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

Accessibility is a waste of time.

I was told this today.

Cognitive accessibility is a waste of time.

Explaining my communication style is a waste of time.

Attempting to correct communication misunderstandings is a waste of time.

The only good use of my time is what my social worker says it is.

She gets to define what topics are worthy of conversation and what topics are not.

I don’t get to define anything.

She gets to define how much time we spend together planning my discharge.

She is talking about my options at discharge.

I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)

I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.

So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.

Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.

At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.

(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)

So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.

At any rate, it seems like people are playing games with me again.

And it seems like I am yet again being penalized for having developmental disabilities.

Because guess what?

When you sign on to work with people with developmental disabilities?

You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.

And you know what the solution is not?

The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.

Because it’s disgusting to treat another human being this way.

I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.

And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.

Howard social workers have to serve clients who try to hit them.

I don’t try to hit my social workers, at Howard or elsewhere.

If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.

No matter how much my communication and language offend them.

By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.

There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.

It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.

And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.

No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.

I’ve had enough of that for a lifetime.

Being in the hospital sometimes makes you think about what actually matters in life.

And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.

If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.

Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)

And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.

Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.

i’m a human being. FFS.

Advertisements
Posted in Developmental disability, disability rights, Self-advocacy

When I suddenly can’t do something I could always do, SOMETHING’S WRONG.

Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.

One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.

I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.

Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.

Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.

Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.

It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.

There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.

So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.

Posted in Self-advocacy

Once I’ve identified something I won’t do, stop trying to get me to do it.

I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.

I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.

If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.

I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.

Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.

I’ve been living in this body for a long time. I have:

  • Severe osteoporosis
  • Stress fractures of vertebrae
  • Healed hip stress fracture
  • Congenital myasthenic syndrome
  • Autistic catatonia
  • Severe adrenal insufficiency
  • Gastroparesis
  • Feeding tubes
  • Many other things

It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.

If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.

I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.

Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.

Posted in Developmental disability, disability rights, Self-advocacy

I need time. This is about accessibility.

Momo walking in front of a bunch of clocks with a tortoise.
Momo walking in front of a bunch of clocks with a tortoise.

I need time.

It takes me time to understand things.

It takes me time to make words.

It takes me time to respond to things.

To make medical decisions, I need the time to have a two way conversation with the doctor.

I need time.

Nothing changes this.

Shortcuts and attempts to speed it up slow it down more.

I literally walk faster than I run.

My brain is the same way kind of.

I get there. But I need the time. If it seems fast it’s because I’ve done it a million times already, many of them slowly.

Many times people assume based on the end product.

So if I have a complex thought they think it’s a fast thought.

I get to complex thoughts slowly usually.

Or they look complex. But they’re actually simple. But they translate as complex when they combine with language. Or people think lots of words means complicated. It doesn’t. It can mean I had trouble finding the right ones.

At any rate if people think they see complicated thoughts they often think that means fast thoughts. Or they think if I type or move fast I think and understand fast. Or they think fast in one context means fast in another.

None of those things are true.

I do best with things outside of what most people think like.

To get usual types of information and respond and have it be meaningful I need time. Lots of time. I get there but it takes a lot of extra time whether anyone sees that time or not.

To make it look fast I have to take dangerous shortcuts that harm me or confuse me.

I get confused easily.

I am good at not showing it. I suspect anyway. Sometimes.

But I get confused a lot. And it takes me time.

All of this is disability related.

I have developmental disabilities. I have cognitive disabilities. I have physical disabilities. All of these things are part of it in their own ways.

I usually tell people if you think of me as having a brain injury I make more sense. It’s the easiest analogy most people are likely to be familiar with.

But really as labels go I can identify a lot cognitively with people with dementia, stroke, brain injury, intellectual disability, epilepsy, autism, learning disabilities, developmental disabilities, and lots of other things. Some of which are labels I’ve received or qualify for and some aren’t, but there’s cousinhood going on big time even when I don’t. Cognitive kinship.

It’s the way thinking works and the obstacles we face in the outside world that determine our similarities and differences, far more than what diagnosis someone decided to give us.

That’s one reason I don’t like communities based in a single diagnostic label. I’d rather seek out familiar people wherever they can be found. And there’s something degrading about being told that it’s the labels the medical profession decided to give us that determines whether we find that kinship. That’s one reason the developmental disability self-advocacy community insists on labels as less important than in some other disability communities. We’ve found a kinship based on common experiences and common values and desires among other things. And we prefer that to being divided up by other people’s ideas of categories. And we’ve had our categories used to erase our humanity. We have lots of reasons.

Most people with developmental disabilities have cognitive disabilities of some kind. And many of us, for many reasons, take time to figure things out, time to respond, time.

This is not just a personal request. It’s about accessibility. Accessibility isn’t just about what people want. In many places, including here in the USA, it’s the law.

Accessibility is a disability rights idea.

It has to do with the fact that societies plan for some people to be there, take for granted that some people will be there, build everything physical and social around the strengths and weaknesses of that kind of person. And then other people aren’t planned for or taken for granted and there’s all these obstacles to our participation in society. We are the disabled people.

Accessibility is about making it possible for everyone to participate by removing those obstacles and barriers that shouldn’t be there, and by building things in ways that make it as easy as possible for us to be there and participate and be part of things.

That isn’t the world’s best description but I’m trying. Most people if they’ve heard of accessibility they’ve heard if things like curb cuts and wheelchair ramps and elevators. Things that apply to physically disabled wheelchair users mostly.

Cognitive accessibility is different. Most people haven’t heard of it. Many physically disabled people who are big on physical accessibility don’t even believe in it. It’s part of ableist bigotry against cognitively disabled people.

But it’s huge. Just like physical access it can be life and death.

And for many cognitively disabled people, TIME IS ONE OF OUR BIGGEST ACCESSIBILITY ISSUES.

You need to give me time to think. Time to understand. Time to respond. Time to have a back and forth conversation. Time to put things together. TIME.

And the time needs to be without pressure. Without judging me for needing more time. Without making me explain why I need time. Without treating me as demanding. Without acting like your time is so utterly valuable that to give me even five seconds is a giant favor. Without acting like cognitive accessibility is a favor at all. Without all kinds of bizarre conditions in order to qualify as worthy of your time. Without treating me like I’m asking for special treatment. Without using the fact you gave me extra time to demand other things of me later.

None of those things are how real accessibility works. Because all of those things treat me at best like I’m only welcome under certain conditions. Like I’m only welcome because you’ve decided you want to be nice to me today. That’s not welcome. And it’s not accessibility. A wheelchair ramp that disappears and turns into a staircase whenever a wheelchair user feels grouchy isn’t access either.

Time isn’t always easy to come by. But we can’t just make our brains run the standard way. We need more time than usual. Or we need the time we have used different than usual. Or something.

Not getting enough time is such a common obstacle to access for such a huge and diverse group of people. Yet time is rarely seen as an access barrier. And when people bother to give us the time we need, it’s treated like a favor. Or like something that isn’t actually necessary. Something that wouldn’t be a problem to take away. And it’s our problem if we can’t keep up.

I’m dealing with huge timing issues in the hospital. It affects everything from comprehension to communication. It’s interfering with some of the most basic parts of my medical care. I’m getting exhausted, scared, and discouraged trying to cram my abilities into a speed that’s impossible for me. And half the time I’m not even getting the time to explain what I need when it comes to time: people force the conversations so fast it distorts communication at best and they can’t even tell it’s happening.

I’m not the only one. I had a roommate who communicated complex thoughts when we were alone but couldn’t get three words out around family and staff before they’d all decide what she was thinking. That’s a lot of things including lack of respect, but part of giving her respect was giving her time.

Meanwhile I’m always getting lectured on how I don’t respect people’s time because I make timing mistakes directly related to being disabled. >_< From people who rarely give me time enough to understand or respond right to anything.

People turn my access requests into weapons against me. Requests for time become ways to paint me as demanding or entitled. If I’m granted time, people will later explode at me if I still don’t understand.

“I GAVE YOU A WHOLE HOUR OF MY TIME AND I’M NOT ANSWERING ANY MORE QUESTIONS!” A doctor who was paid for an hour of consultation about choices between different styles of feeding tube. Later he happened to be assigned to me for a totally unrelated procedure and apparently the “favor” of his paid time meant he couldn’t answer a simple routine question any patient would ask. All I needed to know was whether I was getting Propofol during the procedure. Instead he wouldn’t even listen long enough to find out what I was asking. And I got shouted at just before a stressful procedure taking place in a room that gives me PTSD flashbacks every time I see it. I ended up with somewhat dangerous cortisol issues all because he happened to be the same doctor paid to spend an hour with me once.

People go out of their way to tell me what a hassle it is to give me any of their time at all. Even when they’re paid good money for it. The same people go out of their way to insist I don’t value their time enough. Often based on a false equality. But also based on rules I can never predict or follow because they require cognitive skills I don’t have.

This leaves me in the permanent belief that my time has no value at all. But that everyone else’s time is worth something close to infinity.

Mind you, until recently, using words or ideas like “time being worth something” would never have occurred to me. I’m still not sure it sits right in my head. And I’m not sure if it not sitting right is for a good reason or not. It just isn’t a way I think of time. Not the way they seem to mean it. Of course I barely understand time at all. But this way still confuses me.

But I do understand the concept of everyone always has to take time for me. And that this is a huge waste if their time. Because I’ve heard that my entire life.

I don’t actually buy the idea that my trouble processing time makes me a bad person who doesn’t understand the huge value of everyone else’s time. Or a person who needs to be condescendingly taught about such things. Because that just doesn’t pass any of my mental smell tests. But the way I’ve been treated and what I’ve been told leads me to feel that way.

So one barrier to access for many of us is time. But an additional one is the belief that we barely deserve the time we get, don’t deserve more, and are just taking away from everyone else’s much more important time. These add together until we get less time and lower quality time (like when the person spends the whole time letting you know you inconvenienced them), when we need more.

I need time.

But this is more than a personal need. It’s an accessibility issue. It changes how I’m able to participate in society. Right now it’s messing up my medical care. It’s a huge important deal, not an afterthought. And I’ve rarely met anyone with developmental or cognitive disabilities where time wasn’t an obstacle to access.

So giving us time, when it’s possible, isn’t a favor. It’s an access issue. And be real careful declaring it impossible, because there’s usually a solution. A lot of the time when people say it’s impossible they really mean it’s not important to them or they’ve always planned their time with a lack of time for us just built in. I only mentioned possible because there’s some people with cognitive disabilities whose own time issues make it hard for us to do this for someone no matter how hard we try. But for most people that isn’t a problem. And there are often solutions when time is limited. You just have to start from the assumption this is both important and possible.

Time is certainly important to those of us who need more of it. And it’s an accessibility issue just as important as wheelchair ramps, curb cuts, or Braille. It seems like such a little thing but nobody wants to give it.

Posted in Uncategorized

Writing and reading

I appreciate all the offers of help, both personal help and also offers to help with the overall situation affecting lots of people. I appreciate it and am more aware of it and grateful than you may know.

I am able to write exactly what I write, when I write it, where I write it. Sometimes it looks like I should be able to respond. If I can I will. I’m operating at top capacity. I can’t do more. I have reasons for every way things end up. But I don’t usually have lots of choice how things end up. So I can’t always respond even when I want. And most things I want to write for any reason go totally unwritten. Or written wrong.

So here is what I have.

Please contact my DPOA (Durable Power of Attorney for Healthcare) Laura Tisoncik. Her email address is tisoncik@gmail.com. Also the Autistic Self Advocacy Network (ASAN). Or possibly Anne Corwin who is my other DPOA.

I’m putting all my effort into communication right now. What you get is my best. My brain works how it works. Not always to my own wishes or benefit let alone someone else’s. I can’t do more. I wish I could.

So please contact these other people if you want to help me and others. I am sorry I can’t always reply more directly, individually, quickly, or effectively. All these things are part of having developmental disabilities. Some of them are other things too. They’re part of why people like me have trouble getting help when we’re in trouble. Everything is designed like the obstacles we need removed don’t even exist. Then people expect us to function in ways we can’t.

Anyway I’m exhausted and want to write more but need to post this. Thank you.

Posted in Being human, cats, joy, Uncategorized

Friendship and Love and Resonance and CATS! A closer look at that picture.

This image has an empty alt attribute; its file name is 59903739_10157126139598618_7669595689709469696_n.jpg
Anne, Mel, and Igor, all with the same expression somehow a bit and looking kinda cattish.

It’s good to see friends.

I remember what’s underneath the visit.

I remember pain and stuff.

I remember emergency speech.

I remember what’s underneath though.

And that’s what matters.

Underneath there’s me and Anne and everyone.

I love Anne.

I love Cal.

I love Joelle.

I love Ruti.

I love Laura.

I love lots of people I haven’t named.

I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.

I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.

I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”

It’s okay to want to socialize.

It’s okay to socialize.

Never let a label determine what you think you should want.

Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.

Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”

I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.

Anyway.

It’s okay to want people in your life.

It’s okay to need people in your life.

Both of these things are equally okay.

It’s okay to like people.

It’s okay to love people.

It’s okay to socialize however you want to as long as everyone involved is really okay with it.

There’s a terrible kind of isolation very few people admit exists.

In systems like the developmental disability system sometimes all the people you ever see are staff.

For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.

And sometimes every single person I interact with for months is staff.

I actually usually like staff.

But.

They’re not the same as friends.

Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.

But it encloses you in the agency.

It wraps around you.

If all you see is staff.

All you see reflected back at you has an agency distortion.

Even if every single person individually sees you as a person.

This still happens.

It’s just not the same as having friends.

And.

I started having friends again.

Ruti. Joelle. Cal. Anne.Paragraph

And.

I was a person again.

And.

I realized I wasn’t anywhere near a horrible a person as I thought I was.

Lots of other things too.

I realized my love meant something to other people and that other people loved me.

Both of those things are important.

So many things about myself and my friends and friendship and being human.

And I started to feel human.

A little bit.

I felt like I’d woken up from a weird sleep.

It’s how I feel around people who just want to be around me and I want to be around them.

That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.

This picture isn’t just about pain, it’s why I wanted to post it again.

It’s about love.

It’s about being human.

I have a different kind of relationship with each of my friends.

With Anne it’s partly built on so much of our lives and brains working the same way.

If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.

Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.

And for that friendship that’s how it works.

So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.

And CATS.

Those are all in there too just as much as pain is.

I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.

And so many more things I can’t name.

There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.

This image has an empty alt attribute; its file name is 59903739_10157126139598618_7669595689709469696_n.jpg
Anne and Mel and Igor in Mel’s apartment.

The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.

I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.

Posted in Being human

Maple Syrple

Roses are red, violets are purple
Sugar is sweet and so’s maple syrple

Roger Miller

That quote will never not be hilarious to me.

THIS MATTERS.

A pot of violets an da bottle of maple syrple.

Little things matter.

Little things people consider frivolous matter.

Sometimes they matter more than most things.

They’re part of the humanity that I get denied every day.

Just being allowed to care about shit like this.

Being allowed to have little things like this.

You only notice when people start trying to take it away.

Trying to make it sound like it’s not important to have things like this in your life.

Sometimes they do crap like decide this is all your life can be, and that’s all kinds of fucked up.

But other times they act like you can’t have this.

Like you can’t or shouldn’t care about things like this.

Especially when you’ve got lots of serious shit going on.

People act like you should be super-serious all the time.

And only care about certain things.

And care about whatever the hell they think you should care about.

And so you hold onto shit like this.

Which is why it pisses me off even when people say that people shouldn’t post their dinner on social media.

Maybe their dinner matters.

It’s actually little things ike this that make up everyone’s life.

Little bits of the world.

They matter.

Noticing them matters.

Living them matters.

Life without them, especially forced life without them, doesn’t work well.

People need things like this. Different people need different things. But everyone’s got things.

I’ve loved the maple syrple line my whole life. Not stopping now.

When people share things like this with each other it’s being social about little things we care about.

And people who like to do that like to do that, and that’s fine.

And people who like to keep it private, that’s also fine.

It’s just, there’s all kinds of ways to deny someone’s humanity.

And denying people these little weird bits of life, it doesn’t sound like much, but it does deny part of your humanity.

And it has a bigger impact than you’d think.

So think twice before you make fun of people for posting things like this, or pooh-pooh it to people, or say that people who like things like this are stupid or something. You don’t know who you might be hurting, or how deeply.

People don’t understand what gets taken away from you.

And I don’t know how to explain.

All I can say is:

MAPLE SYRPLE MATTERS. PERIOD.

Posted in Being human, books

Compassion For Cities

My friends say that one of my best personality traits is compassion: I really care about other people. Everyone has some personality trait that’s good. I don’t like when people stereotype you based on labels (both official and unofficial) so that you can’t have a certain trait. As a person with developmental disabilities, I get a lot of autism stereotypes and a lot of intellectual disability stereotypes thrown my way. That means some people expect me to be a heartless mind and other people expect me to be a mindless heart. And they actually believe those expectations to be honoring my strengths. But that’s not necessarily how it works. There are autistic people with huge strengths or interests in social areas. There are people with intellectual disabilities whose main strengths or interests are intellectual. We don’t have to have a stereotypical set of strengths.

Arguably the most famous — in terms of sheer name recognition — person with autism in the world is Susan Boyle. Yet you never see her on lists of famous autistic people. Even though practically everyone everywhere knows who she is. She’s world-famous. And I always wonder if she doesn’t make the lists because her strengths stem from social skills. The way she sings, she has to identify somehow with the song. She has to form a personal identification with the character she’s potraying. If she can’t do that, she can’t sing well. If she can do it, she sings spectacularly. Her entire strength that makes her famous is based on social and emotional skills and empathy. And I suspect that makes her not so well-received even though she’s officially diagnosed with autism and everything. And she doesn’t make a big deal about her labels, so she doesn’t push the issue. But I always feel bad not seeing her on those lists2, and I always wonder how much of it is because her biggest skills are social and emotional and that doesn’t fit a stereotype of what kinds of things we can be good at.

And people will either doubt your disability or doubt whether you really have the strengths and interests you do. They’re always trying to prove that autistic people’s empathy isn’t real, that the intellectual achievements of people with intellectual disabilities isn’t real, that autistic people can’t be compassionate and people with intellectual disabilities can’t be geeky or nerdy or have cognitive talents.

And they’re always trying to say that different disabled people are allowed to have certain things and not others. Each type of disabled person is supposed to be missing one thing and have something else: Body, mind, heart, whatever. So we have bodiless minds, mindless bodies, heartless minds, mindless hearts, and whatnot, and that’s supposed to be a good way of looking at us! The truth is that however you divide it up, every person really has a mind, a heart, a body, a soul, whatever you want to call these things. I don’t personally divide people up that way, but if you’re gonna, those things are universal. Disability doesn’t mean one of them is missing.

So it’s important to me to be able to say compassion is one of my strengths without having to justify it against what type of disability labels people think of me as having. It’s moreimportant than usual because so many people say people like me can’t even have real compassion or empathy or anything like that. That we can’t have social strengths or social interests. And it’s totally fine to fit a stereotype, but it’s also totally fine not to. And it’s important to recognize that these are stereotypes, and that they’re wrong, that nobody can be confined like that.

So here goes: I really give a shit about people. I really, genuinely give a shit. It doesn’t mean I get everything right in showing it. It doesn’t mean that I’m some kind of model citizen or something. It doesn’t mean I can’t be an asshole. It just means that overall I do care about people. I am genuinely interested in knowing about people, learning about people, learning about how people’s minds and lives work who are very different from me. I like learning about people’s lives. I like learning about what people need and trying to make that happen. I like learning about people like me, people different from me, all kinds of people. I love documentaries that feature people, and biographies. I love thinking about what it’s like to be someone else.

And my extreme attachment to objects is the exact opposite of how people take it. People take that as, “You treat people like furniture.” No, it’s more like I treat furniture like people. At least, that’s a closer way of putting it than the way most people would. I automatically have always seen everything in the world as alive, having its own point of view, deserving thought and compassion. It’s not that I think rocks are little mirrors of human experience. Rocks are their own thing. Their perspective is a rock perspective, not a human or animal or “living thing” perspective. But I still see them as having one, as interacting, as feeling, in their own way. I can’t explain it in words and I’m not sure it’s possible. When I try, people get the wrong idea.

The cover of Dora Raymaker’s book, “Hoshi and the Red City Circuit,” a sci-fi detective novel I really like.

Dora Raymaker wrote a book called Hoshi and the Red City Circuit. I didn’t know what to expect from it. I was blown away. Because the main character has this connection with the city she lives in. With the place, and the spirit of the place. It’s not part of the main plot, or whatever you want to call it. But it’s there, throughout the whole book. On a sensory level, on a cognitive level, on a spiritual level, it’s just there. And she writes better than anyone I’ve ever seen, about what it means to have that kind of connection to something other people see as inanimate.

I have that kind of connection to places myself. There’s parts of California that feel like they’re just in my bones. The redwood forest, particularly Redwood Terrace, I have a connection that reminds me strongly of Hoshi. But also those hills, those hills full of dry yellow grass and oak trees. And the long flat expanses of the San Joaquin Valley, that most people think are just ugly. All those places are part of me and I’m part of them.

And that’s not a lack of empathy. It’s not giving human attributes to things that aren’t human. It’s extending empathy and compassion to things that most people in some cultures wouldn’t. It’s having those things more broadly, and there’s nothing wrong with that. There’s nothing wrong with not doing that, either.1 But there’s certainly nothing wrong with seeing the world the way I do, and I wish people wouldn’t misrepresent it as the opposite of what it is.

Go read Dora’s book though. Empathy and compassion for a city is a hard thing to pull off in words and Dora does an amazing job. I went into that book with sorta mediocre expectations and was blown away by what I actually found there. I don’t have the words to do it justice. I first was just trying to use it to keep out of delirium during a hospital stay last summer but it did a whole lot more than that. Books don’t usually hit me that hard out of nowhere and this one really did.


1Not everyone has to have the same strengths and interests. I’m only saying this because sometimes when I say I value certain traits, people think I mean that people are bad or inferior if they don’t have those traits. That’s not what I mean at all. I’m just valuing things that have been robbed of their value or recognition by people who don’t want to think of people like me as doing those things ever at all. I think it’s great that there are people who really aren’t interested in people and are more interested in abstract intellectual pursuits, who do fit certain stereotypes. That’s a perfectly fine way to be as well, and so are most of the ways people can be. I think it’s great that there’s different kinds of people with different skills and interests. I don’t think everyone has to be like me. I just )

2 Sometimes it can feel bad being on this kind of list. But what I don’t like about seeing her on those lists is what it means about how other people see her. I doubt she cares one way or the other, she might even find it slightly unpleasant. It can feel like being recognized for a diagnosis rather than being recognized for your work. And being recognized at all can be uncomfortable for some people: I always want people to see my art but I’m less thrilled about them seeing me. So when I say I feel bad about her not being on a list, it’s not that I think she’d feel better, it’s that I think people leaving her off shows something about how people see her.

Posted in medical, Self-advocacy

I am Neville Longbottom.

His friends taught him to stand up for himself.

They did something he thought was wrong.

He stood up to them.

They belittled him.

He said they told him to stand up to people.

They said “Yes, but we didn’t mean stand up to us.”

Everyone is telling me to listen to my body.

Yesterday my body told me it was trashed and barely hanging on.

Yesterday my body told me it was inches away from the whole medical house of cards falling in.

Yesterday my body told me that this was a thin line, not a slow slope, and that if things went really really bad, it’d happen fast.

So basically by the time anyone else saw it, it’d be way past time to have done something about it days ago.

I’ve been weak.

I’ve been dizzy.

I’ve been in excruciating pain.

My back’s been doing warning-signal type things.

I’ve had alarm bells going off.

I’ve had difficulty breathing that doesn’t even require doing anything, I just get weak and breathing feels like it takes a lot of work. (This is always a bad thing and often a sign my myasthenia or adrenal insufficiency or both are acting up, possibly combined or as a result of other things.)

THINGS ARE WRONG.

Oh and by the way STRESS IS BAD FOR ME.

Physical and emotional stress both make adrenal insufficiency worse and I’m on a lower dose of my meds than usual and not used to this dose yet (so not used to gauging how much stress I can take).

And I was having random stress responses that were… suspicious. (Suspicious as signs of something actually wrong because of the ways they don’t act. I have no good way of describing this in words.)

And I started getting the shits.

And I couldn’t bolus feed even close to the normal amount I can get away with, even though no amount is really good. So I couldn’t use that to replace the food I’m not getting.

And.

And.

And.

And.

And.

I could go on, if I had words, and brain, and all that. (BTW this means this story won’t be told as well or as thoroughly as it could be or ought to be.)

A lot is going wrong, and my body is sending pretty clear signals.

And I’m learning, as always, which signals to listen to.

So I knew something was wrong and I knew there were things I just couldn’t do.

And sometimes those things change, minute to minute, let alone any other thing.

Anyway.

I was having a shitty day, and then I learned that Howard wouldn’t let me eat, and the stress really set in. I tried every stress reduction technique I knew, and only some helped.

And mind you — everyone else seemed to be having at least a shitty day if not shittier.

But anyway.

By night.

Things happened.

I don’t want to describe the whole situation, doesn’t matter for this.

I was exhausted.

Two days ago I was doing laps around the ward, more than ever before.

Yesterday, for the first time, I did less than I’d done the day before. In fact i did none.

I spent a lot of time, on and off, just lying there really weak not moving.

They’d given me a hang-bag of potassium in the morning but assured me at some point that if it was really really bad my doctors would come by and say something. Everyone keeps saying my doctors not coming by a lot means good things.

This morning I found this result which is what made the potassium bag appear yesterday:

Electrolytes test result for May 30: Sodium with yellow highlight and one down arrow: 128 (should be 136-145), Potassium with red highlight and two down arrows 2.9 (should be 3.5-5.0), Chloride with yellow highlight and one down arrow: 77 (should be 96-110), CO2 with yellow highlight and one up arrow 37 (should be 22-32).

But I didn’t know that then. Nobody had told me there was anything too alarming about my potassium results. They’d been trying J-tube supplements for a little bit but those haven’t always worked in the past. Apparently for whatever reason the IV potassium through my port isn’t enough either because this is this morning’s labs:

Electrolytes test result for May 31: Sodium with yellow highlight and one down arrow: 130 (should be 136-145), Potassium with red highlight and two down arrows 1.9 (should be 3.5-5.0), Chloride: 96 (should be 96-110), CO2: 27 (should be 22-32).

So some other things are better, but potassium is worse.

Potassium has been slowly creeping down since before it went low, let alone critical. Everyone’s been telling me not to pay attention to the slow creep. At home, I would see a slow creep and turn it around with a slight amount of coconut water — not too much, not too little. I can’t do that here. I don’t have that level of control. I don’t know whether coconut water would’ve prevented this before it got low this time. But it very well could. And everyone was busy “not worrying about it”. (What I do isn’t worrying about it, it’s preventing something before it happens. There’s a difference.)

But at any rate, potassium going critical can certainly put a dent in my body’s ability to do stuff, let alone without getting enough food (which itself is probably contributing to the potassium).

Let alone all the other crap going on.

So I had lots of good reason for feeling like crap.

Anyway.

So.

Last night.

With all that going on.

And knowing the food situation, and seeming to understand it.

And having seen my leaky J-tube all the whole time I’ve been here.

And many other things.

My J-tube leaks and a bunch of other things. Leaks, soaks through, burns.

I need to go to the bathroom.

My pain levels go haywire.

All these things at once.

I call the nurse.

I get…

Incredulous laughter at the idea I need a walker to get to the bathroom, along with something like “You’re not really gonna use that walker, are you?”

No help on the way to the bathroom.

Come back, lie down, need to get plugged back into feeding bag.

Get plugged into feeding bag.

Then she says something like “I’m putting you to work.”

She’s gesturing at a bunch of drain sponges.

I try to treat it as a joke.

“You’re not really saying you’re gonna make me change my own dressing?”

Then it becomes an argument.

And she gets really tense about it.

And it’s like, telling me I’ll never be able to manage at home if I never manage to do this, and also that there’s no such thing as being able to do something sometimes and not others, and lots of other things.

And then demanding explanations.

She didn’t want an explanation.

She would never believe any explanation I gave.

So I told her so.

I told her, “You guys are the ones who told me to listen to my body no matter what anyone says. I like you but that means you too. And I don’t owe you any explanation, you wouldn’t believe me even if I could explain it perfectly, which I fucking well can’t right now.” Only it may’ve had the word ‘fucking’ in there more times than that.

I’m not taking this anymore.

If I say I can’t do something, it’s for a reason.

And we actually went through a long conversation I didn’t recount, in which she rudely dismissed anything I said no matter how verifiably real it was.

Shit like when I said “I’m trying to conserve my energy” and she blew me off. So when I finally said “Remember I was having trouble breathing earlier today” to try to impress upon her how serious it was for me to waste energy, she said something like “Oh don’t even start with that shit.”

So any amount of “fucking”s were well-deserved by that point.

Lots of things happened. Our interactions were better the rest of the night.

But that was wrong.

And.

I’ve been bending over backwards to accommodate everything about this place and being treated like I’m the one doing something wrong.

I’ve been pushing myself — not too hard, but pushing myself — more than adequately by everyone’s description. And when one day — one day — I could do less than expected, the immediate response was an attempt to manipulate me into doing more “for my own good” and then treating me like shit for resisting. The same people who have been telling me all along to listen to my body. I listened, they got mad at me for it.

I am Neville Longbottom.

I want to keep being Neville Longbottom. He turned out all right.

And I need to, if I want to survive a system that tells me my body is wrong when any time I get a clear signal of “Something’s badly wrong,” I turn out to be right. And that the answer to a situation where I’m overworked to the breaking point is always do more.

“Listen to your body, dear, you know best,” sounds well and good until I do it when the person wants me to be able to do more. Then all hell breaks loose. At this point, I’m gonna keep saying “I can’t means I can’t, whether or not I can explain exactly how it works, and I’m not gonna wait until I can explain it to you to refuse to do something I know is bad for me.”

And I’m worn out, worn out. I don’t know what I’ll do once I see a doctor (provided one comes in), because I’m putting all my spare energy into getting to that point), because I’ve needed all the energy I’ve conserved and I feel like I’m burning reserves I don’t have just to get me through until whenever the doctor comes. Which is unpredictable as fuck and nobody gives you clear answers.

I’m hungry.

And I’m Neville.

Posted in Self-advocacy

Explanations.

Believe it or not, this entire post was written before tonight’s events, where I stood up to someone demanding an explanation like this, for the first time. I have only finished a sentence that wasn’t finished, and added this paragraph, otherwise the post is unchanged. So it applies to today, but wasn’t written today or even with the expectation today would happen, so it’s weird. I might nor might not have the energy to write about today, I don’t know.

My memory is both shit and not shit.

Shit: I can’t bring up needed memories on demand.

Not shit: When memories happen for their own reasons, they are more accurate than usual.

So I say “My memory is shit” and “My memory is good” and both are true.

I can forget my back is broken. Or how to say exactly how it’s broken. (Once is a stable stress fracture which means kind of healed and kind of not in different ways, sometimes it’s called healed but it means something different than a normal healed broken bone. Once is a stress fracture that is not healed. First is T11. Second is T7, I think, maybe T8.) It’s easy to say “It’s broken twice” and that’s fine for a layperson but to a non-layperson that’s not specific enough. But I can’t always do specific.

Anyway. Recall is a problem.

Words are a problem in ways too complicated to explain right now.

In fact what I do want to explain in this post is why demanding explanations is so awful.

Today a physical therapist said a lot of things to me that were a very oversimplified view of things leading to a conclusion that was dangerous to me.

I told her I can’t possibly do a certain thing right now.

She wanted to know why not.

I tried over and over to explain and I kept stumbling over stuff.

It would have been really good if she’d tried to help me clarify what I meant.

Instead she treated me like I didn’t know what I meant, unless I explained.

So I kept trying to explain and failing.

Hours later, like over 6 hours later, I started beginning to figure out parts of things I could’ve said.

They were “obvious” things.

Things anyone should’ve remembered. Except I can’t.

I couldn’t.

I tried to contact my cognitive interpreter, saying she could explain.

She said she didn’t need to speak to my cognitive interpreter, and she and someone else talked to me in such a way where I couldn’t shove a phone call in edgewise.

And so no explanation happened.

What pisses me off about this entire situation is one I keep running into lately. It’s not any specific person, it’s lots of people.

It’s the expectation that if you can’t explain why you have trouble doing something, you have no right to assert you can’t do it.

And she is the person who told me to begin with.

She is the one who told me that I am going to have to be the person who figures out what I can and can’t do, and where to draw the line, and that only I can feel that in my own body.

But apparently that only counts sometimes.

And I don’t mind that she asked, I just mind what happened after, and how far it went into the world of making me explain things I can’t explain, the pressure she put on me.

And also the fact that this isn’t one time one person, it’s a pattern.

What did I remember and what did I forget?

I tried to tell her the effect of my back on my abilities. I did not do this well, especially with the huge improvements in some of my back-related skills that are the most spectacular to other people.

I neglected to tell her the effect of a constantly leaking tube on my abilities.

I tried to tell her my fears about services.

I neglected to tell her anything about my tubes at all. I can’t get out of here safely until my tubes are working better. I can’t function until my tubes are working better. And nobody on the planet can take care of these tubes properly as they are, unless the hospital magically grows better staffing. Which, despite the nurse’s strike and everything last year (which I was 1000% behind, btw), they just plain don’t have.

So what’s pissing me off:

STOP REQUIRING EXPLANATIONS, PPL.

If I say I can’t do something, just believe me.

DON’T REQUIRE THE EXPLANATION.

Don’t treat me like I have to be able to put things into just the right words, just the ones you can understand, in order to be worthy of being treated seriously about whatever I’m saying.

I’m sick of this.

Now I remember something that happened before I came into the hospital.

Quite awhile before.

Someone was asking me questions about back when I got my feeding tube.

Someone with a lot of authority over my life. Someone whose opinion, like the opinion of a physical therapist, could actually have a huge impact on my future and my services and a lot of other things. Not, in other words, someone I can afford to blow off.

They were asking questions about one of the most traumatic things that’s ever happened to me.

And then the dreaded thing happened.

They said, “But wait, that doesn’t make sense, why would a doctor say that to you?”

And first, how the ever-loving fuck should I even know the answer to that question?

Like — I can’t read minds. I don’t to this day know what the doctor was thinking.

But okay, I’m actually technically a researcher into medical discrimination against disabled people. Like, published and everything. I know some things. And in addition to formal research, I’ve done a lot of informal research into the opinions of medical professionals about the quality of life of disabled and nondisabled people and its impact on medical decisions. Including life and death ones like whether to insert a feeding tube.

So I’m actually — by the outside world’s standards — technically overqualified to answer that question.

And I’m conditioned to answer questions without even considering that I can say no.

So I dug into what I could dig into from that stuff.

And I gave the person some kind of answer about why a medical professional might be biased, what biases are common, and how those biases may affect medical decisions about people with developmental disabilities and people with feeding tubes.

Here’s the thing:

I SHOULD NOT HAVE TO KNOW ALL THAT TO HAVE A PERSON WITH IMMENSE POWER OVER ME BELIEVE A STORY THAT HAPPENED.

Especially since if they really want to go around doubting what I said, there are other ways of checking up on it. In the case of this particular doctor, he said this thing multiple times with multiple people in the room. Some of those people worked at the same agency as this person. Some of them were known to them in other ways where they could’ve contacted them. I would’ve gladly given them ways to do that if they really wanted to check up on this. Basically there were tons of people who heard this conversationA, knowing why wasn’t necessary to proving that the conversation happened.

But all this is overkill because.

This was all over one sentence.

And there’s something truly invasive or something about “I don’t instantly know why something happened, so if you don’t explain it to me, rapidly, then I won’t believe the person who is telling me it happened.”

Why is it my responsibility to explain or justify what a doctor said to me?

Nobody has to believe me, of course.

But I have a real problem with being held to a high standard of proof, in order to just have a fucking conversation.

Like, I don’t think I grill people that way.

It runs like: “Explain everything to me right now in precisely the way I want to understand it. Provide all the information I want in order to be satisfied that this conversation can even continue. And nothing you say will satisfy me anyway because I’m not actually asking for an explanation I’m asking you to wear yourself out saying a lot of words that I’m about to shoot down and demand further explanations for anyway.”

It’s not okay.

1 No, I don’t remember which doctor it was, nor does it matter for anything related to either the conversation then or this discussion now — I was just saying the doctor had said something and did not expect the third degree in the middle of telling a story where it was kind of a tangent anyway.