Blog for Mental Health 2014 Project, or, yes, I made it to the kitchen today.

bfmh14-copy-e1388959797718“I pledge my commitment to the Blog for Mental Health 2014 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.” 

There are pretty much 6 people who read this blog. Once you realize how long this post is, that may start to make sense.

When I started it, I just needed a place to write. I really needed a space, but I didn’t really need an audience. I get a little jump when someone comments, or I get an email saying that someone follows this, but this was primarily a little place for me, and I had no fancy paper notebooks to work with, and my handwriting sucks. Really, it does.

I wanted to write this post, as part of the Blog for Mental Health 2014 Project, because I think that while it is great that all sort of celebrities are announcing their mental health status, I don’t know that that really helps people on a day to day,  oh god how am I going to get all the way to the kitchen, I’m so tired my teeth hurt, basis. In my experience, the only thing that really does that, is knowing people who have lived through that, made it to the kitchen and lived to tell about it. Today, I made it to the kitchen. You can do this.

I was diagnosed with Bipolar II in 1992, after a not very successful trial of anti-depressants made it fairly obvious that I did not have unipolar depression. I spent 8 weeks in hospital getting used to lithium and also getting used to the fact that there was a name for the thing that caused me to lose my marbles on a fairly regular basis, and that that name was not just “tired” or “energetic”.

I spent my 20 year “crazy” anniversary in the hospital too. I’ve been hospitalized seven times in 20 years, which is pretty freaking low, given how things have gone. I have had good treatment, mediocre treatment, and downright horrible treatment. I had the best possible psychiatrist, but then she retired last year. I have taken at least one of almost every class of medication that has ever been even hinted at for BP, including one that is supposed to be for Parkinson’s Disease (that one, for the time being, is working).

I fought an uphill battle with self-harm. Mostly, I won. There are occasional skirmishes. I don’t beat myself over the head with them anymore.

I have significant kidney damage from medication, and it probably won’t get any better than this. I know where every public washroom in the entire city is located, and if I don’t know, I can find one. It is my superpower.

I wrote cranky blog posts about things I found completely unfair about living with mental illness, days when I really wished I could shuffle off this mortal coil without disturbing anyone, and things that are awesome (like peer support and friends).

In and between all of that, I did the following:

  • Got bachelors degree in physical anthropology and human evolution
  • Got college diploma in Early Childhood Education
  • Got bachelor of Education degree
  • Taught elementary school for 8 years
  • Got master of Educational Technology degree
  • Got married
  • Worked for an educational company designing online courses
  • Gave lectures to mental health professionals about lived experience
  • Got unemployed
  • Made really good friends in the physical world and online
  • Learned cross stitch
  • Knit a whole bunch of socks

(Resume available on request. I really need a job, just in case you were wondering. I’m not really trying to advertise.)

Being bipolar is not all of what I am, but it is a huge part of how I became this person. This has been with me my whole life, and it has shaped every decision I have made, and influenced all of my choices. I learned (slowly, and with great reluctance) how to be self-reflective. I learned compassion. That was supposed to apply to me too, but I have not quite got the hang of that yet. Further updates as events warrant. I learned that not only do I have a voice, but I really want to use it. I learned how to be kind. Again, not so much to myself, but I have to leave some startling growth spurts for my 40’s, right?

I also learned how incredibly cruel ignorance is, and how ignorant people really are. I learned what it is like to be marginalized and humiliated for something that is beyond your control. I learned how privileged I am to be a white, well-educated woman, from the right kind of family, when I interact with the mental health system. I learned how dangerous it is to be part of a minority against whom it is still socially acceptable to discriminate. I learned that stigma is a Human Resources issue, and discrimination is a Legal Department issue. I learned that fighting stigma is probably a good thing, but that fighting discrimination and harassment is more important. I learned that people change their behaviour when they have to, and not because you have a good argument.

Other Things I learned:

  • The whole “baby steps” thing is infuriating, but sometimes it actually works.
  • If you can’t get out of bed, put one foot on the floor. Then, if you drag it back under the covers, at least you can say you accomplished something.
  • Practice forgiveness, not in a religious way, but in a “I can let go of this thing I am beating myself over the head with today” way. It is liberating
  • Accept help. No one is so awful that they don’t deserve help. There is no way you are that undeserving, no one is. Humans are worthy, just because.
  • One of my favourite quotes is from Jenny Lawson (the Bloggess, read it. No, really read this blog, and also read Hyperbole and a Half). She says depression lies, and she is right.

Things I like:

  • online virtual worlds
  • Science fiction
  • DBT (Dialectical Behaviour Therapy)
  • coffee (not the best thing for someone with an anxiety disorder, but there’s decaf, and that doesn’t suck as much as you would think)
  • Twitter
  • Politics
  • My cats

Things I know now:

  • I’m a pretty decent person
  • I can be useful
  • Panic can only last so long
  • I am 100% successful at not dying so far

If you made it this far in the post, I am truly impressed, and a little bit grateful (ok, a lot grateful). This is not something that people can do alone, and having someone read what you write is both scary and empowering. The Blog for Mental Health 2014 Project is incredibly important in that respect, and I hope that you go and read a whole bunch of stuff that people have written, and scare and empower them.

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Oh hey stigma, wasn’t expecting to see you there.

You know, I’m pretty lucky. I’ve surrounded myself with people who get me, more or less, and people that have learned from being around me. I have a decent little support network of friends and family who treat me like a human being, and who see me as more than the bipolar girl. In some ways, I’m isolated by their support from the worst of the stigma, and the worst of the discrimination that comes with being mentally ill.

I get it when I apply to jobs, and my spotty resume won’t get me in the door, and I get it in doctors’ offices when their whole tone changes once they see my list of meds. I once went in for a breast lump, and the doctor was all sympathetic and calming. He spoke quietly to me, and said we would figure out what was going on, and that even in the worst case scenario there was a lot that could be done, so don’t panic. Then he saw my meds. Suddenly he changed his tune. I was probably overreacting, you know because crazy people feel breast lumps differently (apparently). He made me feel like I was wasting his time, and I had probably made the whole thing worse by – and I quote – poking at it too much. Tell me that any woman who finds a lump in her breast isn’t going to poke away at that sucker? Turns out it was a blocked duct, but I was humiliated and angered by his behaviour toward me.

So what was the point of this? Oh, right.

I went to a business meeting today. It was a little stressful, because there is scope creep already in the project, and we haven’t even really started yet. The project, which was small and manageable, has been taken over by people with agendas of their own, and, well, that is always a little stressful. Nothing I can’t cope with, to be fair.

So we were discussing the nature of the business, and this is the conversation that happened:

1: So I’d hate to have a bipolar client, you know, and send them back to work, and have them not take their meds or something and then have them kill someone. You really have to have someone handle them that knows what they are doing.

2: Yeah, absolutely. I would hate to have a bipolar teacher working for me (laughs). That would be awful.

1: God, that would be a nightmare

2: For sure.

There are a couple of really obvious things wrong with this conversation. First, um, you do have a bipolar teacher working with you. That would be me. Second, we are not really very likely to run off and kill someone. Research, and common sense, say that bipolar people are a lot more likely to either be killed, or maybe, worst case scenario, kill themselves. So there’s that bit of brain-numbingly wrong thinking. The other thing, is that these people are talking about a program to educate professionals in dealing with people on disability, for physical and psychological reasons. I’m not really wild about them being in charge of the education of professionals if that is what they really think about people like me, and honestly, I wonder what else they are thinking.

I was going to say something, something non-identifying but clear, but thought better of it. The last thing I want to do is be out to people like this. I need the work, and I can imagine all the strange and insidious things that would inevitably lead to my not getting the contract, or that my role would gradually be phased out. I’ve been hidden about who I am at work before, and while it is a bit soul-crushing, I can do it. If it gets to be a pattern, I may end up opening my big mouth, but I’m going to have to prove my worth to them first, or get so far into the project that they can’t do it without me before I take a risk like that. Yeah, that’s what I’ll tell myself.

I forget how pervasive the stigma of mental illness is sometimes. I forget how dangerous it is. I forget that many mental health and disability specialists think we are all on the verge of forgetting one pill and then going on a rampage. I forget because my life is protected, and then it rears up and hits me in the face at a meeting of educated, privileged, socially responsible women.

To her credit, my boss, who has known me my whole life, looked like she was going to kill someone, but she bit her tongue, because she didn’t want to risk outing me. She wrote me a very wonderful email from the other side of the room (smartphones have some serious advantages). She was shocked, but after the original sting was gone, I realized I actually wasn’t. This is much more representative of how people see individuals like me. I had just forgotten, safe in my little bubble of people who see me as I really am.

I have the choice to be hidden. I have the option of avoiding stigma at business functions because, these days, I can pass for a sane person. I can quickly suck back an anti-anxiety med and get through any stressful business meeting. I can put on grown-up woman clothes and hoist my laptop on my back, and go off and play normal person for as long as I need to. I’m very privileged that way these days. The meds are doing what they are supposed to, the therapy is working, and for the most part, I am just living my life.

There are a lot of people who can’t get away with what I get away with. There are people who can’t pull their act together right now, and can’t put on a happy face and go to a stupid meeting. Not because they are any different from me, but because they are at a different point in their recovery, or they are deep in a messy place, or a dark hole. I’ve been that person too. For them, the stigma, the misconceptions, the ignorance and the flat-out hatred and contempt, are pretty life threatening.

Being seen as an inherently violent person, or someone for whom dangerous crazy is just one pill below the surface, puts you at risk. People call the police. The police overreact. People get incarcerated, formed, and sometimes shot. It sounds like hyperbole, but once you have people in authority who assume you are a physical threat, anything can happen. In my city, there have been a string of mentally ill people shot to death by the police in the past few years, and most recently, a disturbed teen armed with a pen knife was reportedly shot 8 times, and then tasered, on a streetcar. In the same time period, a sane man, armed with a loaded gun was disarmed by the police, and lived to tell about it. The stigma surrounding the disturbed, the mentally ill, and the generally unhinged, is not something that just makes life a little more difficult.

So maybe I should have said something in the meeting. Maybe my fear of being outed, my fear of losing a contract, was cowardly. I’m not really sure. Maybe I let an opportunity to change someone’s mind slip past me, out of fear. Maybe the stigma actually prevented me from doing the right thing. Maybe those people, at that meeting, will continue to blindly wander about in their ignorance. Maybe one of them will fire a mentally ill person, on some trumped up charge. Maybe one of them will not invite a relative to a gathering, because there will be children there, and you can never know what those people will do. I don’t know.

All I know for sure, is that I was unprepared to deal with stigma in that meeting. I wasn’t expecting it. I had this false sense that people who work in human services know something. I was wrong. I should have expected it. I let down the team. It won’t happen again.

A Sappy Title Like: Looking for Meaning

I think all people wrestle, at some point, with the question “what does my life mean?”. I think we all look for meaning, for purpose, to give us some reason to get up in the morning. For whatever reason I am stuck on this question this morning (all right, I’ll be reasonable, it is definitely afternoon at this point).

I have been ill, or crazy, or disturbed for over 25 years. In that time I have been spectacularly successful at some things, like education, and spectacularly unsuccessful at others, like making a living. It is a real effort to keep struggling and fighting to get to the bottom rung of the ladder, financially and in terms of independence. I don’t have a career, that mark of “making it” that my family is so desperate for me to have. I am 40 and not off the family payroll. You can say it is not all about money, but let’s be realistic. Money is the way we measure ourselves, it is how we provide food, shelter, clothing and much of our entertainment. It is the reward our society gives for being successful in the working world.

I would like to have money. No, scratch that. I would like to earn money. I would like to be part of that world that supports themselves through work, through producing, through creating. I would like to be free of the influence of my funders – much as I love and respect them. I would like to feel that my work is valued, and in turn get value out of it. I selfishly want to take a vacation. I want to go somewhere nice and do fun things, maybe get some sun during a hellish February, or maybe see cathedrals in Cologne. I want to introduce my husband to the countries in Europe where my relatives live, and where I spent time as a child. But, this is impossible because I can’t make enough money to pay my rent, let alone afford airfare.

The travel thing is not the hill I want to die on, really. I think I can live a full life without seeing Havana. What it is is a symptom of the deprivation that chronic illness enforces, and particularly chronic mental illness. This inability to earn cuts me off from enjoying the things that my friends take for granted. Holidays, the symphony, conferences, dinners out, buying presents for milestone birthdays, updating my computer and paying my rent. Sure there are lots of low-cost things I can do. If I could get over my guilt at not working I would rock the staycation. The long and the short of it is though, that my illness keeps me impoverished and dependent, and this eats away at my search for meaning.

I don’t have choice, which is essential for feeling like you are in control of your life. Feeling like you can go in any direction you need to to fulfill your needs, wants and wishes is essential for feeling that your life has purpose. It means that you can act out on the choices that you and your brain make about how to live, what causes to support and the way in which your work can support your ideals and beliefs. You can choose to become an engineer and design tools to make other people’s lives more interesting, or that contribute to the economy of your region or country. Or maybe, being an engineer is enough in and of itself because it exercises your intellect in a way that makes you feel accomplished. Maybe it allows you to go home at night feeling like you have done something meaningful with your life.

I tried being a teacher for a while. This was a spectacular failure, for two reasons. First, I’m not really good at it. I don’t have the patience to shepherd 28 seven year olds through arithmetic. Oh, I provided a nurturing environment, and my kids felt cared for and important, which I am sure contributed to their development in a positive way, but in all honesty I can’t spell and I hate arithmetic. This tends to dampen your enthusiasm for teaching phonics and basic addition. I’m sure it showed. Second, I can’t handle the stress. Teaching children is possibly the most stressful job in the universe (a little over the top, but seriously ask a teacher and be prepared for a rant about being overworked and under appreciated). There is the whole issue of trying to manage a room full of children who have not yet learned to manage their emotions and behaviours, and then there are the administrative expectations of schools, boards, and your elected overlords. That doesn’t even factor in the parents. I was attacked by a parent once for calling children’s aid after they beat their child with a coat hanger. Fun times.

When you are a little unhinged at the best of times, the stress of teaching will invariably push you over the edge. I ended up on sick leave at least twice, and had to leave teaching all together this year. So I can scratch that one off my list of possible sources of income, contribution to society and meaning. It also means that the years I spent training as a teacher are pretty much in the dustbin as far as preparing for my future goes.

I also took a run at being an anthropologist. I started a Masters degree in Physical Anthropology in 1996. I loved it. I loved the bones and the study of evolution. I was going to analyze the efficacy of a particular computer program for divining the degrees of relationship between species represented by fossils. It all looked good. But then I got sick, and the shame of being crazy and the guilt for having abandoned my supervisor got to me. I spent months trying to recover and trying to psych myself up to go back, but in the end I couldn’t face my professors because I had been so weak, and failed them so badly. Of course, now I can see that I wasn’t weak, and that they would have welcomed me back (well, there was a chance anyway), but at the time the internal stigma that I have absorbed from living in modern western society overwhelmed me. I bailed on the degree, and on any chance at feeling like I was following my dream.

So, for those of you playing along at home I have now lost the solid dependable career with good benefits and a pension, and the more risky career in the field that I loved. I have also had minor jobs here and there that fell apart for a variety of reasons, companies went out of business, my job was no longer needed, things that were not my fault. But what it all adds up to is the fact that I have failed utterly to create a way for me to participate fully in the working life of my society. This is not the only way to create meaning, but it is a big one.

So what do I do now? I have little part-time contracts here and there, that don’t use my skills and don’t pay very much. I spend time with my friends and my family. I read the newspaper and get outraged at the state of the country. I get indignant about how the crazy folk are treated in this world. I spend a lot of time alone, trying to figure out what to do next. The obvious thing is to finish my degree in the spring of next year. The thing with that is I’m not sure where that will lead me. Will I be able to find a job anywhere that will let me work part-time, when I am not crazy, and not fire me if I can’t come in to work for a week?

I floated the idea with my family of doing a doctorate. That did not go over well. They need me to start earning my keep, and plunging back into the financial black hole that is higher education does not fit with their world view. I think doing research and maybe teaching adults would be a good fit for me. I would love to investigate things like identity formation in online communities, but it would appear that that is completely out of my reach. Scratch that off the list as well.

So can I create enough meaning in my life working at some part-time admin job, or trying to cobble together enough short-term contracts to support myself? Can I be happy with being a good friend and trying to be politically active on the internet? At this point I have no idea. All I know is at 4am when anxiety wakes me up and it is dark and lonely I feel that there is precious little meaning in my life. I feel like what I have to contribute is not really valued, and that the great wider world is not interested in making accommodations for my disability so that I can give what I am able. I am still sick right now, and I recognize that tends to favour pessimism and dark thoughts, but honestly I’m having a hard time clinging to the shreds of my self-esteem as it is. I don’t need the world telling me that I am not “pulling my weight” or “contributing” if I am sitting at home being crazy.

The search for meaning is universal. It spawns religion, academia, science, wars and art. I’m not looking to become enlightened and find the one truth that will reveal the secrets of the cosmos. I’m looking for a reason to get out of my apartment once in a while and to feel like I have a purpose beyond staying alive to prevent my relatives and friends from grieving. The world is stacked against the mentally ill in this regard. Many of us can’t make a living the way mentally healthy people can, and we don’t get the sympathy and understanding that cancer patients get. For the record, I have nothing against people living with cancer. It is a horrible and sometime chronic set of illnesses that can render a person disabled and non-functional. I am glad that people with cancer get the sympathy, understanding and support that they do. I just wish I could get it too.

It can be pretty disheartening. I think, ultimately, the meaning in my life will come from a patchwork of friendships, advocacy and maybe a bit of writing. I think I have to give up on travel, having the financial freedom to follow my interests, and paying my rent, in terms of feeling like a worthwhile human being. Overcoming the internal stigma we have been socialized to believe in means giving up traditional notions of meaning. I don’t want to sound shallow, it is not cool to say that you want money to make you feel worthwhile – although the people saying that usually have achieved a level of wealth where they can own a car and take a week off here and there. Money won’t buy you happiness, but it will buy food, office appropriate clothing and internet access. It is sort of a prerequisite for stability, and I think stability is what allows you to find meaning and happiness. Stability, unfortunately, is precisely what a person with Bipolar Disorder lacks.

So, what I can take from this ramble through my discontent, is that I will not find meaning until I can move away from traditional beliefs about what meaning is and where is comes from. Everyone has to find their own, I think my tribe just starts off lower on the ladder when it comes to this topic. I will be fine. I’ll figure something out, eventually. I am just tired of having to climb from greater depths to reach the place where everyone else seems to have started out.

Managing mental illness and the rest of my life

I wanted to keep a record of dealing with Bipolar Disorder and a relatively high functioning life. I was diagnosed in ’91 and have since taken 2 degrees and held a couple of different full-time jobs. In the last 8 years I have taken a total of 2 1/2 years off to recover from major episodes, but I am now working part-time and taking my Master’s degree part-time.

It is easier for me to be totally ill and give up all together than to be a little bit ill and try to keep the rest of my life going. There are some resources for people who are not working, like meetings and classes. But they are all during the time when I work, so I can’t really take advantage of them. Sometimes I just want to let go of my life and wallow in being ill, divest myself of all my responsibilities.

I have a great therapist and a very good shrink, who don’t let me get away with much, and that has been instrumental in keeping my life together.

At the moment things are going very well, so we’ll see how I do with school and work over the next few months. The fall is always a tough season for me, but so far so good.