Posted in Uncategorized

This is generally a bad sign.

Mel with head flopped onto hir chest.

If I start looking like this. And I either can’t hold my head up or can only do so with difficulty. Or if I do hold my head up but by the moment I get it up, it’s practically already on its way to flopping its way down. Some of which is subjective, some of which is really frigging obvious…

Those are all bad signs.

Because it seems to go in sequence with me. The myasthenia-related weakness.

Eyeballs and related facial muscles are the first thing to have trouble. They contribute to my blindness, in fact, by pointing in different directions. But they point different directions different times of day, so there is no foolproof way to correct it at the eyeball level whether through surgery or prisms.

Neck usually comes next, if not first itself. Holding my head up is hard at the best of times, impossible at others. This has gotten blamed on poor posture most of my life. It’s not poor posture. Myasthenia is not poor posture. It sometimes causes poor posture, but not the kind you can correct for on purpose. It’s like when people congratulate me on my weight loss (I weigh less than I have since I was maybe 20 for the first time in my life since then) knowing I have gastroparesis, which is a disease very few people want.

Then come elbows and knees. I say elbows and knees because they either hit at the same time usually, or one right after the other. I’ve had other weird neuropathy-like stuff that went for my elbows and knees at the same time like that. I don’t know a whole lot about the neurology of this but I barely understand certain aspects of CMS (Congenital Myasthenic Syndrome) myself.

Sort of on equal footing with elbow and knees is some of the muscles involved in breathing. Sometimes it goes straight to breathing, sometimes it takes a detour through my elbows and knees along the way.

And obviously if it messes with my breathing muscles, I’m headed up Shit Creek without a paddle. My best bet at that point is my bipap. I normally use it as the usual nighttime vent for sleep apnea. But since I have both central and obstructive sleep apnea, there is a feature called AutoSV — Automatic Servo-Ventilation. It detects how much you are breathing and shoves air into your lungs to try to jumpstart your brain again. Which makes it so perfect as a noninvasive daytime vent that I have actually had ER breathing teams, ICU teams, and regular parts of the hospital teams, all would rather get someone to bring my bipap from home already set up, then set up a new one.

But that is not a place I want to be.

Because my mom was begging for a bipap just before she coded during a myasthenia crisis in a hospital with no pulmonologists on staff. They only bothered with the bipap after they had decided she needed chest compressions.

But at any rate my pulmonologists have always approved of this use of a bipap.

But I don’t want to get there. And my roomie is sick. And I am exhausted. And I am dealing with longer and longer periods on my own. And this is just how it is. At any rate, I get disoriented same as always, but nothing and nobody around necessarily to orient me. So i just do the only things I know how to do. Which are not always the best or the right things to do. But when your options are limited, you do whatever you can do, because you don’t have other choices.

So that’s what I’m doing.

BTW so-called “head drop” tends to be one of the early signs of agrin-type congenital myasthenic syndrome. One of the most terrifying things I did was find an obscure AGRN-related CMS paper with a picture of a young boy with an all-too-familiar posture. So this is why my neck goes floppy. This is why my eyes point different direction. This is why my eyelids drop asymmetrically a lot, etc.

In a minute I have to stand up and deal with meds. I am dreading standing up. Hell, I am dreading lifting my head up. But you have to do what you have to do.

I am falling or near-falling every day. People from howard still come in periodically. None of them are informed about the falls no matter how often I or they report them (since staff have witnessed some of these). I have to be really careful when i stand up, to use all four limbs, never just try two, or i will fall as often as not.

Posted in Uncategorized

Speech is evil.

Even intermittent emergency speech. Hell, most of the time for me it takes away communication privilege somehow, so I don’t even get that most of the time. I just get this, and even people around me seem to agree::

Speech is evil.

Posted in Uncategorized

I hate waking up like this…

it happens to me all the time, I am used to it, but I hate it.

I wake up into a new world.

Then I have to figure out how to function in that world.

And sometimes that works out.

And sometimes it really doesn’t.

Laura keeps saying she never realized until living with me this long, how much difficulty I have in certain areas.

Mostly eyesight, time, and memory.

It is like things are just blank where they should not be blank. Probably seizures or something related to the epilepsy even if it isn’t directly seizures.

And I get really confused, disoriented, and insecure.

Insecure like a terror that I did something wrong in the blank spot I don’t remember.

And sometimes I have.

Today I need to eat and I can’t remember something about how.

This is normal.

But for now there is nobody to ask because of other things going on in life.

So i am just waiting, and scared, and there’s stuff I don’t understand.

All of this it happens all the time.

I do hide some things about my disabilities sometimes and that includes, well… especially, I hide eyesight issues and certain cognitive issues. So I pass as far more sighted than I actually am. And I do not know how well I pass cognitively but I know that I at least try to hide how disoriented I get and the full extent of my memory and time confusion.

So what I end up doing in these circumstances.

I do what I know how to do and then just wait for things to work, if I can’t find anyone.

This is NOT a request for help or attempts at help, those things make it worse and make me not ever want to write about this. And today I just can’t deal with explaining.

Anyway this is just to talk about the fact that this goes on. So people know what it is like, and that it happens, and things like that.

So like today, I will do any of a number of things. Like I did some washing up around the house earlier and some crochet, and am about to do meds. I just can’t at the moment figure out a few things that are crucial to eating. And I can’t ask for help. So I just have to wait until all the time and abilities and people come together — and they will — and eventually I will eat. This is not ideal. It is what happens though, when there just is not the resources to do things right. It used to be I really did get help in areas I didn’t have the skills for, by people trained and paid to do it. Right now it is all falling on two shoulders, mine and someone with an autoimmune disease, and that just is not how it should be working.

But the waking up disoriented and missing huge amounts of information about the world is almost a daily occurrence, sometimes even more than daily.

Posted in family, friends

What family means to me.

Family means everything to me that it means to most people, but it also means more things.

“I love you” in American Sign Language with a rainbow hand.

Which means when I use terms like birth family I am not using them the way some people use them. I am not using them to either make it more or less family. All of my family is family no matter how they came to be a part of it.

I do not like using the words chosen family. I think that is a wonderful concept for those who experience it that way. It’s not how I experience family at all, no matter who the family are. I have not chosen a single relative, whether biological or not.

I won’t get into what makes someone family if they’re not biologically related. I’d never finish the post.

But love is a lot of it. And being in my life in certain ways is a lot of it. And I’m incredibly grateful to everyone who has become my family in this manner.

But the important part.

The really important part.

Is this.

Having non-birth-related family does not take away from either my relationship with my biological family, or my relationship with my non-biological family.

And I do not, in my head or my heart or anywhere else people use as words for thoughts and feelings, I do not put either biological or non-biological relatives as more or less important, more or less loved, or more or less part of my family.

You’re all family.

And I love y’all. Every single one of you.

And I’m sorry I couldn’t make you the post you deserve.

But I did my best.

And the post got written.

And that’s something.

No, it’s a lot.

But thank you all for being in my life and making it better even though I am terrible at keeping in touch with other people. You all matter to me and having, say, a second mom, doesn’t mean I don’t also have a first mom. and these are all just bad translations of family relationships. But the big thing: More family means more people I love, it doesn’t mean dividing people into greater and lesser parts of my family. And yeah I don’t get along with everyone, but that’s true of every kind of family I’ve ever heard of.

Thank you for being out there.

Thank you for being my family.

Sorry, again, that I haven’t been able to make you the post that you deserve. But I love you, both people I know and people I don’t. people I’m related to by “blood” and otherwise. And again the reason I don’t use the term chosen family is because I didn’t pick anyone out any more than my biological family picked me out. My non-biological family are no more chosen than my biological family, and chosen doesn’t make anyone better or worse than anyone else, or more or less close to me, or more or less loved.

Also I have both immediate and distant relatives, and living relatives and ancestors, within my non-biological family. Just as there are in my biological family.

So. All of you: Thank you. I love you.

Posted in Being human, family, friends, Monday / lundi / lunes / måndag / Monntag

I’ll never write this one if I try to explain it all either.

Understand guys — I wanted to make y’all a post. I know exactly how I want it organized. I know what I want to put in it. And the whole point is showing you I love you. But for whatever reason, I can’t write it as intended. It’s like walking through sludge until I’m surrounded by bramble and can’t find my way out in any direction. Then my head gets tangled up in everything else and I run off and don’t write.

The reason it was going to be so complicated was because I wanted to really pay tribute to each of the individual people in my life who currently count to me as family. This is difficult for many reasons. One reason is juggling privacy concerns — who to use names, who to use initials, what details to leave in, what details to leave out, what details to change. I’m not talking about legal limits on privacy, I’m talking about my attempts at common decency. Which are sometimes stricter.

So there’s a post I want to make, and I’m trying to make it. And I think I’m gonna succeed at making it, at this point. But this is the lead-in to it — that again, I’m having issues with trying to get everything said. So I’m trying again for allowing myself to write without writing as perfectly as I want to.

Because if I had my way?

I’d have a drawing for each and every one of you, or a photograph. And a little bit of commentary. And it’d all be done so that only some people were identifiable, and only in some ways, and so forth. And that’s just not how it’s gonna happen.

The most likely outcome is I’m gonna write a summary about my relationship to y’all and what it means to me, but without as much personalized touches as I would like. And then maybe the personal touches will trickle through to the light of day in the end when I’m done writing all this other stuff.

But for now? This is all I can promise. This post here. Because I already wrote it. But I am pretty sure I will be able to at least write a couple short posts. Where “short” doesn’t necessarily mean the post is short, it just means… something in my brain leading up to the post is shorter than it would’ve been otherwise.

This gets a little bit carried off into corners of my brain it’d never come back from — if I were to explain to you the communication and cognitive issues that I am having here? If I took more than just these couple sentences in this short paragraph, to describe it? I would never get the post written. So this paragraph has to be all, for now. Suffice to say temporal lobe epilepsy does not make for being an efficient writer.

Anyway I’m gonna go and try to write the best post I actually can write, as opposed to what I want to write, and that’s gonna have to be good enough.

Posted in Uncategorized

Short Posts

I have been finding sometimes only short things are what I can write.

Otherwise I start getting obsessive about accuracy. I want to give the meaning of every word that could possibly be misunderstood, beforehand. And then I want to give details about everything that could be misunderstood in the middle. And so on and so forth.

So don’t press me for further information.

And please don’t do the thing where you decide that if I don’t cover every topic at once then what I have to say is not listening to. It’s ableist, among other things. Don’t do it.

Anyway, I am hoping the short posts will add up to bigger posts.

But if I want to post anything, I have to post however I can post. And I’m not going to wait until it meets someone else’s standards or I will never get anything posted. And I am working hard at Ruti Regan’s idea of posting what isn’t perfect already. So if you want to help me in that regard, don’t give me crap for not being thorough. (Normally I’m too thorough.)

Posted in Uncategorized

Wishlists and stuff

Okay my roommate says she will handle whether or not her wishlist is on or off and what to do with it. So if you can’t find it, that’s deliberate on her part. If you can, also deliberate. This is probably the last I’ll say of it, given that I never understood exactly what was happening to begin with. Please don’t send me advice or questions about it because I have no more answers than anyone else does. Other than the problems having existed. Please don’t ask me about mine, either. It’s not that I don’t want to explain things, but I am exhausted and I don’t need extra pressure to perform in ways I can’t. And this is the perfect way to do that.

Posted in family, Sunday - dimanche - domingo - söndag - Sonntag

Short Sunday: Things I Learned from Anna

Memory aids can take the form of jewelry.

My mom, Anna, was part of a writing contest at community college. Same district my best friend and I eventually attended. Her writing teacher had encouraged her to enter the contest. My father, Ron, discouraged her at first, said he was afraid she would fail and be disappointed.

Anna got mad and told him that she let him risk his life going to the mountains because it was important to him, so he had better support her in her desire to take part in this writing contest. And that she was a big girl and could handle losing.

Ron became her biggest supporter as a writer, as well as a trusted proofreader. They worked on her entry, a short story, together. Ron did most of the test-reading and provided valuable feedback. My mother entered and won the contest. The money was just enough to buy a nice locally handmade turquoise ring. She wore it to remember the contest, to remember she was a published writer now, to remember what the whole experience meant to her.

When I was a child, I lost another handmade ring from the same store. I looked everywhere and never found it. As an adult, I found it online through a pawn shop on eBay. I wore that ring to remind me of my mother since I am bad at staying in contact with everyone, including close friends and family. I did not tell my mother about the ring, but that same week she sent me her turquoise ring and told me the story behind it.

It turned out she wanted me to have it because she saw my name everywhere now and wanted to remind me that we are both published writers and have that in common. And she wanted to remind me of what it took for her to get there, I think.

So jewelry can mean a lot of things. And reminding me of people and ideas that matter to me is one of them. I wear this ring to honor and remember my connection to my birth-mother Anna at all times. And the fact that we are both writers, that’s part of the connection.