention for two thirds of my life. This victory should make me happy. It does make me happy. Indescribably happy.

But alongside this relief and joy is a dark swirling void in my chest that pulses sharply and shrieks to be heard. This void reminds me of things pushed into cages in the back of my mind.

It reminds me of 20 years of horrific and debilitating agony from large ovarian cysts that ruptured routinely throughout my life from ages 12 through 32. It reminds me of missed classes and days of work. Frantic trips to the ER. Fearful menstrual periods waiting frozen with terror for another bomb to go off inside of me. Invasive tests and stoney-faced unlistening doctors. 

“Alongside this relief and joy is a dark swirling void that pulses sharply and shrieks to be heard.“

This insistent grief paints an uncanny and unwelcomed image of a 12 year old kid blacking out while home alone and waking up to a still-present, gut-wrenching pain that sadly wasn’t just a bad dream.

And more than anything, the black swirling void in my chest stirs and coils into a viper that reminds me that often with grief… comes rage. The viper in my chest spits out echoing reminders of betrayals and failures to protect. Of the hippocratic hypocrisy– “do no harm”. The echoes summon the memories, accompanied by the haunting grief… the rage.

“This shouldn’t happen again. It’s rare. You don’t need to worry.”

An image of a 12 year old terrified to walk down the stairs, scared to somehow set off another bomb inside. 20 years of it happening… again. And again. And again.

“Take these and it’ll stop.”

A just-barely teen cycling through half a dozen hormonal birth control medications, quickly followed by a quick succession of anti-depressants, chronic pain, and intense suicidal ideation.

Lots of pills of all different shapes and sizes and colors

“You don’t know you don’t want kids. You’re not 30 yet. What if you change your mind?”

A child, teen, then young adult begging for help from doctors, insisting that no child– even if it were wanted– is worth this daily dread. This indescribable agony that makes life seem unlivable.

“It’s just part of being a woman.”

A too-young child learning to dissociate so far outside of their body that the pain the body feels is like a flickering candle in a distant galaxy.

Dark galaxy with a faint moon

“Only come to the Emergency room if you’re bleeding through an entire pad.”

A young adult gasping, “I’m fine. This is normal.” while inwardly praying to either black out or die. Anything to escape the all-consuming pain that makes their vision go white.

“I’d trade you if I could.”

A confusing rage and deep, unfathomable sorrow that pools around the viper swirling inside.

Grief, Regret, and Moving Forward

I’m still not sure what to do with the gritty heaviness of this grief. This grief is dripping with poisonous rage and there’s nowhere to place it. No single person to direct it toward, demand answers from. Yet holding it inside grows challenging. How do you coil your rage around a systemic cage? 

This rage is a part of my grief that I cannot lock away. Its molten heat merely melts the lock. I don’t know how to honor this anger. I don’t know how to look back at my past and tell my younger selves that they did everything right. They did nothing wrong. It wasn’t that they didn’t say the right words or do the right things. They tried so damn hard to be heard. They collected countless bruises and traumas, and they kept going anyway. They grew to be a warrior far stronger than many grown adults ever need to be, and far, far too young.

As reproductive rights continue to be challenged throughout the country, I grieve and I rage. Bodily autonomy is already denied despite documented “medical necessity.” Further barriers to medical care seem insurmountable in an already cruel and inhumane system which deliberately and callously silences minority voices.

And echoing in my mind is the question “Who defines ‘necessity’?” This question haunts me through my grief and my rage.

I look back and tell my 12 year old self…

“It was a necessity. It was a necessity for 20 years. It’s time to let yourself feel again. I am so damn proud of you, kiddo.”

Navigating Autistic Grief & Anger

Emotions are often a daunting endeavor for me. I struggle to identify how I am feeling, then struggle to emote the feeling outwardly in a way others interpret correctly. (Or more often, I painstakingly mask it.) I especially struggle to let myself feel and sit with my feelings—particularly grief and anger.

When I think about it, there are actually many reasons why I shy away from both grief and anger.

Intense bodily and sensory experience

These feelings are often accompanied by uncomfortable things like: nausea, dizziness, buzzing electric limbs, stuffy nose and wet face from crying, elevated heart rate, clenched jaw, tensed muscles, etc.

They feel incredibly all-consuming

Both set off a fight/flight/freeze/fawn response in the amygdala, and that sends my brain into a hyper-focus on the “problem” of my emotion, like it’s some sort of math equation I can logic myself out of if I crunch the number just right. (Yikes?!) And it feels like I will never not feel the all-consuming emotions again— like no other emotions exist or will ever exist.

They make me feel out of control

I don’t mean “out of control” like smashing dishes or slamming doors; I mean “not feeling safely in control of my feelings.” I’ve spent so long repressing and locking away “negative” emotions like anger and grief that feeling and expressing them feels so utterly unnatural to me.

But that leads to a vicious, self-damaging cycle. I automatically repress my anger and grief for a whole host of reasons:

  • Masking by default
  • To avoid bringing attention to myself
  • To avoid further conflict or uncertainty
  • To have some amount of control in something (imagined or not)
  • To give myself more time to process at my own pace (or… not process, apparently…)
  • Feeling like an inconvenience or burden for showing them
  • To spare other people’s feelings
  • To not appear selfish when others are also upset (pain comparison)
  • To be a caretaker or support, always to others and rarely for myself
  • Not wanting to have or feel them (avoidant behavior)
  • Thinking I am a terrible person for feeling them
  • Not realizing that I can feel more than one thing at once (and that they can —and often are— contradictory!)
  • Because I often don’t think I deserve the time and space to feel them
  • Thinking that it’s somehow “childish” to feel

“But Alex, what happens to those feelings then?” you may ask. (Let’s pretend you asked. I’m feeling a bit lonely today. How are you?) Well thanks for asking totally and completely unprompted, dear reader.

Until recently, my answer would have been “I just don’t feel them” with a nonchalant shrug and a misguided feeling of pride and strength. But the issue with stuffing all of the anger and grief into boxes and locking them away is that eventually… the box can’t hold it all anymore.

No matter how many locks I add; how many chains, ropes, and weights… anger and grief are not content to remain contained indefinitely. When I don’t allow myself the time and space to feel, these boxes are ultimately stored in my body. In my tensed jaw, tension headaches, scattered thoughts, tight muscles, fluttering stomach and heart. Anxiety, depression, panic, obsessive compulsive tendencies.

Only when I am pushed to the absolute breaking point do those boxes shatter and I feel everything. All of the build up from weeks, months… sometimes years. All at once. Such an irony that some of my only experiences really feeling both grief and anger (and the overwhelming nature of both) are massively amplified by the sheer volume of emotion built up and not yet processed.

Slowly, I am learning.

The lessons I am learning are slow to come. They are inherently unnatural to me, and my neural pathways fight with all they have against veering off course. It feels terrifying to my brain to stray from what “keeps me safe” (faulty defense mechanism). But faint pathways are beginning to glow ever-so-slightly alongside the glowing stubborn hardwired paths.

  • I cannot control my emotions. I may shove them into a box and tuck it away out of sight, but those feelings only fester and poison me from the inside out. “Out of sight”, it turns out, is actually not “out of mind.” The only thing accomplished is delaying and amplifying those feelings for a later date when the box explodes, often in the least opportune time.
  • Not feeling is not necessarily “strength.” Sure, it can be a protective tool and defense mechanism. It can get you through some horrific experiences and allow you to continue onward. Society tries to shame us into being silent and “strong.” But true strength—and true courage— is learning to take that box of scary “negative” emotions down and open it.
  • It’s ok to put feelings into a box short-term. I don’t need to feel all things all the time. I don’t have to be overwhelmed constantly. The difference is that the box needs to be taken back down routinely to look inside until it is familiar and routine.
  • Feelings are not rational. They are not flaws. They are not selfish. They are not negative. They cannot be logic-ed away, calculated out, or erased completely.
    • Anger is there to show us when boundaries have been crossed; when we value ourselves and our needs; when we need an alarm to alert us that we are feeling a mixture of many big, underlying emotions.
    • Grief is there because we care. We love. We lose. We mourn. We hurt. We love again. We hope. But we are not our feelings, and both grief and anger are completely acceptable to feel.
  • Sharing feelings with supports is not a burden. Checking in with friends and family about intense feelings is acceptable. Asking if someone has the space and spoons to help you hold that feeling is invaluable, and so many people want to be there to help you do so.
  • It’s okay to feel big things. Allowing myself to really feel these emotions is going to take time, and I can’t lie… I am still utterly terrified by it. It sets off all alarm bells. It sucks. But it’s also a massive relief. I have steps in place to start cracking those boxes open—just a smidge at a time— to vent the barest wisp of emotion out. I am holding space for myself to fully feel the weight of that box before placing it back on the shelf for another day.

And with practice, maybe I won’t need a box with so many chains.

Thoughts from a Quarantined Autistic

I’m writing this post from self-quarantine, practicing social distancing. Luckily, I have no COVID-19 symptoms (so far). I am isolating myself to help slow the spread of this deadly virus, as well as protecting myself as I’m in the higher-risk category. I’ve had a lot on my mind during this first week of isolation and have been struggling with some pretty tremendous mental health concerns.

Despite all of this, I’ve also found some ways to find some calm and order. I want to share some of them with all of my readers—Autistic or not. As a multiply disabled, introverted Autistic, I have a unique perspectives to offer. I generally don’t leave my house much when I can help it; I have a lot of online friends; I’ve been bed- or couch-bound countless time in my life. Social distancing is kind of my default, even if it’s not always my choice.

While my thoughts aren’t going to help everyone, they may help someone. And that’s all I can hope for.

1) Keeping any routine possible; Adapting what has to change

This is something I practice anytime I cannot follow my normal routine in general. Keeping to a routine—even an adapted one—is key to my mental health. Because I also have ADHD, that can sometimes be tricky, but routine doesn’t have to look like a rigid frame. It can be bendy and flexible if that’s what works for you. A step in your routine can be as simple as “In the mornings I will do something relaxing before work.”

Even though I am working remotely now, I have been doing my best to get up and go to bed at the same times. I eat breakfast at the same time, and start work at the same time. That familiarity and rhythm brings comfort and certainty in a very uncertain time.

But what about things that have to be changed? For example, what if you usually visit your favorite coffee shop with a friend after work? In cases like that, I Skype that friend, brew some tea together and talk as usual. Usually go to the gym at night? Look up YouTube videos of workouts you can do at home, and work out during your usual time.

It’s not the same, but it’s familiar and that can bring calm. It’s taken several days of my “new normal” routine to feel natural, but now it brings me a lot of comfort when I’m anxious.

2) Putting locks on social media apps & limiting news

I often compulsively check social media during my downtime, partly because so many of my friendships are online, and partly because I find social media to be a nice distraction. But right now, that’s not the case. I find myself getting sucked into hyper-focusing on news, perseverating on local events, and worrying about friends and family (and everyone in general).

I ended up setting up Screen Time on my phone for all social media apps. That’s a setting on iPhones that can help you control your app habits; there are similar things for other phones. I gave myself a 30 minute cut off for social media. That means when I reach that 30 minutes, a notification will pop up and let me know. I then have the option to snooze that reminder for 15 more minutes of viewing time, turn it off for the day, or just close that app.

I’m finding that this helps with executive dysfunction and getting trapped in a loop, losing hours of time to stress and panic. It’s nice because it also doesn’t make me feel out of control. I am able to dismiss the reminder, and it will remind me again after 15 minutes when I can then decide again if I need a break or not. It holds me accountable, but also gives me the power of choice when my brain can’t necessarily regulate itself.

3) Dual tasking when I need distraction

I’ve found that if I try to sit down and do something to relax and distract myself from the current situation, I will end up either doing something else by accident or heavily dissociating. (Sometimes both because I’m an overachiever.) That’s not helpful, and actually really distressing!

In the last week I have turned to giving my brain dual tasks. For example, I will cross stitch while listening to the TV. I’ll listen to an audiobook while I play a simple game. Color and listen/sing to music. That’s been the key to me sticking with a distraction long enough to actually de-stress! I’ve finally been able to relax now with that strategy and it’s doing a world of good for my mental health.

4) Being gentle with myself regarding mental health

(Content warning: eating disorder, OCD, mental health spirals, etc.)

In the last few weeks, I’ve definitely noticed an uptick of mental health issues in myself. My eating disorders—even though I’ve been doing really well in treatment—tell me that if I eat too much we will run out of food. Then my wife will have to leave the house and of course she’ll get sick and she’ll die and then I’ll suffer and then I’ll die… Oof. The eating disorder is latching onto very real fears and just running with it.

I’ve also seen a huge relapse with obsessive compulsive issues. I had pretty severe OCD as a kid, but have recovered to the point that I have only really have mild OCD tendencies. In the last week in particular, I’ve really struggled. For example, one night I got “stuck” in the shower for 30 minutes, washing my whole body several times, then standing there as my brain told me I still have the virus on me and if I get out now I will murder everyone I know and love. I couldn’t seem to make my body move. So I thought maybe should call to my wife to come help me, but my brain said if I did, maybe she would trip on the way up the stairs and hit her head! (OCD is a real piece of crap.)

My agoraphobia—which I always struggle with to a certain extent—is absolutely and positively thrilled to have a logical reason to not leave the house. So I struggle to even go on short walks. And I won’t even start on anxiety because… it makes me anxious. Hah!

So yes, it’s been really rough. But ultimately, I have realized that I gain nothing by being critical of myself. This situation is hard. It’s scary. It’s really horrifying. And my brain is actually doing it’s best right now. Strange as it sounds, it’s trying to protect me and it’s just sort of… glitching. It’s similar to the concept that I talked about regarding my chronic illnesses in 28: Chronic Illness: Am I “Broken”?. My body and mind are compromised. And they’re doing the best they can right now. What I can do is be gentle and give myself time to rest and recharge.

5) Positive output

The last thing that’s been incredibly helpful for me is making something positive. My wife and I made a cover video of the song “Tomorrow” from Annie to share with our loved ones. It started as us unwinding at lunchtime and evolved into my wife writing a piano arrangement. We made the video because we needed it ourselves. We feel so helpless and powerless. We did it to uplift our family and community, but we also just needed to do… something, anything! Something to put a bit of happiness and hope out into what is an extra dark and scary world right now.

Putting something out into the world doesn’t have to be extravagant. It can be sending an email to a friend, making a piece of art, sending a gift to a neighbor, or donating money to someone in need… something to remind yourself and others that the sun will shine again.

A picture taken in the woods during fall when the trees are radiant orange. The sun shines through the trunks toward the viewer.
“Tomorrow”, taken by Alex Earhart

20: Empathy (Part 3) The Good!

As promised in 17: Empathy (Part 1) and 18: Empathy (Part 2), I’m now tackling the positive aspects of being an “empath,” or hyper-empathetic person. In Part 1, I wrote about the stereotype that Autistic people don’t experience empathy and how—not only do I empathize—I actually experience hyper-empathy. In Part 2, I focused on media consumption and how careful I have to be with what I watch, listen to, or read due to hyper-empathy. But the focus of both posts was on the negative or tiring aspects of being hyper-empathetic and how it can be a burden. Today I really wanted to address the wonderful side of being so sensitive to others’ emotions.

  • I experience positive emotions strongly too

In Empathy (Part 1), I wrote that “I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive.” I also described “taking on other people’s pain.”  But it’s not just the negative or draining emotions that my hyper-empathy exposes me to!  I get to experience the positive ones too!

When someone around me experiences a strong positive emotion—whether they be on screen or in my life—I am affected. If someone is feeling sheer happiness, I soak up the light from that emotion. I can become giddy and joyful when someone near me is in a similar state. I can cry from happiness and flap my hands with excitement when a character I love is happy. I sometimes have to clamp down on my emotions so that I don’t cry happy tears (or otherwise outwardly show just how happy I am) and embarrass myself when riding the waves of someone else’s happiness. The more deeply connected I am to someone, the more affected I am. It’s wonderful to experience such sincere happiness when others are happy.

  • I connect deeply with characters in media and my soul is moved by music

In Empathy (Part 2), I wrote about the negative ways that media can affect me and that “[d]isconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.” But just as I am positively affected by real-world emotions, I am also affected by positive emotions in media.

I sometimes connect with characters in books, TV, movies, and games so strongly that it feels like I have lived their lives. I hope some people reading experience what I’m talking about and can relate. It can take me days to disconnect myself from a good book and it leaves me with more insight and understanding about other peoples’ lives and experiences. It’s an enormous gift to be able to carry over what I learn in books into reality and further empathize with others.

The emotion in music often moves me to tears and fills me with such a deep peace and tranquility that I can physically feel something in my chest fill with happiness. Sad music can unplug a deep sadness within me so that I can begin addressing it; joyful music can alter my state of mind and leave me feeling energized and full of possibility. Music moves me in ways that I can’t even really describe fully in words.

  • I’m great with kids

I started babysitting around age 12 and loved it straight away. From there I became a part-time preschool gymnastics teacher, then a counselor’s assistant at a camp, an assistant teacher, and finally an English and reading tutor. I love being around kids and young adults, and I think one reason I’m so suited toward childcare and teaching is my ability to empathize.

I told myself when I was young that I would try my best to never forget what it felt like to be a child:  the changes, the anxieties, the frustration, the lack of control… and for the most part, I feel that I’ve stayed true to that promise. I can empathize with kids and speak with them from a place of equality whenever possible. Showing true caring for a child means that I’m often let inside their worlds to see the joys, the anxieties, the excitement, and the stresses…and I cherish that gift!

  • I’m a good partner

My ability to empathize deeply makes me a patient and loving partner. When my wife is happy, my mood is positively affected! When she’s unhappy, I can empathize deeply with how she is feeling and come up with useful ways to help and support her.

  • I am a good listener and ally to my friends and family

As I mentioned in previous posts, my ability to hyper-empathize means that friends and family often confide in me. While this can be tiring, it’s also a gift that I truly cherish. I experience great joy knowing that my loved ones feel they can trust me to listen to things that are going on in their lives.

  • I can empathize with strangers

When I was 7 or 8, I heard about a flood that happened in a different state in the US. There was one church that was severely affected so much so that members could no longer enter the building, much less worship there. I had never been there, never met anyone in the congregation, nor met anyone affected by flooding, but I felt such grief that I was moved to do something. I wrote them a letter and (with my parents’ help and permission), donated my entire allowance savings to their rebuilding efforts.

Around the same age, I decided that I would foster or adopt a child someday. Hearing about kids in the system broke my heart and I was adamant that I would someday provide a loving home to a child in need. (Someday, I hope this will be a reality!)

My hyper-empathy enables me to relate to and feel for strangers—people I have never, and may never meet. It makes me a compassionate, caring, and deeply sincere person, and I cherish this ability.

So there you have it:  some of the many positive ways that being hyper-empathetic can actually be a wonderful thing and something that heavily influences the way I view and interact with the world.

18: Empathy (Part 2)

Hyper-Empathy and My Media Choices

I began writing about my experiences as a hyper-empathetic Autistic person in 17: Empathy (Part 1) and quickly realized that I had too much to talk about in just one post.  Today will continue my look at empathy–this time through the lens of my media consumption.

As I mentioned briefly in Part 1, I struggled a lot when watching TV or movies as a child until I realized that I was having extreme issues over-empathizing with characters or people on screen. If I’m being honest with myself I sometimes still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

One clear example of this is the show “America’s Funniest Home Videos.” I know many of my readers aren’t from the US, so I’ll explain. On this show, viewers watch home videos sent in by other viewers and (hypothetically) laugh until they cry. My family used to watch the show pretty regularly. Some of the videos are adorable, others are sweet, and some are funny. But I realized after a while that I was really tense while watching and noticed I was most upset when certain kinds of videos came on. There are a good number of videos sent in of people slipping, falling, crashing, or otherwise hurting themselves on camera. I hate those!

I understand logically that probably no one was actually seriously hurt in these videos. I realize that people probably wouldn’t have sent them in if they had! I get that the person in question may even have found it funny themselves. But it doesn’t really matter. For me, there’s truly never been anything funny about a person in that kind of situation—even if they’re perfectly fine. The “funny” videos where someone dropped a birthday cake or scared their child while wearing a mask aren’t any better for me. I empathize too much and feel sad and guilty about the dropped cake or upset and betrayed by the parent who frightened the kid.

There are certain storylines in other shows and movies that I usually don’t enjoy watching either. One great example is the infuriating “barter” episode. The one where a character runs around for the entire episode trying desperately to reach some goal only to fall continually just short of it. Where a character has a priceless object —let’s say, a vase— that they want to trade for a famous baseball card while at a flea market. Unfortunately the baseball card collector has her fair share of vases at home and refuses…but mentions she would just love that shiny red action figure at the table next door. The main character rushes to the action figure collector who tells them they aren’t interested but really wants the antique music box sold by their competitor… The story goes on until our hero has traded their vase for a candelabra for a chess set for a Pac-man lunch box for a whole host of things… all until they get that shiny red action figure and go to the baseball card vendor, only to find that she just sold it. You know–the really, really frustrating and infuriating episode trope. That’s another example of something that’s meant to be entertaining but makes me incredibly anxious and upset.

I could go on and on with media:  books, news, video games, movies, TV, music, etc. I have to be very careful about what media I consume for many reasons, but empathy is one major one. Watching the news has almost always caused me extreme anxiety or even panic attacks. Certain songs can send me quickly into a spiral of sadness and anxiety. Books can pull me into their pages and make me over-relate with characters who exist only in the ink on a page. Horror and gore are things I cannot stand, even a little. Disconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.

Over time I’ve gotten better at both selecting media and at recognizing when I’m over-empathizing. These are some things that help:

  • I don’t usually watch reality TV (well, that’s not just due to empathy…).
  • I avoid depressing or distressing movies or shows.
  • I mostly avoid going to the cinema (big screen=big impact, plus no pausing).
  • I’m very selective when keeping up with the news.
  • I remind myself during difficult scenes that actors aren’t really in the situations they act in.
  • I mute dramatic music when I notice it affecting me in a scene.
  • I do something else while I watch to ground myself in reality and disconnect more from onscreen emotions.

I’ve found that a healthy mix of avoidance and coping mechanisms means I can enjoy more media. I still tend to watch mostly children’s shows, cartoons and anime, and fantasy/scifi movies and TV though. The rest just don’t usually interest me and these genres pose less of a potential threat to my mental and emotional health.

So there you have it! This is another post that makes me feel vulnerable and I’m still processing why that is. Maybe because I’m tackling a stereotype that is still so widely believed. Maybe because I’m afraid people will see my sensitivity and empathy as weird or signs of weakness. Maybe because I’m afraid people will discredit and invalidate my experiences. I’m not really sure yet, but I also think it’s important for me to be honest and share true insight into the way I experience the world.

The next time I post about empathy, I want to focus more on the positive aspects of being hyper-empathetic!

Click here to read 20: Empathy (Part 3) The Good!

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