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Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.

That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.

But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.

And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)

In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.

And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.

In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.

We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.

That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.

It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.

So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.

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?

pill-bottle_21_G6So 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.

Purple pain

With my teen years firmly set in the ’80s, Prince was firmly set in my musical consciousness. His songs were fun, catchy, danceable and clear indicators of his genius.

But his music and persona have become part of the fabric of my family’s life, as it’s turned out, so his death today comes as a shock.

My husband, who has fantastic taste in a variety of music, and dance skills to match, has a large stack of Prince’s CDs. And in the early days of our acquaintance (in a church congregation at college, surprisingly enough), his lip-sync and dance performance of “When Doves Cry,” complete with eyeliner, purple jacket and white ruffled blouse, for a talent show gave me the notion that he was something special. Maybe that’s why I said yes when he asked me out a month later.

228122_10150184386647400_5199462_nFive years ago, when our oldest was a teen, it was announced that Prince was adding a last-minute concert in Fresno, near us. As soon as tickets were available, I pounced. I bought them for me and my husband and my teen. And we partied like it was 1999 (only it was 2011).

Just last year, when that oldest daughter got married, we knew we had to have a special father-daughter dance at the reception. It would be something that reflected US. We deliberated, brainstormed, and came up with something perfect. And it included Prince, naturally. I thought it was awesome.

The Prince is dead. Long live the Prince.

Following up to my last post about Harriet Brown’s Body of Truth, here’s another reminder of our society’s last acceptable prejudice. Racism still exists, but our society no longer will accept it, and we call it out whenever it appears in the news or the cultural consciousness. Our treatment of and attitude toward homosexuals is something that’s changing and is addressed frequently. Debate over policies is still complex, but how we treat individuals should be pretty clear: just be kind. Don’t name-call. Don’t lump into a category. Don’t assume.

But we’re still in the very early phases of ending the name-calling and shaming over fat. About once a week, it seems, some celebrity or other makes assumptions and puts their foot in their mouth about people who are overweight. Cheryl Tiegs stupidly assumed a couple of things in February about model Ashley Graham: One, that Graham isn’t healthy. Two, she assumed her waist size was 35 inches or more, giving her the basis for saying Graham can’t be healthy.

Here’s what happened: Graham’s waist size was revealed to be 29.5 inches. It’s perfectly within the range of what experts say is healthy (although, let’s be real … doctors really know far too little about weight and health, as Brown writes in Body of Truth, for one). And Graham works out regularly. She seems to be taking care of herself. As she said to the Daily Mail, “There are too many people thinking they can look at a girl my size and say that we are unhealthy. You can’t, only my doctor can!” (I’m guessing she’s lucky enough to have a doctor who sees the big picture of health and hasn’t pushed her to lose weight.)

And the fat-shaming of today comes from Australia, where a fitness expert just assumes that all overweight people must be unhappy. One, it is possible to be overweight and happy, and two, her remarks and attitude likely contribute to people who are overweight feeling dissatisfied with themselves simply because of their size. It’s been shown time and time again that making someone feel bad about themselves, guilty, shameful, etc., will NOT lead to them taking steps to take better care of themselves, such as incorporating some better eating habits and exercising regularly. It may motivate briefly, but in the long haul, they’ll just give up and say it’s impossible. The best motivation to help someone truly take care of themselves for life is to help them feel they are worthwhile as people; therefore, they deserve to take the time and energy to take care of their physical bodies.

One thing that needs to become more common knowledge among doctors and all of us is that fitness is a huge indicator of health. More people should get out and exercise more. Yes. But there are plenty of people who exercise regularly who are not thin. (And on the flip side, there are plenty of skinny people who have never exercised, and on top of that, they eat food that no one would call healthy. But they get a pass in others’ eyes because, hey, they APPEAR healthy, since our society still only equates health with thinness.) And we should be working to get more people fit. But it doesn’t need to be in pursuit of being thin. It needs to be fitness for its own sake.

Let’s just stop the fat-shaming. Let’s stop assuming overweight means miserable and unhealthy. Thinness does NOT automatically = healthy, and fatness does NOT automatically = unhealthy. Fat people are not necessarily unhappy, lazy, or unmotivated. They are people. And how do we treat people? With kindness. As whole, worthwhile individuals.

 

body of truthI’ve decided I’m going to make reading this book a once-a-year activity. Body of Truth is just that helpful. When I read it a year ago before it was even published, I dog-eared pages as I devoured it in just a day or two. I made my husband read it. THIS, this, is what everyone needs to know. I read it again this week in a day, dog-eared more pages, and considered making my husband read it again.

Read my review of the book on Rated Reads.

Now, I was able to keep my review to a reasonable length, but I’m going to write more about the insights I gained by reading Harriet Brown’s book. And I’ll have to split up the info into a few posts so it won’t get weighed down (ha ha). Today I’m just going to address the damage that is done by dieting. And let me tell you, that is one of the takeaways of this book that has me the most furious.

I never considered myself a dieter until the past 7 years or so. I noticed myself gaining when I was nearing 40. But I had actually dieted when I was about 12 by reducing a bit what I ate and not eating desserts. I didn’t keep track of pounds, just slimmed a little of “baby fat,” you could say. And then each time after my three pregnancies I breast-fed, counted calories (stuck to 1800 or so), and kept up my regular exercise. I got back down and a little bit more and was looking nicely trim at 33. I kept it up until, yeah, almost the 40s. Then I saw 10 pounds creep on and got a bit panicked (ha!). Then I happened to move to a new state and put on another 10 pounds, then another 10, then another 10. All of a sudden, I was a lot heavier and was feeling much different than I had before as generally an average-weight, trim-ish person. I dieted first by just really counting calories (and going hungry often) and lost 30, but it only held for a year or maybe two. It came back on, and then I started looking at other options. I did the hCG diet (yes, I know, I never DREAMED I’d be the person to do something drastic like that), but it worked and I at least lost almost 20 pounds and felt a lot better really quickly. That crept back on, and I did it again a year or so later. A couple of years ago, my best friend started doing Atkins, so I tried it. It worked and I did well enough to lose maybe 20 or 25 pounds and feel it was worth the work and sacrifice. My daughter got married, then, last year, and all bets were off. I ate, and I ate, and I ate. I was depressed and stressed and just went straight to food. And what do you know, I am now by far the heaviest I’ve ever been. I went back on Atkins for a few weeks in the fall, then something crazy happened, and then I went back on it this last month, then my grandma died. And I am 20 pounds heavier than my heaviest weight ever before.

So not counting the post-pregnancy “getting back to pre-pregnancy weight” work, I have dieted, lost and gained, at least four main times, plus a few more little times, in the past 8 years. I have been successful. I have been tough. I have focused. And then I’ve either gone back to semi-normal eating (not being hungry) and gained back, or I’ve had some eat-a-lot periods. And what do you know, I’m completely normal. Studies show very low rates of “long-term” success, which is at most watched over 5 years, and almost nothing for rates past that time period (3 years is really even the limit of most “long-term” studies). Evidence also shows that not only do people who diet tend to gain back what they lost, but they gain more on top of that.

So if I had never dieted, I’d most likely just be at my previous “heaviest,” but not the 20 pounds more than that that I am now. I might even be 10 or more pounds below that. And I’d have saved myself a lot of unnecessary work, focus and energy that could have gone to something more productive. I don’t know if you’ve been in this situation or not (likelihood is many of you have been), but this realization absolutely OUTRAGES me.

Brown writes this:

(An) oft-repeated lie about weight and health is that dieting makes us thinner and healthier. At the very least, we consider dieting benign, something that can’t hurt us even if it doesn’t really help. But the truth is, dieting is actually harmful for many of us for all sorts of reasons. And it doesn’t make most of us thinner or healthier. On the contrary.

And she says this: a 2007 investigation (as one example) confirmed that diets don’t work. “The mind-boggling element here is that we’ve known diets don’t work for a long time, and so has the medical establishment.” But still society at large, doctors, individuals … we all think they can work if people just are motivated enough, have enough willpower, work hard enough. And that big fat lie is causing us health problems. Just think: doctors who are all encouraging patients to lose weight may very well be making their patients’ health problems WORSE.

Here are some sobering points Brown tells us:

  • “Dieting nearly always makes people heavier over time. In one study of Finnish twins, the more diets people went on, the higher their risk of becoming overweight and the faster they gained weight later in life.”
  • “Dieters tend to have higher levels of cortisol, sometimes called ‘the stress hormone,’ and free fatty acids, and dieters tend to exhibit diminished executive function, (‘strained bandwidth’), maybe because using so much mental energy thinking, worrying, and negotiating about food choices leaves them too distracted to think about much else” — which in turn actually causes us to gain more weight.
  • Dieting actually has been shown in studies to lead to binge eating. It’s not just psychological, either; physiology on various levels causes us to eat more after dieting, reversing all our work (brain circuitry even changes!).
  • ”An ever-growing body of research suggests that weight cycling, or yo-yo dieting, correlates with higher levels of heart disease, impaired immune function, cardiometabolic risk, insulin resistance, triglycerides, hypertension, and abdominal fat accumulation.”
  • Studies have “found correlations between weight cycling and disordered eating, higher stress, lower well-being, and less confidence about food and eating. In other words, the more loops of the yo-yo you go around, the worse you feel about your weight, your eating, your very self.”
  • Each loop of the cycle then is harder. It’s tougher to drop the weight every go-round. Dieting changes metabolism. “People who have intentionally lost weight generally use about 15 percent fewer calories than non-dieters to perform exactly the same activities, which means they gain weight eating fewer calories than non-dieters.” As one research professor told Brown, “We know there’s some sort of derangement of the metabolic pathways, and that has a cascade effect on everything from the hormones involved with obesity to hunger.”

So people who feel fat or have been told they’re fat and need to lose weight feel “incredible shame.” Our whole culture reinforces that. Doctors reinforce that. And it’s not helping anyone. It’s not helping health; it’s not making anyone motivated; it’s not making us feel good; it’s a wicked prejudice that is still allowed. Feeling the outrage yet?

In the next few blog posts, I’ll focus on some of these last ideas and more.

My last blog post was about my goal to take better care of my health, with a multi-pronged approach. I did well for a few weeks. And then I didn’t.

The catalyst for getting completely foiled, at least for the past month, was my grandmother’s death. It was expected; she was 99, and my family and I had had a good visit with her a few months before, as we knew she was declining after a long and full life. But the day she died, I got drained, emotionally and physically, and I just had to step out of the Atkins diet that seems to work for me, at least scale-wise.

Since then, I’ve wanted to get back into focusing on my eating and doing all the other things necessary to take better care of my whole self. How well have I done? Crappy. That’s what.

Here’s the deal: I’m a mom. I have a husband and four daughters, and they are all in vital stages of their lives. Parenting them now is in a way more demanding than it was when they were little; then it was mainly sleep deprivation and not being able to catch much alone time. Life was just a lot simpler then. Now, there’s so much more of a mental game to it than just being the taxi driver. I’m there. I’m on call. I’m helping figure out all kinds of important things for the next week, the next month, the next year: their LIVES. Even my oldest, who is married and “on her own,” still needs me, and I am still there for her whenever I can be. Even more, our relationship has a new dynamic and dimension, one we’re still trying to adjust to, I think, almost a year on.

Add to my momhood my personal leaning toward taking care of other people all the time, and my own self gets left in the dust. This past month or so has been a pressure-cooker, a meat-grinder, of calendaring and coordinating activities and appointments; responsibilities, obligations, big questions, long to-do lists, and hardly having a moment to breathe and just think about myself. Granted, I know from sad experience (over and over and over again) that is a recipe for disaster, but after all these years, I’m still trying to figure out how to cut the recipe in half or something.

So I sit here again and contemplate how to take care of myself physically: eat better overall, less sugar, more fruits and vegetables (which I do really love and eat probably more of than the average person, but still)… all that jazz. Figure out how to decrease emotional eating (THAT’s a biggie). Mix up my exercise (I’ve been dedicated to working out for 25-plus years and I really enjoy it and how it makes me feel), do some more fun and different things. The pressure cooker of the past month or two is likely to be turned down a few notches for the near future. Maybe I can make some strides on me.

What I know is this: appropriate self-care can take a lifetime of practice.

As much as I am striving to live a life less focused on appearance (mine or anyone else’s), I am finding myself in a position where I absolutely must diet. And yes, I’d like to look better. Argh. That’s out there. But I have some reasons for losing weight that go beyond how I look. One is just sheer expedience: my weight is the highest it’s ever been (by 15 pounds) and I have 1 pair of pants to wear. I’d really like to get back to wearing my clothes, and I’m just shooting for the larger sizes to begin with.

Then there’s health. I know that my emotional eating of too much sugar is simply bad for me. It’s bad for my cholesterol, which is a family history issue, and it’s bad for other facets of my health. As I get older and my children get older, it strikes me that I’d really like to be sure to be around for all the good stuff that’s coming: more graduations, more marriages, grandchildren. I’ve invested my whole self in parenting, and those joyous events that happen later on down the line are the icing on the cake (do we have metaphors that don’t involve sweets?).

I also know I just feel better all-around when I’m eating a healthier diet. It’s nice to have more energy and to not feel bloated.

my plan for weight lossBut since many diets fail in the long term, my goal right now is to work on the whole me, not just a number on a scale. After my oldest daughter’s wedding last year, I fell into a bit of a depression. I was grieving her “loss” (much as it was joyous and we gained so much, it really was a loss for her to move out permanently and to be “someone else’s” now too). With other things that were going on in my life, it was simply easiest to fall back into well-entrenched habits of eating to soothe myself. Now, I am going to work on more effective ways of really taking care of me. I plan to write in my journal regularly (lost that habit a long time ago: thanks, parenting), try some new fun physical activities and even make my weight loss a matter of prayer. I might even include some help from 12-step programs.

I’m excited about getting into this. I’m also scared and nervous. It’s beyond difficult to drop a habit that could even be called an addiction. But this has to happen. Wish me luck.