Flare In The Light

I want to talk about the unexpected ways my worsening disabilities have forced me to alter my lifestyle, particularly in how I dress.

My whole life, I've been very fashion-forward. It's not for vanity; I've just always been drawn to pretty, bold, colorful things, and growing up with the social challenges that come from autism, fashion became my outlet to express myself when I couldn't in words. But I've recently had to make significant changes to my wardrobe and dressing habits. I used to prioritize aesthetics over comfort, but that is a luxury I can no longer afford.

With my poor balance, frequent injuries from falls, chronic pain and fatigue, I'm trying to now mitigate all risks as much as I can. I literally can't even wear a majority of the shoes in my closet anymore (despite having at least 60+ pairs), because they are either too high heeled, unstable, or difficult to walk in. It's been a challenge finding new shoes that are sensible and comfortable, but still feel like “me” and match my style.

Last weekend I purchased 11 beautiful dresses from the thrift store, all for very cheap. I own a lot already, but going forward I want to (almost) exclusively wear only dresses. I've struggled with my weight for many years, between medication side effects, compulsive overeating from bipolar disorder, lack of variety in my diet due to sensory issues, and difficulty exercising.

I am currently at my heaviest weight ever and do not feel good in my body. My size has fluctuated so much that I feel defeated each time I have to buy new clothes in a bigger size when the ones I have no longer fit me. Flowy dresses and skirts are much more forgiving with sizing than pants are, more comfortable, and less restrictive for pain. And now with my very limited physical abilities and cognitive functioning, I need to conserve all my energy for the things that matter most – Dresses cut out the effort and thought it takes to piece together outfits each day, while still allowing me to look put together and feel cute.

This may all seem trivial to some, but it's a huge part of my identity that I've had to let go of and change in ways I'm not used to, and do not want.

One year today since I met Nat & Alex Wolff and one week since I got Nat's handwriting tattooed by my sister Chewy | Tattoo Artist ☀️

In a New York minute 🌃

And just like that, summer vacation has come to an end. Yesterday was my first day back to my regular work schedule, and the start of my 8th school year working with my main family!

Here's my grown up take on the “first day of school” photo and some reflections on the past decade of my life…

Another day, another medical test, another cry. 😭 Lots of big, complicated emotions... I made these gold stars for myself for today, because grown ups deserve gold stars too. ⭐️

*CW: mention of needles*
I had to get 12 VIALS of blood drawn today, the most I've ever had at once. I've always had a severe phobia of needles, which is intertwined with my OCD. It used to be so bad I couldn't even speak or type the word, instead I would call them "noodles" 🍜 and blood work was "BW." I also have a specific compulsion ritual that I frequently do that initially was related to the phobia, but over time morphed into a compulsion that I would just do as a soothing thing, even when I wasn't thinking about BW. The longest I went without getting BW was 11 years. But I've had to have SO many blood tests in the past 2 years that I've almost effectively overcome my phobia, which is something I NEVER thought would happen. I found the trick for me is that I can do it just fine so long as I get it pricked in my hand instead of my arm. Something about the arm is just so triggering for me.The medical assistant warned that because I had to get so much drawn at once, my hand vein might collapse, but I insisted and thankfully it was fine!

But I broke down crying halfway through and continued for a long time after... It was not even from physical pain of the blood test, it was emotional pain: the full time job it is to be chronically ill, the countless tests I've had done this summer, with no answers still. I get these crying spells multiple times a week now, often no specific or seemingly odd triggers, just how overwhelming it is to watch yourself rapidly decline before your own eyes.

One unusual silver lining to this all is that I have surprisingly seen Spirit a LOT lately and have been feeling very close to Spirit, which is sometimes an overwhelming feeling in itself, but in a good way. "Spirit" to me is what some might call 'God,' but as a Quaker, my idea of God/a higher power is very different from most other people's or the traditional Christian God. But it's been very enlightening and I haven't felt this close with Spirit in a very long time... Maybe that's a good sign. 💫🩶

Going on day 3 of my ambulatory EEG; One of the many tests I have undergone during the month of August. Hopefully this will add another piece to potentially solving the puzzle of all of the issues I've been experiencing the past 2+ months, which have included extreme fatigue, difficulty with mobility, cognitive impairment, migraines, severe light sensitivity, speech difficulties, and more.

I went to work like this today, looking like a robot 🤖 (I'm a caregiver/direct support professional for a girl with nonverbal autism and her brother)
Thankfully it was just a chill day; C. actually took a short nap, which she rarely does with me. Today their mom had a dentist appointment and then a mani/pedi after, but I generally have pretty much the whole summer off each year because their mom is home from her job as a teacher and the kids have camp and day program. A week from today the new school starts and I go back to working my usual Monday–Friday schedule in the afternoons/evenings. I've been trying to get all of this extensive testing done before resuming my regular workload. The neurologist has thankfully cleared me to go back to work as of late.
This will be heading into my 8th school year working with the family, so I'm literally an extension of the family myself at this point. 😄

I'm very fortunate to work in a position where I'm able to have such a close relationship with the people I work for. Even though I'm formally employed through an agency, the kids' mom (who is a single mom) is technically my direct "supervisor." She is aware of many of the personal facets of my life, and shares so many intimate details of her own and her kids' lives with me... That kind of just happens naturally when you're in someone's home five days a week providing care to their child who needs such substantial support. And that's honestly why I love my job so much and why it works so well for me. As someone on the autism spectrum myself, I thrive on both routine and instant gratification, so being a part of the direct daily care of another individual who depends on me is an optimal work environment that I find incredibly motivating and fulfilling. 🤗🩷💚💛

Yesterday I went to a meetup for adult American Girl doll collectors in NYC, from a groupchat I found through tiktok. We had a potluck picnic in Bryant Park (I brought homemade bread that was a hit!) then walked to the American Girl store afterwards. There were 10 of us and every single person there was so beautiful and kind, just warm, positive energy all around. 🥰 Honestly it meant so much to me because growing up I never hung out with a large group of girls, outside of maybe Girl Scouts or dance class, and even then I usually felt awkward. I never felt like I fit in in school or could relate to my peers (a lot of that was because of my autism which was undiagnosed at the time). And even though this was only the first meetup, I got to feel like part of a large group where I was included and seen and accepted. 🥹 No matter my age, I will always just be a girl at heart who loves stuffed animals and dolls and the color pink. Girlhood is so special. 🩷 I already can't wait for the next meetup! Oh and I did buy myself a new doll... my 5th one 🤭 I haven't picked out a name for her yet but she's so pretty!