I met Martee through the UCSD Eating Disorders Center and she is a special FB friend. Martee's soul and her soul-related musings are just too, well, soulful, not to share. Martee is a behind-the-camera mom and a philosopher and these are her people.
They went on a big road trip which I have loved following on FB. Martee knows how to capture the spirt of a big, messy, loving family.
I have gotten so much of what I wanted out of this road trip. Stick your family in the car and your family is stuck with you! When we moved to CA and the kids didn't know anyone, they became a pack. Always together (except Addy at the hospital). Always pals. Everything was from within. Back in Decatur, our Home, everyone has friends. You know, a lovely childhood full of social ties. Beautiful, really and the goal. We raise them to be kind. The whole point is pretty much relationships. In Decatur, my pack is scattered and happy for the most part, just being busy kids. The month long road trip reunites the pack. I grew up going to summer camp and adversity or homesickness, or living without air conditioning, or swimming in mucky water is a rite of passage. I love camp. I love the road trip. But not everyone does. I hear George wrestling with his sleeping bag right now. It is not easy to sleep in strange places. It isn't easy to go with the flow. Some of my pack needs stability, predictability, schedules, H&M, sand free/bug free accommodations, and wifi. No one signed up for this camp/road trip. It was mandatory. They are awesome wicked pissah sports but anxiety and depression can creep up. In the spirit of being a light shiner, mental illness follows you on vacation, too. And I am so grateful that my family is willing to brave any struggle they have and be such hard workers- fighting off the moments when the anxiety is bigger than the hope. I'm not sure of the best ways to spend these fleeting summers of childhood. With my two oldest being 18 and 17, this might be the last extended crazy mama road trip and I'm glad I did it. It is a lot more fun than staying home and grounding your teenagers for underage who knows what. But no matter what, I can't freeze time. I can't keep them in the van forever.
So I got this Mother's Day present . . . and I realized it could be not just a present for me, but other mothers/fathers/carers out there. When we began Family Based Treatment (FBT) for our daughter's eating disorder (we were lucky to have a doc who was up to date on evidence-based treatment and sent us straightaway to the UCSD Center for Eating Disorders Treatment and Research), my greatest concern was what would happen to my relationship with my daughter. This is a common refrain and I also hear about clinicians warning parents about the destructive potential of FBT and doubting the ability of most families do do FBT.*
My daughter and I had a close, loving relationship throughout her childhood. She was not a perfect child, but she was definitely a good kid. We had normal teen/mother discord, but at the point of her descent into anorexia, she was a self-sufficient, mature, smart young woman of 17 and was already "raised." It was all over but the check-writing her father and I thought.
We were wrong as it turns out.
FBT requires of parents that they become, in essence, a caricature of all things popular culture tells us causes eating disorders.
Things I had to do to help save my daughter's life included being controlling about her food and activity, monitoring her both physically and online, being willing to have her taken by the police for a psych hold over meal refusal (we got close, but it never happened) and being present in her life to a degree not seen since she was two years old. It was not fun for either of us. Not even the teensiest little bit.
Things my daughter's eating disorder (That Bitch Anorexia in our home) said and did during the time I was doing the above? Let me just say that when I relayed the day's post-mortem to my husband (working out of state at the time of refeeding), this clip often informed my reporting--"And then her head spun around and venom spewed from her mouth." There's a reason parents and sufferers often externalize the psychosis of eating disorder behavior as "The Beast."
Now for the good part.
FBT worked for us. We embraced the counterintuitive "food police" nature of the treatment. We accepted the idea that this was short term pain for long term gain. We trusted the research that showed FBT to be the most-effective treatment for adolescents with anorexia. We found hope in seeing others further down the path than us and from the light we saw in their children's eyes. We were cruel to be kind, in the right measure.
We leaned in. We pushed when we were told (by her/ED) to back off. Even after her initial recovery, we put a safety net in place that, if you don't understand eating disorders, made it sound like we didn't trust our own adult child (we do, we just recognized the tentacle-like nature of an ED and wanted to help her help herself--which she did). We chose to shape the path so that we could choose recovery for her in the event she was unable to choose it for herself. We were hard-asses of the first degree.
Now for the great part.
That relationship worry so many of us have? For many of us the intense battles between parent and child during refeeding didn't ruin our relationships with our children; in fact, they made the relationships closer and stronger. Fighting for your kid's life--first without their help and then, after their brain is no longer malnourished, alongside him/her, can be a powerfully bonding and affirming experience.
Fighting Stigmatizing of EDs: Anorexia is NOT a style statement!
Me and my girl, summer 2014
This is our story and it is also bigger than just our story--because it also the story of so many other families who choose FBT to treat their child's eating disorder. To me, FBT shares common ground with parents giving insulin injections to their diabetic children and with parents of children who have cystic fibrosis and requite at-home percussion therapy and with the many parents who make myriad medical decisions for their kids every day that may require both the family and child to endure unpleasant times in the service of life-saving treatment.
To my baby girl, you of the twinkling eyes, gorgeous smile and all-over glow seen above--you are rocking life at every level and to have had a part in your metamorphosis from seriously ill to physically and mentally healthy was my honor, my privilege and my purpose as your mother. XOXOXOXOXOXOXO.
*FBT doesn't work for everyone; in fact, there is as yet no one treatment for anorexia that does. There are valid reasons why FBT isn't the best choice for some families and many parents fight just as hard as I did, using other treatment models. That said, the resistance to FBT by clinicians is puzzling in light of the fact there is no treatment that has better outcomes or works for a larger swath of people. Not educating patients and families on ALL treatment approaches, modalities and the evidence for them, is malpractice as far as I am concerned.
So I went to this amazing conference in Boston (International Conference on Eating Disorders) and I have about 3,500 words pending about it in other spaces that talk about the important stuff.
This story is not the story of what I learned and who I met and the amazing work that we are doing.
This is the story of how I became a lead player in an insane Groundhog-Day-esque encounter and learned firsthand what a Masshole is.
On Wednesday morning I sat in the reception are of the upscale Marriott Copley Plaza, waiting for my compatriots to arrive, tethered to an outlet because my iPhone decided that a cross-country trip and a few days in a strange city was a great time to begin draining the battery at lightning speed.
I was approached by an androgynous woman I initially mistook for a man. She definitely picked the wrong target for her panhandler spiel (I will buy food cards if I am moved by someone's plight; I don't do cash ever) of: "My kids and I became homeless today and a room at the Y is $63 a night and I've got $8--can you spare a few bucks." I smiled politely and said "Sorry."
On Thursday night I sat in the lounge area of the (still upscale with a professional, business vibe) sharing drinks, appetizers and energy with three of my fellow advocates and good friends.
The woman from the lobby approached our table and delivered the aforementioned spiel to which I replied for the table, "Sorry, we are on cards." I would not have been shocked had she whipped out a card reader, but she did not. As she walked away, I, thinking she was out of hearing range leaned over and shared with my friends, "I heard that exact same story yesterday in the lobby." My intended meaning being, "Hmmmm, she JUST became homeless TODAY, when she told me yesterday she just JUST became homeless TODAY."
Whether she wasn't as far away as I thought, or my voice was louder than I intended or whether perhaps she just has amazing hearing, she heard me.
And wheeled around.
And proceeded to deliver, at shockingly high volume, the following diatribe in a classic Boston Southie accident. She would have been the tomboy sister in the movie "The Fighter."
"You fahkin' bitch! Who the fahk do you fahkin' think you are? You don't have a fahkin' clue! Fahk you ya' fahking bitch! (Chorus repeated several times before the concluding line). And why don't you get a fahkin' dress that isn't three sizes too fahkin' small ya' fahkin' bitch."
Let's let that sit for a moment . . .
I was body-shamed for my weight and style choice at an eating disorder convention.
So that was fun.
But hey, a blogger is always a little happy about any encounter that makes a great anecdote.
And the bar manager did tell me that in his opinion I looked really good.
The fahkin' outfit I was wearing
Two encounters does not, however, a Groundhog Day-esque experience make, amiright?!
I am right.
Sunday morning as I walked to the lounge, with a friend who had been there for incident #2 and an acquaintance from New Zealand, we were approached by my apparent stalker who opened with "My kids and I became homeless today and a room at the Y . . . "
That's as far as she got before registering that the "Are you motherfahking kidding me?!" expression on my face was a result of our previous encounter. I said not one word but began to walk briskly to the nearby hostess stand while casting my eyes about for security. While I did that, she began, once again, to involve the entire hotel in our little tableau by unleashing the following torrent of anger and profanity at me.
"You fahkin' bitch! I will fahkin' kick your fahkin' ass right fahkin' hear and fahkin' now! I will fahkin' beat you down right. fahkin'. here you fahkin' bitch!" (Repeat x 5 with little variety).
(The story of how security was nowhere to be found and how the hotel employees at the hostess stand were nonplussed by this scene to a rather shocking degree and how I was charged for the drink I ordered when the waiter checked to see if I was okay after the 2nd verbal attack and how the person who handles Twitter for Marriott and I are bffs now and what the corporate response to this was is a different story for another time).
Not only does this California girl know exactly what a Masshole is, she will be fahkin' happy to never meet another one.
For fahkin' realz.
It may be a fahkin' while before I watch Good Will Hunting, The Town or The Departed again. Just fahkin' sayin'.
I often get pitches to post on my blog. I've made some great relationships through social media so I always give a quick peruse to anything that has my name right. If you call me Jenna and say you've been reading and love my blog, you're a liar. It's actually a decent system.
I get far fewer pitches and I accept even fewer of those in the last couple of years; this post was written because the folks at Oscar, an New York based health insurance company, had actually read my blog, and were interested in my take on Family Wellness as part of Family Wellness Month; they have a focus on using technology in a variety of ways to support the health and wellness of their insured. Wearing my advocacy hat for a moment--I think it's time for the eating disorder community to reset our relationships with insurers--with a mutual goal of saving us lives and them money. Early diagnosis and prompt aggressive appropriate level-of-care with family training and support saves lives and money.
My first message about family wellness and healthy living is to understand that thin doesn't automatically equal healthy and fat doesn't automatically equal unhealthy. Confused? Poodle Science explains it well.
Internalizing that message will set you on the path to Family Wellness and increased happiness and contentment.
My other recommendations for Family Wellness?
Limit screen time. Do this from day one and do not fall prey to the siren song of a moment's peace. Now, I am not saying don't have TVs or computers or iPads or phones--I'm not a Luddite and I don't want your kids to be either (unless you do, in which case it's unlikely you are reading this blog).
I was lucky to be able to raise my kids in a cul-de-sac in a lovely suburban San Diego community. I had weather on my side. The families around us had the same values regarding childhoods spent in the great outdoors. Plus, I was a stay-at-home-mom. It was clearly a supportive environment in which to stand firm of limited screen time and I recognize my privilege.
And I would still encourage everyone to do their best to do the same on screen time limits.
Two simple rules (one mine, one my neighbor's) made it possible to stay sane(ish) and not have to deal with the dreaded attempted parental wear down (also known as nagging/begging).
Ours was no screens during the week. We recorded shows all week and Sunday night was early dinner and family TV viewing. We had a couple of GameBoys for car rides and as the kids got older we finally got a game system (when our youngest son was about 10) and marathon game sessions on sports-free Saturdays were definitely a thing. Today our four adult children have thanked us for our rules and vowed to do the same (or stricter!).
My neighbor's rule was no TV at all during the school week and no TV during daylight hours on weekends and in the summer.
Another neighbor had no screen restrictions, but the kids were outside with ours all the time anyway so that was a natural limitation there.
Play--with bikes, balls, bats and wheeled contraptions of all type (one year Santa got all the kids in the neighborhood Razor Scooters) was never thought of as exercise and yet movement was constant.
It wasn't just the kids that cavorted either--I play a mean tetherball and game of HORSE. Pickup basketball games with kids on dad's shoulders brought everyone out on summer evenings. Games of catch were a way to stay connected through the teen years.
Nutrition is a hot topic these days and on that my thought is cook at home as much as you can. In the elementary school years I often prepped dinner right after I dropped the kids at school. Don't buy Uncrustables--make your own on Sunday night and put them in the freezer for the dreaded school lunch packing grind. Throw in a cookie or some chips. Probably better not to throw in ten cookies. Hitting fast food occasionally is unlikely to hurt anyone, but seven nights a week not so good. Reserve soda for sit-down restaurants and drink milk or water at home.
Sleep is important; for you and them!
And know that you can do everything "right" and sometimes things will happen anyway--it did for us when our youngest daughter developed anorexia (she is doing fantastically well today). If and when it does, all the above tips will hopefully have you in a place where you have the energy to do what you need to do and the loving relationships that eating together and playing together build. Make sure you put the "Family" in "Family Wellness" and odds are good for things to work out just fine.
I am an admirer of your work and one of a collective of Monkee-like parents who have children just like you; wired differently than “normal.” You characterize it as “born with an extra dose of sensitivity to life’s own brutality and my own nakedness.” We know that what you are referring to is a complex interplay of genetics, biology, brain wiring, temperament and psychosocial influence.
Our Monkee community have all had/have/lost children with eating disorders.
We've had some tough losses lately and I am hoping you will let me channel my grief into EDucating your readers about eating disorders via your blog. People are dying at the rate of 23 per day of treatable illnesses because the causes and treatment of eating disorders are woefully misunderstood in popular culture, society as a whole and even by most of the medical establishment.
What do we need people to know? My elevator speech is this: Eating disorders are serious genetic, biological, brain-based illnesses with a psychosocial component that seems to be tied to temperament. An eating disorder is triggered by a period of negative energy balance that may or may not result in weight loss. Many eating disorders begin with a diet and many do not—a stomach bug, surgery, wisdom teeth removal, training for a race, etc. are all common triggers. Eating disorders are not disorders of choice, vanity or family dysfunction. Eating disorders occur across gender, ethnic and socioeconomic lines, in people of all ages, and appear to have been present in all cultures and throughout history. While co-morbid conditions frequently exist that does not make them causal. Eating disorders are treatable with early, aggressive intervention.
The good news is an explosion of knowledge in the field in the last 10 years is providing incredible hope for early, successful, evidence-based treatment of eating disorders. The bad news is that most people—and I include physicians, nurses and mental health clinicians in this—have no idea about the advances or even the ability to diagnose an eating disorder.
My Monkees are trying to change our corner of the world. We do this by first and foremost supporting and educating parents so they can save the lives of their children—even if they have no access to decent treatment. We mentor parents of those recently diagnosed. We weep with those who have lost children. We strategize with those whose adult children are refusing treatment. We share experiences on 504 plans and treatment centers and co-morbid conditions.
We travel to conferences and we soak up information to share. We help parents locate treatment and challenge insurers and national health systems who don’t consider treatment necessary unless the patient is at a metaphorical Stage 4. We lobby to create change legislatively. We celebrate those who recover.
We work tirelessly and endlessly to raise the alarm that this can and does happen in ALL families—and when it happens in yours you will need the knowledge and resources to fight to save your child’s life.
My personal involvement in all this—the time, energy and thousands of dollars spent annually (thanks to a very supportive spouse who is also a fantastic father) is because things went right with our daughter and I want everyone to have the same opportunity.
Three years ago our pediatrician wasted very little time ruling out other causes for Kinsey's sudden inability to eat many foods. I was able to find information on the internet that told me a huge red flag was a newfound interest in baking and not eating the baked goods. My kitchen looked like the set of Cake Wars and I couldn’t get away from Guy Fieri. Who knew?
On our one emergency room visit the doctor was quite vehement and straightforward in telling me she had anorexia and had I not already had an intake meeting set, he would have convinced me to do so.
We had immediate access to treatment at the Internationally-renowned UCSD Eating Disorder Treatment Center. The final piece was our insurer, Aetna, signing a single-case agreement that limited our annual contribution to $5,000.
Today my daughter is studying at University of New South Wales in Sydney, Australia. She has been in strong recovery for 21 months and continues to follow the advice of a psychiatrist and have regular medical monitoring. Having been through relapse she is strong and sure of what she needs to do to keep living the wonderful life she has built for herself. She is living the life she is meant to with the confidence that results from the hard work of good treatment. She is a Recovery Warrior in work she has done with writing and speaking to parents.
But more important than all of that is that her smile lights up her face and her eyes sparkle with a zest for life.
Too many lives are lost or stunted; it doesn’t have to be that way. Please help us spread the word, Monkee-style.
Sincerely,
Jenn @ Juggling Life
aka JD Ouellette
(also several other names [SMH, long story] but those should suffice).
MVP flew in for the weekend to see a friend himself home from a military deployment. Friday night was our one window for family only time, so with a reservation made we were esconsed at 6 pm at a table at our neighborhood institution pizza place. The decor is horribly out-of-date art combined with sports sponsorship plaques (looking for childhood teams is always fun) and the food is fantastic, the service great, the atmosphere warm and inviting; if we had a restaurant "home" this would be the place. The kids passed many a dinner/team banquet playing with their signature uncooked dough balls . . . good times.
The Grownups were out looking at houses, so we took our time before ordering (pizza that is, we ordered beer right away). We chatted and caught up and looked backwards and looked forwards. We planned trips and life events. The Grownups came and we talked houses and backyards and looked at cell phone pics. We ate antipasto and used forks on pizza made with a thick crust and toppings almost invisible under a thick layer of cheese . We ordered another pitcher. We lingered and we laughed.
And then we took a selfie.
We were never all together in 2014. Starting 2015 right!
During the pre-dinner banter it was noted that Mr. Fix-it had changed his phone screensaver . . . to a recently unearthed photo of me when I was 17. I am not sure who took it because it was clear I took all the other photos on the roll. Possibly Mr. Fix-it took it? Anyway, my first reaction was, "That's not even a good picture of me!"
You can keep the lift in Dirty Dancing or the kiss in The Notebook for romantic moments, I've got this one. Mr. Fix-it said, "Bad picture? What do you mean? This is who you were when I first met you. This picture IS you. I love it."
Circa 1980/81. Odds are that was a Peter Pan collar and there was kilt involved in the rest of the outfit.
Resolved: To lead a more balanced life in 2015 by organizing my time better. Why CAN'T I close my blinds and write for an hour at lunch? I AM sitting in front of a computer. Then it will be eaiser to get my daily exercise in and a few non-cereal dinners. It will be a big year here with a baby and I am going to take up knitting--OMomK makes beautiful things and she is going to teach me. I am sure mine will look more homemade and less Rodeo Drive baby store, but it should be fun.
Our first compilation card: we were never all together. Mr. Fix-it and I were with the kids at all these events: a wedding, water polo tournament, Red Rocks Ampitheater, Grand Canyon and my fantabulous Mod Mod 50th Birthday SURPRISE party.
So far 50 feels fine. Which is good, because one doesn't have a choice. I was momentarily delighted at Grownup Girl's sonogram today (all good so far) and when she was in the bathroom the tech came in and thought I was her. Then she made sure to tell me she sees people of ALL ages, so she never judges. Good to know.
We will go out tonight to friend's for a game night with 3 or 4 couples and good food and drink. And that seems ambitious but worth it. It can be easy to fall into not going out and I think going out is good. We had a blast at a brewery then pizza (with more beer) the other day with our water polo people--so fun to see all the young men. Sunday FunDay needs to happen more often.
Many firsts to happen at work--hiring people! Getting better with spreadsheets and reports. Whouda thunk it? I was going to teach 5th grade when I started the back-to-school journey. What a cool thing to have a record of your life like your blog.
I am off to visit you my blogging friends--for Auld Lang Syne.
I saw this on my FB friend Cathy's profile:
If your 2014 sucked, I hope 2015 is better. If 2014 is great, I wish you more of the same.
This picture is a couple of years old, but it popped up in Google Images when I was searching for a link and I really love it so what the hey.
I decided to gift my poor neglected blog a post. What I have been up to? Had a phenomenal Thanksgiving with MVP and Mandy here (everyone but Danger Boy was home) that was low-key immediate family (including my 21-year old nephew who is living with us) which felt just right. The day before is actually my favorite day because I love the warm camaraderie of the bustling kitchen, although our new tradition of a day-of bike ride and the dreams of a lottery-win-bayside homesunder a sky drawn with cornflower darkening to cerulean has its charms. As do the tables in the sand set with holiday-themed floral arrangements.
I got new running shoes when we visited our local Road Runner outlet and wore them exactly once the Monday before Thanksgiving before falling victim to a chain of maladies that has kept from exercising for almost a month. I think I might be over it. Holding my breath.
Work is insane and fulfilling. My second job is the same. I am working hard with International Eating Disorder Action --we now have a website along with our blog (that's the kind of thing I mostly write these days), Twitter (@IEDACtion) and Facebook group. We are loosely organized to be more adaptable to react quickly than a group like F.E.A.S.T. (which is hands down the number one family resource I recommend); I think we can complement each other and magnify our respective voices.
I am also stoked to be receiving and providing support with a new FB-based parent support group--Eating Disorder Parent Support or EDPS. It's co-ed, well-moderated and for carers only, which is important to me. Once you learn enough to start following the money, you recognize the value of independence from those who profit (irrespective of the good they do) from treating eating disorders. Of course this is not to say there cannot be incredible collaborations, it's just a consideration. I am thrilled to be working with so many smart, passionate people.
Though it seemed an iffy proposition for a bit, we will have a respectable semblance of Christmas here. Thank you Amazon Prime. We are almost tree-only on decorations this year (my 40-year old self is appalled; my 50-year old self is giving that self the finger).
Christmas Cards are out though no letter--posting to FB I think. The cinnamon rolls were a breeze this year--Social Butterfly was a lean mean dough-rolling machine today. As well as a remarkable cleaner upper. I covered the bar and dining room table with peanut clusters, put them in bags and realized that left us with none so I will be reprising that activity in the next couple of days.
The last three weeks, with the one week of back jacked-ness and another two of super-cold, have made me very aware that lack of productivity makes me cranky. Me no likey.
I missed Mr. Fix-it's work party, but am going to make at least three that I am really looking forward to. This is the time of year when my friend Sandra and I sometimes (not every year) find ourselves closing a party down and paying for it the next day. It's always worth it. Nothing solid for New Year's Eve, but I can be really happy with a movie and sushi.
I cannot believe SB is going to Australia in two months (I am also insanely jealous) and DB has one semester of college left. Mind Blown. Truly.
So that's the post-7% beer followed by a hot bath state of the state from me. I am nostalgic over the days of Jen's Holiday House Tour, but the only constant is change and I accept that. If I don't post here before 2015, my wish for you is a holiday and a new year filled with fun, family, friendship and fulfillment.
The profile of someone who will develop anorexia includes being a high achiever--I've actually never met cooler kids than in an eating disorder group. This wonderful young woman is in her fight right now. She was also in Washington D.C. lobbying with her mom (from Hawaii!). She recently did a beauty pageant to motivate herself to gain weight and spread eating disorder awareness.
I do not think the consumer, thin-focus culture causes eating disorders, but I do believe that every single one of us needs to learn to think critically about the influences in our world--and how they can brainwash us. I am impressed with this insight from 14-yr old Aislinn Carroll.
I can hear the banter of the emcees. Girls are bustling around with their makeup teams Practicing fake smiles Fake tans Butt glue White teeth Plastic boobs.
Identical 5-inch heels piled in a corner We treat this like its normal? Lined up like stock for slaughter A number pinned to my hip. My identity: a number. Objectified? Check.
A cheery song plays as we walk into the hot lights Trying to get our eyes wide even though Our retinas are being burned. Beauty Hurts.
The judges are looking me up and down Picking out every flaw. Did I miss a spot when I shaved? Did I not tone enough? Did I eat too much?
Her skin is clearer. Her hair is longer. Her waist is smaller. Her thighs are slimmer. Her smile is brighter. She is the winner.
I hold my face still as a pool of tears Formulates in my eyes. I pretend to be happy. To love this girl who never acknowledged me. She is complimented on her congeniality. Even though she told me to hold off On the cookies.
Danger Boy 20 years old, plays water polo for Gannon University in Erie, PA. He's the strong, silent type. Studying PoliSci.
Grown-up Girl Dr. GrownUp Girl is happily home after finishing pharmacy school in Chicago. Busy building a post-student life with Dr. GrownUp Guy.
GrownUp Guy GrownUp Girl's husband and a most-excellent son-in-law. Oh yeah, he's Dr. GrownUp Guy, PharmD.
Mr. Fix-it Husband and father extraordinaire. He is gone more than he is home, but all his frequent-flyer miles keep this big family connected.
MVP 23 years old, graduate of Colorado State Fort Collins with a major in Wildlife Biology and a minor in sustainability. He lives in FoCo with his girlfriend, Mandy, and their dog Rosy.
Social Butterfly 18 years old, attends Northern Arizona University, majoring in psychology. She's my snuggle bug.
