Posted in Being human, Developmental disability, Epilepsy, fear, medical, Temporal Lobe Epilepsy

Showing Fear

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.

Selfie while I was writing this. One of those “cat got too close to the camera” selfies. But does look scared. Because I am.

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.

But… yeah.

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.


Footnotes

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.

1 Congenital Myasthenic Syndrome as defined by NIH Genetics Home Reference:

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.

2 Temporal Lobe Epilepsy as described (in terms of most common seizure type) by the Mayo Clinic:

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
  • Staring
  • 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.

Posted in crossroads, death, Developmental disability, disability rights, family, history, Self-advocacy, Temporal Lobe Epilepsy

Crossroads #05 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

Your bone resonance exists unseen
By those who can only
Read the words
On gravestones
Without feeling
The bones underneath

The grave of my dad’s aunt Voicy — he was close to her, she was more like a sister in age (my dad was 1941-2014). May they both rest in peace, and her husband as well. The gravestone is in Rose Bud, White County, Arkansas.
My great-aunt Voicy.
(I think. I’m faceblind and
some memorial websites get her and her
mom confused. I honored both of them
in my name change.)

They would have it
That you were a crip
And only a crip
You almost believed them
And were probably afraid
To say what you may have suspected

But your bones know better
And so do I

Spoken from the bone,
Mel

Posted in crossroads, Developmental disability, disability rights, letters, Self-advocacy

Crossroads #04 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.
Yellow hill with oak trees in Henry Coe State Park.
Image courtesy Wild Recovery.

Dear Cheryl,

I heard you speaking
The language of Ideas
But I felt your bones stirring
In the language of Resonant Bones
You called yourself an ally
But if you speak Resonant Bone
Only an Idea
Could convince you
You’re not one of us
(Because you are)
And that is why
I’ve written you the invitation
And not someone else
I’ll explain more later
I promise

Spoken from the bone,
Mel

Madrone trees near a trail in Henry Coe State Park.
Image courtesy Wild Recovery.

Posted in crossroads, Developmental disability, disability rights, family, from the bone, Okies, Self-advocacy

Crossroads #03 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.
A small area of forest in California's Siskiyou Mountain range near the Oregon border. This being the cemetery where my father was buried according to his wishes -- in just a pine box and shroud with no funeral ceremony.
Small California mountain forest cemetery that contains my father’s bones.

Dear Cheryl,

The bones of my Okie ancestors
Lie in the cemeteries
Of Wasco
Of Shafter
Of many towns
Throughout Tulare and Kern Counties
The rest of the San Joaquin Valley
Stretching back
To Oklahoma and Arkansas

A collection of Baggs gravestones from mostly San Joaquin Valley, California cemeteries.
A collection of Baggs gravestones from mostly San Joaquin Valley, California cemeteries. One (upper right) is my dad’s in the Siskiyous.

The bones of my Okie ancestors
Dance to a country beat
And my living bones
Dance in resonance
Without trying

Most people understand this
At least in part
Most people
Most people understand
The ties of blood
This kind of ancestry

Dry grass hills and trees outside Bakersfield, California. I feel these hills in my bones and there are bones in hills like these.

Even if they can’t feel their bones
Shaking the yellow-grass California hills
Bothering the roots of the lone oak trees
Living endlessly forgotten
Under converted deserts
And redwood forests
Manzanita and madrone
Mudslide and earthquake and fire

These are the bones in my life
You are most likely to understand
So they are the first I will hand you
Please think hard about them
But don’t forget
To listen in your own bones
For the song

The other song.

Spoken from the bone,
Mel

Posted in Developmental disability

Crossroads #02 (Self-Advocacy Sunday)

desert scene in pink at twilight with crossroad  road sign and a title that reads "Crossroads" in the same pink as the sand
Crossroads in the California desert.

Dear Cheryl,

We’ve never met
(We almost crossed paths in Oakland
But it doesn’t count)
And conventional wisdom
Would have it
That we could never meet

Conventional wisdom
Is why we must meet
Hence my invitation
To the crossroads
Of the borderlands
Of our native realms

I have things to tell you
That can only be told in translation
And things to hear from you
That can only be heard
At the crossing of the bones

And your death
Did kind of put an end
To any hope
Of reaching you — say —
On the phone

Spoken from the bone,
Mel

Posted in crossroads, Developmental disability, Developmental disability service system, disability rights, from the bone, Self-advocacy

Crossroads #01 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

There is a lonely crossroad
Somewhere between here and nowhere

Where the crows wheel in circles
And call to each other
In their hidden language
But never talk to us
And never land

Where the light is always twilight
Though it range from purple to blue
And sometimes a murky greyish tan

Where a paved road with wheelchair access
Meets a dirt footpath without
Where the Country of Ideas
Borders the Country of Resonant Bones

And it is that borderland
And that crossroads
Where we must meet
We must both translate
We must both learn to listen in a foreign tongue

And as speaking to the dead
Is no problem
In this land outside of time
I have no fear
That you will stand me up
For this strange date

You’ll be too curious
You’ll begin to feel
A strange resonant song
In that part of your bones
Where your body anchors your soul
And you won’t be able to help dancing
To the tune
That already haunts your twilight dreams

So come to the crossroads of Bones and Ideas
You’ll find me there
Awaiting you
As long as it takes

Spoken from the bone,
Mel

Posted in Uncategorized

Emergency speech is dangerous.

I’ve mentioned that I’ve had some recent apparent improvements in my speech, including what I’ve termed emergency speech. I’ve described that before, I don’t have the brain energy to put into words what emergency speech is, while also making this post as well.

Emergency speech is dangerous to me.

It may not even be worth the times it has allowed me to speak during medical crises.

I’ve had intermittent speech for a little while now.

And I thought it was okay. I was wrong.

I was so very, very wrong.

Here is what other people have said, people who don’t even know each other, people who don’t understand my neurology in particular, people who have no reason to all be saying the same damn thing.

Which is.

When I speak it’s as if I’m an entirely different person. That person is not a very likable person in comparison to how I normally am. That person bears no resemblance to the person I normally am. Sometimes, people think it’s who I am. Then they see me on a day when I’m typing, and it’s like they’re getting to know me for the first time. And when they see a day when I’m typing, they get it, immediately, that speech affects every single other ability I have. It mangles them. It cannibalizes the rest of my brain to allow itself to exist.

And it doesn’t just do this while the speech is possible.

If speech is impossible, this weird language program stays on.

The entire process — both when speech exists and when it doesn’t — the best analogy I can come up with is that it’s like that one browser window. Where this one window is slowing down your entire computer to a halt. It may have already crashed and rebooted your computer several times. And yet you need this webpage for something — maybe online banking — that you can’t do any other way. But no matter how much you need it, eventually it becomes so destructive that the whole thing falls apart, and takes down a lot of other crap with it.

And just like in the world of people, this computer analogy also includes the fact that the computer crashing and slowing down affects everyone who needs the computer to be working. It does not only affect the person using the computer themselves.

And as far as my experiences of speech and privilege go, it does gain me some kinds of privilege, but it’s not simple. It’s not like you have ‘speech privilege’ that’s a thing that either exists or doesn’t. (I don’t even think that way anyway, but lots of people do.) It’s way more complicated than that. And there are many times I’ve found that I’m actually treated better — sometimes when it’s a life and death thing — when I can’t talk, than when I can. There’s something about the way speech manifests for me that quite often results in treatment that is worse than I’d get treated if I couldn’t speak.

And I’m saying this as someone who’s had it declared in front of me that I have the “cognitive functioning of an infant” because I couldn’t speak. (Emergency speech, when it happens, is not voluntary, and neither is my loss of speech.) That’s one incident I’m recalling, but it’s happened to me countless times.

I knew something was wrong when my roommate called my best friend to get me to stop talking, and then my best friend told me she couldn’t talk to me unless I typed to communicate, and that our connection to each other was totally mangled by the presence of speech.

It worked.

My life is getting a lot better.

I can understand the world again more than I could before.

Things make more sense.

I can do more.

I feel like I’ve been shoved behind a wall and only now can come out.

And I feel stupid for having not noticed this was going to happen, even though it has always happened with speech for me, my whole life, even at my best speech, it has always torn through my life like someone put a tornado in my brain.

And it doesn’t just tear through my life, it tears through the lives of everyone who cares about me.

It makes me live as someone I’m not.

It makes me repeat words that have nothing to do with my thoughts.

Imagine that every time you go to say something, you say the opposite of what you intend to say, and that gives you just the tiniest idea of what speech is like for me.

I’m not talking about things that are harmless or just about feelings.

I’m talking about my entire life here.

Everything I communicate.

SPEECH IS A HINDRANCE TO THIS.

I’ve always had spotty, intermittent, weird, crappy speech even at its most fluent. Fluency is not the same thing as communication. You can be completely fluent, you can even sound as if what you have to say is a plausible response to a situation, and you can be saying nothing of what you intend to say.

How is that dangerous?

Say you’re in the emergency room with something serious and that is when speech pops in (which it usually is something like that for me, that starts it off) and only portions of what you say bear any resemblance to what you’re thinking, and you can’t switch it off or change it or make it better.

Say you have a broken bone and you know it and you can’t say it.

That’s my entire life.

Words aren’t liberation for me. They’re a trap. And by a trap, I mean like the kind with spikes that clamp around your leg and make you unable to move until someone comes along to kill you. I have no words strong enough for my revulsion to speech.

Because I’ve had ALL of the following in my lifetime:

  • Fluent-sounding speech that was communicative
  • Fluent-sounding speech t hat was not communicative
  • Non-fluent speech that was communicative
  • Non-fluent speech that was not communicative
  • Total lack of speech
  • Only echolalia (whether communicative or otherwise)
  • Carefully recombined echolalia (can resemble fluent speech if done skillfully enough)
  • Intermittent speech
  • Frequent speech
  • Never-speech
  • Emergency speech
  • Random speech

And that’s just a short list of the basics. And I’ve had all of these situations for years at a time, many of them combined or mixing or intermittent with each other.

Speech is not my friend.

Speech is my enemy.

Speech could actually destroy me and that’s not hyperbole. I can think of many scenarios. Many of which have almost happened.

This is why I find the encouragement of speech in people with speech impairments so frigging toxic.

What we need is communication. For some people, that’s gonna involve speech at least some of the time. For some people, it will never involve speech and should never involve speech. Some people will want to make a really good try at speech even if they know they’ll never be fluent, because it matters a lot to them, and that’s a personal choice. But it is not wrong to dislike, distrust, and disavow something that is so completely and universally destructive a force in your life as speech is in mine.

And no, I can’t snap my fingers and be able to speak fluently, it has never worked like that even at my best. The ability is either there or not and I have no choice in that. I have some choices in how it’s applied, but the basic ability comes and goes as it pleases.

And I don’t think I learned speech right to begin with, and recent experiences have convinced me that barring one of those weird moments (and I thought I’d had one here — but I didn’t, I really, really didn’t, in a huge way, I didn’t) I will never learn it right. If 15 years of virtually no speech (well, basically no speech at all aside from a few emergency speech things towards the end) didn’t give my brain the chance to reset itself and learn speech the right way, I’m not sure anything will.

And I wanted to warn other people.

Other people with the same kind of speech problems.

Do what you need to do, and what you want to do, but please keep in mind.

You may not be aware how destructive it is. The speech itself can get in your way of that awareness. It might be hurting you. It might even be hurting those around you. Emergency speech is dangerous and needs to be treated, at best, as a dangerous tool, but a tool like a power tool, one that can slice your leg off if you’re not careful, one that some people would choose to use and some people should never touch because they just can’t safely.

I can’t safely touch speech.

I can’t.

It’s not a choice.

I may be able to make choices based on the fact that I can’t safely touch speech.

But there is nothing I can do to make speech safe.

Language is already enough of a compromise, enough of a hurdle, enough of a difficulty. Even, again, at my best. And the problems I have with speech still exist in typing, they’re just much less severe and much more easy to deal with. And the person you get when I’m typing is much closer to the person I am.

My speech is just recombined echo. Much of it learned in an involuntary situation where I didn’t understand language yet and I didn’t understand the point of the speech that I was learning, such that by the time I did know the point, I’d already learned a lot of things wrong. In ways that you can’t unlearn. Things that probably laid down pathways in my brain long ago to make this either impossible or so hard it’s not worth it.

Because I have priorities, too.

I have things I want to do with communication.

And if I want to communicate, I have so many better tools than speech.

Even if I want to use language. Even though I hate language. Typed language is still better than speech.

You don’t have to understand. And I refuse to argue with anyone about this. This just is how I work and you can take it or leave it but I’m not gonna justify it or argue with people about it. You don’t know what goes on inside my brain. I do. Therefore, I get to be the one who makes these decisions, and you get to butt out if you don’t like it.

Hate to put it that way but seriously, if you knew the sheer level of havoc that speech has wreaked in its attempt at a comeback, you’d know how out of control and toxic things got before my friends intervened.

I am so happy I have friends who both care about me and understand this situation. The best friend who helped me to type again has the same sort of speech issues I do, so she knows intimately how bad it is. She said she sometimes yells nonsensical random shit at people she cares about because speech just does that to her. I’d just been doing that to someone I had no reason to do that for at all, other than, well, the presence of speech.

I understand what speech can mean to people. But to me it’s like swallowing poison. And I’m not gonna swallow anymore.

Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

Birthday card from another universe.

Close-up photograph of a small orange salamander in what looks to me like the forest floor of the California redwoods. Titled “Morning Walk,” by Sandy Gardner, 2008, card by Greentree Designs.

Whoever chose this card cared about me.

They cared enough to choose an extremely meaningful picture for me on the birthday card. They didn’t have to do that.

The bithday card was not this year, my 39th birthday.

With the dates written, it would have to be my 37th or 38th. If I’m doing the math right.

Things were already hitting the fan in a huge way at that point. I was being hurt by some of the same people who signed the card.

But back then, there were still enough people who cared about me as a human being and treating me like as a human being (or in some cases, at least, appearing to) that things were just… different.

Reading it was like reading a postcard from a universe I barely remember.

A universe that was already disappearing by the time the card came.

But there was a time, if I was hospitalized, Howard would take extra time to visit me in the hospital and help me get better and go home, and help me with the transition home, and give extra help to keep me out of the hospital, and extra help to make up for the fact that you never go home healthy and often need some extra support.

There was a time when they didn’t treat my second mom like she’s made of poison. To the point they won’t allow my caregivers in the same house as her for longer than 5 minutes, and have gone to great lengths to lie in order to avoid having to deal with her, because she complained about their medical neglect and they never forgave her.

But there was a time.

There was a time when some people tried to help me. Even case managers.

There was a time when things mostly worked.

There was a time when people’s efforts to help me were not thwarted by the office people at every turn.

There was a time when many people in the office were actually helping me.

Mind you.

The system was never good.

But it was never like this.

This card was signed by seven people.

They didn’t have to get me a card.

They were being nice. They were treating me like a human. Some of the time.

It’s different now.

It’s different now.

I don’t understand.

I don’t understand.

It’s different now. That’s all I know.