Let’s talk about disability

even though it’s still hush hush in our society

Photo by Jonas Hansel via Foter.com under CC BY-NC-SA

You’re not supposed to talk about disability. You’re not supposed to be on disability. You’re supposed to feel bad about having it.

Especially if you’re on it for a mental illness.

If you can’t walk, everyone accepts your disability.

Mental disabilities are harder for people to understand. Why exactly can’t you work if you have bipolar disorder? Why can some people with bipolar disorder work and others with it can’t?

People don’t know about mental illness. We don’t learn about it in school. It’s hard to get your own family to read about even when you have it—they don’t have time, they’re not interested, they don’t believe it exists, or whatever. They’re not motivated to understand [you].

Employers aren’t supposed to discriminate based on disability, but they do. If you have gaps in your employment history where you stayed in a psychiatric hospital—for example—you’re not going to get hired.

I have been diagnosed with:

  • bipolar-type schizoaffective disorder
  • obsessive-compulsive disorder
  • tardive dyskinesia

I have a history of:

  • chronic suicidality
  • homelessness
  • substance abuse

I struggle just to not want to kill myself every day. Recently I had a period of about four days in which I got through the day from waking up to going to bed in a smoother way than I had in six months. That is a victory for me: making it through the day without a potentially deadly psychological crisis.

So why can’t I work? Everyone has to work, don’t they?—whether they like it or not, they have to work.

It came as a surprise to me to learn in recent years that some people are relatively ok with their lives working in the same companies I worked in for over a decade of my working life. That doesn’t mean they love every minute of it. That doesn’t mean they wouldn’t rather be in Acapulco. But they don’t do things like walk into a room of web developers and tell them their code is so bad, I’d rather kill myself than have to work with individuals of their caliber.

I did that.

I meant it.

My employer saw it as a problem.

Recently my doctor suggested I do some contract work online. He suggested that I do a few jobs for free to get myself established, because otherwise—according to him—I probably wouldn’t get any work at all. Here’s my résumé. I shouldn’t have to work for free. At all. Ever.

Part of why I need disability is I cannot work. I have to take a four-hour nap every day to keep my consciousness sane. With my TD, I cannot type sitting up—I have to lie down to get my body stable enough to do that kind of fine movement.

But part of why I need disability is I can’t get work. No one is going to hire me—because I can’t do the job. Yes, I have the technical skills to program software in a high-tech company, but I don’t have the physical and mental ability to work in an office anymore. Companies aren’t required to accommodate me by providing an office where I can lie down to type or allowing me a two-hour work day..which is about all I can work each day. There’s no way I could work at a restaurant—I hardly have the motor skills to eat a meal myself. I have to use sippy cups so I don’t spill my own drink—how could I serve a drink to someone else?

I am a useful person. But that doesn’t mean I can get a job. That’s why disability exists: for the gap between who companies will hire and the totality of people who exist. I would work if I could. I love the work of software engineering. I am good at it. It pays five times what my disability pays. It’s the difference between having money to burn and not really being able to live independently, monetarily. I have to live with someone else. Finding someone to live with, given my illnesses, is difficult. Most of my family won’t even talk to me. I’m hoping, soon, to move in with a friend in a similar situation and pool our resources. We think it’s going to be awesome. Most people would call it subsistence.

Disability gets re-evaluated every three years, I think. I live in fear that my disability will be taken away, because it would likely result in my being homeless again. Listen to that phrase: being homeless again. Have you ever been homeless due to a mental disability, due to mental illness? I have. And if some doctor decides that I’m able to work..when in actuality I can’t find a job..I will be homeless again.

Being on disability isn’t some amusement park ride. I live in Nashville, Tennessee. I have for a year. In that time, I’ve only found one psychiatrist who will see me. Others are booked out so far that I would run out of my medication before I ever got to see them. That is life-saving medication—without it I become suicidal, manic, unmanageably psychotic. Other psychiatrists won’t see patients who have any element of bipolar or schizophrenia. That’s right. They went to school to learn how to deal with the panoply of mental illnesses and have decided for whatever reason not to see patients with certain mental illnesses—the ones I have.

And even the psychiatrist I saw for eight months eventually decided not to see me. He dropped me as his patient because my case was “too complex” and suggested I get a psychiatrist at Vanderbilt. Vanderbilt had a three-month waiting list. My now ex-psychiatrist agreed to provide me medication until I found a new psychiatrist, but the kindest way to describe what he has actually done is to say that he has provided that medication begrudgingly. Where before, if I needed extra care on a day when I didn’t have an appointment, he saw me that day. Now, when I’m running out of a medicine which, when stopped suddenly, can cause seizures, and I call his office to request a refill, he doesn’t return my calls. A week passes. Two weeks. I call again. He ignores me. I have to go to extraordinary lengths to get prescriptions for medicines that if I stop taking them could give me seizures. The other medicines I take keep me from killing myself, reduce my mania and psychosis, and lessen my TD symptoms.

So: getting medicine that is saving my life is a full-time job. Employers aren’t on my side: I’m not profitable (in their limited view). Doctors aren’t on my side: I’m not profitable to them, either. Depression is no joke, but anxiety and depression patients are apparently more desirable than bipolar and schizophrenia patients. Think about this: a doctor who is trained to treat my illnesses refuses to treat patients with those illnesses. I’m asking you to see that even finding a doctor who is willing to treat me is an extremely difficult task. And I’m not asking to be treated for free!—I’m paying them thousands of dollars a year to do so.

I wouldn’t trade my life with anyone’s. I am rich beyond belief in hope, talent, love. But I am asking you to see that having mental illness, in this society, takes you out of the driver’s seat of getting work. It’s not that I don’t want to work or some ridiculous shit like that. With my diagnoses, with my history of erratic office behavior, with my gaps in employment history where I was detained in mental hospitals, I can’t get a job.

I need my disability.

Not because I’m a useless person. Not because I couldn’t be a “useful” member of this society (read: economy) if things were arranged a little differently..but because my diagnoses lock me out of the world of work and I need a little help from the society to which I have given so much, in order to simply survive.

MY BRAIN IS RUNNING THIS PROGRAM

What you think when you’re manic


When you’re manic you hand things like this to your psychiatrist. I did so five years past.

A printout of a webpage you made that explains, clearly, how your brain has been infected by a computer program you wrote years earlier.

Your mania is so infectious that you’re sitting on the floor of a nurse’s office having convinced her to happily print off hundreds of pages of documentation to support your claims.

She thinks this is absolutely necessary.

You convinced her it was.

When you hand it to your psychiatrist, she doesn’t read it. She just makes a note in your chart that says:

..the patient continued to have some overtly psychotic ideation and presented me with many notes which confirmed his psychotic thought process..

Mania sometimes includes psychosis.

Your brain is infected with a computer program?—These things make perfect sense to you when you’re psychotic.

Then, later, they seem irrelevant. I am currently completely disinterested in the possibility that a program has infected my brain. To be rational, I must accept the possibility that one has. But the truth or falseness of this idea is of zero interest to me at the present time. Maybe a program has infected my brain; maybe it hasn’t. It makes no difference to me anymore.

Sexual side effects

The specific side effects of SSRIs

Photo by falcon0125 via Foter.com under CC BY-NC-SA

Selective serotonin reuptake inhibitors (SSRIs) are a class of antidepressant which cause parts of your brain which reclaim serotonin as parts of the serotonin cycle to take in less serotonin, leaving more serotonin in the parts of your brain where, when present, serotonin causes pleasure.

They make you feel better.

Unless you’re bipolar, they don’t get you high. Most people who take them don’t “feel” anything when they do—they experience medium- and long-term improvements in the quality of their life and their mood. Things just go better in your life. If you were depressed, you’re less depressed. You don’t even notice the effects until you look back over weeks or months and realize your life is just going better.

But listed on the package of every SSRI is this at-first innocuous and nebulously stated and confusing little catch-all phrase: “sexual side effects.” That’s all it says. It doesn’t tell you what those side effects are. Our society is so scared to talk about sex that to list the actual sexual side effects would be considered obscene, but the fact is that knowing what these sexual side effects are is an important factor in deciding if and how to take this kind of medication.

So what are the sexual side effects of SSRIs? I have taken one of a couple of SSRIs for years (Lexapro and Celexa) and my information here is based on my own experience, interviews with friends also taking SSRIs, and research. SSRIs:

  • decrease sex drive
  • cause difficulty reaching orgasm
  • cause trouble getting or keeping an erection

If you have a major mood disorder, these side effects may be worth the benefits provided by the SSRI. But not once in my career as a psychiatric patient has a doctor specifically discussed what these “sexual side effects” are before prescribing one. No worry though—once you start taking an SSRI, you’ll quickly discover them for yourself.

It might seem at first that the inability to cum, or difficulty in cumming, or erectile dysfunction, are the most crucial effects on this list. They immediately affect your ability to get to that sweet spot of sex: the orgasm. But this is not the case. When I look at my own experience and consider the discussions I’ve had with long-term SSRI users, it’s the side effect of “decreased sex drive” that is most impactful.

A friend of mine who takes Celexa recently told me she hasn’t masturbated in three months. She’s just not interested. That’s decreased sex drive, and when you experience it, you are forced to realize how important sexuality is to a human being’s identity—or the experience of being human. Of course the degree to which sexuality is important to a person’s identity varies from person to person, but in general feeling sexual, having sexual thoughts, masturbating, and having sexual interactions and relationships with others is a fairly central aspect to how we think about who we are. It is for this reason that I consider what most people call decreased sex drive to be the most damning sexual side effect of SSRIs.

Not being able to cum impacts your pleasure.

Not feeling sexual impacts your idea of who you are.

SSRIs can blunt your sexual identity. It’s not just “decreased sex drive” like Oh, snap, I don’t want sex as much anymore. It’s a dimming or loss of a key part of what made you who you were. Sex isn’t just fun and games. It’s not just orgasms. It’s an integral part of how we feel like who we are. Feeling sexual in response to other people (or images, or smells, or whatever causes us to feel sexual) is not just an activity that we do, it’s part of our self. “Decreased sex drive” hardly begins to describe this pivotal side effect of SSRIs. It would be better described as “loss of sexual identity.” It’s not that SSRIs cause you to be unaware of sex. But they may cause you not to care about it as much. And that’s where, if you take SSRIs for a long period of time, you may feel the loss of part of your identity that goes far beyond the sex act, orgasm, and the obvious but simplistic aspects of sex which are stunning but not as fundamental as feeling like less of a sexual being.

You can work to overcome the inability to cum. Certain SSRIs affect people differently in that area. Switching from Celexa to Lexapro makes it easier for me to cum. You can schedule the taking of your pill so that your antidepressant doesn’t interfere as much with sex. Some people can psychologically learn to overcome the orgasm-hampering effects of SSRIs and cum through the effects of the drug. You can stop taking it for a few days and quickly regain your normal sexual function.

But for most people who take SSRIs, it’s not the actual sex that’s the problem. The problem is these drugs fuck with your sexual identity. Our feeling of ourselves as sexual beings is a big part of who we are, for a lot of us. Losing or dampening that aspect of our identity is the real sexual side effect of SSRIs.

“Bipolar Insights” by Dr. Jay

A funny, forward-thinking, insightful presentation on bipolar

I found this presentation on bipolar disorder by Dr. Jay Carter, a psychologist, which I think is unusually good.

If you have time and interest, watch the video. If not, please consider skimming my notes, below, which quote and summarize some of Dr. Carter’s ideas.

Notes

  • “It’s a medical problem rather than a psychological problem.” In 2008, five prominent psychiatrists met and “decided that bipolar disorder was not a psychiatric illness. It is a medical problem.”
  • Lack of sleep (as in mania) would cause irritability and delusion in anyone. “Any one of us in this auditorium who didn’t sleep for a week would be hearing voices and seeing things that weren’t there.” “The worst symptoms aren’t really symptoms of bipolar disorder. They’re symptoms of..sleep deprivation.”
  • “If you want to know what it’s like to be manic, drink seven cups of..coffee or take some amphetamines.”
  • “The person’s prefrontal lobe goes out, so they don’t see the consequences of their actions. They’re thinking six or seven times faster than normal—so they’re brilliant—don’t argue with them, they’ll win. But they don’t really see the consequences of what they’re doing. They don’t see the bigger picture of things. They don’t have insight, foresight, or hindsight.”
  • “If it’s bipolar disorder, it’s not anxiety..it’s agitation.” You need to know this in case a doctor tries to give you anti-anxiety drugs for your agitation. What will help reduce agitation in a bipolar patient is a mood stabilizer.
  • “Many decades ago we thought that diabetes was a mental health problem. People would have low blood sugar and they’d be acting weird, they’d be acting drunk, they would have fits.” Employers didn’t want to hire anyone who had fits. “Now we know different, and now we have insulin which manages the diabetes very well and the person can lead a normal life. With bipolar disorder, we’re not there yet. First of all, we’re still calling it a mental health problem—a psychiatric problem—and it’s not, it’s a physical problem. And the person might act a little funny or weird, but they’re not funny or weird. That’s just how they’re acting at the moment, just like a person with diabetes. The problem is, for most people with bipolar disorder, the medication doesn’t make everything ok. With insulin, sometimes that insulin’s going to make everything ok. With bipolar disorder..for some people it might, but for most people all it does is manage” the illness.
  • “Anyone who would say to somebody, ‘Well if you just took your medication, everything would be ok’..that’s not really true.”
  • You see three things from a manic person “that really turn people off”: ego, arrogance, and entitlement. (As opposed to esteem, confidence, and purpose.) “With bipolar disorder, through, you cannot tell what a person’s personality is like when you see ego, arrogance, and entitlement. You’re always going to see that. That’s a symptom of bipolar disorder.”
  • His daughter has bipolar disorder. “She’s the most gentle, compassionate, empathetic, and quiet person you’d ever meet. But when she’s manic: ego, arrogance, and entitlement. .. They can’t help it.”
  • The suicide rate for bipolar is 1/5. Counting the percentage of undiagnosed, it’s more like 1/4. Most suicides happen in the first two years of onset of the disorder.
  • 1.2–3% of any population has bipolar disorder. “There are some evolutionary psychologists who think that mother nature is up to something. Because there really are people who think faster than you do. They get impatient with you because you don’t talk fast enough. There are people that don’t require as much sleep as you do. And they can be very sharp and witty and charismatic.” This might be mother nature experimenting with the next evolution of humanity.
  • “A person can be perfectly sane and totally psychologically healthy..and still have a manic or depressive episode. It has nothing to do with a person’s psychological fitness.”
  • “3.4% of families have bipolar disorder. And those are the exact words I mean. I don’t mean an individual has bipolar disorder. It’s genetic—how much more family can you get than that? If you’re in the family and you didn’t get it, you’re just lucky. I don’t know of any families where one person has bipolar disorder [where] it doesn’t affect the whole rest of the family. And that’s the secret to treatment of bipolar disorder. You treat the family. Not the individual. The individual has the poorest outcome, whereas if you treat the family, that has the best outcome.”
  • People with bipolar disorder self-medicate more (60%) than people with any other mental health disorder: cocaine for depression and alcohol for mania.

Those are some of his more interesting points, to me, from the first 20 minutes of the presentation. The whole video is an hour and 40 minutes long, but if you have bipolar in your family, I recommend watching it.

Catch each other when we fall

What didn’t happen in Bethany Yeiser’s case

This is one of my favorite videos on YouTube. It is Bethany Yeiser telling her story of being a straight-A college student, to being lost and homeless and schizophrenic, to stumbling onto medical care, getting treatment for her schizophrenia, finally finishing her degree, and then writing a book about her experiences.

This did not earn its place as one of my favorite videos on YouTube because I like the story. I like that it’s a success story in that it has a happy ending. But while this may be a story of success for Miss Yeiser, it is also a story of the failure of our culture to help one of our members sooner and better than we did.

Please watch the video and then hear my brief reactions.

Compliments

  • First, Miss Yeiser: Bravo to you for not giving up. Also, you’re well spoken and engaging and subtly funny which is part of what, to me, gives this presentation its humanity.

Complaints

  • Where is her academic advisor? When a straight-A student fails all her classes fall semester of her senior year, where is the person whose job it is to be aware of that and get in touch with the student and figure out what the fuck is going on? Bethany didn’t fail—she was in the grips of schizophrenia! But the school did fail. They missed a major and obvious indicator that something was going wrong for this student. That intervention, support, and help were not made at the point that a straight-A student failed all her classes is a major failure on the part of the school. This whole story could have gone a different way right here.
  • Her becoming homeless in the first place. Of course this should never happen to anyone, but it’s so accepted in our society that I’m not even going to rail against it here.
  • The police. What the fuck. She was homeless for four years. She hung out around the university. The same police had to see her over and over for those four years. The police should be getting to know everyone in their area, learning about them, befriending them, have training in recognizing mental illness, and part of their role here should have been recognizing that they had a mentally ill homeless person on their beat and getting her some help! They arrested a woman twice who was talking to herself and took her to jail. It does seem likely that the second arrest was done as a favor to her to put her in a place with food on Thanksgiving, but they should have known years sooner that this woman wandering around the university was suffering mental illness and gotten her to a hospital!
  • All of this is not just for Miss Yeiser’s benefit. Yes, we owe it to her as a member of our society to help her when she’s in trouble, and we’d owe that to her if she was a straight-F student. But this is an example where you have a highly intelligent person capable of contributing to society way more than the average person who was incapacitated from making those contributions for four years because we as a society let her wander around sleeping in bathrooms instead of studying molecular biology, playing the violin, writing books, giving inspiring speeches, and who knows what else she can do. We missed out! WHAT KIND OF A SOCIETY LETS ANY OF THEIR CITIZENS—BUT ESPECIALLY THEIR SUPER-SMART ONES—SLEEP IN UNIVERSITY BATHROOMS AND SUFFER FROM TREATABLE MENTAL ILLNESSES WHEN THEY COULD BE BENEFITING US ALL WITH THEIR BRILLIANCE???!!! (And by the way, science has overwhelmingly found that high intelligence is correlated to mental illness. And a huge portion of the homeless are mentally ill.) We need to start seeing this world as a we thing, not a me thing. Untreated, mentally ill, homeless people are not an acceptable loss—in some cases, they’re the cream of the crop of our society, and if you help them a tiny bit, they may be able to help you heaps more. Not having a job or money at the moment does not mean you are a useless person!

Conclusions

I guess that’s it. It’s an issue close to my heart because I’m mentally ill and I’ve been homeless—and when I was it was because I chose not to do immoral things for a sociopathic boss. “Mentally healthy” people don’t make that choice—they look out for #1—they don’t let themselves become homeless (and that often involves cutting moral corners at work). Some of us crazy homeless people get there because we have a higher moral standard than the average employee. So..having a job is not always something you should be congratulating yourself on.

There was a time in my youth when I helped program Anthem’s health care systems. Then there was a later time, diagnosed with bipolar disorder, when I couldn’t get health insurance from the same company I helped build. Think of the irony there. We use people when they can help us, but we don’t help them when they need help..the very people who constructed our ability to help people in the first place. That’s insane.

We are one. As in: we are one organism. If you don’t see that, then that is a point of maturity you lack, but every mouth is connected to every hand and every hand is connected to every mouth. There’s no such thing as some of us winning and some of us losing—there is such thing as all of us winning and there is such thing as all of us losing. Bethany Yeiser, you, me, President Obama, Putin, Hitler, the bird in the tree, bigfoot, Mickey Mouse, some distant nebula..we’re all part of the same organism. When that police officer wants to take his wife to the orchestra for a date, he can’t. They don’t have a violin player. She’s hallucinating in a university bathroom, forgotten by us all.

That scene from What About Bob?

“You’re the one drawing all the dirty pictures!”

Photo by arcreyes [-ratamahatta-] via Foter.com under CC BY-NC-SA

Feeling pretty sick when I think of me and Mom’s relationship. In general, I think I take too much responsibility for the success or workability of relationships. I mean, with Amy, Suzanne, Dad..maybe this is sociopathically simple, but..I feel bad when I’m in communication with them, so I stopped communicating with them. ? That’s a reasonable, self-loving thing to do, right? It’s not like I didn’t give them advance warning things were wrong between us — and it’s not like they’ve tried to patch things up with me. They’re not knocking down my door! But still, with Mom and me, for what should be a simple loving relationship to fail so miserably, it does literally make me sick — like feel physically nauseated.

But when I take a break from her — tell her the conversation is over and keep my door closed for a day — I start to feel better, and ultimately I feel my joy again, listening to Regina Spektor and communicating with spiritual people on YouTube, reflecting and writing and doing my thing. It’s key that I feel that joy. That joy is the meaning of life for me. It is the form I need my life to take. And I have it with some people and I have it by myself. We all have faults, but my mom’s family, my dad’s family, and my family — we are really sick. There are tiny little pockets of health here and there, but, man, I don’t think anybody self-aware could get along happily among my mother and her siblings. I think that’s a pretty safe statement. No judgment. But they are chipmunk fucking nuts. A true sentence in that family is like a hand grenade.

I don’t want to assume what my Mom feels, but I can point to a couple of disturbing events of the last few days, with as little interpretation as I can apply, that seriously make me want to erect a wall between me and her.

  1. She and my old psychiatrist were worried about my mental state. They suggested I see a Vanderbilt psychiatric evaluator. I did. The evaluator and I loved each other, cracked up laughing, talked candidly, forthcomingly, in detail — I can’t help but remember the scene in What About Bob? where his doctor takes him to a psych hospital and then they cut to a shot of all the staff in a semicircle around Bob and he’s telling them jokes. So, back in reality, the Vanderbilt psych evaluator determines that I’m fine and don’t need psychiatric help at this time. We decide I’ll proceed with outpatient psychiatric services. She said there was a wait to see a psychiatrist and she wasn’t worried about the gap in care for me — she was comfortable with me making it across that gap, and we discussed contingencies for emergencies. When I reported this to my mom, she disbelieved the Vanderbilt Medical Center psychiatric evaluator and continued to maintain that I was in danger, in rough shape, in need of immediate care, etc. There is something not right there.
  2. Later, Mom said she felt “vindicated” that I “still [didn’t] have a psychiatrist” when it was two days after my old psychiatrist discontinued my care and I did not yet have a Vanderbilt psychiatrist. I said I wasn’t going to assume what Mom feels — and I’m trying to stick to that — but her use of the word “vindicated” there makes me question her priorities and her motivation and her realism, actually. What’s more important, being vindicated (or right) about my inability to acquire a new psychiatrist in two days, or the fact that I have been given a clean bill of health and that my finding a new psychiatrist is in the works? To me that’s a positive state of affairs for her, for me, for society at large — not a negative one that justifies her feeling vindicated about being right about..what, exactly? Why not enjoy that things are going well? What is her motivation? To be right about my “failure” to obtain a new psychiatrist in two days, or to be a part of me being well? And her realism: no one finds a new psychiatrist in two days. That’s not a realistic idea. That she expected that makes me worry about her aging, actually — but with my own illness I doubt I will ever be able to take care of her in her old age. I am not physically able. I may not be mentally able.

Anyway I’m left with that scene from What About Bob? — happily, sadly. I don’t take any joy from seeing my mom in the Dr. Marvin position. But the dynamic fits us now — and not just metaphorically — bone-dry literally: She is convinced I’m in dire straits, but when she takes me to a mental hospital, I’m cracking jokes with the staff and they turn me away at the door saying I don’t need to be there.

I am ok to walk the streets

According to Vanderbilt Medical Center—but not to everyone

Photo by clement127 via Foter.com under CC BY-NC-ND

Dear [cousin] Kristi,

[parts omitted]

This has been a weird and rough week. Mom and I going through gyrations where she thinks I’m sick and I don’t think I’m as sick as she thinks. I feel pretty on top of things except when she lays in on me or questions my state..I track my moods six times daily and have a pretty good (if subjective) graph of my ups and downs, which has been excellent information to have. It doesn’t summarize my whole emotional state, but it gives a picture into part of it.

My doctor dumped me. Lol. My psychiatrist told me my case was “too complex” for his office to handle and to seek care at the nearby and prestigious Vanderbilt Medical Center. My old psychiatrist will not see me again.

So I went to Vanderbilt with Mom on Friday for an evaluation. I spoke, without Mom, with the psychiatric evaluator, for 1 or 2 hours. We had a raucous time. Her assessment is that I’m doing just fine and don’t need any psychiatric help at this time!!!!!!!++++ Ha!!

But I’m taking next steps to find a psychiatrist and other doctors at Vanderbilt to have — hopefully — my whole team of doctors at the same place to facilitate all of our communication.

My mom, after hearing this assessment from Vanderbilt Medical Center, one of the best hospitals in the world, was unconvinced. She still thinks I’m having a problem..am in dire shape..etc.

I’m not sure what to do about this last fact. But if things keep going in this direction, I may need to move into an apartment for the disabled, or just somewhere else, to get away from her — dare I say — stubborn and unrealistic views of my situation.

When I left the evaluator’s office, I came to my mom in the waiting room and said, “Ok, we can go.” She flipped out and was like “No we can’t go. We need to get a psychiatrist and make sure you’re ok and—” (this and that and this, worrying and worrying). I said, “I have the number we can call to take next steps on getting a Vanderbilt psychiatrist. [Then very calmly:] It’s ok. We can go.” I know her energy around this comes from her love for me. I love that. I love her. But when the Vanderbilt psych evaluator says you’re ok to walk the streets, you’re ok to walk the streets.

Can’t wait for our next interchange,

Matthew


Update 20 August 2016 7:33am

As I’m posting this email, Mom sits down at my doorstep and a conversation starts which quickly unfolds to a fight. She watched my YouTube video that a YouTuber suggested I show her. She says she had no idea she was snapping at me, slamming doors, etc. I said when we were kids you used to slam doors when you were angry and you do the same thing now.

She said she’s not angry.

I said I feel emotionally unsafe living with someone who snaps at me like she does, who doesn’t trust even the evaluation of a hospital she idolizes when it comes to my psychiatric state—even after they say I’m ok at this time, she disagrees..with Vanderbilt.

She said she’s talking about my overall wellness, including my tardive dystonia..she wants that to be well, too. I said Mom, TD is a chronic disorder..you were with me in the neurologist’s office when he said it was permanent, that it’s never going away. So wellness for me in that area may never involve eradicating the problem. It means, as my neurologist said, improving my quality of life given that I have the chronic disorder. Same thing with my bipolar..it’s chronic..it’s never going away. The best we can do is manage it. We’re looking for a 90% solution, not a 100% one.

Anyway she was very sad and didn’t realize that I felt unsafe approaching her and saying, “Do you realize you just snapped at me? [etc]” I said no I don’t feel safe saying that to you..I feel sure it would cause a fight! I’ve felt like I’m walking in a mine field for the last eight months with her.

But I’m not about to do anything rash—like a sudden move to another city.

I’m hopeful that I can receive good care at Vanderbilt. I’d like to continue living in this [my friend’s word] opulent apartment with my mom. I’d like if Mom and I could simply learn to get along (as we have before—something changed).

But I don’t like living with someone who seems 80% unhappy with her own life and 50% unhappy with mine.

She said she felt “vindicated” because I still don’t have a new psychiatrist set up (even though it’s only two days after my last one let me go). I said why would you say that? It makes you feel good that I don’t have a psychiatrist? That you’re right about something and I’m wrong? What kind of person would get off on the fact that her son didn’t have a psychiatrist lined up just because that makes her “right” opposed to someone else’s “wrong”? I mean seriously—what the fuck??

I wish I understood what happened between me and my mother because this is a person I love and I think there’s every reason in the universe why we should be getting along fine. I’m asking the Everything to help me in this situation, to help me act in loving ways myself and find the best thing I can do for both of us. I surrender on this one.

Oh and I’m living on the edge. She hates it when I say, “Have a good day.” She says it’s patronizing. She just left. For the first time in months, I said, “Have a good day.” Because that’s how I roll. I tell people to have good days because I like wishing people well, and if people don’t like to hear that, they can find someone else to listen to.


The vindication contradiction

If you read this carefully, you may notice what I call (local to this post) “the vindication contradiction.” On the one hand, I critique my mom for feeling vindicated that I haven’t procured a new psychiatrist two days after my old one dumped me. But don’t I express vindication earlier on when I say “Ha!!” at the result of the Vanderbilt psychiatric evaluator saying I don’t need any particular help right now?

Here’s the difference.

What I am saying with my “Ha!!” is Isn’t it funny what a subjective thing diagnosis is? and Isn’t it nice that someone thinks I’m ok? I don’t happen to feel that any of the diagnoses presented here—that I’m in dire straits, that my case is too complex to handle, or that I’m fine at this moment—are essentially right or wrong. They are subjective—clearly.

It gives me no joy psychologically that one or more of my diagnosticians is “wrong”—I am actually not thinking of any of them as being right or wrong..I am not thinking in those terms at all. Even when I say I think my mom’s views are “unrealistic,” I am not feeling vindicated (like I won something or proved something or that I’m justified).

To me this is not a fight—nor a football match.

My assumption is that we’re all on the same side.