When someone says that, I always think of this trip from the summer I was 10 years old. Me and two of my sisters went to Pyramid Lake with my aunt and uncle and cousins. In the grand scheme of things this is a very low stakes story but it’s become legendary in our family. We had taken this trip a few summers in a row. It was magical, we would go out on their speed boat all day water tubing and skiing and camp on the beach at night. This year's trip was made even more idyllic by the fact that our mom was in remission from breast cancer, just growing out her newly curly hair and waiting to pick out her nipples for her boob job. Things felt like they were finally getting brighter. We headed out from their house in Long Beach, making good time in their SUV. Unfortunately we got a flat tire on the way there, no big deal. We arrived, loaded the boat in, rode across the lake to the beach and set up camp, then we took the boat out for a few rides before dinner.

We lost some sunlight because of that flat, so nobody was happy with the amount of turns they got before we had to ride back into shore. My uncle told us not to worry, he assured us that we would get more rides in the morning. Well, that night there was a summer storm and we woke to a flooded boat. We tried to scoop out the water but it wouldn’t start, we had to get towed to shore. Somehow in the shuffle of everything we got locked out of the SUV and had to get a locksmith. Once in the car on our way home one kid got carsick, another lost a tooth and was bleeding all over and a third thing happened that seemed terrible at the time, but I can’t remember it now. I don’t remember the exact order of things, but it felt like everything that could go wrong did. We called it the “trip from hell” for a long time. Not long after that our mom’s cancer came back, and it was in her lymph nodes this time. Oh yeah, then the water in Pyramid lake started disappearing so we stopped going. Anytime someone tries to reassure me that things will be better tomorrow I think of that trip.

I want to tell those people, you don’t know that things will get better. There might be a storm just beyond the horizon that neither one of us sees. I have to look for it and prepare. Like last night Matt went to the movies with our friends, Chris and Justin. A rare night off for me, I still had Hazel, but technically I should be able to relax a bit, that’s the idea. He took an Access van, which, if you don’t know, is an amazing city service for people with disabilities who need rides. Once you are qualified, you can get rides all over the city for the price of a bus ride. I can’t stress enough how amazing that is. Before we got qualified for Access a private 20 min wheelchair van ride cost us $150, and the van wasn’t even tall enough, poor Matt had to hunch over the whole way to and from his doctor's appointment. We were still figuring things out. Now a ride anywhere around the city costs us $2.75 and the oversized vans accommodate for the size of his chair and his extra long torso. We don’t take it everywhere, for example if we need to take Hazel with us or pick her up after an appointment, we also got Matt a travel chair that can fit in the mini van. But that chair is not as comfortable for a long period of time, like for a 3 hour movie.

Anyway, last night I set up a ride for Matt to take a van from our house to the Chinese Theater to finally watch The Odyssey. We had done this once before where I helped Matt load into the van and Chris met him on the other side once he got to the theater. Last time I scheduled the pickup to be an hour and a half before the show time, because the vans, we had been told over and over, are like a bus and might not arrive on time and might take multiple stops. The van arrived at our house right on time and Matt was the only rider, so he ended up waiting outside the Chinese Theater for over 30 minutes until Chris could get there. I paced the whole time and sent Matt a series of apology texts. I couldn’t help but feel like an absolute failure. I was stressed that Matt might get frustrated with waiting and, instead of contacting me or Chris, might drive his wheelchair somewhere, believing he could find his way back. Then not being able to and not understanding how much time passed, he would be lost.

Similar things have happened. Luckily when it happened before (after a caregiver who was supposed to pick Matt up fell asleep and didn’t answer Matt’s calls) I was able to get Matt on the phone, figure out what “the chicken restaurant” was and get him picked up. I turned on the tracking on his phone that night. But this time I was sure his phone would die and he would end up living on the street and eventually die too.

These are the stories my mind tells me. This type of thinking is why I’m good in emergency situations, because I’ve already thought of them. My brain is great at emergency simulations, it’s not great for taking what is supposed to be a night off. What actually happened that first night Matt went to the movies is I told him to please stay put. He did. Chris got there and they went to the movies. Afterwards the van got there on time and Matt got home safe and sound.

Last night there were no emergencies, thank God. Trying to learn from my mistake I scheduled a 5pm van for a 6pm movie that was a 15 min drive away. This time though the van didn’t arrive until 5:37. Then Matt had to load in and this time the van had to drop off other passengers before taking Matt to the theatre and load him out. The van didn’t arrive at the theatre until 6:20. I paced the whole time and sent Chris a series of apology texts. I couldn’t help but feel like an absolute failure. I know the amount of times Chris will agree to nights like this is finite and it’s dependent on how easy or hard I make it and I failed. I failed Chris and thereby Matt and thereby Hazel and myself. I should have scheduled the van earlier. I should’ve gotten a babysitter and gone with him. I should have bought a wheelchair van for us instead of saving to buy a house. I shouldn’t have canceled his last ride last minute, which clearly got us onto a shit list and now we will forever get the bottom of the barrel rides. It’s an outlandish idea that a city run program would keep track and take revenge like that. But it has to be somehow my fault because if it’s not then I am not in control. That is the scariest idea of all.

I must brace myself for everything to go wrong because the minute I let down my guard something goes wrong. A caregiver falls asleep, or my husband has a stroke, or my dad dies or my mom dies. If I didn’t let someone else care for Matt, he wouldn’t have gotten lost that day. If I didn’t stay at the hospital during complications of my pregnancy, I would have been there when Matt had a stroke. If I didn’t move to my aunt's house for a better school and more structure in high school, I would have been there when my dad had a heart attack. If I didn’t go to my friends house to escape the chaos of my house as a child, I could’ve kept the peace and my mom wouldn’t have gotten cancer. In each of these cases it has been reinforced that if I relax, if I let down my guard, if I take care of myself, then those I love suffer. It’s a lot of pressure.

I don’t know how to let this all go. Logically I know, I am not in control. I am powerless. And yet, I fixed our air conditioning when it broke last week. The management company would’ve just let us get heat stroke and die. I fixed our heater in our first house in Los Angeles. And it’s not just HVAC repair, a neurologist at the hospital asked if I’m a doctor because of my vast medical knowledge. No, I just take notes and know how to use the internet. The Occupational Therapists and Physical Therapists and Speech Pathologists have all suggested I go into their field because I have a “knack for it”. I don’t have a knack for it. I simply have been independent most of my life and through that independence I have learned to be resilient and I’ve learned how to learn. I have learned everything except how to fucking relax, without an extreme amount of substances. Not for lack of trying. I lived in an ashram in Virginia for a month with no substances, not even coffee or chocolate. I got sober for 3 years. I’ve read every self help book. But no amount of preparation can prepare me for the fact that I can’t prepare.

I told my therapist all of this today and she said “if there is no way to know what will happen next, isn’t it just as likely that something good will happen?” Ugh, I hate it when she says something right like that. Yes, technically, ugh. Each time we flip the coin of life it has an equal chance of being heads or tails. It does not matter what we flipped before. What I have is sort of the opposite of a gambler's fallacy, because I have lost so much I assume I will probably lose more. Which, who knows, maybe I will, maybe I won’t. Pacing won’t affect the outcome of the flip. Also, it’s just a fucking movie. Sorry I’m cursing at my brain, not you. If I’m going to tell myself outlandish stories, why not make them something good? Like I’m gonna finish my memoir and it will be a best seller. My one woman show will play on broadway and tour the world. In fact it will be so successful they’ll make a movie about it. Matt is going to make even more extraordinary progress and regain the use of his arm and he won’t have to use a wheelchair anymore. Hazel will be, well she’s already perfect and amazing, I don’t know what else I could possibly imagine there. You will all love this essay. There. I gotta say, it doesn’t sit right, but I’ll keep trying.

We went back to our respective work, her on her laptop with a special stand to avoid carpal tunnel, me writing an essay on my phone like the mad artist I am. I can never remember to charge and bring my laptop with me. Plus bringing my laptop feels presumptuous, like sitting at a four-top by myself. How can I think I deserve that much space? She obviously deserved it, with her severe brown bob and makeup free face, which was clearly a choice and not a fact of time. Leaning towards me “will you be here for a little bit?” she asked while standing, “yeah, you want me to watch your laptop?” She nodded “I’m just gonna take a quick stretch” she said. I nodded and wondered how to become her friend. I was enamored, can you imagine taking a stretch from working in the coffee shop?

She came back five minutes later and we smiled at each other. My food arrived a little after that, I had ordered a salmon tartine and a berry and cream pastry. After I finished my tartine I moved the plate away and pulled the pastry towards me. I saw my future bestie lean towards me conspiratorially “can I just say, as an LA girl, I am obsessed that you ordered both the tartine and dessert.” She drew out “obseeessed” in that classic millennial cool girl vocal fry. I laughed, “well, I wanted something savory and something sweet” we smiled and went back to our separate work. I looked at my plates and wondered if it was too much. I checked in with my body, my mouth watered and my stomach asked for a little more. I had a little more on my plate, perfect. I was surprised by the comment but I guess the 90s really are back. I snuck a look at this woman’s frame and it struck me that I might be so taken with her because she reminded me of my mom.

My mom died of breast cancer and my dad died of a heart attack, so gender normative of them. I suppose it could’ve been ovarian cancer and testicular cancer, but really what’s more feminine than breasts? And maybe it’s just because I saw my mom battle cancer for 3 years but it doesn’t seem like a manly disease. Don’t get all offended by that, if you see being feminine as a weakness that’s on you. Most men will never be half the woman my mom was. Good or bad, wasting away is very classically feminine.

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I got this message about a photo I posted of Matt in his wheelchair squaring off with a delivery bot in Hollywood. I was surprised to get the message, I’m not naive enough to think I own anything I post on my instagram stories. That image belongs to the game now. I responded “oh sure!” but something about the message stuck with me. The more I thought about it the more annoyed I got. Not because they wanted to use a picture I took, engage with my content, please. It was the “I thought,” it reminded me of conversations I’ve had with Matt about writing.

Matt has trouble ending a piece, a sentence, a thought. That’s why vlogs were so comfortable for him. When I help him with a poem, my most influential edit is telling him to stop. He loves a run on sentence full of side quests and references and sources. He wants to take exactly the idea in his head and transfer it to your head. I know that’s not possible, I don’t want it to be. I like to leave some things up to the reader. I guess reading Barthe’s “The Death of the Author” in college had an impact. Which is funny when put in the context of an autobiographical writer.

Honestly, I think it’s a confidence thing, I don’t think I’m smarter than my audience. Matt, well, let’s say insecurity is not his issue. On my worst days I’m very insecure, on my best days I’m very secure in the idea that you get it. I believe that we all have our own unique experiences in life. Every day I take in information, second by second, minute by minute, hour by hour. My brain, which has been chugging along with me, processes that information according to what it has learned and experienced on the way. I cannot possibly know the same things you know because I’ve been busy with my own journey, meal, knowledge, whatever you want to call it.

On the other hand, because our knowledge is broken down so infinitely, we all know the same thing, nothing. Because each of our experiences are so particular and so unlike anyone else’s, they are pretty much the same. When I think about the spectrum of collective consciousness to individuality I like to think of my four sisters. If I am looking for someone with the same life experience as me, they are as close as I am going to get. Yet, we have vastly different perspectives. No Doubt said it best

So different

Yet so the same

Two sisters

Only have their parents to blame

In fact, stop reading this, just go listen to Different People.

Ok, fine, I’ll finish my thought. Yes, my sisters and I all have a lot of similarities. We share a dark humor, can do attitude and road rage. But some of us talk rapid fire, others take languid pauses, some of us constantly seek online validation (ahem), others are basically off grid. When I see our differences, I don’t imagine other people are even more different, I imagine others are the same and different from me in just as many ways. You might as well all be my sisters.

Today I was in the kitchen taking a break from making my daughter tahini and honey toast to get down on the ground and snuggle with her. As I pulled her into my lap and pushed my feet against hers I told her “you are a piece of me living outside myself and I am a piece of you living outside yourself and we are also our own selves.” I nuzzled and kissed her cheek. “What’s so amazing about that,” I said, “is that it is the same for all people. We are all connected and all separate. You are a beautiful reminder of that.” Yes, I talk to my less than 3 year old like that.

So when that person messaged “I thought it resonated with me” I got offended. Have a little faith in your perspective. I believe you get it and we are connected but the qualifying “I thought” feels like a hand pushing my experience further from yours. Did it resonate or didn’t it? Did you feel an echo? It is your experience, only you can answer these questions. But on the other hand, maybe you can’t. Maybe we can. I think that was my thought.

Today is my dead mom’s birthday. What a sentence. Hi, Mom!

No way in hell am I going to use an speck of that energy to stop myself, fuck that. We are only on this earth for a short time, another lesson I learned early. I took his lesson into account when I joined the Cross Country team in High School. Yes, running to nowhere, what a thing to use my energy and short time on this earth doing. I enjoyed it, the nature, the solitude, the feeling of using my body, pushing it beyond what it tried to tell me it was capable of. I was a fan of the Jens Voight approach, “shut up legs, do what I tell you.” Nobody ever told me to “listen to my body” or that my “body keeps the score.” Let it keep the score, it’s losing. I was winning, I was constantly praised for being strong, for having great will power, for being independent.

Anyway, I used to jog in place at stoplights to avoid losing my inertia. I was one of those weirdos. “An object in motion stays in motion, an object at rest stays at rest.” This is now the mantra on repeat in my head as I feed the dogs, unpack boxes, pack lunches, make breakfast and do laundry. I don’t stop, I collapse, I fall apart. The collapse is unbelievably frustrating. It fills me with furry and anguish. I didn’t rest, so why didn’t I stay in motion? Oh yeah, I’m not in a vacuum. Which reminds me, I need to vacuum up the glitter Hazel found while we were unpacking and insisted on playing with. Before getting to the next task I make sure to beat myself up for failing to do the impossible.

We just moved closer to Hazel’s prek. When we moved from East Hollywood to North Hollywood last year she had already enrolled in a school in East Hollywood. Side note, the name “North Hollywood” is misleading, you might think it means the northern part of Hollywood, but it actually means north of Hollywood. Anyway, I had originally thought we would just find a nursery closer to our house next year but we fell in love with the school and Hazel has a bestie there. Plus our friends live around there and it’s more walkable/rollable. Hazel was always asking me with puppy dog eyes if we could walk to school or a restaurant or park and it broke my heart to have to say no.

So I searched for a new place for months and finally found one that was accessible, large enough, dog friendly and close to her school. Then I packed up our life and moved it. Well, I hired movers, but it still wasn’t an easy task. Actually, I’m still in the process. There are still boxes all over the house and every time I open one Hazel urgently needs everything in it. In between I have to take Matt to appointments, take Hazel to school, volunteer at the school, change the sheets for the ten thousandth time, change the address attached to everything, and I would so desperately love to write. It seems insurmountable, but I just have to keep going and once I’m done I can rest. Or do one more thing because if I have enough energy to stop I have energy to keep going. After all, I can do anything for 10 seconds at a time, then I start a new 10 seconds, thanks Kimmy Schmidt.

But why?! To give Matt and Hazel a better life, of course. But don’t I deserve a better life, any life, too? No. Ok fine, if you can’t agree with that, surely you agree that a life with a content wife and mom would be better for them? I guess. I think I missed the point of the kinetic energy lesson. The beauty in it is not pushing myself as hard as possible, but to listen to my energy and let inertia carry me when I can. To go with the flow, especially my menstrual cycle (shout out to my menstruating readers). To coast and cause less friction. I just moved the friction inward. I ended up with a battle between my mind and my body. It’s not truly kinetic energy if my mind is pushing my body.  Also, and this one is hard to unlearn, I am not an object. I am not a tool, simply here to be used up, I am here to feel and experience and love.

So I’m sitting for a bit with my feet up on an a table covered in monopoly pieces and a record player and an empty bag of one of Taylor Farms chopped salad kits. I’m sitting and writing, because it’s something I love to do. There are boxes around me but I’m unpacking some thoughts. We are only on this earth for a short amount of time and I’m going to spend that time doing things I love, and occasionally unpacking boxes. And I’ll probably learn this lesson again in a couple of weeks.

ME: That’s true.

HAZEL: People aren’t fun, the world is fun.

I smiled and looked over at Matt in the passenger seat.

MATT: I know what you’re gonna call your next piece.

He was right of course, the words stuck in my head but I wasn’t sure what to do with them. Then a few days later she was “having a hard time” aka “asserting her autonomy” aka “shrieking in my face”

HAZEL: GO AWAY!!!

I searched for the right words to avoid shouting “FINE! I WILL” and walking away. I reached for something I heard my sister say to her two year old.

ME: That’s not like you, Hazel. You’re kind.

HAZEL: I’m mean!

ME: No, you’re a sweetie. You’re just having a hard time and taking it out on me because I’m here.

HAZEL: I am mean!

ME: No you’re just acting mean.

Then I heard her take a beat, as she digested that.

HAZEL: I act mean and I act nice.

Damn, was my two year old about to school me on Hobbes and Rousseau? Between the two she would probably agree with Hobbes, not the overly pessimistic interpretation that “man is evil”, but that our goodness is circumstantial. She might also go on to say that our badness is also circumstantial, that group atrocities only happen in complex societies, complex enough to hide any one individual’s actions.

She was saying that she is not inherently good or evil, she simply is. Like Hannibal Lecter. To expect her to be good to her core is too much, she is simply reacting to the world around her. She is part of a whole and she does her best but in the grand scheme of things she is a speck. She knows I don’t mean that she needs to be always good, that we are only human and I want her to be a full and complex person, but the reminder is useful. At the most she could be a pivot but she cannot be a movement in herself. Ok maybe I’m getting ahead of myself, she is two.

I’m just trying to teach her the basics, like be kind. But when I teach her to be kind I like to focus on how it will ultimately help her. I don’t tell her to be kind because of some outside force. I don’t tell her to be good so she doesn’t go to jail or so she does go to heaven. I tell her that to me, being kind feels good. I tell her that sharing can be fun because you have someone to play with. I tell her apologizing is hard in the moment but in the long run it might feel better because you can move forward. I tell her “please” is the magic word because to me it makes helping her feel easier. I tell her we are all part of one and when one of us is hurt we are all hurt and helping others is ultimately helping ourselves.

I try not to indoctrinate and make it clear that these are my opinions, not facts. I try to ask her questions to see how she feels, rather than telling her how she feels. But I suppose along the way I’ve been teaching her that we are interdependent. I believe it so strongly and it’s so much a part of our daily lives that it probably comes across as fact.

The other day we were at Astro’s Diner and Hazel played a copycat game with Matt.

HAZEL: Do this Daddy

She raised one arm in the air and Matt copied her.

HAZEL: Do this Daddy

She hugged herself and Matt copied her.

HAZEL: Do this Daddy

She opened both arms out wide and Matt opened his right arm out to the side. My heart broke a little but I didn’t say anything.

HAZEL: No, do this.

She again opened up both arms out wide and Matt opened his right arm only

HAZEL: No, this!

I got up and stretched Matt’s left arm out to the side. She looked at me and stretched her arms out.

HAZEL: Why can’t he do this?

ME: He can’t move this arm on his own, but he can when I help him. Just like you can’t reach the top of the fridge on your own, but you can if Daddy helps you. Just like I can’t sleep in and take care of you, but I can if Daddy helps me. Nobody can do everything on their own.

I moved his hand to pick his nose.

ME: Daddy can’t pick his nose with this hand without help and you can’t eat it without help.

I moved his hand towards her and she giggled.

MATT: Go ahead, it's delicious, I made it for you.

She giggled more and leaned away. People are interdependent, it’s a lesson I keep teaching and keep learning. Alone we are boring, together we are alive, we are reacting, we are engaging. Depending on our surroundings we act nice and we act mean. WE are fun. Individual people aren’t fun, the world is fun. You can pick your friend's nose, with their help.

ME: I have two more images ordered. Can I schedule them with you?

RECEPTIONIST: What type of images?

My mind goes blank, I guess I’m nervous, I’m at the imaging center to get a second breast MRI. There were abnormalities in the first one. It’s probably nothing, most likely just from breastfeeding, but I have to be careful. My mom died at 44 and I am approaching 39. I did the math to figure out her age the other day and my eye has been twitching ever since.

ME: Oh, I thought you would have the orders on file. I think it’s an ultrasound? Let me pull it up and check.

I feel the presence of someone next to me.

ME: Sorry, I’ll step over while I look this up.

WOMAN: It’s ok, I just need a tissue. Ultrasound, hmm?

She turns to the receptionist

WOMAN: Do you have a tissue by any chance?

RECEPTIONIST: Sure, here you are.

WOMAN: I should probably get an ultrasound too. 

She says this like she is considering adding a muffin to her coffee order.

WOMAN: I sometimes feel a growling. (gesturing to her stomach) It’s not possible for me to have anything, since I’m biologically male, right?

RECEPTIONIST: No (laughing slightly)

I can’t tell if this woman is joking and has a really dry delivery or if she is serious.

WOMAN: Even if I was, like, inseminated?

RECEPTIONIST: No (nervous laughter)

WOMAN: With like an animal or something?

RECEPTIONIST: (shakes her head)

WOMAN: Ok, thank you.

She turns to the waiting room.

WOMAN: Can you imagine? Crossbreeding? I was crossbred with a dog and another person with a cat.

Oh, this woman is serious. Poor woman. Poor dog! I really hope it’s all in her head. As a woman who has a joke online about my “fur babies” I would like to officially apologize and clarify that is NOT what I meant! Anyway, I can’t digest that right now. Though I do often think about how we are all one, and how if one of us is sick, we are all sick. On that thought I find the order from my doctor and approach the front desk.

ME: It’s an order for a bilateral breast ultrasound and a mammogram.

RECEPTIONIST: Oh, you’ll have to call for that, we don’t do those at this facility.

ME: Ok, no problem, thank you.

I sit back down.

WOMAN: Oh, ultrasound for her breast cancer. Totally different.

She wanders out and I can feel the room exhale. I don’t love the automatic assumption that I already have cancer, but I notice my eye stops twitching. I guess there are worse things than getting some imaging done.

For example, we went to Disneyland last Sunday. After the Bluey play Matt needed to use the restroom, urgently. As we exited I approached a worker

ME: Hi, could you tell me where the bathroom is?

WORKER: Right down there.

ME: Is it accessible? (I gestured to Matt in his wheelchair)

WORKER: Yes, just go across right at the next rope.

ME: Thank you!

We walked/rolled down to the next velvet rope and turned to the worker there.

ME: Hi, we need to go across to the bathroom.

PETTY TYRANT: You have to go around.

ME: The woman up there said we should go across here.

PETTY TYRANT: You have to go down and around.

ME: Unless you want him to shit on the floor we’re gonna have to go across here.

She reluctantly unclipped the rope and let us through.

ME: Thank you.

For me Disneyland is not the happiest place on earth, closer to the most stressful. But I want to share as much magic as possible with my daughter while her imagination is expanding. And my husband’s reactions to her wide eyed happiness were almost as magical as her reactions themselves. I got to see the magic through her eyes and I got to see her seeing the magic through his eyes. Like a hall of magic mirrors distorting my grimace into a grin. Plus my sister and her family, and my cousin and her family were going. We all have daughters about the same age and though Disneyland is not important to me, family is.

But family and child-like joy didn’t stop the tightness in my chest and clenching of my jaw, as much as I tried to tell my body to shut up. It didn’t stop my constant worry of losing Matt or our daughter and not being able to find them. It didn’t stop my worry of him falling and having to get paramedics through the stupidest crowd on earth. I kept telling my body to relax, just go with the flow. It’s not like I was in charge of leading the group or anything. Which might be part of why I was stressed. I’ve always preferred being in the driver's seat. Which works out because Matt’s deaf in his right ear. But my sister and cousin both have season passes and there was no reason for me to get into the nitty gritty of what line to wait in next. Plus, I literally did not have the capacity. Matt and our daughter were keeping me plenty busy asking for snacks and toys and bathroom trips. The bathroom trips were the hardest. Matt was having one of those days of immediately having to go then not being able to go. Sometimes, shit doesn’t happen.

There was something else too. Both my sister and cousin are pregnant with their second. I am over the moon excited for them. But I always envisioned having at least two kids, so though I’m thrilled, there is also a part of me that is mourning the life I imagined and seeing them reminds me of that. I mean, we call our dogs Hazel’s brothers, but again that is NOT the same. It seems like everyone is pregnant these days. My sister, my cousin, one of my besties is having twins, Matt’s neurologist is pregnant, even my therapist is pregnant with her second! Oh and maybe that woman at the imaging center, we’ll have to wait until after her ultrasound. I can’t help but feel left behind. I know that only children can be very happy and healthy and normal. This is not about that. It’s just that my parents died when I was young. I was 11 when my mom died and 16 when my dad died. My sisters are my everything. And as I look at the odds, I worry my daughter will be orphaned early too. Who will be her everything? You can understand why it’s vitally important to me that she is close with her cousins. So I dragged our asses to Disneyland.

But as I looked around at my pregnant sister and my pregnant cousin with their toddlers, I worried that there wasn’t room for me and my family. That wasn’t true, but there is a story I tell myself that says me and my family are too needy. That we take up too much space and we require too much help without giving enough back. It’s a fucked up story and an old one. It’s a story I’ve been telling myself a long time. Since I was a child and needed to be the easy one in a loud family with a lot of drama. It’s a story that I’ve outgrown and I’m honestly ashamed of it. I’m a brassy standup comedian that tells jokes about her period and I’m afraid to take up space? It fills me with even more shame that I seem to be extending that story to my daughter and husband.

But I did look around at our crew, and it was a whole crew, 17 of us total. We had two other families with us, with a toddler and baby each, and looking at them I wondered if I would be lost and forgotten. I worried that everyone had their hands so full that I wouldn’t have the help we needed and I felt guilty for needing help. I worried we needed more help than they could give and it paradoxically made me want to run away. It made me want to take my family and go off on our own, to avoid being a burden. But I fought that instinct and my worry was proven wrong. Cognitive behavioral therapy, baby!

It turned out we had help every step of the way. My sister and brother in law helped me get the stroller and my daughter on the tram while I helped Matt navigate his way on. They also went ahead multiple times to clarify accessibility questions. My brother in law and Matt stayed with the girls while my sister and I got food from Minnie’s breakfast buffet. Side note, if you do go to the most stressful place on earth with toddlers, I recommend a character breakfast.

The characters come to the table, which the kids love, and the food is actually great. Plus it’s a buffet and you can take “coffee” (cups of mini waffles and muffins) to go. A tip I got from my very helpful sister. Next my cousin in law picked up my heavy diaper bag that I forgot on the ground after our first ride, and he carried it for an hour, refusing to let me take it back. Every time Matt needed to go to the bathroom my cousin or sister would watch our daughter. Our friends gave her snacks along the way and ordered apps while we were waiting for the elevator to take us up to the restaurant for dinner. We really were cared for and loved.

Then there’s the other part, my worry that I’m not giving enough back but I wasn’t useless like I feared. To toot my own horn, I’m pretty good with kids! On the way to the park I entertained my niece and daughter by practicing raising our hands in the air for rides. On the bus I helped them gather their screams into a magic box, which we opened once we got off the bus to avoid too many toddler screams in an enclosed space. I provided snacks too. In the line for Pirates of the Caribbean I pulled out a ziplock of cheese sticks, which were just sticks I cut from a cheddar block. The little ones were tickled by that for some reason. At dinner in Downtown Disney I chased down a couple kids that escaped our area. And on the bus back to the car I introduced my niece and daughter to a magic glue stick that stuck their butts to the bus seat.

My therapist says I am a natural teacher, I’m totally her favorite. I think the key to being good with kids is being curious and not trying too hard. I’ve got a dry sense of humor and a low voice. I’m not naturally singsongy or high pitched. I’ve tried it out of curiosity and when I do it kids don’t like it. But I've noticed it works for other people, it’s just not me. Kids appreciate authenticity. Plus, I know so much more than them and I can lord it over them. Kidding, I really don’t, it’s my first time here too and it’s nice to get a refresher on some of the early lessons.

That’s what they bring to the table, the kids, through them we see the magic of the world, even in a crowded theme park. When I see the wide eyed wonder on my daughter’s face looking at a giant Bluey mascot I remember how full of weird cool things this world is. Through teaching her I also stumble on where I am broken and how I might heal my own deep wounds, how I might let go of my own self destructive stories. I look at my daughter and what she needs to grow into a happy healthy adult, and through her I can see what the rest of us need. I would never want her to feel ashamed of needing help. We’ve talked about it, I tell her and Matt that asking for help is a strength. Knowing when you need help and asking, rather than pushing through impossible situations is a form of independence. If you simply wait until you fall apart, your loved ones will have to pick you up anyway, and it will probably be harder. When you really think about it, asking for help is helping your loved ones. Because we are all one, if you are sick so are they. Maybe, if we can all bring ourselves to the table fully and authentically, with curiosity, we can start to heal. Or maybe the world is full of dog fuckers.

HAZEL: I hate you, Daddy.

I hear it from the other room while brushing my teeth, I hear her giggling too.

ME: Hey, I was in the bathroom. Did you say you hate Daddy?

I look to Matt for confirmation

MATT: Yeah but she was joking so I don’t know.

ME: Ok, I don’t like joking about that word. Do you remember what I told you it means?

She looks at me blankly.

ME: You know when you say you love someone you feel it so so so so big? In your entire body and you mean it forever?

She nods.

ME: Well hate is the opposite of love. Like high is the opposite of low. Hate is a big big big feeling and you only say it if you feel it in your entire body forever.

HAZEL: In your entire body forever?

ME: Yes, it’s a serious word. I would say it’s a bad word, even worse than potty words. Like how teachers don’t want you to say potty words outside of the bathroom? This word is way worse than any of those.

HAZEL: Like poopoo?

She cracks a big smile.

ME: Way worse than poopoo I’d say. So we don’t joke about that. We can joke about potty words, if we’re not in a restaurant or at school, but not hate. Ok?

HAZEL: Ok

Poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop poop bowel movements bms diarrhea shit smear. After my last piece a guy commented “How often are you going to bring up Matt’s bowel’s? Some stuff should be private.” This was after I put a post behind a paywall because I thought there should be some barrier to entry for Matt’s privacy. Despite the fact that it was a piece about wanting to be seen and how caregivers need to be seen. Just so you all know, every post I publish is read to Matt first. He is very supportive of my writing, even when it doesn’t show him in the best light, because it’s honest. If he doesn’t have a problem with it, who are you to say it’s wrong? Also, he’s German.

He knew from the start that this was my art form. Some people make menstrual paintings, I talk about my life. I know nothing, but my life and experiences are as close as I can get to knowledge and the only way I feel I can communicate my viewpoints. When I met Matt I was performing autobiographical comedy. I don’t get to get on stage much these days but I will always talk about my experiences. If those experiences are shit, I will talk about shit. If I don’t talk about what’s going on it builds up. I feel heavy and constipated and then it comes out anyway, but instead of in an essay or in a comedy set, it pushes out the sides of things, like in a passive aggressive social media post. It’s called break through diarrhea entries.

Not only do I refuse to hide myself or my work as a caregiver just because it makes you uncomfortable, making you uncomfortable is kind of the point. If you aren’t thinking about being embodied and the eventual breakdown of your body and why that should make you invest in community, then I am not communicating properly. This is not my shit, or Matt’s shit, it is our collective shit. We are interdependent, for the good and the bad, from the start of life to the end. I’m seeing it clearer than ever because I’m what’s called a “sandwich caregiver.” Sandwich caregivers are people who care for children and adults at the same time. Mostly millennials who are caring for a parent and children. Coincidentally we do make a lot of sandwiches.

Sandwich caregivers deal with a lot of shit, literally and metaphorically. To say we shouldn’t talk about it, that it should be hidden behind closed doors, is to say that we should be hidden. Hiding caregivers and primary parents and the vital work they do is part of what got us into this situation. Yes, sandwich caregivers have exceptionally hard jobs. They also, if you don’t mind me saying, have unmatched insight into life because they get to see it soup to nuts all at once.

There is no way I am going to throw away that insight because some guy is uncomfortable reading that his hero shits. Anyway, if you know anything about Matt you know that he’s not into respectability politics. He is not about to pretend he’s anything he’s not to fit in with the elite. He goes out in his t-shirt, basketball shorts and crocs and the world loves him for that. He is the most human person I have ever met and he’s not interested in hiding it. Humans poop. We all do it. We are all born, we all die, and in between we poop. You owe it to yourself to face it so you will be prepared. You owe it to your loved ones to think about your body as theirs as well as yours. Who will clean up your shit if you lose control? Think about them and how you can best prepare for that inevitability. Just because you close your eyes and plug your butt doesn’t mean it won’t happen.

I don’t mean to scare you. I just want to shake your shoulders a little. I’m looking at my peers and I’m worried that with all the botox, face lifts and ozempic, people might be forgetting that we age. None of those things stop your insides from turning. In fact the ozempic might turn them faster. The singularity is a fantasy for the uber rich. Take care of yourself, and I don’t mean with the treat economy. Slow down, take care of your body, your mind, and your soul. I know that is hard to do and I’m privileged to even be able to think of it. But it doesn’t have to be huge changes, it can be small things. Like instead of scrolling, read, even if it’s on your phone. Instead of binging a tv show, go for a walk. One that will probably be within reach but may seem counterintuitive, help others. You might already do it begrudgingly or offload it to someone else, but you are missing out. Try it with intention and curiosity. Try to do it with love, in your entire body forever. It feeds your soul and it lets you see what’s around the corner. Poop. Poop is around the corner. Get used to it.

MATT: Well, it didn’t even work so it doesn’t matter.

I could not believe how chill he was being about this, oh yes I could, he was on ketamine. He says it “didn’t work” but I could see the effects plain as day, his pupils wide, his face emotionless.

ME: THAT IS NOT THE POINT!

I croaked at him, I was losing my voice and this wasn’t helping.

ME: I could’ve f…

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ME: Hey Hazel, yesterday when you fell Teacher Caroline said you got upset when she tried to help. Why did that upset you?

HAZEL: Why did that upset me?

She’s doing that thing where when she doesn’t know she throws the question back at me, frustrating, but I can’t deny it’s a good tactic.

ME: I don’t know why her trying to help upset you. Were you embarrassed or frustrated?

HAZEL: I was frustrated.

ME: I totally get that. Because you thought you were better at running than that, right? It was frustrating to fall when you thought you had mastered that. You’re a really good runner.

HAZEL: Yeah.

ME: You are a great runner, but everyone falls sometimes. Even Mommy and Daddy fall sometimes.

HAZEL: Like in the street! And the neighbor helped you and the other neighbor helped me.

She is talking about a time when Matt fell while we were practicing walking. It’s happened a handful of times and this was the scariest because we were in the street and Hazel was with us. Luckily the neighbors were outside and they helped me get Matt up.

ME: Exactly! And the neighbors helped us. And you know what?

I look at her in the mirror like I’m gonna tell her a secret.

ME: They liked helping us and it made us closer neighbors. If you helped someone after they fell, like Alex, if Alex fell and you helped her up, how would you feel?

HAZEL: Happy

ME: Right? Helping feels good.

She nods looking out the window.

ME: And if one of your teachers fell, you would help them up, right?

HAZEL: Yeah, I would help…

She at this point lists every adult that works at her school and then starts listing the kids.

ME: Yeah and they’d want to help you too. Because they care about you and it feels nice to help.

HAZEL: It feels nice to help.

ME: So if you fall and you feel frustrated, and need a moment it’s ok to say “I need some space please.” But use your kind voice because they are not judging you, they just want to help. The same way you want to help them. Then maybe after you take a breath you might want a hug or an ice pack or someone to look at your boo-boo. And if you do want that help, just know they would like to help you.

I’ve been reading a lot of books on caregiving, because that is my life. A lot of them talk about how hard it is and how everyone doing it gets burnt out. But right now I’m reading “When You Care: The Unexpected Magic of Caring for Others” by Elissa Strauss. She uses the term “caregiver” to mean parents as well as those taking care of people with disabilities, illnesses or the elderly. She highlights the positive aspects of care, and talks about our need as a society to value care. Not just as “the most important job in the world" but actually value it as rewarding work worth competing for and, in Capitalism, compensating. Because we know if people are doing it for free or for cheap it’s not truly valued in this system. In the chapter I’m currently reading she talks about Darwin and how he didn’t actually say “survival of the fittest.” Part of why he studied was because he wanted to understand why caring was so intrinsic to human nature. He had a daughter that died of tuberculosis, who he cared for physically and emotionally. Her memory and his love for her was etched into him long after she passed, he wanted to understand why. He learned that caring is a biologically beneficial trait. Put simply, when you care for your offspring they are more likely to survive and in turn care for their offspring. But that’s not how we experience it, we experience it as love and compassion.

I believe deep in my soul that a more caring society could save us. As in save the human race from extinction and save our souls from damnation. Well, I don’t really believe in damnation. I do believe that the DMT trip when you die can feel like an eternal lake of fire, but that’s another essay. Since I was a child I’ve believed that being kind is the most impactful thing you can be. Being kind has been my most steadfast personality trait. It’s something I’ve felt insecure about at times, because kindness is often perceived as weak or boring, two things I’ve never wanted to be. But that perception is wrong, it takes strength to be kind and stand up for what’s right. It also takes awareness and an ability to step outside yourself. That ability to step outside yourself makes you anything but boring, because you can understand many viewpoints. Boring is having a single lens of the entire world, I have a kaleidoscope.

For example when Matt told me that he dreamt of Dracula in the hospital after his stroke, I wanted to see it from his perspective. He is terrified of death, a fear I don’t really share, but I understand. I assume this fantasy was his attempt to bargain out of that inevitable sleep. He has continued to bring up draculas many times in the last 2 ½ years. Side note, I won’t capitalize “dracula” from here on out because though the first encounter seems to have been “Dracula” himself, Matt now uses “dracula” as a synonym for “vampire.” I always ask the same question “you would want to be a dracula?” I simply cannot compute. I mean I can, I know it’s because he’s terrified of death and also craves the strength he imagines comes with it. Being a bat would be cool too. I see it from his side, but I wish he could see it from my side too. To me, the idea of becoming a vampire and living forever is a fucking nightmare. I’ve never been into life extension or the singularity. I believe life ends for a reason. Life so far has been hard, it’s been beautiful, but I can’t imagine a life where my shift is never over. I’m not a big fan of sequels, let’s wrap it up already. Plus, the idea of draining others for my sustenance is antithetical to my entire identity.

We had this discussion the other day at the allergist after he brought up draculas again:

ME: You would want to be a dracula?

MATT: Yes!

He makes a dracula face at me, the shadow of a soy face.

ME: But how would you eat?

Again he makes the face.

MATT: Remember the nurse that I hated in the hospital?

He’s joking but I also feel a bit nauseous at the thought.

ME: I know you’re joking but that’s hardly fair. Wearing Cookie Monster scrubs and being bad at drawing blood, does not deserve a death sentence.

MATT: She doesn’t need to be dead!

ME: You want to change that nurse into a dracula?! I suppose she’d be better at drawing blood.

Matt laughs loud, I love making him laugh.

ME: Anyway, she would be dead, the undead. I can’t believe you would want that. Wouldn’t you feel bad?

MATT: How about a vigilante dracula?

At this point the allergist’s nurse came in to prick his back with a bunch of tiny vials. Matt has been having stomach issues, more than his normal amount, and we are seeing all the specialists we can think of. She leaves the room to give the tiny dots of stuff time to irritate Matt.

MATT: Oh man, it already itches.

ME: That’s the garlic.

I say dryly. It takes him a second but I get a big laugh. It makes me blush.

MATT: What about a vigilante dracula? What if I feed on CEOs or billionaires.

ME: I’d love it if you ate the rich, but I don’t think that’s possible. You’d have to kill innocent people to get to them, like security guards, or door men. How could you live with that?

MATT: I could turn them!

ME: That’s not fair, they didn’t ask for that!

He shrugs.

ME: I would be so mad if I was turned into a dracula. I would consider that murder. If I became a dracula I would…

I mime staking myself in the heart.

ME: It’s not even a sin if you’re already dead. It’s the moral thing to do. In fact if you were a dracula I would…

I mime staking him in the heart. He mocks offense.

ME: It’s the moral thing to do. If you became a zombie you’d want me to double tap you in the head, right?

MATT: But I wouldn’t be an unthinking zombie!

ME: There’s no difference. For the good of humanity, when your loved one joins the army of the undead, it is your duty to kill them. Though again, it’s not really killing. More like terminating.

As I write this and I think about how this conversation will be read and the symbology of vampires, it dawns on me. No pun intended. But duh, Matt already thinks of himself as a dracula. He thinks he is a vampire, only a draw on me and others. In his mind, his justification of dracula is a justification of his own life. That is simply not true, but I think he has believed this a long time, even before the stroke. If I were to armchair theorize I would say he didn’t get the unconditional love required to be a securely attached individual early on. He has fallen into a belief that he needs to be selfish to survive. All the while hating himself for doing what his gut tells him is necessary. He thinks survival in and of itself is selfish. He is so focused on this belief that his mind reinforces it every chance it gets, looking for every instance that he takes from others. But it is missing everything he gives. That’s just the grass and he’s looking for the tiger.

But I see the symbiosis, I see the ways he gives. I see the way our daughter lights up when he comes to her ballet class. The way she giggles when he “gets her” with his grabber. I see the way he feeds my soul when he laughs at my dumb jokes. The way he holds me when I’m feeling down. I see the lightness he brings out of his friends and the pure joy they feel in his presence. I see the many many stories from listeners to the podcast and his live streams about how he helped them through hard times. As well as the stories of how he changed the trajectory of people's lives for the better. And if we want to get capitalist about it, he is literally the breadwinner for our family, always has been. In fact, he helped create a podcast that creates his friends' livelihoods too. Not on his own, but it would not be what it is without him. Their producer, Chris, would not be working with them if it wasn’t for Matt hearing him out, and thank God for that. Chris has a whole ass baby now, who is partly supported by the podcast. Which is nothing but excellent news because Chris and his wife, Molly, care deeply. More of them is good for everyone.

Not only does Matt help in all the ways mentioned above but, like I told our daughter, people like to help. It is a gift to give people the opportunity to help. Not only does it feel good to help someone you care about, it is a biological imperative for our species. Humans are social creatures, that is why we have survived so long. We live in an interdependent ecosystem. The real draculas are the ones who claim to be “the fittest” because they aren’t afraid to step on people to get more. The people not giving care to anyone but themselves. If you read my piece “Cool Car” you know the type. They are the ones leading us to fiery damnation. They are the undead army who, for the good of the species, need stakes to the heart.

We are not teaching our daughter that she should only think of herself or that she needs to do everything by herself. She is learning that nobody does everything on their own. She sees me help her dad and she sees him help me. She sees our friends help us and us help them. She sees us help our community and neighbors and them help us up when we fall. I encourage her to help in small ways too, nothing big, but things like grabbing her shoes or carrying her lunchbox herself. It’s a blessing to see her proud smile when I call her “my big helper.”We are teaching her to care for others and accept care for herself. I think those skills will serve her well. She may not be the richest person in the world but that is not what I hope for her. The richest people in the world seem sad as hell. I hope she will feel useful, loved and content. I hope she will feel no draw towards dracula because she is happy with the life and love she has been given.

HAZEL: What’s this song about?

She has been obsessed with what songs are about recently. Which, as a lyric girl, is so fun for me. So far we’ve talked about emotions via “Heatwave” by Martha and the Vandellas, being embarrassed about emotions via “Big Girls Don’t Cry” by Fergie, friendship via “You’ve Got a Friend in Me” by Randy Newman, and of course, thanks to Sir Mix-a-Lot, we’ve talked about liking big butts. Right now we are in the car on the way home from school. At the start of the ride I had turned the iHeart Radio algorithm to Nelly Furtado’s “I’m Like a Bird” and let it take us on a journey. Eventually we ended up at Natasha Bedingfield’s “Unwritten.”

ME: This song is about how the rest of your life is always in front of you. Which is especially true for you, because you are young, but it is actually true for everyone. It’s not the end until it’s the end.

I look back at her in the mirror, that was way too many words. I grab out phrases for her pausing to explain.

ME: She says “staring at the blank page before you” like when you take out a new paper to draw, it’s a fresh start. “Open up the dirty window” meaning don’t be afraid to get your hands dirty. You’re great at that!

HAZEL: Like when I paint with my fingers!

ME: Exactly! And when you’re not afraid of getting messy you have more fun.

HAZEL: Like at school. 

ME: You get so messy and so much fun at school. Because you’re brave!

She smiles out the window.

ME: And she says “feel the rain on your skin” similarly, meaning don’t be afraid to get a little wet and uncomfortable, because if you’re focused on being comfortable you’ll miss out on the fun of life. Like when you jumped in puddles outside our house even without shoes on. You knew Mommy would help you dry off after, so you could just focus on the fun.

HAZEL: It’s fun to jump in puddles!

ME: Heck yeah it is! Then she says “live your life with arms wide open” which means embrace life, be ready to give it a big hug. But also don’t live out of fear.

I look back at her, she is looking out the window, processing.

ME: Do you remember that girl at the park who wouldn’t share her toys?

HAZEL: I asked if I could play with one of her barbie’s and she said “no!”

ME: Yeah and then Miles asked if he could play with a toy.

HAZEL: She said “no!”

ME: Yeah, and what did she do with her hands?

HAZEL: She was holding all her toys.

ME: Yeah, she was holding all her toys. She had a lot, so she had to use her whole arms to gather them in the sand box. Was she playing with any of them?

HAZEL: No, she was just holding them.

ME: Yeah, she couldn’t even play with them because she was so focused on keeping them. You need at least one hand to play and hers were full. What do you think she was feeling?

HAZEL: What do you think she was feeling?

This is a new thing she’s been doing when she doesn’t know the answer to a question where she just parrots it back to me. Honestly, brilliant.

ME: Well, she was crying, so I think she was sad, and maybe scared.

HAZEL: She was sad.

ME: Yeah, was she having fun?

HAZEL: No.

ME: No, because when you’re focused on what you might lose you can’t enjoy what you have. Also, if she shared you could’ve played together. So she was missing out on new friends. So that’s why you “live your life with arms wide open” because if you live out of fear your life becomes smaller.

Fuck, I love having a daughter. She forces me to see the world through fresh eyes, it is a balm.

I’ve been thinking about friends recently. I talk a lot about mine and Matt’s community and how lucky we are and that is true, but it’s also true that not everyone stuck around. There are people we know and were close to before Matt’s stroke that have disappeared from his life. People I reached out to multiple times offering different ways to be involved, but never showed. My most generous reading of these people is that they are uncomfortable seeing Matt because they are afraid of seeing their own mortality or fragility. I get it, it’s scary to look in the mirror when you’re tripping on life. You may see something you don’t like, something that means you have to change, and change is uncomfortable.

But here’s the thing about life, uncomfortability is unavoidable. Matt would say this is Protestant of me, but I’d argue the uncomfortable parts of life are what make the pleasurable parts pleasurable. My exhale feels deeper after I hold my breath. My legs feel lighter after I sprint. The mountains wouldn’t feel so high if the valleys weren’t so low. Maybe I’m an adrenaline junky, but I prefer a rollercoaster with ups and downs. Ok, that’s enough metaphors. Maybe I’m wrong. Maybe I’ve been habituated to this way of thinking by being exposed to pain and loss early in life. But everyone I’ve met who disagrees, who lives life avoiding pain, is miserable.

I recently reached out to one of Matt’s friends we hadn’t heard from in a while. Not someone who disappeared, I try to go where the love is, but someone who was fading a bit. I was feeling angry and protective and helpless and to be honest, I was feeling abandoned too. I can’t be everything to Matt: wife, caregiver, physical therapist, occupational therapist, speech therapist, regular therapist, secretary, nurse AND friend. I said what I had been afraid to say, moving through my own discomfort of confrontation. But I reminded myself that I have done hard things before and I could do this too, no matter the outcome. I said some things and held my tongue on others.

I told them to call Matt. I didn’t hear back, but later that day Matt’s phone rang. I saw him see the call and the look of fear on his face, he groaned. I saw his fear of not communicating clearly, because of his aphasia. I saw his fear of failure and rejection. But his desire to connect won, his love for his friend overshadowed the fear. He picked up the phone. The first words were awkward but within seconds they were shooting the shit. It was maybe a 10 minute phone call but it brightened Matt’s whole day. I messaged the friend and I could tell they felt lighter. I also felt like a weight was lifted, or maybe I was just getting stronger.

If you constantly turn away from discomfort your emotional muscles deteriorate, you go deeper and deeper inward. Your world gets smaller and your walls get thicker. That type of comfort is fleeting, it won’t be long until something else comes along to make you uncomfortable because what you’re really uncomfortable with is yourself. Maybe you’ll feel safe for a bit but what is the point of comfort if your comfort zone is so small that you can’t breathe? What is the point of toys if you have nobody to play with?

Open up the dirty window, you may find you can breath easier and someone might be waving to you from the other side. And in that practice of getting your hands dirty, you might find a longer lasting comfort. The comfort of knowing you can do uncomfortable things and come out the other side. You might even enjoy it and make new friends. If you read this and feel like you are living out of fear, take solace in the fact that the rest is still unwritten. Get uncomfortable now, so you can rest in peace later.

HAZEL: GO AWAY!

ME: Why?

HAZEL: NO, DON’T SAY THAT! I WAS SAYING THAT!

This is one of her go to sentences and it always makes me laugh, in my head. Not on the surface, that would be cruel when she’s having such a hard time. She’s thrashing around on the couch and I’m next to her just in case she falls. She is freaking out because her yogurt isn’t yogurting correctly. I’m not sure exactly what she wants but clearly she had some idea in her head and the yogurt is not cooperating. It’s not really about the yogurt though, it’s never really about the yogurt. She’s probably feeling crummy because she’s sick, plus she’s two

ME: Why do you want me to go? Are you embarrassed?

HAZEL: GO AWAAAAAAYYY!

ME: Are you angry?

HAZEL: YES! Go away!

ME: I’m not going to go away.

HAZEL: (high pitched screech followed by cough)

I know reasoning won’t work but I feel I need to tell her why.

ME: I’m not going away for two reasons. One, I want to keep you safe from falling. Two, I want you to know all emotions are ok and safe with me, I still love you, no matter what.

She looks at me briefly and I get my hopes up that I got to her.

HAZEL: GO AWAAAAAAAAAAY! (screech)

I wonder what the neighbors think. I look at Matt who is sitting in the recliner next to us. His face looks worried, as if to say “what is wrong with her?!” I look at him eyebrows raised as if to say “she’s two” which is what I always say. I’ve heard this is developmentally normal. Everyone knows about the “terrible twos” or “transitional twos” or whatever I’m supposed to call it to be the perfect mother who will never be criticized online. But I start to doubt myself. The screeches are so loud and she is clearly feeling so much. I wish I could help her. I wonder if we should take her in for testing. I don’t even know what for, but surely this requires a professional and not just me. I wonder if I’ve already fucked her up beyond repair. She has moved down from the couch onto the floor and is pushing and hitting me.

ME: Hazel, it’s not ok to hit.

She keeps flailing her arms and I hold up mine to block her. I feel bad for how easy it is. It must be so hard to have so little control.

HAZEL: (screech)

I look at my fitbit and realize it’s time to start getting ready for bed. I know from experience that there’s not a lot I can do for her at this point, it will come to a head when it comes to a head. Everything I say gets a bloody murder scream. Too much is happening. I need to change the scenery. So, I stand up and head to the bathroom. She pulls on me, letting her body fall backwards. Anticipating this, I catch the back of her head and lay it carefully down on the floor.

HAZEL: Noooooo don’t go!

ME: I’m not leaving, I’m just going to the bathroom.

I don’t know if she hears me because she screams throughout my talking. I reach out a hand towards her.

ME: Do you want to come with me?

HAZEL: Noooo don’t goooo!

My heart breaks a little looking at her. I have flashbacks to my mom prying my fingers off her car window as she tries to pull out of the driveway after a fight with my dad. Hazel tugs on my arm as I try to walk towards the bathroom.

HAZEL: Don’t gooo Mommy!

I turn towards her, arms open.

ME: I’m here, baby. Do you want to come with me? I can carry you.

HAZEL: Noooo go away backwards!!!

What does that mean? She wants me to walk away while looking at her? I turn and walk away from her. I immediately feel guilty, but I also feel angry that she thinks she can tell me what to do with my body. I remind myself that she’s “not giving me a hard time, she’s having a hard time” I roll my eyes at myself. Then I remind myself that not too long ago my body was her body too and she’s actively learning that we are separate.

ME: I’m going to start a bath.

HAZEL: NOOOOO! I don’t want a bath.

Though “noooo” doesn’t really convey the noise she makes. It’s high pitched, more like “noooeeeeeeeeeeh!” I start the bath with her pulling on me, careful not to let her fall.

HAZEL: I DON’T WANT A BATHEEEEEEEEEEEH!

ME: Ok, this is for me.

HAZEL: I don’t want a bath!!!

ME: This bath is for me. I want a bath.

I did originally run it for her, but hey, a bath sounds pretty nice right about now. If I have to be screeched at by a toddler, I might as well do it in a bubble bath. Plus she will have trouble reaching me to hit me in there. 

I get undressed and get into the bath. I wonder if she will want to get in too. She screams and lunges to hit me but I dodge her hand, moving just far enough away. The look on her face is like something out of a horror film. I guess she’s not coming in.

But does start to quiet down, still screaming but not as shrill. The bath and new scenery seems to help calm her. It calms my own frazzled nervous system too. I can think. I remember another regulation technique I wanted to teach her. It’s never worked for me, but hey, she’s not me.

ME: Rubber ducky, one yellow thing, towel, two yellow things

She is quieting down, sniffing, but curious about what I’m doing. I don’t acknowledge her interest and keep on with my activity.

ME: Toy boat, three yellow things, stars on Hazel’s pants, four yellow things, Peanut’s shampoo bottle, five yellow things!

She has completely quieted now. I keep going.

ME: Now I’m gonna look for five blue things. One, Hazel’s special soap, two, the bath bomb, three, Mommy’s jeans on the floor, four, the hand soap bottle, five, hmmm, I’m not sure

I look at her, we’re in this together, I’m Dora and she’s Boots. I smile excitedly

ME: Oh! The edge of the towel!

She smiles back at me and I give her a high five over the tub. I take a deep breath and she doesn’t yell at me, she follows suit.

ME: Hey. Are you ok?

HAZEL: Yeah, I’m ok.

ME: What happened that upset you with the yogurt.

HAZEL: The yogurt wasn’t coming out.

ME: I was a new type of yogurt and it wasn’t working the way you expected.

HAZEL: And then Mommy tried to help me and I said “no no no!”

ME: Yeah. And then things got kinda out of control, huh?

HAZEL: I said “no no no!”

ME: Yeah and you told me to go away.

HAZEL: Yeah.

ME: Why did you say that? We’re you angry or embarrassed?

HAZEL: Yeah

ME: I understand if you’re angry, it’s frustrating when things aren’t working the way you want. And maybe it’s annoying when Mommy offers to help when you’re still working on it. I’m sorry if I jumped in too soon, I know you’re a big girl and can do hard things. And you don’t need to be embarrassed. Your feelings are safe with me, I love you no matter what.

HAZEL: (nods)

ME: Would you like a hug?

HAZEL: (nods and melts into me over the tub edge)

ME: I love you so much.

We take a few more breaths and I get out of the tub and dry off. We are not doing bath time for her tonight and I’m ok with that. Tonight we are building emotional regulation skills, we can work on hygiene tomorrow. Well, not all hygiene will wait. I get my robe on and get her toothbrush ready. I pick her up and set her on the sink next to me.

ME: All of your emotions are safe with me. But you did hurt my feelings a little when you told me to go away. And I know you were feeling a lot, but hitting is never allowed, right?

HAZEL: I hit you and I said “go away!”

ME: Yes. So, now that we’ve calmed down, could you say sorry to Mommy?

HAZEL: I’m sorry.

ME: Thank you. I’m so proud of you, baby. Taking breaths and taking time to listen to what your emotions are saying and apologizing for mistakes, that’s not easy. Even Mommy has trouble doing that. But you are getting better and it will get easier because you are practicing.

We brush our teeth, do our night routine and I put her to bed. Then my phone vibrates. I look down to see a text in my sister chat from my little sister, who also has a two year old. It says “I’m having a really hard time parenting.” She goes on to tell a story beat for beat exactly like the one above, it’s like reading my diary. She tells us that she feels like she’s failing (because she said one not perfect thing). My heart breaks. She goes on to say that she wishes she could be more like me. I am aghast. I tell her that I just had a very similar experience and that we are not doing any better on meltdowns over here. Our older sisters chime in with their own stories from when their children were young as well as stories of how they are now. They tell us that this is not permanent.

I tell my little sister how I was glad she told us because I feel more confident that Hazel’s emotions are normal. I tell her how Matt reacted and how I was even thinking about taking Hazel to a professional. She confesses that she thought the same thing and when she told her husband he asked if they should get an exorcism. I laugh out loud thinking of Hazel reaching for me in the bath.

I am so relieved. I constantly watch my little sister with her daughter and admire how patient and loving she is. I strive to have the calm and abundance of love that she seems to have. To hear that she is struggling too feels unbelievably validating. To hear that our older sisters also faced little demons, sorry, toddlers having a hard time, and came out the other side feels reassuring.

I go to sleep that night and the next morning Hazel yells at me for taking her out of the crib “wrong.” Here we go again. But I feel a little more capable and less alone.

She is full on wailing, so wounded and betrayed by this interaction. My poor sweet sensitive girl. I do an immediate heal turn. There’s no way to explain this to her while emotions are this high. “Oh baby, I’m so sorry. Daddy and I were just joking.” I nudge Matt “tell her you were joking.” He looks back at her “I was just joking, baby.” She starts to catch her breath. I try to slip in a little explanation “it’s just we don’t like those cars, but we can like different things. Like how Daddy doesn’t like beans, but you and I do. If you think those cars are cool then they are!”

It’s too many words, she starts crying again. “Oh, it’s ok baby. We were just joking. It is a cool car! It looks different from all the other cars, right? It’s weird and we love weird!” She starts to calm and catch her breath. After a beat she starts replaying what happened. “I was having a hard time. I said ‘cool car’ and Daddy said ‘no’ and I cried.” She likes to replay afterwards, like a professional athlete watching their own tapes. “Yeah, but Daddy was joking, right?” I said back to her. “Yes, Daddy was joking,” she says, looking at me in the mirror and smiling.

Throughout the next week she continues to point out Cybertrucks and say “cool car!” At first I simply agree “yeah, cool car!” Then I add in a little nuance

HER: Cool car!

ME: Yeah, that’s one of those cars you like!

She continues to replay what happened when she first shared her love of Cybertrucks.

HER: Cool car! Daddy said ‘no’ but he was joking.

I look at her in the mirror and she is looking into the distance and nodding her head. She’s studying what happened and why we had that reaction and reminding herself of the explanation I told her. She’s soothing herself with this explanation. But she’s smart, the reason she keeps repeating this is because it doesn’t quite make sense. Our strong reaction didn’t feel like a joke to her. She’s reminding herself of what I said because she trusts me, but it’s not quite lining up. I know I have to explain a little more, but how do I explain that Elon Musk is evil? How do I explain that this man has enough money to solve world hunger but instead focuses on getting more money and power? How do I explain that he’s a racist piece of shit? How do I explain that he is a pedo who doesn’t see girls as human beings? How do I explain that he is a solipsistic narcissist who doesn’t see anyone besides himself as real and deserving?

ME: Yeah, do you want me to explain why Daddy said that?

I look in the mirror and she nods at me.

ME: It’s because the man who designed that car is not very nice, he’s not good at sharing. Remember how sometimes we help bring food to people who need it?

HER: Because our fridge is full!

ME: Yes, we are very lucky that our fridge is full.

HER: But the fridge is broken right now.

ME: True. But we still have plenty to eat in the ice chests and cupboards, right?

HER: We have yogurt drinks!

ME: Yes, and berries and mac and cheese. Lots of yummy stuff. And we bring food to other people because not everyone is as lucky as us. And everyone deserves food and a full tummy, right?

HER: Yes! I want a snack.

ME: Ok, I have string cheese or a tangerine?

HER: Tangerine!

ME: Ok, hold on while I peel it.

HER: Tangerine please!

I reach my arm back in that position only moms seem to know how to do.

ME: Here you go.

HER: Thank you thank you thank you!

ME: You’re welcome, baby. So everyone deserves to eat and the man who made those cars is not very nice. He has so so so much and he doesn’t share. But Daddy and I believe it’s important to share. Like when we were at the park and you shared your goldfish with Alex, because you had plenty and she didn’t have any. Right?

HER: And she gave me quesadilla!

ME: Yes, the day before she gave you quesadilla. Sometimes she has more and sometimes you have more and when we share everybody has enough! Because there is always enough, if everyone shares.

She nods and takes that in.

ME: So that’s why Daddy and I laughed and said “no” when you said that car is cool. It wasn’t really because of the car, it’s because the man who made it is mean and is not good at sharing. He also thinks people should be treated differently because of how they look, but we can talk about that later. You can still think it’s a cool looking car though.

HER: Cool car!

I look and she is pointing at another Cybertruck.

ME: Yup.

HER: But there is a mean man in there.

ME: (stifling a laugh) Yes, well not in there. I don’t know who’s in there. But the man who designed the car is mean. Like Jack in your book “If I Built a Car” designed a car?

HER: With the dome!

ME: Yes, with the plexiglass dome.

HER: A mean man built that car.

She is still looking at the Cyberjunk driving along next to us. They look like the improvised armored cars used by the Spanish Republic in the Spanish Civil War. But with less style, and those were home made. Cybertrucks look like a science fair project from a 5th grader.

ME: Yeah.

I still think Cybertrucks look dumb as hell and I can’t imagine Elon Musk building anything, but close enough. Anyway if your uncle or dad is having trouble understanding why Elon Musk sucks, feel free to borrow my script.

This is my morning routine:

6:27 Wake up and put on robe

6:30 Feed dogs

6:32 Turn on kettle

6:35 Pee while they eat (so they don’t follow me to the bathroom and wake up Hazel)

6:40 Make soylent/mushroom coffee drink

6:42 Drink it while making Hazel’s lunch and breakfast

6:50 Sit and breathe for 5 minutes

6:55 Set up activity for Hazel to avoid TV question (paints, track for bike, balance beam or animal adventure)

7:00 Check texts and emails and write to-do list

7:05 Hazel up, greet with smiles and cuddles

7:10 Give Hazel breakfast and eat leftovers

7:15 Let her play while continuing to eat

7:17 While she plays take my own meds and gummies

7:20 Get dressed

7:30 Start bath and bring in change of clothes and diaper

7:32 Brush both on our teeth and wash my own face while bath fills up

7:35 Check on Matt and empty urinals

7:37 Get Hazel in bath

7:40 Get her “mermaid hair” wet

7:41 Put in dandruff “bubbles” shampoo 

7:45 Play with bubbles or toys or bath bomb while washing body and nails

7:55 Add in regular shampoo before washing both out

8:00 Hop out of bath and run to show Daddy “naked baby”

8:02 Get Matt up for brain juice (put on boxers, shorts, socks, afo brace, shoes and gate belt) and get him up to brush teeth 

8:07 Get Matt’s breakfast and OJ with fiber and meds while he brushes his teeth and gets into his wheelchair

8:12 Get naked baby dressed, clean ears and fix hair

8:17 Play a little more/negotiate with Hazel about clothes

8:20 Put on Matt’s brain juice cap and connect it to wifi2

8:25 Goodbye kiss to Daddy

8:27 Get in car (Hazel does it herself) unplug car while she does

8:30 Buckle her car seat and hand her whatever food or toy she’s insisted on bringing in the car with her

8:32 Pull out of driveway

8:35 Voice to text caregiver about any need to know updates and schedule for Matt when they get there at 9

7:05 - 8:32 Do my best to make it feel like seamless play, don’t let her feel the rush.

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STRANGER: Did you break your arm or your leg

This was directed at Matt who was navigating stepping onto the curb with his caregiver, Gene. It’s doable, but not an easy feat. I was watching, critiquing in my head but trying not to backseat caregive. I was following behind with the wheelchair as we made our way to lunch. Our fridge has been broken for the last two weeks, so we’ve been eating out a lot. The stranger in question was a woman standing on the sidewalk, watching.

MATT: What?

STRANGER: Did you break your arm or your leg?

I didn’t hear what she said at first because I was focused on the task at hand. I couldn’t see her because we were in between cars and Matt and Gene were in front of me. I heard her say something and thought she might’ve offered to help. The second time she asked, I heard her. Matt, who was also very focused on the task at hand and who wasn’t expecting a HIPAA violation from a stranger, did not understand. I’m joking, I know that’s not how HIPAA works.

MATT: What?!

STRANGER: Did you break your 

I cut her off. I shouldn’t have said anything, she wasn’t even talking to me, but I’m protective of Matt. I thought the truth might shut her up and maybe shame her from asking any more invasive questions.

ME: He had a stroke.

STRANGER: Oh, he had a stroke.

Immediately after I said it, I felt bad. I didn’t need to take that tone, I didn’t know what this woman was going through. Then we were over the curb and helping Matt into his wheelchair. I finally got a look at the woman. She looked clean and put together. I was imagining she might be there asking for money. I was imagining she might be having a hard time and thirsting for human connection. But no, she seemed to be just passing by on her way to one of the stores in the strip mall. I don’t know, maybe she was having a hard time and thirsting for human connection. What I do know is I was having a hard time too, and I didn’t have more to give right then. Anyway, I didn’t need to worry about my tone, she didn’t seem to notice.

STRANGER: You know, he could have more strokes. The vaccine is causing people to have strokes.

I don’t know what to call the phenomenon of people explaining Matt’s medical issues to me. They bulldoze through without knowing that I, having spent nearly 24/7 with him since his stroke, am actually the leading expert on his personal medical issues. It’s like mansplaining but specifically for medical issues, “medsplaining”? I’m sure it comes from a place of care but it feels condescending and offensive. It’s like they see someone disabled and think “that person must’ve done something wrong, they must not know the things I know about having a body. Let me lend them my knowledge.” When really, like most things, it’s just a matter of luck. We will all eventually end up with some sort of disability, if we are lucky, the alternative is death. Anyway, people do this “medsplaining” to us all the time. Sometimes I can handle it gracefully, sometimes I break.

ME: I’m very well aware of his risk of further strokes.

I smile tightly at her, hoping she gets the hint. She does not.

STRANGER: Have you heard of [some supplement or other]

ME: We’ve had a lot of people recommend a lot of things, I’m not interested.

STRANGER: Well it’s, blah blah blah

I couldn’t hear what she was saying anymore because my heart was beating in my ears and I was seeing red and blurry, like I had low health in a video game.

ME: I’m not taking recommendations right now and it’s none of your business.

STRANGER: Blah blah blah

ME: It’s none of your business!

As we walked/rolled off I could hear her still talking to my back. She  was probably going through something, but so am I!

We got to the restaurant, put in our order at the counter and found a table. Matt smiled at me.

MATT: So, I didn’t understand. What set you off?

ME: I don’t like it when people feel entitled to information about you just because you are visibly disabled. It’s none of her business.

GENE: Yeah. It just wasn’t the time.

ME: Exactly! We were helping you up the curb and into your chair. And she wouldn’t take the hint.

MATT: Ok

ME: I’m sorry, did the way I spoke to her upset you?

Matt smiled big.

MATT: No, I loved it!

ME: Oh, ok. Well good then.

So what if right now everything’s wrong. If it makes him happy, it can’t be that bad.

I got a text message from an old comedy friend asking me if I could ask Matt if he wanted to be on his podcast. It’s not the first time that’s happened and it won’t be the last. Before Matt’s stroke this happened all the time and I hated it. Not that it’s an overstep, I don’t blame the people who ask me, they are friends, and it’s what you do in the entertainment industry. Shoot your shot. I just hated being put in the position of being Matt’s secretary or handler. But now that the universe has put me in that position, I can hardly blame a mere mortal for following her lead. What feels hard now, other than my slightly hurt ego for not being asked personally, is the nonchalant way people ask. As though getting Matt on a podcast is as easy as picking a date and sending him the link. But I guess they don’t know because I’ve never told them. So here it goes.

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I do want to draw attention to something though. My friend is a union teacher and she wants to strike, but she does not want to strike right now because she is protecting scared kids at school. Her students are Black, Latino and Filipino. Her school is safer than their homes at the moment because there is built in organization and communication. Organization and communication that she has worked on building explicitly for this purpose. She said it will take a lot of organizing and planning for teachers to strike. She also mentioned, and I agree, that more workers in the largest sectors of our economy will have to feel empowered to make that bold step. The most vulnerable workers in our society have a different set of risks in partaking in strikes like this. Many workers are spread thin because they are supporting family members who can’t risk working right now.

I do hope this strike builds momentum and solidarity. But, I think it’s important to consider where the workers taking care of our most vulnerable populations, and vulnerable workers themselves, are coming from. It’s also incredibly important to think about how the most privileged (myself included) workers are going to support people that can’t afford to strike. A lot of them have been on the front lines of this fight longer than we have and might have insight into how to move forward.

One thing I’m doing to help with the neighborhood safety question, that you are welcome to do too, is making sure I am connected to my neighbors and offering help. There are a lot of older folks in my neighborhood, so I’m giving out physical letters offering help. I’m keeping it broad as a neighbor intro, and leaving my phone number (happy to send you a template if you want). If you have a younger neighborhood you might consider a signal chat.

One of the most diabolical aspects of capitalism is how it isolates and alienates us. It’s not a bug, it's a feature. Consider this an opportunity to connect. Before we ask vulnerable workers to let go of their jobs, the only support they have for money and healthcare for their family, we should consider how we will catch them when they fall. I believe unions are where we should be looking to do this. We have strong unions in LA that are not afraid to strike when they have adequate time and planning. Unions that have connections to other cities for broader reach.

But of course, not buying shit is great for us all.

As always, help where you can, know your strengths and fuck ICE.

Love,

Amber

At the same time I try to be an honest version of myself. I am vulnerable and flawed and I like to show that. Partly because I drank the kool aid of SOCIAL media. We are all just humans trying to reach our tendrils through our screens and connect. Although, that's not the case anymore, there are a lot of bot accounts these days capitalizing on our human need for connection. And that brings me to my second reason for being “real” on social media. I am unique, complex and hard to imitate and that is valuable. In the creative industry our lives are quickly becoming the only things we can claim as ours.

Which, it turns out, works for me because sharing myself has always been my preferred creative endeavor. I chose shameless vulnerability as a career before AI started squeezing the life out of the creative industry. It scratches an itch, a millennial, middle child, abandonment issues, anxious attachment itch. If you don’t have that itch, God bless you, because I need an audience. So yes it’s a performance, but the performance is me or I am the performance, it’s hard to tell at this point.

Though it does feel good sometimes, it also feels terrible. Making my public facing social media profile so personal is a risk. If someone doesn’t like a post that means they don’t like me. I don’t like people not liking me, even if I dislike them, the idea of them not liking me is deeply unsettling. So, I end up curating what I share to avoid that feeling. I try not to, but the fear of judgement creeps in. Sometimes I don’t know what came first, my beliefs or the beliefs of my audience that I reverse engineered to be my own. It’s a mind fuck, but I’m too deep in to change course now and I’m honestly curious to see how it plays out. It’s like a highly volatile experiment where I am both the scientist and the subject.

Anyone who’s spent a significant amount of time on social media knows that it thrives on anger, judgment and fear. People hawk up the darkest, most hateful parts of themselves and spit them into the comment section. It can be shocking and painful. When Matt had his stroke plenty of people online wished him well, but people also publicly gloated. To be fair, I guess, Matt has publicly gloated when war criminals have suffered. That means he deserves the hate of strangers. People have made comments about my appearance. One guy got obsessed with my smile and wouldn’t stop commenting that it was too big and it must be fake. He commented on every post of mine for months. It seems small but it did get under my skin, I started second guessing myself when I smiled. Insulting someone's smile is a vile thing to do, it’s like stealing joy. But social media is just like that.

Knowing all of this I choose not to put my child’s face on social media. I want her to have the choice and wherewithal to know the weight of the choice of whether or not to be on social media. Whether or not to sell her soul. And yes, I put emojis over her face, especially in the beginning because it is a performance. The performance is saying that she is off limits, it’s a very clear communication to my audience that I am protective of her. I share a lot of the back of her head, but that could be misconstrued as accidental. I want it to be clear that it is a purposeful choice. You don’t get to have her.

Unless you know me personally, then please message me and I will send tons of photos and videos. She’s adorable and perfect and I’m dying to share!

Who knows why that is? That question is rhetorical. I sometimes look for reasons because I have unrealistic grandiose ideas of what I can control. Part of me thinks that if I could just understand WHY this is happening I could solve the problem. But I can’t, too much is at play, there are too many factors that I can’t comprehend. I am gifted, but the picture is too big and I am not omniscient, let alone omnipotent. All I can do is my part. Be generous where I can. Be open. Be loving. Be helpful.

In my last post I wrote about volunteering. Which I did get back to, by the way. I helped deliver food to be distributed for a mutual aid group. The next day a friend who is a teacher texted me about an informal ICE patrol to help parents feel safer dropping their kids off at school. I was able to send that request to the mutual aid group confidently, knowing I had just volunteered with them. I also sent it to my parent group chat and my ladies social group chat.

That is as clear as I can get about why it’s important to embed yourself in your community. We need connections now more than ever. Because it looks like things are going to further fall apart and we need to know how to sustain and protect each other. If we as a people can prove that we can protect and sustain each other better than the state, then we have the negotiating power to demand it change. Also, it feels good, grounding, like taking your shoes off in the grass.

Maybe this is all just cope and me trying, once again, to change things that are out of my power. But I figure I might as well try, because it wasn’t long ago that I didn’t see the need to be connected to anyone but myself. If I can convince even one person to step up and help, then it was worth it.

If you aren’t lucky enough to have that base you have to build it. You have to connect, to reach out, to grill. It feels more urgent to get on that grind so you can buy groceries and pay rent. Like you have to take care of yourself first, before you can help others. But helping others is helping yourself. Without love everything you build will be constantly crumbling. That’s why I want to get back to volunteering.

Have you ever helped a friend clean their apartment and noticed how much easier it is than cleaning your own? It doesn’t come with the judgment and dread and anxiety of your own mess. Whenever I think about helping I think about the allegory of the long spoons. If you don’t know it, basically it says that in hell everyone has really long spoons, no matter the feast on the table, they can’t feed themselves. It goes on that everyone in heaven also has long spoons, but they all feed each other. I know everyone is worried about having enough spoons, but we might be using our spoons wrong. She said to herself in the mirror.

When I got sober and joined a 12 step program the first two steps really threw me for a loop. Admitting that I was powerless and that there was a power greater than myself was a tall order. I didn’t need nobody or nothing. I walked myself into that room. Sobriety, if I chose to have it, would be to my credit and nobody else’s. I may not have done much with my life but it was all my doing. Everything that I had and didn’t have was my responsibility, my credit and my fault. Through the rooms and service and working with a sponsor I started to realize what a weight that actually was. I started to really understand that many hands make light work, and more than that, doing for others is easier than doing for yourself. Kindness is magic that way.

I had to come up with a higher power and I decided mine was the honey mushroom, specifically the one in the blue mountains in Oregon. On the surface these little mushroom caps don’t look like much, but underneath the surface of the forest floor they are connected, there is a vast network of fungal threads. Together they create the largest organism in the world, 3.5 square miles and weighing as much as 35,000 tons. Now, I don’t actually think this organism is God or it has any power over my life. It’s just a metaphor for my God, we are all the mushroom caps, living our lives and appearing to be separate. But under the surface we are all connected. My family, my friends, my community, that is my God.

But it’s hard to undo a lifetime of independence. I wanted community but I was a wounded animal. I would cry out for help then bite the hand that fed me. But I kept trying. When I met Matt I was 3 years sober and what drew me to him more than anything was his comfort in social situations. He was so comfortable that he could look annoyed in front of people, he would never hide it if he wasn’t having a good time. He never wanted to leave early, and escape into the cocoon of his bed, he could fall asleep at a party. He fell asleep at many parties. It seemed to me that the party was his cocoon, he was more comfortable there than alone. At first I thought maybe he was healthy and I was sick, then I realized we were both sick, just in opposite ways. He experienced abandonment early in life too. But instead of creating a neurosis of control and extreme independence it created an out of control, well, party animal. To an unhealthy extent, it didn’t take me long to see that. But that’s ok, I figured we could learn from each other. Yes, I thought I could fix him, but I thought he could fix me too!

Also, he had, still has, an amazing group of friends. One of the first hangs with his friends was grilling in his backyard. I don’t know if I’d really call it a back yard, it was a little bit of cement outside his back door under the deck of the wealthier people who lived above him. In NY there’s always someone wealthier living above you. But hey, my place had broken windows and no air conditioning, so I was happy to be grilling on a shady bit of cement. Speaking of broken windows, his friends were telling me a story about another time they grilled a month earlier. Matt tried to swat a fly on the window in the apartment’s shared hallway, and his hand went through the glass. Right at that moment his friends showed up and Matt had a geyser of blood coming out of his arm. One friend grabbed paper towels and wrapped it around his arm and they hopped into a car with another friend to go to the hospital. While they did that the others cleaned up the blood, patched up the window and started grilling. When Matt got back from the hospital they had burgs ready and music playing. I was in awe and I wanted to be a part of that.

And I did become part of it, they welcomed me with open arms. Slowly, through exposure therapy, I got more comfortable in social situations. Some of our friends would probably say they have seen me too comfortable at times. But I know they never judge and just want to support me. I feel the same about them. I know they will always catch me when I fall and I will go to the ends of the earth to catch them. And knowing I have their love and support makes the world feel closer, it makes me feel more connected to the greater mushroom. This is all to say, to the people who comment things like “maybe this is parasocial, but I’m really glad to hear Matt’s doing well.” I get what you’re saying and I think it’s important to nurture relationships with the people really in your life. But if you are reading this you are part of the same organism as I am, underneath the surface we are all connected. It is perfectly natural and healthy to want to see another mushroom cap do well. It is like wanting to stop your own bleeding.