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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.