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Amie

@lightweight_show

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Examining the nature of addiction and denial through dark comedic plays.
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Ehlers Danlos Syndrome awareness month part 3: the decades long journey to a diagnosis. It’s pretty typical for a diagnosis to take decades. Lack of research, lack of awareness, and a major lack of specialists make it difficult. I hadn’t heard of the term hypermobility in a health context until a friend posted about it. I hadn’t heard of EDS until I was getting evaluated. In hindsight, the signs were always there: I remember seeing a pharmaceutical ad for arthritis when I was 11 years old and thinking “Pain, stiffness, achy joints… I have that!” Convincing anyone else that I had arthritis proved futile, but I remained sure of it. In middle school I needed orthotics for my shoes, in high school I needed PT for my knees. I was teased for being so freakishly bendy, earning the nickname of “Gumby” from my high school swim team. I stressed a wardrobe person out so much that they cried because my arms were too long for literally every blazer they tried on me. (my arms are the original selfie-sticks, which, as it turns out, was a genetic clue) Since 2007 I have been telling my doctors that something wasn’t right, that I always felt run down, achy, flu-like, and that my legs were in pain and so, so heavy. Because I had a (resolved) history of eating disorders, it was easy for them to tell me that this was my body responding to the damage that I did to it. And also, that it was anxiety. So basically, it was my fault and also possibly in my head. “Have you tried exercising?”. Then things got weird. A teeny tiny acupuncture needle collapsed my lung. I had a fracture in my hip that didn’t heal for 4 years. I got a mild case of COVID in 2022 that became long COVID. Things really started to go downhill from there. <screaming into the void> Something wasn’t right and no one would listen! (Continued in comments, which I could not pin…) by @lightweight_show
22
a year ago
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Ehlers Danlos Awareness part 2 ✨ Today: What is EDS Tomorrow: how I finally received a diagnosis, and a little note on medical gaslighting. But first… WOW! The response to my last post was 🤯 Thank you for the support and DMs that flooded my inbox. You validated me and my suspicion that EDS is indeed not rare, as I’ve been connected to dozens of people in my inner and outer circle who came forward and said they have it, too. The importance 👏🏼 of 👏🏼advocacy 👏🏼 So what is EDS? It’s hard to explain. Basically, my body makes faulty connective tissue. The glue that holds our body together. A typical body gets the gorilla glue version of connective tissue and I get the Ehlmer’s glue stick from the bottom of a 90s backpack. Collagen? We don’t know her. This means everything from organs not being protected well to discs, joints, ribs and even my pelvis slipping out of place on the daily. My body is too bendy, and it wears on my nerves and joints, causing chronic pain, tremors and fatigue. Most days my legs feel too heavy, and like my neck can’t support my head, and… you know that feeling when you’re coming down with the flu? Stiffness, aches, and run down? That’s my normal. Wherever I go and whatever I do, I pray that there’s something for me to lean on (which is why many folks with EDS use mobility aids). EDS also impacts the nervous system. And digestion. And fine motor skills. And of all the wild things, it also causes you to metabolize drugs and alcohol very quickly (I guess I’m an expensive date ☺️) While EDS slows me down, it hasn’t stopped me. Not yet. Cognitive behavioral therapy techniques, breath work, occupational therapy and PT have given me the tools to strengthen and cope. I work full time, perform, write, puppeteer, travel, and show up to my Italian classes. But it’s not the same as it once was, and that makes me sad and scared. I’ve been having recurring dreams lately where I am running. Perfectly. And I’m smiling and feel so free and light. I wake up and think “I’ll never have that”. But then I remember how much I HATE RUNNING and curl up under my heating pads with relief. Silver linings exist 🥲 #ehlersdanlossydrome by @lightweight_show
13
a year ago
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Ehlers Danlos Syndrome Awareness Month. At this time last year I was newly diagnosed with this rare genetic connective tissue disorder. A whole community of people were posting about it, raising awareness, telling everyone to get loud. Members of this specific medical community include people that I admire like @lenadunham and @jameelajamil and drag star @oddlyyvie and the amazingly talented @iamhalsey and @siamusic . Oh and @rebeccayarros! I love being loud, but I completely shut down, overwhelmed by this diagnosis. I can probably count on one hand how many of my friends and family have been made aware. But now it’s been a year of learning and coping, and it’s time to make some noise because I actually don’t think that Ehlers Danlos Syndrome is rare, I believe that it’s under diagnosed and misdiagnosed. For over a decade and a half I was told that my symptoms were “anxiety”, until ONE doctor finally listened and ran tests. Now my care team consists of a rheumatologist, immunologist, cardiologist, neurologist, gastroenterologist, occupational therapist and physical therapist (I think I’m missing a few). I’m doing tests and labs so often that I can’t believe I still have any blood left. It’s been rough, but these specialists and these tests give me the answers that I have needed for so long: what is going on with my body and why and what can I do to help myself? Because Ehlers Danlos Syndrome has no cure… you’re born with it and you die with it. And you are always, and I mean every hour of every day ALWAYS, in pain. I mean my body is like literally falling apart 🫠 So this month I’ll do my part. Now I feel ready-ish to talk about #ehlersdanlossydrome and I’ll be posting about my journey in hopes that it helps anyone. It’ll help me, at least. I don’t like keeping things to myself 😘 More info if you want: @ehlers.danlos 📸 @mandeephoto by @lightweight_show
50
a year ago
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I’ve co-founded a festival! 💖 An idea that was born over a cup of coffee with my dear friend and frequent collaborator @hellojenrowe has come to life and I am so proud and excited. If you are a solo show creator, chances are you most likely have a filmed version of your stage show. You use it to make promo reels and pitch packets, or if you’re like me and @lightweight_show it’s living on Vimeo just waiting for someone to find it. Why not give these filmed solo shows a chance to be celebrated and seen? Why not have a film festival… for theatre? WHY NOT?! We opened submissions in June and are so thrilled with the response so far. Shows from all over the world that we would have never known of or been able to see in person are now accessible to us. A selection of these shows will be screened in person on October 10th and I’ll post those details as it comes. In the meantime, I have some asks: 1. Follow @solotheatrefilmfestival and share with any solo theatre creator who would like the opportunity for their work to be showcased and voice amplified. 2. Submit your qualifying work! Details are in our IG bio @solotheatrefilmfestival . Deadline is August 10th If you’ve read this far, thank you! You’re a ⭐️ by @lightweight_show
14
3 months ago
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Hello Solo Show Artists! Do you have a solo performance filmed? Is it 40-60 min in runtime? Or do you know someone who does? Tag your fav solo show performer in the comments! We are looking for unforgettable solo performances for our inaugural Solo Theatre Film Festival taking place in Los Angeles on October 10, 2026! A selection of highlighted films will be screened at The Blue Door Theater in Downtown Culver City. This is a chance for your performance to have a life beyond its stage run and connect you with viewers from around the world. Win cash to put toward your next fringe entrance fee! A session with a veteran solo performer And have your show as part of a pitch deck submitted to producers for future programming ✨ See more about our awards, prizes and rules on @filmfreeway And give us a follow at @solotheatrefilmfestival to stay in the loop and learn more! All genres welcome, theatre, storytelling, movement, clown, performance art, etc. Submissions open through August 10th! Create a free profile on Film Freeway, find our festival at Solo Theatre Film Festival and submit today! This festival is intentionally about the performance and not about production value, so if you’re on the fence, just submit! Submissions accepted from anywhere! Thanks to those who have already submitted- it’s been a joy to watch your work! #solotheatre #solotheater #soloshow #onepersonshow #stagetoscreen by @lightweight_show
48
3 months ago
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2025 was… 63 doctor appointments. Countless blood draws. A hundred symptoms tracked. New diagnoses. A job lost that I cherished. Flare ups. Tears. Our city on fire. A new show that I didn’t finish writing. A world that overwhelmed me. Defeat. Fear. 2025 was… a magical wedding in Mexico, a first time foster cat, reunited besties, vacationing with childhood girlfriends in Italy, hosting moms, aunties, nieces and sisters in our house, a dozen book club gatherings, visiting family, playing in San Francisco, performing in London, lifting spirits up, holding it down, letting it go, pushing through, speaking up, reaching out, holding hands, giving hugs, choosing to laugh, choosing who to love, choosing to live, showing up. 2026 please be gentle, please be kind. 💖🙏🏻 by @lightweight_show
16
9 months ago
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Chappell Roan - Pasadena, 10/10 - and it was a 10/10 ✨ Had major anxiety about needing the ADA accessibility but we had a wonderful and really comfortable experience. It also moved me to literal tears as I watched myself and about 50 others in the VIP ADA modify our H-O-T-T-O-G-O dance, seated and with T-Rex arms, so that we wouldn’t hurt ourselves or others. 🥹 It felt good, almost illegal, to feel this much joy. To breathe the same air as @chappellroan and @trixiemattel in one night… I’ve been floating ever since. I love LA, I love the queer community, and I love love love artists. Video courtesy of @ithamarenriquez since I spent the entire night like 😭😮😛🙀 taken in Pasadena, California by @lightweight_show
13
a year ago
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Can you believe this whole show is made up on the spot?! Don’t miss your chance to watch the FULL show - livestream tickets are available until Sept 6th! Special thanks to our incredible cast and to everyone who came to support us! Mark your calendars for our next show: OCTOBER 25TH (it’s gonna be spooky themed!!!!) #ucb #improv #thepuppetshowshow by @lightweight_show
19
a year ago
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TONIGHT! Only a handful of seats left! (Unlimited tickets for Livestream! It will be available to watch/purchase until 9/6!) Come be silly with us! Kids are welcome to BYOP (BRING YOUR OWN PUPPET)! (But we’ve got some extras you can borrow!) #ucb #improv #comedy #puppetry by @lightweight_show
8
a year ago
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Lewis 🥰😻 DM or contact @straycatalliance by @lightweight_show
21
a year ago
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Why the zebra? Patients with EDS are often referred to as “zebras” due to a medical adage: “When you hear hoofbeats, think horses, not zebras.” This saying is used to remind medical students that common diagnoses should be considered first, rather than rare ones. However, EDS is a rare group of genetic disorders that can present with a wide range of symptoms, making it difficult for doctors to diagnose. The “zebra” analogy symbolizes the unexpected and often overlooked nature of EDS. It highlights the challenges faced by EDS patients in seeking accurate diagnosis and treatment, as they may be seen as “zebras” in a herd of horses (common diagnoses). The zebra has become a widely recognized symbol for EDS awareness and advocacy, representing the strength, resilience, and unique characteristics of individuals with this condition. I’m glad that I chose to advocate a little during this #ehlersdanlossyndrome awareness month! Thank you to everyone who messaged me, left loving and supportive comments, and went out of their way to educate themselves further. It means the world to me. To all of my fellow zebras, keep dazzling 🦓✨💞 . . 📸 @mandeephoto 💄 @leighartistry by @lightweight_show
10
a year ago
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I was hit with an additional diagnosis of Mast Cell Activation Syndrome last week. I suspected it, but I wanted to be wrong. A common comorbidity of Ehlers Danlos Syndrome, MCAS is another chronic condition in which mast cells release excessive amounts of histamine when they shouldn’t… giving the body surprise allergic reactions to all sorts of things, affecting gut, cardiovascular, neurological and respiratory function. So fun. There are supplements and medications that can help, in addition to following a low histamine diet which, unfortunately, is very restrictive. For me, living a life free of any disordered eating behavior has been so joyful and liberating. I became one of those bitches that I always loathed… the type who eat what they want, when they want, and don’t think about it. I have been enjoying food and the fact that I have zero restrictions. I worked my ass off to get here and I really feel resentful of the fact that I now have a massive list on my fridge labeled “do not eat”. The diagnosis did arrive while I was vacationing in Italy, enjoying every high histamine food imaginable. Grateful that I was in the perfect place for a last hurrah. So, even though I know I’ll be okay, I’m grieving. The intersection of eating disorder recovery and chronic illness + medically restrictive diets is complicated. Anyone else have MCAS? Hit me up. #ehlersdanlos #ehlersdanlossyndrome #awareness #mastcellactivationsyndrome by @lightweight_show
18
a year ago
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