disability

Is trying a new thing when you’re struggling with PTSD a crime?

/ Gentle Butch / Leave a comment

Dear Gentle Butch,

After being unable to work anywhere except for our farm for many years because of debilitating PTSD, my health is improving.

I am going back to school and have been accepted to do a full-time summer internship. People who are close to me say my health is good enough to at least give this a try, but I am terrified of letting people down and not being able to complete the internship.

Even though I am much better than before, I still have a lot of symptoms from my PTSD. What should I tell myself when I feel ashamed to try doing this? I feel guilty as though I were planning a horrible crime instead of an educational opportunity.

— Afraid of letting people down

 

Oh, my darling, my sister,

I mean, I’ve been there. I’m there. Hello hi.

I am so, so so incredibly proud of you for having gotten to this point. You went back to SCHOOL. You acted as if there was something else to life beyond survival: some future, some hope.

YOU ARE AMAZING. You have already won one battle.

But when your self esteem and zest for life and just plain humanness has been ground down to a nub by trauma, it sometimes does seem like a crime to live your life instead of merely survive it, doesn’t it?

I mean, who do you think you are? A human being trying to make it in this world? A soul worthy of a chance? A smart, capable person with a future ahead of her?

THE VERY IDEA.

I mean, that’s trauma talking, right? PTSD wants us to stay in that panicked cycle of fight-flight-freeze. PTSD tells us: no no no you don’t understand; you are still in terrible danger. Keep looking over your shoulder. Keep to yourself. Keep your sights low. Keep running.

Who the hell stops to work an internship when she is fleeing for her life?

The thing about PTSD and trauma reactions in general is this: our damage thinks its protecting us. It DID protect us, at one point. I try to think of my PTSD as a very anxious big sister who protected me from danger when we were children, but who has still inexplicably remained nine years old, unable to realize that time has passed and she doesn’t have to endlessly protect me.

Please tell that anxious big/baby sister that this internship does not result in thousands of people (or even one person) dying if you wind up having to bow out, cut back, or adjust. Please thank her so much for protecting you when you needed it but explain that you are qualified for it since you were accepted for it, and she can stop worrying.

I think there is a very good chance that, if you can be self compassionate and trust yourself, that you WILL complete it, and learn from it, and feel damn good about yourself when it’s over.

You are feeling better. People who know you agree that this is a good thing to try.

And this is an internship, not life or death. 

Your emotions do not fit the facts. you need to use that wonderful DBT skill Opposite Action. (Why yes I am taking notes during my partial hospitalization.)

You do it. You fucking take a deep breath and then do it. Fuck the fear of letting people down. Don’t let YOURSELF down by running away before you give yourself a chance.

NOW. This next part is really, really important:

“Do it” does not mean take a deep breath and fling yourself, with no preparation, into the deep end.

Remember that you can pace yourself. You can ask for accommodations for your disability. (In case folks don’t click through, I’ll excerpt here):

Accommodations for individuals with PTSD can take many forms, depending on the needs of the individual. Accommodation ideas from the Job Accommodations Network include:

1. For those with concentration issues, reduce distractions with white noise or environmental sound devices, noise cancelling headsets, modifications in lighting, allow for a flexible work environment or schedule.

2. For those with memory issues, provide written as well as verbal instructions, checklists, wall calendars, electronic organizers or apps, additional training time or refreshers.

3. For those with organization issues, provide daily, weekly and monthly tasks lists, assign a mentor or coach, use of electronic organizers or apps.

4. For those with time management issues, daily To Do lists and check items completed, electronic assists previously noted, regular meetings with supervisors or mentors to determine if goals are being met.

5. For those with stress or emotional issues, emphasize stress management techniques, allow a support animal, use of a mentor to alert the employee if behavior is becoming unprofessional, EAP assistance and or allow a flexible work environment.

5. For those with coworker interaction issues, encourage the employee to walk away from frustrating situations and confrontations, allow part time work from home, allow for greater privacy while at work, and provide disability awareness training to supervisors and coworkers.

I’m mentioning these specific accommodations because I think a lot of us, especially if we’re feeling better, imagine work as it was before we had to quit/go on leave. We think we have to function just as we did before with no supports in place, no fallbacks. Just . . . barefaced to the world.

But we don’t. We don’t legally have to do that, but probably most importantly we don’t ethically and emotionally and practically have to do that.

You, just as you are, have a lot to offer the world and school and that internship. You have seen things. You have been through some shit.

You have life experience and empathy and understanding that many people don’t have, and that’s going to help you in any career worth having.

You are going to be able to do this. You might need to practice some self compassion and some self advocacy and need some flexibility — from yourself and from others — but you can do this.

And if thinking that leaving early, cutting back on the hours, or deciding it’s not for you counts to you as a ‘failure’ or ‘letting people down’ enough to stop you from even trying, I hope you will reframe your thinking.

Is realizing that full time work is not for you ‘letting people down,’ or is it getting to know yourself and your needs and abilities better? Is asking for and receiving accommodations for your disability ‘letting people down’ or ensuring that your best possible self comes to work with you, and being an excellent example to others with disabilities or who need to understand disabled people?*

I believe in you. More importantly, people who know you and what you are capable of believe in you.

You are allowed to move from surviving your life into living it. 

 

*that’s a CBT skill called ‘reframing,’ gentlebeings, for those taking notes along with me.

Writer asks why on earth someone who is such a mess herself thinks that she can give advice

/ Gentle Butch / 3 Comments

(Spoiler alert: the writer is me.)

Dear Gentle Butch,

It is I, Gentle Butch, come back from an unintentional hiatus.

The thing is that I started having multiple flashbacks a day and dissociating constantly. I couldn’t function at work, and I couldn’t concentrate on anything. I couldn’t write. Like, at ALL.

So, I quit writing this column and I took leave from my day job (which is also writing) and went on short-term disability and now I’m in a partial hospitalization program* for those fighting PTSD.

I am in an incredible place: I earn enough that I can survive on 60% of my pay combined with my partner’s pay (I have literally never been in this position), I have an understanding employer, a kind and supportive partner, short-term disability insurance, and the Americans with Disabilities Act — which has led to laws protecting my job when I have to go on hiatus for stuff like this.

I am so, so goddamned grateful.

However, I am also struggling, and my writing (and, often, my ability to sustain a straightforward conversation, find my way out of a grocery store, and shower more than about every other week) has abruptly ended.

But lately, I’ve found myself on Quora, answering questions, because I was being too mean to people on Facebook and deleted the app.

“Why am I wasting my time when I could be engaging with Mindfulness or working on watching my exposure videos?” I thought to myself, and then I sat up straight.

I was building up my writing muscles for this column!

I have been telling myself to be professional about it and not just start writing the instant I felt a spark of life stir, but you know what? Professionalism is a tool of the kyriarchy. I’m writing when I can and not writing when I can’t.

So I might be back. I might wander off again, lost in flashbacks and panic attacks. You get to live in suspense!

You’re welcome,
A Train Wreck

Dear Train Wreck,

I’m glad you wrote. I think it’s super weird that I’m answering your letter, but I’m trying to do this ‘being gentle with yourself’ thing so I’m not going to be too bitchy about it.

* Partial hospitalization, specifically a program that uses Prolonged Exposure and Narrative Therapy, is THE SHIT. I have never gotten so much done on fixing my cranium in such a short amount of time, ever. Check out Rogers Behavioral Health if you or someone you know might benefit from some seriously intensive self work.

She misses romance and sex. Is her disability getting in the way?

/ haddayr / Leave a comment

Hello, lovely,

I hope you are well! It sure is tricky to bundle all your backstory into a few brief sentences, isn’t it? Here we go. I’m single, and not unhappy, but I miss romantic touch and sex. I’d adore having my own (or heck, multiple!) lover/s. Even a full-on Relationship, if I found the right man.

I’m disabled, with a chronic (and invisible) illness that leaves me mostly housebound and affects my mobility, stamina, etc. Going out and meeting people — which I enjoy, and make friends doing — is very difficult for me.

Dating apps have been eh. While I appreciated the ego-stroking provided by people finding me attractive on superficial criteria (especially since I’m 40 and have more fat than society deems acceptable), most of the matches have been with men I’m not actually that interested in.

This might be due to the challenges of writing a bio. I either omit even a single hint of my disability (and then am forced to have That Conversation over, and over, and over) or I mention it and watch helplessly as my bio becomes a long-form apology for… well, me. I vacillate between deciding I ought to settle for anyone who is interested in me, and defiantly declaring I will never settle for anyone who doesn’t deserve my attention. Because I am splendid, damn it!

Being in a fifteen-year-long relationship with someone who didn’t know he was asexual is Not Helping, unsurprisingly. I’ve been single since that relationship ended and oh, I miss being desired. There’s a twirly knot of fear that I won’t ever have that feeling again. I don’t know what I need from you, lovely. Perhaps a mantra I can salve over my bruised sense of self and march (with a cane) back into the dance. (Yes, I nearly said “fray”.) (Sigh.)

With warm regards,

The Valid Invalid (she/her)

Dear TVI,

As I searched creative commons, seeking an image for this post (send them some money if you have it!), I came across the strangest thing.

Most of my searches result in page after page of people. After all, we are people. We like to take photos of people.

The search for ‘disability?’

An entire page of objects. Symbols. Parking spaces. (So many parking spaces! Yes, we get better parking, ableds — try to keep body and soul together in the face of this grave injustice). Equipment. Signs.

Finally, I got down to some people. One of the first: a man in a transport wheelchair, his head in his hands.

SO many people think of disability as a concept, as a designation, as a living misery — that they can’t see the disabled people. For whatever reason, ‘disabled and dating’ turned out a bunch of ‘inspirational’ amputees competing in olympic sports. I dunno. I guess we can be people if we are superhuman. “Romance and disability,” “kissing and wheelchair,” etc. came up either blank or just really, really off-topic.

This is how the world sees us: nonsexual, alien, Not To Be Spoken of Or Seen. Invisible.

So of course we sometimes see ourselves that way. Internalized disablism is a real thing, and it sucks.

Throw in an asexual partner for 15 years whom you didn’t know was asexual (“oh, I miss being desired. There’s a twirly knot of fear that I won’t ever have that feeling again” just get me in the gut), and . . . Christ.

If one doesn’t kill your sexuality, the other one will.

So the fact that you’ve been putting yourself out there despite enormous societal and personal pressures is itself an enormous victory.

Celebrate that, sister. Seriously. You are, indeed, splendid!

I can answer your question straightforwardly: no, you do not have to settle. You are not ‘damaged goods,’ disabled or no, and you need to kick to the curb any other ideas about that. I already know a few sexAY things about you: you’re an excellent, wry, and evocative writer; you are pretty (sorry, folks, only I get to see the thumbnail); you are over 40 and therefore probably darn good in bed.

And I have practical advice for dating apps.

But first . . . you say you have a chronic condition and going out is very difficult for you, and then you mention a cane.

Just a cane.

Is there a reason you didn’t mention any other mobility equipment?

Because a chair or a scooter or even crutches or a walker with a seat on it could be a game-changer.

A lot of us with pain or fatigue issues (you said disabled with a chronic invisible condition, so I’m going to assume it’s pain, fatigue, or some other exhausting issue) could really use some goddamned physical support. If you really enjoy going out and meeting people, and a chair or scooter could help, please figure out how to get one. I’m serious. I know it makes us look more crippy, but who cares when you’re having a great time?

Being out in a wheelchair or with my crutches in social situations is a gift. Truly. It’s an Asshole Eliminator.

One look at someone and their expression when they see you can save you countless hours of texting. And people who have that vague ‘invisible but only a symbol’ vision of disability will see a real, live, obviously disabled person who is splendid and worth getting to know.

Seriously. If money is an issue and you don’t have good insurance, stalk craigslist or FB Marketplace for used scooters. Rent them at tourist places and museums. DO NOT BE AFRAID.

Did you know that cripples give each other a little nod when we see each other in public? A solidarity nod. I fucking LOVE that nod. LOVE IT. We are in this together, we are saying. Read up on disability history. There have been a lot of badass and mad sexy cripples fighting for our rights, and seeing yourself a part of that proud history takes some of the sting of public disability away. It instills disability pride, which banishes disability shame.

Now — if all of that is just crap (and even if it isn’t), here is some very practical advice when using dating apps (which you really have to do; statistics show this is where most people are meeting sex and romance partners.)

Although my aim is not men, I discovered that putting my disability front and center attracted a lot of beautiful, bright, and interesting women on apps. (Especially okcupid for whatever reason.) And it weeded out those who are dipshits about disability. (For the record, I am also over 40 and fat.)

You don’t have to mention it in your bio at all, except perhaps in the ‘things I could never live without’ section: “My super sweet cane that takes me everywhere I go,” perhaps.

Make sure your photo, after the first closeup of your face, features your cane in some way. Pose with it. Lean your chin on it pensively. Strut with it.

This is how you unapologetically bring up the subject of disability; show them. Here you are, a perfect dandy, with your cane. Here you are, leaning on it with a smoky expression. Here you are, disabled and a stone cold fox.

Then, you talk about everything else in your bio (except for that one reference to a cane, perhaps, in a very positive light). People who look at your first photo or two will see that you use a cane. They don’t need any details up front. Truly they don’t. Any more than they need to know about your childhood, happy or miserable or both, your secret fears and desires, your entire health history. They just need to see that yes, you are disabled.

Then you only go out with guys you think you’d like. That’s it. Do not settle. No no no no no.

Look at the image I finally found for this letter. This lady is fat and disabled. And she is in the arms of a man and they are watching the sun set over the water at Prince Edward Island and it is ROMANTIC AF and I’ll bet afterward they schtüpped like bunnies.

You can have that, too. You can you can you can.

So now we can’t even say hi to a service dog?

/ haddayr / 57 Comments

Dear Gentle Butch,

I know we aren’t supposed to touch service dogs, but we can look at them, right? What if the dog approaches us first?

I was walking toward a woman with a service dog on the sidewalk, and her dog was so incredibly cute! It was a beautiful shiny black Lab bursting with Lab cuteness, with floppy soft ears and a big doggie smile.

I love dogs. I didn’t say anything at all, but as we got closer I did look at the dog, smile, and give it a little wave. He wagged his tail.

As I passed, the dog’s tail got faster, it raised its head, and sniffed at my knuckles. I paused and turned my hand around for him, and he gave it a little kiss as he went by.

I would never have touched a service dog that hadn’t sniffed me, and I didn’t even really touch him as it was!

The woman yanked the dog closer to her and snarled at me: “Interfering with a service dog is against the law!” And kept wheeling down the street away from me.

I didn’t even make her and the dog slow down on their way.

I know I shouldn’t touch them, and I didn’t! But I feel really bad. She was just so angry! I don’t think I did anything wrong, and I don’t see why she had to be so mean about it. 

What do you think?

— I Love Dogs

 

Dear ILD,

Listen. I get it. I really do. I am also a dog lover, and human beings evolved next to dogs. Our species are inextricably linked, and when you’re a dog person it’s nearly impossible to reject a doggie overture.

Studies show that dogs in the workplace lower stress levels, and they make obnoxious teens and stoic butches alike coo and make baby talk and kissy noises. Their fur begs to be pet and their noses beg to be kissed. And dogs — especially Labs — love attention from people.

That’s where things get sticky with service animals.

My service dog loves people — especially children. And other dogs. If I allowed it, he would spend his days as a social butterfly distributing kisses and soliciting treats rather than supporting me.

And that’s the thing: service dogs have a job to do. And when they are distracted or when they are hoping for and expecting attention from others, that’s when things can get dangerous for their disabled handlers.

You say that the dog initiated with you, and that you didn’t slow them down or touch him.

But you actually initiated with the dog. Making eye contact and waving is very appealing to friendly dogs.

And if you were close enough for the dog to sniff the back of your hand? You were too close.

Service dogs need space to work. Walking close enough to one for him to sniff you, even if you hadn’t gotten his attention first, is very distracting.

Think about it: if every person (or even every tenth person) who walked past that woman and her dog waved and interacted with her dog, the dog would stop paying attention to his handler and start looking around and maybe even lunging toward people for attention, play, etc.

My dog once lunged when I was in my wheelchair, and I ended up in a heap on the sidewalk.

It’s dangerous for the dog, too — a man once made kissy noises at my dog, he looked at that damn kissy man instead of where he was going, and I rolled over his toes.

So: next time you see someone with a service dog, even if you’re on a crowded sidewalk or in a narrow hallway, avoid eye contact with the dog and give them a wide berth by either walking out toward the curb or even stepping aside for them to pass.

I think many people make the mistaken assumption that service dogs are so perfectly trained that they are basically robots; if the dog shouldn’t sniff, he shouldn’t sniff no matter what.

But dogs are dogs, and no training is perfect, and when people walk by offering attention over and over, it erodes the training the dog has gone through.

I know it hurts. Like, I mean, if you love dogs it can sometimes actually feel like a physical pain to refrain from at least even saying hi.

But don’t do it. Just don’t. It is dangerous for the handler and for the dog.

Now: you are wondering why the handler was so angry.

I confess, although my name is Gentle, that reading this letter angered me, too — even as I understood how easy it is to make a mistake like you did.

See, disabled people, like any marginalized group, deal with microaggressions every day — be it people TALKING VERY SLOWLY IN THEIR SPECIAL VOICE, grabbing our wheelchairs, asking why we ‘need those sticks,’ or stealing the parking spaces set aside for us so that we have enough room to enter and exit with our equipment.

So I am nearly certain that you were not the first person who interfered with her dog that week, and probably not even the first to interfere that day — and after a certain point, all of us just snap.

The type of behavior you describe is really, really distracting to the dog and it’s incredibly enraging to a handler, no matter how well-meaning you were. That’s why the handler got so angry. It’s as simple as that.

I know it stings to have a stranger rage at you in public, and I also know that not a lot of people get good information on how to deal with service dogs in public except for ‘don’t touch.’

But now you know for next time, and hopefully by writing in, other people now know, too.

How do I handle my best friend’s anger?

/ haddayr / 4 Comments

Dear Gentle Butch,

I’m physically disabled and neuro divergent with a best friend who is also neuro divergent and my aide. We’ve been best friends for seven or eight years, we have a dog together, we love doing things together, we’re roommates, and she has recently become my PCA*. A couple months ago, we hit a pretty big problem. I ended up having my first (visible to her) meltdown and said plenty of things I shouldn’t have, and I triggered something. I’ve long since apologized and have tried to take steps to clear up the situation. To this day I’m not entirely certain what it was that I triggered and while I can’t apologize specifically I definitely have generally.  There’s plenty of times where we’ve been doing great. The incident happened midway through September, and we’ve managed to do the holidays together and have fun and support each other….mostly…ish…

I am well aware my friend is dealing with depression issues (that have stemmed from the incident in September). I’ve tried to be supportive, to keep taking her out, to ask her opinion on things, and give her space when needed. I’ve also broached the idea of medication and therapy which due to health insurance issues is not an achievable goal at the moment. What’s happening a fair amount is that she seems quick to anger and then stews in her anger. It has been happening a lot. And while she says it is not my fault, I feel hugely caught up within her anger.

I don’t expect her to be a happy go lucky person all the time, and I know she is entitled to her anger, but often it feels that I have been on the receiving end of her anger whenever she has it. I’ve tried being comforting and trying to empathize and she repeats the words under her breath and it sounds very sarcastic. Sometimes it feels like she’s just throwing the words right back to me. She says she doesn’t know she’s doing this when I bring it up. I often try to take what I think is the safer route of being quieter especially as it feels like her anger seeps out until everyone knows and can clearly tell she is upset (I’ve had to keep multiple people from mentioning it  especially during her work hours because mentioning her being upset just makes it more stifling). When I’m quiet tho she gets upset again because I’m not being helpful or saying anything. I’ve asked her multiple times what she would like me to do but sometimes she says she doesn’t know what she wants me to say and sometimes she says she doesn’t want to tell me what to say. 

I’m just so confused and I keep getting hurt in her anger crossfire and I don’t know what to do. I love my friend so much and she’s also really good at her job, I just don’t want to have to keep walking on eggshells and being hurt when I try to help. I also struggle with trying to talk to someone about this as she also sees any sort of talk about her to other people as “talking behind her back”. But I don’t know what else to do. 

Sincerely,
Confused and Struggling 

*editor’s note: Personal Care Attendant.

Dear C&S,

What a rough situation for both of you. Anger is an emotion that so many of us learn is something to be shoved down, unacknowledged, glossed over, or vented and then never spoken of again. And the way your friend is expressing it sounds really agonizing: for you, and for her.

I wish you’d given me more detail about the things you said during the meltdown, and what you mean by saying you ‘shouldn’t have’ said them, but I’ll do my best, here.

You say that you have apologized a bunch of times, but this really stood out for me: “While I can’t apologize specifically I definitely have generally.” 

Why can’t you apologize specifically?

You don’t know what is going on her head (more on that later), but you certainly know what you said, right? (Maybe you don’t know what you said; I know that many neurodivergent people who have meltdowns have trouble recalling the specifics of the event.) If you can remember what you said, you don’t need to apologize in a general fashion. General apologies such as “I shouldn’t have said that” or “I’m sorry for my meltdown,” while sincere, don’t actually help to soothe sore feelings. Specific apologies such as “I’m sorry I said you were weak; I was lashing out and I know that particular word is really upsetting for you — it wasn’t okay or true but in that moment all I wanted was to make you go away” make more sense to people. You’ve acknowledged you hurt them, specifically, and how — and you’ve taken responsibility for your behavior.

If some of what you said was true, apologizing for the way you said them and acknowledging the specific hurt it caused goes a lot further than “I’m sorry you got hurt” or even “I’m sorry I hurt you.”

I think that’s really all you can do: sit her down, be incredibly specific, and offer sincere apologies. Cop to what you were doing. Tell her about steps you’re taking to prevent this behavior again (therapy, preventing sensory overload, etc.).

Although we all need to talk through issues we’re having with our friends, and I don’t actually agree that hashing this out with another friend is talking behind her back, she is the only person who really needs to hear what you are saying, and she is the only person who can tell you exactly what is going on, here.

As for her behavior: oh, boy. This poor person. No one has taught her to deal with anger in a healthy way, and she hasn’t learned it on her own. If I were to hazard a guess, she is still smarting from what you said back in September, thinks she’s over it, and then finds it bubbling up when she least expects it.

Whatever you said and however you hurt her, however, it’s not okay to mimic people and then say you aren’t aware you’re doing it. I’m guessing she’s doing it to hurt you the way you hurt her, but that is just . . . I mean, you know it’s grade school behavior, mimicking. Which tells me whatever happened did trigger some old stuff for her, and pushed her into that place.

If I am not careful, I can be like your roommate. And while I don’t know what is going on her her head, I can tell you what’s going on in MY head when I pull crap like this: I think I’m over something, I’m getting along with whomever hurt me, and then she does something else to hurt or anger me and suddenly everything else that is unresolved comes roaring back into my brain again.

I feel like a petty child for becoming so upset about a small thing, even though it’s actually the entirety of what has happened, and so I withdraw, and sometimes get snide and sarcastic, like she does with you.

That doesn’t make it okay. Even if she has a right to be angry with you, she doesn’t have a right to resort to tactics like this and especially cannot try to pretend she doesn’t know she’s doing it to get out of it.

Even if you don’t want to accuse her of lying about it, you can say firmly: “Well, you are doing it, and it’s not a way to talk to a friend, and you need to stop.” You are allowed to require respectful communication, even if you feel guilty for what you have said to her in the past.

I think wanting to help her and suggesting therapy and meds could be very provoking for her, as well-meaning as you are, since whatever you said was the precipitating event. Although I am certain you are suggesting these things because you’re worried about your depressed friend, it could conceivably come across as blame-shifting.

One thing that really stuck out to me in your letter was this: “Sometimes she says she doesn’t know what she wants me to say and sometimes she says she doesn’t want to tell me what to say.”

This sounds to me like someone who wants you to genuinely apologize and understand the harm you caused, on your own — and somehow she believes that telling you how it hurt would take away from the apology, somehow.

Shushing other people over her moods and walking on eggshells hurts both of you, really.

I think what you need to do is spend some time thinking specifically over what you said and, knowing her like you do, how it might have affected her in very specific ways. After you’ve figured out the extent of the harm you believe you caused, I think you should sit her down during a time you two have alone and tell her you need to apologize for something, and then do it: fully, specifically, completely, and taking all responsibility. And then tell her that you are sure you have missed something and to ask her please to give you the chance to apologize for other things you overlooked.

It will be very hard for her to be vulnerable with you, but if you have laid it all on the table and genuinely taken responsibility for what you know, and if you are asking her with an open heart yourself (which is also going to be hard after all of these months of alienation), you have at least given her the room to try.

Your sincere and specific apology might help, but I also think that if you have any insurance or money of your own, a counseling session or three with you two as best friends would be a great way to give the two of you a safe space to discuss this.

Counseling isn’t just for couples and families, although in a way you two are family to each other.

While a trained and compassionate facilitator is a help in dealing with seemingly intractable communication breakdowns (which is what this seems to be), another great help is the session format itself: if dealing with hurt emotions and having to feel vulnerable is overwhelming for either of you (and I think it is overwhelming for her, which is why she’s pulling away so hard), you will both know that it only has to happen an hour at a time. Sessions have a specific beginning, middle, and end, and a compassionate third party helping to guide you in the conversation may be helpful.

Last: have you told her all of the things you love about her lately? After the apology (this MUST come after the apology so that she can genuinely hear it and so that she doesn’t think it’s just you buttering her up), telling her how much you care for her and why can really help hurt feelings and strengthen your relationship.

I’m pulling for both of you. This is all just so incredibly difficult to navigate, especially when something from someone’s past has been triggered. And it sounds like she cares about you as much as you care about her — otherwise, you wouldn’t have had the power to hurt her so much in the first place.

How can this exhausted and burned out mom stop feeling bad about feeling bad?

/ haddayr / 2 Comments

Dear Gentle Butch,

My husband and I had our second child a little over a year ago, and we’ve been having a really rough time.

Our daughter had a fairly run-of-the mill infancy and is now a bright, verbal, inquisitive, high-energy four-year-old.

Our son doesn’t have any serious medical issues or anything, but he was colicky for the first six months of his life, and had a bunch of random ailments (back-to-back ear infections, a giant canker sore on the tip of his tongue that prevented him from nursing or taking a bottle for 10 days, etc.) that led to a lot of misery and lost sleep for all of us.

He’s physically healthier now, and developing normally, but he’s still an anxious, clingy banshee screamer who hates sleep–seriously, when he’s at full volume he sounds like a concrete saw or a dentist’s drill or a Nazgul or I don’t even know what. The CIA tortures people with noises like this.

I dragged my husband and myself to therapy when the baby was 6 months old, because I could see that things were bad and not getting better, and it turned out we both had postpartum depression–I didn’t even know men could get it. Therapy helped somewhat through the end of the year, but then we had to end it because the deductible reset and it was no longer affordable.

I work a full-time job and my husband is a stay-at-home parent; I’m the primary parent whenever I’m home in the early mornings, nights, and weekends, so we’re actually both doing about 50% of the child care, only I’m working a full-time job on top of that, and he has some sensory issues that take a very high toll on him having to listen to the banshee screaming all day every day.

We’re exhausted and miserable, we’re barely able to be present enough to connect with our daughter and give her the care she needs, and we’ve almost given up on trying to spend time together and connect as a couple. He gets a few hours to himself in the evenings between dinner and bedtime, but my free time is so fragmented and unpredictable that I’ve given up trying to do anything meaningful with it–if I get a moment where no one is demanding anything of me, all I do is scroll mindlessly on my phone, because I have no way of knowing when I’m going to be interrupted next.

Everyone keeps giving me “it gets better” speeches, but I’ve lost the ability to think far enough ahead to believe that. So yeah, we’re pretty burned out.

The reason I’m writing to you is because I feel really guilty for being burned out. We’re white, straight-passing, middle class, and able-bodied, and I have a stable, well-paying job with (mediocre, but still) health insurance. My husband’s parents are local to us and our daughter is able to spend the night over there every week or two, to give us a bit of a break (the baby can’t do overnights yet, he’s 13 months and doesn’t sleep through the night reliably, plus he gets very anxious, unhappy, and screamy when left with other caregivers). We have an amazing community of friends who have brought us meals, babysat the kids for free so we can get out for a bit, and provided endless sympathy and commiseration.

But even with all this privilege on our side and all the help we’ve been able to get, I’m still running on fumes with no end in sight, and beating myself up about it because so many other people have it so much worse than us, and why can’t I do better and be better when I have so much to work with here?

Do you have any advice that could help me stop feeling bad about feeling bad? How do I let go of the guilt so I can move on with just the ordinary difficulties of everyday life?

— Burned Out

 

Dear Burned Out,

I absolutely ache for you.

There is a part of my psyche that is trapped in the hellish twilight of sleep deprivation, exhaustion, and despair that is having very young children.

I was so sleep-deprived that I hallucinated bugs crawling on me. Our baby and then toddler kept having more tantrums than really seemed normal, and it got worse when we tried to rock and hold him. Then when we had two, and everything got exponentially harder. My kid was punching his preschool teacher and throwing fits nearly constantly. When we found out that he had Tourette’s and autism, we added in at least two or three weekly doctor and therapy appointments to our plate. I didn’t make very much money and my spouse stayed at home, we had no relatives in town, and we felt that we couldn’t leave our baby with anyone else, either.

I had a particularly difficult time when raising my boys when they were young, with very little if any outside help.

And I think you have it worse than I did.

I need to say that again to be very clear: You have it worse than I did.

I tell you this because what you are describing sounds just unlivable. A baby who cries especially loudly AND constantly AND won’t sleep, just by itself, is a nightmare. Caring for that baby while trying to take care of a bright, verbal, inquisitive, high-energy four-year-old sounds nearly impossible. It’s exhausting enough to run around with a high-energy kid, especially an inquisitive one, without anything else to do.

You literally never get a break. Ever. Your parents might take the four-year old two or three times a month, but you are still with that baby who screams and screams. And working full time while also taking the burden full-time of caring for your children as you’re giving your husband a break is going to burn anyone out.

Now. Let’s look at your privileges, and how they are helping you right now.

You say you have parents who live close, who give you a break every once in a while. I mean, that’s great, but since you feel you can’t hand over the baby, this is only a very slight advantage, and it’s mainly for your daughter who will get uninterrupted and quiet adult time.

You say you are able-bodied. Perhaps you’re able-bodied as far as mobility is concerned, but one of you has sensory issues that make a crying baby even more difficult for him, which is not only awful for him but also means that the breaks he need are vital, probably daily without fail, and that puts more pressure on you. You were BOTH diagnosed with Postpartum Depression.

So . . . ableds? Not so much.

You’re middle class with a stable, well-paying job. Really? I mean, you can’t afford counseling. I’m sure that having a stable job means you worry about money and housing less than many other parents, but that supposedly well-paying job doesn’t leave you with enough cash available for counseling, and I assume that it doesn’t pay you well enough to hire some help to come help a few times a week. And you’re living on one wage, which is really hard to live on for most people, even if your job is stable and well-paying.

I’ve gone through this in painstaking detail because I want you to see that you genuinely have it rough, and some of the privileges you have aren’t quite as privilege-y right now for your family.

Anyone in your situation would be completely burned out. Anyone in that situation would find themselves sobbing in the car on their way to work, probably deeply stressed in their relationships, and barely able to function.

The United States, man. Our hateful late-stage capitalism doesn’t offer many jobs that pay enough to support a family. We do not offer our citizens reliable, quality, or remotely affordable health care, so many of us do without. We have absolutely no preschool or toddler daycare or childcare options that are anything less than insanely expensive, let alone equipped for kids who are struggling like your baby is. Our housing costs are skyrocketing, groceries have become an absolutely giant expense that somehow our government doesn’t have to count toward any measurements of our economy, and then we have this fucking Calvinist bullshit that we’ve taken from those religious lunatics who first came here and started murdering the local populace: if you suffer, it is because God wants you to suffer. If God wants you to suffer, you must be a shitty person.

It’s not explicitly religious anymore, but it sure is woven into the fabric of our society so tightly that even someone like you who barely hanging on feels like she doesn’t have the right to feel burned out by her incredibly high-octane life.

In other words, all of this isn’t the economy. It isn’t a lack of supports for new parents. It isn’t having to work full time to pay the bills when your kids have intense needs. IT’S YOU. ALL YOUR FAULT. YOU DID THIS TO YOURSELF.

If we keep blaming ourselves and chasing our tails, we’ll be too worn out and filled with self loathing to make any systemic change, yeah? Our system is specifically designed to make you feel this way, to perpetuate itself.

So, some people have it worse. Why should this somehow sustain you and give you buoyancy and hope? There is always someone, somewhere, who has it worse. This does not mean that we do not also suffer and that we do not also have completely human reactions to inhuman conditions.

You are having a completely human reaction. If you weren’t feeling burned out, I would suspect you of being in denial.

Don’t let your stupid hateful capitalist Calvinist culture and our barebones economy and poisonous messages jammed into your subconscious tell you that you have no right to be miserable in a miserable situation! Sadly, you have earned this burnout and to expect yourself to sail through it like Mary Poppins is just too. Damn. Much.

 

PS PLEASE take a deep breath and leave your baby with other people for a few hours here and there, and even overnight. So what if they need earplugs for a few hours or have one rough night of sleep? You say you have supportive friends. Let them support you in the way you really need it.

How do I deal with other people’s resentment?

/ haddayr / Leave a comment

Dear Gentle Butch,

I’m a woman in my mid-50’s, and through great privilege and luck I’m able to support myself by working as a writing/editing/website contractor just a few months per year, and go on some great trips, too. I call myself semi-retired. Due to bipolar and some physical limitations, it’s hard for me to work full-time for more than a few weeks, anyway.  (But I’m not able to get disability benefits.)

I know my roommate resents it; she’s said as much. She’s 62 and will retire at 70 at best.  I’ll be moving soon — it was a short-term thing so I could save for travel and she could catch up on her mortgage — but I feel it from other people, too. I don’t brag about my situation, but I don’t want to fake a job or  volunteer more than I want to just so other people feel better. Someday I’d like to find a new partner, too, and I think that will be hard(er), because so many guys are still ambitious at my age, and/or would also feel resentful.

And yes, I do spend a lot of my extra free time second-guessing and worrying about how other people feel.

– Lucky but Guilty

 

Dear LBG,

Oh, wow.

This letter reminds me of how people will say shit to me like: “I wish _I_ could get parking right near the door; or “I wish _I_ could take my dog everywhere with me!”

They imagine how great my life is with my rockstar parking and my mutt always by my side, and think it’s unfair that they don’t get those things. It doesn’t occur to them for even twenty seconds that the reason I NEED the damn parking and service dog is because each of my days is more difficult than each of their weeks.

I am incredibly glad that you have been able to support yourself and even go on trips working part-time contract. That must mean, as you say, that you’ve had the privilege and luck of being able to save for retirement, which so many of us just can’t do living paycheck-to-paycheck and/or just not having the option.

Own your privilege! Great! You know that being able to save for retirement is a privilege that you had.

But don’t paint yourself as an heiress, either.

If you don’t qualify for disability, you are probably paying a shit ton for health insurance since you’re in your mid-50s.

I’m guessing you’re pretty good at living on not too much money. I mean, you moved in with a friend to save up for a trip. That’s frugal as fuck.

Your lifestyle doesn’t seem particularly swank. I don’t know what your physical limitations are, but it sounds like you are both mentally ill and physically disabled, and you can’t work full time for more than a few weeks without it taking an incredible toll on you. Sounds like and you’re making the best of your situation.

I’m sorry your roommate resents someone who has been helping her pay her mortgage. I’m sorry she won’t retire until she’s 70. (I will never retire, and I don’t hold it against someone who will be able to retire at 70.)

But I think if she looks at a very frugal person dealing with multiple disabilities who has been able to call her situation ‘semi-retirement’ and then resents her for it, that says a lot more about her than it does about you.

Now. What do you mean by you “feel it from other people, too?”

Do you mean that other people make passive-aggressive remarks like “must be nice” or whatever other dumb-ass shit resentful people say to make other folks feel bad?

Or do you mean that your roommate’s resentment has made you a paranoid — so paranoid that you seem to have actually considered pretending to work more than you do — and you’re extending that attitude to other people?

Only you know, of course, whether this is real stuff or anxious projection on your part. Either way, I think the reaction is the same — don’t let yourself get baited.

I legit don’t know what to say about men. I mean, don’t you think middle-aged women who are attracted to men have all twisted themselves into pretzels enough to try to fit whatever it is that they think “men want?” Fuck it. Enough. Don’t.

Would you really want to be with someone who found partnering with a woman who is semi-retired some sort of disqualifying event?

Perhaps you can think of this situation as an Asshole Detector. Anyone who responds to “Hi; I’m semi-retired” with “ew get away” just isn’t relationship or friendship material.

How Do I Handle a Possibly Disabled Bicyclist After an Accident?

/ haddayr / Leave a comment

The other day in my van, when exiting a parking lot and joining traffic, I struck a cyclist whom I didn’t see because he was coming at me against traffic from behind a relatively blind corner. (Everybody is fine.) My issue is that the fellow, who was alone, seemed to have a disability of some kind, but which of course I was unfit to identify–perhaps it was only some deafness or a speech impediment, but perhaps he had a major developmental disability or past head trauma. Whatever it is, it seemed relevant to the accident in a couple of ways. First, it was a little difficult to communicate with him and understand him (ordinarily I would call that MY problem, but when collecting information and accounts of an incident, accuracy is critical). Second, I don’t know if his condition(s) was a factor in the accident itself, which seems like it could affect legal and insurance liability. And finally, I was unsure that he was even able to be a competent legal advocate for himself in that moment–for example, he wanted to leave the scene and forget about the incident, but was persuaded to stay.

With everything that needs to be coped with on the spot during such a stressful and confusing moment, how should one navigate these issues? Should I have inquired about his disability status either on the spot or later? Should I have asked whether he had a guardian or the ability to make legal decisions on his own? If he insisted on leaving the scene and I had sensed that he was unfit to make the decision or answer the question, should I have essentially DETAINED him until emergency help arrived? These scenarios are horrifying to imagine, potentially intrusive and insulting, and potentially VERY inflammatory if I ended up being mistaken. But I want to be a decent person and make sure I’m looking out for everybody involved, including protecting someone who may be vulnerable.

– Panic at the Citgo

Dear Panic,

First things first: you did the right thing. You did not physically restrain him, someone talked him into staying, and you did not ask intrusive questions regarding his competence.

In general, it’s probably best to assume that anyone who has just been in a terrifying accident (and regardless of fault, being hit by a van when you are on a bicycle is terrifying) that may or may not have included head trauma is not really competent to make the decision to leave the scene.

Beyond that, I am glad you didn’t ask him any questions about competence.

Those of us with obvious disabilities (whether it is an accent related to cerebral palsy or a hearing impairment, mobility equipment, or obvious limb differences, etc) so often have to deal with other people’s preconceived notions of what our brains must be like.

At best, people will do something like what they often do to be when they see my forearm crutches: Speak. Very. Slowly. And. Loudly. Using a ‘Special Voice’ generally reserved for children, and when I answer quickly and fluently they take a huge sigh of relief. At worst, people will do something like what a woman did to my friend Johanna a few years ago while she was trying to go holiday shopping alone: the manager of the store took one look at her and started SCREAMING about people who abandoned their charges and who left this poor girl alone and then she called the cops, so busy screaming and flailing at my friend’s clearly disabled aspect (Johanna has cerebral palsy) that she did not even notice the communication device or that my friend was trying to respond to her.

By the way, unlike me, Johanna is a Stanford graduate.

I understand that you were looking out for the man and that you had real concerns, but you have no idea what was going on with him. Maybe he was high. Maybe he was deaf. Maybe he had CP. Maybe he WAS cognitively disabled. Either way, all of those questions about being competent to represent himself legally can be worked out later if and when there are legal procedures — by himself if he does make his own life decisions in legal matters or by whomever is assigned this duty.

Your job is to do exactly what you did: look out for other people’s welfare, and try to talk them into staying until help arrives. regardless of his intellectual state, age, or possible brain damage. These are not things you needed to know; these are things that might have come out later if it were necessary for anyone to know. If he had left anyway, providing a detailed description of him to the police/ambulance when they arrived would have sufficed.

So: it’s good not to make all of these demands of information from him not just because it might be rude, but mainly because it’s not your business and it’s not actually particularly relevant to the situation for you to know this information.

This letter originally ran in bitterempire.com on December 15, 2016.

When Do I Hold The Door For Someone In A Wheelchair?

/ haddayr / 1 Comment

Should I hold the door for people in wheelchairs? It seems only courteous; I hold them for people pushing strollers. But it feels super awkward if they’re not right behind me and I stand there holding the door for like a minute and a half while they make their way up the ramp. Help! I don’t want them to be stuck outside, I live in a cold climate!

There is so much angst over door opening and wheelchairs! And now you’ve added freezing to death on top of it.

Before I answer your question, let me put one of your fears to rest. Disabled people go around all day to jobs, to the grocery store, to parent-teacher conferences. There are doors everywhere. Opening doors from the seat of a wheelchair is a very basic wheelchair-using skill. I’ve done it hundreds of times. I, even though I live in Minnesota, have never frozen to death due to a lack of ability to open a door.

Also, I love opening my own door. The world sees me as so helpless, and opening a door from my super-sweet tricked out ultralightweight chair is a smooth process and I can show off a little.

That said, let me give you some basic etiquette for door opening: If you are directly in front of a person in a wheelchair, you might ask if you can hold the door open for the person. If s/he says yes (this is a really, really crucial step), hold open the door as you would for someone with their arms full or in a stroller. Make sure that you do not open the door in a manner that makes you stand directly in the person’s way. Hold it wide open and stand behind it, keeping yourself completely clear of the entry. I’ve had so many well-meaning people hold open the door only to stand in my way. I do not want to crush the toes of a well-meaning citizen, and thus we are in a rather awkward standoff. We both apologize a lot.

Holding open a door for someone few yards behind you — regardless of how they ambulate — is just super annoying and makes people feel like they have to scurry for you. Don’t do it.

If you are one of those caretaking types who can’t stand the thought of not helping someone, I am giving you permission to go into the building, hide behind a column, and if the wheelchair-using person is struggling with the door, to come out of hiding and offer help.

Originally published as Bitter Butch for bitterempire.com Nov. 20, 2014.