How Do I Explain That I’m Not Transitioning?

In good news, I don’t have cancer.

In less good news, surgery needs to be involved to maintain the status quo. I had a salpingo-oopherectomy this summer (and let me tell you hot flashes are ridiculous and I would like to trade them in on a puppy), and will be having a prophylactic double mastectomy with no reconstruction early next year.

So, my short-haired stompy-shoed flannel-wearing tie-owning easing-into-butch self is now worried, possibly unnecessarily, that well meaning acquaintances and coworkers are going to ask me about my transition, since I look masculine to start with and will then be all flat chested. Except I’m not transitioning.

The problem is that I’m having the surgery because I have bad genes and bad family history, which I am all emotional about. If I weren’t all emotional I would probably just say oh thank you for asking but I’m not transitioning but I’m so pleased you were comfortable enough to talk to me about it, but at the moment that seems likely to lead to ugly crying.

Is there a script for this? Can you help me figure one out? If I start practicing now maybe I’ll have it down by surgery time and I’ll be able to deliver it with a minimum of snot.

Thanks,

Not Transitioning

Dear Not Transitioning,

Oh my goodness. What a hard, hard thing. I am so sorry to hear about the bad family history with this, and about what I’m assuming are your losses. I am glad you do not have cancer, but what a way to avoid it. What a complicated and difficult thing — especially in full sight of everybody. It has many resonances with me in becoming disabled while coworkers were watching, and this kind of scrutiny (or fear of scrutiny) adds enormous stress to the original injury.

I’m not sure there’s a script for this, but I don’t think you’ll need one. Even the most progressive of people are still trained very hard not to walk up to a woman and begin chatting about how different her bustal area seems to be looking since last time you talked. Especially in settings where people don’t know you very well, if you are still wearing big loose shirts and stompy boots, people might not even notice — or not enough to say anything.

But I am not sure that’s what you need, anyway. You already know there is no pithy phrase that conveys: I am deeply, horribly emotional about this profound and unwanted change to my body, and I don’t want you to see how incredibly anguished I am, because it is not socially acceptable to burst into tears at work and also I don’t really know you that well.

There are pithy phrases that are perfectly polite that say: mind your own business and back the fuck off, however. And I suggest that you use one. I even think your idea of practicing ahead of time is a good one: when we are dealing with anguish, keeping it short and sweet (and well practiced) will keep our voices steady when we say the line we say, which I’m suggesting as a simple: “No! Non-elective surgery,” and then an abrupt change of the topic.It is four words and you can say them really really fast and move on or away.If people press (and some people are oblivious fucks), you can say: “Don’t want to discuss it,” and again change the subject.

I will also say this: pouring out your emotions and your energy about this into the ears of sympathetic people who love you (and possibly a therapist) will help you to not have as much pent-up emotion behind these four short words. I hope you have lots of support and listening ears, and some shoulders to cry on. I hope you have those. I wish you luck. And I sorta wish I could give you a hug. Or, in an office setting, an appropriately brusque and businesslike handshake while I talked about anything and everything except what was under your shirt.

This letter first appeared in bitterempire.com on October 29, 2015.

How Do I Deal With the Emotional Side of Disability?

Since at least junior high (around 16 years ago) I’ve suffered from what I now know is the wonderful anxiety/depression combo pack. And for twelve of those years, I’ve also enjoyed the feeling of multiple torn vertebral discs that won’t heal and associated arthritis. For the most part, fortunately, my mental and physical issues have stayed on their respective corners and played by themselves.Occasionally pain leads to some depression, but it’s easy to figure out and deal with. Until recently, at least.

A few weeks ago my pain jumped up a few notches on that fucking 0-10 scale doctors love to use, and I found myself limping quite badly on my walk home. It’s rarely been so dramatic, but fine, whatever, been there done that. Except this time a woman coming the other direction jaywalked twice to go as far around me as she could. Then a group of shouting, laughing, running tweens stopped in their tracks fifty feet ahead of me, went silent, and didn’t say a word or glance my way as they filed by slowly. Finally, another double jaywalker. All on one block.

I felt like a monster. An actual, straight-out-of-goddamn-Shelley monster. I’ve never felt so ashamed of myself or my body (even as an overweight teen), a shame that just seems to sink deeper into my bones every time I have to think about it. I was suicidal that night, couldn’t even bring myself to mention it to a psychiatrist for weeks because I guess it struck just the right chink in the armor.

I’ve thought about asking friends with physical disabilities about this, about how you react to and deal with that kind of encounter, that reaction of disgust, mistrust, fear, whatever it is. But I’m ashamed there, too. I limp sometimes. I use a cane sometimes. I’ll probably take anti-seizure meds, muscle relaxants, nerve pain meds, and piles of painkillers every day of my life. But I don’t consider myself disabled. I have mobility problems, but there’s a degree of separation there and I feel like a whiny asshole asking people dealing with issues so much worse than mine how I should deal with a limp and a glare.

I guess I need to though, because I’m at a loss and I’m worried about my next depressive episode. So when some asshole treats me like a monster to be avoided…what do I do with that? Smile and nod like a good Minnesotan? Give them the finger? Kidnap their women and abscond with them up the side of the Empire State Building?

I have no idea. And am I an asshole for asking a self-described cripple?

Thanks,

Walking Without Rhythm

Dear Walking Without Rhythm,

I am so, so, so sorry that you went through this nearly universal disability experience. It brought tears to my eyes: tears thinking of another human being going through this, and tears of recognition, remembering the times I’ve done through the same thing.

And I am so, so, so glad you wrote me about it.

I want to take this backward, if I might. Is it offensive that you, a person who does not see himself as disabled, would ask me how to handle this horrible situation? First of all, even if you were writing to ask me about how to handle a temporarily sprained ankle and the looks and judgment of others I would not be offended. But also: honey. You are one of us.

I see that you do not self-define as disabled. It sounds like this isn’t an issue of your feeling better than other disabled people, or of your being squicked by the idea of the label, but of your thinking your difficulties do not add up to your being impaired enough to deserve this definition. You feel whiny asking about social ostracization, agonizing pain, and suicidal thoughts. I’m just going to repeat this so you can see how ridiculous it is. You feel whiny. Asking about gut-wrenching social ostracization. Whiny. About agonizing pain. (Anyone who knows about vertebral discs knows that you are dealing with childbirth-scale pain, here.) About suicidal ideation. That is the worst kind of mental anguish, suicidal ideation. I know. I’ve had it. And you think you can’t be disabled because why? Because some other folks with disabilities have it worse? No. This is not how disability works. Much like bisexuality, I sort of feel like one of the defining characteristics of disability is the thought that you are not disabled enough to call yourself ‘disabled.’ Everyone I know who is disabled has had this feeling, except for one friend who has profound enough cerebral palsy that she communicates with a reflective device and communication system strapped to her power chair.She is literally the only disabled friend of mine who has told me she always feels ‘disabled enough’ to use the term.

Let me define disability for you in two ways:

  1. The definition from the U.S. Department of Justice’s ADA Guide: An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.” By that definition, you are disabled. Even just by that last phrase.
  2. The social model of disability: this model rejects the medical model of disability, which is a functional description of the body and brain as a machine to be fixed in order to conform with normative values dispensed by generally able-bodied doctors, for a more reality-based model: systemic barriers, negative or hostile attitudes and exclusion by society (whether deliberately or not), and a design of our surroundings for able-bodied, calm-minded people is what creates disability — not the degree of our impairment. By that definition, you are disabled, as well. (I would argue you also fit the medical model, but since I reject that model that is neither here nor there).

I’m sorry to be pushy on this front. But being disabled in a world created for able-bodied, mentally healthy people is a horribly isolating experience, and to deny yourself the fellowship of your fellow crips makes it even worse. Please stop doing that to yourself. Seriously. There is a whole world of disability activists, humorists, essayists, and plain old regular folks who support each other to get through times like this, which is part of what I’m going to suggest to you. Do not cut yourself off from your community. Visit butyoudontlooksick.com to read stories just like yours. Read up on crip theory. Especially when you are visibly impaired with a cane, allow yourself the Crip Nod. Feeling less alone in this is so so so SO important. Even allowing yourself to see yourself as part of the disability community, and reading and watching and observing from that mindset, is going to help you.

I, too, have a combination of mental health issues with mobility issues. And they dance together in horrible ways sometimes. Especially when people treat you like a monster.

I have had this experience you describe — fairly recently, actually. I found myself without a cane (speaking of not thinking you’re disabled enough to call yourself disabled: sometimes I don’t need any mobility equipment at all — until I do), limping along, late at night. And when security guards started hassling me, and drunks started laughing at me, I then started crying — which made things even better. I sat at a bus stop and everyone got up and moved to the other side of the stop.

I’ve had this experience when on my crutches in hardware stores (a mother once grabbed her curious child and RAN AWAY from me), in line at the grocery store, on public transportation, and even on a more quiet level at the beach and at work.

And it sucks, and it makes you feel absolutely horrible.

I don’t blame you for not telling your psychiatrist. It’s hard to talk to able-bodied people about this. (I assume this person is able-bodied since you didn’t tell me otherwise.)

It is this random ostracization that I find the most viscerally difficult about being a cripple (and a queer, incidentally). I’m sure I’ve also faced job discrimination, and I know I’ve faced condescension. But when people treat you as if you are not even human, it is like a physical blow that sinks deep deep deep into your marrow, your gut, your heart. And, as you described so beautifully and viscerally, for some reason we take this on as shame. Shame for our actions (which we can’t fucking help; limping is not FUN, people). Shame of our poor beaten-up bodies. Shame for ‘letting it get to us.’ Oh, all the goddamned shame.

I have been there. So many people like us have. You are not alone, no matter how much those fuckfaces made you feel like you were.

A practical suggestion, which I obviously did not follow a few weeks ago when I found myself in a similar situation: carrying a folding cane for times like this helps. (I’ve noticed many people can handle a limping person with a cane a lot better than a randomly limping person. Are they afraid we are drunk? Are they afraid that we are hurt and will ask them for help and this will somehow involve them in a scary situation? I don’t fucking know.)

As for what you do besides that (and as you probably know people will act this way even if you have a cane, sometimes): you do whatever you have to, to get through it. Sure. Give them the finger. Say something juvenile (I think I asked a mocking security guard why he didn’t have a penis that night. Sexist. Stupid.  Embarrassing. But it made me feel, briefly, like a person.). Glare back. Ignore them. Yell. Make a joke. Fucking moon them. I don’t care. You take care of yourself the best way you possibly can.

And then when you get away to a safe place, you tell people. If you have disabled friends, those are really the best. We are not going to think you have no right to describe your own experience, just because you don’t have a hang tag on your car. (Do you? It sounds like you could really use one, by the way.) You tell people, and that makes you feel less alone, and you cry, and you feel like shit about yourself even though the people who dehumanized you are the ones who should feel like shit about themselves, and then you tell more people, to combat the feeling of isolation.

Treating another human being like they are a monster is pretty much the worst thing someone can do to a person. It fucking hurts like hell whether or not you have pre-existing mental health issues or not. It is serious. It is horrible. And it is damaging. I guess that’s what I want to leave you with, above all else: you are not a whiner. You are experiencing abuse. This is serious shit. This is SERIOUS. SHIT. And you are worth treating it that way.

Solidarity, man. :secret cripple power fist: And I hope you don’t kill yourself. The world needs more of us than it needs of them.

The letter originally appeared in bitterempire.com on October 22, 2015.

Why Do People Jump When They Are Excited?

why do people jump wen thy are excited?

Thanks,

Luca, Age 5

Dear Luca,

Well, some people jump up and down when they are excited. Like most five-year-olds. People like me with neurological issues (when I unexpectedly see my friend Johanna, who has cerebral palsy,  a jolt of happiness runs through us and we both jerk and flail because we react to our blood pressure rising that way. I imagine it is rather entertaining to watch). Women who know they are being filmed during elaborate marriage proposals. Teenagers who get into the college of their dreams. People on game shows who have won a lot of money. Although maybe they just see a big, lit-up sign that says: “Jump up and down!” next to the “applause!” sign that the audience sees.

Some people do other things when they are excited. I, for instance, swear swears and punch people in the arm. Others smile very brightly, clap their hands, or just stand very still in astonished happiness. Some people even whisper when they are excited.

The answer, I think, has to do with the mind-body connection. You know how when you have done something you know will get you into trouble, you feel sick in your stomach? There is no reason for you to feel sick except your mind telling you to. That is the mind-body connection. Also, it goes in reverse: when you feel sick to your stomach because of a flu, it makes your brain miserable, as well.

And sometimes, when we feel a very powerful emotion like excitement, we need to show our feelings with a big, powerful movement. For many of us, that is jumping. It uses our biggest muscles (gluteus maximus, our butt muscles, and our quadraceps, in our thighs). It also makes us feel like we’re flying for a second. If you think about it, the feeling of excitement is a tiny bit like the feeling of flying, don’t you agree?

When you get older, you might notice that you are jumping up and down less. I’m not sure whether this is because adults feel emotions like excitement less intensely, or if it’s because we are socialized to be very dignified.

Not that any of us have any idea what ‘dignified’ really is. For instance, for some ridiculous reason I think swearing and hitting is more grownup than jumping up and down, even though some of the first lessons I learned in preschool were to not hit or say bad words.

I showed this to my own 11-year-old, because he knows a lot more about science than I do, hoping he might come up with a better answer for me.

He narrowed his eyes. “Why aren’t you jumping up and down right now?” He asked. “Jumping up and down is fun.”

And then I understood pogoing, and wished it didn’t give me shin splints.

So I guess my short answer is: being excited about something is fun!Jumping up and down makes it even more fun. I really think that’s probably all there is to it. Also growing up makes you kind of boring, unless you have brain damage like me and my friend Johanna do.

This letter originally ran in bitterempire.com on October 15, 2015.

How Can I Subtly Undermine A Fanatically Religious Upbringing?

My brother has two children – a 7-year-old boy and 6-year-old girl. His wife is CATHOLIC – in all caps. Their wedding included something like five priests (I can’t remember exactly, I just remember it was well above the required quantity). Their son is named after two popes. She once stated that she believes that athletes who pray more will win over those who pray less. She recently sent an email with pictures of her kids at a “birthday party” for “the Blessed Virgin Mother,” complete with a cake.

I grew up under the oppressive weight of Catholicism, and I am still dealing with the psychological baggage that comes with growing up gay and Catholic in rural Nebraska. This is one reason I don’t have a very strong relationship with my family. It’s not acrimonious — just distant, polite, and lukewarm. I see my brother and his family about once a year or so; his wife is pleasant to my husband and me, treats us both as pretty much family. I think the kids would probably recognize me in a police lineup.

I’m not against religion per se, but I think it’s a great disservice to indoctrinate children in superstitious belief systems when they are incapable of thinking for themselves. My attitude is that they would be better off learning about religion and then choosing for themselves which deity, if any, is worth worshiping.

What I need to know is: given how little influence I have, and have a right to (which I recognize is literally none at all), what can I do to subtly undermine their fanatically religious upbringing? Even if I’m only able to plant a seed now, some kernel of skepticism and rational thought that takes 20 years to bloom?

Sincerely,

Uncle Atheist

Dear Uncle Atheist:

Okay, you say you aren’t against religion per se. But why the hell wouldn’t you be?

Sure– the face of your sister-in-law’s religion is looney, but sort of sweet.After all, she’s not chaining herself and her children to the doors of abortion clinics. She’s not sending them door-to-door to leaflet against trans kids in sports. It’s birthday cake for a magical virgin and priest chorus lines and treating you, a gay man, and your husband, “as pretty much family.”

Awwww.

Except you aren’t ‘pretty much’ family. You are plain old ‘family.’

And you know exactly what Catholicism preaches regarding family like us.And you’ve been deeply, deeply damaged by it. Raising little queer children to believe there is something fundamentally, sinfully wrong with them is a terrible thing to do. And raising little straight children to believe that there is something deeply, fundamentally wrong with their own family members is another form of child abuse: teaching hatred, even if it’s cloaked in ‘hate the sin, love the sinner,’ which I’m guessing is how your sister-in-law thinks of it.

The head of this church, despite his warm and fuzzy exterior and his belief that persecuting gays should be put on the back burner for now, had this to say in a private letter to nuns about same-sex marriage when it was being debated in his own Argentina, when he was then-Cardinal Bergoglio — according to The New Yorker:

Let’s not be naïve, we’re not talking about a simple political battle; it is a destructive pretension against the plan of God. We are not talking about a mere bill, but rather a machination of the Father of Lies that seeks to confuse and deceive the children of God.

According to the National Catholic Reporter, Pope Francis has also referred to adoption by gay parents as a form of “discrimination against children.”

You have a damn right to be horrified that your niece and nephew are being indoctrinated into this church that hates you — that calls your marriage a ‘machination of the Father of Lies.’

Don’t get me wrong: I think there are many Catholics who are pro-gay/queer. There is a way to still have cultural and spiritual connections to a damaged church while fighting to end the hate that the church teaches. During the debate over the proposed anti same-sex marriage amendment in Minnesota, very brave people put signs up on their front lawns saying: “Another Catholic Voting No.” There is the “Catholics for Equality” organization. There are many others.

But you do not mention your sister-in-law being a member of any of these groups. That means she probably isn’t preaching hate to her kids, but she probably isn’t trying to counteract that message, either.

So I want to ask you this: what if your niece or your nephew is queer?

You’re right that you have no right to undermine your sister-in-law’s parenting. But you can sure as hell undermine Catholicism.

You can show by example that they have this awesome gay atheist uncle, and you can be utterly open about who you are and what all that means. You can answer all of their questions whether their parents like it or not.

And despite what you think about little children — this part is very very important — children can think for themselves. Children do think for themselves. They might not believe they are allowed to speak up about what they are thinking. But children — like everyone else — have their own thoughts. You don’t have to instill a kernel of skepticism. They already were born with it. They will figure stuff out.

Especially if they have you as an example.

You can tell them that you don’t go to church anymore because of what they teach about gay people, like you and your husband — and that all queer, trans, and gay kids are awesome. Just like you were. You can tell them you don’t go to church anymore because you don’t believe other things you grew up believing, too. You can tell them you don’t go to church anymore because sleeping in or having a big gay atheist brunch is more fun for you.

But you can’t do any of that if you continue to be lukewarm and distant. You need to establish a rapport with them.

And as far as that goes, I am not sure if I am asking too much of you.

You are keeping your distance out of self-protection. You have moved on and out and away and you should be free.

But it sounds like those kids might be pulling you back.

Can you stand smaller gestures, just toward the kids? Like: do you send them small gifts on their birthdays? Do you talk to them at holidays?

If you talk to them a few times at holidays, or send them little gifts, can you Skype or Facetime with them? Just say hello. Let them show you their dinosaur toys (oh god I hope they have dinosaur toys). Their pets. Let them tell their maddening pointless stories they REFUSE to enunciate in any clear fashion.

You can basically ignore the adults around you if that’s what you need to protect yourself. You can focus on the kids. And, as they are real with you, you can be real with them.

They already have brains. They already have a kernel of the skeptic. They need to know that they have you to talk to when they are older and they want to say: “I think I might be bi,” or “I don’t know if I believe in heaven.”

If you can do that (that is a big if — I don’t know exactly how painful home is for you), I don’t think you will regret it.

This letter originally ran in bitterempire.com on October 8, 2015.