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.

For a bit of relevant backstory, I wasn’t diagnosed till I was in my mid 30’s. This meant I had quite a number of years thinking that a lot of really abnormal pains that I was experiencing were normal. I discussed this is more detail when I wrote about how it impacted my ability to interpret pain in a previous post, but this is about a slightly different, yet related, aspect.

When you have a syndrome that causes pain that’s uncommon for someone your age, along with uncharacteristic presentation? It can make it hard for doctors to even realize something is actually wrong in order to help you. I distinctly remember being in 4th grade and having issues with my hips rolling out and making it difficult in PE classes. But all of my concerns were brushed aside. The pediatrician, as far as he was concerned, saw nothing to suggest that my hips were having any significant issue. To be completely fair, here was a child that would rather draw, read books, and play music than do sports. When he did a quick exam of my hips, they weren’t out of place because they’d slip back in on their own. He wouldn’t have felt them partially dislocated. All he had to go on, was my word that I was in pain, and that wasn’t enough for him.

While I can point out my disappointment at how I was treated, the fact remains that it caused me to think that I was experiencing a disproportionate response to every day events that normal people feel without issue. I accepted this as truth, and the way I handled it, was to push past the pain. It became a part of my personality. I’d get light headed when I stood up to fast, but I forced myself to work around it. When I heard some runners talk about when they’d hid an almost trance state? I assumed that’s what I experienced so I continued to push past it. In my mind, if they could, I could too.

I spent an awful lot of energy on this. Looking back, probably an unhealthy amount of energy on pretending the pain didn’t bother me. But I wanted to prove that I wasn’t as weak as it was believed I was. I couldn’t run fast because my breathing would shut down. I didn’t have a lot of stamina because I’d get light headed. I couldn’t do pull-ups or push-ups to save my life and I didn’t realize at the time it was my shoulders were subluxing. Even tasks like volleyball would jar things in my joints. I didn’t know it was because my body wasn’t built right, so it was simply incentive to push harder.

Fast forward to 2016, when I suffered an injury from a rolled ankle that I couldn’t push past like I was used to. The more I pushed, the worse it got. After 9 months in a walking boot, I was sent to a Podiatrist that specialized in Ehlers-Danlos. And after a relatively brief assessment, told me if I kept pushing, I was going to walk myself into a wheelchair.

The Fear of Loss

It’s an odd thing to be faced with. Degenerative disorders that will eventually steal bits of your normal function. It’s a horrible looming threat that will creep into everything you do if you’re not careful. I know I’ve found myself acutely aware of it every time I’m able to go out and do things. I wonder if it’s the last time I’ll be able to fully enjoy it. Sometimes it’s a slow degradation, while other times it’s a sudden injury that permanently tips the scales.

This gets further muddied when healing comes into play. Many of us feel a pressure to heal as fast as possible. Much of it is stemmed in that fear of missing out. It can be a feeling that’s quite consuming, and understandably so. Granted, there’s a ton of adaptable tools and mobility aids. Unfortunately, many still suffer from a stigma from utilizing those…even if some of that is fully self-imposed.

Speaking from personal experience though? There’s a bit of grief that will follow such a shift, even if it is simply a different way to enjoy a hobby. And being that it’s human nature to avoid pain, and therefor grief? It only makes sense that we try to avoid such dramatic shifts in our lives. Even if it’s that avoidance that can further create problems. There’s many things that while healing from surgery, I was stubborn and found ways to still perform certain tasks. While other things, I’ve not bothered. I once shot competitive archery, and haven’t been able to bring myself to shoot with a crossbow. It’s a completely self imposed limit that’s pure pride. So, I get that there are some times where it’s easier on the mind to let something go than force it.

Pick and choose your battles, just as long as you are aware that you’re doing so. It’s not going down without a fight if you simply choose to focus your energy on one aspect of the war that takes priority. It’s okay and even expected to experience grief at a loss of a hobby. It’s okay if that grief comes up if you’ve just had to shift how you perform that hobby. Let yourself feel however you feel about it, and when the wave of it crests and fades once again? THEN decide if and how you will move forward about it. Loss will happen with EDS. As with any degenerative disorder. It becomes more about mitigation and the proactive decisions for the long game…at least as much as one can.

Diagnose Aggressively, Treat Gently

When I asked my surgeon if there was anything he feels strongly about that I should include, it was the concept of diagnosing problems aggressively, but treating them gently. Ideally, because of the problematic collagen that is at the root of all different types of EDS, we can have minor issues that can escalate very quickly into quite severe complications. We should be very active about getting our bodies checked out for common complications. I know from past experience in Pittsburgh, PA…a mix of insurance and medical professionals being unqualified in rare disease treatment can make this extraordinarily difficult in an official sense. I’m extraordinarily blessed to have several highly skilled members of my team that I can contact and get a speedy response from. However, that wasn’t always the case and I learned some skills to get around this as best as possible. Those skills have been further developed ever since my official EDS diagnosis.

I wrote about the diagnostic aspect in a previous post, but the general idea is that one can direct a lot of that energy to research. There’s a lot of nuanced information, and for the sake of not wanting to rewrite the article here, I suggest going over to that link and taking a look at the original. The only thing I currently have to add to the past post comes from my new Optometrist. He stated the most important thing is that we monitor closely for any problems. The faster we catch a problem, the less likely it will swiftly progress to something irreversible. It’s better to be overly cautious and never see a problem, than it is to completely ignore the risk factors. With EDS patients, by the time we consider something “bad enough”, it can often be beyond easier and less invasive treatments.

The other half of this, the idea of treating gently, is something that needs a bit more attention. Especially considering what I wrote about the grief aspect that comes with the fear of loss. How do we find the balance between putting effort into healing while not giving into the negative motivations lurking in our minds?

My personal suggestion, is to put effort into switching your perspective. If you utilize your ability to research as an energy sync, take some of that to look up the expected heal time for the average person. For example, someone without EDS, still is expected to take 6 months to a year for a tendon graft to fully take. If it will take that long for a normal person, it should be obvious that it will take a minimum of that time for us…if not longer!

Instead of trying to perform normal tasks ahead of schedule, turn your focus into thinking about resting as active treatment. You’re not sitting there doing nothing, you’re lying in bed with your limb elevated to directly impact blood flow to the area and reduce inflammation. You’re not being lazy and a burden, you’re intentionally making choices to give body the chance to do the work it needs to. I’ve even had times where I’ve made a conscious effort to see it as putting my body in time out instead of letting my down time be a punishment for myself.

Even my physical therapist, who is quite skilled with EDS folks, takes things at a horribly slow and gentle pace. She has often discussed with me the need to treat patients such as myself with great care. To treat us with awareness that, no matter how much we don’t want to admit it, our bodies are a bit fragile. Exercises that will never create sore muscles if done right may mean that progress is painstakingly slow. However, it also means that we’re not reducing our joint stability and risking further injury when our muscles get sore and tired from overexertion.

It’s a shifting of one’s mindset from using energy to push past pain and, instead, using it to find work arounds because of the pain. While we’re used to forging ahead on the shortest path ahead of us, taking the long way around can bring us to a more complete healing with an improved success rate.

My Personal Success Story

I’m not going to tell you that if you just have hope, EDS can get better and all your problems can be reversed with a positive outlook. However, all that effort I mentioned earlier? That I put into trying to push past pain? I put into resting when I was directed to.

Looking back, I honestly can’t even tell you why exactly I decided to listen to my surgeon at the time. It’s never been in my nature to rest properly and I was ALWAYS disobeying orders to let my body rest. Maybe it was the sincerity in his voice when he told me I would walk myself into a wheelchair. Maybe it was when one of my best friends said I owe it to myself to do everything I could to walk again. Maybe it was a mix of a lot of things. But whatever the reason, I actively made the choices to do exactly what I was supposed to do, and not push beyond that.

This was exceptionally challenging when I had unique complications that prevented my healing and required further treatment. My leg lost a considerable amount of muscle mass. There were times where I wondered if I would never walk properly again. There were times I wanted to break the rules and just walk on it anyway, pushing past the pain, trying to force my body to listen to me. I’ll be honest and say there were times I felt it was hopeless. Thankfully, in those times, I had a lovely support network and a surgeon that was actively invested in his patients. But what’s most important, was that I was still actively making choices to try and give myself the best chance for healing in the long run.

It was incredibly difficult. I won’t pretend otherwise to make it more enticing.

But as of right now? I’m walking up to 7 miles without rolling either of my ankles even once. The pain is greatly reduced. I go up and down stairs without a problem. I’m getting back everything I had to put on hold while healing. The joy that brings? That I could walk on the beach with my friends, in the tide as well as the soft sand, and laugh? That I can go outside and work in the garden without needing to wait for someone to make sure I am safe? It is well worth all of the difficult moments.

So however you need to work it in your mind to make it easier for your brain to digest. Treat yourself gently. Don’t be drive by fear that you end up pressing yourself into creating more problems. We’re not Clydesdales that are meant for heavy work…we’re zebras. A bit wonky, a bit goofy, and sometimes even a pain in the ass. But we’re also incredibly resilient in our own way.

To quote one of my friends J. Coursey Willis in his song Inside Me Now (link to full lyrics and music):

And I’m telling you to please keep moving on
‘Cause I’m stitching up all that I’ve got wrong
And I’ll find myself someday …

I’m not giving up just yet
But would you take my hand?
Show me where this long road ends
And I just hope you’ll understand
That I’m doing the best I can
With all of these untended partial threads

As with a post I’ve done previously, I probably don’t have it in me to edit for eloquence as much as I would prefer. Do not consider my statements legal or medical recommendations of action for your particular situation. Anything I talk about, is my own experience and I urge you to do what you feel necessary to stay safe and healthy.

One last note before we begin, while the #MeToo movement was generally centered around women that told their stories, I want to stress that sexual assault does not have a preference as to who will be a predator or a victim. Absolutely nobody is, by default, incapable of being in either category simply by being a particular gender, sexual orientation, or life circumstance. A straight cis man can be a victim, despite that the majority of predators fall into that category. A lesbian AMAB woman can be a predator, despite that they’re more likely to be victims. There is a dangerous undercurrent in many group conversations that has been suggesting that certain groups of people should ALWAYS be believed over another. I want to make it very clear that I don’t feel there is, nor should be, any group of person that should be considered protected above others…despite that it may not be a very popular opinion on things.

I’m aware this is not a comfortable statement. But we must not face trauma with our own fears of not being believed. Predators come in all genders, in all sexual orientations, and all levels of physical ability, ect… There’s even victims that instead of healing their own trauma, turn into predators themselves. If your situation doesn’t fit the typical “strong cis male forces himself on weaker unsuspecting female” story that we’ve come accustomed to…this had no impact on the validity of your experience.

After a lot of work, both with people that love me and a therapist that has an amazing skill with trauma, I came to truly accept some things. These are things that I would have told, and HAVE told friends that have been victims. But…when it happens to you, it’s harder to believe it yourself. I’m sure I’ll repeat it later here and that’s only because I want to be very upfront; none of it was easy, but all of it was worth it. Having ones that I trust remind me of these things, gave me permission to believe it too. Dear reader, you may, or may not, know me, but sometimes a stranger’s permission to accept can be a great help. So…for anyone that needs to hear it….

It is not your fault.

There’s a lot of blame that happens in our culture when a victim comes forward. I don’t care what you were wearing, or if you started it, or if they misunderstood something as a pass, or if you were drunk, or if you were drugged. It’s not your fault. The fault falls 100% to that of the person that assaulted you. Unless you were literally asking someone to do this to you as a BDSM scene and you negotiated a safe word (which is a completely different circumstance) then it’s not your fault. I understand it isn’t easy. I was on some high pain meds after a surgery, and yet I still wasted time trying to talk myself into ways that that I could have been responsible. Think about that for a moment. Drugged up person, less than 48 hours after significant surgery to my ankle, was trying to figure out how it could have been my fault. The person that needed someone to give them meds and was so discombobulated they needed physical assistance in going to the bathroom. Was trying figure out how it could possibly be their fault.

Now that some time has passed, I understand why I tried to take that approach. It was someone I considered a friend. It was exceptionally difficult to think this individual would do this without a reasonable explanation, because friends don’t do things like that. It was easier to lie to myself about the truth of the situation by trying to take responsibility despite being drugged…than it was to accept that this person took full advantage of knowing I was greatly impaired on a medicine that would make memory incomplete.

This is something that is hard to accept for just about anyone. Not only do we have to come to the realization that the friendship was a lie as a whole, but it often creates feelings of suspicions on other topics. If one could make such a grave error in judgement in this situation, they may start to question if any of their friendships are real. And to come out of the darkness the situation brings, you’ve got to face those concerns (preferably with a good therapist as a neutral party rather than a friend that, by the nature of trauma, you may question the motives of later). It can slowly spiral into everything that’s beautiful and healthy. And I know that it can be painful and scary and terrifying, but you are worth the effort to give that gift to yourself. To be able to truly accept the reality of it not being your fault.

I certainly wasn’t excited about that particular part of the journey toward recovery, but, it’s also not a part of my nature to even entertain a lie to myself for very long. A terrible truth is more useful than a pleasant lie in my world. Facing temporary discomfort, no matter how intense, is better in the long term. Try and remember that on your journey as well. Whether your skirt was short, you got in the car, you asked them to help when vulnerable, you were drunk, you were too scared to say no. It. Isn’t. Your. Fault. If the person that assaulted you wasn’t a predator…would what you have done mattered as much?

It can happen to anyone

You are not weak or dumb or asking for it more than anyone else that it’s happened to. All you can do is protect yourself the best ways you know how. Just because sometimes it can still happen, it says more about the one that assaulted you than it does you. I know that, again, it’s not easy. We want to believe that there’s always a way to prevent it. That if we just do the right thing, that will keep us safe. It’s incredibly jarring to have to face that we ALL have times when we’re vulnerable. We can’t be hyper-vigilant 100% of the time and still lead normal lives. Or healthy ones for that matter. Though, our minds may try to tell us that this needs to be our new normal as it may become hyperfocused on trying to prevent this from ever occuring again.

This is a natural part of trauma for many people. Our brains try to take what happened and create a new set of rules in order to prevent it from ever happening again. So many people come up with tips and tricks like walking with keys between your fingers in a fist or a nail polish to dip in your bar drink to detect an added drug. But all the precautions in the world, doesn’t mean we’ll be perfectly safe. If military personnel can be sexually assaulted despite all their training and knowledge, then it can certainly happen to you too. While that can be fear inducing, try to use it to reflect back on how it’s not your fault. If it can happen to some of the best, then you are not less or flawed or broken or weak because it happened to you. As previously stated, it says more about the predator than it does about you.

Part of the reason I sought help for myself is because I know I couldn’t accept that truth on my own. But with another surgery coming up shortly after it happened, I couldn’t afford a scared and wounded heart going into it. I was not going to give myself the best chance of healing if I was still consumed by the trauma. Considering refusing pain meds so you stay fully aware, is not good for your healing. Considering trying to force your partner to stay conscious for 72 hours so you don’t have to even think about the chance it could happen with anyone, is not healthy. I refused to let it poison my chances of healing. Taking healthy precautions is great and knowing it could happen to anyone shouldn’t prevent you from doing so. But the take away here should be not to beat yourself up if the worst does occur.

It’s okay to feel however you feel about it

I know as much as we can understand things from a logical point of view, it doesn’t mean that emotions will be kind enough to follow suit. They’re going to do whatever they’re going to do. Anger, guilt, betrayal, fear, disgust, grief, hatred…no matter what feeling it is…it’s okay and normal. The important thing is to just acknowledge them, embrace them for what they are, and refrain from acting solely on just those emotions. Don’t focus on whether the emotions are okay to have. Sexual assault is a trauma, and as a dear friend reminded me, there’s no such thing as a minor sexual assault trauma, and trauma brings a mix of volatile emotions. So whatever your feeling is valid.

It is also valid to grieve the loss of what you thought was friendship (or whatever relationship it may have been) and still feel like you never want to see the person again. You can miss the person that assaulted you, the person you thought you knew. Just never allow them the chance to come back and do it again because of that feeling of loss. There is nothing wrong with you if you miss the relationship you thought was real. Those memories are valid. There’s nothing wrong with you if you don’t need to grieve right now too. You don’t have to have the same response as someone seeks to be valid. Contrary to what some will tell you, there’s no right or wrong way to feel after a trauma. The only right or wrong is action taken solely because of the emotions that come about.

Reach out to loved ones, but only for your sake, not for spite

Nobody should have to handle such a burden by themselves. So reach out to those that you trust and you know love you. Don’t do it because you just want to ruin the life of the one that assaulted you. Do it because you are a person that deserves love and support when dealing with a trauma.

When I reached out to the first few loved ones, it wasn’t to convince people to take sides or ask them to help me plot revenge. It certainly wasn’t a cry for attention so I could whinge about poor little me. My whole intention was that I refused to let someone not worth my attention have an impact on my life without taking healthy action about it. I was going to talk to those that I trusted the most to prove to myself that I could do it. Whatever the people I told did, was up to them. I owed it to myself to reach out, despite any fear of rejection.

Some of them were livid, some were full of sympathy, and some simply let me talk, but the important part is that I have been blessed so far that the vast majority have been full of love and support. And really…that was all I wanted at the time. A reminder that just because one person played a good game of pretending to be a decent human being, didn’t negate the fact that others were honest in their relationship. Prove that to yourself too. It isn’t about them, it is about you giving yourself the best chance at overcoming it in healthy ways. Confirm the bonds that you love and trust. Don’t let the trauma ooze onto the good things that you deserve to have in your life.

Predators will lie about what happened. It’s about them…not about you

As if the assault wasn’t enough, it’s not uncommon for someone that assaults you to lie to others about it in an attempt to invalidate your experience and your story. If they paint themselves as a victim, their hope is that the lie is believable enough for others to ignore your truth. Document everything as much as you can. Write down what you remembered happening as clear as you can. Screen shot texts. Think of any outside person that can disprove the lies being said. For my personal story, having someone else that was close by and the only one that administered my aforementioned pain meds with a surgeon that could speak to my state and past history with similar surgeries?

And though it may be tempting in the face of someone accusing you of something you know to be untrue…DO NOT LIE IN RETALIATION. Do not fabricate part of your story in an attempt to quiet the lies. Do not attack back in spite. Do not encourage, or allow without counter, others to lie about their involvement or awareness of your circumstances. There’s also a great benefit to living one’s life in the pursuit of truth. There’s no lies to uncover. No conspiracy to unravel. I know all too well how it feels when you hear lies about the event. Lies about who you are. But no matter how that feels…stick to truths.

No matter the reason they did it, no matter the reason they’re lying about the truth of reality. They are doing it because they don’t want others to know they screwed up. Their victim just happens to be the easiest whipping post because they’re typically scared and wounded from digesting what happened to them days, weeks, even months later. Not because the victim is weak, but because that is how trauma impacts the brain. I know it can be scary, facing a mess like that. But be honest to yourself, and don’t let the fact that they’re trying to get everyone’s who’s listening. Try to have faith that those worth your presence will not fall prey. And if they do? You’ve just outgrown them.

Never let your aggressor convince you that you need to talk one on one to work things out. Or that you poor thing, you’re so confused, if only you could have talked it out. Or that you’re the one throwing the friendship away. Or that you’re ruining their relationship with people. Or feel obligated to answer their questions. Hell…don’t feel obligated to even answer interrogatory questions from supposed loved ones if you aren’t okay with it right now. Don’t flay yourself in order to prove anything unless it is your choosing. Listen to those you trust if they’re worried about your well being as you heal during this time. But you owe your story to nobody.

Healing will take time and can show up in very unexpected ways

As I’m writing this particular section, it has been months since the incident. I went through two different rounds of some pretty heavy therapy. In my mind, I thought I had gotten over it and recovered because it wasn’t impacting my life………..that I noticed.

Unfortunately, part of the problem was I wasn’t noticing. I was blissfully unaware until very recently to be perfectly honest. Someone I have been quite close to for about 5 years now, asked if they could spend some time overnight with me. I was in a complete panic about it. You’d think that would be panic over Covid exposure? Nope. I don’t have any concerns there because he pretty much stays away from people too. No no. I was completely obsessed with things that were kinda nonsense. Want an idea? Take a took over at this previous post for an example of what my sentient ball of bacon jelly that calls itself a brain decides to go a bit crazy.

It took just venting to a trusted friend before I realized…the last time I fell asleep next to someone that wasn’t my primary partner…was the person that was supposed to be keeping me safe while recovering from surgery. Months later, my sentient bacon jelly still felt a need to keep me safe from anyone that wasn’t my primary partner. Despite the fact I’ve been close to this other person for five years and he’s one of the ones that helped me recover in the first place. Despite the fact that he’s seen me at some of my worst and still supports me in ways I don’t even always have words for. I was still experiencing remnants of trauma over the idea of falling asleep with them even close by.

But you know what? That’s okay. While it does bring up quite a bit of rage that I thought had completely cooled down towards my aggressor, I’m more furious at how trauma impacts things rather than upset over “Oh woe is me, poor me and my situation.” Because as soon as I realized it? It gave me the chance to work with it. I’ve spent the day messaging him about where my head is at, and it allowed a healthy conversation about how to move forward in safe ways.

Is it a shitty set of circumstances that lead to issues that can be intimidating to have conversations about? Yep. But having those conversations was the only way to face it. Refusing to let it get in between me and those I’ve gotten to share wonderful bonds with. Even though it was unexpected and months after the fact. Don’t let the trauma of the event dictate your life. You’re not failing if it comes back. You haven’t failed if you look back and realize that some of your new behaviors are trauma based. You haven’t failed if you have a flashback even years later. You’re only failing if you give in and stay there.

One of the most important things, is to get the professional help you need

Every location is different. Where I’m at, we have a FANTASTIC advocacy group that is very easy to talk to. Many areas have women’s shelters that will have a list of recommended therapists that handle sexual trauma specifically. There are also a number of lawyers that will provide a free consult to help you understand the proper measures to take in order to protect yourself and your rights as a victim. Some victims feel comfortable going to the police, while others do not. Though I encourage speaking up, I also have to acknowledge that everyone’s circumstances is different.

The first thing I did was I discussed my concerns with my surgeon during one of the post-op appointments to get an unbiased take on what the chances were it was a freak medication reaction. Making sure that there was no chance that my fragmented memory was, in fact, unprecedented hallucinations. When that was shot out of the water pretty concretely? I didn’t see any other option but to go to therapy. But that is my path and how I chose to walk down it.

You know your situation better than anyone else. Whether you quietly find a therapist or you go for the metaphorical throat of those that have wronged you. What matters above all else, is that you’re safe and taking steps to protect your own well being.

The faster one can take a trauma and process it in healthy ways, the faster we can also move on and live happy lives despite it. It has come up with several different therapists now. The longer you wait for help, the longer it will take to recover. It’s never too late, but if you get to it sooner, you remove more opportunities for it to ooze over more positive things in you life. So please…get professional help. Despite the stigma about it. Despite what those around you may think. Get help from someone trained in trauma specific therapy.

Because you are worth it.

You deserve to be happy.

You are not the trauma that happened to you.

And those that insist on using something out of your control to shame you or make you feel less worthy of having a life worth living…leave them behind with their choices. Because you deserve those that will support you in trying to make your life better.

I’m blessed to have a support network. And I’ve got a stubborn bitch of a personality. I may not always know the right thing to do or the best way to handle it. But I do know it’s always better to keep putting one foot in front of the other. Because I’m worth it. I’m worth all that effort and pain and fear and heartbreak it took to recover this far.

And if I’m worth it?

So are you, you magical fucking zebra, you.

So What ARE Smart Crutches Anyway?

Smart Crutches are forearm crutches that are designed to better distribute your weight and therefore allow you to use them to get around for longer distances without pain or discomfort. For us Zebras with Ehlers-Danlos, it means it also means less subluxations and dislocations than regular crutches or knee scooters.

In their FAQ’s, they have an infographic that talks about specific needs for EDS patients such as putting more weight along the forearm rather than the shoulders, elbows, hands, and wrists. They were also designed to help us maintain a proper posture while using them rather than leaning over, again putting less stress on our joints. To help them last as long as possible, they also have replacement parts so you don’t have to buy a whole new set when one part breaks or wears out.

Features Listed On The Website:

• Ergonomically designed grips provide natural wrist angle and even load across palm.
• 15° to 90° forearm platform settings to meet personal comfort and mobility requirements.
• Locking spline allows for secure rotational angle settings.
• 3-point forearm length settings for additional customization.
• 10-position push-pin height adjustment (Range between sizes: 4′ 8″ to 6′ 7″).
• Hourglass-shaped foot design maximizes surface contact.
• Shock absorption built into the design of the specialized ferrule and cuff memory foam.

Benefits Listed On Their Website:

• Transfer of weight to forearm results in less fatigue and injury prevention.
• Less pressure on hands reduces pain, discomfort or blistering.
• Mitigates the potential of pinched or damaged nerves.
• Improves posture and gait resulting in less pain or fatigue.
• Allows freedom of hands while still providing support.
• Easier to navigate while ascending or descending stairs.
• 10 fashion colors to suit personal style.

My Experience Ordering From Them

I’m not often impressed by a company. Normally, it’s either smooth running or I’m disappointed. Impressed? Rarely. This company however?!

So first off, they have a really easy to understand sizing chart. There’s a lot of adjusting that can happen with them, so there’s not a need to choose between so many sizes that it’s intimidating.

They also have different feet to purchase for them to best suit your needs. Ones for grip in the ice, non-slip, and even long distance and hiking.

But I had questions that couldn’t be answered about what feet I should get specifically because of needing them to hopefully go long distance if needed on uneven ground WHILE having EDS as a complication. I tried looking at reviews on the site and videos on YouTube, but they weren’t specific enough for me to be confident in my order…so I had the goad of emailing customer service. To my surprise, they had a text option, so I figured I would give that a shot. I was honestly expecting some kind of automated service to go through. It’s been a while, but I sent something along the lines of “Hi, I was interested in purchasing a pair of SmartCrutches, but I have some questions about using different feet because of having EDS.”

Imagine my shock when I get a text from a different number from one of their employees from their personal cell! Not only did someone get back to me, this gentleman ALSO HAD EDS!!! They specifically got one of their EDS people to get back to me because I mentioned it in my text! He asked all sorts of questions about which joints were bad, how much I can lift, how often my shoulders dislocated, my confidence in my shoulders. We were able to discuss it with an intimate understanding that I didn’t have to try and explain to someone without it that was only trying to make sales. He was very honest that either of the spring loaded ones can take more strength and muscle control while the Tornado ones had a much larger base as well as his personal experience with them.

I ended up getting both the TornadoAIR and the Tripod ones. I figured I could use the Tornado ones to start, and Tripod ones for when I want to try and do a nature trail walk. They also had a sale running at the time, so it ended up being cheaper if I got them both at the same time as the crutches rather than at a later date.

But Do They Work?

I ABSOLUTELY LOVE THEM! ***

That being said, I want to be very clear about my experience with them because I wasn’t so excited the first week after they arrived.

They do not feel like normal crutches at all when I first tried them. The stock feet have a bending point to allow for a lot of smooth movement compensation. But when you go from very rigid support to something that wiggles? It was a bit unsettling to put my full weight on them.

I also had trouble with how the instructions said to set the height. The instructions themselves were easy to follow, but it really didn’t feel right. I tried moving the height and switching between the 3 different angles for the arm braces. I honestly went into tears several times because I had initially thought I made the biggest mistake purchase ever. I had just two weeks till my next surgery and I couldn’t seem to use the crutches I just ordered.

Thankfully, I’ve got a few people that have always been hugely supportive. They convinced me that instead of jumping into trying to put my full weight only the crutches, why don’t I just use them as kind of a cane. See if I can get my body to slowly adjust.

My other half also set the crutches back to where the instructions said to put the height to and insist I learn to at least use them as suggested first. I was quite grumpy about it…but it was really the best approach to take.

We’d go for short walks, just under a mile just using them as very light support. They held maybe 50% of my weight at most during this time. By the end of a week, I was finding myself a lot more confident on them and would do the occasional long hop just because it was kinda fun.

The second week, I was able to start putting my full weight on them for part of the distance we were walking. Some of it was simply getting used to how I had to shift a bit of my center of balance. Some of it was a bit of muscle training. Despite my arms being fairly muscled, I was asking them to do things they weren’t used to.

They became my best friends on days it was too painful to put weight down on my foot. I could go up the ramp leading to my front door. I could slowly go up and down stairs at work. I could move in smaller spaces than what a knee scooter allowed. They took up less storage space. The only downside was that OMG they were EXHAUSTING! Part of it, I’m sure was the fact that I’ve not been hugely mobile for several years and my whole body was protesting the fact I was pushing it.

So I still had to plan for only taking short trips on them, but they have been a major game changer. I’ve not dislocated my shoulder on them. The nerves in my arms never got angry from being pinched. My elbows and wrists didn’t dislocate either. Sometimes my hands would get tired, but nowhere near the speed at which they’d protest using a walker or regular crutches.

I don’t need them nearly as often as of late. However, just the other day I subluxed my knee and I can’t tell you how happy I am that I had these available. It reminded me just how much they gave back to me. So today, I grabbed one of my dearest friend and convinced him to take a handful of impromptu pictures to show that yes…a zebra can absolutely use them and put their full weight on them as long as they’ve got some upper arm strength.

They’re not a simple fix, so just don’t go into it thinking that you can pick them up and run marathons straight out of the box. They’re incredible, but they’ve still got a learning curve. But I absolutely recommend getting a pair for us EDS folks or anyone that is going to need long term crutches. Their representative was also quite accurate when he told me the spring loaded ones are harder on the shoulders. So if you’re not confident in your shoulders, stick with the Tornado or stock feet, at least to start out.

***I am in no way sponsored by the folks at SmartCrutchUSA or have been given any compensation for my positive statements. This is simply an honest review of the product and how it’s changed my life.