Creative practice: Refilling the Well with Art

As the smoke from the Canadian wildfires fills my neighborhood and little house with pine soaked soot that triggers my condition, I thought it was a really good time to talk about refilling the creative well through a creative practice.

My body would like to hyperfocus on survival right now, even though we are doing a perfectly fine job surviving. The anxiety this condition gifts me in these moments of a flare has a lot of chemical energy. Energy that needs guidance to prevent it from turning into neurosis, catastrophizing, and just generally feeling miserable.

This post is about becoming aware of the relationship we have with our bodies, our psyches, and the environment we’re in to see how that has an impact on our creativity. And why in this place of self-awareness, no matter the circumstances, no matter how far away we might feel from doing the artistic endeavor we have in mind, we are still helping ourselves to create.

So my understanding of creativity has changed a bit with being able to push back a lot of the numbness that comes along with this condition. I’m doing a lot of nervous system focused work (vagus nerve stimulation with a TENs machine), along with calming the immune system and stabalizing the mast cells. With the healing of my nervous system, a lot more sensations connected to emotions and thoughts are turning back on. Creativity is no longer just the logical problem-solving that my brain would like to categorize it as. Creativity is also an exploration of emotions and sensations, and how we feel about the things that come up in our work.

There is a being, not just a brain, in the creativity relationship. And that being needs to feel to be connected to the work it’s making. And that can be really difficult when dealing with chronic illness, where your sensations might be overwhelmed by pain all the time, anxieties, feelings of worthlessness, or hyperfocus to distract from any feelings at all. Chronic illness demands a lot from a being, not just the body. And even though there are many lessons to learn and ways to evolve into a greater version of oneself that never would’ve been available without such an intense catalyst, it can also suffocate the creative process when it’s too much.

Poverty can suffocate the creative process. Poverty and chronic illness tend to go hand-in-hand, both perpetuating the other. When you need your creativity to escape anything, it’s very easy to lose sight of the value of creativity outside of that external goal. It’s hard to remember why you turned to creativity before it became eclipsed by the desperate goal to survive.

Creativity versus the World

When creativity is muddled by one’s environment, the relationship with creativity becomes distorted. Our creativity is a reflection of ourselves, but sometimes it becomes warped into what it’s being asked to be by the problem we’re trying to solve. We start believing that creativity is a thing we do, an entitlement, something that should be able to turn on at a moment’s notice, forever ready. It should never lead us down the wrong path, but only the one we want, quick AF, and that it should automatically deliver us our goals.

You know, like it’s technology, something built to grant us our wishes and work exactly as we demand. We treat creativity like it’s one of the products we make, instead of the source of creation.

When one gets stuck in that dismissive perspective of creativity, you can start getting frustrated when it’s just not working the way you want it to. You can start getting angry that it’s just not delivering. And you can start feeling worthless, because it’s you, isn’t it? You’re the one not delivering. You’re the one not solving all your problems. You’re the one failing, and maybe you’re just not any good at this creative stuff. Real creatives make this look easy, so you can’t actually be a creative. You’re just an imposter.

A defective imposter, at that. (WTF brain? Why do you have to be so mean?)

We are bombarded with messages from people who want to make money by telling us how to feel about our relationship with the creative process. They tell us that the process is easy, and you just need to do these quick tips, buy their book, sign up for their course, invest your time and energy and money into solving your creative deficit. And that if you invest enough, eventually you will be rewarded with the results you want. The results you’ve been promised — the ones all those other creative’s are getting.

Surely, that’s what they did, right? They don’t struggle. Go on Instagram and see all the creative’s who make their work look easy. It can be easy for you too. Just invest in solving your creativity problem.

The thing is, there’s no such thing as a creativity problem. There’s nothing wrong with anyone’s creativity; the problem is in our relationships with ourselves.

Creativity lives within

We forget why our creativity exists. We forget the inner gains as we tunnel vision on the outer goals from creativity. We forget that beings don’t exist to do the same thing every day like machines. And by asking ourselves to do that — no matter the goal — is us asking ourselves to come up with creative solutions to harm ourselves.

We are not characters in video games that get better by leveling up individual stats for hours upon hours a day. There is a whole being that needs to be addressed, that needs to be fueled at all levels, and creativity is connected to that whole being. It’s not like a limb where the stress is felt only if you overwork the joint, or pull a muscle, or break a bone. Creativity lives in our nervous system, in the three main brains in our skull, in our muscle memory, our reflexes, our sensations of the world. It’s in our memories of the past, in our relationships with society, and with being human. Creativity is a part of our psyche, just as much as a part of our logic, and if we are doing things that fail to connect all those relationships properly, creativity can struggle to flow.

Chronic illness turned the question of what I wanted from my body into the immediate, frustrating answer of “I just want it to work”. And of course, the thing I wanted was impossible to have. I didn’t want to accept what I was experiencing. But it’s in acceptance that we remove a lot of the stress of chronic illness.

We already have a world out there refusing to accept that people break, that rest is required, that the demands being placed upon us to be allowed to live, never mind the quality of that life, are not only unrealistic, but damaging. Capitalism is an abusive relationship, and when you start believing the messages being sent to you, basic aging is suddenly a failure.

Creativity isn’t a light switch. It’s a state of being, and it’s only truly accessible when we accept it for what it is instead of trying to distort it into something more convenient. Feeding it requires taking care of all those things that we want to ignore as we focus on our goals. It is more demanding than maintaining a machine, because we are very good at ignoring the very big demands that are placed on us every day, and creativity takes a hit as a result. And if you have chronic illness, and are dealing with financial difficulties, or relationships where you are expected to be at a certain level all the time, no matter what, those stressors compound exponentially.

If you are someone who doesn’t accept. If you’re someone still asleep, thinking that you can force your way out of the situation of life with just a little more breaking of yourself for later gain, you are the problem that is killing your creativity. There’s only so much a being can take.

So how do you repair your relationship with your creativity enough to allow it to flow?

Accepting The Impossible, aka, Mindfulness

It starts with acceptance. Accepting all the shit you don’t want except. Accepting the emotions that you’re running from. It is shit to feel like a failure, and no one wants to feel those feelings for long. But in acceptance of those feelings, is also the acceptance that you weren’t given a choice.

This is life exactly as it is.

Unfair. Painful. Full of extremely unrealistic expectations from a species that is destroying the one planet it can survive on. All these demands are coming from a place of insanity, and internalizing them can only spread that madness further, and break us.

In a place of acceptance is the ability to feel again. It’s the ability to reconnect with your body and your environment. It’s the ability to reconnect your emotions to your thoughts and sensations, and to have a richer experience of being.

It’s about letting go of those expectations and demands that claim you can only do things one way: goal centric. The insistence that you should find a way to be productive while being creative.

The trap of creative productivity

There’s something funny about the concept of productivity, especially in this current world. If one were to think of a production line, productivity would be about making more things people need, faster. What does productivity currently mean when it’s being sold to us by the business self-help gurus? It’s about making money. It’s about making meaningless things, more superficial things, faster, so-called “smarter”, for the end goal of money. Where everything you do turns into a way to make money. Everything. Hey, you could write a song right now for fun… but would it sell?

It’s suffocating. Paralyzing. Until can’t do a fucking thing without having to figure out if you can make a cent off of it at the end, and they want to call that self-help. Talk about psychosis.

It’s not just art though. What do you want to do with your life? What do you want to be when you grow up (or grow older)? Will it make money? Will it be attractive to a mate? Will it make you into a worthy person deserving of love and respect? No, not in this world? Then do the thing that makes money.

Don’t dream. Don’t hope. Don’t wish to be better or to change the world — that’s not going to make money. Don’t BE unless you fit into this form. Settle. Then production line it.

Our environment decides a lot about how we feel about ourselves. It frames everything. And when you are stuck in an abusive environment, be it the ability to blame a bad job, a hurtful person, or dehumanizing societal norms, it is hard to find perspective. You’re in it, and become a product of it.

This isn’t a go live in the woods blog. We have to find balance.

These messages and distortions of us absolutely limit and cripple the creative process. We stop asking ourselves how to create, and instead focus on getting as many products out there as possible. It becomes all about the goal and not the creation. We lose the journey of exploration, the sinking into the psyche and pulling back knowledge, inspiration, emotion, pain, and reflections of being that we can share with others. Connect with others.

I’m not saying you can’t create to make money. I’m not even saying that can’t be the reason you show up every day to create. I’m in no way blind to the capitalistic hellscape I’m forced to participate in. If anything, I am still too connected and distorted by it.

What I am saying is that you cannot turn to that abusive relationship to maintain your creativity. And your creativity will be harmed because YOU will be harmed. There is no way to minimize down a being’s worth, their time, their talents, their reflections of emotions and philosophy into a production line, without inflicting great harm on a person. It is dehumanizing, and creativity cannot flourish in such a two-dimensional space.

Creativity is not a get rich quick scheme. Finding your bliss shouldn’t be one either.

Do not go into the creative field to make money, if you want to remain a creative by the end of it. Oh, we love the lie. We love to say that we can have 2 goals in a business model, the first goal to make money and the second to make the world better, or make the best product, or, I dunno, clean up the environment, etc. It doesn’t matter; the first goal will always take precedent. Always.

This is why businesses exist: to make money. Deluding yourself otherwise is bullshit. When you are participating in the act of making money, what your skills and talents are will never be as important as getting that cash at the end of the day. You will be valued by that cash, your entire sense of self slapped with pricetag of how much you are worth in this endeavor. It is not a community. It is not a lovefest between you and fans. It is a job. One that limits how you present yourself to the world to maintain that job. One that asks you to create things you might not want to create to maintain that job. One that can never truly be a reflection of you as a being, because the purpose of that job is cashflow, not self realization.

Do not turn to your job to become a better person; it cannot facilitate it. Become a better person and bring that to your job.

Or change the goal of your job, and give up trying to compromise. Maybe you’re already independently wealthy and you can do that. Maybe you’re like me, and your creativity won’t flow when you’re trying to compromise with this shit. Wonderful. Otherwise, stop drowning your creative process in a field that doesn’t reward the essence of creativity. If repetition is required to make a buck — if the production line is required for your creativity — you can’t go to work to refill the empty well. It won’t work.

Dedicating space to create

Exploring creativity outside of distorted goals is a good way to remember why one creates, and what creativity provides. Make a practice of it, a play date, a therapy session, a rest, an indulgence. Give yourself permission, and then give yourself time. Fall in love with what you do by doing something else that doesn’t have the same demands and expectations. And do not allow yourself to place demands on your practice of creativity.

What do you need? Not much.

You need a space to create. A physical space, one ideally with a clear schedule free of interruptions. And probably most importantly, you need to show up, ideally with a guilt free conscience and curious to explore.

You do not get to fail. Failure comes from a place of expectation, and creativity cannot be about expectation. It’s about exploration. It’s about feeling the process, and allowing it to be exactly what it is in the moment. Allowing yourself to be exactly who you are in that moment, the frustration, insecurity, boredom, curiosity, seeking, worried about time, lonely, in pain, etc.

You also don’t get to be bad at it. There is no expectation of a result, and therefore no way to judge if you’ve achieved that result or not.

When lost in the creative process, exploring, results meaning nothing. You can throw it out at the end if you want. You can daydream and never write a single word down. Just as long as you experience the process, whole body, and accept it all as it comes.

Creating for creativity’s sake. If you need your creativity to flow, you have to focus on the actual problem. You. You need a reset. You need a place to be, to do, without judgement, without expectation, without the noise and stress the world bombards with. You need a place to be free, so create it.

The creative struggle with my personal environment

I’ve been seeing my creative deficits since getting back into writing. It was much easier to focus on the executive dysfunction’s, partially because in some ways they’re easier to face. They’re also easier to communicate. I can say working memory, or attention span, and people can relate without asking too much from themselves.

It’s harder to communicate well in regards to — I don’t want to call it writer’s block, because it’s not. I could absolutely sit down and write. But I couldn’t feel what I was writing, and feeling is what writing is all about. And every time I would delve deep, and try to find where those feelings have gone, all I could find were feelings about chronic illness, about disability, about poverty, and about the society that has framed these things into abnormals states of being — there are millions of us with chronic illness and disability. Hundreds of millions of people are in extreme poverty, while billions are in societal poverty. It is normal!

But the world defines us into failures. Invisible. No one wants to hear about reality when they’re turning to the computer to escape reality. And the harder it was to feel, to connect with my body and my emotions, the more I internalize those distorted, frankly fucked-up messages that I was the problem. That I was abnormal. That somehow something intrinsic in me had made this the obvious end result, no matter how much I fought to get out of this pit our society keeps dark for those they don’t want to see.

So then my creativity came about in defiance of that. Still not feeling, still not accepting, still running away. Seeking ways to break myself to help escape and feel the other things — the exhaustion and frustration and failures — so I wouldn’t have to feel so broken as a whole.

A part of me saw that as long as I was physically ill, I could understand why I was failing, why I wasn’t being productive enough with my time and therefore wasn’t living up to the distorted capitalistic message. By participating in my self-destruction physically by refusing to rest, by investing all my time and energy — energy I don’t have — into getting out, I was finding a way to emotionally free myself from the abusive messaging bombarded at every single person when it comes to self-worth and how they spend their time.

I just had to keep breaking myself physically, so I wouldn’t have to hold myself up to the standard that was killing me to try to achieve.

Creativity is a sword with as many edges as you can imagine

Our creativity is a gift, that can create a door to these psychological cages we participate in building. We might have never come up with the initial message, and we certainly didn’t set the external world stakes for what happens if we disregard those messages and fail the expectations this abusive society gives us to survive. But we do participate in believing the message.

We participate in how we frame ourselves to that message, and how we think about ourselves in relation to that message. We can cage ourselves and that message, exaggerating and amplifying it, only ever comparing ourselves to that message, and calling that message “truth”.

We do this to ourselves long after the world changes. And from that mental cage, we leave no space for change.

It takes a lot of mental energy to trap oneself. It can also take a lot of creativity to keep oneself trapped, distorting any positive messages that point out that things aren’t necessarily the way we keep insisting they are. This also drains our creativity, and distorts our relationship with our creativity. It’s a skill, creating depths of emotion and sensation out of basic thoughts and words. That skill can absolutely cut us just as much as it frees others.

Letting go to be able to receive

The open palm. I don’t visualize a lot of things, but during my PTSD therapy years back, the open palm was this huge breakthrough for me. Where I realized there was no way to let anything in, no way to seek new information, new truths, new perspectives, etc, if our hand was clenched upon an absolute. As long as your holding something tight, be it an idea, belief, pain, memory, you cannot reach out to accept anything else in. One has to release it all to be open to what will come.

This includes how we see ourselves. How we see our past. How we see our journey and where we think we are on it. None of that can be re-created or reimagined if we are so tightly clenched to our preconceptions and definitions of things that are purely conceptual.

I think mindfulness mixed with art therapy is extremely healing. It helps to break down expectations, and face that we are the ones giving it value. That when we feel the worst stakes crushing down on us because we have failed to meet an expectation, we are the ones who participated in that relationship of thought and punishment.

When we do it because we lack self-awareness, it can be extremely damaging. But gaining self-awareness doesn’t mean it’s not extremely hard to let go. So there are things like a practice of art, a practice of creativity, that shows us it’s okay to let go and explore something new, and to be something — someone — different in that moment.

You don’t have to conceptualize consequences for being free. You can just be free.

Find ways to seek new sensations. I always wondered why art rarely focuses on olfactory senses, considering how memory works, how intense a simple smell can have on our emotions. There’s music, rhythms, and dancing, and moving that can unlock muscle memory and engage the nervous system.

There is the act of making visual art, finding a large canvas to move around and explore with one’s whole body, not just the eyes. Paint over it a million times — paint with dirt; it doesn’t matter. It’s the act of letting your body make a mark, to live in its environment and be a body being that’s important, not holding onto the results.

There’s telling a story, not worried about which words to use, using your whole body to tell it, possibly recording it to get the emotional cadence from the voice. Singing — one could try singing a story like an opera.

It’s about feeling, and letting art lead the way. Making art to help to connect with one’s feelings, giving them a safe outlet that’s contained for those who fear being overwhelmed by their feelings. Creating space for art can be about creating a safe space to experience feelings and sensations that one does not feel safe to have in their everyday world.

Trauma can make feeling seem dangerous. Art can provide safe space and acceptance. Ugly art, strange, distorted, raw, uncomfortable art can be so cathartic when dealing with trauma and trying to find worth in what feels worthless.

Reconnecting with the source of creativity is reconnecting with being alive

It’s so important. It is so healing. It’s a journey that never ends because creativity is what every living being is. Anything and everything you do can be creative, because it’s a part of existing as a living being.

We are not unfeeling machines that only do what we’re programmed to do. We are not inanimate objects for the background of someone else’s existence, meant to be neglected and dissapear because we don’t fit the mad conceptualizations of society. We are an amazing collections of atoms that have formed elements, cells, thoughts, will, and actions: that we exist at all is the creative force.

Returning to celebrate what it is to exist, to feel, to conceptualize, to act, is how we recharge our creativity. When we stop emulating the inanimate and the automatons, we remember what it is to truly exist.

You don’t need to buy a book for this. You don’t need to pay for a class. Although, it doesn’t mean you have to do it alone. The celebration of life can be shared, creativity flooding out, allowing us to change with our moods — allowing us to have moods — and accepting it all. Just ensure that you can do this practice with others without activating the judgemental inner self. If you feel like you need to perform, don’t trap yourself with an audience and claim it’s to help you heal. It’s not; it’s to continue harming yourself.

When one is recharged again, no longer growing dim as you’re changed by this process, you will find that your creativity flows again for those projects that just weren’t getting done before. Not only that, you find that those projects change as you return to them, becoming more interesting, more vibrant, more purposeful, because you have something to give them now. You’ve become connected to what you’re doing and have something to create, instead of mindlessly producing for some supposedly essential goal.

What is truly essential?

There’s something very sad about being asked to disconnect from the many things that tell us we’re alive, all in the name of survival through the exchange of producing meaningless things or selling our time. It’s dehumanizing. De-being-izing.

How many times has the world told us to put aside how we feel, how we think, who we are, all in the name of some supposedly greater goal of… what? Doing a job that doesn’t actually need to get done? Providing a service that doesn’t really add value to community? Replicating a trinket that’s tossed in the trash, or creating content that is unsatisfyingly consumed, leaving people hungry and empty and seeking the very thing they’re being told is inappropriate, childish, immature.

We just want to enjoy our lives while we’re living them. And unfortunately, the twisted world out there that humanity has crafted doesn’t think that’s a good idea. (Seriously, why? What’s the big fucking deal with enjoying life at any age?) The world tells us our enjoyment needs to be regulated, kept to a slim “if you’re lucky and make enough you can be rewarded with…” all so we’ll work more for those who profit off of us.

Fuck it. Give yourself permission to enjoy the moment, every moment, without giving a fuck about societal expectations to turn you into an unfeeling, unmotivated, lackluster robot. You don’t have to be something to be happy. You don’t have to know what you need to become to finally be happy in this distorted world. We are all being, this very instant, and it’s exactly enough.

Don’t become a dead product of a sleeping, unaware society. Creativity helps us wake up and remember the pure beauty of simply existing. Where we are all worthy and deserving without needing to prove anything to anyone. Where terms like failure, wrong, and mistakes are nonsensical concepts. If you don’t know how to break free, the creative practice can help show you the way. And when you bring that into everything you do, you never have to fear being disconnected from yourself again.

Gaining Fresh Perspective

I was planning on checking in some days back. Had written the whole thing out, only to end up with another anaphylactic reaction and back to the ER. By the time I was out and looking at the submit button, the moment had passed.

So much keeps changing. The hardest thing to find is perspective right now, because of how this condition works. Anaphylactic reaction is your body basically killing itself to fight off whatever set off the reaction. It means that during those moments, the chemical cascade rushing through is defining everything.

Survival to the point of self destruction. It’s everything I know about living with PTSD since small, so maybe this was the illness that my brain is most willing to rationalize, possibly even set off because of such a difficult psyche. MCAS can be triggered through trauma, through other chronic illnesses too. There’s plenty to choose from.

Things keep changing so rapidly as I start to treat this condition in a way that’s actually working. The changes are so extreme on my body. I’ve regained circulation in my arms. My fingertips, which have been giving off electric shocks since the ER, now suddenly calmed. I regained circulation in my skin. The scratches and patches of scaly skin suddenly have color to them, like washes of sepia.

My executive functioning has changed completely — I can task switch with ease all of a sudden. I’m painting detailed work because my eyes aren’t bothering me anymore. My eyes aren’t bothering me anymore. The underlying condition is there, but it’s not being set off.

I’m not obsessing over anything — I just stop, now. It’s the most bizarre thing in the world to have found the kill switch that just wasn’t there for years.

And then I’ll eat the wrong thing, or smell the wrong scent, and it all unravels…

It’s life or death heart racing, throat swelling, mouth and stomach burning, chemical cascade of doom as all my lymph nodes swell up and my skin turns pale and papery and loses sensation.

It feels like zero to near death, just like that, except it’s not. I have no proper perspective on this illness because I have been in that stage I just describe practically 24-7, for years now, and it’s not near death. It was only near death when my tongue started swelling a little bit more and my chest didn’t want to open enough to breathe. (I mean, if you want to get technical and add in the adrenal insufficiency, it was already death…)

And that new stage where I’m not an anxiety riddled, neurotic, inflamed mess? I don’t know if that’s “zero”. I don’t know if that’s my default just forever out of reach. Or if it’s the stage where things are a little better than my previous default, and there’s something even better waiting.

I have no clue where I am in this process of healing, only that I’ve managed to get out of that previous default. And that my body is also now capable of experiencing that rushing toward not breathing stage. Two extremes that, with enough perspective, might actually be dots on top of each other on a chart for how much they are alike. I don’t know.

Remembering Me

What I do know is, as the inflammation lowers, and the chemicals that impact my neurology start to fade with fewer reactions, I am slowly coming back to me. I’ve found that a lot of the neurosis, anxiety, and inflexibility in living is coming from the immune response. In so many ways. There are levels to this.

Just the other night I was defining myself by the state I was in, remembering that version from before the really bad decade of illness, who would be manic every night, hyper-focused on a project to deal with the excess of agony being felt at an emotional level over absolutely nothing. Every night since I was a teenager living in a moldy basement, that’s the level of pain I had to endure, and I was suddenly feeling it all over again.

And then I realized, oh, mast cells are more active at night, which is why the meds are taken at bedtime. They have a circadian rhythm, which is probably why not only do I naturally fall asleep around dawn, but that habit of sleep came from following those disturbing, long nights of chemical distress. My bedtime is dawn; I need to take the meds at nightfall.

I cut out eating at night, to give the mast cells in the gut nothing to react to. And I make sure to avoid anything emotional or too energetic at night so the response can’t be triggered through stress. Sure enough, no mania, no physical/emotional agony over nothing. The problematic chemicals didn’t flow because the mast cells weren’t being triggered.

My mental distress is a response to physical illness, and good fucking luck trying to go through a pysch doctor to ever get to the solution for an immune disorder.

Self care has to come from a place of understanding the self. You can’t care for what you don’t understand. What this illness did to me removed me from my sense of self, and from my sense of being in my body. I have been burning my hands for weeks — possibly longer — and not knowing it. I only started noticing once I had gotten my inflammation down long enough for sensation to return to my hands. I thought I was “over” sensitive because everything was hurting. First the nerve pain and now suddenly I could see the rash on my hands and fingers, and everything felt like pain.

Because I was in pain.

The water temperature of our facet gets too hot, and I didn’t notice when rinsing the dishes and washing the cat plates multiple times a day. Every day. I had others test the temperature to confirm it wasn’t just a lack of perspective on my part — because that’s the thing: my perspective is warped by this illness. For so long.

Perspective is something always being built, adjusted by every change, big and small. It’s never final, never stagnant… except when our minds become small and shortsighted.

It’s like washes of paint, forever transforming something into clarity or revealing a lack of it, obscuring and removing, transforming and unveiling. And in there, somewhere, is the truth, but it will always be limited by the eyes looking and the mind perceiving. It just is.

This is the texture study I couldn’t start because of the neurosis. I was able to start working on it this week, around the time of the second anaphylactic emergency. How it started looks nothing like how it is now, and this moment — this snapshot — will be nothing of what its final form will be.

My eyes have been fucked for years, and I just started to come to terms with that, only to learn, hey, the eyes have mast cells in them too. The chemical cascade of the immune response was adding inflammation and strain, exhausting my eyes until the underlying Exotropia flared. But if that immune response isn’t happening, I don’t have a migraine 24-7 anymore. This week I finally remembered what a boring old headache feels like.

Writing what you know

Part of not getting back to writing is my acknowledgment that I can’t write people when I don’t feel like a person. I have been so out of touch with living for so long now, and after the last time the mold hit and I built the cleanroom, my brain changed drastically. So completely. I still haven’t recovered. I gained enough perspective this last week to remember more of what it was like to be whole, and to see how I am far from it.

My emotions are waking back up the same way the sensation in my hands did. I’m regaining memories — while also becoming aware that I keep forgetting what month it is, what I did yesterday, if I’m near the beginning or end of the month, etc. I can’t plot a timeline of what I’ve been through, and it’s scary to become so aware of a deficit I can’t even be sure isn’t new.

I want to believe the memory issues are a side effect of the bigger anaphylactic response, but I can’t know for sure. Not without more time.

I am returning to my body, and it is jolting. Remembering and navigating all these sensations and emotions is difficult, disorienting. And then adding all that intensity into the flares of the illness is, well, extra. Because it was bad enough being in this body when it couldn’t fully feel what was happening. Now it can feel more, and it’s something I need to learn to cope with.

Everything has changed

I am not driven to do anything but heal right now. I am not driven to prove I am alive by doing things, and that’s really the raw truth of what has been pushing me to get back to living while bombarded by the constant chemical cocktail of the anaphylactic immune response. I measured being alive by being able to get back to what I was doing, because I felt chronic illness was taking me away from that. Illness had interrupted my life, something that was holding me from doing what I love… and that was all I could define it as.

I didn’t measure it through feeling, because I wasn’t feeling much of anything. So there was never a rush to feel better physically once the nerve pain in the face stopped. I ignored my pain and discomfort; that is the fucking default to disability. Every moment is about enduring until you just stop looking at it, stop acknowledging it. And it’s shitty, and I can’t claim it’s the “wrong” way to go through chronic illness, because fuck, it got me through and it was all I could literally do when my nervous system couldn’t do anymore.

I wasn’t rushing to feel better emotionally, because it was the same damn thing. What was the point of having emotions over something completely beyond my ability to control? Emotions were better invested elsewhere, except mine had numbed so much, there was little to invest.

I don’t know if my nervous system was responding to the chronic chemicals, or trying to adapt to make things less painful. Either way, it resulted in my brain — the sharp teeth — deciding everything, driving everything. And when the logic part of the brain is coping, it’s with patterns, curiosity for distractions, games that become neurosis. Every thought is essential, and it won’t stop shouting those thoughts… to help me not feel what I was going through.

Boundaries with expectation

There is no point in having expectations when your perspective is a sliver wide. I have adapted down to this illness for the majority of my life — certainly since my teens — and I don’t know what being healthy is going to look like. I don’t know what I’m going to be able to handle to control this illness and prevent it from flaring up, while also living a full life. I just know that I’m not there yet. This silence I’ve been feeling lately is both full of so much possibility, and absolutely nothing at all, and I will not know who I can become until I am them.

For now, I need to take care of myself. Which means letting go of what I’ve already let go of this week when I wasn’t paying attention. I have no expectations of results on anything in regards to writing, coding — being. I have things I must do in regards to researching this illness and navigating diet changes and supplements, and everything else is just… being. Feeling. Remembering what it is like to be a living, breathing, empathetic being that feels.

I’m looking forward to it. Looking forward to remembering what it is I was writing that I couldn’t get back to because I had forgotten this part of existing. And that’s the thing; you can’t separate a creator from their experiences and expect them to be able to write something whole.

I was fighting this, knowing that I wasn’t ready to write because I couldn’t connect with the part of me that feels my writing. So the logical brain came in and said “fuck it, do it anyways.” Because that’s what the rational does. It talks about measurements of gains and loses. Money. It talks about no one being able to see through the facade. How there is value in going through the motions in the hopes of jump starting what isn’t flowing. There are so many reasons to just “do the thing” that I completely agree with. But creativity is a whole person experience. It requires the psyche to be there, adding important context. And mine just wasn’t showing up.

Be it physical malady or psychological side effect, I couldn’t connect and get into the state to understand what I was trying to write at the level it needed to be understood. Hence I couldn’t figure out how to edit it, because I didn’t know what exactly I was trying to say in the first place. So the neurosis stepped in, hoping to find a logical answer to the wrong problem.

Faking it doesn’t work, but it feels like doing something…

I wanted to be okay. And to prove I was okay, I wanted to do all the things I couldn’t do because illness kept getting in the way. So I wrapped everything about my ideals of getting better into getting back to writing, even as I promised myself I would be gentle with myself. But I wasn’t, because I couldn’t feel the pain I was inflicting to begin with.
I just wanted to be better so desperately, that I was forever looking at the goal I needed to reach to prove it. Never at myself. Never at the hurt, the illness, the pain of being left behind in life. The goal was far less painful to focus on.

Perspective frames everything

I can only understand this because the chemicals that were bombarding my body are doing it less now. There’s no point in me beating myself up over doing the only thing my brain chemistry would allow. And now that it’s shifted, it’s still the same lesson. There’s no point getting upset that I can’t hold onto the motivation to get back to writing to the point of self destruction. I’m not that person any longer (until another flare, I suppose.)

Things will happen in the time they take to happen, and it’s exactly enough. I feel so much pity for that other version of me who was desperately trying to prove everything was okay by neurotically going through the motions, unable to get out of the trap. Unable to feel how nothing was okay, and that trying harder at what wasn’t working wasn’t ever going to solve it.

Everything has shifted drastically, from health to perspective these last weeks, and I don’t know where it’s going to balance out. But I remember myself more, am more in this form, in this life, and I am better for it. The suffocating feeling that has been following me for so long… to realize that was real, that the anxiety and feelings of dread — like death was going to slam down at any moment — was part of the chemical cascade that goes along with your mast cells over reacting all the time… There’s peace in understanding that. More so once I was able to pull the reactions back more through eliminating histamines. Even as I observe the smallest things setting off the biggest reactions in this body, I still have that feeling of peace from this fresh perspective.

I have lost a lot of time to this illness. I’m probably going to continue to lose time to this illness. But trying to solve that by breaking myself — doing more and getting nowhere — doesn’t feel like a viable option anymore. I can feel things again; I want to enjoy the experience of living. I want this change to sink in and continue softening these straining muscles and anxious, rigid expectations until it all dissolves into soft foam. I’m tired of the only thing I feel being pain and anxiety and the forever hovering exhaustion. It’s time to experience more.