This is the conversation that matters: Kitten makes me think {trigger warning for suicide}

This weekend is one of terrible memories, and beautiful, loving memories, and pain and joy and confusion and grief for my friend. Talking to her today, reminded me again that there is no correct way to grieve, and absolutely no one way to grieve a suicide. The only thing I know for sure, is we need to be and feel freer to talk about suicide. We need to be more open about this thing that robs so many people of their lives and people they love.

We need to stop talking about selfishness, and weakness and giving up. We need to start talking about fear and vulnerability and pain. We will always be afraid of suicide. It is complex and terrifying, and to think about a person being in that place, where it makes sense, where it is the only option, challenges everything we know about life. The thing is, that is even more reason to talk about it, to drag it out of the shoe boxes and closets we hide it in. We need to take our fear about this kind of death and bring it out into the open, where it can be poked and prodded and explored. We can’t let our fears jeopardize the life of  that person, in that place, who needs some kind of contact, or some kind of love or lack of judging, or whatever they need.

A veteran died a few days ago, in a particularly horrific and documented way. He posted pictures of his suicide in progress to Facebook. Obviously this just magnifies the terror and pain that his family feel, but somehow he wanted people to know. He wanted people to understand that he could not do this any more. He needed to share what was happening to him. You can never go back and change how things happened, but I can’t help thinking that maybe, if there had been space and understanding, he could have talked about it before he went into an alley and ended his life. If he was so desperate to make people see what he was doing, it makes me think that perhaps he had wanted to talk about it before, but didn’t know how, or didn’t think anyone would listen or understand, or just didn’t know who to go to. After this happened, his friends and fellow marines started posting messages to each other that they were there if anyone needed to talk. They were offering support to each other, at any time, in any place. Maybe he did not know that that was available to him. Maybe suicide was so shameful to him (as it is for many people) that he didn’t think he could reach out. Maybe his death will mean that one man or woman will be able to find someone to talk to. Maybe even in a climate where suicide is a topic not to be discussed, these veterans will provide the service to each other that the government and the military cannot seem to provide.

My friend wanted to know if I thought she whined about her loss too much, or that people thought she talked about the person she lost to suicide too much, and I thought, how can you call your grief process whining? How can you think you are doing this wrong if you are still going on with your life, and still breathing, and still loving people? Even if you aren’t doing all that well, how can your process of grief be wrong? My friend is being open and honest and refusing to put her sister into a hidden box. She is bringing the love and the tragedy out into the world. She is refusing to buy into the shaming and hiding that surrounds so many people lost to suicide. By her actions, she is breaking up the layers and layers of stigma and deception that cover up so many of the lives lost this way. She is forcing us to have a conversation about suicide, one that is long overdue.

I told her that maybe her openness would create the space for that conversation, and maybe just one person will feel like they can talk about what is really going on in their head. Maybe she can make it safe for just one person to open up to someone. It is cheesey and clichéd, but so damn true, that maybe she can prevent just one person from dying like this, and that would be worth more than any thing I can think of. Maybe life is a gift that she and her sister can give to someone else.

Maybe that can be what the veteran gives to us, and to his brothers and sisters in arms. I hope that his family choose, as part of their grieving, to be open, to share, and to work toward advocating for support for people like this man, who needed so much more than was available. I hope that the marines who posted messages of support to each other keep talking. I hope they are willing to act on their suspicions and ask a person they think is in trouble if they are ok, if there is something they can do, if they can be there to listen. If they can’t do this, then I hope that their grieving helps them, because it is not their responsibility to fix this. I just hope that some people will be as brave as my friend, and will make this something that we can talk about, that this becomes something that people can be open about, and that we lose something of our fear that talking about suicide will make it worse.

This is a hard time for my friend, but what she doesn’t know, is that in dangerous times I have thought about her, and the real implications of what I wanted to do, and that I then chose not to do it. I told someone what was in my head, and I got love and acceptance and support, and some pretty swift action, and that somehow penetrated the layers of crap I was under. I asked and I got help, and I know that is ok, and that it can be the start of living. I want other people to know that too, and that they can ask the person they think is in trouble too. I want people who ask and answer to have the  resources they need, to help, and to be OK themselves. There is no way to stop this every time. We need to understand the reality that this is sometimes a fatal illness. Some people don’t make it, they are worn too thin, but there are moments, and windows and opportunities, and if we shut up with our fear, we will miss them.

Thank you to my friend, and to everyone who is having this conversation.

Now what?

I applied for a loan from a fund that helps people with mental health issues start businesses. The really cool part was that they offered mentoring as you start and to help you succeed. I got turned down. Mostly because the scope of what I want to do doesn’t match what they usually fund. I kind of knew that going in, but for some reason I am totally crushed.

Maybe I just don’t handle rejection well. Actually, I think it is that this project suddenly seems huge, and scary, and overwhelming, and I don’t know what to do. There are federal and provincial grants and loans available for people starting small businesses, but I’m suddenly afraid that I won’t be eligible for them either. Then I think about how fundamentally insane it is for me to start a business. Then I think about the fact that there would be competitors. Then I think about how bad it would be if it failed. Then I cry a little.

I really want to do this. I can’t find work, and I know there are people like me, and I could employ them. It is a good idea. I’ve run it past several people, and they thought it was less crazy than I did. I am just currently bent under a wallop of self-doubt and a crisis of confidence.

I have to call my elected representative’s office. I wrote them about my idea, and they said to call. I am supposed to talk to someone at the Inclusive Design centre here later in the week. They would be a competitor, but I think my plan is different enough that it might work. There are still things going on, but today I feel like crawling under the blanket on my couch and playing phone games, and pretending that I never put myself out there.

I think healthy people feel things like this too. In fact, I know they do. I just can’t get out of my head that I am overreacting because “CRAZY”, or that somehow I won’t be able to handle doing this because how could someone as broken as me do anything of substance?

Am I going to spend the rest of my life being afraid? I’m afraid of strong emotions. I’m afraid of being overwhelmed. I’m afraid of failing because I don’t know how I will react. I’m just generally terrified of getting sick again, and then that scares me that I won’t ever try anything. Super.

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.

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.

I’m not sure if it’s time to post to Facebook again

It is Mental Health Awareness Month again around here. Last year I wrote an epic status update on Facebook, outlining my mental health issues, well, some of them. It was a fairly effective way of outing myself to more distant family, those weird Facebook-only high-school friends, and the odd collection of people I have gathered from various random sources (mostly friends of friends). This last group are mostly Americans, who argue endlessly about politics and gun control, so the whole revealing myself as a crazy person was a bit of an interesting experiment.

For the most part everyone behaved. There were the usual “don’t call yourself crazy” lectures, and a lot of “but you aren’t like ‘those’ people”, and of course the obligatory “but you seem so normal”. All sort of annoying and condescending in their own special ways, but well meaning, and pretty much willing to listen. The thing I get the most reaction to is the whole “I wouldn’t change my experiences if I could” thing. Most people just can’t conceive of not needing to be cured of bipolar disorder. To them mental illness has no up side, no positive angle. What they are not seeing is the fact that I would not be who I am without it. Being bipolar is pretty fundamental to the way I developed. It gave me my self-reflection, my compassion for suffering, my understanding of power dynamics and oppression. It gave me a much more robust understanding of joy, contentment and happiness than my peers. I see the light better because the shadow defines it.

So, now that it is “be condescending to a crazy person” week again, I have to decide if I am going to post this year. It has been a much better year, as I measure them. I got healthier, I didn’t get hospitalized, I left some groups that were draining energy from me, and I spent more time with friends who really support me. I’m ready to work (even if I don’t have much of a job yet), and my mood is pretty stable.

Ok, not totally stable. I completely had a panic attack a few days ago, but it is a good story. In the past a panic attack would have collapsed me for days. The recovery was always slow. I became one with the couch. This time I made cookies. Literally. I went home and baked. My husband fully supports this coping mechanism. Apparently, I am learning how to manage again. I suspect that perfectly ordinary, mentally stable people bake as a coping mechanism too. There are way too many baking magazines in subway news shops for this to be just about providing sweet sustenance to your friends and family. I think I have stumbled on to a great secret of the sane world – baking as an antidepressant! Don’t tell anyone. Big Pharma will have it packaged in less time than it takes to brown the edges of a nice peanut butter oatmeal cookie. It can be our little secret. Oh right. Facebook.

I object to Facebook on a number of levels. I am not the user, I am the product. Facebook owns everything I post. They own all my little political rants, and my reposted pictures of kittens, and all the weird conversations I have with old roommates. They own my last “I’m crazy” post. They own all the responses from my nearest and dearest and others. I know that, and I rationalize it by saying that I post with eyes wide open. I know I am giving my words up, so somehow it is ok. It’s not really, but most of the people I “know” on Facebook have no other contact with me, and so I have no other way of contacting them. Ah, the life of the netizen.

The other thing, says my HR manager best friend, is that I am wrecking my employment reputation by ranting about city council and the federal government. I maintain that any employer who would disqualify me based on my dislike for our mayor, is not an employer I would want to work for, but as my savings and my family’s good will dwindle, this feeling is eroding. So, if my potential bosses would freak out because I have a serious problem with his worship, or our glorious leader, it stands to reason that they would shred my resume seconds after reading about my mental health. Stigma-busting and supporting workplace mental health are great for corporate fundraisers, but god forbid you actually have to hire one of these people.

So I’m torn, between my own little Facebook activism, where I force my friends to recognize that they interact with a nutcase on a fairly regular basis, without appreciable trauma, and wanting to present a clean, or sanitized view of me to the working world. I want to be sort of in your face about my illness. I’ve always said that I had enough backup that I could afford to be really open about my life. That resolve is being tested. It pisses me off, though. I know that we all curate ourselves for different audiences. Who I am with my mother is awfully different from who I am here, the sticky part comes when you have to hide parts of yourself, or risk being ostracized or left out. In this case it would mean continued poverty and deprivation. I don’t like being told what to do, and not posting on Facebook feels like someone telling me who I can tell about me. I don’t like it.

Chances are I will post. Some part of me likes watching my acquaintances wriggle around in discomfort as they try to be supportive. Maybe like is the wrong word. It is more about some level of satisfaction that they have had to stretch their minds a little to encompass something they are really good at compartmentalizing away. It is ok for Annette to be eccentric, but keep the mumbling real crazy person away from me. They don’t understand how closely related to that person I am, but that isn’t really the point. Posting about my illness is practice for being out in the world. In my vain little head, I can change them. I can make them think differently. Maybe I can get them to treat someone better, or judge someone less. I’m foolish and pig-headed that way.

On Thumb-sucking, Security Blankets and Trusting Myself Again

It has been a year and a half since I was discharged from the hospital. I still struggle with keeping my feet under me, but for new reasons. I’m not depressed, I’m not battling crippling anxiety, and I have not had to fight off mixed episodes or general craziness for a while. It’s been pretty good, from that perspective.

The real problems are things I am less familiar with. I need a job. I need some direction. I need more sleep. I need to get the physical issues under control.

The medical stuff is sort of crazy related. The kidney damage from the meds means that I have to drink a lot of fluids. That seems to have antagonized my bladder, and now I can’t sleep for more than an hour or so without having to get up. I’m sort of getting used to the sleep deprivation, but it makes everything else that much harder. But, I’m getting off track. This is not meant to be a whine about my aging, cranky body.

I do really need a job. I’ve applied to a whole host of jobs I am sort of qualified for. I have a newly minted masters in Educational Technology, and a few years experience in creating online courses for clients, but my resume is horrible. It is just a listing of all the things I either failed at, or failed to finish. It is a mess of jobs, a career I bailed on, and a collections of degrees that make me pretty interesting in conversation, but not the kind of person you would hire. I’m going to need to luck into something, I think. I have a line on some freelance contracts, and you hate to put all your eggs in one basket, but there are not a lot of baskets around at the moment.

I guess I need to find some way to sell myself, never my strong point. Part of the problem is that I’m not sure how much I believe in the product.

Every time I get sick there is a long road back to being ok. Part of the process is giving up the security blanket. I know how to be a sick person. I’m a pro. The people around me, the ones who love me and support me, know how to deal with a sick me too. We have a lot of practice, dealing with the sick girl. I know how to ask for help, for pity, for support, I know how to get what I need when that constitutes coddling and walking around me on eggshells. That sounds really bad, and it isn’t actually that awful. When I’m sick, I need help with really basic things, like laundry and groceries. I need someone to help me get my bills paid, and to tell me to stop crying, and that I can do this. I really need cheerleaders to get me through when I have no faith. I need hand-holding, and reminders to eat and sleep. It is pretty hard on my husband, and my family, and I’m sure it does not endear me to my friends.

When I’ve been hospitalized, it usually comes as a huge relief to my husband. He can go to work without worrying that he will come home to my body. He knows I’ll be safe there, and he can relax a little, usually for the first time in months. Once I’m discharged the worry starts up again. There is always the questions of just how “better” I am. How long can I be left alone? Will I remember to eat, to sleep? Every bad day is a warning flag. Every bad mood is a potential disastrous slide down into a pit. Every night of bad sleep, or every ridiculously early morning, brings up questions of hypomania. If I am irritable, it is a bad sign. If I get angry, it could be the harbinger of doom. All the people in my life, including me, judge, evaluate, dissect, and categorized my moods, the things I say, and all the other indicators we can come up with. It is a pretty exhausting process, but for a while anyway, it sort of needs to happen.

When you come out of an episode, you are still really fragile. You are like the insect, newly moulted. The new skin, or the new exoskeleton, is soft, and offers very little protection. You need to keep wrapped up in the security blanket. You keep sucking your thumb, for comfort, and as a reminder that you are not yet whole.

Obviously, this can’t last. You need to give up on the protections and get out of your head and into the real world at some point, or the recovery stalls. The problem with this is trust. I have to trust myself. I have to start to believe that a bad day is just that – one day – and not the beginning of the end. This usually takes me a couple of months. It is slow, but I get there. The process is slowed down, though, by my well-meaning loved ones, my doctors and the world in general. They protect me, the keep pulling the blanket up to my chin, they dance around me like I was made of only slightly hardened jello. It is way too easy to buy into this.

This time I didn’t have a job to go back to. My job disappeared into the meltdown of the company I worked for. Every other time I have been working on getting my act back together I have had a job to go to. I’ve had responsibilities, and a place to show up at. This time it’s just me, and school, and school is done now. I have no external structure to rely on for a reality check, and so I have been relying on the people around me, and they don’t trust me.

Well, they trust me, they just don’t trust that I am healthy, or that I can handle adversity, or that I’m not teetering on the edge of disaster at all times. My problem is I tend to buy into this a little too easily. It makes me question myself, and, let’s be honest, it is too easy to give in to it. It enables me to stay sick, or stay fragile, longer than is really necessary. I get to figuratively limp around for a lot longer than I really deserve.

This time is has been worse. I was really sick for a lot longer than usual. I was hospitalized twice in one year, which has never happened before, and I scared the bejeezus out of the people around me. Hell, I scared me. Getting better was hindered by the fact that I wasn’t really sleeping well. I’m still not, not really. Plus, there was the problem of not really having anything to do. I was in no shape to job hunt, and I could barely put sentences together for school. It was a very long, slow process. I had a lot of little relapses, very bad weeks, and some rather dumb slip-ups. It has taken a year to get to the point where I could realistically do a full-time job. So now, I have to get rid of the security blanket.

I’m terrified. I’ve been protected and coddled for two years, and now I’m facing the prospect of just being fine, of giving up my special status, of being ok. I don’t think that I can adequately explain what it is like to give up on the fantasy that you are sick and fragile, or impaired. You lose your excuse for everything. You have to take full responsibility for everything. I know how spoiled that sounds, really I do. It is just that when I am sick, I really can’t do all this stuff. I really am disabled, impaired, or broken. There is just an invisible line that you cross, where one day you are weak and in danger, and the next you are doing ok, a contributing member of the world.

I’m at that point.

Wish me luck, but not too much. I need to get my act together on my own.

On side effects and choice

So, I went to the doctor today, because they wanted to talk to me about some blood test results. No problem I thought. My creatinine reading is usually off, and I figured that’s what they were worried about. It’s a walk-in clinic doctor and I had forgotten to warn them when they ordered the blood work. I have Nephrogenic Diabetes Insipidus from taking Lithium for 12 years. It means that my kidneys don’t concentrate urine. Long story short, I know where all the public washrooms in the Greater Toronto Area are. Not fun, but I have learned to live with it.

So I’m all prepared with my speech about how I forgot to warn them about the blood test. Problem is, that wasn’t what was wrong. Turns out the filtration rate in my kidneys is so low it is indicative of chronic, severe kidney disease. Off to the specialist with me. When I originally had problems, the specialist said I might lose 2-10% of my kidney function per year, or nothing might happen. I had been going with the nothing option because I had no symptoms and everything else seemed stable. Looks like I might have been wrong. Specialists are on holidays in August, all of them apparently, an no one seems alarmed enough to send me to a hospital, so I get to wait until September to find out whether panic is appropriate in this situation. Either way, it is making me think.

On a mailing list I am a part of, there has been a discussion lately about ECT. Specifically the ethics of putting an ad online looking for volunteers for a study, with the explanation that ECT “creates new brain cells”. This last bit was news to me, as far as I know creating new brain cells, not just new connections, is up there with having tea with a Higgs-Boson particle in terms of probability. Either way, this ad created a great deal of discussion. There was a response to the ad in this online forum, in which the respondent called ECT a human rights abuse. I am not a fan of throwing terms like that around, it smacks of fear mongering and invalidates the experiences of people who have benefited from ECT.

I have two friends who have been zapped in a medical way. Both of them experienced some memory loss, but they also derived benefit from the procedure that lasted for quite a long time. They have both had ECT multiple times and neither of them seem bitter, angry or feel they were coerced into consenting. This is not to say that all people who have ECT have a lovely time of it. Many people are seriously damaged, there can be catastrophic memory loss, and some people lose themselves entirely. ECT is obviously a last-case scenario as far as I am concerned.

One of the big issues was consent, specifically informed consent. Many patients are given a pamphlet, and a date and time for their first treatment, and that’s it. This is obviously not sufficient. One of my issues with consent while you are an inpatient is a bit tricky for me. I know, from my own experience, that when one is suicidally depressed you don’t always make the best decisions. For example, some depressed people are in so much pain that they decide to kill themselves. Probably not the most rational decision. When you are that depressed, and therefore a candidate for ECT, is it even possible for a person to give consent or are you so tortured and in so much agony that you would consent to a lobotomy if you were told it would alleviate your suffering?

There is a great deal of discussion on the list, and among patients in general, about autonomy and choice and being in control of your own treatment. There is a lot of talk about how we are sometimes treated against our will, that doctor’s prescribing practices are heavily influenced by pharmaceutical company PR and swag, and that the mentally ill are treated like imbeciles. We are “in denial” or “not in our right minds” according to the advertising campaign of one of the big hospitals here, and this touched off a firestorm of offence and indignation in the part of the community I am in contact with. The argument being that madness is not incompatible with competency, that we are still able to be part of our treatment decisions and that we are not mindless idiots because we occasionally lose our marbles. To a certain point I tend to agree with this.

The problem lies in the fact that you can’t have it both ways. Either you are competent to make decisions, and can consent to ECT, or you are not. If you are not, all choice is taken away from you and you lose all control. If you consent to something like ECT out of desperation without really understanding the consequences because you are too out of it, you could end up losing years of your life. It is a difficult thing to grapple with.

Historically the mentally ill have been treated very badly. There are still people alive today who were treated with lobotomies and insulin comas. Very often a crazy person would be locked away from society until their minds had been destroyed by drastic treatments. The goal was often not to cure, but to make the person docile enough to manage. There was not a lot of informed consent going on.  In the age of pharmaceutical miracles, drugs were used that caused horrific side effects. They controlled the psychosis or the mania, but left the patient little more than a zombie, or caused irreversible movement disorders. Patients who rebelled and decided to live with the psychosis rather than become a chemically created member of the living dead were often involuntarily committed for non-compliance. Neither option is really ideal.

In my time as a medicated crazy, the drugs have been marginally better. Sort of. Some of the newer atypical anti-psychotics are known to cause diabetes or metabolic disorder, weight gain is a given, tardive dykinisia is still a very real possibility and even the much lauded anti-depressants have serious side effects. I have often been told that the side effects from the SSRIs are negligible, and are no reason to stop taking them. Some of them include: decreased sexual ability, somnolence, agitation, increased risk of suicide, significant weight gain, and many more. None of these will make you very happy, and some of them are serious health risks. Benzodiazepines, which are the miracle drug of choice for anxiety, are fabulously addictive. They are the famous “Mother’s little helper” that so many people have become addicted to. They are also ridiculously cheap, and handed out like candy. One of the side effects of heavy benzo use is depression, which can lead to a prescription for SSRIs. You can see where this might lead.

As I mentioned before, I have had serious problems with lithium. I never had a problem with feeling dulled, or stupefied with lithium. I was always able to function well, and maintained my ability to be creative, but the long-term effects on my body have been harsh. I don’t actually regret taking the drug. When I am being honest with myself I know I would not have survived the 12 years I was on it without the stabilizing effect of the medication. I just wish there had been more alternatives.

I also took another medication in the 90’s which unbeknownst to me rendered the birth control pill ineffective. This was not listed as an issue in the product monograph, and my doctor was not aware of it until I showed her what I had found on the internet. From what I understand, that is part of the product warning now, but when it affected me there was no mention of it. Not a great way to engender trust in your customers.

There is a lot of research into medication now, and a huge emphasis on medical treatments for mental illness. I believe there is something wrong with my brain, and I am not opposed to medication, but I find this single-minded focus on drugs to be alarming. There are a number of non-chemical treatments for mental illness that have been found to be very effective. Cognitive Behaviour Therapy and Dialectical Behaviour Therapy being the two examples I am most familiar with. There is also some evidence that improving the living situation of the person tends to improve the symptoms of the illness.

Being in a panic about whether you will have a safe place to live and enough food to eat will exacerbate symptoms of even mild depression and anxiety. The stress of living in poverty, or fearing for your safety, can be triggers for mental illness, and there is a lot of research that mental illness is much more prevalent among the poor.

I worry that the focus that is placed on the biological determinants of the illness takes away from attention being paid to the psycho-social factors that are involved. There is a lot of money for new drugs, but the waiting list for the DBT program at the local psychiatric institution is two years long, and they only open it up for new people every once in a while, so you have to keep calling and hope the list is open that day.

Doctors who are being honest will tell you, and I have been told this, psychopharmacology is still in the medieval period of it’s development. We still don’t know why the medications that do work, work. The mechanisms of how drugs relive the symptoms of mental illness are hinted at, and researchers have some ideas, but they have not been completely pinned down yet. In the mean time the pharmaceutical industry is driven, not by altruism, but by profit. GlaxoSmithKline was recently fined $3 billion dollars for misconduct in the promotion of it’s products, two of which are used in the treatment of depression. This does not make me trust them more.

I fully believe that medications will become better and safer, and I think that eventually pharmaceutical companies will be reigned in and will not be able to exert as much pressure on doctors. I think there will be more regulations about publishing all the studies which are done on new drugs, not just the ones that support the position of the drug companies that funded them. I also think mental health treatment will become more humane, and more compassionate. I think there will be more funding for non-medical interventions and community support. I am glad that I went mad now and not 60 years ago.

I do wish, though, that there was more weight given to the issue of side effects, and damage to patient health. Side effects can be debilitating, physically and mentally. Most people who are not compliant with medication regimes are that way because they cannot tolerate the way the drugs make them feel. This is very rarely taken into consideration. I had a doctor ask me once, during a lecture I gave, what to do about a non-compliant patient. She said “I keep telling him how good the medication is, but he just won’t take it”. I asked her if she had asked him why he wasn’t taking the medication, and she just looked at me blankly.

Medicine, regardless of the whole “do no harm” thing, is not without risks. Surgery is risky, chemotherapy is poison and causes infertility and infection, there are no medications without side effects. Psychiatry is no different. Until more research is done and safer drugs are available we will have to live with either serious illness or serious side effects. Psychiatry needs to make sure that there is informed consent, which means that before ECT, or lithium, or paxil, a patient needs to know what damage the treatment can cause. Even the very depressed deserve to know what they are getting into.