bipolar disorder – Life and Lims

Treatment for mental health is hard because diagnosis is even harder

Part of the reason I write this blog is to document my particular struggles with mental health. Having to deal with some kind of challenge that’s within the range of mental health is just as common as dealing with some kind of difficulty with any kind of physical health. In other words, either category is EXTREMELY broad. Physical challenges can range from diabetes or thyroid issues to cancer or gallstones. Any disruption in mental health can lie anywhere in a big range, too. Physical illnesses can sometimes prove tough to pin down, but it seems figuring out a diagnosis of a mental illness can prove consistently more difficult. Even if a diagnosis seems mostly straightforward, finding a treatment that will help the person going through it to get to a fairly “normal” state is far more difficult.

I’m in my mid-40s, and I’ve been diagnosed with depression, bipolar, or atypical bipolar disorder variously over the past 25 years or so. I’ve gone through a number of antidepressants and some medicines that are usually prescribed to treat bipolar disorder. Some have helped for a short time, some haven’t helped at all, some have made me feel worse. Some have helped enough for me to live my life pretty normally. I’ve been seeing a very capable nurse practitioner for the past five or six years, I think, and I’ve been on an antidepressant that’s pretty much kept me mostly in “normal” mode. But I’ve still had bouts (or very, very long, standard stretches) of what I’d just call irritability. And I know that just isn’t ME. I’ve known instinctively that it’s more a quirk in my brain chemistry or something, rather than a defining characteristic of who I am. And my extremely busy life managing a household, taking care of four daughters (now one of whom is married and out of the house, so the dynamics and responsibilities have somewhat changed, but not at all taken her “off the register,” so to say), working from home part-time and volunteering and managing fairly big church responsibilities, just for a short summation, keeps me running at a high level. It’s easy to say it’s “understandable” I’m irritable. But recently I thought it was time to check in with my practitioner and address the irritability again. I’m exhausted from “managing” it. Surely there’s something out there to help me with my underlying mental health so I’m not working so hard to manage and can just live, expending a bit less energy on coping?

So we visited a few weeks ago, and talked for a while. She is fantastic because she’s very thoughtful and discusses the issues with me, asks probing questions, revisits assumptions, etc. We’re partners in my care, and I really feel she’s very knowledgeable, and she’s sensitive as well. That’s a biggie. She said to me that perhaps I’m not really on the bipolar spectrum at all. All she could say was that I’m just my own thing. So there might not be either a diagnosis for whatever I present as yet, or because mental health really is so varied and unique to each of us, maybe there isn’t or won’t be, if that makes sense. All we know is there have to be some kinds of ways to help me with some kind of existing medication so I can function better. So she said she’d try something, a medication that psychiatrists sometimes use to help with that part of mood. It’s a seizure medication used off-label in this way. She tried me on a very small dose, and I actually do feel it’s helping. My life is still CRAZY BUSY!, but I feel a little less like I have to work hard to manage my mood even while I’m managing my life. So I’m feeling hopeful and a little happier, just to have an extra tool in my arsenal, and to know that my practitioner is really awesome at her job.

This just leads me to a few conclusions yet again: we still don’t know a lot about mental health and illness. We’re doing better than 30, 50, 70 years ago, but we have far to go. And we need far, far more practitioners who have the training, experience and skills to deal with this complex issue. So many people are suffering and there simply aren’t enough practitioners around to help them. I’m blessed to have found someone who can do what she does. Even that’s not perfect, but it’s really about the best I think there is. Meanwhile, I just wish, wish, wish we had more incentives for people to go into the profession and stay there, that the specialists were available in every small and underserved area.

I write this because I just want to put my voice out there. I’m mostly a “success story,” and that’s just because I’m not crippled by my lapses in mental health, and pretty well functioning, and I’m a very resilient, determined personality. I have at least enough income and resources that I have been able to find someone to really help, but that’s still taken a great deal of time and work on my part. It’s been a long and tough journey. It shouldn’t be this hard.

As we work to try to improve outreach, availability and quality of care, and genuine help for those of us with mental health challenges (again, not at all just a small portion of our population), let’s continue to just be kind, patient and understanding to those around us who struggle and need our help. It still does mean the world.

One of Robin Williams’ final gifts? Getting us talking about mental health

I love this tribute to Williams by Disney.

Four days after the devastating news of Robin Williams’ suicide, I’m still feeling the loss of someone I never even knew personally. Perhaps it’s because his genius acting work has been a part of my life pretty much ever since I can remember (oh, yes, I was watching when he first hit the airwaves with “Mork and Mindy”). I can mark important times in my life with what movie he was doing at the time; for instance, my husband and I saw “Aladdin” on our first date nearly 22 years ago. Even now, our family quotes from that movie.

But another part of the reason this event has affected me so deeply is that it strikes close to home. I started this blog to write, in part, about mental illness, to just put my own experience out there. And Williams’ death has had me thinking a great deal in relation to how I can understand it and how I want to be able to continue to share my feelings with others. There have been some poignant tributes and some spot-on blog posts and articles about suicide, about depression, about the almighty struggle some experience with their mental health. I don’t think I can do any better, but I can just share my viewpoint.

Just a few weeks ago, I participated in a study focusing on cognitive issues in women who have breast cancer (I was part of the control group). I was happy to do my part for science, even if I had to drive a few hours away to get to Stanford University. Since the study is looking at cognitive effects of cancer or the treatment for it, it included questions and assessments not only about impairment of cognitive processes overall but also about emotional status. Since I had indicated on the questionnaires and intake forms that I take medication for depression, the researcher who worked with me asked me at the end of our time a little bit about my feelings and opinions on it. She said she focuses on psychology and has noticed in her time studying it that there are still not nearly enough treatments available for depression and other mental illnesses. Some people in the blogosphere and media have wondered why Williams, for example, didn’t just “get help.”

Here’s the sad truth: there isn’t nearly enough adequate “help” out there, whether it’s in the form of medications and other medical interventions and treatments or it’s in the form of professionals and non-professionals who really are good at what they do and can give superior guidance.

There is still an epic shortage (in my experience and opinion) in the number of qualified professionals who can treat people from all economic and health-care-coverage situations. This is particularly true in the case of the number of doctors or other practitioners who specialize in and are licensed to provide medications. In my experience, for instance, there are three psychiatrists covered by my health insurance (which might also be the total of all the psychiatrists in my city), and only one is taking new patients. That one I didn’t particularly like, and it’s crucial to have a certain level of rapport with someone who’s treating you for your brain chemistry. So I was lucky enough to hear about another provider who ended up being a better fit for me, but her office is an hour’s drive from my home, and her practice is not covered by my insurance. I am also lucky enough to be able to afford paying out of pocket for her care. But what about those who don’t have insurance at all, who can’t afford out-of-pocket costs, who don’t have access to transportation, etc.? There are a LOT of people not being served.

Then we move on to the issue of actual treatments available, even when one has unlimited access to doctors, therapists, and whatever medical intervention is available. And as the researcher and I discussed a few weeks ago, there are far too few options. I’m on an antidepressant that’s worked well enough for me the past couple of years to get me to where I can cope adequately with life’s challenges without being taken down completely. But there have been times medications weren’t doing enough for me, and it was hard.

There have been at least the number of times I can count on one hand, and possibly up to two hands, moments I’ve been in the blackest and deepest abyss and felt suicidal, even if it was only briefly. And I could go on and on about how if you haven’t been there, you can’t possibly know what it’s like. Logically, in a part of my brain, I knew I didn’t want to hurt my loved ones, didn’t want to deprive them of me. (That’s addressing the “selfish act” observation…) But it was a very distant part of my brain and one that was clouded over by the overwhelming despair and hopelessness of my feelings. As I’ve written before, it’s those times and others that I now feel my brain chemistry betrayed me. And it’s a very weird, unnerving feeling to have your brain working against itself and yourself. Even though I could logically call to mind times I enjoyed life and felt fulfilled and useful and vital and important to others, to the world, I just didn’t FEEL it. And it became impossible to imagine or believe I would feel that way again.

No amount of love and support and encouraging words from others (assuming the best, that one does have that kind of support system — believe me, there are plenty who don’t have that, making things even worse) can make that feeling go away. If your brain chemistry is off, it’s off. And that’s why we absolutely MUST find more options to treat that chemistry. There are far too few options now.

I appreciated this one article on Mashable, for example, that asserted, “Finally, We’re Talking About Mental Illness Like Adults.” People have generally been very thoughtful this week as they’ve discussed Williams. I sincerely and strongly hope that this discussion can continue, that a few important good things may come from this tragedy: 1) Let’s stamp out the stigma for good. Let’s work towards a culture in which people who experience any kind of mental illness can talk openly about it without fear of being judged or misunderstood or mistreated. Let’s make it as easy to talk about as any other illness that’s more “physical.” 2) We need to push for more research into more varied medications. There are a number of drugs out there (but not nearly enough) that are made for the treatment of mental illnesses, but a lot of them are similar to each other and work the same way. Pharmaceutical companies need to branch out and work on far more kinds of medications that attack mental illnesses in different ways, from different directions, etc. 3) We need more doctors. We need more prescribing practitioners available everywhere to everyone. This will not only be the kind thing to do, but one that will contribute to reducing many other existing societal problems: homelessness, joblessness, some violent crimes.

These aren’t easily attainable goals. But we certainly need to work towards them. It will make a world of difference to millions.

Partnering with and struggling against at the same time

The Gilbert Arizona Temple, photo courtesy of lds.org

I just came across this brief article about a Jewish rabbi visiting a newly built temple of my faith, The Church of Jesus Christ of Latter-day Saints: “What I learned from visiting the new Mormon temple.” I am always interested to hear what others think about visiting our sacred sites, and I enjoy discussion and interaction with other people of faith, regardless of their doctrines or denominations. I heartily agree that we can all learn from each other, which is hardly a revelation, but a simple but important reminder. What struck me tonight was this sentence from his article: “My Jewish beliefs are strongly built on the Jewish idea of covenant (humans as partners with God) and Israel (humans wrestling with God).”

This really encapsulates what I’ve been experiencing myself, today alone, and the past weeks. I’ve been going back and forth, sometimes within minutes or hours, between the partnering with God and the wrestling with God. I have moments of clarity, of Spirit, of confidence that I can keep moving forward, of just-enough-hope, and then moments of frustration, anger, sadness, fear, and not-enough-hope. I’m seesawing.

I am all too aware of my firm belief that we lived as spirit beings with God before coming to this life. We knew we were coming here, and it was part of a plan for us to grow from spiritual toddlers to at least spiritual adolescents (that last bit is my little twist). I believe that I accepted and understood, at least in some measure, that life would be challenging, most of the time. But for some reason, right now, with whatever mixture of things that are working on me (a series of particularly challenging events, my particular chemical balances or imbalances, my background, my expectations, my hopes for my own future and those of my children …), I’m finding it difficult to feel consistently optimistic about my ability to just keep up, to keep pushing forward, “enduring to the end,” as scripture puts it. I’m wondering just how much faith I had in myself back in that time I can’t remember right now, when I was eager to come to this life, even knowing some degree of how difficult it would be. The question always is: how much did I really know then? How could I really know without having experienced it yet?

I’m really digging down deep to try to change some ingrained mental habits, and they’re fighting back hard. I know that my faith is both getting me through/should be getting me through. I’m trying to figure out how to truly rely on God at a level I most surely have not yet attained. I am all too aware that I’m trying to do too much on my own without being yoked with the Savior. But getting from point A, where I am, to point B, where I know I could/should be, is a bit of a mystery to me at this very moment.

My spirit soars when I experience those moments of covenant, of successfully partnering with God to do something good, to serve and uplift someone else, to create, to make something or someone better. But I’m still struggling mightily. I’m coming to appreciate more fully the concept of wrestling.

So this evening, I thank this good rabbi for his simple words. He probably had no idea what sharing a brief blurb about his beliefs would do for my thinking. I’m still going to be wrestling for a while, but it’s a mitzvah to have new insights.

Joining the blog-a-thon on mental health

Thanks to the magic of WordPress, I just found out (a couple of weeks into the party) about the 2014 Blog for Mental Health. How nifty! I began this blog nearly two years ago because I wanted to share my own experiences with mental health, among other things. I’m happy to see others speaking out about their own experiences with quirks of the mind, or with those of loved ones.

Yes, there is most certainly a stigma surrounding the topic of mental health/mental illness. Our culture is making progress but we still have a long way to go. If someone were to “go public” with their diagnosis of cancer or diabetes, for instance, pretty much everyone else around them would know what it meant, how it was going to affect the person, and maybe even how to be of support. But use the same scenario but with the diagnosis one of a mental illness, then far fewer people would know what that diagnosis entailed, how it was affecting the person, or how to be of support.

I will concede that mental health is a little trickier to diagnose or pin down with such clarity or certainty as other physical diseases or conditions. But that does not mean it doesn’t exist or that it’s a person’s “fault” or some sign of weakness. There are still many people, even in 2014, an age where we have pretty much eradicated polio and can easily and cheaply treat other diseases that used to decimate communities, who consider mental illness either “all in someone’s head” or something that could easily be defeated if someone just tried hard enough. That’s simply not OK. Too many people are suffering without proper help because of too much misunderstanding and not enough support. I admit that I feel a tad nervous sharing what I experience (despite my being a fairly outspoken person) because I know what others’ misconceptions can be, and life is tough enough already, folks.

So I say, Kudos to the people at A Canvas of the Minds who began this project two years ago. I repeat the words they share from the founder: “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.”

Glad to read about others’ experiences with mental illness

So I was appreciative this week to receive a book to review called Pros of Prozac: A Faith-Based Memoir of Overcoming the Stigma. Given my experience in book reviewing and my personal interest in mental health issues, this book was a welcome read.

It’s a little slip of a book, just over a hundred pages, which the author says is mostly intentional, so someone interested in the topic can just get a quick overview of her experience. So I read it in one sitting this afternoon. Beca Mark writes about her experience with postpartum depression after the birth of her first child, struggling with mood and depression, and finally deciding to seek professional help and take medication for her depression. It took 15 months to choose to take Prozac, and Mark discovered two things: one, why did she wait so long while suffering so much? and two, she realized that she had actually been struggling with depression her whole life but hadn’t known it until Prozac made her feel really good and really herself.

Mark’s experience is actually what I would call fairly straightforward. She was really struggling, and then struggled with just the concept of taking medication because of the stigma it has in our society (and the real lack of open discussion of the topic in her otherwise close-knit, very large family), and then finally decided to give in and take the medicine. And in fairly short order, she just felt a whole lot better. And she has felt consistently better in the years she’s been taking it, which I’m guessing is probably about five. She makes clear that it hasn’t made her life easy-peasy or super-simple or solved all her problems. It has simply made her more able to think clearly and be motivated and to just be her best self. As I put it, it’s helped her to be able to cope in the way that most “normal” people (i.e. those who don’t have depression or other mental-health struggles) do.

Mark says this is a faith-based memoir, but it’s really not very heavy on the faith angle. I think her beliefs and the culture that surrounds those faith beliefs give a frame to her story, but even those who don’t consider themselves very religious can find a lot of value in her story. All in all, this is really a simple tale, and one that seeks simply to provide some basic information and encouragement to those who may find themselves struggling emotionally but feeling hesitant to accept that there might be a “label” for what they’re experiencing and that medication might help. Our culture at large still places stigma on mental health issues, as well as taking psychiatric medication. And individuals within faith communities may very well sometimes compound that stigma by saying that if a sufferer could just be more self-reliant or more faithful, they wouldn’t suffer.

I heartily support Mark’s goal to contribute to the general discussion and bring this topic “out of the darkness” into the light of day. The more those of us who do struggle with emotional challenges really talk openly about this and show that we’re pretty normal, typical, “good” people, and not weird or weak or something negative, the more others will be better educated, aware, and accepting — and supportive. And, even better, the fewer the number of people who do suffer from mental health issues will feel marginalized or hesitant to seek treatment. Mark really doesn’t want more people to suffer in silence and without treatment. Why should they? It’s pointless to suffer when there is help.

In applying Mark’s story to my experience, I find that mine is a bit more complex. (She does say that mental illnesses are complex in cause, etc.) Because I have bipolar issues, finding medications and treatments to keep me on an even keel can be trickier. Antidepressants help the most, but they tend to “poop out” after a year or two. I’m in that spot right now, I think. I have been on a number of different medications over the years, and it hasn’t been as “simple” (that’s relative, I know) as being able to get on Prozac and stick with it for years. I would like that a lot if it were that comparatively simple.

When it comes to the faith angle, I just wrote that there really isn’t a lot of it in here, so this book is really accessible for everyone. I wouldn’t have minded seeing more, personally. I have written about how my faith informs and is affected by my mental issues, too, and I don’t think Mark really digs into that as much as I have, even.

But bottom line: a good read, particularly for those who are “new” to the idea of having possible emotional struggles, and one that’s simple and straightforward and encouraging. Kudos to Beca Mark for putting her story out there and just being honest. The more of us who do so, the better.

So glad I could help

Few things give me greater satisfaction than having friends (or even just acquaintances) come to me as a resource when faced with questions relating to mental health. Perhaps in part it’s nice to know that, despite my sometimes quirks or slightly “off” behavior, they still consider me a valuable source of information and even wisdom. It’s nice to be valued, to be needed, to be seen as able to dispense tidbits of guidance. It’s even better to feel that maybe, just maybe, everything I’ve gone through can help someone else, that I can maybe help cut short the long journey for them just a little, provide a quicker route that still gets them to a good destination.

I can tell you about my therapists, my psychiatrists (i.e., medicine-dispensers) and medications, the books I’ve read, the ups and downs and ins and outs. I can talk about the wacky ways my mind is able to play tricks on me, despite my hyper-awareness that it can, and a sort of vigilance about trying to think clearly and navigate life from a kind of emotionally handicapped state. I can share the surreal-ness of dealing with others who have been in worse shape than I have ever been, of their living in (and trying to reason from within) realities that just don’t line up with the reality the rest of us know. I can look back on my own experiences and say, “I wish I could have seen the whole picture from the beginning, because I would have gone right to ___.” Man, does it feel good to think that I might be helping someone jump over hurdles with relative ease and speed that I’ve had to walk around, re-jump, and move around countless times.

Again, in this latest discussion, a friend and I agreed that it would make life so much better for everyone if all of us could just open up about our real challenges. Most of us have something, a weakness or an addiction or a habit or an illness, whatever, that we find embarrassing or shameful somehow, that we would really rather NOT talk about. And there are plenty of stigmas left in our culture about lots of problems, including mental illness. It just doesn’t help that there aren’t really clear-cut answers (let alone even questions) about how our minds and emotions, etc., work. The science is much clearer with other health problems. So it makes mental illness still hazy and misunderstood and even a little scary for people who don’t have to face it head-on regularly. If just more of us SPOKE UP! Whatever your shame, your stigma, your weakness, your difficulty, just talk about it. Yeah, unfortunately, you’re probably still going to be judged and misunderstood by some, maybe many. But you could help so many others.

I feel so weak and so isolated sometimes, and then nervous about talking about my experience. Because like most everyone, I just want to be liked, to be understood, to be respected and appreciated. And that stigma can put a big roadblock in the way of that satisfying goal. But I want to help other people. I want to pave the way for less stigma, for more understanding, even for better science (somehow). So, I talk. I write. I blog. I’m open. It can be nerve-wracking and painful. But I’m doing it anyway. Because I’m glad I can help. So call me or write if you have questions or need advice for a family member or friend. Reach out. Sometimes you might need oven mitts, but pretty much I’ll always be happy to talk, if I can help someone else.

Don’t use my mental illness as an excuse to write off everything I say or do

I’ve been thinking about this idea for a long, long, LONG while, and I’ve put it in words now after reading some others’ blogs. Here it is: My mental illness is NOT an excuse for people with whom I interact to just write off anything I say or do that they disagree with. And yes, this extends to opinions that I have that are carefully considered, based on life experiences and, yes, even my interactions with YOU, who are so eager to chalk up my opinions to craziness.

I’m not going to say that in my darkest moments (and the times I feel most ashamed of myself and my behavior) I never say something I regret or that I don’t even completely, 100%, mean. I do. But, honestly, DON’T WE ALL? We all get tired, angry, frustrated, annoyed, irritated, strung out and worn out, and say and do things we don’t mean or that we just regret. So in this way, I’m really no different than any “normal” person, if you’d like to use that easy but non-precise terminology.

Here’s what really, really, REALLY bugs me: when I choose to discuss an issue with someone who is treating me poorly, in an effort to improve the relationship or our necessary interactions, and then that person essentially throws up a wall and refuses to talk because they don’t like what I have to say. People do that a lot anyway, sure. But I am convinced that some people through the course of my life have been all too quick to throw out the baby with the bathwater when it comes to anything I say. If it’s something they don’t want to hear, they say, “You’re overwrought. You don’t know what you’re saying.” and then either studiously ignore me or what I tried to discuss, or they react with righteous indignation, even putting a burden of guilt and shame on me for daring to be open. They might even point the finger at me outright and denounce me to others. Not cool, people, not cool.

Because I’m that type of person. I don’t like having any kind of relationship with someone, whether it’s family, friends or acquaintances, or even work associates, that essentially forces me to bury any hurts or problems. I like to TRY, at least, to resolve the issue, to bring it to light and talk about it and free all from the burden of darkness. I think it’s much kinder to everyone. It does generally involve the peeling back of a scab, but then that sore is much more likely to heal over and not scar or get infected. It’s worth the initial discomfort.

But it angers me when my efforts are met with derision, nastiness, and blame. I have also tried to be somewhat open about the mental illness with which I struggle on occasion. And that, unfortunately, is seen by some people as a free pass, as a way to characterize my opinions as simply the effects of a frenzied mind. And they’re not. I might end up being not as soft and kind as I generally am (I think I’m pretty good at phrasing things well most of the time), and I do regret that. But that doesn’t mean that what I have to say is wholly without merit. If there’s a problem festering in our relationship, it’s NOT ALL ON ME. Face it: it might be you. Or at least partly you.

Let’s not be too quick to peel blame off ourselves and throw it back on another person, especially someone who is an easy target like one afflicted with mental illness. Let’s stand courageous and brave and compassionate and stop deflecting. Please just don’t write me off. My thoughts, opinions, and concerns have value. Please treat them accordingly.

We never fully know what we’re getting into, do we?

In some of my most challenging hours, I’ve told my husband I feel it’s unfair to him he’s had to deal with me and my mental health issues. (This cuts both ways, though, since I’ve also told him during similar moments that if he thinks it’s hard to deal with me — which he’s never said but which I assume he must think, since that’s how I roll [and we know what they say about assuming] — that it’s even more difficult to be me and to deal with me because I have to be with myself 24/7. Wouldn’t it be nice if I could just leave the room or the house and leave myself behind sometimes? Sigh.)

Sure, we’d talked about my issues before we married. Sure, he seemed to be OK with them. But honestly, how much experience did he really have with them? Even I hadn’t had a whole lot of experience with them — at 23, looking back, at least, I was just in the early years. Yes, I’d had some bad episodes, but in part I think I felt they were behind me because they came after some really big challenges, including a major heartbreak and beyond-disappointing treatment by the best friend I thought I’d marry. I really had no idea just how much a part of me those episodes would become, that they’d keep visiting, keep creeping down on me from the darkened attic in which I’d locked them away. But as in those gothic tales I love, the crazy wives in the attic never stay away permanently. Mine screams and yells and sometimes escapes, even setting fire to my life on occasion. No, I might lock her up again, but I can hear her every so often up there, pacing the floorboards and sometimes even moaning.

Nope, if I had no idea what I was in for, there is no way my husband did. And my heart aches for him because of that. At those times of difficulty, when I’m overtaken by darkness and crying hopeless, bitter sobs, I wish he could have a wife who’s not incapacitated for hours or a few days at a time. I just feel bad for him. He’s a great guy. He’s a great husband and has been unflaggingly supportive. I know he’s felt utterly helpless, unable to do anything for me, but he’s there, always hovering and ready to do whatever he can. I always appreciate that. Lesser mortals would have packed up and left long ago, I feel.

But it makes me realize that none of us ever has any idea what life will hold. We can make the best plans, predicated on our best educated guesses and experience, and we can move forward with certain expectations. But life always has surprises up its sleeve. At this stage of my life, I know that spouses can be unfaithful; they can leave; they can change their personalities and life goals entirely; they can even die far too young. Despite great education and job training, unemployment can strike for months, even a couple of years. Illness or disability can effectively rob someone of a functioning spouse. Things happen. And not just little things.

I had no idea what hand I’d be dealt in life when I was still growing up in my parents’ home; I still had little idea when I was a young adult. Even now, I’ve got a better idea, but I also am much more aware that plenty can life ahead of me, supposedly halfway through this mortal existence. Yeah, I wish my husband hadn’t gotten handed the mentally-ill me. But he did also get the really amazing me, who’s capable and really useful and fun and cute to boot. I’m not as thin as I’d like, but I look pretty young still and I’m attractive. Not bad, I think! 🙂 Plus, I cook, I bake, I am a great gift-giver, I’m clever and creative, I pay bills, the list goes on … I’m really handy to have around.

So life has its challenges. It delivers a lot of unpleasant surprises. That’s the case for both me and my husband. But life has also been really good to us in so many ways, and we still have each other. There are yet many good and bad surprises ahead. In some ways, I’m not really eager to find out what they are. Yep, the disturbed wife in the attic will keep re-emerging; I’ll keep locking her up. And all kinds of strange things will emerge from the closets and from behind the bushes outside, even. But I’m just going to keep going and do the best I can to handle whatever comes a-knockin’. ‘Cause that’s life. And since I’ve made it this far, I’ll just try to make it further.

When I’m boiling over, just grab some oven mitts

I’ve just had another week (couple of weeks? month?) that ended horribly for me mentally. I ended up nearly incapacitated with hurt, anger, and hopelessness, curled up on my bed in a puddle of tears and surrounded by tissues that I’d flung wherever. And something that has struck me (yet again) is how difficult it is to explain this outcome and all the little triggers, inner and outer, that lead to it. I still am convinced that most people do not have the least idea how to deal with someone in this situation, or clearly on their way to it. This even (maybe especially?) includes family members, who have known me for years and have varying levels of knowledge about the struggles I face periodically, but who still just don’t KNOW what it’s like to be me at those moments or how to be WITH me.

I can’t blame them, most of the time, honestly. In their place, I might be unsure what to do or say (and how to handle any lightning bolts that come zinging my way out of the storm) and possibly just find it easier (safer?) to wait until that storm was over, the clouds all blown away, until I came near again. But when it comes down to it, in my own place, I can’t help at those times but feel angry and resentful that few people do know how to approach, how to offer support. And if family members, who are supposed to love me and be there for me, just as I’ve always tried to do the same for them, cannot be there for me, what does that say about them, or even about me? Those moments leave me mostly alone, feeling abandoned. I mentioned on Facebook, to friends, that that medium is a dicey place for trying to reach out for true support. How in the world do we use the one medium that keeps us in touch most readily to really connect, to really help each other, when it generally is limited to use as a place for sharing mundane details of day-to-day life, news of our kids’ accomplishments, and photos that show us in vacation spots or in our best moments? I do appreciate that when I put out that little message, some friends offered their support and care, just saying they were thinking about me. That did mean something. A lot, really.

But in real life, how in the world do I get support from those whom I need when I’m giving off a really bad, hopeless, negative, angry, and, yeah, even “crazy,” vibe? Most normal people would run away, far and fast. This is been one of my biggest concerns over the years as I’ve struggled with this beast of mental illness. I’m a pretty “normal” person most of the time, and people say they find me to be upbeat, happy, blessed with a great smile. I care and really put myself out there to help others. I do spend a lot of my time and energies trying to help those around me. But sometimes life just gets to me or I end up spending too much of my energies on others and then run dry in my own well.

It’s kind of like I’m boiling water on the stove, and as long as there’s still water in the pot, even if it’s only a half-inch of water, everything’s fine. But the second that water boils off, the pan is in big trouble. And despite my best efforts to balance my life (ha!) over the years, it’s still a really tricky act to pull off successfully, and I burn out sometimes. The pan bursts into flames as soon as it gets dry, and I need to be removed from the burner, cooled down, and filled back up again with water. Those are the times I need loving friends and family who, armed with oven mitts, are willing to help me cool off and refill my reserves. I sit on the stove sometimes and whistle like crazy, wondering where my mitted friends are, because it’ll take a lot longer to get myself filled up on my own merits. If left for too long, I stay hot and just get angry.

I know it’s hard to come near me at those times. I realize that. But I know I’m worth the effort. I know that I am a good, genuinely caring person who uses my talents and resources to be helpful to others. I’m fun, I’m generally kind, I’m pretty handy to have around in a lot of ways. So I give. Even just in a balance-sheet kind of way, I’m worth the investment. But during all those good moments, I still fear that those I care about aren’t taking the time to find out more about the few really bad, challenging moments that are my reality just as much as they are the good ones. I want my friends and family to want to really get to know me, to understand me a little better, so when the storms come, they’re ready for a little lightning. Because when the sun comes back out again, it will warm them even more radiantly.

All in all, this is probably true for every single one of us, whether we have mental illness or not. We need people in our lives who really get to know the whole us so they’re ready for the times we’re not our best selves. But it’s just magnified a lot more with mental illness, and society still places a stigma on it, where many people misunderstand and avoid in their ignorance. I wish we could all do better to stop this from happening. I would be happy to keep all this to myself. I’m not proud of who I am in my dark times. But that’s my reality, one I’m trying to mitigate and improve, bit by bit. So in the interest of increasing awareness and helping others, just by being open and sharing information, here I am, baring my soul. And thanks, from the bottom of my hot saucepan, to those dear friends who have braved the storms and held me until they’ve cleared. The world is brighter in so many ways because of you. Thank you, my dear ones.

That traitor the brain

I’ve been fascinated for years by how our own minds can turn inside-out on us. Memories can and often do turn out to be slippery and even downright wrong in any “normal” individual. Brains getting eaten up by dementia lose familiar people and chunks of time entirely. Brains that are schizophrenic or otherwise split can create whole other lives out of nothing.

Stories that take those quirks of the human mind and turn them into horror tales or mysteries are particularly gripping for me. The movie Memento is just one example of a story that turned a character’s reality on its head once it played itself out. Oh, what horrors our own brains can subject us to!

But those stories generally just get me thinking about the mysteries of our minds and the reality of life and its quirks. One tale that shook me and just felt more personal, however, was the true story of mathematician John Nash in the movie A Beautiful Mind. For those who haven’t seen it, skip over this paragraph. But those of you who have will know what I’m talking about: Nash is schizophrenic and ends up realizing that he’s created people and scenarios in his life that are completely fictional — nonexistent. The story here is that Nash, against all advice, decided to just will himself into getting rid of his symptoms, telling himself over and over again that the people he thought were friends simply were not there, even though he could see them.

I love how Ron Howard fashioned this film: he takes the viewers right into Nash’s “reality” and makes us believe that what he sees is real. And it’s not. It’s absolutely shocking, jarring, to find out that what we saw and accepted as truth was not real.

As I’ve learned over the years that some of the feelings I experience — depression, despair, racing thoughts, and so on — are actually just symptoms of out-of-whack brain chemistry, I’ve come to appreciate just how scary it is to be under the control of a brain that is not in itself in control. At times, I’ve been able to kind of step away from my own feelings for a bit and coolly and rationally observe that they are simply constructs of my biology. Some moments I’ve felt extreme sadness or irritability have had no logical basis in reality; they haven’t been caused by any external event that would normally make someone feel sad or angry. I’ve found some comfort in those times I’ve been able to do that; it hasn’t changed entirely how I felt, but it’s made me realize that my biology has hijacked my mind and that I don’t have to be completely a slave to it.

But it’s unnerving nonetheless to know that my brain — basically the seat of who I am — is a traitor. It takes me places I don’t want or need to go. It terrorizes me.

No, I don’t hallucinate. I don’t experience some of the particularly challenging effects of certain brain disorders. But from my own experience, and thanks to that window into Nash’s world that Howard created, I can certainly empathize with those who do experience that. It’s harrowing.

We rely so much on our mind, on our memories, on everything that we’ve stored within and taught our brains. We expect our minds to be infallible, to always tell the truth. We expect them to reflect reality. Because reality is what we think we’ve always lived. But what if our minds aren’t storing memories quite as neatly as we’d thought? What if they are reflecting to us a life in a funhouse mirror?

I guess I’d like to thank my brain for mostly getting it right (I think …). And I’d like to make others aware that some people’s brains just don’t do what they should. That reality is not always real for everyone, that even depression is a state that feels absolutely and terribly real to its sufferer but looks very different on the outside in everyone else’s reality. That sometimes we have to visit someone else’s world so we can help them leave it behind. A bridge must be made between the two realities.

I’m grateful for the people who have taken the time to try to understand my reality, to try to empathize so they can offer the right words or gestures of help. I’m hoping that in writing about my particular mind and where it’s led me, it might help others as they build those bridges.