The Collected Phobias

Fears of travel, food, the world, people, requests + demands

Our daughter, Edie. Oahu.

I have never been at ease with travel. 

Don’t get me wrong, I like the idea of travel. I like having traveled. I have traveled a lot actually. I like having met people and having had experiences in the world. (In the past tense.) It’s always good to see how other people live, to not feel like you are the center of the universe, to feel less alone, to feel the connections, the human vibrations, all of it. Travel can be life-changing, affirming and inspiring. 

But still, there is unease. 

I like cooking when I travel. I like browsing the markets for things I’ve never used in the kitchen and making a meal out of it. I like figuring out the flavors of other places, and buying cookbooks that offer a taste of local cuisines. 

I like cooking, I think, more than I like eating. 

Does anyone else feel this way? That the cooking is better than the eating? 

I like eating in restaurants but it’s admittedly not the food piece I love the most.  I love to know the markets, every kind from big bulky supermarkets to open air extravaganzas to tucked-away bodegas and the guy selling chilled and cubed mango on the street corner. I love watching how people shop and what they buy and where they go to source their food, and what the place offers in terms of flavor and access. 

I watch the old ladies. I ask questions. 

In Mexico I got in a long conversation about machaca with an older gentleman at a Tijuana Walmart. Machaca is this dried beef jerky that reminds me of pork floss, and is used in stews and stuffed into burritos. But the gentleman encouraged me to cook the machaca with onions, tomatoes and eggs, which I make on the regular now and top with slices of avocado and a mess of cilantro

Did I tell you about Vanida, a Thai grandma who I met in a market in San Francisco who  taught me how to choose the right papaya when it is perfect and then amid the melons and the mango, she dictated her recipe for Green Papaya Salad and I scribbled it into a notebook and have made it dozens of times now, and each time I’ve thought of her?

open air market. Hawaii.

fruit from the open air market on our airbnb counter. Hawaii.

Or one of our strips to Sydney, where David is from, I got in line behind this lovely Vietnamese lady who asked me about what I was planning to make with my purchases and after I shared that, I turned the tables on her and she told me about what she was making: stuffed bitter melon with pork. I went back and bought the ingredients and made the dish that night.

After a trip to Tokyo, I spent months trying to replicate a tan tan men I had there that I can still taste like the bowl is sitting in front of me, and is still elusive to this day. I forced the kids to eat Japanese breakfast for an entire Fall after returning from Hawaii. Fish for brekkie became the motto. 

But for all the ways I love to travel, there are more ways that I hate leaving my house. 

My friend Elizabeth calls it being a house cat. Doctors call it agoraphobia. 

House cat sounds nicer. 

+++++

Some of my people surfing this past weekend. Mission Beach, San Diego.

I am not agoraphobic in the extreme and I am not diagnosed, although I went through a period of a few years in my 30’s where my panic and anxiety grew unchecked so much I found myself being very confined. Operating in a pattern. Staying close to home. Getting stressed when I had to deviate from the plan. Not being able to work in offices, around other people, long before remote work was a thing. And needing therapy and meds to break it. 

But some residuals linger. But they are only residuals. Manageable residuals.

For people who really struggle with it, agoraphobia is a debilitating part of panic disorder. It can be extreme. 

“I’m feeling so horrible and just want to give up,” a woman wrote in a FB support group I’m in for panic disorder, “My daughter is having her baby shower tomorrow and I just can’t make myself go. I’ve been working on it since I knew the day it would come. I feel she doesn’t have a Mom anymore and my grandsons don’t have a grandma.”

Anxiety moves us, pushes us, it keeps us aspiring, progressing, being better. But when it becomes too much, it manifests into fears. And those fears stop people’s lives. 

“I'm 25 and have no family or friends to turn to really. Most my friends came from school and are busy now and haven't spoken in years, and given the nature of barely leaving the house it's pretty hard to meet any new friends, a young women writes, “Feeling so emotionally drained most of the time now.”

This is how anxiety works. 

Doing nothing is mentally exhausting. 

Living in your own house is mentally exhausting. 

Just getting up and moving around is mentally exhausting. 

Not giving up is mentally exhausting. 

Thinking about what you should be doing and feeling bad about all the ways you are failing is exhausting.

People with agoraphobia can also have, and often do have, other fears and anxieties and they can be stifling. 

“Today at work I wanted to buy a snack in the break room but saw too many people,” a young woman wrote in group. I walked back out. So I starved myself during lunch, let my anxiety take over and went home.” 

This feels familiar because we have one child who expresses anxiety this way. And turns out there is a whole group of people among us who are afraid to eat in front of or with other people. Knowing this helps me help our kid.

But I wonder how do people who are afraid of eating with other people get to benefit from being at the table with others?

How do we create space for them? How can a person make a space for themselves? Or does the table become a burden?

“I was like this throughout highschool. Too embarrassed to get food. So I brought my own food but I was also too shy to eat in front of people,” a man wrote. “I brought a small bag of grapes- easy to quickly pop into my mouth. So everyday in high school I ate grapes for lunch. lol”

So while I, with my own tendency to have anxiety, genetically gifted one of my kids this fear of eating in front of people, and probably also genetically gifted one of them with bipolar, I also recognize that I still a touch agoraphobic. 

I do not like to leave the house. 

I know why and have been through it all in therapy and now take lexapro, and that helps a lot with all the phobias, including my tendency to ruminate unproductively, be a little paranoid about the horrors that might possibly, maybe, someday, befall us. 

But there are also a lot of us who are pretty functional.

We shop the same markets, ride the same roads, eat in the same restaurants, have our routines. So much so that our panic might not be first and foremost in our minds. We have coping strategies, places we go and don't. I leave the house a lot actually. I take different routes. I get on planes. I do long protracted car rides. I have a therapist and meds and just in case I have a panic attack meds. 

But it is never comfortable. 

For instance, when traveling - like as I write this, I’m in San Diego with David, Raffi and Desi (Lucy and Edie have JOBS now and a life with us. Lord.) because David is at his show this weekend - I make a home away from home and get to know the area well, assess how to meet my needs, and then generally just use the airbnb as a home base and stay within a few blocks of the house. The last time we stayed in the Mission Beach area of San Diego, and David was at the theatre most days, I went pretty much from hotel to beach to a nearby amusement park to local restaurants (which tend to be a combination of expensive and shitty at the beach). 

I never even used the car. 

David instinctively knows to get us an airbnb in a place surrounded by places I can move into my comfort zone. 

On this trip, when Raffi and Desi’s biological aunt (their bio mom’s sister) came to pick them up for sun and swimming, I used my alone time to walk two blocks, eat two fish tacos on the beach, watch the sunset over the ocean, and came back to the airbnb where I got into bed with my computer to write, take an edible, and only got out of bed for bathroom and water breaks. 

It was absolute bliss. I opened the windows wide to feel the ocean breeze flutter the cold sheets. Bliss, I tell you.

I like to be home wherever I am. 

Desi, our youngest at 7, never lasted at Aunt Julie’s hotel. Her intense panic kicked in. Not surprisingly. 

I have never met a kid as anxious and stressed out as Desi. She cannot go to school. She cannot sleep without us. She is super-controlling around food, with us often cooking several meals for her before she feels comfortable eating one of them. A lot of her food is the same, obsessively the same, multiple times a day for weeks, months at a time. She is currently being observed for a kind of Autism Spectrum Disorder called PDA Pathological Demand Avoidance, which so clearly exists in her, but is not officially recognized in the US. (Of course.) 

For Desi even going to a dance class or a playdate can be too much. 

Even a request to put sunscreen on her back met with anxiety and a desire to get out of doing it. The most basic requests like combing her hair can be met with extreme panic, which is why we keep her hair short.

In kids like Desi even asking them to do something simple, making a request, especially a demand, pushes their anxiety into overdrive and they shut down, panic, set the world ablaze with their resistance and their anger, anything to get back to their comfort, their preferred activities, their calm. 

After she cried and panicked and we tried to calm her down on Facetime, Aunt Julie brought her to our airbnb home base around 11. She had boogie boarded in the ocean, ate her weight in pizza, went swimming in the pool. 

She crawled into the airbnb bed next to me, and was out before her head hit the pillow.

+++++

Desi finally allowing David to put sunscreen on her.

If I were on city arrest and could never leave Vegas again, I’d be fine. 

If I were on house arrest but allowed to go to stores, so I could cook for my people, also fine. But David and the kids wouldn’t be.

So I travel. And I find ways to enjoy it.

When the pandemic hit, I was given permission to stay home. In fact, since we all had to do it, there was no pressure to take anyone anywhere. For like the first time ever, the agoraphobics had refuge. 

I can’t quite explain how freeing that was for me. 

The minute, the second I figured out we were going to be homebound, a relief set in that I couldn’t even explain. I relaxed. I could stay at home and not feel obligated to leave. And the longer it went on, the calmer I got, despite the hell the pandemic created in the world.

No more silently stressing about, and feeling discomfort, about the next trip, months out. No one could make me leave. We all had to be there… It felt like, well, freedom.

I know other people suffered. Badly. I saw that from the food pantry in my front yard. But I had permission to do the thing that made me most comfortable, be with my people and stay in my home-base and on my preferred routes.

+++++

Eating at the chaotic table of love + friendship. Notice no one is sitting calmly.

I don’t like to ruminate on the agoraphobic parts of me. 

Although I like staying home, I know it’s not good for me or our family. So I push. I travel and create little homes-away-from-home. Not everyone can push, and I feel fortunate to have a lot of support and people kicking my ass so that my phobia is mostly something “in my head.” A little voice that sometimes pushes me and sometimes I push back. For a lot of other people, agoraphobia can be severe and agonizing and just getting out to the store or to see a friend or to a job is somewhere on the level of the heroic. 

One of the things that I figured out while writing this piece is why eating dinner together has not worked out so well for our family in the last couple years. I had been feeling like a bit of a failure around dinner time. But these last few years have brought us bipolar, along with severe conditions of ADHD, panic and control-driven food issues, developmental disabilities becoming more pronounced, and now autism and panic disorder.

How can this group of people be expected to sit around a table, hands folded, reaching for sides and laughing uproariously at each other’s jokes like we exist in some commercial or movie?

lots of finger foods + things that dip help. But it’s not the ultimate solution.

So I want to explore what happens at “the table” when special needs are involved. What is your table like?

How have you changed things up so they work for your family?

Are you inspired by the images of people eating together at the table or is it some unachievable utopia that you might never get to?

Make-your-own-bowls work well for us.

Make-your-own-sushi always helps.

When is the table good for everyone in your household?

I’d love to hear from you. I might write about this here and would love to incorporate your stories. Up for that?

Because we don’t design the family to meet the house. 

We don’t design the person to fit the trip. 

We don’t design the family to meet some grandiose ideas about what happens at some mythical happy-all-the-time table. 

Human needs come first. 

_____________________________

A photo of me in my happy place, at home with my people and Tom The Turkey.

The title of this piece is a play on Esme Wang’s The Collected Schizophrenias which is a wonderful book. I highly recommend. It’s about her struggle with schizo-affective disorder (think schizophrenia + bipolar together) and what it means to be sick, to be well, to be institutionalized without consent, to be controlled for being unwell, it’s a book about who has control when you have a mental illness. You’ll learn some things. I highly recommend.

Also, I’m serious about hearing your stories about how you manage your table with the special needs in your household. That can look like a lot of things and I’d love to hear those stories and maybe incorporate them into a later newsletter.

As always, thank you for reading. xo Kim