Not Handicapped, Not Disabled, Not Mentally Ill

A few days ago, in the midst of talking about the effects of the fire on my life, I slipped in the news that I now have a label – “autistic.” I’ve had the label “high functioning” forever, but there was nothing after that modifier to explain why functioning well was in any way exceptional. And now there is.

Let’s back up a bit. Ever since I was a child, my mother has joked that I am her “crippled” child, because I’m left-handed. “Poor baby, you can’t do it because you’re using the wrong hand,” she’d say when I was struggling with something like using a can opener or pair of scissors. I knew she was joking. I knew she didn’t really think of me as disabled, but it left me with an important piece of information.

Differences are something to be mocked and pitied.

It doesn’t matter how one sees oneself. If others see you as being less than them, they pity you. And any difference that’s not commercially exploitable (extraordinary good looks, athletic ability, brilliance resulting in salable products) makes you less than.

I’ve had to adapt, adjust, and mask all my life, and for most of my life, it didn’t help. When I was a child, my intolerance for enormous family functions, for overstimulating environments, for physical discomfort was seen as my being willful, and I was lectured, yelled at, sent to my room. As an adolescent, I was ostracized, humiliated, and ridiculed. As an adult, I have been passed over for promotion, given poor job performance reviews (not for the quality of my work, but for the quality of my social interaction), and been largely discounted.

When I was a kid, there was no such thing as autism.

There were disruptive kids, angry kids, bored kids. They were behavioral problems that kids, with proper guidance and discipline, would grow out of. The lack of any kind of clinical label meant that nobody felt sorry for us or thought we needed any kind of special consideration apart from detention.

This morning, my sister sent me this article, and when I read the title, I immediately felt insulted. Now there’s a label for me that other people use for themselves. I don’t know what to do with that label, because it feels to me like another way of manipulating people. Just as I reject the “victim” label after the fire, I reject the “autistic” label, not because I don’t fit all the criteria, but because I can’t stand the fact that people who didn’t like me or didn’t understand me before will suddenly cut me slack because of that label. Because they think that they know something about me now that they didn’t before. And that’s not true.

If you’ve spent any time with me, you know as much about me as there is to know. Any label applied to me – “writer,” “depressed,” “autistic,” – is irrelevant because labels are stereotypes that homogenize everyone to whom they’re applied. I’ve spent years trying to tell people “yes, I’m [insert label here],” only to have to explain that it’s true, despite my not fitting their notion of what a person with that label looks or acts like.

If you have known me for a while, you know that I’m not disabled, handicapped, mentally ill. I’m just me, and I’m just fine, regardless of what label you choose to use for me. And if you feel the need to apply those labels to me, I have a few of my own that I’ll apply to you.

The Popularity of Tragedy

We’ve all seen it. A beloved celebrity dies, and people who have never once mentioned that celebrity’s name, let alone their work, is utterly distraught and demands comfort. Someone at school dies and people who had never known the kid’s name, let alone said as much as “hello,” are front and center with their disconsolate weeping. Disaster strikes, and people who were not only not affected, but who didn’t even know anyone who might have been affected need to insert themselves into the event. People are fascinated by tragedy, and there is something about being close enough to touch it that seems irresistible to people.

When we were evacuated, close friends and family called and texted. It was lovely to know that people were thinking of us, but this was in the first couple of days after we’d left our house, and before we knew whether we still had a house (spoiler: we didn’t), I didn’t know what to say. I was overwhelmed by the need to give them clarity I didn’t have. I stopped answering the phone.

Next came people at a bit of a remove from me. People I knew, but with whom I’m not especially close. They expressed support, they said very kind things, they made offers of staggering generosity. Nearly everyone wanted to know if we needed anything, but with our very most basic needs (shelter for us and our four dogs, food, money to purchase necessities) already met, I didn’t have the least idea what else I needed. People came forward with fabulously helpful resources – the name of a public adjustor firm, a recommendation for a builder. These things were solidly helpful, and not resources that everyone would necessarily know about (I’d never heard of a public adjustor prior to needing one, so why would anyone else?), so I was utterly grateful for the information, but still warmed by the other offers.

Next came people I didn’t really know. This was the weird bit. We’ve heard from the daughter of our real estate agent (a woman I’ve only met a couple of times) who now lives in New Mexico. We got a very surprising and incredibly sweet call from a woman whose father had built the house we lost. She grew up in it, so the loss felt very personal to her. She offered to come and help us clean up, and I suspect that her offer was motivated by a desire to walk the property and see what was left of her childhood home, but that didn’t make it any less touching to me.

But now we’re coming to the last group, which makes an interesting coda to those first days after we evacuated. Now I’m starting to see Facebook posts by people who used to know people who used to live in the area, people who vacationed here once and remembered it fondly, people who used to live in another town that caught fire but not when they lived there. These folks are expressing trauma and grief of their own, not even on behalf of people who’ve actually been affected.

As in the first days after our evacuation, I don’t know how to process the feelings of someone who is claiming the same trauma I have. Honestly, I don’t really think I have to do anything, but there is a part of me that’s a little angry that there are people demanding comfort and sympathy that I’m uncomfortable receiving.

I have gone shopping for necessities nearly every day since we got here, and not once have I told a store clerk “I’m buying new sneakers because my house burned down.” “I’m buying dog dishes, toys, and food because my house burned down.” “I’m buying storage boxes and a new hairbrush because my house burned down.” It seems manipulative to me to put that information out there, not because it’s at all relevant to our interaction, not because it’s a way of making small talk, but because I’m expecting to receive something for it – comfort, sympathy, a fat discount.

It makes me wonder what the people who need to feel a part of trauma they haven’t experienced are looking for, and whether maybe I should start looking for that thing, too.

Staying Still Before Moving Forward

I’ve replaced another couple of things – my microphone and my external keyboard.

There are tons of other things we’re nowhere near to replacing, but I keep looking at them and having the same reaction. I have an absolute need for this stuff, but none of it looks like anything I want. Dresses, dining room tables, rugs – none of them are what I want.

Consciously, I’m not even thinking “it’s not like the old one!” Which just tells me that the hurt is still subconscious, and that I’ll need to do a little more mourning for the life I had before I can move forward on rebuilding.

When I think of my house, I feel numb. It’s not all the time. I am still laughing with my friends and taking joy in walking in the park with the dog, etc. I’m excited about planning what the new house will look like, but when I think about the old house and everything in it, there’s just…nothing. No sadness, no sense of loss, no nostalgia. There’s a part of my mind that’s standing at a remove from the whole thing and just observing.

The last time I talked to my psychiatrist, she asked me if I felt guilty about anything, and I told her I wouldn’t know what to feel guilty about. I didn’t start the fire. I don’t think I was particularly reckless, selfish, or stupid when gathering things on short notice to take with us as we evacuated. I don’t even feel guilty about invading my mother’s house and staying here while we get our next steps together.

What I feel guilty about is not feeling sad. Not bemoaning the boxes of family photos in the garage that I never looked at. Not shedding a tear over the new dishes we’d had for about a week. Not even allowing myself to have much curiosity about what might have survived. What does it say about me that the only emotion I have so far is a sense of exhaustion at the enormity of rebuilding? Whatever it says about me, I don’t feel guilty about that either.

Between Fire and Ashes

Today is Tuesday, September 2nd. We were evacuated August 19th. My house burned down August 20th.

I have these dates written on a white board in my mother’s spare room, which is where I’m living now. I keep them, because there is an avalanche of information I’m expected to take in and process, and stuff like that gets pushed out.  People would wonder what’s wrong with me if I can’t remember the date of the most traumatic thing that’s happened to me in years.

I don’t have a template for this.

Everyone keeps telling me I’m doing fantastically. I’m cheerful, I’m working, I’m in meetings, I’m solidly fixed on the future. But I honestly don’t know what else I could be doing. I comfort myself by solving problems, and this is a Costco-sized pile of problems.

At the same time, I’m feeling fragile. Any second, anything can rub me the wrong way and I could cry, storm out of the room, bark at someone. I realize that’s a perfectly normal response to a tragedy of this magnitude, but I still find it scary.

There are two kinds of loss of control – losing control of a situation, and losing control of yourself. This fire means that I lost control of the situation. There is nothing I can do to get my house back sooner. There’s a lot of cleanup, a lot of bureaucracy, a lot of planning and figuring and dealing with people who either want something from us, or have something we want. I can do nothing to change any of it. I’m not scared of that kind of loss. I have been feeling almost light – like I have no weight, I’m a ghost who can’t physically touch anything. All I can do is provide information to people who want it, and that’s easy.

But if I lose control of myself, what happens then? It’s not enough that I wouldn’t be able to control myself, but I wouldn’t be able to participate in fixing things. I would end up shifting that burden onto other people who might not be able to deal with it either. I can’t do that. It’s just not in my nature. I can’t let people who depend on me down.

 

 

Putting the “Morph” Into “Dysmorphia”

I have never been able to look at myself in a mirror, then look at a crowd of people and point to one who looked like me.

For years, I would point to someone and ask whoever I was with “Is that what I look like?” It must have felt to them like I was fishing for compliments, because that’s usually what I got in return. What I really wanted to know was how I appear to other people, because I can’t tell.

What I did know was how much space I took up. I knew how far back the seat of the car should be. I knew looking at a chair whether or not it would be comfortable. Whether there would be enough room for me on a bench with other people sitting on it. Whether a particular pair of pants or shirt would fit me. Whether, if I parked my car in a certain place, I would be able to open my door wide enough to get out.

But things have changed.

I recently bought some new jeans, because the old ones were uncomfortably large. What arrived was a size smaller than I thought I had ordered, and I held them up and thought “I couldn’t fit one leg into these things.” And yet, not only do they fit, they fit loosely. I can park in smaller spaces and still get out of my car. I can sit in an armchair and cross my legs up on the seat and still fit.

You would think that would be a good thing, but what it means is that my dysmorphia is now complete. I have lost the one thing about my body I thought I knew – how much space I took up. When I look in the mirror, I don’t see that my body has changed, because although my face looks thinner, my proportions are still the same. When I look in the mirror, I have nothing else to compare myself too, so I can’t see that my body has actually gotten smaller.

It doesn’t help that I am still wearing a lot of the clothes I wore at my heaviest. My leggings, for example, wrinkle even at my widest points and no longer compress me at the waist, but they don’t fall off. I have a drawer full of t-shirts that have gone from painted-on to a bit loose, but they still fit. Almost 75 pounds down, I am still wearing the same underpants, although I am less prone to wedgies.

Part of me wants to believe that I will come to recognize this new body. Not just how much space it takes up, but its shape and texture. But when I do, will I love that body as well?

 

Weight Loss in the Time of Coronavirus

There’s a well-understood phenomenon that comes along with bariatric surgery called “dumping syndrome.” When a person who’s undergone bariatric surgery eats too many carbs, their body can respond with vomiting, diarrhea, extreme fatigue, rapid heartbeat, flushing, sweating, light-headedness, loss of concentration, and unconsciousness. It sounds dire, but it’s not life-threatening and usually just signals that you should knock it off, for crying out loud.

But then, along comes COVID-19, and all bets are off. Stress is at an all-time high as people are told to stay home, grocery store shelves are empty, infection rates and death tolls rise, and the truth about our poorly-managed healthcare system is revealed. Being unable to leave the house while simultaneously being bombarded with terrible news is a perfect recipe for stress eating, and stress eating is very often carb-rich. Snacks, baked goods, comfort foods – they’re mostly carbs, and therefore off limits for the bariatric patient. And yet, like everyone else, I’m only human and I only have so many outlets for relieving stress when I can’t leave the house.

Couple this with the fact that it’s spring. Here, it’s been raining for days, which means a lot of mold, to which I’m allergic. And when it dries out, everything is in bloom and spewing pollen into the air, to which I’m allergic. My nose is running like a marathoner and I’m sneezing constantly, and even though these aren’t symptoms of COVID-19, I’ve gotten death stares from people at the grocery store.

Which brings me to the point where I’m sitting on the toilet in some pretty acute distress, my forehead beaded with sweat, worried that the next time I sneeze I’m going to spew from both ends in a way that will involve a whole lot of cleaning up. And because it’s March 17, 2020, my mind does not go immediately to the tamale and beans I had for dinner last night. It goes to coronavirus. And the fact that my daughter, who was staying with us for the past few days and has only just gone home, has a compromised immune system.

It took me way too long to connect my symptoms to dumping syndrome, and once I made the connection, I immediately felt better. But it’s scary that this is what life looks like right now. Every time my nose itches or I feel a little warm (so, add climate change into this mix) or I have a tickle in my throat, I worry that I’m a plague victim, and a danger to the people I love most.

Like everyone else, I don’t know how long this is going to last, or what the world will look like once it’s over, but I do know that the only way to get through this thing will be to take great care of myself and the people around me. I hope you all can do the same, and that if you’re in a tight spot, there will be people there for you.

 

Physical Therapy

Our daughter moved into her own place, and my husband and I have been making her room over into a guest room. The bed wasn’t as cushy as I’d like, so I put one of those memory foam mattress toppers onto it. This thing was a Costco special – fully three inches thick and, for a queen-sized bed, weighing about 20 pounds. As I wrestled it from its packaging and turned and twisted to distribute it over the mattress, I pulled something in my back and ended up in bed lying on a bag of ice for a couple of days.

About 17 years ago, I had a similar incident. I was sitting on the couch, sneezed, felt my back pop, and was immediately in agony. Back then, I went to my regular doctor. He prodded my butt, announced that I hadn’t done any permanent damage, told me it was probably due to my weight, and gave me nasal spray for my allergies.

I couldn’t stand for long. I couldn’t sit down. I couldn’t lie down. In order to bend over, I had to keep my right leg straight and extend it behind me. The only time I wasn’t in agony was when I was walking slowly, but I had an office job and two small children and so couldn’t do that all day. So I gritted my teeth, ate ibuprofen like candy, and bore with the pain.

I went to another doctor, and she said the same thing – “You’re too fat.” No offers to give me anything to alleviate my pain, no recommendations for ice or heat or stretching or goat sacrifices. Just an opinion about a tangential fact.

The frustrating thing wasn’t that I went to at least one more doctor who also told me it was weight-related. By that time, I had become resigned to living a life in pain and being unable to get medical help. The frustrating thing was that, as an office worker, I had a limited amount of sick time, and, since I was new at this particular job, no vacation time. Taking half a day off to see a doctor who didn’t even try to help, and having to cough up a $20 copay for the privilege, was a classic example of adding insult to injury.

This time around, I went straight to a chiropractor*. We talked extensively about my medical history. He asked me to stand and looked at me from many angles. He had me lie on my back, front, each side. He poked, pressed, probed and asked “How is that?” Finally, he did some adjustments and some deep tissue work, and I walked out of there feeling much, much better.

The entire time I was there, I fully expected him to say something like “I can work on you, but I’m not sure how effective it’s going to be, considering your weight.” Or “We can try to fix your back, but your best bet would be to lose weight.” When I went into the exam room and looked at the table, I thought There’s no way I’m fitting on that table without my hips hanging off the sides. When he took me into another room with a table specifically for lower-back stretching, I had a flash of fear that I would be too heavy for the table to work.

None of that happened.

This guy was polite, professional, competent, helpful. When I sat or lay on the tables, they didn’t even squeak, let alone groan with strain. I walked out of there feeling like I had been thoroughly listened to by a person invested in my well-being, and it felt a little surreal. Is this how it is for thin people all the time? And if it is, do you understand what a gift it is?

So now I’m angry on behalf of past me, who endured two years of unspeakable pain because the medical establishment couldn’t be bothered to look past an appearance they found displeasing to do their jobs, and I’m angry on behalf of everyone who is still suffering because of the judgement of medical professionals.


*The first time this happened, it was a chiropractor who finally figured out what happened. I blew a disc in my spine, and in the two years I couldn’t get treatment, the vertebrae on either side of it had fused, very slowly killing the nerve between them. Which is less pleasant than it sounds.

You May Not Be Fat, But You’re Still Fucked Up

Ever since I started these posts, people have been flocking to me, wanting to talk about their own experiences of weight. Many of them have BMIs* in the “morbidly obese” category (a BMI greater than 40), but just as many of them are what I think of as a “media-normal” weight, that is to say close to the size and shape that people in the media tend to appear.**

When thinner people want to talk about fat, the conversation always starts out the same way: “I lost a lot of weight, and…” But drill down on what “a lot of weight” is, and it almost always turns out to be 30 pounds or less. Don’t get me wrong – it’s fucking HARD to lose weight, and 30 pounds is a considerable accomplishment. Anyone who’s lost 30 pounds has a great deal more sympathy for those still struggling than people who cry about wanting to lose “that last 5 pounds” but have never had a BMI above “normal.”

What’s sad to me is that even those 30 pounds are enough to make many people panic, and to have friends and family begin the cycle of well-meant advice and snotty, skinnier-than-thou remarks. To these folks, those 30 pounds are often admitted to like a dark secret (as though people who saw you in the past could see how your thighs touched or your upper arms wobbled or whatever your hallmark of fat was), and I suspect the reaction they’re looking for is “NO! YOU?” That would reassure them no one could see the moral stain of excess weight. As though knowing they weighed more in the past would make me think any different about them than I do in the present. As though 30 excess pounds is the equivalent of murdering kittens.

It breaks my heart to hear how those people who’ve had a few excess pounds and shed them often talk about the unpleasant things they did to lose the weight. “I gave up all starches.” “I exercised three hours a day.” “I ate nothing but celery for a week.” “I fasted for 20 hours a day.” None of them say “And the whole time, I felt like Superman!” But they did it because they felt they had to suffer and sacrifice, not just to lose weight, but to atone for having gained it in the first place. And the more extreme and unhealthy their dieting journey, the more skinny people laud them for having endured it to re-enter the Company of the Comely.

Weight fluctuates for such a huge variety of reasons, from a slower metabolism due to aging, to the body’s need to conserve resources when it thinks it’s in crisis. People should be kinder to themselves about their bodies’ own changes. Love yourself, not by ensuring that you look attractive to someone else, but my making sure that you feel healthy, strong, and at peace. And if you feel those things at 30 pounds more, you’re fine.


*I use BMI here only because it’s a commonly-used metric. Please remember that both the entire notion of “body mass index” that supposedly measures your lean/fat ratio and the labels attached to various numbers on that index are utterly arbitrary.

**I say “tend to appear,” because we all know that anyone who looks “normal” on television or in the movies is likely a miniature stick figure in real life. I’ve seen Jane Fonda in person. She’s 5′ 8″ and weighs 4 pounds.

Thanks For Your Concern

“I just want you to be healthy.”

“You look so uncomfortable.”

“You’d feel so much better.”

I’ve heard it, usually coupled with some kind of advice that I’ve heard a thousand billion times before. Advice like “get more exercise,” “eat more vegetables,” and “drink more water.” I’ve done those things, and was probably still doing them. And I’ve lost weight. And then gained it back. And then lost it again.

And people say those things as though I might not have thought these things myself – as though I hate myself with such intensity that I’m committing suicide by cheese (although if I were going to off myself, that would be my choice).

But they’re not saying it because they’re actually concerned. They’re saying it to signal disapproval without sounding actually mean. “I just want you to be healthy” is code for “I feel disgust watching you eat.” “You look so uncomfortable” is code for “I feel uncomfortable when I look at you.” “You’d feel so much better” is code for “I’d feel so much better.”

But none of these barbs disguised as concern or advice help, because that’s not how it works. If it were as easy as “eat less move more,” everyone in a wheelchair or hospital bed would be obese, and everyone who ate vegetables and exercised would be skinny. But I’ve been obese my entire adult life (with occasional flashes of thin), and I know as well as you do that it’s so much more complicated than that.

Environment is a factor. Hormones are a factor. Psychology is a factor. Genetics play a part. If your family is heavy, you’ll be heavy. My mother’s family is from Scotland, and that side of my family is typically short and sturdily built. We totally look like the kind of people who can throw telephone poles and carry a sheep under each arm. My father’s side of the family are Mexican, and are generally taller and thinner. I started out with a 50/50 shot. Guess which I got (cue sad trumpet).

Long before I even considered surgery, I ate a healthy diet and got plenty of exercise, and seethed whenever someone expressed “concern” about my size. So I just stopped listening. I cordially invited those people who felt the need to comment to shut the fuck up.

If you were really concerned about me, you would tell me you love my dress. You’d tell me you read that story I got published. You’d tell me you think I’m smart. If you really cared about me, you wouldn’t want me to feel like crap about myself by not-even-subtly telling me that you feel bad looking at me. That’s your problem, not mine.

 

 

Clothing a Lava Lamp

Two months after my surgery, I have lost 40 pounds, and I’ve started The Pile – all the clothes I can’t wear because they’re now too big.

At my heaviest, I had three kinds of clothes – those that were slightly too tight, but I could still fasten, breathe in, and move around in; those that were big and loose and baggy (and therefore comfortable); and the Goldilocks clothes that fit just right. By far, this was the smallest group, and now, it’s even smaller.

Clothing you buy off the rack was designed to fit one specific shape of person, and odds are excellent it’s not you. It doesn’t help that for women, clothes sizing has come unmoored from anything as objective as measurements. The dresses I fit into have all come from the same brand, and range in size from 16 to 22. Apart from that brand, I’ve got 14s that fit. Most women I know would give up vanity sizing just to be able to go into any store and know that every garment of a given size will have consistent measurements.

But even if you know that you’re, say 5′ 7″ and weigh about 200 pounds and know your measurements, you’re not going to be able to breeze into a store and find a garment that fits and flatters. Everyone carries their weight a little differently. What’s worse is that as the weight comes off, it’s not like it comes off evenly all around. My face got thinner immediately. My calves and thighs got thinner because I exercise by running. My belly? Not so much. I worry that I’m going to end up like some kind of bug – a gigantic body being held up by tiny stick limbs. What kind of clothes fit Gregor Samsa?

What’s even more frustrating is trying on all the clothes in my closet that used to wear before I gained weight. Many of them don’t fit, even though I weigh less than I did when I wore them, because I’ve changed shape. I had some clothes I really loved, and now I’m worried that I won’t ever be able to wear them, because by the time things fit around my hips, they’re too big in the waist, or by the time I can button a shirt over my boobs, it’s huge and boxy around the middle.

The biggest challenge, though, is the changing size/dysmorphia/specific taste trifecta. I know the look I’m going for, but I have no idea whether, when I hit my goal weight, it’ll look good. I guess I’ll have to do what I’ve always done: I just assume I’m the most amazing looking person in the room.