mental health – Life and Lims

Can we make schools actually fit students, rather than the other way around?

I’m coming to the end of my parenting-kids-in-school era. My oldest is 27 and youngest is 16, and the latter is my last still in (K-12) school. (I’ll just refer to her as R.) R has ADHD and takes medications to bolster her mental health as well, so we’ve been constantly looking for ways to support her in life and school. She has some wonderful talents and gifts and we know she will succeed in life and in a career, but getting her through school has been an almighty challenge.

R has a 504 plan and is a junior in high school. It’s been CONSTANT work to make sure she is staying on top of classwork and sometimes just passing classes. Math has been a huge trial for her; she’s failed every semester so far in high school and has had to do summer school or “credit recovery” after the fact to make up the worst grades and pass with a D. Some classes she does well in, with Bs and As.

I was the “model student” in high school, with all As and academic awards, graduating as valedictorian. I loved to work on my own and get ahead to stay busy in classes like algebra. At the time, I didn’t appreciate that my particular brain and way of learning fit perfectly into the style of school our country presents to all students.

However, now, after having one daughter with Down syndrome and an IEP go through the system and now having one with ADHD and a 504 in it, I so appreciate how many different kinds of learning styles and students there are, and the system caters to one kind. ONE.

After watching my bright, talented and clever child struggle for so long in school, I am annoyed. Frustrated. Angry. Why do we still insist on having one system for everyone? Why do we essentially say, OK, we know there are lots of learning styles, and kids and people in general think in many ways and approach learning in many ways, but … oh well. We’re going to just stick with one method of teaching.

So what’s happened is that we have codified — in long-set, cracking concrete — one style of educating, and it only really works well for a small portion of students. It works mostly OK for a good chunk of the others, and not well at all for another chunk. So rather than changing the approach and integrating different types of classes or changing the system entirely, we have put Band-aids on it, jerry-rigged it (badly and ineffectively) by making some concessions to “different” types of learners by using IEPs and 504s.

Can’t we change the system rather than putting little fixes in? I know the answer to that is no. We also can see that our health care system doesn’t serve a lot of people really great either, but a radical overhaul will never happen. Meantime, Band-aids.

And what that means is millions of kids grow up not learning as well as they could. They aren’t as well prepared for adulthood and careers. (Don’t get me started on how we’ve pushed higher education for everyone, either, when that’s a terrible idea for so many reasons…) They’re growing up feeling less-then, inadequate, stupid.

I’d love to see things change. I’d love to see school set up in a way that works for my child with ADHD. For the whole environment (in the classes that she attends) to be styled in a way that allows her to think the way that works for her.

Don’t tell me that “the real world” doesn’t work that way. I may agree that in some ways, no, it doesn’t. But we all get to choose careers that not only are interesting to us, but fit our style of working/thinking. Whether we’re sitting at a desk at home or an office, whether we’re driving around, whether we’re interacting with people a lot or keep to ourselves, whether we have a 9-5 workday or a schedule we set ourselves… work life is really varied. It’s easier to find a career that “fits”. But finding a good fit in schools, where everything is made one way and the environment is the same across the board? Not nearly as easy.

The old cartoon about Einstein’s quote really really still fits what we’re dealing with. The quote has been around for a century and the cartoon… well, a while. And nothing’s changed. It’s past time to do something about it.

Humans gonna be humans

I’ve thought a lot recently about human nature. How it relates to our behaviors in this pandemic/shutdown and how it relates to other important worldwide issues, like trying to clean up the planet. This is just me, but I really think that our leaders don’t NEARLY often enough take into consideration how humans tend to behave and react. And that can vary culture to culture on some issues, and be the same relating to others.

Take litter or the use of plastic bags and straws: California has legislated the use of bags and straws, but I don’t think it’s had any real effect on how much plastic is in the environment. There are a certain percentage of people who are going to litter and not bother to take an item to a trash can that may be only 5 feet away. (I see this ALL THE TIME. I’ve witnessed people just setting down a half-full 7-Eleven cup in a parking spot as they back out and leave rather than walk it 5 feet to a garbage can.) They certainly won’t be bothered to recycle. They’re going to be the ones to keep buying (for one use) the thicker “reusable” plastic bags, which must be reused quite a few times to make them worth using that much more plastic for one bag, thus generating more plastic into our environment. Then there are others of us who always separate our trash from recycling items, always throw away our litter in trash cans, always walk our grocery carts to the designated spots. (And even people who try to do what they can environment-wise too often just forget to carry around reusable bags, whether they’re cloth or plastic.)

Then there’s this pandemic. There are people who don’t think it’s serious at all and maybe even are deniers, and there are people who absolutely will not go out for fear of getting sick and/or spreading it to someone who’s high-risk, and there are all kinds of reactions/behaviors in between those two ends of the spectrum. For my part, I know COVID-19 is serious. It has infected many and has killed many. Here at its “beginning” across the world these past 6 months or so, it likely has killed more than the flu (I don’t know if we’re really going to know precise, entirely accurate numbers for another year, really, so I’m just spitballing this). Since it’s new, scientists and world leaders alike have been just trying to establish the facts about it, which takes time, and data — data that comes from more infections and deaths, unfortunately. They’ve had to make changes periodically about approaches to fighting it, treating it, locking down towns and states, countries, etc. We’ve been told different information over the course of the past few months, and while some of this information comes from some questionable sources (most of which I’ll personally label misinformation), enough comes from respected specialists. And enough of these differing conclusions (conclusions by experts drawn from facts, or data that’s the best they have at certain points in time) are reported on in reputable news media that we can’t just say people in the general public who may question or have differing opinions about necessary actions from what our leaders are telling us are on the fringe in some way.

Take me: I’m well-educated and very well-read, and I keep up (lately, almost too much for my own mental health) with the news from reputable local and national media. I’d say I’m a moderate/conservative on the political/social spectrum. And I have concluded after 9 weeks (in California) of sheltering in place that the results of this extreme action (which may have been warranted for 4 weeks, let’s say) have become far more damaging than the pandemic itself. And while opening up may lead to more deaths than we might have if we stayed sheltered in place with the same closures (which in certain respects we really can’t be sure will be the result, because of various factors at this stage of the pandemic), I think it needs to happen. And I’ve observed that our government leaders simply aren’t taking into account that many human beings are being affected. Very, very seriously. And probably most of these human beings (let’s just say aside from those in the NYC area) don’t personally know very many people who have even had the virus, let alone been seriously ill from it or died (I live in a decent-size city and have friends still in a number of locations around the U.S. and only know a few people who have had COVID). That may come across sounding like they (or I) lack empathy, but it’s simply what’s going to happen. If this were wartime — many have compared today’s situation to World War II (a false and unhelpful comparison anyway, which begs a different post) — or we were seeing hundreds of people we know in our communities die from this, we would be really motivated to stay home and do every big and small thing possible to keep the virus from spreading. But that’s not happening.

These human beings are also making comparisons about all kinds of issues that may be necessary on a legal level (and let’s face it, our society has been changed thoroughly and irrevocably by lawsuits, far too many of which have been frivolous) but that don’t seem to just “make sense” to most people who aren’t lawyers or politicians. It’s hard not to ask a lot of questions about policies or common situations being logical or rational when you’ve lost a job or know a lot of people who are in perilous economic straits, or whose senior kids are missing out on important milestones and are really disappointed, or whose kids are all at home and truly aren’t getting a “distance” education (for lots of reasons). Or who are not able to visit beloved family members in the hospital, or who need medical care for “non-emergent” concerns but can’t get it, or who are suicidal or at least dealing with far more difficult mental health conditions than when life was going about “normally.” When large retailers are open, rightly so, so people can get the necessities, but small businesses that could supply some of those same things can’t be open, especially after 9 weeks of shutdown, it doesn’t make sense logically anymore (it’s rationally a lot safer in a small business, where the foot traffic is a lot less and staff can easily clean in between customers, for example). Human beings are going to question. We’re going to ask “Why?” a whole lot. And when we don’t get reasonable answers, we’re going to agitate. We’re going to get mighty annoyed about being stuck at home (let alone rightfully scared about loss of income and inability to pay bills or getting that medical care, etc.) when it logically doesn’t seem compelling enough to do so anymore.

Politicians throwing breadcrumbs of tiny changes aren’t going to fix that. School systems not acknowledging people’s fair and reasonable concerns and questions are going to find themselves the subjects of a backlash.

“We the People” are going to ask questions and get mighty upset when we don’t get real-people, human-being answers to those questions. When our leaders speak and act in legalese or politician-ese, rather than acting like fellow human beings and replying, “Look, we get what you’re saying. If I didn’t have this experience or viewpoint or training or this legal constraint of X, Y, Z, I’d feel the same way. I kind of do. But A and B have to be done for these reasons. However, your observations are reasonable, and we can do C and D.”

We the People want our leaders to remember they are People too. We want them to speak to us as such and to involve us “regular folks” in decision-making in certain things — and there are probably more of those things that we can be involved in than they may think. Because as things are going, if this impossible state of non-living continues for much longer (it’s already unsustainable), it’s going to get ugly. For the sake of our civilization, it’s time to acknowledge that there is a lot more going on for most of the population that’s extremely serious and merits help and change.

As we “open back up”, and until there’s a viable vaccine that can help get our country and world back to a semblance of normal life (I really don’t think there’s going to be a “cure”), humans are still going to be humans. There are going to be people who don’t make any adjustments, who may come across as jerks, having learned nothing after this lengthy period of quarantine. That’s human beings for ya. But there are going to be plenty of people who will do what they can to be respectful and cautious, to do better about hand-washing or other hygiene, who will keep their distance, who may wear a mask, who will use particular caution about not being in contact with individuals who are at the most risk. It’s time we allow that to happen.

Best books I read in 2019

Fiction

Night Film, by Marisha Pessl: This novel gave me all the satisfying feels that I got from reading Carlos Ruiz Zafon’s The Shadow of the Wind. Pessl’s book is a top-notch gothic tale with an atmosphere that’s practically a solid character looming in the background. Only drawback is the few-dozen instances of strong language.

Recursion, by Blake Crouch: Recursion is a mind-bending novel that delves into the nature of time, memory, and reality. It’s philosophical; it’s brilliant science fiction; it’s a thriller. There are lots of pieces to this 3-D puzzle that come together in unexpected ways. I read it all in one evening; it was nearly impossible to put down. It’s complex and unexpected and one of those books to remember. I can’t say enough about how fascinating and mind-blowing and thought-provoking it is. Again, like above, would be perfect if there weren’t a couple of dozen uses of strong language.

The Labyrinth of the Spirits, by Carlos Ruiz Zafon: I suppose it’s fitting that since I’ve already mentioned how much I loved Zafon’s first novel in his Cemetery of Forgotten Books series, this past year he published his last book in that quartet. And while the third one was just so-so, in hindsight a useful piece of the whole picture but not fabulous on its own, this one was just about everything I would have hoped for in the final book. This gorgeously crafted novel holds within it layers of stories that have run through the whole set of books and whose threads end up tying off together by the end in some way. And each story pays homage to other stories, to the power of literature. It’s all such a love letter to books, and masterfully done. Bless you, Zafon. I still want more.

Ascending and Bright Shards (books 1 and 2 of the Vardeshi saga), by Meg Pechenick: These novels read like a nonfiction account of a real woman’s experience going on an exchange program, immersing herself in a foreign culture that just so happens to be alien. The story could very well seem a bit dry or slow to some readers, but I found it fascinating because the author makes it all seem so authentic. Pechenick fleshes out the Vardeshi culture and some of the language and approaches it with a scholar’s view. Ascending and Bright Shards are really cool books but possibly more for cerebral readers who enjoy the concept, the world-building and well-crafted characters. I’m cheering them on because this author probably isn’t getting tons of attention and I just enjoyed the whole experience of being transported in what seemed such a real way (and that the writer used linguistics to do so). I’m so eager to read the next book that I keep checking back on Goodreads to see when it pops up with a publishing date.

Nonfiction

The Valedictorian of Being Dead, by Heather B. Armstrong: Armstrong was a popular and successful “mommy blogger” who struggled with depression for decades. After one particularly bad bout of depression, her psychiatrist suggested she enter a trial that was happening at the University of Utah, very close to where she lived in Salt Lake City. She would be the third person to be “put under” so deeply with the anesthetic propofol that her brain activity would go down to almost nothing. The process involved 10 visits to the hospital over the course of just a few weeks, with doctors administering the medication and monitoring her brain waves and then bringing her back out of what essentially was a deep coma or near-brain death within an hour. The protocol had the same effect on the brain of essentially “jump-starting” it as happens with the seizures produced by electroshock therapy, but with far fewer side effects than that old but still effective treatment for depression that is resistant to medication. Armstrong captures so well the feelings and ideas that are so common in those experiencing clinical depression, those that people who have not experienced it cannot fathom, and she relates her experiences with great insight, some wit and even great compassion.

Chasing My Cure: A Doctor’s Race to Turn Hope into Action, by David Fajgenbaum: This is the story of a young doctor’s battle with a disease that nearly killed him several times and his drive to not only help thousands of other people with the disease but even to change the traditional system that has made it so difficult for researchers and doctors to make significant progress in finding causes and cures for other so-called “orphan diseases.” At the same time, Fajgenbaum describes how through his experience he found ways to better connect with loved ones and find happiness. Fajgenbaum’s story is fascinating not just because of what he brings to the table as a patient, bright doctor and researcher and even businessman, but because of how much he’s done in a short time to make tremendous progress.

The Body: A Guide for Occupants, by Bill Bryson: Before this book, I had not read any of Bryson’s work. I had heard of his talent and the light but informative style he so skillfully uses, so when this book came up for me to review on NetGalley, I snatched it. And now I am going to move some of his other books up on my to-read list. If you’d like to know more about your whole body and like to be entertained while you learn, Bryson’s for you. You should end up with plenty of tidbits to share with your family and friends. Bonus: it’s completely clean reading.

Young adult

Finale (Caraval, book 3), by Stephanie Garber: OK, I loved these books. I want there to be more and more. But all good things must come to an end, sadly. This book was just as magical and transporting as the previous two, and I gobbled it right up within a few days.
Finale wasn’t perfect; I thought the ending was a bit rushed and got tied in a bow more quickly than I thought was organic, but it was so enjoyable nonetheless that I didn’t mind.

The Start of Me and You, by Emery Lord: This is a good example of a fine YA romance with a bit of heft. It got me invested in the characters. I felt for the main character, Paige, and her challenges: She faces grief and guilt and frustration over being pegged as one Thing wherever she goes. She worries over a lot of things and struggles with anxiety. Her beloved grandmother has health difficulties, and her divorced parents throw her a curveball to worry about. All that’s not to mention just the standard high school challenges any teen has to face. But she works on ways to find happiness and has a great support system, with her family and friends. I liked her friends and their personalities and the way their group gets along. And her friendship and all the interactions with the love interest were really fun to witness. It stuck with me and I was pleased to be able to read the follow-up, which was just published this week (January 2020), The Map from Here to There.

Down syndrome PLUS other challenges, like mental health

I’ve already blogged about having an adult daughter with Down syndrome and how that’s so much different from having a younger child with DS. It’s tougher in many ways: the gap between that child and your other non-DS kids, in addition to the gap between that child and most everyone else, is so much wider than it was when they were little. You’re used to the different life, sure, but there are still plenty of times you’re reminded how things would be if that child didn’t have DS. As your other children become adults or older teens, that gap is starker.

What also makes life more … eh, interesting … is when that child has other challenges on top of all that DS does. We as a family have been so blessed that our daughter, unlike about half of people with DS, never had heart problems. She didn’t require surgery. I have always been appreciative of that. For us, however, what’s been tough has been my daughter’s emotional health challenges. I’ve blogged lots about my own mental health, so look at all that for what I’ve experienced personally. Marissa has exhibited a lot of mood swings and meltdowns for probably about five years, and those have gotten so much more frequent and intense the past six months or year. Over a few years, the doctor and I have tried Prozac on her to see if that could help her feel a little less out of control, but it hasn’t helped. Now, however, with her just having such a hard time, I’ve been trying to figure out just what we can do from here.

Here’s the thing: I’ve already written about how difficult it can be to find a good mental health provider, particularly a medical doctor — psychiatrist — who specializes in these things. It’s hard for EVERYONE who finds themselves in need of a psychiatrist. There simply aren’t enough to address the need. That’s particularly the case in smaller communities or other underserved populations. And it’s a tragedy.

Add that to the difficulty of finding someone who has the extra skill to work well with someone with a learning disability, for whom it is much more difficult to understand and express the nuances of things they’re feeling, and the challenge can be overwhelming.

I’ve felt overwhelmed by various emotions: frustration, sadness, some anger, helplessness, inadequacy … the list goes on. I feel bad for my daughter because I know from personal experience (years of it!) how it is to feel so taken over by your emotions. I also know it must be particularly confusing and scary and sad for her. But then when it just goes on and on, day after day, and the things I try to do just don’t seem to help much, I feel frustrated and angry and depleted and just ready for it to STOP. For at least a little while.

I took her back to her regular physician a few weeks ago, in desperation, hoping that he and I might be able to come up with something to help. Just a start. I told him what I’ve struggled with personally and what medications have now helped me for the past two or three years. I told him how few resources there are. I told him, “I know this isn’t really in your wheelhouse, but…” Luckily, he is a good and kind man who is happy to listen and consider ideas and research them, and I trust him to do what he can. He said he’d look into some things and get back to me.

Meanwhile, I had my own check-in with my psychiatrist (well, she’s technically a nurse practitioner who specializes in psychiatry and she is FANTASTIC), who is at a clinic an hour away from here (and that my insurance doesn’t cover, so I pay out of pocket for each visit: $100 each time I have a check-in). I told her about my daughter and asked for some ideas. I felt it was the best option for M to go to this place, since I know they’re good and they specialize in this. But I was thinking they weren’t taking new patients, which wouldn’t help me at all. Luckily, I had taken her there maybe five years ago, when she wasn’t doing too badly, so I was able to get her in again. She has an appointment in two weeks.

Meanwhile, she is having blow-ups and meltdowns multiple times a day, sometimes, and it’s a strain on me and especially on her youngest sister. I’m just holding on until that appointment. And even then, these things take time. It’s going to be more of a challenge to help her than to just be the patient myself (that is tricky enough, believe me).

I am aware often of the multiple challenges people face. Children and adults with DS, like anyone else, have various needs and overlapping issues. It can just make it that much harder to deal with each of those things. I have such sympathy for the individuals with DS who have these needs, and I definitely understand the needs and feelings of their parents and families. Each of us is going through a unique mix of trials and challenges, and many of us go through those without others realizing. My daughter’s DS is obvious to others. What is not obvious is all the other things we are dealing with. My girl is such a sweetie and so loving and outgoing and friendly and happy, and that’s what most people see. They don’t witness the meltdowns and the moods. That’s reserved just for me and mine (yay! ha). Today, I share this to help others see what happens behind our doors some days, and so others in a similar situation as we are can perhaps find something to latch onto and know that I get it. I feel ya.

She’s high and she’s low. Most people see this. I love this face. I love her all the time. But all the complexities and challenges can be exhausting.

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.

The 10 best books I read in 2015

According to Goodreads, I read 51 books this year, a total of 18,639 pages. There were just a few more that I didn’t enter onto the site, but that pretty well sums it up. Thanks to that site, I end up not having to plow through many stinkers, so I did enjoy almost all of the books I read. A few stand out, however. Here are my 10 faves from this year of reading.

Young Adult

Illusions of Fate, by Kiersten White: This was practically perfect. I borrowed it from the library but then had to buy it because I loved it so much. Kiersten White has created a world not unlike ours, set in a time much like that of the early 20th century, but has imbued its nobility with magical powers only they know about and use. Her heroine is smart and courageous and all too human, and though she is “just an ordinary girl,” she is a force to be reckoned with. That’s what makes her — and the book — so great. I just lost myself in the setting, the characters and their interactions with each other, and the story. I absolutely adored this book. Bonus: it’s clean. I rated it Mild on Rated Reads.

Circus Mirandus, by Cassie Beasley: This middle-grade book is about faith, magic and hope. It’s about opening your eyes to the possibilities. It’s about family, love and dedication. It’s sweet, poignant, delightful. It’s written for children, sure, but adults will be charmed as well. It’s one of those books everyone should get to read and keep on a bookshelf at home. And since it’s for younger readers, it’s clean. I rated it None on Rated Reads.

The Storyspinner, by Becky Wallace: This book with a strong female heroine is an engaging tale of danger, cunning, political intrigue, magic and a few touches of romance. The plot and writing are excellent, seeming to have come from a more seasoned writer, and once I got into the story, I could hardly put it down. It’s clean; I rated it Mild on Rated Reads.

The Weight of Feathers, by Anna-Marie McLemore: The prose in this Romeo-and-Juliet tale set in the Central Valley of California that swings between two carnival families is just so, so lovely, and the writing is so masterful it’s hard to believe this is a debut novel. It’s gotten some hype, and it actually lives up to it. I rated it Moderate on Rated Reads.

Challenger Deep, by Neal Shusterman: This book is one of those Important Novels people should read to gain a bit of empathy, understanding and awareness about mental illness, particularly in teens. It could have foundered in less skilled hands, but Shusterman has the chops to make this brilliant. He writes in an author’s note at the end that his own son “journeyed to the deep” and with his help, he’s “tried to capture what that descent was like.” He also points out the reality that helping people who are dealing with mental illness “is not an exact science, but it’s all we have – and it gets better every day as we learn more about the brain, and the mind, and as we develop better, more targeted medication.” I rated it Mild on Rated Reads.

Fiction

The Lake House, by Kate Morton: Yes, I adore Kate Morton’s books. This one did not disappoint. Morton is a master at crafting these kinds of novels: long and richly detailed stories of family secrets that span generations and decades, that have long-reaching consequences. As I reluctantly and slowly closed the back cover, I was overcome by that sadly delicious, mixed feeling of completion that means a book has brought me much gratification as I’ve taken it all in but regret that the experience is over and can’t be duplicated. And it’s clean reading: I rated it Mild on Rated Reads.

Us, by David Nicholls: The book is practically perfect: it examines so beautifully a longtime marriage between two very different people, the highs and lows and in-betweens, without resorting to cheap plays for readers’ sympathies. Even serious matters that could, in the wrong hands, be maudlin are deftly and lightly handled. Nicholls’ previous book, One Day, was a good one, but it did resort to a big bang of a twist that could be seen as a nasty trick by the writer. Here, however, the story plays out naturally and is balanced wonderfully. There are laugh-out-loud moments that gave me no choice but to read them aloud to whoever was near and descriptive passages that made me in awe of Nicholls’ cleverness. I can’t say enough about how well written this book is. It’s not clean reading, though: I rated it High for strong language on Rated Reads.

Nonfiction

Body of Truth, by Harriet Brown: I have not yet posted a review of this on Rated Reads, but it’s coming soon. I’m also hoping to write a nice in-depth analysis on here in coming days. It’s that important. Brown shares what she’s learned in a decade of examining research on weight, obesity, eating disorders, etc., as well as from interviewing hundreds of women and scientists. The reality is this: our society is completely obsessed with weight. And though the media and doctors tend to go on certain “truths” as givens, those are not necessarily true or even based on solid research. Weight is a very complex matter, and we still know far too little about how best to regulate it. We certainly know far too little about how to help people lose weight and keep it off “for good.”

A Path Appears: Transforming Lives, Creating Opportunity, by Nicholas Kristof and Sheryl WuDunn: Husband-and-wife writing team Kristof and WuDunn explore ways that we can all make a difference by donating our time, talents or resources to help others in this world. Even a little helps. They share inspiring stories and then tell readers specifically how to make our money or time really count. I was galvanized by this terrific book. It’s simply inspiring, but it’s also practical and addresses concerns and problems with charities even as it shares solid advice on how to tailor your giving to your own interests and capacities. I rated it Mild on Rated Reads.

Smoke Gets in Your Eyes: And Other Lessons from the Crematory, by Caitlin Doughty: If you are a fan of Mary Roach’s fascinating book on what happens to our bodies after death, Stiff, you are likely to appreciate Caitlin Doughty’s book focusing mostly on the aspect of cremation. While the book is informative and curiosity-slaking while also liberally sprinkled with dry wit and gallows humor, it’s also a reminder that Americans today are far removed from death. And this is much of Doughty’s point: after spending about a year working at a crematorium in Oakland, California, she then decided to pursue the career and attend mortuary school. The experiences served to incite in her a passion for helping people in our culture reacquaint themselves with death. Rather than fearing aging and death and dead bodies and shoving all we find distasteful off onto professionals who work behind a screen, we would be better served mentally and emotionally if we had more to do with the whole process. I rated it High for language on Rated Reads.

Let’s stop making ‘fat’ a bad word

It occurred to me yesterday that I don’t have to use “fat” as an adjective for myself. No one does. It’s another label, and while labels are necessary for products on a shelf, they are dangerous for people. (How about this?: “CAUTION: This label is toxic for your emotional health.”)

We don’t say someone “is cancerous,” just that they “have cancer.” We are striving to say someone “has Down syndrome” (or some other disability) rather than “is a Down syndrome person.” Because that label does not by any stretch describe the whole person.

So I am not fat. I have fat on my body. Right now, I have more fat than I’d like to, because I’m uncomfortable, and part of the reason I have more fat than I’d like is that I’ve been resorting to emotional eating for a few months, and the quality of some of those foods (sugary) is making my cholesterol a bit higher than I’d like. And those are the facts.

The problem with words is that they often become loaded with associated meanings that weigh them down far more than their original, “true” meaning. Some words even become so weighed down with other associations that they change meaning entirely. This happened with the word “gay.” No longer do we even use that to mean “happy or lively.” We only use it to portray someone as homosexual.

What meanings have become tied to the word “fat”? I’d like to offer these: ugly, disgusting, lazy, shameful, embarrassing, gluttonous, gross. I’m sure you can come up with many more, and they’re all negative. What’s happened is that there is a stigma attached to the word “fat,” and that stigma, rather than “helping” obese people to get healthier through diet and/or exercise, etc. (and that’s a WHOLE OTHER topic entirely), is actually hurting us all. The stigma, the shame and embarrassment of being labeled “fat,” is actually making it even harder for those who would like to make a change in their health to start an exercise program or change a few bad habits in their diets. Shame doesn’t motivate very well or for very long. Researchers Lexie and Lindsay Kite at Beauty Redefined put it this way:

(R)ampant self-loathing, which can be partially attributed to women’s self-comparisons to unrealistic and unattainable body ideals in mass media, may very well encourage women to give up on achieving healthy body weights altogether due to the perception that “healthy” or “average” is unreachable. Studies help to confirm this idea.

It’s actually true that the better you feel about your (whole) self — including your body — the more motivated you are to take care of it in every way. But if you feel shame and all those bad words associated in our culture with “fat,” the less motivated you will be to take care of yourself.

So can we shift the stigma, remove it altogether? Can we snip the associations tied to the word “fat”? It’s going to take some hard work on everyone’s part, but it is possible. Because what we’re “doing” right now — shaming the majority of our population that’s deemed to be overweight — isn’t working. It isn’t working to make anyone feel good about themselves and it isn’t working to get more people exercising, which is truly the goal. Losing weight isn’t really the “magic bullet” we think it is, but more and more we’re learning that being fit is what really counts.

Let’s take the first step toward a healthier and happier society and cut the “fat” talk right now.

Just don’t say ‘if you just…’

Ever had a problem; been frustrated, angry or a little depressed; felt stuck? Ever had someone tell you, “Well, if you just did this ______, you’d be fine?”

I’ve had people say that to me. And it shuts me up. It doesn’t help me, but it stops me from talking to those people. I don’t know if I’ve ever said it to someone else; I hope I haven’t. I know I’ve thought it. But at least for a long while now, I’ve known better than to say it out loud. And I’ve tried to remind myself of the truth:

Any one of us can have problems and challenges that, compared with someone else, somewhere, can look tiny, easily surmountable. Sometimes it’s helpful to realize others have it worse. If we look at our lives with appreciation and gratitude for the good things we have, it can help. But usually, trying to tell ourselves logically (or have someone else “helpfully” do so) that our problems shouldn’t be such a big deal does squat for our feelings.

Here’s why: we are allowed to feel how we feel. We’re meant to feel. We’re meant to have feelings in response to life situations, whether they’re kind of everyday things or unusual things. We’re meant to have all kinds of feelings all over the spectrum of emotion. And those feelings include “bad” ones. We’re meant to just feel those feelings. And what usually happens is once we allow ourselves to feel them, really feel them, we can move on to other feelings about other life events.

The problem is when we stunt that natural process by telling ourselves we shouldn’t be feeling “so bad” or by having someone else tell us so. It stops us from moving through the feelings, talking or thinking through the ideas and emotions.

Same applies to things we could or should be doing or doing better, not just what we’re feeling. Likely we’re comparing something we’re just naturally not so good at with something that really is easy for someone else, so we feel inadequate. Or we could compare something that’s easy for us with something someone else finds more challenging. And we say those dreaded words: “Just do ___.”

We all not only have a complex mix of weaknesses, strengths, natural talents and acquired skills, but we are at different stages in life. Something that was hard for us 20 years ago might be much easier now. Ditto for those around us. And something that was easy for us a year ago might be harder now because our circumstances are more challenging in other areas or we’re struggling with events that are zapping our emotional strength.

For me, I’m finding that I am feeling a general sadness in one layer of myself/my life because my oldest daughter got married a few weeks ago and moved out. But I hate to say anything to anyone because it just “seems silly.” She lives only an hour’s drive away and we can talk and visit. Every other parent my age has already had children go off to college or serve as missionaries for our church, during which time they’re gone for a solid 18 or 24 months and only generally in contact via email or letter once a week. So I feel ridiculous saying out loud that I’m grieving a little over the “loss” in a way of my first, amazing child. But it does make me sad she’s not around all the time anymore. I miss the daily interaction and talks and jokes and hugs and smiles and everything that was our relationship while I was raising her. Things are changing, have changed. It’s real to me. But I don’t want to say anything to anyone else for fear of being compared, of essentially having my feelings belittled because their “loss” is bigger. Their child is across the country or across the world … or something “bigger.”

I also find that I feel down on myself because I have generally been doing well with eating healthy, cutting out sugar and a lot of carbs, this past 10 months or so. But the past month, since right before my daughter’s wedding and since, I just haven’t had it in me to “diet” properly. I’ve been eating junk, and lots of it, and I feel physically yucky. I feel bad because I had done so well. But I also realize that circumstances are different: I’m “recovering” from all the work and stress of preparing for my daughter’s wedding; my kids are now out of school for the summer and my “alone time” is a lot less; I’m adjusting to the change of our family dynamics, and I’m trying to “play catch-up” for some work and things that got put on hold with all I did for the wedding (because I am not just an awesome mom but very capable in planning things and organizing, and the wedding was awesome too). In short, it takes a lot of work for ME to eat well. And even though I feel yucky physically and would really like to feel better, I have to have the emotional and mental energy to focus on taking care of myself, truly properly. Others might say (and heaven knows plenty of “professionals” and bloggers say) “just do it.” Just stop eating sweets. Just stop emotional eating. Right now, for me, it’s akin to saying, “Just stop smoking. It’s so easy.” I’ve never smoked, but I have certainly heard how hard it is to stop.

I’m trying to allow myself to feel, to validate my own feelings. I’m talking to a few trusted friends who are kind enough to listen and validate as well. I’m also trying to allow myself not to take it too hard that I’ve gained a few pounds and am having a hard time with the junk food. Because I also know that I’ll be fine soon enough and will get back to where I should be. If I’m not there at this very moment, today, it’s OK. I will be soon. And that’ll be OK.

In short, I’m giving myself permission to feel, to not be “my best.” And I strive to do that for others. When they talk about feelings or issues they’re struggling with, I know that even if they sound “easy” for me, they’re not easy for them. I nod, I listen, I hug. I say, to them and to myself, “That is hard. I’m sorry you’re going through that. I love you and care about you.” And it’s true, and that’s really all it takes.

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.

I’ll never have a thigh gap, but I am experiencing a big gap between ideals and reality

You know when you dream about eating something off-diet and demanding of some complete (thin) strangers walking by, “Do you ever eat?!”, you’re self-conscious (and frustrated) about your weight.

I’m half-proud, half-embarrassed for myself that I embarked on a strict diet last week, mainly because, yes, I want to look better. And I want it to happen fast. Here’s the thing: I have felt very self-conscious about my weight in photos of late, and I have several big events coming up for which I’ll be in numerous photographs, and I don’t want to look fat.

Yep, there it is.

Yep, my self-image is pretty distorted right now.

As much as I talk about self-image and how bad our society is about focusing on looks, whether it’s regarding weight, age, or relative size of body parts, I still struggle with it myself. Sometimes not so much, other times mightily. As I most recently mentioned to my therapist, “I feel horrible about how I look.” Her response: “Right now you’re very stressed and not feeling good about yourself in lots of other ways, so that’s not surprising.” Meaning, essentially, try not to worry about it; it’ll pass when you manage to process everything else that’s had you down.

So I kind of feel like a hypocrite when I’m urging everyone, male and female, to be more aware of how media and society all around us dose us liberally and continually with the religion of thinness and image, of airbrushed (impossible-to-achieve) perfection, and I am struggling with it so much still.

It’s complicated by the matter of health: when I’m stressed, I eat sweets. I overeat. That’s simply not good for my body, and that’s important. So I do also want to work on that. I want to break my physical and emotional addiction to sugar and my reliance on food as a crutch. But I would like to figure out how to separate that out from my worries about how those habits affect my LOOKS.

Here’s another thing: plenty of people out there have far worse eating habits than I do, but they’re thin. So their health might be in need of improvement, but they either don’t worry about it, or they don’t worry about others seeing them as fat. Because don’t we tend to judge people who are overweight? We automatically think, They need to eat less. They need to have better self-control. They need to take better care of themselves. But health and thinness are not always directly correlated.

That’s not to say I excuse myself for slipping into bad habits. I can do better by my body sometimes. But our society judges on appearance, and I judge myself. I have a lifetime of negative messages to overcome. And that simply makes it much more difficult to just take care of myself the way I should because I’m devoting so much emotional energy to the image part of the equation, which is NOT the important part; overall health is.

I have had a lot to deal with the past months, the past year, with a few breaks in the onslaught of expectations, responsibilities, and struggles to catch my breath. I anticipate having some breaks to catch my breath and focus more accurately on taking care of my health — emotional, mental, spiritual and physical — fairly soon, but in the meantime, I’m just getting through it as well as I can.

And dieting. Like I said, I’m a little embarrassed because I’m doing it almost exclusively for the reward of looking better in pictures. It’s not the example I’d like to set but I’m doing it anyway, just because right now so much has beaten me down I don’t feel good about myself in many ways; I feel weak and run-down and just not up to snuff. I feel like I’m letting people down left and right because I simply can’t do everything everyone needs me to do at all times. So that feeling extends to how I look.

I’m going to keep working on my self-image, my self-esteem, the ways I look at myself and talk to myself. I’m going to do better. Just forgive me the lapses right now in my actions and how they don’t match my ideals. It’s a process for me, and it’s a process for us all as individuals and as a society. For me, this topic mixes my mental health awareness-raising with my awareness-raising about society and image. The intersection is a little delicate, and I’m navigating it as well as I can in this tricky time. I hope I’m making progress in it all because all I can do is just hope I’m slowly doing better. I’m going to just try to remember to pat myself on the back for what I’m doing better: life isn’t about improving overnight. It’s a journey with all kinds of intertwined paths leading to a place where we’re our best selves in all aspects.