My Bipolar Story: Careers, Blazing Successes, Burnouts, Disabilities, & Leeching off Society
This is the third installment in a series. You can read the first two here:
In my first prelude, Kareena left a comment asking if I could still work while taking medication.
Mick Mulvaney is probably, at this moment, running around screaming that in order to save the United States’ economy from collapsing and our very moral fiber as a nation from unravelling, anyone on SSI or SSDI must immediately demonstrate just how sickly they are. Because, you know, ‘those people’ have been mooching for far too long and they don’t look sickly enough to him.
I’ve been debating how and when I should address the topic of having a severe mental illness, being or not being in the ‘traditional’ workplace, and what that means for your self-esteem, how others see you, and what, exactly you contribute to society.
It’s a topic that weighs heavily on my mind and causes me severe anxiety on nearly a daily basis. It keeps me up at night. It’s one of the many reasons I take Valium and CBD.
I come from a upper middle class, technocrat, Bay Area, neoliberal, make-your-own-way-in-life, high-achieving family. Both of my parents, though now retired
And I’ll be real here. I’m 43. My dad retired at the withered old age of 62 and my mom retired in her late fifties. They are not the ancient, stooped, old greeters you see at Walmart and silently hope ‘Please let them being doing this for fun and not because they need the money.
had worked in tech, in the Silicon Valley, since the 1970’s. It had been expected, no it had been my birthright, that I would be a high-achieving, 80-hours-a-week-working, highly-driven tech worker.
And I was.
Until I no longer could and had to do something else with my life.
The story goes something like this.
I went to mostly to public schools with brief stints in private schools. I was in GATE
If you live in CA, you know what this is. The acronym stands for Gifted and Talented Education. It’s like Special Ed for people with ‘high IQs’, which doesn’t mean shit. They just give you more challenging work in the hopes you won’t become bored with regular school and turn feral or something.
throughout my school career. I never tried very hard, but I got good enough grades. Good enough to get into UC Davis as a biology major. Then I switched to linguistics. Why? Because it seemed like a good idea at the time.
Thems was difficult times. I hated school and school hated me. It was really, really boring. I didn’t have large groups of friends. I had tumultuous relationships with people. There were incidents and accidents. There were hints and allegations. I can’t think of anything I went through that wasn’t typical adolescent bullshit. My behavior was atypical, but I imagine the experiences were otherwise very ‘My So Called Life’.
Life was so weird. And hard. I was having mood problems, anxiety issues, sleep issues, health issues, and eating issues since I was, according to Moms, a toddler.
Her only comment on all of it? ‘You were always a weird kid.’
Mom wins the prize for ‘Explicator of the Year!’ Go Moms.
So yeah. I struggled bigly. Sorry I can’t give you more details. I don’t remember much of my childhood. I remember some events. I have photos, but I have a feeling any memories I have are just reconstructions or are stories people told me about those photos. But that would be par for the course. That’s what most of my memory is like. Other people have to fill in the blanks because much of it is like a big, black void. I can quote passages from books, or TV shows or whatnot, but I can’t remember chunks of time. I’ve gone through 7 ‘therapists’. They can’t explain it either. I vote for what Dr. Google says. Bipolar Amnesia. So that makes my guess as good as theirs I suppose. Or maybe everyone’s memory is like that. Is yours? Cool. That makes me feel better.
Ok, so I got my DD 214 from college and started working doing copy in the O.C. Why? I dunno. It seemed like a good idea at the time.
‘It seemed like a good idea at the time.’
I think every person with Bipolar who has experienced a mania should probably have that tattooed somewhere prominently on their body, as a reminder. Like how people get lyrics from ‘Transatlanticism’ tattooed on their forearms, only this one, you won’t regret when you are old.
Back to the O.C.
Copywriting sucks. Ask Augusten Burroughs. Especially the kind I was doing at the time. I was working on a print catalog for a company that sold mobile phones. If you are younger than your late 30s, you have no clue what I am talking about. Back in the 1990’s, there were companies that sold mobile phones from a bunch of different manufacturers and sold their own phone service that was not AT&T, etc. I know, freaky.
So all I was writing over and over again was some variant of this:
‘It’s a candy bar-sized phone so slim and portable, it can fit in your pocket!’
Candy in your pocket! Sexy stuff indeed, my friends.
The agency I was working with needed a website. So I said ‘Sure, I can do that.’ I had no clue how to do that. Me, being Ms. Determined, figured it out.
Really, it’s just that I am dumb. When I was in first grade I was invited to a friend’s apartment complex to go swimming. I did not know how to swim. I immediately jumped in the pool. I, obviously, immediately started to sink. A panicked adult pulled me out of the water.
And more people asked me to design and build them websites. Then all of a sudden, I had a business going. And I was making money. And moved to Laguna Beach. And lots of things happened. Many of them not so good. But during this period, there was a lot of mania fueled by a lot of work, followed by a lot of lows with no work. That’s how I managed to sustain myself through much of my career. Manias can make you a lot of money, honey. Then you live off that money when you can’t manage to get off the couch. Rinse. Repeat. It is truly an exhausting cycle. And frankly, it’s damaging in a whole host of ways.
But didn’t you have any family or friends, you ask? Yes, I did. I had parents. And a sister. But at some point after college, we had a falling out, and either I didn’t care or they didn’t care to try to fall back in. I wouldn’t talk to them again for at least 13 years I think. Family will be another post.
I also happened to have been married to a really abusive dude who didn’t want to work, but saw me as a meal ticket. So, he did his best to fuel to manias, and then berated me when I hit the depressions. He screamed at me over and over again ‘You have manic-depression.’ Ok, when you don’t know what that is, and you are suffering from it, what do you do with that information exactly?
You may be asking yourself, ‘If you had someone who kept telling you that you were crazy, why didn’t YOU take the initiative to get yourself some help?’
When you are the one who is mentally ill, especially when it is a mood disorder, it isn’t always so clear that you need help. I thought I was fine and the ex was just being an asshole. I had no idea my behavior or thoughts weren’t normal.
Yeah, you read that right.
I thought I was perfectly normal, perfectly healthy.
My current husband (I love you!!), who has intrusive thoughts-type OCD, knew that something was wrong when he was a youngster. He wanted help, and got it as soon as he could. If you don’t have some form of bipolar or schizophrenia, you are never going to understand the statement, ‘My thoughts and behavior seem normal to me.’ But there it is. Others with a mood disorder might have known. As I always say, YMMV.
My first experience with getting help was at 16, which may have tainted getting help later in life.
My parents sent me to a therapist once when I was 16. All I remember was talking to her and becoming very agitated and upset. At the end of the session she said, ‘I think the next step is for you to come back with both of your parents. We need to talk together.’ I had no clue what the fuck that meant. As soon as I got home, my mother got in my face and screamed, ‘You’re never going back to that quack again. She called me. We’re not going in with you. There is no way someone is going to blame your problems on me.’ I never saw another mental health professional until I was 35 years old.
You read that right. The first time at 16. And it wasn’t again until I was 35 years old. The years in between were fucking rough, yo. Every psychiatrist and therapist I’ve ever seen since is astounded, based on my past and present, that I am existing at 43. I must have incredible genes. Either that, or Rick James is right, and cocaine is one hell of a drug, man.
Ok, back to the salt mines.
I built up a web design business for myself. It was a nexus of skill, luck, and perfect timing. I happen to hit the dot-com boom. And when the boom was starting to bust, I had accumulated enough skills to be called more than just a web designer, I was a user experience designer. So I moved home, back up to the Bay Area, and worked for startups, and Oracle, and Yahoo!, oh my. Then I moved to L.A. and worked for another startup and Yahoo! again. The entire time I was still in the pattern of going up and down.
At this point you are probably asking yourself, ‘If she was going up and down, how the hell did she hold down any job?’
That is a question I ask myself a lot. It is amazing the behavior people accept, ignore, and sometimes encourage, when they are getting something they want in return.
Perhaps think of it in the way I think that maybe Melania is able to stay in a marriage with the Donald.
Most people would think, ‘How in the fuck could she be married to that…that…person?’ The things he says? The things he does? He seems callous, cruel, crude, and uncaring? Maybe for her, the comforts of living in that building in Manhattan, the power, the prestige, and the money, allow her to overlook the things that I, personally, could never overlook. Or, maybe I am full of shit and she loves him for who he is as a person as much as I love my husband.
It was the same with my employers.
I’m not saying I was the most brilliant designer to ever walk the planet. But when I was good and at the top or even middle of my game, I was most excellent. All of my bosses loved me. So when I got down, other people either picked up my slack, or made excuses for me.
‘You just need a vacation.’
‘Here take some comp days.’
‘That last project was really rough.’
‘That’s just her being her.’
MmmHmm.
Up to this point, I hadn’t seen any mental health professional, nor had I ever taken any psych med. I never thought I had a problem. I was probably doing what I guess they refer to as self-medicating. You know, the usual. Drinking, smoking, snorting.
I was following the Alice in Wonderland principle. If you feel too high, do this to bring you down. If you feel too low, do this to bring you back up. Kids, I don’t recommend this AT ALL, but it was all I knew at the time. I was alone, except for an abusive ‘husband’. I had no family. I had no support. I was trying my best to cope. When I look back, I really wish I had met a psychiatrist earlier.
By this time, the first marriage had been over for a very long time, but I finally decided to file the official paperwork. No need to talk messy details. You didn’t come here to read about relationship issues. The things related to work and mental health that resulted from it were that I had to move from L.A., find a new job and a new place to roost.
That place was Austin.
So I started working in the same industry, only as a consultant. The move into consulting was the biggest mistake of my life. This is not to insult my former employer, frog. Ribbit! I did some of the best work of my career. I have patents. I got to work with many interesting companies, people, and technologies.
Don’t be too awed by the patents, clients, technologies, etc. The other companies I worked for were just as innovative. Consulting just has better ummm…propaganda.
I don’t recommend working in consulting as an unmedicated person with a severe case of undiagnosed and unmanaged bipolar. It’s even worse than working in a startup. Why, you may ask?
One word:
Instability.
I’ve found, since gaining some semblance of stability in my life, that attempting to manage stress and stability are two things not medication-related that I did to help myself feel better.
Working for a design agency for me is this:
*Intense pressure
*Projects that range from 6 weeks to 6 months
*Constant need to learn about new industries
*Need to stay on top of every new and emerging trend and every new technology
*Travel at home and abroad at least half your life
*Work nights and weekends
*I was always ‘on’. Expected to answer client communications whenever, wherever. Just like I was a fucking W Hotel concierge.
*A lot of face time standing up in front of executives to present designs and rationalize things that sometimes defy rationalization. But it was my job to sell those things.
*Being innovative at all times. These people are paying my company $250/hour for my time. When people are paying that kind of money, there are more than high expectations. You feel me?
*Entertain clients. Dinners, drinks, social engagements, etc. Same deal as a lawyer, politician, etc.
That is probably enough to make people without a mental illness start losing their hair spontaneously. So imagine doing that for years and years on end. While being ill. While not having a diagnosis. While not having meds.
Other things were going on in my life as well. New town. New people. I was paying alimony to an ex who was stalking me, who somehow managed to close a joint account alone and liquidate tens of thousands of dollars from it even though it was awarded to me in the divorce (Thanks, Citibank!), who was extorting money from me monthly (He would threaten me constantly with various acts of violence if I didn’t give him ‘$500 for this bill or that bill.’). I met a guy, who would later become my current husband (I love you!!), who had a drinking problem.
None of these things made a positive contribution to my mental state.
Nevertheless, she persisted.
After I left this job, I started freelancing. It didn’t work out much better for my mental state. It was still doing the same work, just not getting full time benefits for it.
I’ll stop at this point and describe how I first sought the help of a psychiatrist, how my illness has manifested and progressed over the years, and how that has impacted work.
My current, and I hope future and only, husband was the one who got me help. He didn’t badger me. He didn’t call me names. He just quietly and doggedly suggested that maybe I wanted to visit Dr. S. He told me he had something called OCD, took these pills that really helped, and that he had seen Dr. S when he was a student in college.
Dr. S wasn’t judgmental, he said. He was a nice guy. Maybe he could help.
I think my first reaction was probably ‘No fucking way. I don’t think I have a problem. My problem is that you are a problem.’ Or something to that effect.
This is the story of how I finally met Dr. S.
I had been manic for awhile. I’ll spare you the weird details, but the highlights were that I took off to Germany for 1.5 months, two months before I was supposed to get married. In a big wedding ceremony. With a dress, people, food, and everything. The trip was for work, so I saw no problems with this. In hindsight, that was intensely…weird. Many other psychotic things happened, some of which I remember, some I don’t. At the time, it was confusing and strange and everything felt sideways.
Shortly after the wedding there was another trip to Canada. I remember sitting in the airport, hysterically crying. I called my newly-minted husband. All I remember saying is ‘I can’t get on this plane.’ Why? I don’t know. All I remember is not being able to physically use my legs to stand. My ass was glued to that horrible IAH carpet at the Air Canada terminal. People were staring at me. A couple of them with pity. Most looked uncomfortable. Some looked downright angry. Maybe I was incoherent.
Not a single person asked if I needed help. Like I always say, our motto isn’t ‘Land of the free, home of the brave,’ or ‘Give me your tired, your poor, your huddled masses yearning to breathe free,’ it’s ‘I’ve got mine, so go fuck yourself!’
In hindsight, it was probably the low after the high. So I went to see Dr. S after that. We chatted for probably and hour and a half, he gave me some scripts, and a receipt. Printed on the receipt was a diagnostic code. He never told me what I had. We never had a discussion about my diagnosis. He told me to get the scripts filled, call him if I had any side effects that made me uncomfortable, call him if I wasn’t feeling better soon, and to take time off of work. He also gave me the names of some therapists and told me to choose one. Then I think he had a discussion with my husband. That was it.
I’m thankful that was the extent of it. If he had said anything more, I would have never gone back. Ever. Dr. S, though he seems sort of socially awkward, has a weird kind of ESP about people. It makes him a most excellent psychiatrist. When you go in and you can’t really articulate what is wrong, he somehow just gets it. I really don’t know how he does it. He’s some kind of wizard. I’m pretty sure he went to Hogwart’s in addition to medical school.
So from age 35 through age 43, I, for the most part, steadily held down pretty lucrative jobs. The jobs between ages 25 through 35 were pretty lucrative, too. I say this not because I want to humblebrag
I HATE that weird American ‘So what do you do to bring in an income?’ question.
but because I want the youngsters to know that just because a doctor tells you that you have bipolar or schizophrenia, that doesn’t mean you are condemned to walk among the damned.
You can be a designer, doctor, teacher, engineer, Hamburglar, parent, cosplayer or whatever you wanna be.
The unfortunate part for me is that I started to experience a steady decline.
PAY ATTENTION: Just because I experienced a decline does not mean you will eventually experience a decline. I have no idea if that happens, or has happened, to anyone else. Maybe I am the only one it happened to. YMMV.
I have my theories, but they are just theories. They haven’t been subject to rigorous clinical controls. My theory is this. I can no longer handle stress. Stress outside of a very narrow range sends me immediately into hypomania, which if not removed posthaste, results in mania. The older I get, the worse it gets. The intensity of the mood states have been slowly getting worse since I’d say about age 33. It sucks. I think it’s because I went unmedicated so long and worked under such extremely stressful environments. There is only so much a brain and a body can handle. At least, my physiology had reached its limit.
After being diagnosed and offered meds at 35, I worked for 8 years, 40–60+ hours a week, along with 20%-50% travel. I didn’t stay on meds consistently. I went on and off them. Sometimes because people tried to convince me I didn’t need them, other times because I tried to convince myself I wasn’t mentally ill. I tried almost everything. I tried every medication and med combo my psychiatrist offered. I tried herbs. I tried supplements. I tried yoga, cardio, weights, and HIIT. I tried sleep hygiene, every sleeping med known to humankind, valerian, kava kava, and melatonin. I tried high carb, low carb, high fat, low fat, gluten free, vegan, vegetarian, and cleanses of various types. I tried meditation, massage, and acupuncture. I tried more friends, fewer friends, and just a couple of close friends. I went through seven different therapists, each with a different ‘type’ of therapy they practiced. I even tried the ‘Fuck it. I’m going nekkid because nothing is working’ method and did nothing at all.
Some things worked well, but the side effects were incompatible with a job like a had. Some things made everything horribly, terribly worse. And some things had no fucking impact at all.
The worst part was with each failure of a ‘treatment’ that someone swore to me that would enable me to maintain the ‘60–80 hours a week, high pressure, high stress, workaholic, always on, little sleep, be innovative, no life, dedicated to work’ lifestyle, I felt more and more like a fucking loser.
You know why? Because I told myself if I couldn’t do that, then society had no use for me.
Yup. You heard that. If I can’t do what I thought (and was told) everyone else in the U.S. is doing every day, despite the fact that I have a severe mental illness, I am a fucking loser, so I might as well kill myself. Isn’t neoliberalism grand?
But really…
How can you work until 2am with your colleagues when you are supposed to take your 800mg dose of Seroquel and your 30mg dose of Restoril at 10pm and it puts you to sleep right away and for 12 hours, but you are supposed to be back in the office at 9am?
You can’t.
How do you get 12 hours of sleep when you need to work 15+ hours a day to finish a project or you need to fly a red-eye in order to get to a client meeting?
You can’t.
Beyond the limitations that medications I took imposed, the unbearable stress just kept causing mood states to explode, whether I was taking meds or not. I had private short term and long term disability insurance, which I used. The covers I used could vary.
One time was just that I had gotten some severe upper respiratory illness from which I had to recover for two months. Then when I came back, I had to tell everyone I couldn’t travel for awhile. Everyone knew that was a lie. People aren’t that dense, and I’m not that great of a liar. HR knew because they saw the paperwork from my psychiatrist. And it’s not like HR is in the business of keeping state secrets. I’m not accusing them of trying to spread gossip, but they are humans, and humans talk to other humans. So, if you ever find yourself in a similar situation, just expect that everyone will always know everything.
Another time I was just mysteriously ‘very ill’ for two and a half weeks but was actually in a mental hospital. These situations are tough. HR knows everything. They know you are in a mental hospital because they process the insurance paperwork. They know exactly what’s up. But legally, they cannot tell your boss, nor can they tell anyone else. They can tell your boss you are on ‘medical leave’, but they can’t really say, ‘She is in a mental hospital because she had a psychotic depressive episode. She has bipolar I disorder.’ That is a massive ADA violation, as well as an EEOC violation, especially if boss in question decides to fire my ass. It makes it tough to return to work. Your boss and coworkers are naturally curious. If you can’t or won’t give them details, they start to distrust you and think you were just malingering. And everything starts to go downhill from there. No matter how well you perform. It sucks.
So…
The starts and stops. The private disability. The episodes. The hospitals. The meds. Things were not getting better for me. They were getting worse.
The last straw was 2016. I took a job in Manhattan, because I was probably hypomanic and borderline becoming manic, that I should have never taken. Thus the moving to NOLA for no good reason whatsoever.
I’ll spare you all the details, but it did not end well. I did not have Dr. S. I saw a few people in Manhattan and NOLA who, for whatever reason, chose to take the massive 8 years worth of records from Dr. S and declare that because they had seen me for 10 minutes, they had more insight into my condition than he did, so could better determine what treatments could work best. Out of the people I saw, the best one was a psychiatric nurse in the diamond-encrusted Upper West Side. When I say ‘best’, I mean ‘most full of him/herself.’
He was like 8,000 years old and had no interest in listening to me. He also charged me something like $350 for 30 minutes. My psychiatrist, Dr. S., charges me $150, and usually goes over the 30 minutes with his patients. I don’t know how he feeds his family. By the way, Austin ain’t a cheap place to live, either. Check it out. The sidebar was, this crusty nugget didn’t listen to me, cut me off and proclaimed, ‘Lithium is the GOLD STANDARD in treatment for all bipolar. It is all-natural…’ I was already hypo and heading into manic at that point. And easy to piss off. So I cut him off and yelled, ‘Do you think I’m stupid? Lithium is a salt. It’s on the fucking period table. Of course it’s natural. So is tobacco.’ Or something to that effect. I don’t take Lithium. Ever. But we can discuss that in either my love letter to Dr. S, or my post about drugs. Sorry for the sideways bar. Sometimes I say funny things when I am manic.
In my opinion, unless you have relatives there, want to do a ‘Leaving Las Vegas: The Dirty South Edition’, play the blues, or are in a brass band, there is no good reason to voluntarily move to NOLA. I don’t mean to offend, the city is wonderful and has much to commend, but only a truly crazypants person who has ZERO roots in the Deep South would think that an awesome idea.
While my tolerant and understanding husband and I were there, we made an awful decision.
Together we decided that I should apply for SSDI.
I went from making 140k a year to applying for, and receiving, what average people believe is welfare. I can go ahead and just scream it out for you right now:
Leech! Fraud! Welfare Queen! Daytime TV Watcher! Cheetos Eater! System Abuser! You take my hard earned taxes! Entitlement Stealer! Illness Faker! You sit in a recliner all day and watch Family Feud!
Did I miss any? Feel free to add more in the comments.
Despite what Mick Mulvaney and the Trump administration want you to believe, 99% of people on SSDI are none of those things. Here is a brief description of the program.
SSDI is the acronym for Social Security Disability Insurance. If you pull a paycheck, part of your paycheck goes into a bucket to fund this program. This may piss you off, but if you ever break your back, get cancer, lupus, or one or both of your eyeballs falls out, you might be happy this exists. You will find yourself eligible to apply for it, based upon how many work credits you have accumulated in your lifetime.
It’s not unlike the private disability insurance you may have through the Snoopy company, except this is one of those big, bad ‘entitlements’ the GOP seems to hate so much, but never explains WHY they hate so much. Except that it costs money. Trips to Mar-a-Lago, wig maintenance, and spray tan cost a shit-ton of money too, but I don’t hear a single Republican bitching about those.
You may have glossed over the work credits thing. That’s pretty important. You know those paper statements the SSA used to send out telling you how much your social security check will be when you retire? That’s all based on your work credits. How many years you have worked, and at what salary for all those years.
If you were a boss bitch, they determine you have a severe illness, and have a lot of work credits, you qualify for SSDI. If you don’t have enough work credits because you are young or haven’t been in the workforce and have never made much money, but are still severely ill, you qualify for something called SSI (Supplemental Security Income). SSI is a very small amount of money for those who are very ill and are the poorest of the poor. To deny them a pittance every month is beyond cruel.
So, how do you get this SSDI and how do they know you are sick in the first place? That’s what Mulvaney is ranting about. People are under the impression you walk into your local Social Security office and tell the kindly person in the window, ‘I have an owie’, and then they start sending you fat stacks of cash every month.
I mean really. Do you honestly think that’s how it works? Is it even that easy to get a fucking license from the DMV???
This is an interesting history of disability insurance and policy. According to him, the philosophy of the people who started crafting the policy in 1936 was something along these lines:
‘a disability is an impairment of mind or body which continuously renders it impossible for the disabled person to follow any substantial gainful occupation and is likely to last for the rest of a person’s life’
It’s not totally dissimilar today, but they do take into account what your previous career was, what skills you have, and what skills they think you might be able to acquire.
Those are pretty strict criteria. And they are not fucking joking. 2/3 of all people who apply are summarily rejected. You can appeal, but almost all of those are rejected, too. Most people are not on disability for life. And they can and do come back and evaluate you if they expect your condition to improve. Guess what? They expect most people to improve.
Why? Many people apply for disability as soon as they get into an accident at work. It makes sense. You slip and fall on the factory floor and hurt your back, so you can’t work. No work = no money to support your household. You aren’t fired from your job, YET, so you can’t collect unemployment. So you apply for disability. Well, I assume, unless you become a permanent pretzel, in time, your back will heal and you will be able to return to work.
But, there are other circumstances that are sort of grey areas.
Let’s say you work in the deli department at H-E-B and all of your fingers got cut off in a meat slicer. That would be horribly traumatizing, and also, how would you scratch yourself ever again!?!
Maybe this guy, after physical therapy, gets super cool X-Men style Logan hands and now he can slice meat without the aid of the meat slicer, so he is in high demand and can get an even better job than before working at a swanky place like Central Market or some Artisanal Meat Store. Or maybe he never works again because he can no longer use his hands. That is what they evaluate. Everyone is different.
Oh, you didn’t know that? Yeah, here’s some reality coming at you. Not everyone is up to your high standards. Sorry about that. I guess YOU can teach yourself to slice meat with your feet in 24 hours and get your old job back, but this dude lost all his fingers and can’t work anymore. Aren’t you a special snowflake?
On the whole, 99% of Americans really, really, really want jobs.
You want to know why?
There is no shame in this country greater than being unemployed except for one.
And that shame is being the recipient of a government service.
It’s quite weird when you think about it. We all contribute. If we really, truly were a ‘God-fearing nation’, then we would follow the actual teachings of Jesus and the rich would give bounteously to the poor, sick, and needy, as is commanded in the fucking Bible. I don’t believe in religion as a concept, but there is nothing worse than being constantly subjected to hypocrites in every form of media.
Back to meeeeee!
I was approved the first time around, in relatively short order. It can take years for someone to be approved. Before your cage gets rattled, it wasn’t because I’m some rich, entitled, white lady.
When you apply, they ask you many questions. Most are along the lines of how much you can lift, and if you can bend, shake, rattle, and roll. They ask for all the names of your doctors, hospitals, pharmacies, employers, and every single medical record that is pertinent to your disability. I had about 9 years worth of pharmacy records, psychiatrist records, hospital records, therapist records, private disability records…you get the picture.
But most people who apply have never even visited a doctor. They become severely ill or get injured on the job and become unable to work. Most don’t have long medical histories like I do. I’m not sure why. I suspect it might be because they can’t afford to see a doctor regularly. They apply for disability first. So, the SSA has to send them to one of their evaluators in order to determine their level of disability before making a determination. There is a backlog of at least a million people.
My case is pretty straightforward. It’s been documented that I’ve been trying for about 9 years to stay employed, but I cannot, and I have the records to show that it’s been nothing but manias, depressions, hospitalizations, disabilities, extended leaves from work, and lost jobs. So at this point, I am not very employable because I can’t be a reliable employee.
I know it’s been a long read. It’s been a long journey through work. I’ll be 44 in August and I’m fucking exhausted.
I’m guessing so many of you are thinking some variant of:
*I am or have a friend/relative/seen someone with Down’s Syndrome or on the Autism Spectrum and they can hold down a job, so why can’t you?
*I am or have a friend/relative/seen someone with bipolar/schizophrenia/major depressive disorder/OCD/anxiety/other mental health diagnosis and they can hold down a job, so why can’t you?
*I am or have a friend/relative/seen someone with cancer/diabetes/lupus/acid reflux/heart disease/morbid obesity and they can hold down a job, so why can’t you?
To which I respond:
<asshole>I have this, this, this, and this. If you don’t, what is your life excuse? Do you have any accomplishments like that to show for your life? Any major triumphs you’ve made while SICK AS FUCK? Have you ever made anything they’ve sold in Best Buy or Amazon? You ever just been casually walking down the street and laughed because you saw someone using something YOU designed? Ever designed anything that’s won a ‘Best in Show’ award at CTIA?</asshole>
The satirical asshole rant above was to make a point. It is so easy to sit on your sofa and make proclamations about what you think someone ‘should’ and ‘should not’ be able to do. I honestly wish that you could borrow my brain and body for just a day. I promise within two hours you would be begging to give it back.
And yes, I’ve seen people with Down’s Syndrome working. My mother worked once for a couple of months at PRIDE Industries. They work how they are able with very liberal accommodations. But the money they get doesn’t pay their bills. The job functions as a way to give them a sense of belonging in the world. It’s the same with this guy we know, Roger.
You see, Roger has schizophrenia. Every time we see him, he says, at least 5–7 times, that he is ‘Crazier’n hell.’ He also says many other things. Some which hang together, and some which don’t. He has a job. He is a ‘security guard.’ He walks around an empty building at night talking to himself. Roger gets paid something. He also gets Social Security and lives in a group home. He turns his money over to the group home manager, who in turn, takes care of him. So yeah, he has a ‘job’, but not in the same way or for the same reasons that YOU have a job. It gives him a sense of structure and a sense of meaning in his life.
This is the most important part of the entire post to me, which is how I feel about being on SSDI. I feel like a loser. I feel like an asshole. I feel like shit. I feel like I should just go ahead and kill myself because society no longer has any use for me. My monetary unit of measurement has been reduced to a big fat zero.
My husband says that I’ve let society’s neoliberal dogma brainwash me into thinking that way. It’s hard not to. My entire life has been built around feeling that my main contribution to the world has been through my job and what I have designed for my employers and my clients. How many patents and awards and articles and accolades. Even now that I am off the grid, I STILL get recruiters calling me. I have mixed feelings about it. A large part of me wants to say ‘Fuck SSDI, I can jump back in there!’ When I tell my husband about it he reminds me about my limitations.
Limitations.
It’s true. I live a life with limitations. We all do. I always have. The difference is that I just cop to them now. I’ve created a safe space so that I don’t constantly go spiraling out of control. If you’ve been reading, you see how many meds I take. I need 10mg of Valium to go to the grocery store. And if it is more crowded than usual, my CBD vape. And if things have been really sideways in life and it’s time for a med adjustment again because it is summer, I may get the dissociative fugue aka ‘I ran away from home and husband found me somewhere, and wait, are these my hands?’ Yeah, there is some kind of funky pea souper covering my brain, I know. I’ll donate it to science when I die and they can just label it ‘Abby Normal’.
But I still contribute. I still function as I am able. As a person, I don’t feel worthless. As a person, I feel like I have a place at the table. I don’t sit in a recliner eating Cheetos and watching Family Feud. I would go crazy. I write. I still design things. I make digital art. I try to take care of my husband, our pets, our family and our friends. I experiment in the kitchen. I take photos. I Medium. I ‘Gram. I try to take care of the day-to-day things. I try to take care of myself. I exercise. I help others. I just can’t do the regular 9–8 job anymore because I can’t tolerate the stress or the instability without it sending me into an episode, even when I’m on a shitload of drugs.
So I would like to extend a middle finger to Trump and his supporters for trying to make me feel like a bag full of unwanted kittens that were tossed from the back of a F-350 onto the side of the 35. I’m not human garbage. I’m a person. I’ve contributed plenty in dollars and cents to the economy over my 43 years. I’m not ‘entitled’. So, what that I’ve become unable to hold down a 9–6 job? I have a severe illness that has been documented inside and out. I’ve been there when my community needed me, and now I need them.
My humanity isn’t going to be reduced to a unit of monetary value. You can take YOUR entitled neoliberal bullshit and shove it.
Next up: My love letter to Dr S, and an exploration of why I can’t seem to find love on the therapist’s couch.
