Posted in Uncategorized

My and my roommate’s wishlists both now

We tried to include variety both in level of necessity and level of expense. Also this only applies to my list (my second mom’s lists all go to the right address for her, mine do not necessarily go to my current address) be careful of using wishlists other than my main one linked above, because they are not all set to ship to the right address and I’ve lost even some of my own packages that way ordering wrong. The wishlist linked here has the right address for now.

Further explanations, including why the wishlists, are in my other post on the subject. Thank you everyone who has helped so far, and thank you everyone who wants to help and can’t, and everything in between. We appreciate everything and just have been too swamped to do everything to respond to people, in the midst of the chaos we are trying to keep our head above water during.

Posted in Uncategorized

We’re broke.

I might explain later, but I just have to get this posted and out of the way or I’ll get bogged down in explaining and never make the post. Suffice to say my budgeting skills suck and my budgeting assistance vanished a long time ago, as did my assistance with the physical actions involved in paying bills, rent, etc. So I’ve been in the hole a lot more than I ought to be. And that’s besides changes in the economy and the fact we’re poor and can’t work and etc. all adding into it of course.)

I don’t usually announce this kind of thing or ask for help but it’s been a bad year.

Anyway, I’ve started a specific Amazon wishlist that should send to my current mailing address (different from my usual one) that’s specifically for assistive tech, access mods, medical supplies, and other things related to medical and/or disability access.

Right now that includes a lot of blind access stuff and Braille-learning tools, because I’m just discovering all the ways my life can be made better by actually acknowledging I’m low vision and using the huge amount of tools available to make my life run more smoothly in that regard. It’s actually exciting, even just having the cane a few days has opened up huge things for me.

But anyway, so.

Amazon wishlist for Assistive Technology & Disability & Medical Stuff

More things, more useful things, may exist later, but this is itself useful, then it’s good enough for now.

Also please do NOT send more drainage bags — I got a huge shipment and I don’t actually use them much anymore now that I have the GOMCO pump. I am extremely grateful for the ones I got, and may need them again, but right now there’s a zillion of them kicking around pretty much everywhere.

Posted in family, medical

Thank you SO MUCH to my brother and my first mother. (Medical Monday)

For my birthday last August, I got one of these:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A blue GOMCO suction pump. There’s a lighted switch on the front, and also a separate light. the switch has three settings: Off, 90 mm Hg suction, and 120 mm Hg suction.

This is a GOMCO suction machine, designed for suctioning things out of your stomach. It has three settings, one off and two on. The two separate on settings are for two different levels of suction: 90 mm Hg and 120 mm Hg.

From that box where the pump lives and the on/off switch lives, a tube goes to a jar. The jar is glass and can be cleaned and sterilized easily. This is the jar:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A glass jar that says “Allied Healthcare Products, Inc.” sitting in a metal holder to stabilize it so it doesn’t fall over.

There’s another tube coming off of the jar. That tube connects to my G-tube.

What does all that mean?

Since my stomach is partially paralyzed, it doesn’t drain into my intestines properly. Some days it drains too slowly. Some days it doesn’t drain at all. All days this means that fluid builds up in my stomach and tries to travel up my esophagus. Then I am likely to aspirate that fluid. I don’t mean a little silent aspiration, although I get that too. I mean I wake up choking on bile, spend hours coughing it out, and end up with either aspiration pneumonia or aspiration pneumonitis as a result. My life was in danger and I got my feeding tubes partially to address this problem.

Unfortunately, while the feeding tubes helped the aspiration a lot1, the bipap made the aspiration worse. Anything that came up into my esophagus far enough, the bipap would blow straight down into my lungs. This is dangerous and has to be avoided at all costs. At one point they were even talking to me about a trach2. This happened every night that I used the bipap. Back to that later, it becomes important.

So the way the drainage system works, is I have a G-tube, a tube that goes into my stomach. It attaches to something with suction. The suction pulls the fluid out of my stomach, into some kind of storage device.

Until now, I was using one of two things that amounted to the same thing: A suction drainage bag, or a Jackson-Pratt drain. They’re both things that you squeeze. And then they slowly expand. And that produces suction. Which drains all the fluid out of my stomach. They’re built differently (one is an accordion attached to a bag and some tubing, the other is a bulb attached to some tubing) but they do roughly the same thing.

But the problem with both of those is you have to be awake to squeeze them.

So the moment they filled up, I’d aspirate, and all the stomach fluids would overflow out of the drainage system and all over me or my belongings. I put up with this, but I didn’t enjoy it, and I couldn’t use my bipap.

This GOMCO pump is amazing because.

It produces suction electronically. Constantly. You don’t have to keep hitting buttons or squeezing bulbs or accordions.

And it dumps into a giant container, compared to what i was draining into before.

So as long as the tubes stay connected there’s much less leakage.

And.

And.

And.

And.

And.

I’ve worn my bipap for 3 nights now, as well as part of the daytime (I have a very irregular sleep schedule without medication).

I have not aspirated once.

Not once.

This is me tonight:

Mel wearing a bipap with full face mask

You have no idea how grateful I am that this is even possible.

Thank you to everyone in my family who helped me get this vital medical equipment.

Being able to wear a bipap has saved my life more than once. The three most memorable times:

  • When I stopped breathing and landed in the ICU, they found other ways to keep me breathing and had my caregivers grab my bipap from home to use as a vent. They knew that its central apnea settings would make it detect absent or shallow breathing and provide the breaths for me, so they let it do that.
  • One time I went to an art gallery opening because I was one of the artists. Being around crowds of drunk people is stressful to me. They were all poking and touching me. Then when I got home, I got involved with a developmental disability self-advocacy event where we were put by the moderators into the position of having to justify our own existence. It was a debate where the other side literally wanted to make it legal for parents to kill children with developmental disabilities. Adults with developmental disabilities were pissed off about this and said so. It got heated, I was already stressed, and the effect on my adrenal insufficiency and myasthenia was muscle weakness (both conditions are made worse by severe stress) including some of the muscles involved in breathing. i had to wear the bipap to breathe deeply enough, for about a week. My pulmonologist said I did the right thing.
  • Just before I was diagnosed with adrenal insufficiency, it got severe enough that I stopped breathing entirely every night, for hours. This was due to severe weakness at the same time of day that you have the least cortisol in your body — around three to six in the morning. It wasn’t just my lungs, I couldn’t move any of my body. I’d wake up with my head flopped onto my chest and horrible pain shooting down my neck because I couldn’t lift my head and the muscles weren’t holding it up. Without the central apnea settings on the bipap I flat-out wouldn’t be here. There was nothing else that could’ve saved my life, because as hard as I tried, I couldn’t even push the wrist button I had to call for help.

Most people hate their bipaps. I love mine.

I love my bipap because it keeps me alive.

I think I am going to come to love my GOMCO drainage pump in the same way. It lets me use my bipap, which also keeps me alive. And the effects of untreated sleep apnea are so wide-ranging and severe I can’t even begin to cover them. I would take some aspiration risk over the risks of untreated sleep apnea. It was just that every night was too much risk.

But the untreated sleep apnea has been our biggest medical problem to solve, and if this keeps up the way it’s going, my doctor is going to be as thrilled as I am. It’s nice to have good medical news for a change. It’s too bad I had to do all the research and my family had to pay out of pocket for this, though.

And that’s a part of disability-related injustice I should talk about here:

We are not offered what we need.

I needed something like this years ago. Not only did nobody offer it, nobody even mentioned it existed. It was taken for granted that I just couldn’t wear my bipap anymore. My doctors didn’t have enough knowledge themselves to offer me the stomach drainage pump. This simply wasn’t offered even though it might save my life and I could’ve died in the meantime from aspiration or complications of untreated sleep apnea.

There’s something wrong with a medical system where this can happen. And does happen. All the time. Especially to disabled people.

Before this, I was literally thinking I’d need someone to sleep nearby me in order to squeeze any of the drainage devices I used up till now. Now I can just turn this thing on and as long as someone helps me dump it out and clean it (easier and safer than the drain bags and drain bulbs I used to use) I can do this.

I’ll still need the other drainage system for more portable purposes. Like I’ll still need drain bulbs when I go out of the house. (Or I can drain manually, but that carries its own risks.) But when i’m in one place, sitting there a long time, like when I sleep or an in bed for other reasons, then this drain machine is perfect.

Here’s a webpage that has the pump on it.

Official picture of the GOMCO suction stomach drainage pump with Allied Healthcare storage jar for fluids.

Also, this should tell you something: I got this in August and was only recently able to set it up and use it. We have been fielding so many minor and major crises medically, that we’ve had very little time and energy to spare. Not even on answering emails. I’m very sorry about this but right now we’re operating so close to capacity that it’s either hard or impossible for us to take on more a lot of the time.

But I’m really, massively excited about the combination of the pump and the bipap actually working. Most people hate their bipaps but I love mine and have been utterly frustrated by being unable to treat one of the most treatable conditions (sleep apnea) out there. I was starting to have all kinds of extra sleep problems including parasomnias, including confusional arousals3 that were terrifying both to experience and to witness.

But basically, if it took me this long to put together something this important to me, understand that my inability to get back to people isn’t because it’s not important to me. This is literally as important as breathing and I couldn’t get to it for months.


1 Yes, feeding tubes overall make aspiration worse. Please don’t “inform” me of this, it doesn’t apply to me. I’ll explain.

Aspiration is any time that you get things in your lungs that you shouldn’t, like food, water, fluid, etc. When you “swallow wrong” and choke food down the wrong hole, that’s a mild aspiration.

But aspiration comes in many kinds and severities. Most people are familiar with aspiration associated with difficulty swallowing (called dysphagia). Most of the time when people talk about using feeding tubes to avoid aspiration, and how it doesn’t work, they’re taking the overall statistics of everyone using feeding tubes, so most aspiration they talk about is from dysphagia.

I have some dysphagia. But most of my aspiration is from a combination of:

  • Gastroparesis: paralysis of the stomach
  • Gastroesophageal Reflux Disease (GERD): When stomach contents flow backwards into your esophagus.
  • Laryngopharyngeal Reflux: When things flow backwards even further up the esophagus into the throat and windpipe.

Meaning, it’s not coming from difficulty swallowing. it’s coming from fluids that are in my stomach. Some of those fluids are manufactured by my stomach. And then anything i swallow (and I try not to swallow anything other than spit, but sometimes in a moment of weakness I’ll eat or drink something). Anything that makes it to my stomach, just kind of sits there. And after it sits there for awhile, it builds up to a larger amount. And that larger amount is much more likely to travel up to my throat and down into my lungs.

I have mixed central and obstructive sleep apnea. I also have conditions that have required the central apnea settings on my bipap as a noninvasive ventilator. It is vitally important to my health that I wear a bipap. I have not been able to wear a bipap in years. Because as bad as the complications of sleep apnea? They’re nothing like as bad as the complications of a bipap blowing all your refluxed bile and stomach acid into your lungs every single night.

So what my G-tube (the feeding tube that goes to my stomach) does, is drains my stomach at the source. Anything in my stomach then goes into a drainage container of some kind, which must be emptied frequently. It has to be suction drainage, no other kind of drainage has worked for me at all. But it does work.

So my situation is not the situation of someone trying to use, say, a nasogastric tube, to avoid aspiration associated with difficulty swallowing. And our situations should not be considered the same statistically or otherwise. There are many kinds of feeding tube and many kinds of aspiration, and to understand whether a feeding tube will help your aspiration, whoever you are? You have to understand a lot about the reasons for the aspiration, the form the aspiration takes, the kinds of tubes available, and so forth.

A little knowledge is a dangerous thing.

And people who say that all uses of feeding tubes to fix aspiration are wrong, have a little knowledge.

Mind you, I don’t understand every part of this either. I’m not claiming medical expertise i don’t have. But I know enough to know why my aspiration and tube situation is different from using some other kind of tube (or any kind of tube) to treat dysphagia. I don’t know whether there are more effective ways to use feeding tubes against dysphagia and lss effective ways, or whether there’s no way. I just know that two tubes — G-tube to drain the stomach, J-tube to put food water and meds into the intestines — is pretty standard for gastroparesis and can when the conditions are right prevent aspiration. And of course this won’t be reflected in overall statistics on aspiration and feeding tubes, because most people who aspirate and have feeding tubes don’t have gastroparesis.


2 We decided against the trach for many reasons, but there was one big one. Apparently there’s a mechanism in a trach that keeps reflux from getting into your lungs. Apparently the amount of reflux I had meant that it would basically just go right through the mechanism and into my lungs and then I’d be aspirating anyway, plus dealing with all the risks that a trach involved. Even when I need a vent, which I sometimes do (not just for sleep apnea but also for congenital myasthenic syndrome, central apnea while awake, and a few other things including when my adrenal insufficiency makes my muscles weak during cortisol lows), my bipap works better anyway.


3 It’s where you wake up completely disoriented and often, for some reason, angry. I don’t remember what I’m like when this happens, but apparently I’m grouchy and rude most of the time. So I wake up to people who are already mad at me or scared of me and reacting to things I don’t remember doing but that certainly sound unpleasant. Or I wake up in the middle of shouting at someone. Whatever it is, I hope it goes away when the sleep apnea is better treated. It may not be as dangerous as breathing problems, but it’s scary.

Posted in Days of the Week, Sunday - dimanche - domingo - söndag - Sonntag, Topic Themes

My Cane Came Today! (Storytelling Sunday)

Mel holding up a white cane to a mirror and taking a selfie.
Mel taking a selfie holding a cane up to a public bathroom mirror.
Mel’s cane as seen from above hir walker, sliding along the floor.
Mel’s cane as seen from above hir walker, slightly different position, sliding along the floor.
Mel’s cane as seen from above hir walker, slightly different position, feeling along the floor.

Hopefully the captions on those photos will do the trick. This is just some pictures of me with the white cane that came today.

I’m already discovering that it helps me use my vision in ways I couldn’t have imagined: When I’m feeling ahead for obstacles, that means I can look around me. Normally looking around me is a big source of falls. If this continues, this is huge. But I knew it was the right idea… I’m actually probably a little unbearable to people around me with the level of excitement at being able to get around better, now that I’m not scared of this. It feels like one more way of being me again, and not someone everyone else wants to make me into. If this is how I function best, I’m not going to knock it and I’m not going to run from it anymore.

Storyteling Sunday, written on red text, on a striped yellow/green/black/white/cyan background.
Storytelling Sunday.
Posted in disability rights, quotes, Sunday - dimanche - domingo - söndag - Sonntag

The Things I’ve Heard About My Eyes and Brain… (Storytelling Sunday)

Some of the words used in this post are really ugly. That’s because they’re the really ugly words that I heard. I’m not gonna sugarcoat this. But if you can’t deal with reading the r-word in either of its common forms, or hear “psychotic” or “blind” used as insults rather than descriptions, you might want to skip this.

Storyteling Sunday, written on red text, on a striped yellow/green/black/white/cyan background.
Storytelling Sunday.

The story here, the reason it’s on Storytelling Sunday, is because each of these quotes forms one little piece of a long story that’ll be familiar to way too many disabled people. And while I’d like the story to stand on its own, I’d just like to comment that I don’t think lesser of any group targeted by such speech. And I don’t even necessarily think lesser of the people creating this speech — it’s very destructive, but it happened a long time ago to a bunch of people I’m leaving anonymous on purpose because who knows how they’ve changed since then or why each one said what they said.

You look BLIND.

close family members

What, are you a RETARD or something?

other kids

You look PSYCHOTIC.

close family members

You look RETARDED.

close family members

Do you have a HEARING PROBLEM or something?

lots of people

What are you BLIND?

lots of people

People think you’re BLIND.

close family members

People think you’re RETARDED or something.

close family members

People think you’re PSYCHOTIC.

close family members

You TARD.

close family members

You’re HALF A BUBBLE OFF PLUMB.

close family members, therapist

You’re A FEW SANDWICHES SHORT OF A PICNIC.

close family members

You’re a FEW FRIES SHORT OF A HAPPY MEAL.

close family members

You DON’T HAVE ALL YOUR OARS IN THE WATER.

close family members

You’re a little bit TETCHED.

close family members

Oh don’t worry, we’re all a little SLOW in this family!

close family member regarding family reunion

It’s only after living with you for six months that I can see the degree of your VISUAL IMPAIRMENT.

close family member

You look STUCK-ON STUPID.

kid

You sure you’re not BLIND?

practically everyone

You CAN’T SEE can you?

practically everyone

Hey look at that BLIND [guy/lady]!

Lots of strangers

You know ‘gifted’ is just what they tell RETARDS they are so we don’t have to tell them they’re RETARDED…

lots of kids

You just seem like a SPECIAL ED KINDA GAL…

A hairdresser who’d asked whether my school was a ‘special school’ (it was).

These things were said in all manner of tones. Some people seemed to be trying to be affectionate. Others were aiming to insult and harm and bully. Others were just confused or curious. But all of this has an effect on you when you hear it day in, day out, every day, in one form or another. Especially when it’s coming from loved ones and people who are supposed to be loved ones.

I’ve asked about the blind part. Apparently it’s about a bunch of things: I stand too stiffly. I don’t make the normal eye movements and look straight ahead too much. (This is just called “staring” and apparently makes me stand out.) I don’t respond normally to visual information. (I am low-vision, guys…) I wear dark glasses in low light. I don’t always move my head or eyeballs in ways that would indicate noticing things visually. I could go on. Apparently I have many things that make me “look blind”.

But hearing these things so much made me think there was something wrong or shameful about being low-vision.

And, well, as I said, the story told by the above quotes most likely speaks for itself when any disabled person who’s heard similar reads it. I just want to make sure people know, my problem here is not “OMG I’m being compared to people I think are inferior,” it’s “OMG I’m being compared to people the speaker thinks is inferior, and being thought inferior myself, but I wouldn’t be inferior whether or not these things were accurate descriptions.

Right now I’m talking about blindness, but blindness is just one of the things that was repeatedly called to my attention as a sign I was Doing Something Wrong, or rather Being Something Wrong (you know you’re being accused of Being Something Wrong when the local kids use your full name as a cuss word growing up). Which — no — doesn’t make the slightest bit of sense, but ableism rarely does.

But it does get inside of you, telling you these things do make you inferior (whether they exist or not barely matters). And I’ve been ridiculously afraid of being low-vision for way too long. Time to change what’s inside my head, time not to let this crap into my brain anymore. You don’t have to accept every idea handed to you, something that was news to me when I learned it rather late.

Posted in disability rights, fear, Friday / vendredi / viernes / fredag / Frietag, Things I try to hide

Cuz I’m Blind (Viernes de Baja Visión: Low Vision Friday)

Mel's eyeballs pointing different directions due to congenital myasthenic syndrome.
Mel’s eyeballs, already pointing in different directions despite it being fairly early in the day.

My friend told me that facing my fears was gonna be important. I think she was right. Here’s one of them.

Here’s one of my weirder fears: Acknowledging that I have low vision, am partially sighted, partially blind, whatever you want to call it.

Understand…

  • I use a screenreader.
  • I learned emacs so I could use emacspeak to run my old laptop without ever having to see the screen. I would go long periods of doing all of my computer and online work using a full screenreader.
  • More recently, I have had extreme trouble reading anything visually longer than a couple paragraphs. I use a screenreader for that.
  • I can’t see cars even when they’re about to hit me.
  • I have been pulled out of traffic by both friends and strangers.
  • My ex insisted on holding my hand when I crossed the street due to my inability to process the visual information quickly enough to be safe around moving cars. I have a cognitive doppelgänger named Anne, and her significant other refers to parking lots as “Anne death traps” for the same reason. She’s been hit before.
  • When i was growing up, I never fell out of a tree, which I could feel with my whole body. But on flat ground, I often tripped or even fell due in part to being unable to see obstacles or feel my body properly. I did better with walking sticks or similar. (Also true of Anne.)
  • Doctors have checkboxed “low vision” on forms for me before without asking me, just knowing my vision problems.
  • I just can’t see obstacles fast enough to react to them. I walk straight into things even when I do see them, because even when I see them I don’t process visual information fast enough.
  • I can identify objects by touch far better than sight.
  • I can feel my way around much more reliably for understanding and navigating my environment, than I can see my way around. Seeing is like a backup sense at best.
  • I fall less in the dark than I do in the light because visual information is often just a distraction to me.
  • Sometimes I take my glasses off so I can navigate the world better.
  • I used to have an entire system where in new places, I’d grab one end of a scarf or sock and have a friend or caregiver grab the other, and then I wouldn’t bash into things and fall over nearly as much, and could find my way around rapidly.
  • I often stop and feel things with my hands or feet to understand them.
  • I understand things best through the physical movement of my body through space. I loved being able to feel the sidewalk through my power wheelchair even though the visual part of driving it around was grueling (another reason for a cane, whether or not I end up needing the powerchair again, which I suspect I do for longer distances).
  • I’ve been comparing my visual problems to blind people for a really long time.
  • I’ve been trying to convince people that spatial is not visual, because I am so very spatial that I used to have an automatic map of everywhere I’d ever been, yet so very much not a visual thinker and I often used the comparison of “the way blind people do spatial things”.
  • People often assume I’m blind without even asking, just from how I respond to my environment.

“Cuz I’m blind” has become my go-to reply when people ask me why I didn’t see something, which is pretty much always. Except, it’s not a joke, I really do count as low vision. I’ve been afraid to face it and some of its implications, but it’s true. And my second mom has told me that only living with me for six months has taught her exactly how bad my eyesight is.

It’s not conventionally awful, mind you. Without my glasses I can’t see well at all, but my corrected vision is almost normal, or was last time I got checked.

But.

I basically function like I have various forms of visual agnosias. That’s where you might have 20/20 vision (or might not), but you can’t understand what you see, or parts of what you see.

I also have really weird visual effects that I think are from a combination of overload and synesthesia. It makes everything a fragmented distorted mess. In new places, it can be severe enough that I understand nothing of what I see but get horrible motion sickness from all the moving pieces and no visual horizon. At least that’s how it was explained to me by a researcher once. I always had the visual distortions, but only after I became capable of motion sickness in my teens, did I start vomiting uncontrollably after traveling. Before that I could play with my vision almost like a toy and didn’t find the distortions distressing.

I have migraines and temporal lobe epilepsy. Each of those can cause its own temporary visual issues, from visual agnosia to various spots and lines and blobs and blank spots in your vision. One of my neurologists, the migraine specialist, suspects I am in status migraine aura. Status means constant. Migraine means the large set of things that can happen (not even close to just a headache) as a result of migraine headaches, anything from mild visual distortions to things that resemble a stroke if you don’t know what’s going on. Aura is the part of the migraine that isn’t the headache and usually comes before a headache, so includes all the visual distortions that come with migraines.

So — whether he’s right or not about the source of this being a constant migraine aura I don’t know but it sounds plausible — my visual field is filled up with lots of clutter that isn’t part of the real world or distorts the real world. There’s spots. There’s blank spots. There’s little black squares. There’s squiggly pastel-colored lines. There’s stuff that looks like water — both like looking through water up through a swimming pool, and like looking through light sprinkling rain falling diagonally. There’s all kinds of things that get in the way of seeing anything at all. There’s something that looks like rainbow-colored contour maps that can cover my entire visual field, and same with blobs of colored cloud.

Then there’s seizures. When I have them, I can hallucinate just about anything I’ve seen before in the past. Like one time it was the Dark Mark from Harry Potter, another time it was a doll from Japan that belonged to my mother. Both moved in a characteristic way. It’s rare that I have full-on visual hallucinations like that, but they happen during seizures sometimes.

Things can look like they’re moving when they’re not. Things can look like they’re stopped when they’re moving. Things can look like they are stopped in one place, then stopped in a new place, then stopped in a new place. Things can look like they are just pieces like a Cubist painting all pointing different ways. Things can look like all kinds of things. And they look quite interesting a lot of the time, some of this may help me in my art, but they aren’t really good for seeing.

Anyway.

Every time I go out, I risk falling, and cars are a hazard, and yet I have been reluctant to get a white cane.

I’m getting a white cane.

I’ve been afraid of the classic low vision problem of taking out your white cane to signal drivers the need for safety, but then pulling out a book and getting yelled at by people who don’t know that blind and low vision people can sometimes read. (And somehow think it’s their business. Why it’s their business, I don’t know. Even if it were somehow Against The Rules, it’s not like anyone’s getting hurt by the fact that disability isn’t as black and white as people want to make it.)

Understand — this means that ableism has filled my life so much that I was risking my life rather than risk the social embarrassment of getting yelled at by people who don’t understand my vision, don’t need to understand my vision, and shouldn’t get themselves involved.

I’ve heard of people doing the same thing with wheelchairs. I never had a problem with wheelchairs.

But growing up, I was always being told I “looked blind”. I asked, at one point, what people meant. Apparently it’s my posture, the fact I wear tinted glasses inside, the fact that I tend to stare straight ahead and not blink a lot, and the fact that I don’t react quickly to most kinds of visual information. (Small objects moving at a certain speed are a strong suit of mine. So like, if I try to play basketball the ball looks like a bunch of fragmented pieces, but if I play badminton or ping-pong it’s just the right size and speed I can be reasonably good at the sport.)

Anyway.

I’ve realized that every piece of adaptive equipment I already have is necessary, and there are more kinds I need.

If I don’t use my walker indoors, I fall. And yet I forget to use my walker. (Not this week much. Not with my hip possibly fractured. But usually. I’m trying to get better.)

And I forget to use my feeding pump properly.

And a million other things.

So I’m gonna try to learn basic cane travel. And at minimum I’m gonna get a signal cane for crossing the street. I’ve broken bones crossing the street trying to dodge cars I can’t see already. I don’t need to test how often I can survive that.

In addition to the agnosia-like stuff, by the way, myasthenia presents its own visual complications. There’s something called pseudomyopia which means my vision gets randomly and intermittently blurry. Then there’s also the fact that my eye muscles weaken so that my eyes point both out to the sides and one of them points downwards, resulting in double vision at best and terrible depth perception.

I also have the much more standard myopia and astigmatism.

But I need to get used to the idea that I’m low-vision, for real, not just something I say to laugh off the fact that I’m uncomfortable with physically not being able to see obvious things that are right in front of me.

Because I am.

And I need to start adapting to that and stop being scared.

People will think what they want to think no matter what I do. I might as well try and live the life I’m supposed to live, not the life other people want for me. It’s not like not having a cane has worked in terms of not getting treated as if I’m blind.

Cuz I’m blind. Or low vision. Or whatever. And it apparently shows, and always to some extent has.

I just don’t feel like hiding anymore.

Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Monday / lundi / lunes / måndag / Monntag, Saturday / samedi / sábado / lördag / Sonnabend or Samstag, Sunday - dimanche - domingo - söndag - Sonntag, Thursday / jeudi / jueves / torsdag / Donnerstag, Topic Themes, Tuesday / mardi / martes / tisdag / Dienstag, Uncategorized, Wednesday / mercredi / miércoles / onsdag / Mittwoch

Monday’s Child rhymes.

Monday’s child is fair of face.

Tuesday’s child is full of grace.

Wednesday’s child is full of woe.

Thursday’s child has far to go.

Friday’s child is loving and giving.

Saturday’s child works hard for a living.

Sunday's Child

But the child who is born on the Sabbath Day is bonny and blithe and good and gay.

Other variants:

But the child that is born on the Sabbath Day
Is bonny and blithe and good and gay
Monday's child is fair of face
Tuesday's child is full of grace
Wednesday's child is merry and glad
Thursday's child is sour and sad
Friday's child is loving and giving
And Saturday's child must work for its living.
Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is sour and grum,
Thursday's child has welcome home,
Friday's child is free in giving,
Saturday's child works hard for his living.
And the child that is born on Christmas Day
Is great, and good, and fair, and gay
Monday's child is fair of face.
Tuesday's child is full of grace.
Wednesday's child is loving and giving.
Thursday's child works hard for a living.
Friday's child is full of woe.
Saturday's child has far to go.
But the child that is born on the sabbath day
Is brave and bonny, and good and gay.

Monday’s Child:

  • Fair of face
  • red and spotty

Tuesday’s child:

  • full of grace
  • won’t use the potty

Wednesday’s child:

  • full of woe
  • loving and giving
  • sour and grum
  • merry and glad
  • won’t go to bed

Thursday’s child

  • has far to go
  • has welcome home
  • is sour and sad
  • will not be fed

Friday’s child:

  • loving and giving
  • full of woe
  • free in giving
  • breaks all his toys

Saturday’s child:

  • works hard for a living
  • has far to go
  • must work for its living
  • makes an awful noise.
Sunday's Child

Sunday’s Child:

  • bonny and blithe and good and gay
  • blithe and winsome and happy and gay
  • great and good and fair and gay
  • brave and bonny and good and gay
  • is a pain in the neck like the rest, okay?

For my blogging topics, this is the perfect kind of thing. There are many versions of this rhyme, so many possibilities for most of the days. And each topic could be a lot of different things. “Fair of face” could turn into a discussion of beauty, or a discussion of racism and colorism, or a discussion of albinism, or any of a number of other things, depending on what was going on that day. LGBTQ issues could be tied to the word ‘gay’ even though it’s clearly used here to mean ‘happy’. (And Sunday’s Child could be used as a discussion of LGBTQ issues or a discussion of happiness or a lot of other things.)

Anyway, there’s so many versions of this that I’ll probably be adding onto it as I hear more of them. For now, though, these are what I’ve got, and any of them could be a number of different blogging topics.

And I have to say I love that the luckiest kid always gets called ‘gay’. I know that’s not the meaning of gay they were going for, but I love it anyway. And any meaning of any of these words is fair game for my purposes, which are to organize the way I blog for a number of important reasons. I can’t explain them all but I do have reasons.

Posted in Being human, Blogging about blogging, Days of the Week, fear, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Fear for Courage Friday

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.
fear for courage Friday
Fear for Courage Friday

…To these ends, in the practice of my Art, I will put aside fear for courage…

Wizard’s Oath

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.

fear for courage Friday
Fear for Courage Friday

Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Friends and Family Friday

friends and family Friday
friends and family Friday.

Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.

Posted in Days of the Week, Thursday / jeudi / jueves / torsdag / Donnerstag, Topic Themes

Thinky Bits Thursday

Thinky Bits Thursday
Famous “The Thinker” sculpture with a backdrop of neurons, saying “Thinky Bits Thursday” in orange letters.

This is a placeholder post for Thinky Bits Thursday. Explanations will happen — maybe today, maybe tomorrow, maybe never, but probably soon. If I don’t post this, though, I’ll never post it, and then I’ll never remember to use the graphic the way I meant to use it.

Human beings are often overly proud of our thinky bits. Thinky bits being what I call the parts of our thinking that so many of us see as all there is to “us” to begin with. The parts of our brains that do a certain pretty spectacular kind of thinking, then get all impressed with ourselves all the while watching ourselves think.

All of which is great but there’s a lot more to us than our thinky bits. Even our thinky bits aren’t all there is to thinking, or all there is to thinky bits.

Anyway, I still can’t seem to manage a simple bullet-point list of some topics this could be about, so I’m leaving this as a placeholder still. But I’m meaning to say that this can range from any kind of theory or theoretical thinking, to something about how thinking happens, there are a lot of possibilities.

But my thinky bits aren’t working too great at the moment, and that’s part of my problem. (There’s two separate problems, probably more, that this system of post topics for days of the week is supposed to help with. And both the ones I can think of, could easily fall under the category ‘thinky bits’. But so could a lot of other things I can’t seem to write about at the moment.)