7:29am August 4, 2015

My brain refuses to see delirium as 100% meaningless.

One of the things that sucks about being delirious is how little meaning things seem to have some of the time – most of the time, even.  When I’m delirious, it feels like I’m in a world of edges, never reaching any depths, just surfaces, and seeing all kinds of dizzying reflections in the surfaces, with my mind chasing them around in circles, unable to keep up or comprehend anything other than fragments of reality.  It’s a terrible, empty feeling.  And it’s weird because my head is outright cluttered, generally (unless it’s the kind of delirium where everything just fades away, instead of becoming cluttery and hallucinatory) and yet there’s nothing there.  There’s just nothing to anything.  

And after awhile that gets to me.  After awhile I start wondering, is every time that I’m delirious, time wasted, time I’ll never get back, time that’s utterly meaningless in the worst possible way?  Especially when it’s filled with hallucinations and delusions that have nothing to do with reality at all.

And yet every single time I’ve been delirious, I’ve also had moments where instead of too little meaning, suddenly everything drops out from under me, and… well in the comic I made, I represented it with a lioness, but that was a symbolic way of getting at something deeper.  So even though delirium mostly takes me as far away from reality as you can get, there’s also these weird moments where it suddenly takes me towards reality in a huge way that I can’t ignore.

But all of these things, whether they’re about taking my mind towards reality or away from it – they’re about what my mind experiences.  And reality isn’t dependent on whether I notice it at the time or not.  And I continue to exist just as much when I’m totally confused, as I do when I’m not confused at all.  That includes during times that my brain doesn’t even encode memories from.  It doesn’t mean I’m not there, or that what’s happening to me at the time doesn’t matter.

But even with all that – I just get this intense desire to make sure that these parts of my life have some kind of meaning to them, even though everything seems so meaningless so much of the time while they’re going on.  Maybe it’s because of that horrible empty meaningless feeling, that I insist on there being some kind of meaning in sight even then.  I don’t know.  I don’t even know how to say what I’m trying to say.

8 notes

3:07pm May 30, 2014

Your politics have a problem when they contradict the real-life experiences of the people they’re supposed to be about.

[Originally posted to Ballastexistenz.]

Your politics have an even bigger problem when the people they’re supposed to be about, become afraid to describe our real-life experiences, for fear of angering the echo chamber.  And when we become afraid to describe our real-life experiences, that reinforces your idea that or real-life experiences don’t actually exist.  Which reinforces the idea that you’re right.  Which makes you feel even more justified in attacking anyone who happens to contradict you for any reason at all.

I hate this.

I hate it because I am afraid to say certain things about my life.

Because I don’t know if I have the strength to handle the consequences if I do.

Because I understand, I more than understand, why the echo chambers believe as they believe.  I understand what’s at stake.  I understand why it’s so easy to believe that contradiction is a threat to your life, because in some areas, it almost, sort of, can be.

And yet I also understand what’s at stake when all of us little people on the ground aren’t allowed to talk about our lives.

And there’s more at stake there than you think.

When we can’t have a conversation.

When we can’t bring our little packages of our truth from our lives to the table, and unwrap them together, and look at them, and learn from each other, without judgement.

Then something is dying, and something has died, and something is dead.  And your entire echo chamber smells of rotting flesh.

But we are still alive.

And we still pass around our little packages to each other.

But instead of doing it in the full light of day, where everyone can see and benefit from it.

We do it furtively, at night.  We look around, make sure nobody is looking, tiptoe to the neighbor’s house, sneak in through the back door so nobody sees us coming.

We send each other packages in the mail with no return address.

We write our stories in invisible ink.  We write them in code.

You should know all about this.  This is what it was like for all marginalized people, before your movements got started.

But now, instead of just hiding from the oppressors, we are hiding from your movements.

You might want to take a really good, long look at why that is.

I once took part in a disability studies group we called Disability Studies Prometheus.  Because we were people traditionally left out of disability studies.  We were cognitively disabled, or too sick to make it to class, or other things.  We called ourselves Prometheus because he stole fire from the gods for the benefit of humanity.  We were stealing the fire of knowledge from the mainstream disability studies programs that wouldn’t let us in — our IQs too low, our behavior too wild, our bodies too unreliable for the university setting.  So we stole what we could from them, and we made the fire our own.

Don’t for a moment believe that this isn’t happening everywhere.

There are disabled people stealing fire from the mainstream disability communities.  Trans and genderless people stealing fire from the mainstream trans communities.  People of color stealing fire from the mainstream PoC communities.  Poor and working-class people stealing fire from Marxist and other anti-classism echo chambers.  LGB people stealing fire from the ivory towers that theorize about queerness all day.  Women stealing fire from mainstream feminism in all its incarnations.

More than that, there are marginalized people stealing fire from the marginalized people who have gained power.  And the ones stealing the fire don’t always stick to the communities we’ve been taught to stick to.  So you have nondisabled trans women of color stealing fire and bringing it back to cis men with profound multiple developmental disabilities, and both of them learning to tell their stories together.  And you have elderly gay white rich healthy men stealing fire and bringing it back to children of color living on cancer wards.

All around you, in the night, where you can’t see us.

We are all around you.  We are carrying little packages around.  Packages wrapped in plain, nondescript, brown paper.

Those little parcels will overturn the world.  They will overturn everything you’ve ever worked for.  And they will make it better.

Because each little package contains the story of one of us.  And it is a story untainted by ideology.  It is a story untainted by who you say we should be.  It is a story that says who we are.

And our stories.  Our stories as ourselves.  Our stories without someone to look over our shoulder and tell us that it can’t be the way it actually was.  That the way it actually was, will automatically hurt someone else.

And we put our stories together.  Even if we have to do it in the dead of night.  Even if we have to do it in code, whether low-tech ciphers or high-tech encryption.  Even if we have to send it to each other anonymously, one by one.

We are cautiously, furtively, forming real communities.  Communities that are about helping each other, not about tearing each other apart, or about finding new people to tear apart.

You can even join us… if you learn to resist your impulse to jump down people’s throats the moment we don’t comply with expectations.

But the bottom line is: We are out here.  Nothing you can say or do will stop us from carrying around our little packages, handing them out to each other, reading them, discussing them.  We are being.  We are being joyously and cautiously, furtively and with abandon, but we are being.  We are handing out manuscripts and poems, index cards with recipes on them.  We hide them, we bury them, we slip them into our bras, into the back pockets of our briefcases and false drawers in our luggage.

And then we pull them out.  And we show them to each other.  And we read them.  We read them understanding each person as an individual, without judgement except where absolutely necessary.  And we find ways of making connections.  We find ways of making communities.  Not based on shared individual traits, so much as on a shared desire to understand and protect one another.  Shared understanding, based on learning about each other.  Even the parts of each other that would seem inconvenient at first glance.  Even the parts of each other, perhaps especially those parts, where our stories seem to contradict.   Because it’s those parts that show us where we most need to grow, and understand, and learn to see each other in new ways.

But we form communities because that is what people do, when we begin to understand each other in depth.  To understand each other enough to care what happens to each other.  And when we form those communities, we do so because we’ve learned so much about each other, on a deep enough level, that we can’t avoid caring about each other.

The most important part about communities formed in this way?  They’re not about ideas.  They’re about people.  Every single community member counts, and every single community member is the reason that we have come together in the first place.  Those packages we have exchanged are our stories as people, our experiences in the world, our lives.  And everything that happens in these communities are based around that.  Not around ideologies, not around constructing the perfect set of ideas.  Not around making sure that everyone’s thoughts are pure and free from dissent.  But around making sure that each human being is valued to the fullest extent possible.  Even if our stories seem to contradict each other.  Even if our stories seem to contradict the ideologies we remember from before.

This is another way to do things.  This is already happening, right in front of you.  I am doing this.  My friends are doing this.  We are doing these things because we are being harmed so much by ideologies, that there has to be another way, there has to be a way that we can change the world and survive doing it without selling our souls.  So if this seems like a far-off utopian dream, know that it is happening all around you.  It’s happening offline, it’s happening online, it’s happening right under your feet.  I’m doing it right here, right now.

39 notes

5:19am May 19, 2013

Now I know how to run down my stamina.

Inhale stomach contents. Fuck.

I’d been doing better with stamina but I’m not up to all this.

Because not only am I out of breath.

But I have to drain my stomach and that takes time and energy.

And I did try sucking it out with the syringe. It mostly worked. But then it also got stomach stuff everywhere from the leaking part. Well not everywhere. But enough places I had to do repairs to some stuff and that took more time and energy. I did wrap it in a rubber glove and wrap toilet paper around that and that meant it didn’t get on my skin, but it did get all over the tube. I’m not sure the silicone tape I ordered will fix this kind of leak.

So I took my oxygen level because I was way out of breath after that. And my oxygen is borderline low. Which I expected. But the thing also takes my pulse. Which was 125. Which explains the out of breath more than the oxygen level did. Because my oxygen level is frequently that low anyway.

So I put the oxygen back on. Once I catch my breath I might move it up to three liters because I think this may just be the kind of situation that warrants that. That’s the maximum I’m allowed to take right now. Well they said I could take more, but if I need more, I need to also call a doctor right away because something’s wrong.

Fey was running around going wrowl, wrowl, wrowwweeeeowwwwl.

But now she’s curled up on my arm.

And you know that’s still wonderful even if my Iungs hurt like hell and my breath tastes like bile and acid combined. Disgusting bitter sour taste. But I’ve done this before I’m used to that. I just hope I live through it is all.

(Note I’m going to discuss death and my feelings about it in detail. Including my wishes for after I die, should it happen. So if that’s a problem to you, don’t read further.)

Already making my peace with if I don’t, though. You have to do that, every time, or you go absolutely crazy. Once I realize it’s okay if I die, I can relax a bit, and I need to relax if I’m going to get the best chance of living. If I’m too stressy that messes up my chances of recovery.

So in order to get the best chances of living you have to accept you could die. And then once you’ve accepted that, you can move on and do practical stuff without worry in the background.

Plus if I were upset about dying. Then if I really did die. I’d spend my last time on earth stressed out and miserable. And that would be bad for me and everyone around me.

Fey has already curled around my arm. Is smelling my breath. Purring loudly. I wonder if it’s a healing purr. Cats purring aids in their own healing, so I imagine having a cat purring on top of me helps. Sometimes she purrs really loud when she’s concerned about my health. And I wonder at those times if that’s what she’s doing. Consciously or instinctively.

Can’t stop coughing. Now it’s not getting the acid out of my lungs. It’s just irritated lungs. Already probably doing their irritated thing. Combined with their bronchiectasis thing. Which is to produce crap loads of phlegm. Which the bronchiectasis makes hard to clear. Which means I’m already in danger of puking from the amount of coughing I’m doing. And I can’t puke or I put myself in more danger.

I’ve weighed whether or not to write out all of what I’m thinking. Like in this post. But I’ve decided to do so. Because my tumblr has always been where I can be myself, including the parts of me I didn’t used to feel like I could do in public. I’m not trying to worry anyone talking about these things. But this is about as real as it gets. And I don’t want to pretend it’s not happening. Especially because if I get sick enough, I might not be able to explain everything later.

I hope I don’t get too sick though. I don’t like delirium. And I don’t like being so low on spoons that I can’t type or move in bed. And I don’t like hospitals. And I want to be around a lot longer than this.

So hopefully I can just take a bunch of antibiotics and get well like happens sometimes. But I also need to get some answers as to what’s going on with my stomach. And I need to possibly attach a bag to my g tube overnight. And other stuff. Because this isn’t okay, and there have to be ways to cut down the risk even further. Once every couple of months is better than a couple of times a week, but it’s still dangerous as hell.

I am glad I didn’t put off writing about death again. I knew this could happen any time and it’s better to have that explanation out there. Of what it’s like when this happens. And what having this happen over and over again has done to my outlook on life. And other stuff like that. That way I didn’t have to explain what I meant in my last post when I referred to precarious health. Things like that.

I’m pretty sure I’m getting enough oxygen but I still feel out of breath. And it hurts to breathe. And my lungs feel weird, not just painful, but weird.

I wonder if I should get someone to come out here, just so someone knows what happened. All I have to do is hit a button and they will come out. And then we can decide what to do from here. Whether it’s worth my while getting my lungs x rayed, or whether I can just get my antibiotics in the morning.

A lung x ray isn’t always a good thing this early on in an aspiration. And the ER would wear me out more than I’m already worn out. The reason a lung x ray isn’t always good, is that it takes days sometimes for the problems to show up on x ray. By that time you’re long past needing antibiotics. And if you have bronchiectasis, the thing you do is always get antibiotics right away any time you aspirate. Because to do otherwise is just asking for pneumonia.

I was so relieved once when a doctor told that to me.

Like I was at the urgent care clinic. And she walked in. I told her I have bronchiectasis and I just aspirated stomach contents. And she said okay I’ll write a prescription for antibiotics.

And I’m not used to that. So I was like… Don’t you need to x ray me?

And she explained the above. And it was kind of funny because I was the one pushing for tests and the doctor was the one saying no just get antibiotics now you need them now not after the tests come back, and the tests won’t be useful yet necessarily anyway, and etc.

And after that I set up a standing order where all I have to do is call my doc and they write a script for antibiotics.

I’ve had to use that standing order way way way more than I ever expected.

Gastroparesis plus bronchiectasis just fucking sucks donkey balls sometimes.

But just in case I die I’m going to make every moment count. I’m going to notice every good thing and I’m going to bask in it. I am going to love Fey and Anne and Laura and my parents and everyone else I know. I am going to try to be as decent to people as I possibly can, and do as much for other people as I can manage.

This isn’t some kind of bargaining thing. It’s a renewed reminder how short life can be and that I’m not going to waste any time. Because like I said. I could aspirate any time. I could aspirate tonight. And you can’t predict ahead of time if you’ll live or die, when you aspirate. And I did aspirate. And I’m not going to waste any time, whether I die tomorrow or years from now, whether it’s aspiration or something else. Because even with my heightened awareness of not having all the time in the world. Even with that awareness, there’s being aware of it and then there’s having it shoved in my face. And I just had it shoved in my face. Or maybe in my lungs.

Anyway, what’s always struck me at times like this is love. That love is the most important thing. Not the emotion. But the property of the world. The one that seems to be embedded at the deepest levels of existence. The one that is an ethical thing. The one that means giving a shit what happens to other people, doing your best to be good to people, to do the right thing. And that can’t ever be truly expressed in words. It doesn’t mean being passive and sweet and saccharine to everyone (in fact that can be the opposite of love, often – and love doesn’t mean not getting angry, either), but it does mean doing right by people.

That’s what’s important. And it hits me over the head every time I aspirate and am reminded how short life can be.

I do at first worry about whether I did everything I needed to do. Whether I got my will written, which I haven’t. I need to. Whether I got my passwords written down so Anne can get into all my accounts everywhere. Whether all my affairs are in order, that kind of thing.

But then after those thoughts have settled down. I always wonder about who I have been. Whether I’ve been good to people. Whether I’ve done everything I could for people. Whether I’ve noticed all the beauty in the world. Whether I’ve loved. Whether I’ve lived my life from inside of love as much as possible. Whether I’ve been as decent a human being as I can manage to be. That’s what really matters.

Dave Hingsburger was right. When faced by your possible death, you don’t worry so much about what you’ve done, you worry far more about who you’ve been. Because you may not get a second chance – nobody knows what happens after you die, after all.

I do think there’s something after death but I don’t think it’s heaven or hell. Because I think I’ve interacted with animals just after their death (and I think I wasn’t imagining it because the people around me perceived the exact same things). But I am not sure you actually stick around as you for very long. I think it may be more like the spiritual version of what happens to your physical body. Everything that made you yourself, goes back into the rest of the world to become part of everything else. So in a way you’re still there, but you’re not you anymore – just like parts of your body turn into fuel to help other organisms live. I think if you try really hard it may be possible to resist that process and stay you a little while longer, but I don’t think that’s the best thing to do, it doesn’t lead anywhere good. You have to be able to trust that the best thing you could possibly do for yourself and the rest of the world is to dissipate and lose yourself.

And in another way you’re always there no matter what. Because if you look at things from outside of time, everything that has ever happened is still happening – at that point in time. Pardon my difficulty with verb tenses. And I think looking at things from inside of time is unavoidable to our minds to some extent, because we are part of a kind of matter that is bound to time. But that there is an outside of time, still.

I don’t expect anyone else to share these beliefs, but they are my beliefs.

I’ve already written out what I want to happen physically after I die, too. That part is already in my living will. Which is kind of weird. It’s a “living” will, but it’s got stuff about funeral arrangements. Anyway, I want most of my ashes scattered or buried as close to the Mother Tree as you can possibly get. The rest can be kept by Anne and Laura and possibly other loved ones, to use as they see fit – urns, necklaces, whatever strikes their fancy.

If it existed, I’d want to be composted the way the book _Stiff_ said someone in Sweden was working on, and then have that buried near the base of the Mother Tree or, failing that, in the surrounding forest in Redwood Terrace, California. But barring that it will have to be ashes.

I’d prefer burial of at least some of the ashes, to scattering, because I’d like them to go back to the soil in that particular redwood forest. Because I have a strong connection to that place, and the forest floor there has particular meaning to me. But that may not be possible, so scattering may have to do. And it has to at least be in Redwood Terrace. And Anne should pick the spot if the Mother Tree is impossible for some reason. (Shane knows where the Mother Tree is, and lives closest to it.)

As Laura put it when she heard my plans, “Oh, so you want to be a redwood tree when you grow up.” :-)

And honestly. Once I get over all the worry. I find the whole idea beautiful. The idea of my remains becoming part of the carbon cycle. The idea of my spirit, for lack of a better word, becoming part of the rest of the world in its own way too – if that’s what happens, but I am pretty sure it is. I think Rowling may have been more right than she realized, when she said the happiest people don’t become ghosts, because they’re more willing to allow their being to dissipate and move on. Yes I know she’s saying that about a fantasy world, but I suspect it’s true in the real world, if long term ghosts exist at all.

I have only perceived them immediately after their death. Not seen them visibly, but seen things vividly in my mind’s eye that I was not expecting, and felt them, while other people “saw” and felt something almost identical. I’m not capable of imagining things up that vividly, especially given that I am terrible at visualization. So I have to think it’s possible that we were seeing something genuine. But within a short time – hours or days – they dissipated.

What struck me every time was that it wasn’t scary. No. It was more than not scary. Fear was impossible. Literally not possible. And there was light everywhere. Not visibly, but in my head. Like the cleanest light possible. And I’d see in my head, the animal, only (sometimes) made out of light itself. In one case, the cat seemed to try to convey to me and another person present that she was okay, she really seemed to want us to know that she was okay. And neither of us were expecting it, I didn’t even believe in ghosts.

I’ve had a few instances like that, and it’s made me believe that ghosts are at least possible. Especially given that in most instances, someone else perceived what I perceived. It makes me think of Harry Potter again. Where Harry asked if something was happening in his head. And Dumbledore told him of course it was in his head, but why on earth did that mean it wasn’t real? It was like that. Me and another person (different people in each case) would perceive something, at the same time, in our heads. But since it was mutual, we had to conclude that it was at least possible that we were perceiving something real, that our minds were reacting to the presence of something or another.

From private conversations I’ve had with a huge number of people, it seems like experiences like that are extremely common. But there are many cultural taboos about it, so most of us don’t admit it in public. We are afraid of being considered crazy. In fact, it was experiences like this that made me wonder whether I really was psychotic, for awhile. But I’ve talked to a wide variety of people who are definitely not psychotic, and it seems to be incredibly common. Just also incredibly not talked about. I wouldn’t even be shocked if most people experience things like this. And in my experience, autistic people were far more likely to be sort of… unable to pretend to themselves that they were imagining things if they perceived anything like this. Whereas a lot of nonautistic people seemed better at shutting out their awareness of it.

But both autistic and nonautistic people experienced these things in such large numbers that it seems to be more common for people to experience things like this, than it is for people not to. So at minimum this is a common human perception. And at maximum it’s a real thing. I suspect that there is something real that we are perceiving. I suspect that because whenever I’ve actually been around someone else who perceived it, we perceived such similar things. Whether what we perceived was exactly what was happening, I don’t know, but I pretty firmly believe we were perceiving something.

I don’t really mind if there’s nothing after death, though. Because I’ve still had a life before death. And nothingness isn’t that scary to me. If there’s nothing, then there’s nothing. It’s weird to think about suddenly disappearing and never reappearing. When I’ve been out under anesthetic, that’s hard enough to fathom. It’s such a strange experience to not be there, so much weirder than sleep. Because at least with sleep you feel something. With general anesthesia there’s nothing, and no memory of anything, and it’s weird. Just like seizures are weird that way too. But with a death where there’s nothing afterwards, then there’s no waking up to further ponder the experience of nothingness. There’s just nothingness. And that’s not something I can imagine. I can believe it might be true, but I can’t imagine the experience itself.

Even in my own idea about what probably happens after death, though, you’re not around as you forever. You might stick around for minutes, hours, days, longer if you stretch it in unhealthy ways. But then you dissipate and you aren’t necessarily you anymore. So that’s still going into a state where you probably won’t be having any new experiences, after a certain point. Or if you are, you’d be so changed…

It’s such a strange thing to think about. The sheer nothingness of it. Not scary exactly, just so weird I can’t even imagine.

But I also think that my view of what happens may be incomplete. Because identity doesn’t work the way most of us think it does. Experience is a strange thing. Much stranger than most people are even aware of, much less willing to imagine. It may be that after I die, something of me will experience things. Just not as me. I don’t mean reincarnation. I mean something far stranger and harder to put into words. I don’t even think English has words. I think people put a lot of effort into seeing themselves as separated from the rest of the world in ways that aren’t true. And so, things not being as separate as they seem, who knows what identity and experience do after death. There’s a lot about the world that nobody talks about because there’s so much cultural baggage that people stack on top of it until they aren’t even able to try and look at what may be going on underneath. And what, if anything, happens after death may be one of those things – different cultures and religions and lack of religions have specific ideas, and what’s there may be different than all of them for all we know.

What I do know is that it’s important not to be scared. Because if I live my life afraid of death, then I’m also afraid to live. And if I’m sitting there scared all the time. Then if I do die. Then I’ll have wasted all my remaining time being afraid of everything, instead of experiencing life as fully as possible. Well the question isn’t whether I die, it’s when I die. And if that’s next week, or next half a century, this advice still applies. It’s just a little more urgent advice if death is near.

It seems important to experience everything. To actually be there, not halfway tuned out thinking about something else. To love. To do right by people, to the best of my ability. I have to remember what kind of person I want to be, or no matter when I die, I’ll regret that. And I have to avoid becoming complacent the way I see happening with people around me sometimes. Because they assume I’ll always get through these aspirations and infections. And I might. It might be something else that gets me in the end, a long time from now. But it could also be this time. Or the next time. Or the time after that. And it’s best not to forget that.

Damn how am I going to get antibiotics on a weekend. Sounds like I might have to eventually go to the ER or urgent care anyway. I will talk to Laura. She’ll know what to do. I hope. Maybe I can wait a day, but that sounds like a bad idea in a big way.

So now I’m going to hit the button and report to someone what is going on, so at least I’ll have that.

4 notes

2:04am May 13, 2013

Chronic illness has not been a wholly bad experience.

But I am at a loss as to how to explain that properly. In a social world where people see health as the same thing as happiness and virtue, it’s very hard to even talk about this. I don’t think the language has words for all the experiences I wish I could describe. But I’m going to try, because I’m determined to talk about this, because I know I can’t be alone in either my good or my bad experiences with chronic illness.

I also want to be clear that nobody is forcing me to say this. In fact, if anything, I get the sense many people would rather I didn’t. For good reason: People with chronic illness are always hearing all kinds of ridiculous platitudes about how we should feel about our bodies. It’s easy to fear that this will just be another platitude, another description of how healthy people think we should feel. But it’s not. Nobody forced me to say this. Most healthy people can’t even imagine the things I’m going to try to talk about, let alone pressure anyone to feel that way. And I’m not saying anyone else ought to feel like this. I just know that lots of people do, and we don’t always know how to put words on it.

Part of it has to do with my connection to my body. When I am at my most connected to my body, I am usually happiest, even when my body is feeling terrible. It took me a long time to figure this out. My impulse is always to disconnect, shut off, go away. But I’m never truly comfortable again until I’m back in the warm brown sensation of feeling completely within my body.

And when I feel wonderful and at home in my body like that. All the sensations of my illness aren’t gone. In fact, they can’t be differentiated from all the other sensations in my body. You can’t chop parts of my body off and say, this part is ill, that part is normal. My whole body is everything that it is, which includes illness. You can’t separate it from me, like it’s an add-on to who I am.

You can’t even go back to a time without chronic illness. Because I was born with a lot of mine. And other ones seem to have been in my genes, inside me, waiting to become visible.

So when I look to who I am on the deepest physical levels — and I don’t believe in the stuff where I’m a disembodied mind and my body is just a piece of meaningless trash that I have to fight against, I feel icky even writing about that here — illness is there. It can’t be separated out from the rest of me. It’s woven in, down deep where nothing can get at it and tease out the “good” parts from the “bad”. And I wouldn’t want to do that. It’s written into everything I am, in its own way.

Don’t get me wrong, I’ve experienced the bad things as much as anyone else. The endless nausea, and the vomiting that often results. The pain that has never gone away for a day in my life. Breathing and breathing but never feeling like I am getting enough air the way I used to. Waking up in the middle of the night unable to breathe, coughing up stomach acid and bile, wondering if this will be my last day on earth. Losing the ability to eat by mouth, presumably forever. Long stretches of delirium, alone, in pain, in hospital rooms. Wondering if I’ll make it to forty. Or hell, thirty-five.

To many people, that’s the only side of chronic illness, a uniformly terrible thing that you can easily separate from the rest of you. I don’t know why I can’t do that, but I can’t. And my instinct tells me that neither can a lot of people, who never speak up because they don’t have the words, or because they are afraid of offending someone.

It’s not just that it is deeply embedded in who I am, either. It’s that illness has a depth all its own. Just like every other part of the world, every other part of ourselves, it has depths that healthy people are totally unaware of. Hidden depths, interesting depths, impossible to explain depths.

And with those depths come a kind of meaning. I hear all the time that people who find meaning in our illness do so because of a defense mechanism. That we have an emotional need to find something useful there, so we do, even if there’s nothing. That may be true of some people. But for me, the meaning to be found in illness is not some kind of sophisticated denial mechanism that I use to avoid handling how much my life sucks. It’s much more than that. It’s independent of my other feelings. It’s just there, the same way the bad parts are just there. Odd how it’s easy to understand that some parts of chronic illness just suck, but harder to swallow that other parts just have meaning. So don’t even think of telling me that I’m just romanticizing an awful situation. Just because your experience of illness is only the bad side, doesn’t mean everyone’s experience is the same.

Like the depth, the many layers of meaning are not easy to put into words. It has something to do with my way of seeing the world. A way that is deepened, not destroyed, by an experience of pain. Some days pain is just pain. It just makes me miserable. Other days, the pain levels out and creates joy.

One night, I was lying in bed, in absolute agony from trigeminal neuralgia and other neuropathic pain. I fell asleep. I knew in the dream that I was asleep, and I was in terrible pain. But in the dream, I felt no pain. The sky was a deep, vibrant blue that you only see some days, after sunset or before dawn. I explored a city on foot, feeling no pain, no weakness, no nausea, no discomfort at all. Going into buildings and out of them again. Looking at the sky, and the ocean. Everything was silent. My mind was silent, the pain was silent, the world was so silent and expectant that you could hear more than you ever could with noise. And the whole time, I knew that I was being given a break from that terrible pain. I knew that I would wake up, still in pain. But I knew that I would wake up refreshed, and able to handle the pain.

When I did wake up, all of that came true. And instead of feeling the pain as wholly negative, the pain carried some of the joy of the dream along with it. It was as if the pain had hollowed out a place deep within me where life and joy could live. In a way that they couldn’t, if the pain had never been there.

I felt similar this morning, but in a way that was more subtle. At around five in the morning, I was curled up with Fey, and a book. I could smell the fur around Fey’s ears and feel the warmth of her love. And as always, I could sense the connection that exists between me and a close friend of mine who lives thousands of miles away. And everything in that moment was beautiful and meaningful. And it hit me that the beauty and meaning wouldn’t be as complete if I hadn’t been through all the recent aspirations and infections, the knowledge that my life could be taken away at any moment.

And that’s just one of a whole spectrum of ways that illness affects how I see the world in a good way. There’s even more. But none of it is easy to put your finger on, so I’ve just tried to give you a glimpse.

The meaning I find isn’t just within myself, either. If it was, it wouldn’t be very meaningful, or very beautiful, or anything else good. It’s true that illness can sometimes make people unable to see past their own selves. Sometimes in a way that’s understandable under the circumstances, other times in a way that’s just plain ugly. But it can also help people see past ourselves, into the lives and needs of other people. And anything that helps anyone avoid self-absorption can’t be entirely meaningless or terrible. Anything that lets people get past their ego can’t be one hundred percent terrible or meaningless.

George MacDonald wrote an interesting book, “At The Back of the North Wind”. It’s almost like a fairy tale. It is eerie, beautiful, haunting, and meaningful. And he wrote it to come to terms with the death of his own son. It rarely mentions illness directly, and yet the North Wind strongly reminds me of that side of illness that nobody talks about. The side that is powerful, and terrifying, but also deep and beautiful in ways I don’t have words for. Yeah, the book has elements that a lot of modern readers would roll their eyes at. But that element rings true for me in a way that few modern books do. When I explored that city in my dream, it was just like the boy’s travels with the North Wind. And there’s an unspoken, unspeakable beauty beneath the surface that I see all the time in my regular life, connected in some way with illness.

Another thing about illness that can’t be overlooked, but everyone does seem to overlook it:

When I’m severely ill. Severely ill enough that by that point I’m often hospitalized or even delirious. There’s a way that the illness tears down my defenses against many of the bad things in the world. And they swarm through me as if I am made of Swiss cheese.

But.

At the same time that my defenses are down against the bad things of the world, my defenses are also down against the good things of the world. Every day, throughout our lives, people put up all kinds of defenses against the best, deepest, most important parts of the world. We put up such good defenses that most of us can go through life believing that those good things aren’t there, or are kept at a “safe” distance. (Why “safe”? Because our egos have no true defense against the deepest parts of the world, and they know it.)

But when I am seriously ill. When I’ve exhausted my energy reserves. Not just the way many ill people are exhausted by the end of the day. But as in, the energy reserves that allow us to keep on living. When those reserves start going down far enough to be scary to me and anyone else who wants me alive.

Then I have no defense against the good parts of the world.

And the good parts of the world flood through me. And they give me a glimpse of the ultimate depth and the ultimate beauty and the ultimate meaning and things there are not and will never be, can never be, words for. And they change me, for the better. Those changes are the most important part. The part that makes this, any of what I’m discussing at all, actually deep or meaningful, and not just an exercise in aesthetics or something.

That sort of thing doesn’t happen every time I have a medical crisis. And it never happens on command. But it happens often enough to show it’s no coincidence. The changes are long lasting and deep enough to show me it’s not an artifact of delirium, even if it happens while delirious. And here and there, when I look for it, I find plenty of evidence that things like this have happened to other people during severe illnesses, whether acute or chronic. It’s not something people talk about much anymore, but it’s out there, and it’s not a bad thing. Severe enough illness can make you vulnerable to reality.

Hopefully, even if you’ve experienced none of these things, I’ve at least convinced you that I have. That all these good parts about chronic illness aren’t platitudes I thought up in order to “think more positive” (eurrrrgh), but rather real, flesh and blood experiences I’ve had that contradict the common idea that chronic illness is nothing but neverending tragedy and heartache. Because they are. I can no longer get rid of these experiences than I can get rid of the good ones.

And I recently decided that it’s very important I begin writing about these things. Because not many people are writing about them. And that usually signals to me a need to put into words something that many people experience (or experience something similar), but have no words for. Because there’s no way that I, or my experiences, can be that unique.

I also know that even people who have good experiences may not be willing to admit them. Nearly all chronically ill people have been taught at some point, the toxic and false idea that there is a good side to being chronically ill — and that is getting out of the responsibilities and demands of ordinary life — and that deep down, we all desire that, and that’s why we stay ill. And that if we thought hard enough, we would find our areas of so-called “secondary gain”, and get well again once we admitted to ourselves what we were doing. Even many doctors believe that bullshit.

And after being exposed to that kind of crap on a regular basis, it can be scary to admit that we have any positive experiences associated with illness. I once read a review of a book by a terminally ill man, who described himself as enjoying being taken care of. The reviewer went on to basically blame the guy for dying, so that he could be helpless and taken care of. I wish I was making it up.

When ill and disabled people are hearing that all the time, it’s no wonder we get nervous at the idea that there’s anything good about getting ill. We often fear that if we admit anything positive, it would mean admitting that we did it to ourselves, or that we could get out of it if we only wanted to badly enough, distanced ourselves enough from the good parts of illness.

But there are good parts of illness, for many of us. They just aren’t in any of the places that healthy people tend to think. They go much deeper down, and are much less about our own egos, than the “you chose your own illness” jerks could even imagine. And admitting them isn’t admitting that we chose this. Hiding from them won’t make us less ill.

For those of us who experience the good side of chronic illness, that side of things is just there. It just happens to exist. That’s all there is to it. It’s hard to see, hard to touch, and hard for anyone outside the experience to imagine. But it’s there nonetheless. And I’m talking about it, because not many other people are. And that’s what I do.

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