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.

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.

When I would ask these questions, I would often get answers that circled around how forgiveness is about being the bigger person. This, to me, always seemed a way to be passively prideful and arrogant about one’s ability to be above others who “are so lowly they allow themselves to be angry”. In short, a way of victim blaming those who are angry about abuses they’ve suffered. Or how it’s about healing the self, which, if taken in my previously understood context…I didn’t understand how forgiving others had anything to do with healing myself. It always sounded like moral high ground nonsense to me. A continued way to lord over people how enlightened you are more than anything dealing with truly healing.

This concept of forgiveness, always felt dangerous to me. Like letting a wound close on the surface while ignoring what is festering beneath it. Or trying to accept that deep cuts are just something that should be as serious as a papercut. Gently wash and let it close. It’ll all be fiiiiiiiiine. Even the very concept talking to an abuse victim about forgiveness felt blasphemous.

I have suffered a very deep betrayal recently, that I don’t feel a need to discuss in detail, simply to illustrate why this topic has come up in depth recently. And someone I care for, had suggested that I work on the forgiveness of this person, to be able to honestly wish the best for them. And I struggled very much with this. Because I can’t. Nor do I want to. I have no desire to wish them well or happiness or anything of the like. Was I a bad person? Was this something I needed to work on?

It was this specific that I brought to my therapist, that I went back to seeing because of this particular trauma. While I had my own strongly held beliefs on it (which I will go into), I was going to her to help heal myself. If I brought this to her, and she could explain this to me in a way I could maybe finally understand, I was absolutely willing to put the work into changing my world view.

To start, she told me a story about a woman who’s son was shot and killed by another teenager. The woman, visited this boy in prison, chose to buy him things he needed, and care for him. Even invited him to live with her when his time was up. He asked her why she did these things, for the guy that took her son from her. Her response was about enough hate and pain being in the world, she wanted to bring healing to someone that actually needed it.

As I sat there listening, I was torn between two feelings. One, was that the ability for someone to make a change from a grave mistake and to be seen as a person was a beautiful gift. The other, was this kind of thing was exactly the kind of thing I had a problem with, expecting other victims to do this kind of thing. In the spirit of being honest in therapy, I expressed this, and I was shocked to hear that it was for that exact reason is why she shared that story. Even more so to hear that my therapist, the one I expected to explain why this sacrificial idea of forgiveness was something worth striving for…said there’s no way she could do such a thing.

The rest of the discussion, we went into different types of forgiveness. How she saw my personal approach to a lot of my trauma as reflecting of forgiveness where I had never seen it. Her experiences with forgiveness. How forgiveness is just a word that means nothing on its own. What it means to heal one’s self after trauma. The validity of emotions. It was a really fantastic experience that I found myself feeling a sense of great relief after. It’s what brings me to why I’m writing this.

So often, we’ve been hurt. Family members, doctors, lovers, bosses, strangers, partners, law enforcement…… And we’ve been hurt in so many ways. Lies, manipulations, sexual assault, gaslighting, physical abuse, murder, racism…. And then we’re told by society that we should be the bigger person and show love in spite of all of these grave offenses.

I don’t prescribe to that. For me, forgiveness was reserved for innocent mistakes that were so minor and/or understandable that they could be ignored in the future of one’s relationship. You forgot to pick up bandages on your way here like I asked, and I really needed them. Okay, not the end of the world, totally forgivable. Mistakes happen. Cause me trauma? Whether intentionally or because they’ve got their own trauma they’ve never taken care of? I’ve never felt a need to extend that kindness. I still don’t. I don’t have any inner need to wish them any kind of joy or happiness. I don’t care. They fall in a “might as well be dead” category. Not because I’m spiteful and full of rage, but because I honestly don’t care about their existence anymore. I grieve the loss of a family member, or friend, or whatever the relationship was to me, and then “snip snip” they’re let go and carry as much emotion as any stranger I’d see in passing. I have two people that were born into the same family, that will never be a sister to me anymore. They’re strangers. And I mean that with all the seriousness I possess. They could tell me that they’ve gone to therapy and have a happy relationship and turned their life around, and while I won’t celebrate the change, I’m not going to be bitter they’ve decided to be a better person. I just care as much as if some stranger in the grocery store told me the same. Uh huh…cool…good for you I guess? Go have your happy life, just do it away from me. We will never have a relationship, even if they take care of their own shit. That fact is absolutely okay with me. My grieving was done years ago.

The other half of this process, was to understand that they are still a person. They are a product of their growing up, their genes, their actions, and the consequences of those actions, and experiences out of their control. This is no way is an approval or an acceptance for what they’ve done. It is merely a logical acceptance of humans are terrible animals with the potential to cause terrible pain and horror for a variety of reasons that brought them to that point. It doesn’t cause an empathizing with them. Rather, it allows me to no longer agonize over the “Why did they do this?” question. Because if I can acknowledge that the reason someone I thought was a friend was just in reality, a toxic person that made poor life choices because they’re simply broken and currently incapable of being otherwise…the details no longer matter to me. It also makes it an easier thing to release them from my life. They’re just a broken person, but they’re not my responsibility. If I hold myself responsible for my own actions, I can refuse others access to my life if they refuse to do so. So when my recent trauma happened, and the person first insisted on talking to me to “work things out”, I was already at the point of detachment. Nothing they could say would make it okay, or change the trauma. They did an unforgivable thing in my eyes, so, there’s no reason to give them the courtesy of my time and energy anymore. They were just a broken person, that made bad choices, made excuses for their bad choices, and I excused myself from being any further part of that. Especially when I had spent so much time on therapy on moving past it…on me and removing the control that trauma had on my state of being.

To me, this act was also something I didn’t think of as forgiveness. This was self preservation. While I’m sure many will disagree, it was explained that my way of approaching things was actually a type of forgiveness. Yes, what I reserved for minor transgressions was a form of forgiveness. But healing to the point where the emotions of the trauma can be released so they’re no longer causing you suffering? That’s the same spirit of forgiveness, even though it doesn’t have many characteristics of the other. If the emotions are no longer hurting, and you’re able to heal….then why try to expose yourself to further trauma for the sake of some imagined moral high ground? What can be gained from that? Isn’t it important enough that the cycle of trauma is broken? It’s a forgiveness of the circumstance rather than the individual.

When we spoke about it in that context, a part of me celebrated that I was being told that it’s not the mark of a terrible person to refuse to offer forgiveness to another. Whether they ask for it or not. Whether they make an effort for change or not. It’s okay to have your own limits as to what you can handle for yourself. It’s okay for someone to be able to go to the killer of their son and offer them forgiveness, but it’s just as okay for another mother to never hold forgiveness for the same kind of person. Neither one is better, as long as whatever they do allows them to heal for themselves.

If going to your abuser and offering them love and kindness they probably need to heal helps you release your own pain and suffering, that is an extraordinary gift and go for it. If you choose to cut off your abuser, mourn the loss of who they are to you, and learn to move forward and find new joys? That is an extraordinary gift that you’re giving to yourself. One is not better or bigger than the other. And if that’s hard to digest…what has more meaning? A crude handmade gift because the person has very limited finances or the gift that was bought with love and consideration? Or maybe, just maybe, they’re both equal of meaning because each is doing what they can with what they have.

In our lives, we have and will continue to have so many experiences in which we will be hurt or will hurt others. Some of them, we will be able to apologize and/or forgive. Some of them, we won’t be given the opportunity no matter how desperately we wish for it. Some of them, we will be unable to out of conscious choice. The important thing, as far as I’m concerned, is that we move forward with awareness and compassion. Whether this compassion needs to be directed to only the victim or the aggressor, or to be shared with both…I’m not about to tell anyone what they need to do or feel. Life is too complex for the answer to be simple as our society would have us believe.

I do believe that it has enriched my life to be able to see those that have visited trauma upon me, as people. Not as people doing their best, or victims of circumstance, or as monster…simply as people. I am comfortable in the fact that is where my compassion for those people ends. I’m also okay with the fact that some see my take on things as encouraging negativity or some such thing. That’s their cross to bare, not mine. I’m content to focus my energy on healing my own trauma so it releases any emotions that aren’t my responsibility to carry. I’m good with sometimes the challenges I face in my life don’t leave me with enough energy to spend on caring for others that have proven to not have my best interests at heart.

If all of that wasn’t enough? Being angry on a constant basis is exhausting. To be angry over what some broken person did all the time? I don’t know about any of you…I don’t have time for that. I have my health to worry about, walks to take, wildlife to meet, and plenty of art to make. I have friends, blood family, and chosen family that deserve much more of my time and attention. More importantly? I deserve that positive interaction.

So whether you call all of that forgiveness, or you have a different vocabulary for it, I hope how you move forward only goes to bring you profound peace for you, and you first and foremost. And in case you need to hear it…You’re allowed to cut off those that have hurt you no matter how they’ve changed or how many times they apologize. Even if you’re married, or they’re your parents, or they’re your best friend. You’re allowed to not feel love for them anymore, just as others are allowed to forgive completely. It’s okay if others haven’t forgiven you, they aren’t required to, so do the important work that it will take to forgive yourself. Do what you can to be the best version of yourself, and screw the idea that your version of forgiveness has to look the same to everyone else to be valid.

It’s not just today either, it really has been the past few weeks. Our weather has gone from the low 40’s and mid 30’s (Farenheit) to the 70’s and back again like it’s an Olympic challenge. Winds that are gusting at 60mph every few days. And honestly? My body is just not built for this. I would give anything to say that I’m simply just lazy because then I could drink some coffee and get back to things. Unfortunately, I assure you, lots of coffee on days like this will just lead to muscle spasms making everything more uncomfortable and leaving me just as drained feeling.

I hate the days like this because I’ve got things to do. I’ve got IT projects that I need to do, but I need more concentration than I’ve currently got to do it. I’ve got laundry to do before the week starts. Dishes always need done. I’m still behind on craftwork that I’ve been doing. I have things I feel I absolutely need to do!

So what do I do to cope and get things done on days like this? When it feels impossible to just get through the day?

Well…I go to work and do what I can as much as I can. But other than that? I rest. Most people would expect a list of things I do to try and work around this feeling of pure exhaustion. Drink coffee, do cardio, make a plan, take suppliments. But nope. I rest. Sleep if need be. I have slept for the majority of a day a few times.

Why? Because what we feel on our bad days is not just because we’re a little tired and need help getting kick started. Our bodies are done. They’ve got nothing left. To push at this point? You’re pushing your already stretched to the max system to use emergency resources.

I know it’s not the expected response and seems counterintuitive. Especially with the title being “How Do You Cope…”. But here’s the thing, we’re often taught that if we’re young, we shouldn’t need to nap or rest or sleep more than 8 hours. Ever. Unless we’re dying of the flu. It can be challenging for us zebras to acknowledge that we need to rest because of this. The hard part isn’t resting, it’s not beating yourself up for it.

Coping with the idea that we need to rest more than our friends and even older family members can be a GIGANTIC blow to one’s sense of self. Especially, if you’re like yours truly here and feel a need to push and do things no matter the pain level or exhaustion level. It doesn’t help that we totally judge people by their level of productivity. I can’t tell you the number of times I’ve seen memes about “Don’t tell me you’re tired until you have children” or “People who don’t work have no right to tell me their tired” or similarly worded things.

This may be an unpopular opinion, but those people are small minded and just want an excuse to feel better about their own exhaustion while being able to praise themselves for being able to feel that they’ve earned their rest period. They’re too busy ignoring the fact that they’re inwardly frustrated at their own inability to push past things to confront the reality that everyone feels different in different circumstances and has different limits. They’re too focused on seeing everyone as the same as how they would react or respond. Mainly…because I used to be one of the ones that beat myself up for needing to rest, or passing out shortly after getting home from work. I had to rationalize it for a long while, and it wasn’t easy. That right there is honestly what I needed the most help with. Learning that coping meant I had to stop being angry at myself every time I needed to rest.

So here’s the thing, you know how I mentioned that the allowance most give us for extra rest is if we’ve had the flu? When you’re fighting the flu, your body is fighting. It’s working overtime to get rid of an invader all while the invader directly impacts the bits your body needs to work. This is pretty common knowledge, and most will say to rest to give your body a chance to fight the virus. But…think for a minute…how is that different from what happens to a chronic illness? We may not have a forign invader to fight off, but sometimes our special needs bodies like to create battles to fight for themselves. It’s not that different as far as the end result.

Take my system right now for example. The barometric pressure changes, my muscles need to go into overdrive to compensate for the change in external pressure to keep joint stability. Joints still slip out because muscles aren’t ligaments and tendons, pain hormones are released, endorphins, inflammation markers. All those things shift ways your body digests food. Then you get fatigue because your body can only make endorphins for so long before it needs to rest to make more. But when I’m sleeping, I’m still in pain so I’m not getting actual rest in order to make enough for the next day. Then I’m pretty much feeling like Sisyphos with trying to catch up while not having enough energy to do it being my boulder.

I had to accept that I needed rest. That I was not built the same way as my friends who could stay up late and get up in the morning with just a quick jolt of coffee. That I was not like my friends that can just go to the gym even when they’re tired and once they get their heart pumping they’re better. I am not like my older brother that seems to be always running to a crazy level of productivity. I am me. I have different limits. It’s okay to be more exhausted than my friends that have multiple children. I don’t have to like it, but I had to accept it. Allowing myself to rest and even sleep for 10 hours through the day some times, allow my body to recharge on bad days so it has enough energy on the good days.

There is a point at which we should all look at our lives if the bad days start to outnumber the good ones. We should head to our doctors and get some tests run to make sure something more dire isn’t at hand. I’ve had where mono decided to flare and while all my organs were functioning fine, it was important for me to know that mono was the reason that I struggled to stay conscious at work for a whole week.

We may be more exhausted for smaller stimulus than most, but that doesn’t mean we shouldn’t question it either. Get with your medical team to talk about your exhaustion levels. See if there is a problem in your blood work. I’ve had issues with my VitD (as many of us do due to absorption issues) and it was at a level that was dangerously close to single digits. I’ve had anemia issues that needed addressed due to hemoraging (thanks PCOS and hyperplasia). I’ve have flares of mono when I get too stressed. All of this was important to get addressed. Taking the proper VitD suppliment, getting the Mirena IUD, and proper diet are all incredibly important in this circumstance. And even though mono was just treated by resting…it helped to know that was what I was facing rather than guessing and hoping or being defiant when my other half asked why I was sleeping so much.

Get. Your. Shit. Checked.

And then learn to accept that you may just have a new level of productivity to adapt to. The dishes will wait. Maybe a dishwasher is a worthwhile investment for you. Maybe just paper plates. Maybe you need a Roomba. Maybe you need to pre-make easy meals on your good days. Or get the meal supplement drinks for when you just can’t. Have an automatic feeder for your pets, or a support network that can help.

The main thing is learning to cope with the fact that you’re not a lesser person because you are not capable of running around as much as your peers or even as much as you’d like. After that, it’s all creative work arounds.

One of my things, has been learning to make meringue cookies. The most labor intensive thing, is piping them when they’re mixed. Other than that, I can watch them go. They’re relatively easy, tons of flavors, you can spoon them out or pipe them into pretty designs. So it allows me to feel accomplished because I’ve done a tangible thing. AND I get to share them. Want to give them a try?

What you’ll need

• Mixer with a whisk attachment, stand mixers are easier
• glass or metal mixing bowl
• small glass, corell, or metal bowl for egg seperating
• cookie sheets lined with parchment paper
• rubber scraper
• 4eggs (or maybe more)
• 1 cup sugar (run through a coffee grinder for easier incorperation)
• salt
• lemon juice
• cream of tartar
• flavor (extract or spices) and coloring
• piping bag with tip if desired
• oven preheated to 200 (Farenheit)

How to make them:

• Prep all your tools by wiping them down with lemon juice. If there’s any oil at all, this will kill your meringues. So just wipe them down and the lemon juice will help get rid of any traces.
• Seperate your egg whites one at a time using the little bowl. Why a little bowl and not in the large one? Because any yolk at all will kill your meringue. So seperate one so the white is in the little bowl, pour it in the big one. Do the next. Keep going till all 4 are seperated. If you accidentally break the yolk, dump it (or cook it and make yourself a snack), wash and wipe the bowl out with lemon juice, do another. You need 4 whites in your large bowl. **TIP** Eggs seperate better when they’re cold.
• If your egg whites aren’t at room temperature, just let them hang out until they are.
• Add a pinch of salt, and a bit bigger of a pinch of cream of tartar. Maybe…MAYBE a 1/8 of a tsp.
• Whisk on high till you get soft peaks. It takes a bit, so just watch it do its thing.
• Slowly, like literally take a spoon and put in one spoonful at a time, add your sugar.
• When you’ve done about 2/3 to 3/4 of your sugar, any flavoring that is free of oil should be added now. I’ve used marachino cherry juice, sandalwood syrup, vanilla extract, and cinnamon here. You can also add food coloring here if it is oil free. If you don’t have any…just keep going till all the sugar is in.
• Keep whisking till you get stiff peaks. (See, told you most of it is just watching it whisk)
• If you’ve got liquid flavorings with oils or things like chocolate chips, fold them in now with your rubber scraper. Add any other coloring you’d want too.
• I normally start preheating my oven at this stage, because it doesn’t take long to get to 200.
• Use the rubber scraper to transfer your meringue into a piping bag if you intend on piping them out in pretty designs. If not…ignore this and move on. **TIP** I’ve also put some food coloring in the bag and THEN added the meringue. That’s how I got the stripes on the meringes in the bottom left of the image above.
• Start to lay out your meringues on your lined cookie sheets. If your meringue has stiff peaks, it’s not really going to expand much, so you can place them kinda close to each other. Try not to make them to big or they might not dry out the whole way. But have fun with it.
• If you want any sprinkles on them, do it now
• Put them in the oven for just over an hour
• When the hour is up, DON’T TAKE THEM OUT. Some people leave them in the oven with it completely closed, but I prop the door open with the end of a wooden spoon so it’s only open a tiny crack. Let them cool the whole way. I know you really want to eat them. Go sit down and watch a Netflix episode that’s about half an hour.
• When they’re cooled, they’ll come right off the parchment paper and you need to put them in an air tight container. If they’re sticky, but cool…try and put them in the oven for half an hour on 175, then let them cool again. If they get exposed to too much moisture in the air, they’ll do this. Don’t try to put them in the fridge or anything, just let them sit on the table in their container.
• Ta da! You’ve got meringues! And you should have a good number of them. All with mostly watching and waiting.

I’ve had a lot of fun with them. I’ve done rose and pistachio, vanilla, cherry with chocolate chips, sandalwood, vanilla with a touch of cinnamon, cinnamon sugar, pumpkin spice, raspberry and vanilla, banana-peanutbutter-chocolate chip (using powdered peanut butter), and I’ve got more ideas.

Now, today, I am not even up for these. But they’re something pretty easy for when we go to holiday dinners that look fancy, taste fantastic, and I don’t have to put a whole lot of effort into.

After having the world’s stupidest period my whole life, I finally get a doctor who says “hey, PCOS” and doesn’t do anything.  But, after a couple of years of my period playing with me (everyday, nada for months, then need transfusions) a good doctor repeats the PCOS bit and then does the newest version of a DnC and I find out I have Cancer.  Endometrial adenocarcinoma, stage 1/3.  Look at me go.

Then a CT scan shows several inflamed lymph nodes nearby and either they’re just grumpy because I have an infection (my sinuses have hobbies) or they’re mad because there is cancer in my body, or the cancer has spread.  So. February 11 I have a total hysterectomy and they’ll take out the grumpy nodes and test them.  It will be ten or more days before I find out if my cancer has wanderlust. Seriously, look at me go…nuts I think.

No two people react to the pressures of cancer, strange barely known diseases, or other continually vicious diseases.  Some are anxiety zebras, but others are giraffes or elephants, whatever.  Personally, I think I’m a pied aardvark, and yes I’m just that weird.  Or maybe I simply feel that different from others I’ve spoken with who’ve faced cancer or other attack diseases.

I feel like I am cocooned with numbness, discounted and floating watching things happen “over there”.  Sometimes I feel like I’ve been struck by lightning and panic overwhelms me.  I’m not sure how to deal with it except to endure and hope to make it out the other side.  There is no set of rules or map to make it through this with who you were before completely intact.  Not that change is necessarily bad, but in the midst of dealing with something like cancer it’s a bit “et tu, brute”?

Friends and loved ones want to help, and in that desire, can add to the pressure and suffering of the patient. Some folks want the wailing and hugs, others want distance and calm. People like me will reach out when we can handle it and pull back when it just makes things worse.  It helps me to know people care, I just can’t handle the overload. I suggest that family and friends let the patient know you care and will help, but also let them feel it’s okay to ask you to step back a bit sometimes.  It’s horrible to feel overwhelmed and afraid to ask people to give you some space.  We’re trained by society to feel that it’s selfish not to accept help, even if it adds to the pressure and stress we are feeling. 

The time after the operation, waiting for the test results will be my worst.  I expect I will try several friends and family members patience.  I can only hope that they understand there will be times I want to talk with them, others I won’t.  I may do everything to avoid talking about “what ifs” and cancer, and it might be the only thing I talk about.  I just hope they can go with the flow, and make this nightmare a bit less in charge.  

Administrator’s Notes

Your friendly Coyote in Zebra Clothing here. If it wasn’t implied by this post being shared on this page, the reaction talked about here is completely normal. Nothing that was talked about is unhealthy or dangerous.

A lot of this comes down to understanding what someone is going through rather than assuming you understand. Respecting that, as stated by the author, no two people react the same. Whether not wanting to display their grief publically, whether they want to be hugged, whether they cut off their emotions and talk about it clinically.

What we should all be doing when someone is facing a life altering diagnosis, is listening. Being there as they ask us to.

It is easy to sit and say what we think the person should be feeling, or how they should be coping. But as long as they are moving forward, even it if is extremely slowly, then let them go at their own pace. Be supportive in ways they ask you to be supportive.

While the author doesn’t have EDS, and while cancer is a disease that we’ve often come to be able to cure, that doesn’t take away from the emotional impact. And as stated in previous posts, diagnosis is a Pandora’s Box. It’s grieving and we should all know that grieving is a complex road for all of us.

I am not concerned that they’re going to get in contact with anyone on my team and spill all my secrets. I am concerned that they’re going to take up time of anyone on my team with information my doctors are already aware of or exaggerate their story because they believe they need to help by making sure a member of my medical team take my perceived infractions seriously. It’s this kind of thing that leaves me feeling betrayed and infantalized rather than assisted out of caring. However, after discussing with a few people that work in the field of medicine, I decided I also needed to take a breath and acknowledge that having someone come and talk to them can, in fact be helpful. So…now that you’re aware of how this idea was born, onto the main event.

When You’re on the Outside Looking In

In general, we are all grateful for those people that are looking out for us. Though I will grump and growl (and I’ll rarely admit this to someone’s face) I am typically grateful when a friend makes me sit down when I need to. I’m so used to pushing past everything, I may have a tendency to forget that I’ve got limits I should be adhering to. It makes it even more complicated when I can go from functional to including words like “shmruffle” in a sentence and expecting that the person I’m talking to will comprehend what I meant.

There’s currently one member of my team I’m in regular contact with, a few that I’m on semi-regular contact, and a few that just kind of pushed me off till I’ve got other things sorted. That’s a lot of people taking blood and samples, running diagnostics, and giving orders. When I was given the green light to start walking, there were several people that jumped to threaten calling some of my medical team. To them, I’ve been talking about the frustration of not walking, and not being permitted to walk, and there I was walking around outside. In their mind, the frustration had gotten the best of me and I was making a desperate escape from the confines of my knee scooter.

There is usually such a long mental checklist to most things I do, and I don’t often share each and every conversation with those around me. I’m sure it seems reckless or straight up dangerous to some people when I’m all of a sudden walking or trying out a new treatment. Some tasks I’ve been given, induce pain and it doesn’t help that I’ve got a lot of morbid humor to me when I explain what I’m doing. Applying silver nitrate becomes “using a death stick to murder the inside of my ankle”. Not exactly a mental image that screams safety and confidence in my approach to treatment…I know. It creates an atmosphere of accentuated concern among some of my close folks. It’s hard to picture that I’m sitting here, wincing and squeaking in pain willingly, then be happy and chipper when I talk about how much I hate it, and then acknowledge I’m often not healing as a normal person. To most, it really seems like there is a communication or adherence to orders issue that is probably making my circumstance worse.

It’s for this reason that I try not to get too annoyed with those that have a tendency to “mother hen” around me. Sometimes, I legit need to be yelled at to sit my ass down. Other times, they’re only seeing the small bits and it feels like conflicting information in their mind. Aside from being psychic, it is really difficult to know which is which unless you’re part of my medical team. While I know that I’m following orders and telling my team what I’m doing and the reactions that come about…that’s just me and how I personally approach life.

Doctors Only Have the Information Provided

There’s an issue that comes up when it comes to patient care though. As much as we wish they were magical creatures that could always divine the correct diagnosis and treatment, even the best ones are only as good as the information they’ve got to work with. If I had been walking around in the yard barefoot while I was supposed to be having it elevated and yet not giving that information to my medical team…that’s a problem in helping my doctors diagnose the core of the issue. Same with if I lied about treatments or reactions to said treatments. I would have been hurting my chances to heal, and that has less to do with my doctors and more to do with me providing false information.

Sometimes, as I mentioned above with migraines, my other half has provided important information that I have not mentioned during a visit. A medication I forgot to mention. A symptom that slipped away from my mind. It’s one of the reasons that I am relieved that he comes to most visits with me. If I forget something, I’ve got backup! For my appointments, it’s not so much that I’m needing someone to make sure I tell the truth as much as it is making sure I remember all of the relevant information to share without carrying a scroll and dramatically rolling it across the floor to read off of.

There are those that should have someone come with them to appointments because of their tendency to contaminate the truth. This may be because of declining mental ability due to dementia. It could be that they’ve got another mental hurdle creating a compulsion to decorate the facts. Whatever the reason, their health and care will be compromised if their medical team does not have access to the reality of their situation. Those family and close friends become invaluable.

Helping a Patient isn’t a Competition that Wins You a Gold Star

Because of my limited mobility, there’s been times when a friend has helped me get to appointments. There have been at least one that had it in their mind this was a perfect opportunity to throw me under the metaphorical bus. They wanted to tell the doctor all the things they thought I was doing wrong. It was like screaming “I’m being the bestest helper friend and telling the doctor because I care the mosterest. Look at me being the bestest helper!”

Most people don’t intentionally go out of their way to provide false information. When it happens to a significant degree they usually call it Munchausen by Proxy and is considered abuse. But, as annoying as it is, most really don’t have malicious intent. It’s more often just…slightly misplaced and misdirected.

Giving false or exaggerating information to a doctor, can be as harmful as neglecting to share important facts. If I’ve been walking and keeping my team informed about the distance and updating them on symptoms, this is important. If someone shares that the walking has included going up and down flights of stairs, this could be an important tidbit, especially if the core issue had been getting worse. However, if that someone was exaggerating a single step down that was occasionally taken to make it sound like I was taking flights of stairs…this is giving the doctor an inaccurate correlation.

Often, they just are too focused on the need to be seen as a kind of White Knight to the patient in question. Their focus is to be seen as important and significant. Too many times, an impressive amount of self deception is involved to where they have convinced themselves that without their involvement, the patient in question will fail to receive the proper care.

This is complicated by times when their input may have actually been invaluable to a situation. Any bit of self deception that was starting to chip away, gets plastered back up and they feel even stronger that they need to share things to “save you”.

What Can You Do?

From a patient perspective, take a step back. Take a few deep breaths. Then take a fresh look at what’s going on. Is this person providing any information that has been helpful? Are you angry and upset because they’ve embarrassed you with information you were uncomfortable sharing, or because they’ve complicated your case in unnecessary ways? There are some people that a simple conversation will suffice. Others, you may try to talk to your doctor and see if they’re willing to ask them to leave the room. Call the office and explain the situation so it can at least be noted so the doctor can be aware.

If you are the friend or family member reading this, I do hope you’re not defensive. Take a hard look at your approach. Are you excited about sharing information about the patient? Do you find that you’re making a long list of notes? Do you often interrupt the appointment to interject information before the patient can fully answer? Do you wish you had a direct number for the doctor so you can call them when the patient does something wrong? Have you called the office in between appointments just to leave a message for the doctor about something the patient has done wrong? If the doctor gives the patient more direct attention than you during the appointment, do you feel like they ignored your input? Has the patient or the doctor asked you to let the patient speak for themselves when you try to give information?

If you answered yes to any of those, you may need to take a step back and really evaluate what you’re trying to accomplish when talking to their doctor. Yes to more than one, and you should REALLY take a step back. Your desire to be helpful should not be overpowering actually being helpful. The first priority is and should always be to make sure that the patient is getting the care they need. It should not be an excuse to get a doctor to agree with your personal views on the life choices of the patient. It should never be a gossip session to share dirt on the patient so they’re embarrassed and more likely to comply with what you personally think is best.

Information is power. Almost all of us have had heard Uncle Ben tell Peter Parker “With great power, comes great responsibility” at some point. This is one of the many examples of how that phrase can be applied to real life situations. Sharing information with the doctor of someone else is a responsibility that comes with very real consequences. Take it seriously. Use the power of that information with awareness of those consequences rather than letting the feeling of wanting a gold star for your noble effort creep in.

When I say that it’s been one hell of a journey…

I’ve had multiple procedures done on my right ankle and it still is not behaving, despite having one of…if not the…best in the field overseeing it. The first surgery was about 2 years ago, it might be longer at this point because I’m honestly not sure and it’s not extremely relevant the exact date. It’s gotten Pseudomonas, a car wreck that caused the stent to migrate, MRSA, a tunneling wound that went about down to the implant, Chronic regional pain syndrome(CRPS), subluxation of a different area of the foot bones that shouldn’t be happening, intense allergic responses that caused a fair sized area of skin to erupt in terribly itchy blisters and then the top layer came off, weight gain and muscle atrophy from the inability to get up and walk, and a granuloma that just won’t take the hint and die so we’ve named it Rasputin. We’ve had 3 occasions where I had to go into the OR get work done on it, and I think we’re up to…5 or 6 procedures in the office ranging from removal of the wayward stent to debridement and stitches. Meanwhile, there was just a single OR visit for the procedure on the left ankle and it’s happy as can be.

We have no idea why it continues to have all the problems it does DESPITE following orders to the best of my ability. I’ve got saline to clean it and wear a shower boot so it doesn’t get wet with tap water. I’ve been mostly on a knee scooter to get around. Needed to wear a brace off and on, and especially to sleep. Had to pack a wound with using packing gauze and sterilized tweezers. Use silver nitrate on it daily for a while and it occasionally burned significantly. PICC line with daily infusions when one of the infections wouldn’t go away. Changing the bandage of this blasted thing, several times a day, for the better part of the entire time.

We’ve tried iodosorb, silver nitrate, acetic acid, carbolic acid, calmoseptine, stitches, Aquacel AG bandages, high absorbency bandages, gauze, different types of paper tape, colloidal silver, essential oil blends, diet shifts, medicated packing gauze, regular packing gauze, injections and I’m sure others I’ve forgotten. I’ve seen my podiatrist, infectious disease, acupuncture, my primary care, physical therapy, and even networked with other wound care specialists and someone that worked in hyperbaric therapy.

We’re still working on a solution that doesn’t involve an OR again. And it’s getting so very close, but we’re not quite there yet.

But with EDS, we’re in for a marathon, not a sprint.

Despite everything I listed above…I’m generally not angry about it. That’s not to say I’m always the epitome of sunshine and rainbows. There’s absolutely days when I’ve broken down in tears because I got less than ideal news or a new suggestion to try. I have my moments of “Why am I like this? What’s wrong with me?” or similar feelings. There’s also times where I’m so angry that it oozes into every room of the house like a bad smell, my other half says I’m “filling the house with Fuck You”, because I’m so tired of looking at it and not having answers. That’s just being human, as much as emotions are icky and often involve unwanted fluid leaking out from around your eyes, it just comes with the gig.

Maybe I’m not angry all the time because I know it’s confusing. If one of the most experienced surgeons for EDS feet and ankles is confused…I’m personally more intrigued and interested in helping any way I can rather than wasting time on being angry over something that has no blame to place.

Maybe it’s because I know we’re a complicated mess where not a lot of doctors understand in general let alone the small nuances. I can’t be upset at the fact they’re confused, when there just isn’t information commonly available for them to research. Let’s face it, enough of us have seen when our friends post a bad headline on a subject that could be easily researched and learned about. This happens so much, educated folks put out articles to counter it. I’m still haunted by the fact some people needed to be told Sticking a Wasp Nest in Your Vagina is a Bad Idea. Seriously ladies…WTF? Back on topic, doctors are still just human, no matter how much we wish they were so much more. So if we can’t get people to research obvious things…you’re expecting every doctor that already has a full plate with every other patient to be able to hunt down information on your specific set of weird when you may be their only EDS patient? Sure, I could wish that it would be the standard. However, do remember that just because they graduate with a degree that says they’re a doctor…it doesn’t mean they’re at the top of their class and they’re a super geek with an eidetic memory. Also keep in mind, for a large population, they don’t need to be.

Maybe it’s because I know that because we’re a genetic mess so sometimes there’s no easy answer, I’m not expecting my visits to be super productive and helpful every time. Sometimes, they’re just checking in and making sure it’s not worse. Sometimes it’s planning for the next step. Sometimes it’s drastic steps forward. It’s very fluid. But even on the days of rapid change, we’re not sprinting towards a finish line. We’re in a long marathon with a never ending path of hurdles along the way. It doesn’t mean I stop hoping for simple and easy answers, it just means I adjust how much I expect them. We don’t get an inhaler and most of our issues are resolved. We don’t get to take a pill and that’s the end of our complications. We don’t have to like it, but it’s in our benefit to accept the reality of it.

You say patience, I hear F*You

Now, despite me saying that I’m not angry all the time, one thing I do have that tips me over the edge is my level of patience. Oddly, this usually surprises people that know me. I do really detailed paintings on feathers, cross stitch, and beadwork with tiny seed beads. People assume I have the patience of a saint. I do not. I’m full of stubborn ambition that I will accomplish a goal that is set in front of me. If that means ruining 20+ feathers on my way to figure out how to get it to do what I want…I’ll do it. If my cross stitch project takes 5 years because it’s absurdly huge…I’ll do it. I may cuss at it and scream occasionally, but I’ll do it.

When people ask how I’ve managed to do all the things along the road to healing. Stubborn ambition. Stuffing stuff into an inch deep hole in my ankle will help it? Kay. Get out of my way. I got this. Walking on a very angry nerve will desensitize it so it stops screaming so loud? Kay. Someone walk with me in case I pass out from pain, but don’t try and stop me. Numbing agent wearing off but I still need stitches? Kay. I’ll yelp and whine, but just get it done. Stubborn. Ambition.

I don’t deal well with the concept of patience. I want a goal to work towards. Something to do in order to help me get there. It’s one thing if the pain is significant to the point where it’s excruciating to do much more than lie in bed. It’s another when you just have Rasputin the granuloma that follows its own rules for existence and mocks you by returning no matter what steps you take (or don’t take). When you aren’t in pain and yet you just have to kinda sit there and watch your other half do the majority of the house chores, and cook, and feed the animals, and……you get the picture. Yet Rasputin pretends to sleep and comes back with a vengeance without any discernible reason.

When there’s nothing to do to help, I go a bit stir crazy. I don’t like to just sit and wait and hope. If you tell me “you need to sit with it up for now because having it level with help defy gravity pulling fluid to your foot and therefor reduce the drainage and the moisture level”, I got this. I am doing a thing to achieve a specific goal. I will sit with my leg up at work and at home and try not to even be in the car for long. To the outsider, it looks like patience with letting myself heal. In reality, I’m working on a task. That task just happens to need me to be stationary. So if you tell me, “you just have to be patient”…to what end? Why? Will it help? How? I don’t understand. I need it to heal, if patience will not help in specific, I’ve no need for it.

This is accentuated if someone tries to tell me that I have to be patient to wait for the implementation of some divine plan. I have to learn to be patient because something else thinks it’s important for me and is implementing a plan without involving me in it first? Nah, I’m good, thanks. If it’s that important, said divine presences are free to make themselves known and I’ll be open to suggestion. Until then, I’ve better things to do than wait around in hope simply being patient will fix a damned thing.

How to twist it to my benefit

I’m not implying this is a good way to look at things. It works (mostly) for me, and I don’t have any designs to change it any time soon. HOWEVER, at it’s core, I’m sharing this because I’ve mixed in a bit of how I turn a flaw into something I can work around for my benefit. Did you catch it?

By definition, patience is the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. Personally, being told to “be patient” has managed to work against any of those virtuous qualities I’ve worked to attain. So…I found ways to be patient, without calling it that.

I’ll call it taking the time to understand the reality of my circumstances and giving empathy to those that are working with me.

I call it discovering reasons behind why I should be stationary and simply wait for healing to happen.

I call it stubborn ambition when I need to accept the fact that it’s a long road ahead of me that may not have a pleasant ending instead of just a hop, skip and a jump to a full recovery.

I won’t call it patience, because to me, patience is when you handle it gracefully inside and out. To me, it’s not when you’ve engineered reasons behind why allowing delays or experiencing suffering isn’t something to be angry about. Perhaps you might see it otherwise and think with all I’ve faced, that you’d be angry and I must be exuding grace no matter what I perceive in myself. I don’t think it really matters though.

The most important thing I hope you take away in all of this is there is always a way to turn things in a different perspective to work for you. It’s not about giving people too much leeway on not doing their job when you have a doctor that isn’t able to help you. It’s not about forgiving and allowing yourself to be treated badly, it’s deciding what you can impact and what is out of your control and acting from there. It’s about shifting things so you are not held down by their actions or lack thereof. It’s not about never getting angry and heartbroken, it’s about what you do after in order to help yourself keep moving forward.

So it’s okay to not have the patience of a Saint. It’s okay to get frustrated or angry. It’s okay to yell and scream at your circumstances.

Just don’t forget that the significantly more important thing is to be able to come back from that in order to do whatever you need to. Be mad at the doctor that dismissed you, vent and rage, and then find one that is better suited to your care needs. Don’t give other people or bad circumstances the power over your life. Keep at it because you are worth it.

I’m not going to tell you to just be patient. Or good things come to those that wait. But I will tell you that you can’t find the good things of you stop looking for them. May you always find the strength to keep up working towards your goal one more day.

I hate to be the one who bursts that particular bubble, but you want to know what most of those situations consist of? Trying not to fall over, wincing in pain, being exhausted from the effort it takes, and feeling a mix of embarrassment and annoyance that you have to ask for things you used to do on a regular basis…like reach the shampoo.

Now, this isn’t to say that you and your helper can’t or shouldn’t decide to make a fun time of it when you’re both feeling up to it. Please do! Remember, Safe, Sane, and Consensual…and then have a blast. But the concept I want to touch on is how the “helping naked people always leads to sex” idea is really troublesome on several fronts.

Finding Help That Is Helpful

There are some programs that get a nurse or other home health professional that come to the house and assist with this kind of thing. But not everyone qualifies for it or, like me, live in an area where that’s not really an option. My partner helped out when he could, but maintaining daily life got in the way of him being available 24/7. That left me with needing to ask people I knew.

Now, I’ve said before that I am not the queen of modesty, despite that most of my clothing is actually pretty modest. Once I’m comfortable that you’re not going to leer at me like you want to wear my skin as a suit…I just don’t care all that much. Problem is that no matter how many people try and state how they won’t be affected by it, their facial expression and slight change in vocal pitch says otherwise. I don’t expect people to be robots as far as response goes, but when their eyes get wide and they smile and their voice goes up an octave? They’re way too excited for this to just be help.

Thankfully, there were people that have been happy to help in the way that I needed, so they’re out there and they can be found. A lot of people who have done assisted care often just switch into a kind of “work mode” and you become a job instead of a naked body with sexual potential. I can attest to this on two fronts, helping with medical care and using people as models for art projects. It’s just a process that needs to be completed. Yes, I am fully aware that I’m looking at genitalia, but they just turn into a thing that’s secondary. Background information. I can even inwardly admire anatomy and not act on it or even vocalize it. It shouldn’t be a novel concept.

I need someone to be watching me, yes, but I need them to be paying attention to if my drugged self is about to fall over. If they’re too busy staring at my boobs or trying to put their hands where they don’t belong…they’re not paying attention to MUCH more important things. I also want to be where I can trust that I won’t be sexually assaulted because of being partially incapacitated due to surgery restrictions and/or pain medication. If I wanted to be in a situation where I wanted them to fully appreciate and enjoy the fact I was naked, I can assure you the introduction to that kind of interaction wouldn’t be “can you help me not die in the shower?”

Jealous Suspicions

This is something that I experienced in a past relationship and see all the time being discussed in support groups. Finding help that you’re comfortable with is challenging enough, but when a partner believes that your helper MUST have nefarious plans, even to the point of throwing a tantrum when a nurse is the same sex the injured party is attracted to. This kind of reaction just makes an already uncomfortable situation feel unnecessarily worse.

I’ve got some pretty strong opinions on this aspect, and they seem to be pretty unpopular opinions but I’m okay with that. If you can’t trust that your partner will be honest with you about their interactions with their care taker when not in your presence, your problem is much bigger than just a little normal jealousy and you need to figure out what to do about it. If your partner is telling you that they’re trusting you but they just don’t trust other people and using that as an excuse to make this process more uncomfortable, this is a manipulative way to clothe jealousy as care and you need to figure out what to do about it.

Bad things do happen. I’m not going to even pretend that it’s not a possibility. However, you can’t live a happy life if you’re always assuming the worse is always going to happen. Whether you’re in a monogamous or a polyamorous relationship, it’s healthy to have conversations about what to expect and the concerns of all involved. I can’t stress how important communication is here. I also can’t stress how important it is that this communication not be full of shaming other parties due to irrational fears based in fantasy.

Trust needs to be established, no matter what flavor of relationship. If you’re poly, you need to discuss whether it’s a possibility that is permitted and the rules of said encounter and be able to trust that those rules will be adhered to. If you’re mono, you need to be able to trust that your partner will not be asking for their care taker to have sexual encounters AS WELL as be able to tell you if it happens against their will. I’ll tell you a secret. If you shame your partner before anything happens, they’re probably going to be too ashamed to tell you if they’re assaulted because they’re afraid you’ll blame them. This isn’t a good situation for anyone involved no matter what happens. Leave your insecurities at the door, and focus on what is best for your partner that needs your love and support as they are going through a rough time and trying to heal.

I had the best reply when asking a partner about his concerns that a friend was coming down from Pennsylvania to help me. I had wanted to make sure he knew that it was another guy helping me, and ask if was he concerned about it. He looked at me, “Is he going to be helping you shower?” I said yes, that’s part of what I’ll need if you’re not here at that time. He nodded, “And do you plan on having sex with him?” I said no, I’d rather not need the help in the shower in the first place. So he shrugged, “Then why are you asking my opinion about it? You need help, he’s helping, sounds pretty simple to me. I’m glad you have someone to help you like this”. I told him that’s why I love him and that was the end of it.

Gossip and Assumptions

Making conjectures and gossiping about said conjectures can be more detrimental that one might think. When there is no other choice but to rely on others, it can be a HUGE blow to the psyche. Do you think you’d be comfortable suddenly needing to ask someone to help you put on underwear? Or if you need help sitting on the toilet after taking your pants down? Personally, I had a really hard time with it for a while. Not because of modesty issues, but because of the lack of control. I like doing things by myself, most of us do. Not being able to have that ability to do what I need on my own, caused some feeling of helplessness. I wasn’t exactly excited about having assistance, whether one of them was aesthetically pleasing or not.

Do you know how often I’ve had it get back to me that it was believed that I didn’t really need the help and I was just playing being in that much pain because one of those assisting was an attractive guy? Or how many times it got back to me that guys I knew were jealous because if I was willing to have one guy “help” when I was naked, they wanted a turn too? I can promise you that the second I was able to do it myself, I celebrated the fact I could tell them not to worry about me.

Thankfully, I’m the type of person that it just annoyed me or I found it hilarious, depending on my mood, and those helping me felt the same. I’m of the mentality that it’s nobody’s business who I’m sleeping with unless they’re directly involved. If people are so bored and simplistic that they have nothing better to do than make up stories about what I do behind closed doors, it just tells me who I don’t need to spend time or energy over. There was a time where it would have bothered me more, and I feel its important to point out that there is nothing wrong with feeling like such things are more significant in one’s life. Just because I keep my emotional response limited, doesn’t mean I expect anyone else to do the same.

It’s perfectly normal to feel ashamed, betrayed, embarrassed, angry, or any mix of emotions with this kind of thing happens. Hearing lies spread about you, especially when you’re already in a low spot, can be really difficult to hear. We’ve all heard the adage about sticks and stones, but words hurt too.

Whether this kind of absurdity is from friends, family, or co-workers, it is simply disgraceful entertainment at the expense of someone already suffering. Unless there is a genuine concern about the quality of care one is receiving, there’s no reason for such base speculation. It adds undue stress to someone that already has plenty of concerns that are much more significant and deserve to be allowed to be taken care of without this kind of thing trying to slither into the forefront.

What You Can Do

You can’t control how other people react and respond. You’re never going to stop people from contriving stories. So while it can be hurtful and stressful, try to just accept that as something that is outside of your control.

What you do have control over is if and how you respond when it happens. I’m not saying to be devoid of emotion, though it can sometimes come across that way. I’m simply suggesting that you take the reality of the circumstance into consideration if you’re ever in this situation.

If you are the injured party, have meaningful conversations with your partner(s). Talk with your support network and be very clear about what you need from them when it comes to things like showers and getting dressed. Don’t be afraid to fire someone from your support network if they are more focused on the fact that you are in a vulnerable position or insist on helping with areas that you don’t require only because those areas are inherently sexual. Try not to engage in the fantasy world others construct of your situation aside from telling them where they can put said construct. Don’t let other people that do not have your needs as far as safety and healing as their first priority to convince you to compromise your level of care. You just focus on taking care of you.

If you are the support for an injured person, leave your fantasies at home. Put them in a box, wrap the box in duct tape, and then smash it with a hammer. This is applicable whether you are the one physically present and assisting or you live several states away and just talk on the phone. Your injured person will be in pain, on meds, and is probably scared. They don’t need something else to worry about, they need to know you’re on their side and care about them.

Sexuality is a normal part of being human. It’s normal to think about it, to have fantasies, and even for unplanned things to occur. But we need to discuss it in a real way, especially when it comes to things that aren’t inherently sexual in nature, like aftercare in surgery recovery. Without accusations. Without assumptions. Without fantasy being mistaken for reality.

Nobody has meant it as a condescending thing thus far. From the outside looking in, they see someone that goes through their life in considerable pain yet you’d never know from looking at her. They hear my story, and automatically picture themselves in it, while relating what smaller influences have brought their lives to a screeching halt. I can see where it can seem like a super power.

She’s walked on a dislocated hip…
Worked through a migraine…
Got an stent removed from inside her ankle during an office visit…
IT’S EDS-WOMAN!!!

However, I don’t have a naturally high tolerance for pain. I adapted out of necessity. It’s not a pretty story, and I seriously wouldn’t wish that journey on anyone. Personally, it’s not a question of being brave or strong. It was simply what I needed to do in order to survive.

There is not a day that I am pain free, so much so I had a full blown panic attack when I was on dilauded after my first ankle surgery. Why did I panic? Because taking an extra pill made the pain go away. My brain had no idea how to handle not feeling pain, so it freaked out and screamed that I must be dying because it couldn’t feel things. It was not a fun time. I’ve been told I’m a trip on anesthesia and during a migraine. Give me meds that take pain away though…and I’m Chicken Little and everything is about to end. The same happened on nitrous oxide at the dentist. The pain was there but distant and…my brain freaked out and it screamed that we were dying. Then it decided to panic and run through a mental checklist of things I could do. Could I blink, could I swallow, could I breathe, could I move my fingers, could I move my toes? All because the pain wasn’t in the forefront where my brain thought it needed to be. My brain is obviously a masochist at heart.

Now, my daily pain varies from a general body ache in most of my joints to a highly significant pain that is nearly overwhelming. It doesn’t happen to a pattern or stick to a schedule, so I wake up not knowing what the day will bring. But, I always have something to do. A job to go to. Chores to try to keep up with. Pets that need attending. Life doesn’t stop because I’m in pain. My snakes don’t care if I have a rib out when it’s feeding day. Things need done, and the world waits for no one. At least…that’s what I told myself. Over the past few years, I’ve been forced into a situation where I need to learn to listen to the pain signals if I don’t want to push myself straight into a wheelchair. But I started pushing when I was very young, so it’s a hard habit to unlearn.

I was told often, that my pain wasn’t real enough for me to be inhibited by it. Doctors, teachers, family, friends. It was always said that I was just a weak girl that needed to get outside and exercise. I was a drama queen for saying normal activities hurt. Girls just need to learn that discomfort isn’t the pain they make it out to be.

My response to all of that wasn’t to get angry, it was to internalize it and believe that I really was weaker than most around me. After all, I could never do a pull up or a push up. Running hurt. I had trouble gripping things sometimes. I could bend weird but I still couldn’t even do a split. I even wanted to cry because my hands hurt bad when the weather turned cold. But nobody else my age seemed to be impacted as badly as I was. My little kid brain, took it as I truly was the weak little girl that they told me I was.

I wanted to prove that I could be strong, that I could learn to be better, be like all the other kids. So I tried to participate, even though my ankles rolled all the time. I’d keep going even though it felt like my spine was on fire. If everyone else could do it…I was going to try and prove I could too. I didn’t know that the people I was trying to measure up to, never felt the pain that I was in. Nobody told me that my muscles were actually pretty impressive however my ligaments came from Gumby and that’s probably where my pain originated. Nobody bothered to tell me that I was comparing myself on an unfair scale. Nobody bothered to even look at it in the first place. So I persisted.

So many people say things about how they could never accomplish what I have. Perhaps I’m a little bit jaded, but I can’t help but be slightly insulted sometimes. To me, it was never presented as an option to give up or to live on pain meds. It was being thrown in the deep end of a turbulent pool and told to simply learn to swim because all the other kids your age have. If you aren’t told that the other kids learned in the shallow end of calm waters, you assume you’re flawed if you can’t accomplish the same. It had nothing to do with being brave and on a noble quest to overcome and everything to do with just trying to be a normal kid, and later, a normal person. And spite. I’m definitely motivated partially by pure spite.

Yes, I can go to work with a migraine and function pretty well. I can act fairly normal when I’ve got a joint out of place. I’m willing to sit through procedures that hurt if that’s what it takes. But at what cost did I get to that point? I can’t say that I’d take it back, or I wish things were different. I can’t imagine going through life any differently. If having EDS means that I’ve got a life of pain, it works out in my favor half the time to be able to ignore it. Try and remember that it also comes with not being able to easily recognize that something serious is going on. The confusion of not knowing whether you should bother your doctor to see if an injury is worth medical attention. Doctors that are unwilling to help you because if you were really in pain, you wouldn’t be able to calmly discuss it. All because your brain has just accepted that significant pain is normal, so meh. Whatever.. Not to mention that when friends come to you with a painful experience, you come across as cold and unfeeling if you’re not careful. “You dislocated your finger? Okay…but…why are you freaking out about it. Just breathe. What do you mean you need help getting dressed? I don’t understand, it’s just one finger, all your others are fine…” And there’s always the really morbid sense of humor that can throw people. Nothing like casually suggesting someone take a chopsaw to your ankle to get most people in a room to look at you in horror.

I have no real concept of what normal life is like aside from an understanding that what I experience is probably different. I’ve had my surgeon tell me how well I’ve handled procedures they’ve done in the office with only some lidocaine. Yet I’m sitting here livid at my system for going into shock when I’m consciously alright from it. I’ve been told I’m weak so often and for so long, I honestly thought it was meant in a patronizing way the first time they said it. It never crossed my mind that the way I go through things was actually impressive.

Let that sink in for a minute. The trauma I’ve experienced is enough for my body to go into shock. But I’m so used to it that my brain doesn’t get swept up in it all the way. You’re not really supposed to be in a mental state to be annoyed at shock response to trauma. How much trauma do you think it takes to get to the point where the brain normalizes it to that point? To be sitting there, pale, shaking, nauseated, sweating, light headed, and to also be annoyed that you have to sit back because your body is freaking out over what you perceive to be “a little pain”. Fighting with yourself and trying to will your body into functioning. There’s been more than one occasion where someone asked if I was okay, and I replied in an emotionless voice, “Yeah, just shock response”

So while my high pain tolerance has been something that has helped me to survive and work past some of the hurdles in my life. I hope you are never in a situation where you body is put in the position where it has to do that to survive. My heart goes out to all those that have had to learn it, whether from something like EDS or another form of extended trauma. I know it can feel isolating, and there was a previous post that touched on some aspects of that as well. I know it can feel like you’re less human sometimes. It may not be traditional heartbreak from a lover, but it can sure feel like a part of you has been ripped out anyway. We may seem super human, or maybe less human, but really…we’re really just more broken than most and a bit on the numb side.