Are you sure you're autistic? Because I can't tell.

Another trip to the doctor, my tenth or so since January.  It had been a long time since I’d been in this office, well over a year since they’d seen me.  The nurse in the office was always hyper, cheerful, and bubbly, and usually made me laugh.

She was taking my blood pressure when she noticed my purple hair.  I told her I’d dyed it that way when I was a teenager, but let it go red (as it had been when she’d last seen me) so I could find a job.  Now I had decided that since I wasn’t going to get a traditional job and wanted to do autism advocacy, I was okay to dye my hair purple again.

“Well, that’s great!” she said enthusiastically. “And I’m sure those kids could use some visual stimulation.”  She went on a bit about autistic children needing help.

“Um.”  I bit my lip.  I was offended, but bad at confrontation, bad at explaining why I was offended.  I’d said advocacy, not working with children, and the assumption seemed to be that the only kind of work you could do with autistic people was with small children who desperately needed help (probably from normal neurotypical people who were saints for working with them). *

Obviously she didn’t mean to offend me, and I knew that.  It’s not that she was a bad person, or that she was trying to be rude, but the assumptions are some I see often, that seem to slowly eat at me.  And her intentions didn’t change the wrongness of what she’d said, or the fact that it hurt my feelings.

I chose my words carefully.  “Actually, it’s not working with children.  It’s like, disability rights stuff.  Before I got sick I was trying to start an Autistic Self Advocacy Network chapter in St. Louis.”

The nurse made a strange face.  “Disability rights?”

“Yeah.  I’m—actually autistic.”  I drew a deep breath, not able to read her expression to know what variation of a semi-offensive statement was coming next.

“Oh, you’re autistic?  Are you sure?”

I released the breath.  “Yes.  Yes, I am sure.”

“Well, honey, I can’t even tell!” she said brightly. 

She said other things, and I gave monosyllabic responses, too distracted and fearful now to be polite.  The nurse had done to me what several people have done.

People seem confused as to why I (or any other autistic or otherwise disabled person) would find that offensive.  It’s hard for me to explain in the moment because I need time to prepare that kind of explanation, and it deals with several different levels of ableism.

The first question, “Are you sure?”, may seem like a very logical question to some neurotypical people when speaking to people with mild autism.  It may not seem offensive to them when they use it, but it really is.  Why?  Because yes.  YES, I am fucking sure.  You may have to ask that question of yourself, “Am I sure she’s autistic?” but to me, the person who actually has autism, it’s something I live with every day and not really something I have to sit and wonder about anymore.  I did that wondering years ago, and I am over it the “Am I autistic or not?” stage.  If I wasn’t, I wouldn’t say, “I’m autistic.”  It was a really difficult conclusion to reach, but there is no longer any question in my mind that I’m autistic.

I realize that you weren’t sitting there with me when I was two and my mom was calling child psychiatrists, when I was six and one finally agreed to see me, throughout my childhood and teen years where it was very obvious something was wrong but we didn’t know what.  I realize you didn’t see the doctors give me the news, see the fit I threw, see the slow process of admitting I was autistic and discovering what it actually met.  I know you don’t realize what having autism is like for me.  But that doesn’t mean you get to ask me whether I might be mistaken.  (Unless you’re my psychiatrist or psychologist or something, but they’ve never asked me if I’m sure.)  You’re implying, by asking if I’m sure, that there is a chance I am so stupid I think I’m autistic when I’m actually not, or that you doubt I actually have the disability that I have.  The tone is often incredulous.  People just can’t believe that an autistic person could be like me, which is offensive in itself, and that really ties in with the statement they make when I inform them that I am sure I’m autistic.

You can’t even tell that I’m autistic?  I kind of figured that when you asked the first obnoxious question.  Now you’re again calling the legitimacy of my disability into question, again questioning whether I am capable of understanding whether I’m autistic, but something else is going on too. 

You can’t tell?  Why not?  Obviously I don’t expect anyone to be able to identify autism by sight.  I don’t expect every person to be an expert.  But what you’re saying is you expect autistic people to look or act a certain way.  That is so extraordinarily presumptuous.  I don’t conform to your ideas about autism because your ideas about autism are wrong.

My disability is a huge and undeniable part of my identity.  So it hurts when people say they can’t tell I’m autistic.  Which is funny because if someone said, “Oh, you’re black?  I can’t even tell!” most people would probably think that was offensive.  And I’m betting if I responded with, “Oh, you’re not autistic?  I can’t even tell!” that would be seen as rude.  In fact, people who are mistaken for being disabled when they’re not are often massively offended. 

Why is okay to say “I can’t tell” to an autistic person, but it isn’t allowed when the situation is reversed or it isn’t allowed when referring to other unnoticeable identities?  I feel like it’s just another example of how disabled people are seen as less human and less liable to be hurt than “real” people. 

It’s also an example of how a disability not being noticeable is supposed to be a compliment.  What the nurse was saying when she said, “Don’t worry, I can’t tell” was partially that although autism is bad, it’s okay for me because she can’t tell that I have it.  She’s actually saying, “Lucky you, you’re not as bad as other autistic people because your autism is not obvious.”  That’s so not a compliment!  You’re actually insulting me (and all other autistic people), and at the same time belittling my experiences as an autistic person.  In fact it’s so offensive that I’d rather someone say, “Oh, that makes a lot of sense then,” admitting that they actually noticed my disability.  I realize that kind of honesty is taboo to many neurotypical people, but at least it’s not offensive.

The appropriate response to someone telling you, “I’m autistic,’ is to say, “Oh, okay.”  And if you say something offensive, please apologize and I’ll forgive you.  If you aren’t autistic or aren’t close to anyone who’s autistic**, it’s probably best to assume that the person who is talking to you, who says he or she is autistic, who actually has the disability, probably knows way more about it than you do.  The message you should be taking away is that maybe autism doesn’t always present how you thought it did.  Maybe you should think about researching it if you’re interested.  But no matter how surprised you are, it is never okay to tell someone that they don’t look or seem autistic, or to ask them whether they actually are when they’ve already told you they are.  This goes for other disabilities as well.  No one deserves that, and the fact that you didn’t mean to be a jerk doesn’t mean it’s not a slap in the face.

So nod understandingly or express your surprise in a non-offensive way***, or do anything else, but please for the love of God, do not do what that nurse did.

So I said nothing to the nurse.  I could have.  I sure as hell wanted to.  But I’m a coward.  I felt horrible and scared and sick, and my mouth froze and it was hard to say anything.  I knew if I said anything I would be the trouble maker, because it’s the duty of disabled people not to hurt non-disabled people’s feelings by pointing out that they’re ableist.  I knew she didn’t mean to offend me, and I knew it didn’t matter.

That was three days ago, and every day since I’ve been plagued with irritation that I didn’t say or do anything.  Because I didn’t correct her she will never learn that she hurt me, or why it’s offensive to say things like that.  She got to go on her merry way, completely unaware of her mistake, and I am left to deal with the consequences.  Because this is not the first time this has happened.  It will happen again, and each time it happens it builds up a little more in my system and gets more annoying.

I can see how someone who is unaware of disability rights issues could look at this and think I’m just too sensitive.  But it’s part of a bigger freaking picture.  The reason oppression of disabled people happens is because ideas like this are floating around in the air, in one form or another.  Most people know that racism very rarely looks like swastikas and white hoods.  A lot of times discrimination is in the way we talk about people, as if they’re (even by no fault of their own) lesser than us, that they should be subject to greater scrutiny, that we’re normal and they’re not.  This more commonly occurs with very minor interactions like the one I had with the nurse.  To her the idea that autism is an acceptable neurology, the concept that someone might actually like being autistic or would be offended by someone saying, “Don’t worry, I can’t tell,” was so radical that she said those things to me and expected me to be either happy or okay with it.

Racism, sexism, homophobia, transphobia, religious persecution, ableism…all of these things start on the small levels where the nurse was with me, and they should be fought on that level.  I think it’s most important of all the fight discrimination on this level, because it’s the level we often overlook in favor of more obvious racists and ableists to point our fingers at.  But you can’t fight those people who know they’re discriminating and don’t care.  You can change how people think about things at the most basic level, and that can stop it from evolving into, “Well gays shouldn’t marry” and “Well, disabled people just need to get off their lazy asses and work.”

I am ashamed that I didn’t stand up for myself.  I’m embarrassed that I didn’t call out the woman who, however well-intentioned she was, discriminated against me and made me feel outcast.  Because if I can’t face these demons in my own life I can’t understand how I can expect to help other people fight.  And I’m going to have to work on that.  A year ago I was even more fragile than I am now.  I never wanted to confront anyone about anything, and people walked all over me.  I’ve come a long way and I can see I have further to go.

I’m not giving up yet.  So this is my response to the nurse and to everyone else who thinks asking those questions is acceptable.  She may never actually see it, but dammit, I have to say it. 

*I often wonder about this misconception, that autistic always means a child.  I don’t know if it’s that certain groups –coughAutism$peakscough- have so successfully pushed the message that autistic children need help that people can’t imagine that autistic adults exist, or if it’s just that even autistic adults should be referred to as children.  That’s the same reason people with developmental and intellectual disabilities are often referred to as having the mental age of a 4-year-old or something.  It’s misleading and obviously there’s a huge difference in how 4-year-olds and disabled people act, but for some reason people still do that.  I think it’s worthy of a post all its own, but I think Amanda Forest Vivian has already written on it extensively and far better than I could.

** No, you are not an expert because your second cousin twice removed is autistic and you see her sometimes at Christmas.  Assuming you know what autism is like based on your experiences with one autistic person is a fallacy.  I’ve learned what I have about autism based off not only my experiences, but on the experiences of many, many other autistic people I know. 

***When I say it might be okay to express your surprise non-offensively, I mean basically it might be okay if someone said something like, “Wow, I had certain presumptions about autistic people that must be incorrect and while I apologize for my unintentional prejudice, I’m grateful that my views were challenged and I can use it as a learning experience.”  Okay, it doesn’t have to be that formal.  Actually better not to do this at all.  I’m just saying that I am aware there might be a possible way for you to say you’re surprised to learn someone is autistic without being offensive.

The 7 people who ask you why you're in a wheelchair

I know this is true for pretty much any disability that’s visible in some way.  I’ve seen it happen to people with hearing aids, crutches, and the like, to people who have a noticeable limp or speech problem or anything like that.  I’m using a wheelchair in most of my examples because it’s one of the most obvious and universal signs of disability, most consistent with my own personal experience, and I just spent the weekend in Chicago using a wheelchair to get around.  I’ll use gender-neutral terms where appropriate.  I need to rant a bit and I hope at least someone finds this amusing.

1.       Curious Child (and hir mother)

Honestly, you probably saw this one coming.  When you wheeled into the room, Curious Child (usually between the ages of four and ten) looked up at you with wide eyes and an open mouth, and you could see the wheels in hir head turning.  You knew the question was coming eventually.

And Curious Child hirself not really the problem here.  Kids are naturally curious about the world, and it’s hard to be angry at people who genuinely don’t know better for asking questions.  The problem is the Curious Child’s mother, who is, of course, horrified that her child has asked you why you’re in a wheelchair.  You begin to politely explain to the child why people in general use wheelchairs, but the mother is panicking, afraid you’ll think she’s a bad mother who encourages that sort of thing, calling Curious Child rude and apologizing profusely to you while dragging her poor confused child away. 

I’m all for teaching kids that questions like that aren’t polite.  But at that age it’s an honest mistake.  My problem is that this method doesn’t really teach Curious Child how to interact with disabled people.  If the mother wanted to do that, a gentle explanation would be best.  I can remember my mother explaining to me, either in front of the person I’d inadvertently offended or in private afterwards, that that’s not a polite question, but I can never remember being immediately removed from the disabled person’s presence.  I learned how to behave appropriately around disabled people, in wheelchairs are otherwise, and not comment on their appearance.  And most importantly I had a healthy respect for the fact that they were just normal people.

But when Curious Child is strongly chastised for hir behavior, ze has only learned from hir mother that disabled people are taboo and you shouldn’t talk to them.  This is probably what the mother was taught as a child, which would explain a lot about her reactions to you.  Because this is the same sort of mother who will abruptly yank her child away from you if ze is anywhere near you, even if neither of you are about to run into the other.  The first few times this happens you’ll think it’s for your benefit, but it’s really not.  Watch a few times and you’ll see that the many mothers think you have the plague, and any contact with you will cause Curious Child to catch it too.

2.      Sympathy Addict

This person is nearly always female (at least 90% of the time), and usually over the age of 35.  She’s addicted to giving sympathy, and sometimes to receiving it back.  Sympathy Addict may follow you around, shaking her head sadly at the sight of you bravely wheeling your chair through the building (because that’s brave, clearly).  This may happen for a while before she strikes up a conversation with you.  I’m clueless enough that I won’t always see this one coming until it does, so it’s kind of a surprise when she asks why I’m in a wheelchair.

Sympathy Addict is interested in everything about me.  I am simply the most fascinating thing in the world.  My medical history is no longer a private matter but is knowledge that should rightfully belong to everyone around me, and any obvious casts or braces will be pointed out as if I didn’t know they were there (“Hey, you have a cast.”  “No shit.”).  I shift uncomfortably and explain why I’m in a wheelchair, answering questions about what caused it and what I’ve tried and so on, often while listening to Sympathy Addict making strange (comforting?) noises and saying things like “You poor thing!”  Sometimes she will try to describe her own medical problems in a desire to connect with you on an emotional level.  You broke your foot?  She once stubbed her toe on a dresser.  The two of you are practically related.

This isn’t so bad the first time you run into it, but after you meet several of these people a week, you will start to get tired of stopping whatever you’re doing and revealing your complete medical history to a stranger.  (Really.  I’ve thought about just handing out business cards.)  You’re a Bad Cripple ™ if you don’t indulge in at least some of these questions, and if you’re rude to Sypmathy Addict you’re probably not a Real Disabled Person ™.  The best method I’ve found of dealing with this person is to be conveniently in a hurry.  Just hope she doesn’t follow you around all day offering to open doors. 

More annoyingly, this person wants to be your own personal cheerleader, because you need more than anything to be told by a non-disabled person that You Can Do It.  Try to avoid their pep talks.  The more irritated and bored you are, the more elaborate they get.  Your family or significant other will get it, too.  They’re brave for wanting to be seen in public with you, or for ever associating with you, or for not immediately locking you into an institution at birth.  Hopefully your family or significant other doesn’t get off on this sort of thing, because some families of disabled people enjoy having Sympathy Addict around to justify their choices and praise them for knowing a disabled person.  Family members who enjoy Sympathy Addicts, or who are Sympathy Addicts, are extremely annoying.

3.      Amateur Doctor

A specific type of the Sympathy Addict, it isn’t enough for this person to just listen and make strange cooing noises as you explain your disability.  Amatuer Doctor doesn’t have to be involved in the medical profession at all.  Ze doesn’t need to know anything about your disability, or even about the human body in general.  But as soon as your problem is described, have no fear, Amateur Doctor is here!

Amateur Doctor has the answer to all your needs, real or presumed.  Ze knows the right question to ask (Just like a real doctor)!  And once Amateur Doctor understands your diagnosis or has rediagnosed you, ze can roll out so many suggestions for treatment that you’ll think you’re watching TV on a weeknight at four AM.  Amateur Doctors often approached my younger brother when he was in a wheelchair, and when they found out he had brittle bones, they usually glared at my parents and reproachfully asked why they didn’t feed their kid milk.  It really pissed my mom off, because these people seriously thought that we and all of my brother’s doctors were so stupid that they hadn’t thought of that first.  It doesn’t even matter if they’ve heard of your disability before.  They still have an answer for it, because Amateur Doctor has a solution to every problem.

Oh, you’re so brilliant, Amateur Doctor.  I could never have thought of that on my own. Yes, I will certainly ask my doctors for some x-rays on my back, and I’ll add them to the pile of x-rays I have sitting around at home.  Yes, I’ll try some Aspirin, because I need some more drugs and am too stupid to know how to deal with pain.  Yes, I’m sure that homeopathic remedy you took for your cold would do wonders for my broken leg.  Oh, Amateur Doctor, no amount of medical training could compare to your years of experience in telling disabled people what to do.  (And after all, you did once take a biology class in high school.  Never mind whether you passed it.)

4.      Busybody

Busybody uses similar methods to Sympathy Addict and Amateur Doctor, but is a little different.  There is nothing polite about the way Busybody openly gawks at you, like ze has never seen a disabled person before, and ze loudly and obnoxiously ask questions about your medical history.  Extremely personal questions are not off-limits.  (One seriously asked me how I had sex.)

To Busybody, disabled people are not people.  It may be that they don’t think of most people as real, or they just don’t think or care about how their actions affect other people.  But to Busybody, you are not a living, breathing person.  You are an object there for their entertainment.

Again, failure to respond properly to this person makes you a Bad Cripple ™.  Luckily as soon as Busybody’s questions are answered his or her attention span will wane and you’ll notice them staring off into the background and not even listening to you anymore.  You’ve served your purpose already.  They seriously won’t notice now if you slip away. 

5.      Detective

A specific type of Busybody.  Detective is determined, by whatever means necessary, to get to the bottom of why you’re in a wheelchair.  Hir interest wanes less quickly than a normal Busybody’s, and you will soon wish that wasn’t the case.

The problem with Detective is that immediately upon seeing you, ze has an inkling that you don’t really belong in that chair.  Ze will ask you rapid-fire questions that make you feel like you’re in an interrogation room.  Any time you run into Detective afterwards, you’ll see hir staring at you and waiting for you to slip up.  Because Detective doesn’t believe you’re a Real Disabled Person ™.  You’re just faking it for the attention, because clearly you love fighting with the oppressive architecture of every building, and clearly you love answering stupid questions asked by nosy people about your own body. 

The best part is when Detective thinks you’ve finally been caught in a lie.  If you can walk at all, or at least shift from the wheelchair to a chair or bench for more comfort while your group rests or eats or something, you’ll see Detective’s face light up in an Aha! moment.  Ze caught you, buster.  The Disability Police are coming to take you down to the station now, because you’re a liar and a faker.  The fact that you can move at all is proof that you have no disability.  (Detective, by the way, sees the world in black and white, so there’s no escaping this.  You’re either all disabled or not disabled at all.)

If Detective confronts you publicly about it, people who don’t know what conversation you had earlier with the detective may assume that you really are a faker.  I mean, Detective is right, you do have a wheelchair and you really aren’t in it now.  Even if these people don’t care about disability in any way under normal circumstances, suddenly you’re the worst person in the world, stealing priority seating, parking spots, and toilet stalls from Real Disabled People ™--even though they (and Detective, too) would gladly do the same any time it’s convenient. 

There’s really no escaping this one.  Detective wants too badly to prove ze is right about you, because although Detective doesn’t want to admit it, ze doesn’t think Real Disabled People ™ exist.  There are just scroungers like you who pretend to be disabled or exaggerate for their own personal gain (like the priority seating, parking spaces, and toilet stalls you really can’t use anyway because able-bodied people get to them first).  Even if you’re not on government assistance, Detective is convinced that you get special privileges for being disabled and wishes that those privileges were hirs.  We could pause to ponder the psyche of Detective and ask why this person is so suspicious and angry, but it really wouldn’t do any good.

6.      Conspiracy Theorist

Like Detective and Amateur Doctor, this one asks a lot of questions and is suspicious—but not usually of you.  Conspiracy Theorist, in addition to offering what they consider sage advice, will suggest that what you’re doing to treat your disability is bad for you in some way.  Although often well-meaning, this kind of person can become quickly exhausting and hard to converse with. 

Conspiracy Theorist Type A is usually kind. but full of bizarre and just-plan-wrong ideas.  Ze doesn’t realize what ze is doing is exasperating you.  Ze will, upon hearing you have had cortisone injections, advise you that doctors who suggest them are quacks and you should either take this supplement or just wait for the pain to stop, because your body makes your own cortisone.  Ze often thinks, even when presented strong medical evidence otherwise, that your disability has probably worsened because of what your doctors have done wrong.  Pain pills?  What are you thinking?  Those are poison.  What you need is some chamomile extract, or you need no medicine at all because you’re probably really normal anyway.  Unfortunately for you, Conspiracy Theorist A has no idea why this kind of conversation would upset you or how frustrating it is to hear again and again that you don’t need/shouldn’t take your medicine, and because ze hasn’t been purposely rude you are stuck in the (incredibly uncomfortable) conversation until they’re ready to move on.

Conspiracy Theorist Type B is aggressive and considers you to be just as guilty as your doctor.  Why?  Well, it’s just ridiculous that you didn’t get Educated and Enlightened like Conspiracy Theorist B, and frankly you kind of deserve to be in the horrible pain you’re probably in.  Hir message is basically the same as that of Conspiracy Theorist A, but everything is your fault, even if you know otherwise.  Conspiracy Theorist B may be belligerent enough that you don’t mind seeming rude by ending the conversation abruptly.  But since Conspiracy Theorist B is telling you The Truth, they will only get angrier as you ignore or argue with them.  Because now you’re not just an idiot who isn’t Enlightened, but you’re part of the problem and are probably a Big Pharma Shill.  But it’s okay.  You’re probably not really disabled anyway, you’re just faking for attention.  (It’s presumed that Real Disabled People ™ fawn over every word these people say.)

What’s the difference between the two Conspiracy Theorists?  You might be tempted to say there’s a huge difference, but there’s really not.  The two share the same philosophy and both are equally wrong.  Even when Conspiracy Theorist B is over-the-top, you can find Conspiracy Theorist A defending hir.  The only difference between the two is tactics—one is polite and makes you uncomfortable and one is rude and makes you uncomfortable.  In fact, they might be the same person having a good day or a bad day.

  

7.  Asshole

There is really no better term for this person, because Asshole refuses to even talk to you, except maybe in simpering tones and treating you like you're a baby.  Asshole probably assumes you're intellectually disabled (because all disabled people are probably intellectually disabled in Asshole's mind), and Asshole assumes that intellectually disabled people should be spoken to in baby talk.  

That by itself is positively revolting, but Asshole usually doesn't talk to you.  You're too stupid to give hir answers.  Asshole asks whoever is accompanying you, or whoever is standing nearest to you if you're alone, what's wrong with (him/her/it).  Asshole often continues addressing people around you no matter how many times you remind hir that you're there, you understand what ze's saying, and you don't appreciate hir attitude.  

Asshole is often combined with other types of people on this list, but the most distinguishing feature of Asshole is hir complete refusal to accept you as a human.  You will leave a conversation with Asshole feeling thoroughly humiliated and losing faith in humanity.  Good luck because there a surprising amount of Assholes out there. 

That’s it for now.  Let me know if you think of any more and we can do a continued list later.

My spine is a traitor.

I was a little enraged when Sean said, “Why don’t you take another Vicodin?”

I told him no.  He’s been making helpful suggestions constantly over the last few days and even though I knew he was trying to help me, each suggestion pushed me further towards breaking point.  The Vicodin I’d taken an hour before was still coursing through my system and I could feel it, but through the sleepy warmth my back was still screaming in pain.  I knew I was running out of pills.  The label said to take one three times a day, which meant every eight hours, but I had to take them every four and I was still in a lot of pain. 

The label also said no refills.

“Kat, you’re sad.  I don’t like it when you’re sad.”

“It doesn’t matter,” I said. “It doesn’t make the pain better anyway.”

“You need to take your medicine.”

“I only have 15 pills left.  I’m taking five a day.  You do the math.  I won’t last three more days at this rate.”  I buried my face in a pillow.

“The results from your MRI will be in soon.  We’ll find out what’s wrong with you and everything will be okay.  Your doctor’s going to call in for refills.”

“And he’ll give me 60 again.  That’ll last 12 days.  And it’s still not going to help.”

The conversation degenerated from there and once again I was left crying in my bed, praying for relief, while Sean was angrily killing elves on World of Warcraft.  I was in love with him, and right now I was dependent on him for all of my care.  But the pain made me prone to meltdowns and prone to arguments, and the pressure of taking care of me was too much for him sometimes. 

I’d had the back pain for years, longer than I can remember.  I can remember being 12, on vacation in Canada with my family.  At Niagara Falls I couldn’t walk any longer, and I sat down next to a rock and cried.  I had the impression then that no one believed me.  My brother had brittle bones and he was constantly breaking them, and maybe they thought that I was jealous and taking a cue from him—the only reason I was even in Canada at the time was that Canada was the only country that had drug trails giving bisphosphomates to children with his disorder, and I’d gone up with him for the first time and spent a week watching him get IV’s stuck in his arms at the Shriner’s Hospital in Montreal.  By that time my back pain had been going on a while. 

I spent years feeling invalidated about my pain.  No one took it seriously until I was in high school.  I was sick with some sort of respiratory infection and they wanted to x-ray my lungs.  I stood with my back straight against a white plastic board and sat down when they went to review the pictures.  The tech came back to the room later, irritated, and said I should have told him I had scoliosis.  It made him think the x-rays were bad at first.

That was the first time I had ever heard that I had scoliosis, and it was news to my mother too.  She cried in the car on the way home.  I’d been obediently taking four ibuprofen every time my back hurt for years by then, and I wasn’t that surprised by the results of the x-ray.  Nothing was really done about it because it seemed like my self-medication was working well enough.  I’d have occasional episodes where it was extremely painful and I’d usually just suffer through it.  If I was lucky we’d have some old Tylenol with codeine lying around and that would give me more relief.

The pain was worse after a lot of physical activity, or during my monthly period, or if I had to carry a large load of books at school.  I was in two car accidents in high school and another in college, and each briefly intensified the symptoms.  I took karate in junior high and high school, eventually rising to brownbelt, but I was constantly injured and taking long breaks from training.  I eventually dropped out of it.  My weight was an issue since about 5^th grade, but I gained more.  My doctors sometimes told me all my problems would go away if I lost weight.  I couldn’t lose weight without injuring myself, and the diets they recommended left me with few options for food that didn’t give me sensory issues.  I coped with the back pain, sometimes more effectively than others.  When it was bad I could count the vertebrae that hurt—always the same three, the bones aching and feeling as though they were crushed together.

I was used to dealing with it when I got to college, especially after I was put on Vicodin for the first time.  I was originally prescribed low-dose Vicodin for a bad ear infection, and I was surprised that it made the back pain disappear.  I was on a higher dose when I broke my foot (I had a serious avulsion fracture of my fifth metatarsal that required surgery and caused me to use a wheelchair for three months), and I was prescribed it again when I had my wisdom teeth removed.  I had enough left over after those issue were over that when my back pain was really horrible and ibuprofen failed I would take a real painkiller. 

I started dating Sean in October of 2009.  Not long after that I noticed a new and disturbing symptom.  I had strange pain in my muscles of my lower back.  They were tense and uncomfortable.  And there was a different pain, one in the vicinity of my backside but several inches in, as if the pain started in the center of my leg.  It felt like a pinched nerve and it made it hard to walk.

Sean knew what this pain was.  He told me it sounded like I had sciatica.  He’d had sciatica for a few years.  He got it during the winter and it caused him to walk funny for a couple months, and the muscles in his back would tense up.  By March it would be so bad his back just gave out, and then he’d go to the doctor for painkillers and a shot of Demerol. 

My sciatica wasn’t just a winter event.  It happened the more I walked.  The sciatic nerve was the one that was inflamed, and that’s where the pain was worst.  But I had pinched nerve sensations all the way down both legs, usually worse in my right leg.  The misfiring nerves caused my muscles to randomly spasm.  I saw the doctor.  I walked out with Flexeril and Tramadol, which kept the pain under control pretty well.  Sometimes I’d need it a couple times a day; sometimes I wouldn’t need it for two weeks.  When I ran out and needed more I’d go back to the doctor. 

I felt guilty for taking painkillers so often.  Ableist society had taught me that I didn’t want to be one of THOSE disabled people, the people who only pretended to be disabled or exaggerated their problems for pain pills.  Disabled people who took too much pain medication were fakers, liars, and bad people, the same people who filed for disability payments because they were too lazy to work.  I think I was less worried about being judged and more worried about the pain medicine magically affecting the state of my soul and making me into one of those horrible people.  It’s strange because when I talked about other people I would say that those people didn’t really exist.  I know disability fraud is rare and I know how damaging those stereotypes are to disabled people.  I’m passionately against perpetuating that stereotype.  So now I’m ashamed that I’m ashamed of the pain medicine. 

I worry sometimes that I’ll get addicted, even though I am taking the medicine for a legitimate reason and I’m not abusing it.  When the pills I take wear off a few hours later and I need a new one, sometimes I think it’s not because the medicine wearing off means I feel the pain again, but because I’m going through withdrawal and it’s causing pain.  I tape Intervention so when I feel like this I can remind myself what addiction looks like and try to be less critical of myself.  It’s negatively affecting my health.  When I realized I was allergic to the Tramadol after taking it nearly a year, it took me weeks to get around to asking my doctor if he could prescribe me something different.  That I didn’t crave it at all or go through withdrawal during that time is proof that I’m not addicted. 

There are three pains in my back, although I can feel one, two, all three, or none of them depending on the week.  There’s the bone pain in my upper back, the muscle pain in my lower back, and the nerve pain in my lower back and legs.  I know the difference between all of those, and I’ve had it long enough to know the difference between bone pain and muscle pain.  The ER doctors who see me every several months when I’m in intense pain will try to argue with me and say I’m probably exaggerating and the pain in my bones is just muscle pain.  I’ve never been able to be very forceful arguing with doctors.  My regular doctor is busy and I haven’t been able to sit down with him and explain it all step-by-step like I just did.  I normally complain about the sciatica when I see him. 

Several months ago I went to my doctor and he decided I needed physical therapy, x-rays, and an MRI for my sciatica.  I went to physical therapy but it didn’t help much, and the therapist said I needed x-rays and an MRI so they knew what was causing my pain so they could treat it better.  I went to the hospital for x-rays.  I was having one of those days when my autism seems worse than normal, and I was nervous, jumpy, and communication was a chore.  The girls in the radiology department took me to get changed into a hospital gown.  I changed, got the x-rays done, and then they took me to get me changed back into my own clothes.  The two girls stood by the door and told me that they would be there when I stepped back out and they’d take me back to the waiting room.  When I stepped back into the hallway, though, they were gone.  I walked through the department, lost and apparently alone, until I found the waiting room, which was empty.  It was like everyone had gone to lunch and forgotten about me.  I couldn’t get the MRI set up until the results from the x-ray were in. 

I turned 22 not long after.  My insurance lapsed until Obama’s new laws went into effect in January.  During the lapse I got a letter from my doctor saying that I would be dropped from the practice for noncompliance if I didn’t get my x-rays done.  Apparently the radiology lab never sent them to him.  I was irritated, but I was too frustrated to call the doctor about it.  It wasn’t like I could afford to go back to the doctor anyway.  When my insurance came back I was sick and nearly had to be hospitalized.  I saw my doctor again and he said that he wouldn’t drop me from the practice, but I was too preoccupied with the illness to think about the x-rays and MRI.  I got better and it was still in the back of my mind.

But last week the pain in my upper back took on epic proportions.  I came home from school every day and collapsed, sobbing, into bed.  I had most of a bottle of Vicodin.  I had a few old Flexerils.  I had a heating pad.  None of that prepared me for what was coming.  Every day made the pain worse.  I went from three to five Vicodin per day.  I had trouble walking more than a few feet and carrying my backpack to school was an incredible feat.  I couldn’t drive to the Metrolink, or walk from the Metrolink to the main school building.  Sean had to drop me off at school every day.  On Wednesday the effort of standing in line and getting lunch was too much for me and I nearly fainted.  Thursday morning I was in such incredible pain I couldn’t go to school.  I spent most of the next three days in bed, getting up only to go to the bathroom.  I couldn’t pay close attention to anything, and I watched TV and surfed the Internet.  I tried to write an e-mail but it was hard to concentrate on actual tasks. 

My mother told me to go back to my doctor.  I told her I felt like no one cared about how much pain I was in.  Mom called the doctor and asked again about the x-rays.  My doctor’s office finally got the hospital to send the x-rays, but there was nothing abnormal about them.  They set up an appointment for me to have an MRI.  Everyone seemed nervous about how I would handle it but I was just relieved to see them taking my pain seriously again.

I went for my appointment on Friday.  I told the MRI tech that I was autistic and I’d need ear plugs to make sure the noise didn’t bother me.  Sean came with me but he had to wait in the radiology lab waiting room.  I had to go in alone, and for the first time I started to be frightened by the impending scan.  When I walked into the room where the machine was, I immediately became terrified.  I was staring at a plastic tube with something that spun around it and it was making loud whooshing sounds that hurt my ears.  The tech had to wait a couple minutes before I could go into the room.  The changing stalls were in the cooler room and even there it was unbearably noisy, and there I had to walk over vents in the floor in bare feet and a hospital gown with cold air blowing up under me.  I laid down on a stretcher and put ear plugs in and headphones over those.  I couldn’t hear the whooshing or the tech talking.  The stretcher rose and slid into the plastic tube.  I was only an inch away from the top of the plastic, and I couldn’t move.  I panicked but held still.  And when the machine started running the noise was terrible even through the ear plugs.  It took 17 minutes.  When it was over I was shaking hard and had to sit down.  It took me hours to recover.  I had a miserable weekend at home in bed, arguing with my fiancé over whether I could take pills.  I couldn’t cook or clean or fetch things from the other room.  Sean had to take care of me.

That was last weekend.  I went to school today and hoped the refills I’d ordered would be granted by my doctor.  My mother texted me to let me know that the results of my MRI were in—I had bulging discs from T10 to T12 and degeneration between L4 and L5.  I cried.  After all these years I finally validated what I’ve been telling people—the two locations of pain, the three vertebrae in my upper back that I could count, the fact that the pain was serious.  And now I know what’s wrong but I don’t know what they’re going to do with me.  Cortisone shots maybe, which might mean less pain pills.  I just want relief.  I want to be able to concentrate on things again.

I’ve been away from my blog for months.  I’ve been away from planning my ASAN chapter.  I’ve neglected a lot of projects while I was healing and I haven’t healed yet.  I’m scared.  This means I’m going to be physically disabled for the rest of my life and all I can do is try to manage the pain.  I thought I was prepared for this news but it just feels devastating right now.  Right now I can feel the injured vertebrae in my upper back screaming and there’s nothing I can do about it.   It’s going to be a while before I can get used to the idea that this will be here forever.  I’m not ready to accept it yet. 

But I know I’ll accept it eventually, like I did with the autism when I found out I had it, and like I did with my hearing.  It’ll just take a while.  The autism and otosclerosis don’t hurt.  I don’t have to think about them at every second of every day.  And right now I can barely think about my fingers on the keyboard or what I’m typing.  That’s in the back of my mind.  The foreground is all thoughts of the pain.