why I don’t like the term “Recovery”

Disclaimer: If you find it empowering, that’s fantastic! I don’t want to shake that. Your mental health and well-being are much more important than my opinion. This is post is about my personal relationship with the term.

CW: potentially ableist language, references to death, descriptive imagery of quasi-suicidal feelings

I don’t like the term “Recovery” because it suggests that there’s something to recover.

Which works if it’s like: “Last week I sprained my ankle and for a day it hurt too much to put weight on it. Over time I was able to start moving it around and whatnot… and now I can get around the house no problem. Though to be honest it’s still a bit swollen and painful.”

That is recovery because I remember a time when my ankle didn’t hurt, wasn’t stiff, and I could walk normally. I have a sense of there being something I had, then lost, and an idea of what getting it back would be like.

And for some mental health experiences I think that might make sense. If it were just a matter of my father and both my grandmothers and my dog who was like a brother to me dying within 5 years of each other during my adolescence, then maybe there would’ve been something there before those traumatic experiences fucked everything up that I could try and recover!

But there’s not.

Because my parents didn’t know how to parent me in the ways I needed. Which isn’t really their fault. They didn’t get the parenting they needed. Probably because my grandparents didn’t get the parenting they needed either. Because… well, there are reasons why my great-grandparents left their homelands and came to the U.S., possibly with small children – or in the case of one of my great-grandmothers, completely alone. I don’t know the specifics, but I can look into what was happening during that time.

This isn’t about that. “Recovery” isn’t about that. It’s about my life and experiences.

Which were shit.

Not all of them. But the term “Recovery” suggests to me that I should be looking back at my life before those traumatic experiences to find something I want to recover. Most of what I see is darkness. Most of what I feel is pain. And the moments that aren’t are ones I can’t get back, because the people they belong to are dead. And to be honest they’re overshadowed by the pain. The sorrow. Grief? Anger? that horrible sensation of being alone and hungry gazing into the Abyss while some terrifying monster eats you from the inside and you’re drowning and all you can hear are your own cries…

Or we can go with the language my therapist used: she called it Complex PTSD. There’s not one or more easily identifiable traumatic experience(s) I could pinpoint and say yeah, before that was good, let’s recover that. Instead there was a childhood of emotional abuse and neglect.

When I look back at what I had, I’m grateful that on a material level there was never anything I needed and couldn’t access. Food, clothes, shelter, and healthcare were all there. I was safe for the most part, physically speaking. There were aspects of my education that could’ve been better, but they were offset by things that were better, so… I dunno. I’m just trying to acknowledge that I’ve always had financial security, and that’s extremely important. And my grandmother was awesome. And my mom did what she could – at least, she meant well, she just… I’d say she could’ve done better, but if that were true she probably would’ve done better, is all I’m saying.

My point is: I don’t see anything that I want to recover.

I see things I wish I could go back in time and change. I see things that make me sad, angry, wistful, nostalgic, grateful, or glad that part of my life is over. I see strengths and areas for growth and things I’m proud of and things I regret and experiences I’ve learned from.

And I see myself hanging on through all of it – yes, loving people supporting me (including my mom), that’s very important – but it’s the choices I make that guide me from one place to the next.

The choices I’ve made are why I’m breathing today.

So there really isn’t anything to recover. The things that would be worth recovering are still there – are more there now than they were in the past. There have been things for me to discover, maybe – like being able to acknowledge my own resilience – but not recover.

It feels more like I’m BUILDING something. It’s constructive. I’m in Constructory.

I’m looking back at all this pain and realizing it didn’t kill me. And if I could live through that, I can live through just about anything. I’m giving myself permission and acknowledging my ability to recognize when I need to “just hang on” for a while, and trusting myself to do it, and to get my feet back under me when there’s something to stand on again. I’m learning to reach out for help when I need it, (and figuring out who and how to ask,) and actually using that help constructively.

I’m looking back at the things that have made me feel alive – and the things that haven’t – and choosing what to keep, what to discard.

And unlike with my ankle, where I know what it’s like to walk normally, and I’m trying to get that back, I DON’T KNOW WHAT I’M BUILDING. It’s not something I had before, it’s something new and it’s both exciting and terrifying. For example, I was freaking out for much of the semester because I’d never felt so happy and it was great but it was also overwhelming. Like in April when I had a fantastic meeting with my advisor and he told me I was getting an A in music theory… then I sat on the stairs for an hour crying… and then I went to the library to do my homework.

I’m embracing and building upon my love of music. Composing. (and theory!)

I’m composing myself.

Thoughts on the Las Vegas Massacre

From what I’ve seen, the dominant narrative about the perpetrator of the recent shooting in Las Vegas is that he probably had a gambling addiction, might’ve been badly in debt, kept to himself, and didn’t really settle down anywhere. Notable, IMO, is the insistence that “he didn’t have any political or religious affiliation.” And of course there’s the “lone wolf” narrative – all very typical, sweep it under the rug, nothing to see here, just another shooting in the US. Argue amongst yourselves over gun control.

Oh and we’re not saying it was mental illness, but the whole narrative kinda implies it. Just saying…

I don’t buy it. Something about this whole scenario doesn’t feel right. There’s something we’re not being told.

Assembling an arsenal, sneaking it into a casino hotel room, that just so happens to overlook a country music festival … All that takes planning. I don’t believe he “snapped” – it must’ve been premeditated. Why would someone put time, energy, and resources into planning something like this? I don’t know, but usually it has something to do with bigotry.

And I’ve never heard of someone with an actual, professionally diagnosed mental illness doing something like this. When people are in crisis they may withdraw from social groups and activities, they may act in ways people consider strange, they may hurt themselves, and/or they may (rarely) pose a threat to someone else. They don’t open fire on hundreds of people.

I’ve probably said this before but I’ll say it again, we need to figure out why white men keep perpetrating unspeakable acts of violence. And we need to do something to stop it. Yes, now, before people forget about it or get swept up in the next atrocity. There’s something going seriously wrong in the US with how people think, how they treat each other, how they respond to tragedy. Everybody’s angry – and rightfully so – but the anger isn’t being used appropriately. We’re all at each other’s throats, or bonding in our hatred of someone or something, and white men are committing murder with impunity.

We need to stop it. Now.

No Stigma, No Shame, More Happiness

I saw this on Facebook and wanted to share it. As someone who both wears glasses and takes medication to keep my brain from trying to kill me, I feel it is an excellent analogy:

FB_IMG_1496322585743

The text reads:

“I wear glasses. Can I manage without glasses? Well, yes, probably. I could squint a lot, constantly move up close to anything I want to see, take the bus or a taxi if I want to go anywhere. I could just accept that I’ll never be able to see eagles flying in the sky or whales jumping out of the ocean.

But why? Why try so hard to manage life when I could just put on a pair of glasses? No one would ever suggest a near-sighted person should just work harder. No one would say ‘Maybe that’s just your normal’ to someone who needs glasses. They would say ‘Let’s go to the eye doctor and get you a prescription so you’re able to see again.’ You shouldn’t have to try so hard.”

– My doctor (paraphrased), when I expressed doubts about going back on an anti-depressant. (via webreakthenwebuild)

(via squidilydink)

This is such a good analogy because nobody thinks about it like this. If you wear glasses, you literally need constant use of a medical aid to experience the world like most people do. If it were anything besides glasses, that would be considered a disability. But needing glasses is an extremely common, visible, and accepted form of disability to the point that we don’t even consider it one, we just accept that some people need glasses and that’s perfectly normal and there’s nothing wrong with needing to rely on them.

That is how all disabilities and illnesses should be seen, and how we should look at treatment for them. You have a problem, and you need help dealing with it, and there’s nothing wrong with either of those things. That’s perfectly normal and that’s okay.

(via ninjarobotclone)

And there are a couple more lines but forgive me I don’t feel like typing them out. The important parts are quoted above.

Putting aside the issues of for-profit pharmaceutical companies, our limited understanding of how certain drugs affect the brain, abuses in the mental illness management system, and that our society is so fucked up at least a quarter of us meet the criteria for mental health diagnoses while the rest are just plain miserable …

While we work on fixing that stuff: some of us need medication (and/or therapy) to function, just like some of us need glasses to see, and that’s okay. There should be no stigma associated with it, no shame in engaging in treatment, etc. When I finally get around to acquiring my next pair of glasses, I look forward to picking out frames I like and feel confident wearing. Similarly, it feels really good to own the work I’m doing in therapy and the medications I take: to be honest and unapologetic about what I need to not only live but (dare I say it?) thrive. It’s part of who I am, similar to how my glasses are part of my style (or look, hehe).

Of course I’m fortunate in that I have access to the care I need and communities where talking about one’s therapist, medication, and/or mental health is … if not normal, at least accepted. It’s understood that we’re all people and we all have our issues, we all struggle sometimes and we all need support. That shouldn’t be a matter of me being fortunate, though, it should be normal – like how acceptance of people wearing glasses is normal now, where once wearing glasses was stigmatized.

Learn more about being stigma free, and take the pledge.

Solidarity.

Still Abusive

TW: full text of a conversation with my mother, in which her responses are abusive (gaslighting)

It started with an online swimsuit sale. I’m not sure why my mother decided I need a new swimsuit – I think the ones I have are fine – but she “strongly encouraged” me to take advantage of the sale… and have her buy the items for me so she can get “points” (credit card reward program?). I haven’t completely overwritten my programming, so I agreed to do the online shopping in her apartment, even though I knew I should have known better.

Clothes shopping has always been triggering for me, and swimsuit shopping is the worst. I’ve been working hard to love my body the way it is, but the internalized fatphobia and body size-related insecurity that tortured me my whole life springs up anew when I simply cannot find clothing in my size.

And then there’s the whole being non-binary thing. At least with everyday clothes it’s possible to do some gender-bending: no one needs to know I wear “men’s” boxer-briefs and an undershirt instead of a bra. T-shirts are considered unisex. Socks and shoes – who cares?! So far I haven’t ventured into trying to find “men’s” pants that might fit me, mostly because they’re simply not designed for hips that are considerably larger than the attached waist. But finding a pair of jeans shaped to my body feels so good, I can keep wearing “women’s” pants without too much dysphoria. For now.

Swimsuits are very gendered. Just the fact that men are expected to run around bare-chested and women have to cover up sends my brain into a dysphoric frenzy. Ideally I would love to just swim naked – I had the opportunity to do that once and it was glorious! No gender performance, just diverse bodies. Everything floats when it’s not tied down by a swimsuit. I loved the sensation. I felt so free!

So I’m swimsuit shopping online with my mother. She’s sitting at the computer with me mostly behind her, looking at what she thinks I’ll like. Fortunately, we agreed that the “women’s” swim shorts this company offers are far superior to typical “women’s” swimsuit bottoms… but she was going to get a shorter length than I wanted (so I had to argue with her about that) and the ones I wanted were out of stock in my size (of course). I convinced her to add the swim leggings (way more coverage than I’d like, but still better than the alternatives). And I don’t remember if we added a couple pairs of “men’s” swim trunks together or I added them myself later, but either way they’ve been ordered. Maybe they’ll even fit! (A bit of a long shot, since the measurements are smaller than my hips.)

Then we started looking at tops. I would have been happy with a simple “shelf bra” tankini thing. They all have underwire or soft cups. Ugh. We get in an argument about it. I’m concerned because with a tankini one has to consider both chest (“bust”) and hip measurements, and mine are too different to have one size fit both properly. I think everything I own is too big on the bust and too small on the hips – I just try not to worry about it. We have another fight, I get her to let me sit at the computer and look at stuff myself, without having to try and convince her to click on each item for me. Nada.

I decided to look at bikini tops, thinking it might solve the hip-bust ratio problem. Bad idea. They’re all basically bras. I don’t know what I was expecting – maybe something more like a sports bra at least? But no, my dysphoria went through the roof. I eventually found and selected a couple “men’s” rash guards, which as far as I can tell are essentially fitted t-shirts designed for swimming?

Again, way more coverage than I wanted, but probably a million times more comfortable than the weird boob-obsessed gendered performance nonsense Mom probably would have bought for me.

So, it was pretty cool that this company/site had these options. And Mom was pretty cool about “letting” – god, I’m an adult, who they hell is she to decide what I’m “allowed” to wear or buy? – me get mostly “men’s” swimwear.

But look at me, writing over 700 words about swimsuit shopping! Throughout our interaction she kept saying little things that were bothering me: “You really need to give yourself more time to get places.” “I went in your apartment and thought ‘I just have to help them out,’ so I did your dishes.” “I don’t know how you’ve been handling your finances.”

That last one was the last straw. I used to keep my checkbook perfectly balanced. I used to have my own income, so I could save money every month and otherwise be a financially-responsible adult. But I don’t have my own income, and I haven’t figured out how to consistently track finances for two people (especially since Fox is the one who makes all our money and spends most of it). I’ve been reduced to checking our bank account balance once a month, to make sure we have enough in there to pay our credit card bill. I’m not happy with the situation; it feels wrong; I’m embarrassed by it. But between my mental health issues, the work I’ve been doing in therapy, volunteering full-time for the Bernie Sanders campaign (which I love), and being primary caregiver to our pet rats, I consider it an accomplishment that I manage to pay the credit card bills on time. And eat, occasionally. That requires constant vigilance.

So I walked out. “Please don’t walk out on me.” I barely even looked at her. I’d fallen mute. I couldn’t say or do anything. My legs just carried me out the door and down the stairs and into my apartment.

A little while later she was leaving the house, so I hugged her and apologized and told her I love her. She told me that she wasn’t pushing the bra-like tankini innards on me because of gender, but because she likes to have support for her anatomy. “You want some support,” she said to me. “No, you want some support,” I told her. “That doesn’t mean it’s what I want.” I escape the conversation – mostly because she needs to leave. Everything seems peachy.

She even called on her way wherever she was going to say she’s proud of me for all the work I’m doing on the campaign.

Wednesday.

On Wednesday she posted one of those image-with-text meme-like things on my Facebook wall:

I am not your friend. I am your parent. I will stalk you, lecture you, drive you insane, be your worst nightmare, & hunt you down when needed – because I love you.

I got very angry, hid it from my timeline, and proceeded to send her multiple text messages:

Posting threats on my Facebook wall is not going to improve our relationship – quite the opposite. You and dad and your in-laws and other family members already drove me insane; that’s why I’ve needed to work my ass off in therapy for the past 6 years.

You’re not my friend, you’re my parent – so ACT LIKE ONE. Get the therapy you need to be able to do it properly. Stop using me as your therapist. I’m not your friend or your therapist I’m your adult child. Respect that I’m an adult and respect my boundaries. Help me in the ways I ask you to; give me the advice I ask for; listen to me and support me! And think about how what you say might impact me before you say it.

I’m grateful for everything you do for me and I understand that it’s not easy. But enough is enough. If you think it’s okay to stalk me and knowingly do things to “drive me insane” then you need to make some effort to learn how to parent responsibly.

“I do these harmful things because I love you” is what abusers say.

The rest of the conversation proceeded in a rather alarming fashion (from my point of view) during which she did not apologize.

M: “I do not abuse you. You are taking things too seriously.”
Z:  “No, YOU are not taking me seriously enough. You never have.”
M: “Stalk you?”
Z:
M: “Not a threat. I thought it was cute. And told you that I love you. Something parents always say. We make many sacrifices for our children. We should talk later. Take things lighter. Love you.”

I freaked out and called Wakana. She got so upset with my mom, I had to ask her to stop yelling. She told me about a million times that I was not overreacting, I was having a healthy response, I need to separate emotionally from my mother, and I should unfriend my mother on Facebook. So that’s what I did, and that’s the text I sent Mom.

The next text I got from Mom was telling me I needed to move my car. We haven’t spoken since. No apology.

I’m not talking to her until she apologizes to me.

In the meantime, I got a nice short androgynous haircut that I love and everyone has complimented me on. I have a street to canvass and volunteers to call this afternoon. I’ll be working in the campaign office for a handful of hours this evening. And then we begin our GOTV (get out the vote) efforts in earnest. 9am-9pm Saturday, Sunday, and Monday. And, I imagine, the full time polls are open Tuesday. I signed up to be part of the voter protection team on Tuesday, so I will either be doing that or juggling it with work in the campaign office. It’s finals week on steroids. Crunch time.

If you can help us out go to map.berniesanders.com for local events and/or berniepb.com to phonebank. If your state’s primary is on Tuesday, visit canivote.org to look up your polling place and/or other useful information.

This is what’s been keeping me going. I need Bernie to win on Tuesday.

A Line Through Time

One of the worst things about my mood disorder is feeling disconnected from my past self/selves. I feel like I’ve lost something and I want it back, but I’m not even sure what it is. Most of my work with Wakana has focused on reclaiming aspects of my Self and my life experiences that I’d repressed, abandoned, or otherwise been ashamed of. It can be very painful It is excruciatingly painful, but with every step I feel closer to being whole.

Last night I decided to make a timeline of my relationships. I started with meeting Banji over 15 years ago and continued through college, my first full-time job, grad school, meeting Fox, Banji moving away, getting married, all the way to this year. I realized there was at least one major transition – including but not limited to beginning, losing, and ending relationships – in every calendar year since I graduated from college about 10 years ago.

There is a concentration of intense transitions from 2011 through 2013. As Banji was preparing to move away, I essentially proposed to Fox – despite only knowing him for a handful of months. Spring 2011 was the last time I facilitated music therapy sessions for actual clients. Banji moved over the summer. I applied for an internship and thought it was a sure thing, so I waited months to learn whether I’d been accepted… only to be rejected twice. By the end of that year I’d moved in with a friend from college.

I don’t have much written down about 2012. I spent a lot of time trying to find the right medication and psychiatrist, and ended up taking some meds that probably did more harm than good. I adopted a pair of rats early in the year, one of whom died about a month or two later, and I had to euthanize the other by the end of the year.

Banji moved much closer to home (but still 5 hours away) around the beginning of 2013. I followed suit by moving back in with Mom; I’ve barely seen or talked to my former roommate since. Mom got knee replacement surgery, my uncle died, I had to drop the classes I’d waited 2 years to take because they were triggering my worst symptoms, Fox moved in with me that summer, and we got married in the fall. Looking back on it in that context, I think I must have been crazy!

Some of the above transitions were out of my control, but others (like moving) I imposed on myself. I honestly don’t regret them; they were necessary for me to reach the point where I am now. But they definitely added to my stress and were not entirely beneficial to my mental health. I couldn’t do most of the things I was used to doing; I stopped doing things that had been meaningful to me. I made at least one decision that I do regret now. In hindsight I think my worst problem may have been the guilt and shame I felt because of the problems I was facing – particularly as they affected my pursuit of a career.

Things have been improving since last summer, when Fox and I started marriage counseling and finally gained access to the medication we need (thanks to the Affordable Care Act, aka “Obamacare”). Fox has been working full time for several months now. I did well through a challenging semester on a sub-therapeutic dose of my medication. Now I’m on a therapeutic dose. We’re regularly using the skills we learned in marriage counseling (which our therapist terminated 2 months ago). Our relationship brings us both a lot of comfort and joy.

Of equal importance is that Banji and I have worked through at least some of the issues impacting our relationship; we’ve become closer as a result. We’ve adapted to the current physical distance between us. Whenever we meet in person, we blend continuing fun traditions from the past with planning for the life we intend to build together. We’re not where we want to be – living within a 10-minute drive of each other – but we’re hopeful.

I haven’t been putting off applying for internships because I’m afraid of rejection. I’m not even sure it’s accurate to say I’m afraid of success. Starting an internship would be Another Huge Transition: new relationships, new routines, new responsibilities, even a new role/identity. The dynamic between Fox and me would change – hopefully for the better, but it would still be a change.

This is something I actually have some control over; I am exercising my control. I am not procrastinating and I do not have anything to be ashamed of. I am choosing to postpone another huge world-shattering transition because I’ve learned that it’s harmful to have too many of them in such a short period of time. There’s a lot of pressure to start my internship as soon as possible, and a lot of benefits that could come from doing so. But there are also benefits to waiting, at least for few more months.

I need some time to breathe.

National Mental Health Awareness Month and the Importance of Language

Every month is Mental Health Awareness Month here at a day with depression, and I’m glad to have the support of President Barack Obama’s proclamation for one month each year.

Among the topics he discusses – care for veterans, reduction of stigma, that “taking action to help yourself is a sign of strength,” etc. – I personally am most grateful for the Affordable Care Act. As a result of this legislation, Fox and I have health insurance that enables us to receive the medication and marriage counseling we need. Around this time last year I felt like our marriage was falling apart. Now we’re working together and supporting each other. Fox has held down a job for 6 months (and counting!). I am less than a week away from completing the last two classes I need for my Master’s degree; after nailing my piano final last night(!) I feel like I’m ready for internship and will be an awesome music therapist.

I have a bone to pick with President Obama, though. His proclamation begins:

This year, approximately one in five American adults — our friends, colleagues, and loved ones — will experience a diagnosable mental health condition […] and many others will be troubled by significant emotional and psychological distress, especially in times of difficulty.  For most of these people, treatment can be effective and recovery is possible.

(emphasis mine)

I wish he would use more inclusive language; that would be a great way to reduce the stigma around mental health issues. The language in this proclamation suggests that mental health issues affect other people, even if “they” are the people “we” interact with every day. It seems like the President is trying to distance himself from the people who live and struggle and sometimes even thrive with these issues. He’s practically saying: “this thing exists and we need to be aware of it – and just to be clear it doesn’t affect me, and I don’t think it affects you.” IMHO, that contributes to the stigma.

I imagine that we’re all in a room, and Mr. Obama is on the stage giving a speech, and I’m in the front row because hey, I’m the one imagining it. He’s talking to me… about me, as though I’m not sitting right in front of him and can’t hear him. I’m probably one of the people who are the happiest to be there listening to him, and yet he’s not really talking to me. I think maybe he’s talking to the person sitting next to me.

However, more than 20% of the people in this room are the population he’s talking about (as though we’re not there listening to him – probably filling the front-and-center seats). The person sitting next to me might feel the same way I do; they probably think I am a member of the President’s intended audience. But neither of us will admit it, because then we’d be marking ourselves as “other” – as not really belonging in that room where “normal” people go to become more aware of us. (How ironic is that?) Instead of connecting with each other, we each go home feeling more isolated than ever. (And the “normal” people go home unaware that we were literally sitting right in front of them.)

What about us? I wish someone would say: “This year, approximately one in five of us will experience a diagnosable mental health condition and many more of us will experience significant emotional and psychological distress, especially in times of difficulty. For most of us, treatment can be effective and recovery is possible.”

That wording makes it sound like mental health issues affect everyone, and needing help with them is normal. If I attended a speech and the speaker said that, I would feel like I belonged in that room. Isn’t that what reducing stigma is all about?

You don’t have to be one of the “one in five” – or the “many more” – to use this language. You just have to be willing to admit – to yourself and everyone else – that you could be. If you’re brave enough to do that, you can help us feel safe admitting that we are. That’s how you let us know we’re “not alone.”

Disability

I finally did something I should have done at least 2 years ago: I contacted the disability resource center on campus regarding accommodations for my mood disorder. It feels like signing my own death sentence, or at the very least admitting defeat. I would never have done it, but I need an extension to complete my degree (I “should” be graduating this semester) and my academic adviser suggested this as my first step.

disability form

part of the registration form requesting information about the type of disability, problems it causes in an academic setting, previous and currently-requested accommodations

I’ve been putting the whole thing off because of internalized stigma around mental illness, and possibly also some ableism. Saying I have a disability – rather than “I’m going through a rough time” – marks me as different, deficient, other. Possibly for life.

My hope for the future has relied heavily upon the belief that the difficulties I’ve been facing (my whole life) are temporary – “a minor setback” – and soon I will “recover” and have a “normal” life. Ironically, I was able to take this step because I’ve been feeling better: with more hope, positive self-esteem, determination, energy… but the obstacles to functioning in society are still real. I keep saying I just need things to settle down a bit so I can get my feet under me, but experience says they never will. (And to be honest, I’m not sure I’d want them to. For things to settle down as much as it seems I need, life would be boring.)

Life is chaotic. Our society isn’t built for people like me. (It actively and persistently oppresses us.) I can learn, grow, adapt, take meds, reach out for support, request accommodations… I recently learned about MTHFR mutations and suspect they may be a contributing factor; I plan to talk to the APN about genetic testing and supplements that might be helpful, in hopes we can get my insurance to cover them. But even with that: much if not most of the food that is available to me has been “fortified” with folic acid, the very substance that may be interfering with my body’s functioning.

My point is, social, institutional, economic, and other norms need to change before marginalized groups and individuals will be able to live “normal” lives.

If that’s what we even want. “Normal” as defined by whom? I don’t want to “be productive” and “contribute to the economy.” I want to thrive. I want to express myself creatively, share joy with others, feel safe and whole and loved…

One of the things that makes requesting disability accommodations at school so painful is that academic excellence used to be a major strength – possibly the major strength – I relied on to survive. I wasn’t being challenged on my level in elementary and middle school, so all I really had were my grades. They were my proof that I was worthy of existing. They provided some stability in a chaotic home. Even as I began to be challenged in high school and undergrad and developed a love of learning, my grades were a primary source of self-confidence and pride. Academic excellence was – and to some extent still is – an important part of my identity. Too bad it doesn’t actually mean all that much in the real world.

A woman smiles broadly while holding up a letter.

Maria was very happy to receive an A for the term!

Now my classes aren’t really about learning information and answering questions on a test or writing papers. I can do those things – when I manage to concentrate, which is becoming quite difficult. They’re about practical skills, social skills, being and doing and interacting – often on a deeply personal level. They’ve been churning up the painful realities of my life – that’s what forced me into therapy. I can’t just put my blinders on and memorize facts anymore, I have to look in the mirror, internalize things, face my worst fears, and guide others through them.

I have to juggle academic responsibilities with everyday life, which has become a lot more complex since I graduated college. There’s always something. Getting Fox to and from work every day. Remembering to take antibiotics that are making me sick following periodontal surgery. A problem with our plumbing that’s got Mom stressed out. Everyday chores… I never got the hang of them. And for some crazy reason I’ve decided that now is a good time to adopt new pet rats…

from reelmomevents.com

from reelmomevents.com

The worst part is, I have to prove that there’s something wrong with me. The head of the disability resource center replied to my email: she won’t even schedule an appointment to talk to me until she receives documentation of my difficulties. The guidelines for said documentation are quite intimidating:

  • a complete DSM-IV diagnosis (which Wakana actively avoids and psychiatric professionals have disagreed on)
  • description of my specific symptoms (I could write that)
  • my current treatment
  • “identification of the substantial limitation on a major life activity presented by the disability” and how that applies to academics
  • recommendation of specific accommodations that are supported by the diagnostic information
  • all this information has to be on official letterhead that includes the mental health professional’s credentials and contact information

I think Wakana and I could come up with something useful for most of those items, but we’ve drawn a blank when trying to come up with specific accommodations relevant to an academic setting that would actually help me. (I doubt “not having to demonstrate the skills I’m supposed to have been developing over the course of the semester” is an option.) That’s part of why I wanted to talk to the head of the disability resource center: to explain my situation and learn what requests might be considered relevant and reasonable. (e.g. What accommodations might reduce the social anxiety I experience around having to demonstrate my skills?) There’s information on the website, but it’s not really relevant to my situation.

It also irks me that throughout the site, “it is the student’s responsibility to” fight tooth and nail for these accommodations. I’m thinking perhaps the people who came up with these policies do not have disabilities – psychiatric or otherwise. At the time(s) when I would have benefited the most from having a documented disability and certified requests for accommodations, I was in no condition to be acquiring such documentation and meeting with indifferent strangers. (One might argue I was in no condition to be taking classes, but that perspective might exclude me from higher education indefinitely. Isn’t that what the disabilities resource center is supposed to help avoid?)

Reaching out for help with psychiatric issues isn’t easy. People say “go get help” like it’s the easiest, most obvious thing in the world. It’s not. It’s counter-cultural. It’s acknowledging a reality most people don’t want to accept: that we’re vulnerable and have fears and doubts and feel pain … That dedication and hard work (and good grades) don’t provide happiness, wellness, or financial stability. People don’t want to consider the possibility that maybe the dominant Western cultural expectations aren’t realistic and may even be harmful. They don’t want to believe that we’re honestly having a problem; they tell us we’re being lazy.

In a way applying for disability accommodations is admitting defeat, it’s saying: “I find your game too difficult, so I need you to change the rules for me, specifically, because I’m less capable than everyone else.”

Except that clearly it’s not everyone else.

And when we do reach out for help, the response is far from welcoming and supportive. We’re put on waiting lists, required to fill out mountains of paperwork, interrogated, told we can schedule an appointment after providing documentation, etc. It fuels the cognitive distortions that are common in depression, especially “I don’t matter.” and “No one cares about me.” It makes following through on the initial request for help very difficult.

Almost as though the very people who are supposed to be helping us don’t want to.

Transgender Tuesday

gender

Lately I’ve been questioning my gender identity, especially since I wrote about it the other day. The temptation to refer to myself as the gender I was assigned at birth, to allow others to use the labels and pronouns they attribute to me, and to give up on expressing my queer gender identity has been very strong. It doesn’t help that I’m invited to a gender-exclusive social gathering on Fox’s side of the family; just the fact that I’m considering attending raises the question of whether I have the right to call myself transgender.

There’s a voice in my head telling me I should “come out” already – to disclose which gender I was assigned at birth – but this blog is the one place where I’m relatively free from the social effects of gender. I feel like people relate to me as just another person, who doesn’t need to be labeled and treated a certain way based on secondary sex characteristics – which is exactly what I think everyday life should be like. If I don’t want to allow that in the one place where I have some control over such things, why should I do it anywhere?

Mostly it’s because I want to be accepted, to belong. I’m tired of feeling like an outsider. I expect that people are more likely to accept me if I conform to their gender expectations; identifying with the gender they insist on perceiving me as would make that so much easier!

genbenjan

But then I look back at some things I posted over 2 years ago, and realize that the ways I think about my gender haven’t changed:

For years I have felt my sense of my own gender change throughout a given day, depending on my current situation. … I think these “feelings” about my gender are a reflection of cultural understandings of masculinity and femininity that I have internalized. … In social situations I might adopt the gender role and expression most appropriate to fit in, though I find that difficult and uncomfortable when taken to either extreme. Alternatively, I might take on the gender role needed to balance what everyone else is doing: …

I am uncomfortable being referred to as the gender I was assigned at birth and that people still assign to me based on physical appearance, especially when that influences my behavior and/or how they treat me. It can have a negative effect on our ability to experience a genuine human connection as equals. I am also annoyed with having to disclose my “sex” in order to do register for services online or send emails to representatives in government. Why should I have to disclose information about my anatomy in order to express my opinions or use services on a website? (or do pretty much anything else?)

On being gender queer:

The biggest thing I’m struggling with is determining the extent to which I want to assert my gender queer identity. … To some extent I do identify with the gender I was assigned at birth because it corresponds to my biology. I love my body and don’t want to change it – most of the time. (If I could do so reversibly I totally would!) In some ways I can relate more strongly to others who share my biology than to those who do not, even if our gender identity and expression are not always the same. … I don’t want to be put in a box. … I don’t want to be socially and otherwise separated from people I can sometimes relate to better just because we have different biological “equipment.” … I’m trying to decide the extent to which I want to change my attire and/or hairstyle to be more androgynous (or, make them adaptable to the gender I want to express on a given day). … It’s so hard and I feel so alone. I need to find community.

All of the GenderQueer Confessions I linked to are still relevant.

What it all basically comes down to is: “My body is just a body. It doesn’t mean what you think it means.”

So far I’ve found this blog to be incredibly helpful for working through my mental health issues. I’m hopeful that it can be just as helpful for dealing with gender issues …

“Transgender Tuesdays” has a nice ring to it. The LGBTQ+ groups I’ve been meaning to join (since the beginning of the semester) meet on Tuesdays. So why not make a feature? I’ll share what I learn about being transgender, any resources I find, and my thoughts/experiences. I’ll also include others’ perspectives when I can; I’d love to have guest bloggers!

Blog for Mental Health 2015 – aka the elephant in the room

a smiling elephant walking toward the right side of the image and spraying water from its trunk: over its back and onto the words "2015 blog for mental health"

Blog For Mental Health 2015 badge by Piper Macenzie

This is my third year taking the pledge:

“I pledge my commitment to the Blog for Mental Health 2015 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”

I absolutely love that the primary image in this year’s badge is an (adorable) elephant! It just so happens to fit perfectly with where I am on my mental health journey:

I’ve spent the past 2+ years learning to accept that my “mental illness” is an inextricable part of me, while also working to unlearn the distorted beliefs and once-adaptive behaviors that keep me from fully expressing my true Self. One of these beliefs is perfectionism, particularly when it comes to playing guitar and piano in class: I believed I had to conform perfectly to academic, musical, and social expectations in order to be accepted by my peers. I have also spent my whole life trying to hide the fact that I (like anyone else, though perhaps sometimes to a greater degree) have times when I feel insecure, frustrated, angry, guilty, vulnerable, sad, anxious, confused, etc.; that there are times when I don’t know what to do and times when I make mistakes. I did this throughout my childhood and adolescence to provide some stability to a family that often felt determined to tear itself apart. But it became overwhelming as an adult.

Eventually I just couldn’t do it anymore, and I didn’t know how to function in society without doing it. So, I withdrew. At times I withdrew a bit too far, disappearing into video games. But, for the most part, I think the withdrawal was both healthy and necessary. It enabled me to prioritize my mental health above other concerns for the first time in my life. It required me to be honest with myself and those closest to me, in ways I’d never dared before.

Blogging for mental health has contributed immensely to this process. This blog gives me a safe place to share my thoughts on topics I might otherwise consider taboo. Writing helps me get a better sense of what I’m thinking and feeling, to better understand what’s really happening beneath the sudden flashes of anger or crushing guilt or hurricane of conflicting emotions. (It probably has something to do with a distorted belief.) Sometimes I receive comments from other bloggers who offer support, congratulations, advice, encouragement, and the knowledge that someone can relate to my experiences. I can see that people are reading the blog (even if they don’t respond directly); my voice is being heard. And I have the opportunity to read about the experiences of other bloggers, to connect with them through comments, to feel a sense of community.

(Sounds good, right? Join the Blog for Mental Health Project!)

So, elephants. I’ve come a long way on my mental health journey; I’m replacing my distorted beliefs (e.g. “I have to be perfect to be accepted.”) with more realistic ones (e.g. “It’s okay to let my imperfections show.”). I’m even trying out new behaviors, like telling my small group I’m not sure what to do or admitting to a classmate that I’m (also) terrified to play in front of our piano class. So far they seem not only to accept, but maybe even to like me.

I think the next step is to be honest about my mood disorder in my everyday life, with people who know my legal name. I won’t be as candid as I am on this blog, but it’s important to talk about mental health issues. I especially need to be able to do it in my music therapy classes, conferences, and (someday) my work environment. I want to help create communities of mutual support, where talking about mental health issues is the norm and it is safe to be genuine.

Not only does talking about mental health issues give others permission to do the same – which could save a life – but it has been and still is a safety issue for me. I need to be able to say things like “that was triggering for me,” “I’m not role-playing anymore; this is how I actually feel,” or even “I need a break from this, can someone come out to the hallway with me?” When I speak up and receive support from someone else, my emotions and destructive thoughts can’t overwhelm me. I feel better about, well, everything.

Blog for Mental Health FAQ | Take the Pledge! | 2015 Official Blogroll

Reframing

many picture frames of different shapes and sizes, painted a variety of colors, standing up and leaning against each other. from magpieweekend.com

many picture frames of different shapes and sizes, painted a variety of colors, standing up and leaning against each other.
image credit: Becca at magpieweekend.com

Lately I’ve found myself reframing stressful experiences by highlighting the positive aspects, seeing them as learning experiences, or considering the new opportunities they provide. A prime example of this occurred while I was walking to class last Wednesday, feeling absolutely horrible about myself for being late. I thought about how I felt (almost suicidal), what had triggered it (fear that I would never belong in a group), how I would have responded in the past (stayed home, possibly hurt myself), and how I was behaving at the time (going to class!).

I wasn’t exactly in the best frame of mind to think positive thoughts about myself, but I imagined the instructor saying, “Wow, you were feeling that insecure and you still came to class? That shows a lot of dedication! This must be very important to you.” In other words, I imagined someone else saying something positive about me – the thoughts were my own and they contained positive self-talk, even though I couldn’t express and experience it directly as such. That’s… actually quite healthy.

Since then I’ve taken some time to put the whole incident in perspective. There were a lot of factors that made doing my schoolwork and showing up on time for class on Wednesday very difficult for me. I’d spent most of the weekend decluttering, a task that – while necessary and healing – I found very stressful. Fox had offered to join me in continuing that task on Monday, but instead we ended up shoveling snow. I stayed up all night in preparation for a daytime sleep study on Tuesday… during which I did not sleep. Lack of sleep alone probably would have been enough to undermine my ability to function on Wednesday, and I was already painfully aware of the 17th anniversary of my father‘s death on Thursday. I believe it may have predisposed me to cognitive distortions like only viewing the negative aspects of things, generalizing, and catastrophizing.

As much as I’d like to be functional at this time of year, it seems most adaptive to accept that I will need to take “mental health” days on and around February 5th – and to plan accordingly. At the very least, I need to do my best to avoid making extra appointments around this time, especially since I never know how the weather might impact my plans. It’s not a weakness, it’s making an informed decision and engaging in self-care.

Considering everything that was going on, I handled myself quite well on Wednesday. I actually got up, got dressed, and tried to go to class. I traveled all the way to the classroom door before my anxiety got the best of me. The class has a strict attendance policy, so I’d be lying if I said I wasn’t concerned about the consequences. But all I did was miss one class. That’s a very minor mess up in the grander scheme of things.

More importantly, when I got home I wrote a blog post about my thoughts and feelings. I expressed what was going on instead of allowing it to consume me; this kept me safe until Fox came home, hugged, and comforted me. Even though I couldn’t reach out to anyone directly, the public post let Banji know what was going on. She reached out to me and we had an awesome, healing conversation. The written record has also made it easier for me to talk about and reflect upon what happened. This blog is an awesome resource that I’ve created for myself and that you, my readers, have helped maintain as a safe space. Thank you.

The imagined conversation in my most recent post is a reframing of my Wednesday class as an opportunity for growth and healing. This is a big deal for me. Yalom (the author of our primary textbook) recommends understanding mental illnesses in terms of how they affect our relationships – both with other individuals and our ability to function within groups. He instructs (group) therapists to treat these difficulties, for they are the true pathologies clients face. In this class, not only do I have to function in a group where the expectation is that we’re all “normal” (to be honest, I have a hunch that at least 20% of us have mental illnesses – probably more considering we’re all studying to be therapists)… but I’m also studying myself as the “other” as I read and listen to class discussions about people with mental illnesses, “their” problems, and how to treat “them.” It’s all about what I need and often feel I can’t have, what I simultaneously strive for and run away from.

This class is the embodiment of my psychopathology, including (especially!) the internalized stigma. I’ve already had to drop it once; on Wednesday I thought that history would repeat itself. But in reality I have a choice, and that choice is mine alone. I can decide I’m not ready to face it so directly; far from “another failure,” this option opens all sorts of opportunities to me. I could focus more on activism, composing, write a book, find a job, volunteer, hang out at Fox’s workplace all day, read every book in the library … there are too many possibilities. I spend my life playing Skyrim because I’m overwhelmed by all the possibilities. But they’re there! And each one comes with its own challenges. Each one will probably cause me similar problems, all linked back to some aspect of my psychopathology. Each one holds some potential for personal growth.

Or I can keep going to class on Wednesdays and be in that group, whatever that means. I’m increasingly convinced that it needs to include coming out as having mental illness, even if the conditions are not ideal. I could be so vague as to say “I have a mood disorder” or explain that “I live with depression, anxiety, and occasional hypomanic symptoms.” I’m leaning toward the latter because it paints a more interesting, complex, and accurate picture.

I really hope that whatever I say will encourage the other students in that class who have mental health issues to speak up, because there’s no way I’m the only one. One of the readings for this week (by Yalom) was all about how the therapist needs the courage and confidence to be human in the therapy group – fallible, affected by group members, and in the process of learning about zirself through zir experiences in the group. Part of being human is having mental health issues – by Yalom’s definition, difficulty relating with others and functioning in groups, and even doing things that aren’t necessarily healthy in an attempt to be accepted by a group. Group therapy is therapeutic because it provides a safe place to stop doing those unhealthy things and try out new ways of being with individuals and groups – a space that is created and maintained first and foremost by the therapist. How can we create such a space for our clients, if we can’t do it for ourselves?

Before I can do it for my (future) clients, I need to do it for myself. I’m already a member of a group of student therapists who are learning to do group therapy and (probably) feel just as uncomfortable as I do. As much as I want to claim that I’m coming out to help and/or teach the other students in my class, what it ultimately comes down to is that I can’t struggle to pass as “sane” anymore. It hurts too much and requires too much energy. I need to be in the world and I need to be fully myself, including my mad self. Why not here and now?

Links:

Everyday Health: Cognitive Restructuring

Mind Tools: Cognitive Restructuring – with free downloadable worksheet