In Life’s name and for Life’s sake, I assert that I will employ the Art which is its gift in Life’s service alone, rejecting all other usages. I will guard growth and ease pain. I will fight to preserve what grows and lives well in its own way; and I will change no object or creature unless its growth and life, or that of the system of which it is part, are threatened. To these ends, in the practice of my Art, I will put aside fear for courage, and death for life, when it is right to do so — till Universe’s end.Wizard’s Oath from Diane Duane’s Young Wizards and Feline Wizards series.
This is a Friday topic about facing fear.
Many people who know me have compared me to Neville Longbottom. In that, like me, he started out timid and afraid of everything. But by the end of the series, he’s faced up to so many of his fears that he commits feats of extreme courage. Including deliberately facing the Cruciatus Curse, a spell that had been used in the past to torture Neville’s parents until they couldn’t function anymore. He faces up to his worst fears and then some to protect other children — and adults, but especially other schoolkids — from Voldemort’s followers.
Gryffindors like Neville are known for their courage, but people from any House can be courageous. And I’d argue that the different Houses emphasize courage in different ways, and different aspects of courage, although any kid from any House can of course have any kind of courage for any reason. The kind of courage Neville shows — putting himself into terrifying situations in order to protect others — is both emphasized in Gryffindor and Hufflepuff. Like Neville, I have a lot of traits of both Gryffindor and Hufflepuff and I do identify a lot with his character.
Part of all these new blogging ideas have to do with facing my own fears. So having one of the Friday topics be facing fear makes sense.
Mind you, fear isn’t bad in and of itself. But there’s allowing fear to guide you by giving you information, and then there’s having your entire life dominated by fear. And I don’t want my entire life dominated by fear.
I have a friend who says she chooses one new brave thing to do every day, and then does it. That would sound like an exercise from a self-help book without the background knowledge that my friend came out as bisexual and soon thereafter as a trans woman in the wake of the Orlando shootings. She isn’t screwing around, she knows what’s at stake, and she knows she wants to put herself out there both for her own sake and that of others. She doesn’t want to live her life in hiding. I had a similar reaction to those shootings, like I wanted to be more visible despite the danger. For many reasons, too complicated to explain if you don’t understand already.
When my father was dying of cancer, he said that dying of cancer was his worst fear. We talked about dealing with fear of death and dying. And I said that as far as I could tell, the only thing to make a difference to deal with that kind of fear is to find the deepest form of love — a property of the universe, not an emotion, in this case — and follow it wherever it goes.
My father took that advice and ran so far with it that my only fear is I’ll never be able to live up to his example. He died well, and bravely, and with love.
I have a few friends whose courage has been making national news with everything ADAPT is doing to try to secure rights for disabled people in America right now. It makes me proud to even be able to think to myself, “I know these heroes personally…” and not have it be some sort of inspiration porn thing.
Another friend graduated from college as a nonspeaking person with developmental disabilities and made a movie about it. Which anyone who’s been even just the first in their family to go to college knows is gruelingly difficult and full of new fears to face every day.
Honestly one of my fears is that I’ll never be as brave as so many of my friends and family and people I’ve known. I know a lot of really tough-as-nails people. But suffice to say I know a lot of really brave people and I hope it rubs off on me Neville-style. Unlike Neville I think I’m genuinely a Hufflepuff deep down, but courage isn’t just a Gryffindor thing.
But at any rate, this is the Friday topic for anything regarding fear, courage, facing fears, and things of that nature. Hopefully I’ll eventually have things to fill it up with.
My friend suggested that writing about my fears is itself a brave thing to do that can benefit other people. I think she is probably right.
This is the kind of vulnerability I have trouble doing well. If I give you an explanation of all the details, it’ll mean I won’t have to actually post the post itself. So — a friend told me, and I agree, that a really good post to get me started blogging as myself again, would be this: To think of everything I’m afraid of, and write about that. Even if it’s only two paragraphs. If I manage that — then maybe I’ll explain. But not before, or I’ll never, ever get around to writing about my fears.
It’s hard to know where to begin. So many directions. Maybe start small, and easy, and manageable, and keep coming back to this.
Not that there’s anything small, easy, and manageable about fear. Whether the fear is rational or irrational.
Here’s one that seems irrational to me.
I’m afraid of my own medical conditions.
But not all of them. Only some of them. And I don’t always know what makes the difference.
I am not afraid of any of them all of the time, and I am only afraid of some of them, some of the time.
But here’s a couple that keep coming back to haunt me:
- Congenital myasthenic syndrome1
- Temporal lobe epilepsy2
I fear these things in many ways and on many levels.
For instance, I fear them both intellectually. Meaning — I’m afraid to do research on them. The fear is intense. So intense that when I was first diagnosed with CMS, I could not read about it no matter how curious I was.
I can give an example from right now.
I was pasting some basic information about these two conditions into my footnotes, to keep them separate from what I was writing.
And I saw a piece of information I’d not encountered before, or that if I encountered it, it wasn’t put in quite this certain way. Here’s what they said:
Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).
And it feels like being zapped throughout my body, or splashed with cold water, or something else really unpleasant, every time I read something like this. Every time I read something that is so much like me.
And no this has nothing to do with how long I’ve known. I have only known about CMS for a relatively short time. But temporal lobe epilepsy was the first tentative diagnosis explored by the first neurologist who ever saw me — I was 12 or 13. People were constantly talking about TLE around me my entire childhood after that. It’s not like I missed the fact I have TLE the same way I missed the fact I have CMS (which my type could not even be diagnosed during my chlldhood. I didn’t always receive the correct treatment for TLE but even people who thought I didn’t have it never took the diagnosis off the table because it was so obvious.
But I felt the exact same way.
The exact same way.
When I found out that TLE, especially can result in someone who starts out without an intellectual disability and has one by adulthood… that zap felt like a million volts of electricity going off and then a strong urge to hide under something.
And I don’t mean I’m ashamed of any cognitive or intellectual disability I may or may not have. I just mean that I’ve known for a long time, from just putting two and two together, that it’s only an accident that I’m not officially diagnosed with an intellectual disability. (This is putting aside whether the category even makes sense to me. I can’t both write about this, and use words that reflect my experiences, at the same time. Sorry. So I’m using other people’s words and ideas, they don’t necessarily reflect how I view the world. If that makes no sense to you, deal with it — people sometimes seem to want me to walk them through my brain holding their hands to guide them, and I can’t always do that.)
And I’ve known that it’s quite likely that shifts in my cognitive abilities have made me more, diagnosable for lack of a better word, as I aged towards the various cutoffs. But I didn’t know there were many, many papers on the existence of ID and other cognitive impairments in older children and adults with TLE who didn’t fit such categories as younger children. Because TLE can cause both ongoing processing problems from the seizures themselves (just imagine having your experiences constantly interrupted by everything from lost time to random emotions that don’t seem to fit anything you ought to be feeling to… lots of things), and changes to the brain that stick around even between seizures.
In my case, by the way, my sense of time is heavily affected, my memory is heavily affected, and I suspect TLE being behind a good deal of fluctuations in my abilities.
My second mom says she’s struck, living with me, by the degree of my time problems, memory issues, and visual processing impairments. She knew about them before, but I’ve been here a long time and she’s getting to watch me 24/7 whether she wants to see all this or not. What she sees scares both of us in various ways, I think.
Visual processing issues, by the way, are another disability-related fear that I ought to write a post on sometime. It’s an entirely different fear for entirely different reasons — the fear of the pushback I would get for using the equipment I need to successfully navigate the world the best I possibly can. To the point I won’t get the equipment even though I am nearly positive I would easily qualify, as are other people who know me.
So there’s this thing about learning about certain disabilities I have that utterly and completely scares the bejeezus out of me sometimes.
As I said — not all disabilities, medical conditions, and whatnot strike me this way. Most don’t.
But when they do.
It really feels like they strike me. Like something is hitting me over the head, or zapping me, or splashing cold water in my face, or doing something else sudden and unpleasant.
And there’s degrees Like, the thing about apnea zinged me a little (I do have apnea, and in particular that little line about turning blue reminded me of a time an LNA walked in on me while I was in bed but awake, stared at my face, looked utterly terrified, jumped a mile when I moved, and then explained to me that my face was blue when she walked in and she thought I might be dead, and there’ve been other times people say I’ve looked blue or grey). but the thing about ID and TLE felt like a full-body jolt that made me want to hide long-term.
And yes — it scares me to tell you this. It scares me to talk about fear in public. But I trust the friend who told me this was a good idea.
And hopefully I’ll write more, because this is only one kind of fear, and I haven’t even covered it as thoroughly as I’d like.
I want to write about another kind of fear related to seizures, something closer to home than this intellectual fear, something about things I keep semi-secret some of the time. Like how much of my life is spent in states where my conscious memory is resetting itself so thoroughly that I can barely look oriented let alone be oriented.
It’s like waking up to a new life — way too frequently — and I want to write about that.
But I’m working up to it. An intellectual fear, no matter how intense and irrational, is still easier to write about than some of the other kinds of fear I have. This is a fear of information. Or at least, information is the trigger.
But there are much more gut-level fears I have about TLE in particular, than just finding out that it has thus-and-such effect on such-and-such other condition in this-and-that ways. It’s the actual experiences of it that scare me, and if I’m looking at disability-related fears that’d be where I went next probably.
There’s also a fear in between the two types… like when I finally find a journal article about someone else with a missense AGRN mutation, only to see a little boy in black and white photos with his eyes blocked out and postures that look like mine or an exaggerated version of mine and… sheer terror and I want to run, and understand I am not afraid of the boy, I am afraid of everything that kind of picture represents about his life and mine, all the stories of public stripping from people my age and older, and… and… and… yeah, that’s its own kind of terror. But it’s also the shock of recognition, the sense of shared experience, and the fear of what he and I have in common resulting in being treated horribly for either him, me, or both, now or in the future or the past or sometime (don’t get me started on time again).
Who knows what I’ll actually get written. But I got this written. And that’s something. No, that’s a lot. I want to write about things that are authentic to my life, not just things held at arm’s length where it’s easy to examine them. And things that are just human being things. People things. Relatable things. Like fear, I guess.
Because I do spend a lot of my time rather terrified of lots of things. And so do lots of other people. And maybe being open about it can give us all more courage.
The reason for these footnotes is to keep huge amount of information out of the post so I can go ahead and write what I’m trying to write without getting distracted by, for instance, medical details.
Congenital myasthenic syndrome is a group of conditions characterized by muscle weakness (myasthenia) that worsens with physical exertion. The muscle weakness typically begins in early childhood but can also appear in adolescence or adulthood. Facial muscles, including muscles that control the eyelids, muscles that move the eyes, and muscles used for chewing and swallowing, are most commonly affected. However, any of the muscles used for movement (skeletal muscles) can be affected in this condition. Due to muscle weakness, affected infants may have feeding difficulties. Development of motor skills such as crawling or walking may be delayed. The severity of the myasthenia varies greatly, with some people experiencing minor weakness and others having such severe weakness that they are unable to walk.
Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).
As far as anyone knows, I have CMS8, which I’m only mentioning because I remember one of my readers being a genetics geek. I have an AGRN mutation.
Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory. Some symptoms of a temporal lobe seizure may be related to these functions, including having odd feelings — such as euphoria, deja vu or fear.
Temporal lobe seizures are sometimes called focal seizures with impaired awareness. Some people remain aware of what’s happening, but during more-intense seizures, you might look awake but be unresponsive. Your lips and hands may make purposeless, repetitive movements.
Temporal lobe seizures may stem from an anatomical defect or scar in your temporal lobe, but the cause is often unknown. Temporal lobe seizures are treated with medication. For some people who don’t respond to medication, surgery may be an option.
An unusual sensation (aura) may precede a temporal lobe seizure, acting as a warning. Not everyone who has temporal lobe seizures has auras, and not everyone who has auras remembers them.
The aura is actually the first part of a focal seizure before consciousness is impaired. Examples of auras include:
- A sudden sense of unprovoked fear or joy
- A deja vu experience — a feeling that what’s happening has happened before
- A sudden or strange odor or taste
- A rising sensation in the abdomen, similar to being on a roller coaster
Sometimes temporal lobe seizures impair your ability to respond to others. This type of temporal lobe seizure usually lasts 30 seconds to two minutes. Characteristic signs and symptoms include:
- Loss of awareness of surroundings
- Lip smacking
- Repeated swallowing or chewing
- Unusual finger movements, such as picking motions
After a temporal lobe seizure, you may have:
- A period of confusion and difficulty speaking
- Inability to recall what occurred during the seizure
- Unawareness of having had a seizure
- Extreme sleepiness
In extreme cases, what starts as a temporal lobe seizure evolves into a generalized tonic-clonic (grand mal) seizure — featuring convulsions and loss of consciousness.
To be even more specific, what starts as a temporal lobe seizure can migrate damn near anywhere it wants to. I’ve never had a tonic-clonic seizure, but I’ve had plenty of absence, atonic, and myoclonic seizures along with the classic complex-partial and simple-partial that most of my seizures consist of. You can read more about generalized seizures here at Johns Hopkins Medicine. They also happen to have a good page on focal epilepsy (of which my seizures are merely one type) and a decent one at their children’s hospital on temporal lobe epilepsy.
I need a couple of feeding tubes, and sometimes a chest port, to stay alive. One of the feeding tubes drains fluid out of my partially paralyzed stomach so it doesn’t overflow into my lungs. The other feeding tube goes straight into my small intestine, and you put all the food, water, and medication in there. That bypasses my stomach, which doesn’t empty properly so most things just sit there or backflow into my lungs instead of being used. People can need feeding tubes for lots of reasons, but in my case it’s to get around the fact that my stomach resembles a dead-end street. Luckily you don’t really need your stomach for digestion. Small intestines do it just fine.
There’s a lot of things people don’t understand about feeding tubes, but one of the objections I hear most often is that living with a feeding tube is ‘unnatural’. It’s modern medicine run amok, going too far, keeping people alive who’d be better off dead, and lots of other cheery bullshit. And the very idea creeps people out because it’s supposedly artificial, unnatural, and disturbing to even think about. It’s hard to know where to begin with that kind of thing, but I have a lot of objections to the idea it’s unnatural.
First off, human beings using technology to keep each other alive is the most natural thing we could possibly do. We are built to have compassion for each other, to take care of each other. We are built to solve problems, both alone and as groups. We pass on our knowledge and build on it from generation to generation. We are skilled at making and improving on technology. These are our natural skills, our natural instincts, and there is little more natural for a human being than using them.
Feeding tubes also aren’t that recent an invention. They date back at least to ancient Egypt, where they were tubes stuck up people’s butts to try to get food into them that way. Butt feeding tubes were the norm until people started figuring out how to use a tube down the throat to bypass the windpipe on the way to the stomach. They used those for everything from torturing and force-feeding prisoners to making picky children eat food they didn’t want. Butt tubes were still around though. When President Garfield was shot, they were able to keep him alive for awhile using a butt-based feeding tube.
It wasn’t until anesthesia made surgery possible and antibiotics reduced the infection risk, though, that people really made headway with the kind of feeding tubes I have. These are implanted through a hole (stoma) directly into the stomach or intestine. When done properly, these days, this is reasonably low-risk and reversible. The hole heals if you take the tube out. Even while the tube is in, it’s perfectly possible to eat by mouth if you’re capable of it. Nothing about the tube itself will prevent you from doing that, only whatever condition is making feeding difficult in the first place. So if you have the feeding tube and don’t need it anymore, you can get used to eating again before having it removed.
It may be obvious that I have a problem with the way people divide things into artificial and natural. Lots of animals use tools and technology. Lots of animals do things to solve problems. We’re not different there. The things we make are just as natural as the things beavers make. Whether we, or beavers, cause problems with the things we make, is a completely different question. But just the act of making things isn’t defying nature. It can’t be. That’s not possible. And it’s perfectly in line with every natural human instinct out there.
But for people who find what human beings do hopelessly unnatural… here’s this other thing that happens:
In case you don’t know what you’re looking at, that’s a couple of Douglas fir trees. One of them is a regular tree, the other is a stump. The stump is alive. Even though it has no leaves to make food out of, the stump is still completely alive.
How is this possible? The roots of the two trees are connected. The tree sends nutrients to the stump, so that it doesn’t have to make its own food. This can keep the stump alive indefinitely. This happens all the time. It’s tube feeding for trees.
Douglas firs, like the redwoods depicted in the wall hanging in my first photo, are a social species of tree. Many social species of tree connect at the roots, either directly root to root, or through a network of roots and fungus. They can send signals, nutrients, and other chemicals through the roots. They even show preference for family and for trees that — however trees decide this — are friends. Just because they’re a social species of plant and work very differently from us, doesn’t mean they don’t share with humans the desire to help each other survive.
I mean, I’m talking in terms that sound very human, but there’s no real words out there for saying what trees want and how. All life wants to be alive, though. For social species, that often involves helping each other out. That goes no matter what kind of life form you are and how different you are.
I’ve never met even the most ridiculous nature purist who’d claim trees are unnatural. And if it’s not unnatural for trees to use their time and resources to feed each other when they can’t make their own food, it’s not unnatural for humans to find ways to do the same. Including feeding tubes.
So don’t call my feeding tube unnatural. It’s as natural as the redwood forest in the crocheted wall hanging next to me in the first picture. And using technology to help each other survive is one of the most natural things human beings can possibly do. All these tubes and machines don’t have to horrify you. I’m a living stump, not the living dead.
You can read all about the history of tubefeeding and more in Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhar O’Gorman. I’d recommend the first half of the book much more than the second half, however.
The first half is well-researched information on tubefeeding in general. The second half reads like a cross between a sales pitch for blenderized diets and regurgitated Michael Pollan stuff. I use Osmolite for my main nutrition and supplement it with blenderized vegetables to get things you won’t find in elemental formulas. But when you’re reading along and the book starts referring to food the author thinks is bad for you as “edible food-like substances” and all the recipes specify the vegetables need to be organic, seriously? I don’t want orthorexia when I already can’t eat, thanks. It does tell you how to properly blenderize food for a feeding tube, though. It focuses on G-tube feeding and doesn’t mention the steps you have to do (like using a chinois) to make sure blenderized food can’t clog a longer and narrower J-tube, though.
If you’re interested in the social lives of trees, the following TED talk may be of interest:
Here is a link to a page with a transcript: How Trees Talk To Each Other.
Books regarding plant communication, cooperation, and senses:
The Hidden Life of Trees: What They Feel, How They Communicate – Discoveries From A Secret World by Peter Wohlleben. This is a combination of personal observations from decades in a German woodland, and scientific discoveries backing up those observations. Living stumps are described in detail.
What A Plant Knows: A Field Guide to the Senses by Daniel Chamovitz. This one describes the sensory experiences of plants in a way that is pretty easy for a layperson to understand and dispels many popular myths about plant senses. The things described are in line with the scientific knowledge at the time the book was written in 2012, most of which is likely to surprise people. There is a lot of bullshit out there about plant senses, this is the real thing as far as we know right now.
Do not confuse these books with The Secret Life of Plants, which is largely garbage. Be careful of information that comes from that particular book, it’s made its way into popular understanding but most of it is nonsense or misleading at best.