Over the past year, an incredible bit of collaboration has been brewing. On the surface, it presents as the culmination of being able to release a new EDS ring splint. This is an exciting enough announcement, but allow me to take you behind the scenes of what went into the development of this splint. It’s going to be a long one, so if you just want to jump straight to Lumecluster to order one – I’ll only be a little disappointed. You can also jump to the section where I give my experience with the Celestial Eye EDS Splint. I do, however, hope that you’ll stay and be inspired.

It was a few years ago when I first reached out to Melissa Ng, the glorious artisan behind Lumecluster. I had followed them for a little while as their fantasy armor would float across my timeline. During my short foray into TikTok, I was excited to see them pop up with a video featuring their Descendants of the Dragon Armor Rings. I loved the design and the story they wrote… but… I had a ponderance. So on a whim, I replied to the post. I figured no harm in asking; worst case scenario was that it would be lost in the comments.

My question? “Hey, does your ring armor allow your fingers to bend backwards?” As if that was a totally normal and reasonable ask. Hahaha

Thrilled to see that they replied and thankful they weren’t too discombobulated by it. We connected and started discussing how Ehlers-Danlos causes significant impacts on my hands. Videos to demonstrate significant hypermobility in my hands. How their current designs would probably not suit my particular splint requirements. Consideration of making a design specifically for EDS needs. And then?

We both kind of fell away from social media.

It was the time of the sleeping phoenix.

At least that’s what I’ve come to see it as. I was struggling with new braces, new ring splints, new surgeries, new specialists to add to my doctor team, post covid struggles, worsening of mast cell symptoms, anaphylaxis from prednisone, learning I’ve had asthma that’s been ignored since childhood, interpersonal relationship problems… I fell away from posting on Anxiety Zebra. Much of my artwork had paused and I was facing the very real possibility that the EDS could take it away for good. Work felt overwhelming and like a burden for the first time since I started there 19 years ago. I was even falling away from some of my closest connections.

We call it burnout.

It’s become such a pop-psychology term. It’s lost a lot significance when it comes up. It has become a synonym for simply needing to take a quick vacation to be able to bounce back. This was akin to scraping a recently washed and polished bowl and hoping there’s still somehow an essence of cake frosting left to sustain yourself on. To top it off, the frosting originally in the bowl wasn’t even the good kind in the first place. It was artificial banana that wasn’t blended enough so it’s all gritty and unpleasant.

Taking time to reevaluate my approach on how I needed to move forward living with the hand I’ve been dealt, I conversely tried to appear the same as the me that was younger – before I knew I had EDS. I had always lived by pushing through everything at full speed until there was a catastrophic crash… and that wasn’t serving me anymore. However, at the time that was all I knew. I didn’t know how to move forward going slow and being mindful. It was a complete change of perception that had its tendrils in everything. Even with having loved ones that were incredibly supportive, it was a difficult time where progress followed the one step forward and two steps back vibe.

What helped?

Diving into my indigenous heritage. Learning to use rotary tools again at a pace that honored the limits my body was trying to set. Taking some time to be out in nature and appreciating the bees and wasps. Learning, despite my conscious objections to it, how to embrace patience. Or as my brother says; to lower my expectations. Not because I was worthy of less, but because I deserved to not push myself into pain and to stop seeing production as a reward for it.

In that time, I was too exhausted to heavily mask. In an unexpected twist (unexpected to me and only me by the way) it was through that, I ended up making deeper connections with some of the indigenous people I know. They helped me see things from a more decolonized perspective and it started to make that transition time click together.

And then… A Spark

I saw Lumecluster post for the first time in years about coming back. At that point, it was simply the normal excitement of seeing a favorite artist coming out with a new thing. Curiosity and support. So when their first post in several years came out? Of course I signed up for their newsletter! As I read it… it hit like a gut punch. Not because it was disappointing, but because it was like expecting to be shown a glimpse into the behind the scenes. Instead? It was raw and seemingly unfiltered. All the wounds from the battle of struggling to survive were put into words, and I was realizing that they looked all too familiar. It wasn’t a blow from an enemy. It landed as a hard reminder to not retreat alone and that we can limp back from the battlefield together.

At the end of that post, was a request. “What part of yourself have you been missing lately and how can you start bringing it back? Feel free to reply to the newsletter or drop a comment below” Despite the mountain of complicated feelings that I was struggling with in my own life, I wrote a reply. I don’t recall what I responded with and I’ve a personal habit of not going back to reread things I’ve written unless it’s a technical issue. What I do remember is a metaphorical stretching out of a hand from under the cocoon of blankets I’ve wrapped up in despite feeling like all the bandages and scars should stay hidden.

It wasn’t because I felt like I needed to be brave. I wasn’t even expecting them to remember me from what felt like such a brief interaction several years prior. It was simply to reach out and say that I see you. That you’ve reminded me that I’m not alone in feeling this way; neither are you.

An acceptance that it was time to rise up from the ashes if you will.

From a Spark to a Rustling of Flame

Lumecluster responded and we reconnected on the topic of potentially designing ring splints. It quickly blossomed into more than that. I wasn’t talking to the brand, I was talking to Melissa. I brought up concerns about my limitations and was met with understanding and flexibility. They shared concerns about the process and functionality I needed, and I met them with some humor and explanations with video. An impressive amount of voice messages, emails, and short messages to further sort out details and considerations as they came up during the design process. My partner got involved and created a version of my prescription splints out of coat hanger wire. They were sent off so Melissa could glean a better understanding.

We also shared our experiences. Conversations about life as part of marginalized communities. Tattoo session sharing. Critique and appreciation of different authors and what they meant to our perception of the culture we’re surrounded by. The pressure we feel as artists. The struggle we’ve felt as people born in a feminine presenting body. How cats are little house goblins. The complicated nature of rediscovering our identity.

We’re so very different, and yet we formed a friendship that has become something treasured. Two artists coming together to create something incredible. Two people willing to see each other for who they are and embrace it. It became so much more than just a cool ring splint project, it was empathy, compassion, and healing cast in metal.

The Trials of Prototypes

I don’t want to give the wrong impression. This wasn’t just a heart-felt experience, it was a hell of a lot of work as well. Trying a new ring splint, even when it is perfectly fitted, makes my skin crawl and my bones itch. I’ve discussed before how it takes me a few months to adapt to the more official ones I have. I had to not only put the prototypes through trials, but also sort what was a legitimate design issue and what was me needing to grit my teeth and wait for this new contraption to feel less alien.

I wasn’t alone in this journey though. My partner also tested out one of the prototypes in an effort to better evaluate their comfort as someone without extreme hypermobility in their hands. Though designed with intention as a splint, the ring is going out as the crowning piece within the Mending Collection and is available to everyone. He gave invaluable input to ensure it would serve as simply fashion.

My occupational therapist, Mickey Calhoun OTR/L at Island Hand and Upper Body Rehabilitation, looked at videos, asked questions, and gave them a heavy in-person inspection. He had worked with me through the harrowing experience of having both my ulnar nerves go under the knife as well as experience with other Ehlers-Danlos patients. I trusted his feedback from a medical standpoint to look at the bigger picture.

Multiple friends were willing to try them on and give a detailed assessment of how they felt. From my tattoo artist Nikki Canady to friends that also face the challenges of Ehlers-Danlos… so many people were willing to be a part of the development process to ensure Melissa had well rounded feedback.

I put the prototypes through just about every trial I could think of. I made pine needle baskets and carved shells with a rotary tool. I sorted beads and organized paperwork. I typed articles like this and went to work. I cleaned and took apart a vacuum to fix it. I put on my body braid wrap and brushed my hair.

To make matters ever so slightly more complicated? I came to accept that it was time to work with a somatic therapist with a focus on sex therapy. She has been helping me shed some of the generational and societal expectations that have bogged me down and caused some of the suffocation of my inner self. However, imagine trying to adapt and find comfort in a brand new style of splint that’s necessary to function while you’re going into therapy that specifically brings attention to the sensations of the body. At times, it was as much fun as exfoliating a sunburn with sandpaper. And yet? It was motivated by joy and love rather than obligation.

This was a collaboration that had the potential to touch so many people which made even the challenging aspects seem significant.

Turns out, it was the final push;. No longer a limping off the battlefield licking wounds. This collaboration was a trust fall off of the cliff knowing that I’ve been ready to take flight for a while now. Everything started to fall together into this beautiful chaos of creation and rebirth. It was feeling the rage, shame, grief, pain, and insecurity right along with the euphoria. It was being ready for the sleeping embers to turn back into wings of lava to take flight on dreams thought to be forgotten – even if the approach to those dreams has to be through an adapted path.

The Celestial Eye and the Phoenix

I am beyond ecstatic to show off what has come from trusting those wings of inspiration. Melissa has created the Mending Collection. Featured in all its glory, is the Celestial Eye EDS Ring Splint accompanied by the striking collection of stacking rings. There will be several patina options and we can say with confidence that they’ve been tried and tested to be both comfortable and functional!

From the side, it resembles a Phoenix feather and from the front, an open eye. It’s a reminder to always elevate our understanding and empathy by keeping our eyes, hearts, and minds open.

This collection is for people who have been fighters all their life.

~Melissa Ng of Lumecluster

These rings aren’t just for those like me. They’re not just for people struggling with hands that might as well be put together with dry rotted rubber bands. Not just for people who feel they’re put together so badly that their Creator got carpel tunnel when they were being made and forgot some parts. They’re for anyone who needs a reminder of what their light looks like. Anyone who needs a call back to that divine part of themselves that has felt smothered, bruised, and exhausted. For all of us that have a need to learn to fight through Mending and Healing rather than sheer force.

Let’s Talk Functionality Though…

As excited as I am, I did want to give a functionality run down during my experiments with them in relation to my level of hypermobility. For reference, my hands are profoundly impacted by EDS. There’s past entries for the first time I got ring splints as well as when I got the second set to give a bit more insight if you’re wanting a deeper dive. Most of my finger joints have very little stability and holding a pen is enough to dislocate the MCP joint of my thumb. For someone that likes to do things like work with power tools? Not the best combination.

Could this design hold up to a heavy duty daily use as a splint?

With heavy duty work, some of my prescribed splints end up kind of clam shell closing due to the pressure of the joint naturally experiencing significant hyperextention. What I’ve found in the Celestial Eye design is that the nature of the multiple bands prevents the outer most bands from closing past a certain point and therefor preventing a greater level of hyperextention during power tool gripping.

While this was a point of frustration because I’m used to the ones from Silver Ring Splint Company having a greater degree of give so I can have “bad finger” positions… this isn’t actually a good thing. Extra give allows hyperextention and risks damage. I’ve accepted that the Celestial Eye is better for my mobility range. I just need to whinge about it first.

I do need to occasionally adjust them back into position if I’m doing work where they’re under a lot of pressure as they try to keep my knuckles from bending backwards. And they do slip a bit if I’m doing anything that takes a lot of opening and closing of my hand… but less so than the more official style. It’s just the nature of having a ring in the bend of your finger.

With that aspect sorted, I also had some major concerns about the fact that they were adjustable. One of the reasons I have always recommended going with the official channels and sizing was that you’d have splints perfectly suited to your ring size. Because they’re solid, I’ve also found them to not be at risk from stretching. I’ve had friends with hands less severely impacted that had luck with some other designs by Etsy artists, but my degree of wonk made them mostly useless.

How did the new Celestial Eye compare? Did they hold up?

Better than my expectations and with a surprise benefit! The standard swan neck ring splints can be adjusted within a half size by opening or closing the ring like a clam shell. I was used to this feature and utilized it often.

But having 3 points of more refined adjustment!? I can now more acutely adjust for swelling in my joints through the day. I can both bend the top band out AND tighten it! I didn’t consider what a shift in comfort this would turn out to be.

I found myself making small adjustments on the regular and wishing that I had the same ability with my other splints. Though it was easy for me to refine the fit, this may start as a slightly intimidating challenge for those without jewelry experience. We did try this out with some friends, but most of those closest to me are, shockingly, also involved in the arts. It seemed quite intuitive to all of us, but in the sake of transparency I’d not claim it would be easy for everyone.

The last consideration is the size of these rings. If you somehow managed to overlook this aspect until this point… in order to make the design fit over a functional knuckle? They had to have some height to them. Did the size of the ring make them clunky and uncomfortable? Any problems with functioning?

Shockingly? This was less of an issue than I had expected them to be. I’ve been working on a detailed cross stitch and they’ve never got in the way. (And btw, the strings never got caught in the adjustable bits either!) Occasionally, there’s a small handled mug that I give an annoyed side eye to as my fingers cause a clink. The second iteration of the Celestial Eye was a slightly lower profile and suited my hands even better!

We did find that my partner and OT did better with the higher profile. Hands are complex little things with such incredible variation from person to person. My fingers are shorter so they need less clearance space for the knuckle bend. Others may find they prefer the higher clearance. All and all, it’s a relatively minor consideration unless you’re planning on doing some heavy work while wearing them.

They do make it a bit annoying to put your hands in the pockets of clothing designed for women… but isn’t that true of unadorned hands as well? Harder to slide under the stove, fridge, or really any space the cat rushes to try and bat it under if they fall off too! I’ll take it!

In the end, I feel confident that we’ve managed to come together and make something that’s beautiful and functional. No hyperextention. Comfortable for EDS hands as well as folks wearing it on just as a fashion piece. Lack of any pinching at adjustment points. I’m not sure they could be improved unless you’ve got a magic wand stashed somewhere. I’ve loved my previous ring splints; they were a way to add some style to mobility aids. These new creations add a whole new level of fantasy flare that I thought had become out of reach because of my needs.

All We Are Is Light Made Whole

So then we come full circle. Back to the idea of the Mending Collection being more than pretty rings, and part of something bigger. A story of coming back to ourselves as we were always meant to be this whole time. I’d say like a moth coming out of a cocoon, but I feel more like I’ve come out as a wasp. Trust me, sounds bad ass, until you realize they’re all generally low key still trying to survive in a world full of things trying to eat them.

With everything going on in our lives and current events, it can be difficult to pierce the darkness. We wrap up in it and use it like a pillow fort. Hope can seem dangerous or pointless. Stepping into ourselves and the willingness to reach for our dreams can feel self-destructive. Part of this is because we know deep down that we’re not going to step out from the comfort and warmth into who we used to be and a time we felt safer. Not only do we have to emerge from where we’ve hidden, we’ve got to rebuild into something new? Sounds down right rude.

I carry two little pocket pieces from a dearly departed friend to remind me that even in the darkness there’s still light to guide us if we’re willing to look for it. It’s more than darkness before the dawn. It’s embracing all we’ve experienced and all we are, seeing the light that’s always been there. Even when we’ve thought it extinguished.

Even the stars themselves are born from the fathomless darkness. Celestial bodies burning bright to let us know we’re not alone. Matter is not created or destroyed. It just changes forms. So maybe, just maybe, that same light that gives new life to your sleeping phoenix is just left over stars stuff we’re birthed from. We may have to rebuild and rediscover and readjust and all sorts of anxiety inducing concepts that lay the groundwork for growth. But the most beautiful part of this? We get to write our own story and with a consciousness we may have been lacking before.

I hope that you’ll wander over to Lumecluster to read Melissa’s blog and the journey from their perspective before you step away. Maybe pick up a ring for yourself along the way and rekindle something you thought lost. Maybe carve out a unique way back or forward to your dreams. Maybe even a bit of both. Whatever you do? I’m glad you’re here for the ride.

Disability and admitting that one is disabled should not be a social faux pas. Everyone is fully able-bodied temporarily. Whether it ends in a sudden accident or the slow creep of life, we’ll all face it in some way. Many of the more….let’s call them inspirational for the sake of conversation…terms come from a place of discomfort. You may think that this is the whole point! We don’t want disabled people to feel bad, so we use other phrases! However, that’s not what I’m meaning. It can get a little complicated, so let’s try and break it down a bit.

Take this as referring to all the phrases like “Differently Abled” and “Disability is My Superpower” and all statements that are similar. On the surface, it seems to be very much a positive thing. The statement even has a more positive birthing when it came about in the 1980’s from festival workers. From people wanting to be seen as human, equal, and worthy of taking up space. For a long time, people born with deformities or significant disability had few options. Often those options included freak shows or an institution. The phrase was originated to be used to help illustrate that just because they look different or have different physical needs, it doesn’t mean they’re less. Just because someone needs a wheelchair or a walker doesn’t mean they can’t enjoy the same things you do. Now, I want you to really sit with this for a moment or two. These phrases came about because we had to remind the rest of the population that people born differently were still, in fact, people…..

Take an honest amount of time to think about the implications. It may sound harsh against such positive sounding intentions, but look at it from a step back. The phrase came about to remind able-bodied people that people with a disability…are still people. To be quite frank, there’s still an uphill battle for those of us facing extra need. Just walk around with a cane and you’ll hear all sorts of reminders. With enough time, you’ll hear plenty of unwelcome opinions that come out of left field. Persuasions that if you use your aids too long you might never be normal again. Suggestions of trying yoga or some new essential oil from a popular MLM scheme. Concerns if you look young that you’re possibly faking your illness for attention. The simple act of using a mobility aid is approached by way too many people as something to police. I dream of a time when the most common discussion about one’s mobility aid is to compliment one that’s been decked out to be a cool personal accessory or tips for getting maximum benefit.

We’re in a culture that want’s to use “differently abled” to remind others that disabled people are human. Are we accomplishing this while an overwhelming number of people will jump at the chance to try and convince aforementioned disabled person that they should maybe just try harder to appear “normal”? We don’t need a shift in wording, we need a shift of culture. A shift in understanding. A shift in acceptance

Acknowledging that some of us have to have accommodations is just a fact of life. That being said? It’s still a major consideration and deserves to be thought of as such. I can still travel, but I have to pack medical bags, make sure my meds are all in order for long and short term, consider what mobility aids I need, work out how to travel with all my ring splints, plans for meals way in advance, look at communication availability of the location, and discuss with my partner or travel mates what to do in case of emergency. Spontaneous trips can be exciting, but they can also carry more risk than average for someone like me. Does that mean I never do such things? Pfft…no. But it does mean I’m more keenly aware of what I’m risking as consequences so it happens less often.

Whether work or pleasure, so many things have to be taken into planning of day to day life. That’s fine, but the more feel-good phrases of “differently abled” carry a hidden implication of small accommodations make someone more “normal”. A way of gently side-stepping responsibility of those around you to consider what may assist in your ability to perform and/or enjoy what is happening. A congratulations of how much you’re able to be like “one of us”….and now we don’t have to worry about it because you’ve got this! A permission slip to pass the buck. Even to the degree that when the impact of chronic illness/disability becomes overwhelming, it opens the door for a pat on the back and token phrases of “But you’re so brave!” to follow up. This slips into another facet of this impact….

You’re Such An Inspiration!

Sideways encouragement like being perceived as brave or strong…doesn’t hit how one might assume. Imma hold your hand when I say this….telling us that you don’t know how you’d survive if you had to live our lives? It likely doesn’t make the subject of your “praise” feel proud or renew their ambition. Many of us struggle to keep going and there’s a constantly growing number that have given up. It could be the lack of support, access to proper medical assistance, or simply the reality of what someone’s condition takes from them. What it comes down to? It doesn’t matter the specific reason because we’re not here to judge someone for how they feel in the moment.

There is a less obvious burden that comes with such sentiments. We not only have to navigate our own challenges to survive…but we’ve got to serve as an inspiration for you too. I’m fully aware that this is not intentional. Well, at least most of the people I know would never mean it this way. I’ll assume that if you’re reading this, you’re in the same demographic of intended support. Let’s pull the previous concept into this. Statements meant to remind everyone that we’re equally deserving and worthy. Yet what is getting brought to attention? Coping with something that was forced upon us. Not our creativity or business skills. Nor out wit or our grace with children. Our ability to *checks notes* do normal person things. Can you see how maybe, just maybe, that it chips away at our humanity? Even if it’s just a little bit?

This is related, in part, to all the inspirational videos that are popular. I’m sure ya’ll have seen at least one by now.

• Marathon runner was in a car crash and the doctors said they’d never walk again. By SHEER WILL POWER…they got prosthetics and started running marathons again!
• Artist lost their arms, but PERSEVERED to learn how to paint with their mouth!
• Child born with no legs PUSHED THEMSELVES to be a champion swimmer!
• Woman OVERCAME HER ILLNESS to get a degree!

The list goes on and on with possibilities. As we discussed with the term “differently abled”, it sounds positive and encouraging on the surface. It even touches on what was just mentioned and celebrates accomplishments of the individual. Yet…look at the highlighted words. If you can imagine for a moment that you’re faced with a similar disability. What might you feel? Would you be motivated to try harder? Would you simply be happy for the person in the feature?

Or…..

Would you perhaps feel shame that you have not achieved as much? If you see your loved ones posting these videos, would you feel like they acknowledge that you’re enough the way you are? Would you feel pressured to stuff your needs aside in preference of achievements?

It’s where the term “Inspiration P*rn” comes from. It’s a video that makes you feel real good. However it lacks the reality and real life experience. It gives you a glorified perception of what real interaction in that situation looks like. And you never see all the behind the scenes that made it happen.

Some of it is absolutely work that we have to do as disabled people. We have to also willingly step back from feeling such responsibility. That can mean different reactions for every individual. It may mean calling out loved ones on their impact. It could mean deciding that you’re not engaging in such conversations. It may mean brushing off the comments as if they didn’t happen. It could be discussing accommodations at work. It might even look like wearing mobility aids when before they tried not to. It may even look like reevaluating how they approach all their relationships moving forward. It may even look like therapy and choosing to give up on certain dreams for the sake of their health. How it looks will never be the same for all of us.

Unfortunately, this can also come with social consequences for us. Change, even when beneficial, doesn’t happen in a vacuum. It’s a community effort. It doesn’t mean that able-bodied people need to carry the entire burden, and the disability and chronic illness community can’t do it on our own.

What Can We Do to Encourage the Change We Need?

There are people doing the work of helping people step into the mindset in a more constant way like Imani Barbarin that has accounts under Crutches and Spice on social media. They tackle many subjects in a way that I can’t replicate and deeply appreciate. (It was actually a recent post of theirs that reminded me to pull this draft up from the depths of 2020 and finish it). Check out accounts like that.

Look at our own bias that may exist. Are we judging ourselves or our loved ones by a metric that asks them to flay themselves for the sake of reaching goalposts that were set by outsiders or allowing them to walk their own path? Are we expecting others in similar circumstances to ourselves to have the same priorities in the same way or giving them the opportunity to choose what they feel needs the most effort? Are we listening to what our disabled and chronically ill people are feeling and holding space or are we trying to skip to the part where we feel better?

Do we put ourselves on a pedestal because we aren’t in a position where a new building not having a ramp doesn’t impact us? Or do we notice that it doesn’t and make effort to change it where we can? Do we stop when we can access things we need or want to do? Or do we add to the voice of those still disenfranchised? Do we expect everyone else to carry our burden as disabled people? Or do we try to work with those around us? What do we think working together needs to look like? When we celebrate the accomplishments, is “despite everything you deal with” included either out loud or behind a bitten tongue? There’s no perfect way to approach change of this magnitude, but there’s the willingness to try in good faith.

If this hits funny, please remember that this is not about denying accomplishments or walking on eggshells. I’m not saying we SHOULDN’T celebrate the accomplishments of those that are disabled/chronically ill. I’m saying we should try and learn a mindfulness around it. Base it from a place of love and respect and we can learn to shift in a more authentic way towards true acceptance. It’s not going to be an easy path because we live in a culture that presses all of us to judge our worth from our ability to produce. However….

Look at this little hover fly on the flower. We don’t say, “Wow! You do such a good job and thrive even though you’re not eating dead stuff and poop like your cousins!” Nor do we say, “You’re so brave, little fly, pretending to be a bee. Out there doing things like eating and flying.” Such things likely sound absurd. It’s just a hover fly, doing hover fly things. It’s not out here worrying about whether its stripes are good enough. It just wants to fly and eat and mate and keep enjoying its little fly life. When it becomes unable to fly, do you think it will try its best to survive? Or do you think it would benefit from all the other flies telling it to do flower yoga so it can get back to things?

We’re all out here doing the same. I’m not working with my OT to find ways to do my art because I want anyone else to be proud or give me their approval. I do it because it matters to me and feeds my soul. At the time it becomes no longer healthy for me to do so…do you think I need to have my reasoning and choices ripped apart by those not living in this meat suit? Or do you think I just need someone to be there with me and give me the space to grieve? Someone to support my choices, even if they’re sad and inconvenienced by how I’ve chosen to put myself first?

I’m a bug nerd, so I’m not sure that suggesting that if you wouldn’t say *insert questionable phrase here* to this cute little hover fly, maybe don’t suggest it to your disabled/chronically ill loved one. While that works for me? Find something that works for you to help knock down some of what society has written into your world view. I’ve got faith in you to make the steps!

It’s not an easy road or a quick road. But if we all chose to head towards that destination? Even if we all take our own detours and arrive at different times. With joy just as much as frustration and grief. With missteps down the wrong paths alongside sprints towards the goal…we can get there.

Then you have the general state of what it’s like to live in the United States right now. Healthcare is getting more questionable. My POC loved ones are at a risk level that I never though would see in our lifetime.

Living with EDS and all its friends is a constant trial that takes so much focus and energy. It’s the well known feeling of trying to keep your head up in deep water. Everything else on top of that? It shifts the feeling to trying to tread water in the ocean during an incoming storm with ankle weights.

Despite this, I’ve been drawn to connect with people again. Despite social media being a black hole of doom scrolling. Despite that most of my groups have gotten increasingly hostile. Despite an algorithm that suppresses things I want to see in favor of flooding with politics and ads. Despite it being full of AI and influencers that are happy to spread misinformation if it means they get “the clicks”.

I’ve connected more with my tattoo artist at Envision Tattoo Gallery in Virginia Beach. We’ve been updating the website and discussing the exciting changes going on at her shop. Wanting to get more gallery showings as well as tattoo clients. Watching it shift into something really amazing that I hope to see flourish in the years to come.

I reached out to an amazing artist, Melissa Ng of Lumecluster. Discussions that started as asking her about my ring splints blossomed into so many different directions. Something that’s turned into a true sharing and opening of hearts. A meeting place of political concerns, life as being a minority, the idea of emotional kidnapping, what it’s like being an artist in today’s world, and cats…of course cats.

Even in the middle of the health hurdles, I’ve been speaking with more of my friends that have some of the health-issue-alphabet-soup cross over. I spent hours on the phone with a friend in Texas as she helped me come to terms with the fact that I’ve always had asthma…it’s just been overlooked. How playing flute for years and years actually had an impact on inadvertently fooling the pulmonary function tests I took all that time ago.

And somehow…I’ve made even more new friends along the way. From visitors to the museum I work at to getting to know people in the insect identification groups I help out in. I’m teaching some people how to make pine needle baskets and have served as a drop off point for some unusual spiders. I’ve learned how to play new board games and got the opportunity to share in Japanese sweet potato coffee cake!

We are not meant to live and thrive alone and hyper-independent. I know this on an intellectual level. Yet it can still creep up and make me question my life choices as I’m networking like a little spider. A part of it feels counterintuitive, that I should be wrapping up in a fuzzy blanket and only keeping up with contact with a triaged number of friends. I want to pull in and be comforted in the illusion of safety. I create art and have discussions on philosophy and culture with new friends…and wonder if that is the best use of my time.

But that critic is through the lens of Western Culture and everything that comes along with it. The push to be “Better than the Jones'” as we used to say. We have to be the loudest activists. The most popular social media accounts. The most active advocates. The most productive disabled people. The most skilled artist with high sales. Because if you’re not running yourself raw and ragged to be consumable….are you even worthy of anything good?

I don’t have all the answers. I can’t give you a magic solution for how to join a community or build a new one. Though I don’t regret a moment, there’s been missteps and I’ve lost friends. I’ve been hurt and had to cut people off just as much as I’ve build new and amazing connections. But my personal take? The joy is worth it. The comfort we get from having someone to talk to about the good times as well as times that are….less so. To hear that we’re not completely crazy for being worried about the state of the world. Maybe occasionally to even have someone step in and say maybe we need to look at a new perspective.

The opportunity to be seen. To have those moments where we can see the bits of stardust in each other amidst the chaos. And maybe even to rediscover a different kind of love. For each other. For the world we live in. But most importantly…for ourselves and who we are at our very core. Despite the human meat wrapper we’re all riding around in with a messy sentient ball of bacon jelly at the wheel. We can rediscover a kindness and use it to help sustain us. A kindness out of spite, if you will.

I grew up in an environment where anger was not acceptable. The oldest of 3, I was not to get angry at the younger siblings, I should be understanding and lead by example. I shouldn’t get angry at real or perceived injustice, I should extend my empathy and forgiveness for what someone else is going through. I shouldn’t get angry at racist statements or actions, but instead try and understand what that person may have grown up with to make them who they are. I shouldn’t get angry about feeling mistreated, be thankful because someone else has it worse. If you get angry, you’re just as bad as they are. You’re falling for their trap if you allow yourself to feel angry.

So much of my life up till now was full of people older than me trying to force the wisdom of pacifism in all ways on my heart. So many platitudes to reinforce it like how holding a grudge is holding onto a hot coal and hoping the other person gets burned. How not forgiving someone and allowing anger to root only hurts you. They spoke as if letting yourself feel that emotion is one of the most dangerous things you could do and one of the biggest failures you could ever have. A marring of your soul.

They spoke as if permitting anger to gain breath, would be a sign to everyone around you that you were unworthy of any kindness or acceptance or trust. That if you allowed yourself to get angry, and especially if you listened to anger in any way, that it made you unworthy of future forgiveness.

Let me tell you…that takes an awful lot of effort to unlearn! Not gonna lie, gonna blame Catholic fear mongering as a big part of it in the early years. “Oh noes…if you get mad and don’t forgive people, you’ll end up suffering for all eternity!” is a pretty big motivator for a kiddo. But that kind of teaching also paves the way to allow predatory behavior to thrive. It’s one of the many reasons that victims can get caught up in focusing on the positive aspects of a person instead of taking action when necessary.

From a Warning Call to Throwing Hands

Now this isn’t to say to let your anger off the leash completely and let it take the wheel. Anger, like all of our emotions needs to be met with awareness and moderation. If we let joy run the show, many of us would likely be in just as much trouble but for completely different reasons. Same with sadness, love, fear. As much as I would prefer to never mention the big mouse corporation, there’s a recent movie where all the emotions are anthropomorphized into their own being inside the head of the characters. In the plot, joy was causing problems. Not sadness or fear or anger. Joy. Because we need to learn to accept and work with all of them as all of them can complicate our lives. Today, however, I’m focusing on anger.

Anger is important. It lets us know that something is wrong. That something doesn’t feel fair or true. Whether someone else feels the same way can be taken into account, but we all view things differently. To warn us that someone else is in danger. To strike the fire of motivation to change what we feel is wrong. To encourage us to stick up for ourselves and for others. As a quote that gets passed around the internet often says:

“Your anger is the part of you that knows your mistreatment and abuse are unacceptable. Your anger knows you deserve to be treated well, and with kindness. Your anger is a part of you that LOVES you.”

I like to think of mine as a rattlesnake. Coiled. Observing. Waiting. Misunderstood. And no longer willing to be silent.

She gets suspicious, and I get a tightness in my chest. Upset enough to give a warning rattle and I can feel the buzz in my arms. Further antagonization and it becomes difficult not to give a warning bite with venom laced words, not enough to harm but enough to say whatever going on isn’t welcome here. Stop. Back off. Past that point and no matter what act is taken, you’ve past the point where I’m willing to give you grace…at least that’s how it feels in the moment

I’ve learned to love her, and respect her…my little internal rattlesnake. But it took and awfully long time to get to that point. I still catch myself thinking that I should scold her for rattling her warning or bury her in the sand when she starts to tense her coils. Feeling like it’s shameful to have the ability to put venom into my words or actions. And I still have fear that letting her exist will cause unforgivable hurt to people I care about.

But…just like a rattlesnake…you have to learn to work with it. Listening to what is making those coils tense or that hair stand up or that pit in your stomach to form before it gets further. Showing that part of yourself that you do, in fact, hear the warning of alarm bells. Whether the next action is to walk away or to spit venom or to remain still and observe, we can learn to manage the anger and work with it rather than wait till it gets overwhelming and near impossible to control. We need to do this because sometimes….sometimes that warning signal is wrong.

However you envision your anger, it has learned what it needs to react to in order to keep you and others safe. And just like any other living thing, it can learn that some things that are a danger…when there’s more to what they’ve experienced. So we learn to listen without feeling a need to act immediately.

So yeah, you’re allowed to get angry at someone’s tone of voice sounding disrespectful. You’re allowed to get angry for not feeling heard. You’re allowed to get angry for people taking advantage of you. You’re allowed to get angry when people you trust betray you. You are allowed to get angry.

The trick, is learning what to do when you get there. Is the anger for a reason you can fix? Is it going to help motivate you to advocate for yourself? Is it something you feel so strongly about that you need to act? Are you prepared for consequences or are you just allowing that rage to talk you into it? Can you learn to find a talking ground with your anger to help discern real threat from perceived? Can you learn enough to handle it similar to those comfortable with handling a snake or a spider?

I don’t have the answers for what is right or wrong for you. I’m still learning to talk with mine. All I know is that it’s important to not cut off the tail of the rattlesnake and pretend that she’s tame and that anger doesn’t exist. In that way, anger definitely is a poison. The more you pretend it isn’t there…the more it builds resentment. Ignoring it just allows it to grow where it’s out of sight to where it will explode out one day…and probably at the worst possible time.

Let it be uncomfortable. Block those people that get under your skin. Call out that coworker. Get to know your inner truth better. And screw trying to be this perpetually higher than thou never feel the seed of rage ideal.

Make friends with the rattlesnake.

It’s much better than being afraid of it.

I have been using my Silver Ring Splints for over 5 years now. This year, I had to add 8 more to my collection as my hands continue to degrade. I deeply appreciate their support as I have reached a point where I cannot write without them due to my easily dislocating thumb MCP joint. Holding a pen has become quite challenging. Over the past 5+ years, I have adapted to wearing them every day at work, where I often encounter people who comment, ask, or just stare awkwardly. I believed I had successfully developed confidence in using these mobility aids. I have become skilled at explaining to strangers that they are not mere jewelry, and I stand my ground when faced with inappropriate comments, always maintaining a respectful approach. However, I was invited to help moderate a wildlife identification group for the Carolina’s on Facebook…

I already admin a local wildlife group and have been a part of a global group called Antman’s Hill, so the group themselves aren’t an issue. I’ve become a big advocate for helping people appreciate insect and arachnid wildlife, so I’m quite used to confrontation. The local group, most have known me for a number of years so they’re used to me. The global group? I don’t post a lot of my own photos because they’re already insect based. This new group though? We’ve got tons of people that will speak for all sorts of other wildlife and tons of folks that will post birds, deer, coyote, otters, and the more ‘loved by most people’ kind of photos. So, to the surprise of nobody that knows me in person, I posted a photo of one of me handling one of my spider friends.

Most of the comments were a mix of exactly what I am used to. Appreciation, curiosity, shock, and a sprinkling of fear and hate that had to have active moderation. What I wasn’t expecting (and I really should have) was a lot of comments making note of my splints. For all the work that I’ve done on the subject, this actually threw me. I’ll share just a few of them. None of them were negative in any way. There were a few EDSers that called me out, which to be clear isn’t an issue it is just a note. There was someone that informed a commenter that my “jewelry” was medical.

Let me be very, very clear in saying that none of this is actually a problem. Nobody commenting was in the wrong.

I found myself in an internal conflict. Should make a point to take off my splints before taking any photos that I’m going to share? Was I subconsciously looking for attention? Should I keep my EDS out of wildlife groups?

I sat for a while with this. I didn’t want to get the perspective of others quite yet, I wanted to make sure my thoughts and stance were my own. Before I share the conclusions I came to, I want to make sure that just because this is where I came settle, it is in no way saying this is the stance I feel others need or should adopt. This is where I personally am in my life and my journey. You are not less if you do not hold the same views or perspective as me. That being said….

After long consideration, I have realized that what I was questioning, was internalized ableism. Ableism, is discrimination in favor of able-bodied people. Internalized Ableism, is where your own actions and thoughts try and put able-bodied expectations to yourself at a subconscious level. My rings aren’t jewelry. They’re mobility aids. If I needed a wheelchair, it would be like considering taking photos without it so people didn’t see it and make comments. Hide anything that brings attention to the fact I’m disabled. It made my heart hurt a bit. Realizing that I was considering making a point to hide something that is a part of who I am. My EDS isn’t something I have chosen to have. My splints aren’t something I wear for attention, they’re something I wear so I can do things that feed the light in my soul. I can still choose whether or not I have the spoons to interact with those comments in the moment, but I am not going to remove something that helps me live my life with joy for the sake of appearing more normal. So I will continue to post cool pictures I get of our tiny wildlife friends and remind myself that a goal of mine is to normalize having to use mobility aids, speak about chronic illness, and normalize being disabled in everyday life. It’s also a very deep reminder that no matter the work we do, it’s absolutely normal and okay to still discover bits of ableism hiding in our subconscious. It’s all about what we do about it when we discover it.

Again, I don’t hold expectations of anyone else to take my stance and run with it. It is absolutely valid if anyone wants to take off their splints or hide other mobility aids for whatever reasons. We are all in different points in our journeys and our paths are our own. My chosen stance is in no way a judgement on anyone who stands otherwise. Find your joy. Nourish your spirit.

Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them. To die—to sleep,
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to: ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep, perchance to dream—ay, there’s the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause—there’s the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th’oppressor’s wrong, the proud man’s contumely,
The pangs of dispriz’d love, the law’s delay,
The insolence of office, and the spurns
That patient merit of th’unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovere’d country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience doth make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry
And lose the name of action.

Hamlet, spoken by Hamlet

While Hamlet is speaking of a more permanent death, what I’m going to write on today is a smaller kind of death that is related to that of significant change that is not always something we choose to take on. The tiny deaths that happen every time a new part of us gives out and forces us to adapt our way of life.

For me, I’ve recently been facing this with my ability to create art. While I write in my spare time, I live for my art. It’s partly how I manage having EDS and its various complications. It’s how I grieve. It’s how I process some of my psychological trauma. It’s how I distract myself when pain is constant. It’s how I show love. It’s how I survive. I do so many different types of art that I can’t keep track anymore.

And now, EDS threatens again to take it from me. I faced this before just a few years ago. The connective tissue in my hands have always been extremely hypermobile, but my left hand had suddenly developed exceptional pain in my thumb. I couldn’t knead clay. I couldn’t bead. I couldn’t even wash my hair efficiently. Thankfully, I had just started seeing a rheumatologist that was a bulldog against my insurance and got me a full set of swan necks and a thumb plate for my MCP joint that started to fully dislocate with minimal effort.

I wrote a full other post about my ring splints to talk about it before, but it was done long after the period of adaptation. I was able to type without taking breaks to cry and scream how I hated the feeling. I had already started beading with regularity at that point, rather than throwing a piece only a few rows in because I couldn’t get the needle to do what I wanted. I was writing almost with the elegance I expected of myself, not the chicken scratch that I fought to get out with the new splints. I did this intentionally because I wanted to show that it’s totally worth it! It was worth all the screaming and crying over the difficulties and discomfort.

But, now I’m facing it again. My right hand…..my dominant hand….has betrayed me. The MCP freely dislocates and is constantly in significant pain. My hand that holds the paintbrushes. The hand that writes. The hand that holds the carving tools. That hand is now unable to hold anything without shooting pain.

The hurdle at hand (mind the pun) is whether I want to put in the effort to adapt yet again. It may seem to the reader, that this is an obvious thing. If art is life, then of course I would choose to adapt! While, yes, I’ve ordered a thumb splint…I assure you that it was not an easy decision or a simple and pleasant experience to decide this. It’s the turmoil of facing such a thing that I wanted to shine a light on.

The first aspect of this is the gut punch that is yet another failure of the body caused by Ehlers-Danlos. I’m angry. I’m short tempered. I’m heartbroken. I’m grieving. Whether or not I adapt, there’s a grieving process that comes with the small death of yet another thing I’ve gotten comfortable with having in my life that will cause significant change no matter what I choose to do. It happens with everybody and every body. Most experience it with old age, but some of us experience it younger than we ever should for various reasons. This only adds to the rage and grief. Angry at people who get to experience a full life of enjoying things they love without such challenges. Angry at people that have their mobility and abilities cut short from their own obvious poor choices because it feels like they’re reckless as a toddler. Angry at people with acute and curable hurdles because they can go back to normal. All of this is a lot of anger to process. I’m grateful to my sister, and I’ll take a moment to push her books by saying you should look up Kahaula on Amazon, for all of her help during this time to keep me grounded as well as helping with a safe space to scream without judgement.

As the grieving is processing, there’s the decision of whether to adapt or to let go. To be, or not to be, if we go back to the quote I used above. Because each option carries with it emotional baggage. Neither is the right answer or the wrong answer. They just are. And this is something of a problem in the chronic illness community as well. The overwhelming battle between saying “you’re not your productivity” while pushing “but don’t give up on things you like to do” to anyone facing such a problem. It’s a bit hypocritical and I don’t think we acknowledge that quite enough.

It’s not as simple as forcing yourself to be cheerful and pushing onward. It’s evaluating your own mental health and deciding what’s best for you in the long run. Because sometimes, giving up something you love, is actually healthier than trying to force yourself into adaptations because you are pressured into not giving up. Only you can make that decision for yourself, and that’s important. This is also a great point to mention that a therapist can be an important sounding board for such things.

For example, with my art, I know the new splint isn’t going to be comfortable, no matter how skilled the splint maker is and how perfect it fits. I know it took me several months to stop shaking my hands to stim from the discomfort last time. I know I’m going to absolutely hate the process of adapting because it’s learning skills all over again. It’s not a pretty process. It’s not like the inspirational video posts you see where someone disabled just tried hard, had a few frustrated moments, but pushed past it with joy and everyone was celebrating YAY! It’s trying.

The other side of this is knowing that it’s uncertain how long any adaptations I get used to will actually last. I **JUST** got back to painting my feathers even semi-regularly. Right after I fully adapt, I’ve got to go through the cycle **AGAIN**. It’s one more thing on top of the never ending accumulating mountain of things I’ve got to manage with this damned disorder and the constant malfunctions it causes.

It would be easier to just let it go. It would be less stress on me and my slowly falling apart hand. It would be less stress on those around me as I go through the emotional turmoil of the process to adapt. It would be more certain than trying only to possibly be let down as soon as I fine tune my adaptation. After all, I’m not my productivity. I’m not less if I come to the point that I can’t do my art. I’ll be sad, and I’ll grieve, and I’ll be angry…but I’ll eventually put my energy toward something else to keep my heart and soul occupied.

Is trying to keep doing art only speeding the decline of my hands? Am I creating a path to permanent disability that’s paved with dried paint and wood shavings? Could I extend the life of my hands by giving up most of my art? And could I live with myself if that’s what I chose to do?

There isn’t a right answer, only what’s right for me. Just as when you face your own hurdles, there’s only what’s right for you. I took a long time contemplating all the angles before deciding what was in my best interest. I can’t see surviving without my art at this stage in my life. As soon as I came to be aware of that, I made arrangements to order a splint to suit my failed MCP joint. And I’ll take all the rage and spite and fury and channel it into moving forward

I’ll cry and scream and probably throw a few innocent paint brushes. I’ll judge myself much too harshly for not adapting faster and producing the quality I expect from myself. I’ll get angry at the loved ones that remind me to be kind to myself on this journey. I’ll curse the gods and the body I’m in. I’ll do this all in spite of how much I’ll try not to. I’ll mask the myriad of emotions like the ocean hides Her rip currents until the wave becomes too much and crashes over. And I will do all of this not because I want to be an inspiration for everyone to push through and adapt no matter what. I will do this for one reason, and one reason only.

Because it’s what I’ve decided was important to ME.

Not to family that wants to see me continue. Not to people who want to commission me. Not to doctors that have their opinions on both sides. Not to people I work with that think I can adapt to almost anything. Not to my partners that both know what being able to create means to me. Not for other people to utilize for their own motivational needs.

For me.

That is what I want you to get out of this. Adapting is fucking difficult. It’s not a Hallmark movie with one sad day and a perpetual cheer squad. It’s horrible and I refuse to sugar coat it. It has potential for amazing things and I know that I’ll also cry tears of joy when I’m able to paint to my own standards again. I know the pieces I create out of all that anger and spite will be incredibly emotional statements that I can look back on. For now, it’s worth all of the struggles I’ll face in order to get there. While that makes it easier…it doesn’t make it EASY…and that is a significant differentiation.

It also brings me a great comfort that when I choose to let my artistic side rest for good, that it will be on my own terms and my own choice. I’ll know that I tried, and I know that I did everything I possibly could to extend the ability of my hands by doing things like wearing protective gear and mobility splints. So when that time does come? I don’t think I’ll ever be ready, but I’ll know it’s time. I won’t be a failure because I’m not somehow pushing through to find a way, just like I wouldn’t be failing if that was my choice right now. I’ll have the same comfort then, as I do now.

That the choice I made was mine, and for me alone.

I wish all of you the strength to make all of those hard choices that EDS, or any other hurdle, forces you to face for you, and you alone. Wishing it won’t hurt is futile, so instead, I’ll just wish you find peace in it and live your best life.

Over the years, I have done a lot of work with the trauma I’ve faced. One of the things that I’ve come to rely on is my memory. Now, I’m aware that every human has a flawed memory. But I had the skill of recalling conversations down to body language, tone of voice, and expression. It was a survival technique my brain picked up along the way as gaslighting was something I grew up with. It was also one of the challenges I’ve had, when there were memories I didn’t want to have on instant replay. Whether it was a positive or negative…I still relied on it. It was a point of pride, sometimes even dark humor as well. I still remember events from childhood as if they happened last year. I also knew that the time with one of my ex’s was a time I tried not to remember. I actively pushed those memories down. I was still aware of them, though. I touched on some of it when I wrote THIS ARTICLE here.

Recently though…I was brought to the sudden realization that there were a whole vault of memories I had subconsciously repressed about that specific time. I had literally had them so tightly locked away that I had no awareness that they were even there in the first place. The funny thing, at least to me, is that it wasn’t trauma that caused them to resurface. It was a string of good things.

I met a new artist friend that did an incredible piece for me. I love it so much, that I already planning a few more pieces and will showcase them in a different article that isn’t tainted by the rest of the subject matter. It is a risqué rendering that features some of the hidden aspects of having Ehlers-Danlos. I had to have someone take photos of my body in order to get this, and it was a bit of a challenge on facing down body images. But let me tell you, this guy was utterly fantastic through the whole process. Encouraging, funny, kind, and supportive of the whole project. It took all the anxiety I had and washed it away. In the end, I got a spectacular work that is proudly hanging in my living room.

Relationships are also great! One of my partners has decided to get a bit more experimental and it’s been fantastic! Even the recent commission plays into that as it helped me get more comfortable with my body the way it is. So he’s been thoroughly enjoying the new turn! The other half is getting a new job and we’ve been cuddling and going for walks. And…I guess this is where I realize that I’ve come out as polyamorous. Because for me, it’s important to the rest of how this plays out so no turning back now. Might as well add that I’m a bi demisexual that is Two-Spirit while I’m at it. There. It’s all out there now. Because I’ve lost the fucks to give on it.

So everything was fine. Everything was great. I’m working on new projects, making new friends, networking with new friends……..and then….

I knew I was stressed for reasons I couldn’t put my finger on. I chalked it up to all the normal stuff. Weather. Pain. You know…normal EDS bullshit. Until the very last straw. My one partner decided he wanted to give oral. We’ve had discussions on how I’m just not comfortable with it, but it was never for a reason. It just…was. I always just kind of disassociated during and felt weird after. But he was SO sweet about everything. And SO cute. It was never set as a hard no, only a soft no, so when he was being coy saying he “wanted to play, but his hands were cold…but he could use something else” I got swept up in the moment. Until I didn’t. It was the strangest feeling of wanting to be there and wanting to run and mentally lock myself down at the same time. Even after, I just felt distressed and uneasy.

It wasn’t until the next day that everything came forward. I remember the ex being sexually abusive and mentally abusive. But somehow…my brain had taken a large collection of some of the worst experiences and hidden them from my conscious mind. I knew it happened. I know of people that have missing memories. My other half has missing memories. I just…didn’t think I went through anything worth it happening to me. I thought what I remembered was bad enough that I would obviously recall the rest of it.

Things came slowly at first. It wasn’t like the world was ripped away from me. It was a brief memory flash that was completely unfamiliar. So I mentally dove after it because I was confused. The deeper I went, the more came flowing towards me. I felt like Pandora opening her box, but instead of everything escaping…I was being pulled in.

The details of what I remembered are not something I will be sharing. It should suffice to say that what he did…was turn sex into an unpredictable and violent act. And it was a number of years before I was able to get free. What I will say, was that it was the positive interactions that I had. It was talking about my own photos and it being a fully positive experience. That during something my body remembered as traumatic, I was relaxed and unafraid and with someone that I know is safe. They were such a complete contrast to everything that came up, it’s the only thing I’ve been able to come up with as to why that was the trigger.

The flood of emotions that I experienced during this…I can’t even properly explain. It was being lost in the middle of a hurricane at the worst of the winds and the waves. I felt betrayed by my own mind. I felt like I had gone leaps and bounds backwards in all my healing because of things I had forgotten. I felt like I couldn’t trust my memory. I felt sick and disgusted. I felt the violation all over again. And before I got lost…I called my zebra sister. She worked with victims before and I knew she was a safe place. My partners…all I could feel was that I had lied to them or betrayed them by not remembering. I felt too dirty and tainted to talk to them. That it wasn’t fair. That I wanted to enjoy things with them. That they shouldn’t have to make accommodations for things I didn’t even remember. That it wasn’t fair to feel the way I do towards people that love me so much. So I called her.

I will repeat the important parts for anyone else that needs to hear them. And I plead, that if you ever face such things yourself, that you remember this. No. It’s not fair. This trauma turned sex into a violent act for my body. It’s not my fault. It’s not their fault. It is the fault of the one that caused the trauma. It isn’t my fault for not remembering. I am not weak for not remembering. I am not flawed for not remembering. I am not broken for not remembering. My brain did exactly what it was supposed to do, and it did such a good job, I didn’t even know it did it.

It kept me going.

20 years away from when I first met that monster…and my personality is completely different. I no longer am the young lady who believed that if anyone showed her attention, it was simply to get sex because she was otherwise worthless. I no longer am the timid thing trying to make everyone happy. I am no longer the person trying to be so small she hopefully goes unnoticed and left alone. I am no longer hiding behind walls of reinforced mental concrete.

Hiding the horrors of what happened…allowed me to get this far. I share raw stories so that others may not feel so alone. I have a rich life of friends from all over the world. I pushed myself to get over debilitating phobias. I express myself with my artwork and am not afraid to challenge when necessary. I’m actually quite proud of how far I’ve come.

That it is coming up now, because I’ve become the kind of person that CAN handle it. That my subconscious felt safe and confident enough that it drug the festering bag of rot so I can get rid of it. That is how I’ve taken to processing it. I got past so much, and now I’m at the point where I can get into the heavy stuff that would have broken me if I looked at it before.

I did manage to talk to both of my people about what I was going through. Why I had been upset and tweaky. Why I didn’t want to be touched. The initial feeling was that all of that progress was lost. I was reminded by my other half, that I was already pretty messed up when he met me. I was doing the best that I could do just to survive what I DID have on my plate. And there was a few times in those early years of meeting him that my body did try to go into an early exit. Nothing intentional on my part, it just…was not okay. Looking back, my body remembered what my mind hid from me. Every time I disassociated during sex, was because it remembered and was doing a kindness in its own way. My partner took the other route and reminded me that I’m still the beautiful woman that he has loved this whole time. For him, nothing has changed when he looks at me. They both hate what I’ve gone through, and I got plenty of love and support. But for them, they never had a glimmer of disgust towards me or hesitation to hold me. Rage at the ex….but nothing but love and support towards me.

All of this just reinforced that it really was time to get rid of the rancid aspects of what had been carried with me this whole time.

So I took a full two days, and let the memories come as they would. I let them go. I screamed, and cried, and wailed, and threw things, and slept, and did the same thing the next day. I faced all of them. Every horrific memory that swept through my mind. I faced every last one. I didn’t go looking for more, but I faced what came up.

And the strangest thing happened…

I realized that I wasn’t feeling scared of my ex. I was livid. I wasn’t angry and upset with myself for going through it or not escaping sooner. I was raging at him. I wasn’t disappointed in myself. I was full of disgust for those that instilled those feelings of worthlessness of the self before I met him. In those moments, I realized just how much truth the words of my zebra sister and my partners rang true. That I was a completely different person that who I was 20 years ago. That as terrible as this experience was, and horrible as those memories were to face…it was the fact that I could face them. They still hurt and they still were something I’d not volunteer to go through again by any stretch. But I could. And my brain, as much as we argue, somehow knew it was the right time.

I don’t know if there’s any others back there. I don’t want to go looking. This is one time, where I can say that I trust my subconscious to know when it’s time to let me know if there’s anything else. But as I’m writing this, I’m no longer overwhelmed with emotions. I’m not breaking into uncontrolled sobs just because someone texted me if I’m okay because they’ve not heard back from me in a few hours and that’s unusual. I’ve been back to work and getting back to all my classwork that I missed during this little meltdown.

I’m grateful that I had all of these positive things that came together, even if it triggered something unpleasant. I’m even more appreciative that I’ve gotten to be the person that is able to see all the fantastic things I’ve got going on and celebrate despite the negative. Even though there’s more to go…repressing the memories wasn’t something that was bad to do. It wasn’t a fault or a flaw. It was actually something pretty impressive. So I’m even grateful for my brain’s ability to do that.

So if you end up with memories that come back. Or you have holes in your past. Take a moment to thank your brain for looking out for you. You don’t have to like it or being excited about it. But just try to be grateful that you’ve got such a cool survival mechanism. Call a trusted love one, call a trauma therapist, call whoever you need to be safe, absolutely and always. But you got this far and I’m proud of you!

And just for one final…something that gave all that emotional energy a place to channel…this is one of the songs I used. Hope you enjoy it as much as I needed it

Someone I care about shared a quote. My knee-jerk reaction to this was to think that it’s absolutely beautiful and brought me quite a bit of joy. The quote was from the book Beautiful Lies, by Lisa Unger and said, “When you start to know someone, all their physical characteristics start to disappear. You begin to dwell in their energy, recognize the scent of their skin. You see only the essence of the person, not the shell. That’s why you can’t fall in love with beauty. You can lust after it, be infatuated by it, want to own it. You can love it with your eyes and your body but not your heart. And that’s why when you really connect with a person’s inner self, any physical imperfections disappear, become irrelevant.”

And still…I find this to be a beautiful statement. It’s something that a partner of mine discussed on multiple occasions, the most significant of which was when I was first facing ankle surgery and the diagnosis of Ehlers-Danlos was becoming horrifyingly inescapable. I was scared. Scared that I would be a burden to those I loved. That all they would see is my inability to do things with them. My hurdles. My splints. My crutches. My pain. That’s all I would become, a reminder of ugly things in life and they’d stop wanting to be around me because of it. He was very gentle as he spoke to me and asked me to elaborate. He listened patiently. Though my sobs and my long-winded rambling. Then, with a smirk, he nodded and said, “Ah. I see. So, what you’re saying, is that if I fall off a roof and get hurt that you’ll stop loving me?” I was appalled that he would say such a thing and told him so! He then put on a very confused expression and pointed out that was exactly what I expected everyone else to do, “Are you saying your better than me?”, and the smirk returned. The conversation took turn and we discussed that I need to maybe accept that I’m loved in the same way I love others. That’s it’s more than looks, or what they can do for me. It’s who they are as a whole.

So when a friend posted this quote to her social media…those memories came up and filled me with a love that is all encompassing and rooted deep in the soul. A reminder that what love means, isn’t your productivity or whether or not you’re sick. You intelligence and your skill doesn’t make you less or more worthy of love. Nor does having a degenerative disease make you less deserving of love. Because being human and sharing love is MUCH bigger than any of that.

But then…the thoughts took a turn…

I’ve written about difficult times growing up. How I put myself in therapy and had to digest the fact that I had treatment for cPTSD and not just depression. But all the acknowledgement and processing for all those years, and sometimes it still pops up out of nowhere. Memories strong enough that I can still see the whole scene play out and hear it play in my head word for word. Having your mother tell you that your bra size was too big, which means you were fat and needed to watch what you eat…I was still in Jr. High and wasn’t even over 100lbs. I just have a big chest. Or having her pinch your belly skin when she walks by and reminding you that if you were fit, she wouldn’t be able to do that. Nitpicking about how my hair was cut. What clothes I liked. How I sat. It was all superficial nonsense.

Which, some of this can be normal. Parents are supposed to help teach their kids how to be functional adults. So no, your parents telling you that you’re not going to a family holiday dinner dressed like you’re going to a GWAR concert isn’t them being abusive. But it’s also supposed to come with praise and acknowledgement of good things. An encouragement of passions. If all they do is nitpick on your outward appearance and superficial traits while ignoring all of the beautiful, unique, and incredibly important traits about you that make you the fantastic person that you are? This is probably something you need to tear apart and inspect a bit. Parents are human too, and sometimes personalities just clash. But sometimes, unfortunately, they’re just not capable of providing actual love. Maybe they’re hurting, maybe they need therapy, maybe they’re just mentally unstable. What matters there is you take a healthy look at whether they’ve been supportive and maybe it just looks different than you’d prefer…or…whether they’re honestly not and you need to reach out to get yourself the help and support that you deserve. No matter how old you are or whether you parents are even alive or not.

The quote then hurt. It was a reminder of people that were supposed to be showing me that love as a child and what I didn’t get behind closed doors. Feelings of jealousy for people who grew up in families that loved their kiddos. People with kids who share how proud they are of them and you can tell by the interaction that they mean it honestly, and not just something they are sharing to get praise for what a good parent they must be.

Then…the thoughts got darker

Because the quote can also be used as a tool of manipulation. This is even more common if you grew up without experiencing an environment to grow up with in which you experienced love. If you don’t know what real love looks like? It’s awfully hard to recognize it from toxic relationships.

Every relationship has hard times. No matter how much love is involved, everyone gets stressed. Everyone has a breaking point. Everyone has a line in the sand. And everyone is entitled to their limits and taking steps to ensure their own mental and physical health. But abusive situations often contain a lot of guilt trips and passive aggressive statements surrounding the idea behind this quote.

If you REALLY loved me, you’d understand. If you REALLY loved me, you’d give me another chance. If you REALLY loved me……

I lived in a relationship like that for too long.

Yes, love means that you absolutely love the person despite their physical state, despite their mental illness, despite their trauma, despite their hurdles. Because the person is so much bigger and so much more than that alone. HOWEVER!!! Love doesn’t mean that you have to put up with being abused because they’re not putting in the work with their own issues to not hurt you. You can love them, and still walk away because you are important enough to not be a verbal or literal punching bag. Love isn’t being expected to fix their problems by constantly modifying your behavior so they don’t have to. Love isn’t being expected to constantly allow your boundaries to be crossed and disrespected.

Have open and honest discussions about any problems. Walk away when you feel you want to scream at each other. Find compromises when you can and work together on other options when you can’t. But do not bully the other person for having boundaries and do not allow yourself to be made to feel less human because you are sticking to yours.

I’m keenly aware that this is a difficult subject amongst the zebras. There’s so many in the discussion groups that I see where their partners up and leave because it just got too much for them. I’m not in their relationships, so I’m in no spot to even speculate on what happened or if there were other things that could have been done. I empathize with them because that’s an incredible pain, even if it happens to be mutual. I illustrated that fear in the very beginning of this post.

And I wanted to be angry about the quote. To make corrections and say that’s not always the case and how that can be a bad thing too. To warn people not to post things like that.

And the more positive turn that I promised…

Despite all of this, and some of the darker more intimate aspects of this thought process that I refrained from the elaboration of…I came back to that initial feeling I had about this whole quote.

I sat with all of these thoughts for a few days. I let all of the memories pass through, gave them their space, and “talked” to them. At risk of sounding like I’m anthropomorphizing them, the two sides kind of argued in my head. One was screaming that the post was dangerous and full of misinformation, while the other just kind of sat and softly smiled…with love. Simply existed, full of the love I’ve experienced thus far.

One of the things my therapist and I have worked on over our time together, was that if you didn’t have the love growing up? Give it to yourself. Be that source of love for yourself. Get help if you are incapable of doing that, because all of you are worthy of feeling that love. Doesn’t matter if you’re healthy or a zebra that’s a constant medical train wreck.

You are worthy of love.

You deserve love.

You can experience love.

Love doesn’t have to be happiness all the time. It doesn’t mean there will never be arguments. It doesn’t mean there will never be pain. It doesn’t mean hurt will be less in bad times. It doesn’t mean personal limits are negligible. But it means that you’re seen and appreciated for all that you are. That you can have the more painful discussions cushioned in that love you have for each other.

I didn’t have the “bad feeling” reaction to the quote because there’s actually something wrong with it. I had that reaction because the trauma part of my brain was trying to give me a warning to protect me. To remind me not to trust blindly just because *I* feel love towards someone. To remember that love is much bigger and much more significant than people who abuse the concept for their own purposes. To remember not to bleed my trauma over beautiful things, and instead sit and “talk” with it and divide the trauma response from the reality of the situation.

It’s also served as a personal reminder to how far I’ve come over the years. To remember that trauma isn’t ever fully gone, and that’s okay. It’s not a personal failing when it comes back, it’s an opportunity to reevaluate your beliefs and adjust or take action if necessary. To appreciate the love that I have in my life. And be grateful for the reminder that for as bad as things were…it’s learning to give that love to myself that opened up the ability to accept it from others. Though it can still be touch and go sometimes because brain chemicals are a pain in the ass, and it certainly doesn’t fix everything, it makes the world so much better to live in. Give the love you need to yourself, and it makes it easier to express it in healthy ways to others.

Because real life and human nature will always have boundaries. But love? Love doesn’t see the little things. It sees the most important things about ourselves and embraces the light that our soul creates. And feeling that, even if it’s just from yourself, is worth facing every hardship and every hurdle.

I wish all the love to each and every one of you.

So I started my meds Friday, like a good patient. By Sunday, I was running to the bathroom just to run my hands under cold water to stop feeling the itch. By Monday? I had an eruption of blisters on both hands to the point that made them completely unusable for work. As each day went on, more blister clusters would show up. Then they started to go down my arms, on my torso, and the top of my thighs. I could only sleep if I had ice packs on my hands to numb the itch. My PCP added Hydroxyzine to the mix, but the blisters kept coming. Is not only were the meds not stopping the massive flare, but I can only guess at what the trigger was this time so I don’t actually know what to avoid.

I haven’t eaten any new foods. It has been warmer than usual here, so maybe it was the high humidity and heat of outside? I got some plants from a friend a few days before the flare started, but nothing I’ve not handled before. Was it the soil? Was it the canna lilies? Was it the mexican petunias? Was it the papyrus? Was it just the fact I was sweating? Was it the pennywort I was pulling up? Did it have nothing to do with the new plants? Was it stress from being busier than normal at work? Was it one of the soaps we just got in at work? I honestly don’t know for sure. I’ve assumed it has to do with the gardening at this point because it is something I can act on. I can wear fabric gardening gloves and just choose not to actively participate in gardening….as much as that’s a heavy blow to my soul.

But That’s Not All Folks!

All of that is incredibly frustrating. But that’s not the whole of the story either. Because while this is going on, I don’t feel sick. I’m not running a fever. I’m not vomiting. I’m not delirious. I’m not overly tired (except for now I’m on Benadryl instead of the hydroxyzine, so I’ve only got moments of functionality in between doses).

Despite that, I can’t wash my hair on my own because the pressure on my hands sets the itching and pain in the blisters off. Showering at all is….uncomfortable. It’s got to be cool water, and I can’t stay in there long but it also is hard to hold anything to scrub with. Even getting dressed isn’t something I can do easily because bra’s are terrible to try and put on with hands that aren’t functioning well.

And of course stress makes any mast cell flare worse, so you’re not supposed to stress about all these things while the mast cells are attacking your own system FOR NO GOOD REASON.

Okay…so…the reason is that I’ve got Ehlers-Danlos and it often comes with Mast Cell Activation Syndrome and that means that the mast cells get over ambitious after being triggered and start attacking healthy tissue because that’s how auto-immune disorders work. I know this. But I still don’t consider that a GOOD reason for this nonsense.

Add to this mix that it’s difficult to find a doctor that is easy to get an appointment with during a flare AND knows about mast cell diseases? I am lucky to have friends that are knowledgeable as well as doctors that are willing to listen to me when I suggest something. But they aren’t specialists with mast cell issues, so as amazing as they are, they’re shooting in the dark a bit as well. The last time I had a massive flare like this? I was sent to a dermatologist that was supposed to be the top of her game. She looked at me and told me it was poison ivy and that she could tell I don’t have mast cell issues by looking at it, then proceeded to insult the rest of my team and tell me I just wanted to be special and needed to accept it was just run of the mill poison ivy. It wasn’t poison ivy. Despite the fact I react to the most benign things…I don’t react to poison ivy, and wasn’t around it anyway. Despite the fact I had a steroid injection that should have helped a poison ivy rash go down…and it did nothing. Despite the fact none of the blisters were weeping or anything like a poison ivy rash. Which just adds to the mountain of stress as you’re just trying to find some relief and get back to a life.

You Are Not Your Productivity

And this last one, is the fight against my own mind. That because I don’t feel like I’m on death’s door…I should be more productive. I should be able to work. That falling asleep because of taking Benadryl is somehow a sign of weakness. That I’m letting everyone down by being in the middle of a flare and not knowing exactly what caused it and how to fix it immediately. Like I’m somehow a failure for this.

Yet, in a small moment of clarity, I recall a recent interaction. I met a wonderful woman at work that was wheelchair bound. She was telling me all the things she used to do before her failing health stripped it from her. I shared a bit of my own story and things I’ve lost. She looked at me with tears in her eyes, and asked if I ever feel like a terrible burden and useless. That if she couldn’t do things she loved and make gifts to bring smiles to people, what good was she anyway? That if she had to rely on her husband to do everything for her, wasn’t she just a burden that he’d be better off without? (Now, her husband was also shaking his head and giving her the stink eye during this, bless him. And you could feel the love from him)

I had told her, fully believing it, that she wasn’t worthless. She made my day. She still touched the lives of people, and that mattered. People she made things for in the past, I’m sure still look back and are touched. The fact that she touched so many lives is incredible. So just because she’s not doing the same things she used to, she was still a bright light that was needed in the world.

I’m not one to say that the universe has everything planned, but I think we needed each other. Because as I’m facing all of the frustration from my mast cells not being able to fully calm down from a tantrum, and feeling utterly useless…I remember this shining light of a woman. I still have to fight my mind, because it’s an ingrained thing that I’ve had beaten into my head. But it has helped.

But What About Solutions?

Well…I’m just now, over a week later, looking like I’m turning a corner with a shift in my medicines. I’ve also been in contact with a company that is run by an incredible couple called Dirty Unicorn about making a hand salve for me that may be better than the bar lotion I have currently. I’ve just ordered some soap from them because I love the scents they use.

I let my cat cuddle me and act like a fuzzy nurse. Just having him around to pet, feeling his weight against me, is soothing.

I talk to friends that have an understanding of what I’m going through. We talk about the problem, touch base, and then have a conversation unrelated to medical things.

I keep my primary care doctor informed of the progress or lack thereof as well as any changes I’ve done myself.

I have alarms set on my phone so I make sure to take my medicines on time and so they are apart enough to not interact with each other.

I put on meditations to help me rest. Even if the meds are making me sleep, they help my mind go to a better place while drifting off rather than focusing on the depression downward spiral.

I let my other half help me with tasks that I’d rather be able to do myself.

I try my best to be kind to myself, and reach out to friends that can give me a mental slap if I need it. Because this is stressful enough without my own mind making it worse.

I don’t respond to calls or texts unless I feel up to it, even if I can do speech to text. Because I wouldn’t ask anyone to stress themselves out and make their flare start back up, I won’t let anyone else do it to me.

And I just try to do whatever I can in the moment. Because there’s no way around it…the situation sucks. It’s horrible itchy, incredibly painful, and utterly miserable. I accept there’s nothing I can do to make the situation not suck. But that doesn’t mean I have to beat myself up over it at the same time.

I take the time to speech to text something like this just in case it reaches someone that needs to hear they’re not alone.

Also….I made some memes out of spite…because if you can’t make it better…make fun of your situation and spread the dark humor.

It’s very frustrating when there’s no easily discernable reason. We both acknowledged there’s a reason, because there’s always a reason. Just maybe, ones that weren’t quite understood or we didn’t have the technology to understand yet. But that didn’t change the fact that we just wanted to know the reason because that would mean we’d have something we could act on. We laughed about how it’s probably the most absurd reason that nobody ever realized. And I said…..

…Like A Purple Cow

Where is the purple cow? Doesn’t matter, it just exists.

Why is it a purple cow? No reason other than just because.

Have you seen the purple cow? No, but I know it’s there.

Why is it the fault of the purple cow? Reasons.

What does the purple cow want? Nobody really understands.

Sometimes, the cow was angry. What was it angry at? We weren’t quite sure, but we said it was when it caused pain. So when there’s stomach pain, joint pain, nerve pain, and all without an easily diagnosable reason?

It was because we were dealing with a very angry cow that was stomping around for no good reason.

Sometimes, the cow was hiding in plain sight. When you have something that seems like it’s an obvious issue with an obvious treatment. I once had a massive flare of what looked like poison ivy. Didn’t itch a whole lot, but that’s exactly what it looked like and it made sense. Took a steroid shot, and it got worse. Was given a high dosage steroid gel, and it got worse. Went to a dermatologist that shrugged it off at poison ivy and was convinced I was lying about the steroids because poison ivy would go away with steroids.

We never did figure it out, though we’ve assumed it to be MCAS related. But it was something that should have been very “normal” and “easy to treat”. Yet….it tormented me for over a month.

Purple cow

Sometimes the cow is a sneaky little thing. You’re having a good day. You’re getting things done. Enjoying life. Hanging out with friends. Working. Whatever you happen to be doing. When all of a sudden….

….without warning…

BAM! Debilitating symptoms! Whether it be a migraine or a joint going out of place. Gastroparesis causing you to vomit. Whatever the reason, it snuck up out of nowhere for seemingly no reason.

Purple cow

A symptom that you’ve dealt with forever and thought was completely normal only to find out that it’s actually a sign of having a rare disease?

Purple cow that’s been painting itself to look like a zebra this whole time.

I wrote a post a while back that included using lizard pictures sent to friends to describe the state of my mental health. Godzilla was the “I’m in immediate danger and am in legitimate danger” signal. Sometimes there was a trigger I can pick out. Other times?

That damned purple cow showed up in a Godzilla suit.

Having an over-active immune system that thinks it’s helping, but is really causing you significant issues? MCAS rejecting food that’s good for you? Lungs full of fluid because it’s trying to encapsulate the invaders? Nerves in pain because they’re trying to let you know there’s something wrong but won’t stop screaming?

It’s a cow trying really hard to be helpful, in all the wrong ways.

I even designed a cow for when people try and tell you that it’s spiritual reasons that you’re feeling poorly. I generally degrade it into “woo nonsense” when it’s unhelpful suggestions and tangents. But it can be things like having terrible dreams for no apparent reason?

Maybe it’s your meds, maybe it’s a cow in disguise as something magical.

But whatever is going on…..

Whether you’ve got a random flare of shingles or mono. You get the bad news of a diagnosis. You have strange complications that confuse your doctors.

It’s so easy for us to worry. Maybe I screwed up. Maybe I’m being divinely punished. Maybe I deserve it. Maybe I had it coming. *Maybe my doctor is bad. Maybe I didn’t try hard enough. Maybe I’m being a drama queen about it. Maybe I’m just making it up. Maybe I’m just weak.

Or maybe…just maybe…life is chaos and there’s not always a nice and neat answer for everything.

Maybe….

It’s just a purple cow.

IF you like these designs, you can find them on the RedBubble site through the art page of RedTailArts there.

*If you ever think that your doctor is the problem or you’re not being heard, please get a second opinion! You should always feel heard by your physician and we know that it can be a difficult thing to figure out whether it is a doctor or a body problem.