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I was living in Zurich, Switzerland at the time, desperately wanting to enjoy this Glamorous Ex-Pat Lifestyle, but mostly just speaking Hochdeutsch but never being able to understand the Schwiizerdütsch that came back to me, and everyone thinking I was Dutch, not American. Eventually I gave up and just spoke English all the time. I spent a lot of time being yelled at in Schwiizerdütsch (it isn’t only Americans who just yell louder in their own language when someone doesn’t understand them!).

I spent a while searching for an Alexander Technique practitioner who seemed nice and spoke English, and took about a year of lessons during the second half of my doctoral program. I have three main memories of those sessions:

• laying fully clothed on a massage table and the practitioner kind of running her hands down the outside of my arms and legs
• sitting in a chair or standing in front of the chair, with her repeatedly saying “There is enough UP!”
• admitting to myself that I was paying $150/hour for someone to be nice to me and actually provide physical contact with another human

The end result of all that was me impulsively deciding that the solution to my problems was just to find a career where I didn’t need to sit. Enter: a disastrous attempt at being a high school science teacher which is, also, a story for another day.

For years that phrase has echoed in my head as I observe myself slouching through life. There is enough up! There is enough up!

In 2021, at the age of 48, I was officially diagnosed with hypermobile Ehlers Danlos Syndrome 18 months after marching into my primary care doc’s office with the Dr. Alan Pocinki Article on HSD and hEDS.

A year later and I’ve finally found a PCP who knows more about EDS than me, and a physical therapist who specializes in EDS who immediately sends me out to get custom AFOs. I pick them up a few weeks later and pretend I’ll carefully follow the titration schedule during the adjustment period. I eventually find some shoes they will fit into (women’s size 13 wide! Yay me!), put then on, cook and do dishes (i.e. stand for an hour) and my entire pelvic floor seizes up!

Ohhhhh, these are actually doing something!

I realize that with them on I feel like I can actually kind of almost stand up straight? Like, if I straighten my torso (shoulders back!) that there is actually some “up” coming from my pelvic area! What the hell is that feeling!?

And then it dawns on me—is that the body my AT practitioner thought I had? One that had enough “up” in it if I could just break my slouching habit? HA HA HA HA HA!

In some ways that moment with my new AFOs released me from a lifetime of self judgement. My body literally does not have enough “up”!!! And my bad posture isn’t just a bad habit or some psychosomatic projection of poor self esteem (listen, sometimes bodily ailments are our psyches projecting stuff out into our bodies…but sometimes it’s actually our bodies and trying to read a secret meaning into every damn thing is tiresome at best and legitimately harmful).

My body doesn’t have enough up!!!

My ligaments and tendons do not provide the normal amount of “up”. I cannot just balance on my neutral upright spine. I must cramp up various muscles to imitate whatever posture I’m aiming for. This leads to all kinds of shit like migraines, and it also, bizarrely means I have weak and spasmy muscles.

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In a nutshell, in order to avoid physical injury and/or nervous system dysregulation (I tend to go into freeze states or rage states) I need:

• freedom to move or have sensory input to keep me in a window of tolerance
• furniture that enables non-injuring postures
• access to attend to bodily needs (food, drink, toilet, etc)
• autonomy to respond to my bodymind’s radical consent cues

Autistic and ADHDer folks need to stim at much higher rates than neurotypical folk. It’s simply how our nervous system works. We can be sensory seeking or sensory avoidant, but we need to be able to address our sensory input needs to keep our “system” functioning well. Many of us find moving meditation much more accessible than traditional sitting meditation which, in many traditions, expects practitioners to hold completely still for the 20-60 min sitting period.

Us hypermobile EDS/HSD folks, on the other hand, do not have enough “up” to hold our unsupported bodies upright. Many of our bodies literally do not have a “neutral, relaxed, upright posture” on a meditation cushion or even a bench or chair. And many of us have dysautonomia which impacts our ability to function upright (literally not enough blood in the head) and impacts our electrolyte regulation and digestion, so salt, water, and bathrooms are critical access needs for us. The entire autonomic system can be affected.

Pretending to be normal

–said by all masked Autistics, everywhere

Both of these combined means my body holds a ton of trauma around autonomy. I have 5 decades of past experience of forcing my body to do things it was not consenting to: holding still when I needed to move, moving when I needed to rest, holding my pee because I go to the bathroom “too often”, trying to carry on like normal while having whole-body sweats and poop cramps, pretzeling up in uncomfortable furniture and being injured for weeks afterward … just an AuADHDer pretending to be normal. I will never forget the Somatic Experiencing session where I had proclaimed that I had a really hard time knowing what I felt … and then later in that session I was describing my experience of sitting meditation, holding perfectly still despite being in very intense pain, and all the while there was a voice inside of me screaming “NO!!!” at the top of its lungs. My therapist just looked at me, and I said, “Oh, you mean that’s the voice I’m supposed to be listening to? Yeah, that one’s there all the time.” And that was when I conceived of the idea of radical consent applying to everything, not just sex. Did I consent to this activity? Did I consent to sharing an inner or emotional experience with someone, especially someone I don’t trust?

My dream

My dream “meditation” center, first of all, would not be called a meditation center. I think it would instead be a place to cultivate embodied awareness of the present moment, a place to cultivate boundless friendliness with one’s body/mind.

It would be an accessible building with numerous rooms in it. Each room would offer a different practice “gate” for cultivating embodied awareness; there would a bunch of different rooms that might look like:

• a room filled with traditional meditation cushions, benches, chairs, and things like recliners and whole-body beanbags and other pressure-point-free support furniture. This room might have a traditional buddhist altar and look the most like an American zen buddhist temple. There might be a few of these with different kinds of lighting in each (candles, regular-but-not-horrible lighting, etc)
• one with very low lighting and a variety of comfortable seating/reclining options, but also filled with plants and water features and other things to bring a sense of nature indoors. There might be a few of these–one more pine/tree focused, one more floral, etc
• a large empty room with a bunch of super comfortable noise cancelling headphones; each person could choose their own music and dance in whatever way moves them
• a room for coordinated movement–this could be some good dance beats, tai chi, yoga, etc
• a room with exercise balls and other kinds of “fidget sitting” furniture, meant for traditional sitting meditation but with more localized, smaller, or slower movements encouraged and welcomed
• a room for large muscle engagement, with mini trampolines, gymnastic pads on the floor, etc
• a place set up for “slow crafting” (small muscle engagement!), with supplies for spinning yarn, knitting, crochet, stitching/embroidery and other needlework, intuitive painting, clay, brush painting/calligraphy, etc
• a mindful kitchen, with a practice opportunity of slow mindful food preparation under the guidance of the head cook: washing rice, chopping vegetables, etc
• A room with mats and pillows and blankets, where guided meditation is offered, or soft lullabies for complete rest
• outdoor practice spaces: walking paths, gazebo, plants to enjoy, gardening space to work in, hammocks for watching clouds, etc
• The building would ideally have enough land to allow for some outdoor walking paths that offer full immersion in a non-built environment (i.e., away from sight of buildings and sounds of cars), but this may not be feasible, or I’m imagining a pair of centers–one in the city and its cousin in the country.

Gentle bells would be rung at regular intervals as a way of communicating time “periods” and inviting people to change their practice, but no one is required to follow them; they are just there as (truly open) invitation and information. People are free to change activities as their internal self indicates and don’t need to “wait for the bell”–this is a place of radical consent and full autonomy. This would be a trauma-informed space, where (again) autonomy and consent are critical to creating a safe space.

Full meals are available at scheduled times and people are free to join the meal, but no one is required to and nourishing snacks and other food is available at all times so that participants can best care for their bodies as they need to.

There are guides throughout the space—people wearing visible markers or buttons indicating they are familiar with the space and can serve as a guide. We would work with people with vision impairments on how they could access guide-people and other information.

The central principle tying all these together is maximal self regulation within a sensory supportive environment that allows one to focus on inner cues and experience–to cultivate embodied awareness of the present moment while attending to bodily needs. This is in contrast to what my friend calls “toddler retreats” where everything is 100% prescribed for participants who are left with no autonomy and no space to actually listen to their cues and take care of themselves. For some people, those toddler retreats activate masking karma/habits and deeply discourage self-regulation. In contrast, I want to build a center where people are encouraged to cultivate a loving and trusting relationship with their body rather than an adversarial or dominating/controlling relationship.

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I’ve been to about a dozen conferences in 3 different scientific fields over my somewhat unusual career. I actually love giving talks, so that’s never been the problem. It’s literally everything else about the conference that I don’t like!

I’d always assumed the point of a conference was to share your latest research, and catch up on what everyone else in the field was up to … since this is literally the structure of these events. We submit abstracts with our results, and then we show up and get a giant schedule of when everyone else is showing their results. Being a literal type, I assumed I was supposed to attend as many of those sessions as possible, especially since it’s typically expensive to attend a conference (airfare + hotel + big registration fees). If I wasn’t supposed to be attending them, then why was there a schedule full of this stuff?

It’s only in recent years that someone explained to me the “purpose” of conferences is really more about networking, meeting new scientists and potential collaborators, and catching up with colleagues, friends, and acquaintances.

A word about me

My hEDS means I get injured easily, and many normal activities are intensely fatiguing. So the standing around and the sitting in conference chairs is very costly to my body.

My autistic operating system is information/task/object oriented, not people oriented. Interacting with people is an expensive cognitive load and will detract from my ability to focus and learn. It’s also just exhausting to me (both in the way it is for all introverts but also in a specifically autistic way). My OS also needs structure and routine, so traveling and generally not having my normal routine is also stressful and adds to my cognitive load (and also aggravates my body and health conditions).

My ADHD operating system makes it harder for me to maintain attention, particularly when listening. My auditory processing disorder (really, and aspect of an autistic brain with sensory processing differences) definitely contributes to this.

What, exactly, doesn’t work?

I’m here to learn about the latest research …. but

I’m listening to a talk session …

• but my brain gets “full” after about an hour, and no amount of internal “efforting” can keep my attention focused on the talks/posters. It’s like drinking from a fire hose
• and my auditory processing disorder makes it hard for me to comprehend speech, especially if there are people whispering nearby, fan or HVAC noises, or spillover noise from another room
• and my inattentive ADHD means I zone out so, so quickly that the only way I really can learn is through reading for a few reasons
  • I read much faster than most people speak, so my attention span is effectively longer for reading than listening
  • I can pace myself as I need to
  • I can go back and re-read something if I notice my mind wandered
  • I don’t have to rely on my poor working memory to piece things together–I can see them on the page
• and sitting on benches or arm-less chairs starts to hurt my body after about 20 minutes. By 60 minutes I’m moving into injury and/or migraine-from-muscle-tension regime (standing is even worse).

I’m browsing a poster session …

• but standing (or slow walking) injures me even more quickly than sitting! My POTS symptoms go nuts (lightheadedness, tachycardia, intense fatigue), my upper back+neck go into muscle spasm, and–TMI–I can feel gravity pulling down on my prolapse (thanks, defective connective tissue!)
• and the sensory experience of a poster hall is a nightmare–the loud, echoy noises, weird lighting, too hot or too cold make my head start to swim!
• and it’s a social interaction/interpersonal nightmare! I’m trying to read your poster, and you start talking to me and now my executive function slows to a crawl while I try to navigate BOTH this social interaction according to my lookup table while also processing the technical information on your poster. I both flub the interaction AND don’t absorb anything from the poster!

I’m trying to hang around the conference venue all day …

• but there’s nowhere I can actually rest (this would require a full couch/chaise longue, bed, or recliner)
• I can’t escape the sensory hell of the conference center (I would need a quiet room with sorta dim and non fluorescent lighting, and some soothing sounds like a waterfall)
• my dysautonomia means I can’t regulate my temperature, so I have a heavy backpack with layers of clothing I’m constantly putting on and off, and a water bottle, and a snack, and some knitting (to desperately eek out a tiny bit more attention focus during talk sessions)

I’m supposed to be greeting people I’ve met before …

• but my mild face blindness means I don’t recognize anyone unless I see them frequently! I am also terrible with names, so looking at someone’s badge often doesn’t clear up the mystery! So if I give you an awkward smile and some bobble-head nods … that’s me trying to fake being neurotypical!

I’m supposed to be networking and meeting new people …

• but I don’t do this! I always joke that “my momma told me never to talk to strangers (and never, ever get in the car with a stranger!)” and that’s kind of how I function. I don’t make small talk, and I really don’t get to know people unless I’m in a structured activity with them (in a class, or working together in some capacity).
• I’m also not a PI or in a position to write grants or spearhead projects, so I’m not really needing to find new collaborators.

I’ve traveled across the country or globe …

• and now I have jet lag, my fragile sleep hygiene is disrupted, and my whole self-care regimen falls apart

I’m gone for a week …

• and when I get back I’m now a week farther behind in my work!

The fallout

• The conference is hard on my body because of the chairs and standing–my feet, knees, hips will flare up, my back and neck muscles will be in spasm which sets off rounds of migraines, my POTS will flare up (in particular the intense fatigue). It may be several weeks until I can pull out of the tailspin from each of these (and the interacting and cascading effects from them).
• My sleep cycle will be disrupted for weeks (it takes me a week even to adjust to daylight savings time)
• My sense of routine and work-life balance will be off kilter for several days. This is aggravated by the fatigue and pain/injury flare, which makes it even harder to get back on track (getting groceries, cooking food, etc)

What is hEDS?

hEDS stands for hypermobile Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome is a collection of 13 genetic connective tissue disorders; hypermobile type (the kind I have) is the most common type of EDS.

• it’s genetic, so I’ve had it since birth
• it’s a disorder of connective tissue: my body doesn’t make collagen and connective tissue correctly. Connective tissue is everywhere–in our skin, our ligaments, our blood vessels, our organ walls, our entire digestive tract. Connective tissue is what keeps your abdominal organs where they’re supposed to be!
• the most obvious manifestation is joint laxity–all my ligaments and tendons are too loose, leading to joint hypermobility, frequent joint subluxations (frequent as in … multiple times per day), and occasional joint dislocations. Think of my tendons and ligaments as wet noodles rather than rubber bands
• the joint laxity means two things
  • I’m using muscles to literally hold my body up since my ligaments aren’t contributing much “up-ness”
  • I can get injured doing anything … like raising my arm or standing up or rolling over in bed
• widespread dysautonomia, including POTS, trouble regulating body temperature, trouble regulating electrolytes and blood volume, trouble with pupilary reflexes, digestive trouble, insomnia, etc
• it’s exhausting. It’s physically exhausting (using weak and overused muscles to do the job of ligaments) and it’s “chronic pain” exhausting. Many people who have hEDS are misdiagnosed as having chronic fatigue syndrome, which gives an idea of the kind of fatigue and exhaustion I’m talking about
• I’m in pain all the time

It sucks, and I wish I didn’t have it … and getting diagnosed at 48 was life changing. I had no idea other people weren’t experiencing what I was experiencing and I just thought I was a whiny hypochondriac. Now that I understand what’s going on, I can take some measures to improve a few things and, more importantly, I can stop making it worse by doing things that harm me, or pushing through when I need a break. And I can be kinder to myself rather than judging myself.

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Finding a local support group has made such a huge impact on my life! It’s hard to overstate how helpful that’s been, both in feeling validated about my experiences with my body and with healthcare, and in terms of finding local sources of help. It’s great to know which doctors are EDS-aware, and which PTs and OTs are better able to help. Actually, it’s beyond great; it’s absolutely critical to getting good care, especially for anything surgical.

EDS is a real bear of a condition, and knowing I’m not alone has been a tremendous support. I’m hoping in the future to be more involved in some national and international support through the Ehlers Danlos Society. 

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 31 of #MyEDSChallenge … community appeared first on Neurodivergent Zebra.

EDS ECHO is a professional development (continuing education) for medical professionals to educate them about the forms of EDS/HSD and how to manage them for their patients. It’s designed to reach beyond just individual professionals, instead turning them into “hubs” who can also educate colleagues. It’s run by the Ehlers-Danlos Society and is free of charge to participate. This is one reason I’m raising money for The Ehlers-Danlos Society: since an actual cure for EDS/HSD seems unlikely, the next best hope is for there to be better awareness of the conditions and how to treat them. 

Link to more information about EDS ECHO https://www.ehlers-danlos.com/echo/

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 30 of #MyEDSChallenge … what is EDS ECHO? appeared first on Neurodivergent Zebra.

I don’t know if a cure for EDS is possible. My hope is that we will find better ways to treat some of the systemic effects. One odd ray of hope coming out of COVID is that a huge number of people are having “long-COVID”, much of which is autonomic dysfunction of the kind that is widely prevalent in people with EDS (https://time.com/6051767/long-covid-19-rare-disease-pots/). Sadly, this kind of dysautonomia was either unknown, unrecognized, or (frankly) totally dismissed by a lot of doctors. One “silver lining” of COVID is that many of the people who were getting sick early were medical professionals and so doctors and other professionals are also over-represented in the long-COVID population, which means dysautonomia is finally being taken more seriously. This is due both to how widespread it is, but also because there’s a “believable” population reporting it. My geneticist and I actually spent several minutes of my diagnostic visit discussing this, and he was the one to bring up the “believable population” part. So, while I wish we weren’t having a pandemic of COVID and an epidemic of long-COVID, it is making me hopeful that more research will be done and better treatments and possibly even a cure. Treating those systemic aspects/co-morbidities of would make a huge difference in my daily quality of life.

I also hope the gene for hEDS is found, and I hope there can be some clarity for people diagnosed with “hypermobility spectrum disorder”, which is kind of the catch-all for people who don’t meet the strict hEDS criteria. It’s a very frustration place to be, because the pain, dislocations, systemic effects, and impact on quality of life can be indistinguishable from hEDS, but it’s often not taken as seriously. I feel like it’s the diagnosis for those who don’t meet hEDS criteria … and for those who aren’t able to see a geneticist to get diagnosed (i.e., no one knows enough to diagnose them). I was diagnosed with HSD 2 years ago because no one in my care system was qualified/informed enough to  say otherwise, and I had to push to get a referral to a geneticist. And I’m very privileged; I live in an urban area, I have outrageously good health insurance, and I was able to advocate for myself. I also have access to peer reviewed scientific literature through my employer, and I can read and understand much of it, which also put me in a better position to speak up for myself. So, my hope is that HSD is also given the respect it needs, or that we can understand HSD and hEDS are the same or overlapping conditions.

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 29 of #MyEDSChallenge … research hopes for our future appeared first on Neurodivergent Zebra.

I’ve been struggling all day to think of what I wanted to say about acts of kindness without just falling into a cliche. And sometimes things like niceness and kindness can be wonderful gifts to people and other times they can be harmful. The harm can be unintentional, either by “helping” where it isn’t needed or asked for, as Rebekah Taussig so deftly explains (“But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic.” https://time.com/5881597/disability-kindness/ ). Or they can be harmful in the way of “enforcing silence” around “uncomfortable topics”. That’s particularly a problem in Minnesota, where I live, where there’s a lot of cultural pressure in the white world to not bring up anything that might evoke feelings or awkward conversations, which means pretending racism or other power differentials and systematic issues don’t exist.

It’s been a heavy week here in Minneapolis on the anniversary of the murder of George Floyd. Thinking about all the injustice in the world, and how much privilege I have as a white woman, and also my own participation in racism and sexism and ableism, even when I wish I wasn’t part of those systems.

So, I’ll just post this graphic I saw last year, which helps me think a bit harder about when I’m avoiding something difficult because I’m afraid of making waves. For example, yesterday I wrote that one of my goals is “mobility in my 80s”, but that phrase has been gnawing at me all day because I think it reflects some of my internalized ableism: needing more mobility aids would make my life “worse” and I’d lose independence because of the way our society is set up. My instinctive reaction is to stay as able-bodied as possible rather than to work towards a world where disabled people aren’t excluded from huge swaths of life.

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 28 of #MyEDSChallenge … act of kindness appeared first on Neurodivergent Zebra.

Support and aids is an avenue I’m hoping to explore now that I have an official diagnosis. 

I tried seeing an OT last year but she wasn’t very familiar with hypermobility and just told me to go on Amazon and look for whatever I want. Yeah—I already know how to do that, thankyouverymuch. I’d been hoping she could bring some expertise to the situation and also actually size me for things. I bought a collection of those elastic support things for wrist and elbow, but both of them immediately make parts of my hand go numb

I have 3 or 4 different knee braces, but none of them actually keep my kneecap from subluxing at all. In high school and college I used to tape my kneecap a lot but I have a terrible reaction to adhesives so I had to stop doing that. Why, yes, that adhesive reaction IS another gift of hEDS! Funnily enough I’ve found that the thigh high compression stockings I wear for varicose veins and POTS/blood pooling actually help stabilize my kneecaps a bit!

I have one ring splint I got off Etsy for my thumb, which is definitely my worst. The ring splint does keep me from hyperextending, but it also hurts the skin where it presses in when I do something that would normally hyperextend that joint (like opening a bag of cereal or pushing a button ). And my skin swells and shrinks so much moment to moment that it’s hard to get a good fit. 

My head is actually something I struggle with a lot. I guess it’s technically my neck that’s the problem, but I always feel like my head is too heavy to hold up. This is both literal and metaphorical, because I’ve also struggled being an intelligent woman in a world that doesn’t always like intelligent women. I have neck pain and muscle tension/pain in my neck and shoulders, and I get a ton of headaches. I don’t notice it quite as much when I’m walking, but if I’m standing still or sitting down my head feels like it weighs a million pounds, and I’m nearly always propping my head up on my hand or slouching way down in a chair so I can rest my head on the back of the chair. Of course, the propping on my hand then aggravated my finger or wrist joints (and my ulnar nerve, so my pinky goes numb). Slouching way, way down is also not a great posture!

I recently got an SI joint belt (and remembered to wear it!!) and wow did that make a huge difference in my lower back pain. I felt like my entire trunk was being supported!!

I also got a shower stool so I don’t have to stand while bathing. That’s another game changer!! I used to march in place while I showered, but that’s always a bit dodgy when standing on a wet, soapy tiled floor. 

I’m hoping to get connected with an EDS knowledgeable OT who can help me figure out some better ways to support my joints and minimize injury and wear and tear. My real goal in life right now is focused on “mobility into my 80s”. I’d like to keep being able to walk and take care of basic activities of daily living for as long as possible. 

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 27 of #MyEDSChallenge … support/aids appeared first on Neurodivergent Zebra.

I’m slowly learning what self care looks like for me:

• rest
• taking breaks during everything (breaks to rest if I’m active, and breaks to move if I’m being contemplative)
• staycations so I can put “quality brain time” into personal projects
• having a variety of hobbies to suit my pain/activity level
• getting enough water and salt
• letting more things slide
• using my sick leave for PT and doctor’s appointments
• Indulging my senses with fancy lotion
• Listening to the rain and watching the clouds and birds
• relaxing rain cd at night

If I had a bathtub in my apartment this list would include baths!

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders

The post Day 26 of #MyEDSChallenge … self-care appeared first on Neurodivergent Zebra.