KINSHIP SNACKS: How To Introvert While Chronically Ill and On Vacation with Children

Free snacks today, and a screamin’ deal! Plus: helping people feel included; building emotional courage; starting a neighborhood group chat; cute 2-year-olds celebrate the best thing about Costco.

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Carrie Brownstein would never let a screamin' deal pass her by.

How to Introvert While Chronically Ill and On Vacation with Children

Because so many people with disabilities and chronic illnesses struggle financially, I’m skipping the Kinship Snacks paywall today.

Over the past several months I’ve heard from many Auntie Bulletin readers who don’t have kids due to sickness or disability. If this includes you, I invite you to say hello in the comments and share your insights about Auntie-ing, travel, and disability. Let’s find each other.

Travelling and socializing are hard for me. I’m an introvert, but I also have a collagen repair disorder called hypermobile Ehlers-Danlos syndrome (hEDS). It affects all tissues in the body but especially the joints, and it causes (for me) chronic pain, frequent injury, disabling fatigue, and brain fog. My first bout with COVID exacerbated these symptoms (and also made my short-term memory super glitchy). Thankfully, my pain is now well managed through a combination of medication and regular water aerobics, but the other symptoms seem to be here to stay.

In my infinite wisdom, I recently planned a three week, multistage vacation for my partner and I, with a few different groups of family and friends and their kids. First off, several full days at Disneyland and California Adventure with my sister and her kids and some other friends and family; then, two weeks in Mexico – one week on our own, and one week doing beachy stuff with a bunch of friends and their kids.

Great idea, because so fun! Also, terrible idea, because so delusional!

But Aunties, I survived. In fact, by my standards, I thrived. There was one day where I spent something like 12 full hours at Disneyland and my partner and I got the kids back to the condo on the shuttle and fed them and got them to bed without their parents and I got out of bed like a functioning human the next day. That was a huge win. Here’s another: when we got home I only needed one day in bed before I was ready to do life again. This recovery was many days faster than I’d hoped for.

Here’s what went right:

I’ve been communicating about my needs more openly, so my travel companions were super accommodating. I’ve had hEDS all along, but I was only diagnosed 18 months ago. I’m still learning to understand my access needs as legitimate, not just laziness or weakness. I’ve been judging myself for the things I can’t do my whole life, and the habits run deep. It took months for me to acknowledge that walking gets hard after a certain distance, that I often have significant pain and fatigue afterward, and that I have a lot more stamina in life when I’m able to lie down alone for several hours on most days.²

When I started using a cane about a year ago, I didn’t anticipate the conversations it would start with my friends and family. The more we’ve discussed my circumstances, limitations, and needs, the more I’ve been able to believe in these things myself. While I tend to doubt my body’s messages and want to overdo it, my friends and family have been heartwarmingly eager to show care.

I took advantage of mobility assistance. I hadn’t planned to use a mobility scooter at Disneyland because I didn’t want to spend the money.³ But the evening we arrived in Anaheim, my dad and my sister each separately went out of their way to suggest I try it. I did, and Aunties, the scooter was a game changer. The thing topped out at 2 miles per hour.⁴ The seat was kind of uncomfortable. But I was so much less tired! I didn’t get injured! If I parked and walked around for awhile (which I did often), I could go back and sit down whenever! I would never have been able to stay at Disneyland past early afternoon without it.

Apparently Disneyland's mobility scooters were once shiny and new. Not anymore.

My cane was helpful, too. Last year in Mexico I had a bad fall – my third in less than six months – and I ordered a cane as soon as we got home. This year, I was able to navigate the cobblestone streets, the sidewalks that slope steeply from left to right, and the 18” curbs — all of which are otherwise difficult and dangerous for me. I didn’t have to brace my body while walking around, and relaxing helped minimize fatigue.

At home on well-graded, familiar terrain, I don’t use my cane often, but now I got to have nice conversations with kids about my mobility limitations. I appreciated the opportunity to answer kids’ questions, and they appreciated the opportunity to Tiny Tim around whenever I was sitting down.⁵

When you're 4" tall, a cane fits under your armpit.

I scheduled solo rest days. I’ve finally learned to take pre-emptive rest days instead of waiting to crash. For years, I lived boom to bust. As a high school teacher, I often went weeks or months without taking a day off, and then I’d crash and have to get a last-minute substitute, often for several days. I’d lie in bed feeling guilty but barely able to get up to feed myself. When I left teaching for grad school, I learned to take weekends, but these were often densely scheduled and I still crashed at unpredictable, inconvenient times.

Thanks to my excellent therapist, about six months ago I started calendaring weekly full days alone in bed — a practice that has been transformative. I almost never have unpredictable crash days anymore. I also don’t feel so guilty about taking time to rest and introvert, because I increasingly trust that these days allow me to show up for the rest of my life. I took one solo rest day in California and a few more in Mexico, and they made a huge difference.

I opted out of high-intensity activities so I could show up for those that were a better fit. Disneyland was very high-intensity, but I only stayed for the full day once. Other days, I went back to our condo much earlier than everyone else.

On one occasion, my nieces and their dad returned to the condo with my partner and me, planning that we would all have some downtime in the afternoon, swim in the pool, and then go back to the park in the evening. There was a mix-up with the shuttle, we ended up having to walk a long way, and I realized I wasn’t going to be able to play in the pool with my nieces let alone go back to the park in the evening. I felt so bad about letting the kids down, but they quickly got over it. I was able to spend more time with them on subsequent days because I rested when I needed to.

The Limit-Embracing Auntie

I let myself follow my own rhythms. It has taken 45 years, and I’m still learning, but every time I take care of or advocate for my own needs, it gets easier.

I was fortunate to travel with lots of kind, easygoing adults who could care for the kids, answer their questions about why I wasn’t joining them for certain things, and distract them if they got grumpy about my absence. But even when I’m on my own with kids, I think I’ll be able to apply what I learned on this trip – that I can advocate openly for what I need, and that kids and adults alike can usually accommodate me. A year or two ago, I would’ve been like “duh” to these insights – but I’m increasingly learning to live into them in an embodied way, and that makes all the difference.

I have a lot of privilege, which makes navigating life with chronic illness and disability so much easier. I’m a highly-educated white woman with access to multiple financial safety nets. I have adequate health insurance. I have kind, competent healthcare providers who always believe me. I could afford to pay for the mobility scooter at Disneyland (actually, my family paid for it as a gift), and we could afford to stay in spacious, conveniently located lodgings where nobody had to sleep on a couch or the floor. I can afford to go on vacation, and I can afford to take days off all year round.

Many people with disabilities and chronic illnesses don’t have access to the resources and protections that I do, including Auntie Bulletin readers. Here in the U.S., the current administration is trying to slash funding for Medicaid and destroy Social Security, food assistance, and other safety nets funded by the federal government. People with disabilities, including kids, will be harmed in large numbers.

If you live in the U.S., please call your elected representatives and demand that they oppose the Trump administration’s efforts to cut social safety nets for kids, adults, and people disabilities. To that end, here are the two resources I’ve been finding useful:

• 5Calls lets you enter your zip code and select an issue you care about, then displays your legislators’ phone numbers and a recommended script for sharing your views. Introverts like me often call outside of business hours and leave a voicemail. Here’s a script focused on resisting attacks on Medicaid that fund billionaire tax cuts.

• Jessica Craven’s free newsletter, Chop Wood, Carry Water, offers 5-7 minutes’ of daily actions to take and calls to make, including handy call scripts. Here’s a recent post with guidance about resisting cuts to Medicaid.

Three Recommended Reads

One. How to Make People Feel Included.

Krista Burton’s O Caftan My Caftan is a hilarious, heartful, underrecognized gem with the best newsletter title on Substack. Recently, she wrote about how to make people feel included.

You could leave your group momentarily to introduce yourself to a new person you’ve spotted, or you could try the technique my friend Jorie swears by in this situation. (You don’t have to be friends with the person for this to work, but you do have to know their name and at least one fact about them.) I asked her to explain it to me:

“I think a great way to welcome someone into your circle is to shoot them a quick compliment. Like, you go, ‘Shelby, come here!’ and then say to the group: ‘Shelby just adopted the most adorable dog.’ When Shelby comes into the circle, lured by your command, you say to both Shelby and the group, ‘Shelby, how’s your new puppy doing?’ And, BOOM, you have a new person making conversation in the group.”

Two. Building Emotional Courage.

The Substack app recently served me this post from Kathleen Smith’s newsletter, The Anxious Overachiever, and it’s clear that the algorithm has my number. I foresee “emotional courage” becoming one of my new favorite concept labels. I bet I won’t shut up about it. I bet you’ll be like, “Lisa, enough with the emotional courage!” And I’ll be like, “You’re avoiding hard things! Call your cousin!”

There is no one way to develop emotional courage. Don’t give your money to anyone who says there is. But a way, an overlooked one, is found in Bowen theory—developing person-to-person relationships with your family of origin (i.e. parents, siblings, and extended family).

Bowen’s observation was that most people couldn’t really connect with family members and talk person-to-person. They would either keep things superficial, talk about other people, or not talk at all.

He noted that young therapists who had been working on family relationships made as much, if not more, progress on their marriage than those who were in therapy with their spouse.

Three. How to Start a Neighborhood Group Chat.

At Escape the Algorithm, Elan Ullendorff created a terrific, accessible guide to starting a neighborhood group chat. I followed his directions and now my street has a WhatsApp group with dozens of members. We’ve used it to share information about local ballot initiatives and public education advocacy days at the state capitol, and we’re currently collaborating to get the the city to introduce traffic calming measures on our street and clean up the tires and debris in our local ravine. When the Cascadia earthquake comes to devastate the Pacific Northwest, I’m going to be so glad we have this group.

Coming Attractions

Upcoming how-tos:

• How to hold a newborn baby (simple yet profound! postponed yet not forgotten!)

• How to befriend your elders (we’re branching out! kinship is intergenerational!)

• How to intervene when kids fight

I’m reshuffling the Auntie Bulletin content calendar a bit, but I think this Friday’s post will be about Mary Poppins.⁶ It’s a wonderful movie for kids and its soundtrack is practically perfect in every way, but it also has an important message for Aunties.

And Now, the Cute Kid Video of the Week

Check out these 2 year olds’ take on the best thing about Costco (video link). It’s as if they’ve run into Taylor Swift.

Nothing Sold, Bought, or Processed

Thank you so much for supporting The Auntie Bulletin! This is an ad-free, anti-capitalist publication that will never try to sell you anything and receives no money from affiliate links. Your support is what makes it possible for me to do this work.

Don’t forget: from now to March 15, you can get my 30% off annual subscription birthday promo and the buy-one-get-one promo. For a mere $35 US, that’ll be a year of The Auntie Bulletin and a year of Anya Kamenetz’s wonderful kids-and-climate-justice newsletter, The Golden Hour.

1. To redeem a promo, you need to be logged into Substack on the web. You can’t upgrade in-app for some reason 🙄. Also, I’m not sure Substack will let readers redeem two promos at once. Let me know if it doesn’t work and I will wave my magic wand on your behalf.

2. You know what I just realized? Until writing this post today, I hadn’t consciously admitted to myself that I need to spend a lot of time lying down in order to have enough stamina to live my life. It’s a big deal for me to name this explicitly – right now, right here in this footnote. Thanks for coming along with me, Aunties. Truly. ❤️

3. For the record, “electric convenience vehicles” at Disneyland cost $60/day plus a $20 refundable deposit.

4. I thought my jokes about crashing the scooter and causing a fiery explosion were funny a lot longer than everyone else thought they were funny.

5. Here’s a lesson learned: When loaning one’s cane to a child, preface with: “You can only play with it if you give it back the instant I ask for it. If you don’t give it back right away, I won’t let you borrow it anymore.”

6. No shade to Emily Blunt, who I really like, but there is only one Mary Poppins movie and it stars Julie Andrews.