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.

A way to avoid ranting on Facebook about suicide

In 2008 in Canada 3,705 died from suicide (Statistics Canada). That is over 10 per day. Major depression and bipolar disorder account for 15 to 25 percent of all deaths by suicide (CTV, Oct. 3, 2011). In 2005, among US adults, there was a life time prevalence of Bipolar Disorder of 3.9% (NIMH). So my people are disproportionately represented among the victims of suicide. This comes as no shock to me.

I have always known that the disease that affects me, and several of my friends, is sometimes fatal. It is part of the symptomology of our illness. We live with that. Our families live with that. Sometimes we don`t make it. When you live with chronic illness, it is amazing what you can know and still keep moving. I think for most Canadians, getting up most days and wondering to yourself if you are going to be able to hold out today, would scare the crap out of them. I think being constantly assaulted by ideas about the best, least messy way of going would push the most stable of people into my end of the mental health spectrum.

Once you have seriously considered suicide (and I think keeping the necessary materials on hand at all times and having a roster of good plans counts) it never completely leaves you. It is always plan B. As a good friend of mine says `don`t worry, you can always kill yourself tomorrow`. This is how I live. For the record, I am not currently in danger of dying. It is just that it is never far from my mind.

What kills me (yes, it`s a horrible pun. I could not help it) is the way the suicidal are treated. Suicide attempts are brushed off as `cries for help`, or minimized, ignored and scorned. First, if you need to yell that loud for help – YOU NEED HELP. Professionals take note: HELP THEM. Cancer patients who develop metastatic tumors are not histrionic, they are having a relapse of a life threatening illness. No one tells them that they are taking up bed space and should get back to real life. This is real life. Even the much maligned Borderline Personality Disorder patient is suffering from a real illness, of which severe and persistent suicidality is a symptom. If I am sick and need medical attention, then I should not have to argue my way into treatment.

I have had to do this. I have actually had an emergency room doctor tell me that they only have bed space for people who have already attempted. Thanks for playing, but please come back once you have already damaged your kidneys with an overdose. Suicide is not reversible, suicidality is. In the best case scenario where you actually go for help, you pretty much have to prove you are a danger to yourself by outlining in detail your plan in humiliating detail. We are made to feel that we are abusing the system for trying to get into psych care. Psych hospitals are not all that much fun. If I want in, then something is very wrong.

I`m not saying that everyone should get to use up all the acute care resources they want rather than dealing with the underlying issues that cause the crises in the first place. What I am saying is that we need resources to deal with chronic mental illness and underlying issues. 30 minutes a week with a psychiatrist who does not have time to look up from their prescription pad is not going to cut it.

If you live with crushing depression, pathological insecurity, cognitive impairment and an inability to regulate your emotions then that is happening 24 hours a day. You can`t manage that on your own. You have a recognizable disease. You need medication, talk therapy, support and community based programs if you are going to survive. Without that a person will become the needy `frequent flyer`at the local hospital. They will take up acute care beds. They will make repeated attempts at suicide, with varying degrees of success or failure. They will be made to feel like an ungrateful parasite on the beleaguered health care system. This will not alleviate symptoms. At best it will put a band-aid on until that person stops being actively suicidal.

Or, I could be treated as a patient suffering from intolerable symptoms. I could be helped to find a psychologist and a psychiatrist who are covered by my health insurance, who will have the time and inclination to work with me to unravel the threads of my illness. I can be directed to skills groups like Dialectical Behaviour Therapy where I can be guided toward learning how to manage my emotional life without harming myself. If patients are given the right kinds of resources (and the complicated thing here is that each person is going to need slightly different things) then they have a fighting chance of becoming functional, contributing members of society.

Which is to say they won`t be taking up all the acute care beds all the time.

I am not naive, Ontario is broke and out medical system is a mess. We don’t have a lot of extra resources hanging around, right. So of course we can’t afford fancy extras like therapy for everyone that wants it. Wrong. Because if you don’t pay for appropriate treatment for the mentally ill like me, you end up with one of two things. One, people will die. There will be some people who don’t make it to acute care and actually die of suicide. As I mentioned above that is about 10 people per day. They have parents, spouses, children and friends who will suffer for the rest of their lives. So you choose – hydro subsidies or dead people.

Two, you end up with a large number of mentally ill people, who could be leading fairly productive lives, bouncing in and out of acute care. This will cost the taxpayer mountains of money, because regardless of how scandalous hourly rates for psychologists are, they are less than room and board in a hospital, doctors salaries, nurses salaries, medical intervention and associated costs for hospitalization.

So take suicide seriously. It is a dangerous symptom of a group of horrific illnesses. We can either deal with it appropriately, with respect and treatment, or we can stigmatize it, shame the sufferer and risk their lives. Cancer is another chronic condition, yet we are willing to spend any amount of money for diagnostic imaging, surgery, chemotherapy, radiation, prosthetic devices, reconstructive surgery, rehab and wellness groups to get those patients back to as functioning a life as possible (even if there is permanent impairment). I am glad we choose to do that, I just wish we could do that for my people too.

It gets better?

I’m struggling today. Some days it gets hard to see past the end of the couch. I’ve never really been in a place where I had no idea where I was going. Every time I’ve been acutely ill I at least had something I was going back to, now I’m not sure.

I have a few short-term contracts, and I will probably finish my degree in 2013, but it seems really surreal right now. Might have something to do with waking up at 3am this morning, but it could also just be that I really am a little, or a lot, more adrift this time.

To be fair, the last year has been remarkably hellish. In 12 months I spent almost 4 months in hospital, changed all my meds, watched a friend get horribly abused at work, BSed my way through 6 months of pretending to be well and for a final kick watched the company I work for implode.

My boss revealed himself to be a real jerk. He ignored sexual harassment, and somehow manipulated me into being quiet about it, even though she was my friend and a great support to me. He preyed on my weaknesses to shut me up, and I am still not totally recovered from the guilt.

My new boss and the owner came to tell me I had no job while I was in the psych ward. Funny story, I don’t think my new boss had ever been in a psych hospital before. He looked a little nervous, like someone with wild hair and their tongue hanging out was going to bust into the room at any moment. To his credit, he did pretty well.

So now I find myself mostly unemployed, not eligible for disability support, and dependent on my family again. The effect on my self-esteem and optimism is sort of crushing.

I wake up every morning before it is light. The anxiety keeps me from going back to sleep, and the meds only do so much. I spend a lot of time scrolling through Twitter, because at 4 in the morning your attention span is only about 140 characters long. If I’m lucky my brain kicks in before noon and I can get some work done for my contracts.

Eating is a chore. My stomach is a mess, mostly from the anxiety. I don’t do well with solid food most days. People tend not to realize that mental illness effects almost all of your bodily systems. I’ve lost over 20 pounds in the last few months (not such a bad thing given how much weight the meds put on), but it makes me tired and prone to colds. My doctors keep telling me to get back to the gym, which would be nice, but when getting out of the house to buy toilet paper is a massive undertaking, getting downtown to the gym seems like an Everest expedition.

I feel pretty whiny today, it would seem. In all honesty it is getting better. I don’t have the crushing depression, the suicidality or the panic. I can get out, most days. I see my friends. I have sort of a life. I just feel cut off from the real world, where people go to work and have paychecks and participate. I miss when weekends were a holiday and not just another set of days to be endured. I would love to have to set an alarm clock on Monday. I know that sounds absurd, but 1) I know I’ll be up earlier than the sun and 2) I have no where to go. I miss the mundane bits that everyone else groans about.

Living with chronic mental illness is doable. I know that, I’ve been doing it for 20 years. It just seems this time that I am further away from my real life than I have ever been. I’m sort of coming to the realization that I was sicker this time than I have ever been, and dredged up more crap than I have before. Perhaps I should give myself a break on this one. It is just hard to. I grew up in the same society that stigmatizes the mentally ill as lazy, and fundamentally character flawed. Some part of me still thinks I am malingering. Ok, enough. I need to go and get my head together. It gets better. I’m fairly sure of that, I think.