Guest Post by Marjie Ruth: Who's Driving Your Bus?

Once we accept that everything is exactly as it should be,

and nothing needs fixing,we can relax and just breathe.

We can leave the fixing to a higher power.

~ author unknown

I chose the opening quote for this week's email for a number of reasons. First, I was drawn to it because of the promise of comfort. It tells us "we can relax", and it even encourages us to relax not just a little, but a whole lot. "Just breathe", the author suggests to us. Ahhhh, and wouldn't it feel oh so good to be able to let go of all of today's worries...all of our concerns for tomorrow...to let go of "to do" lists, to vanquish overflowing inboxes on our email accounts, to set aside thoughts of holiday gifts to be bought & wrapped & perhaps mailed. While we're at it let's relinquish all the tension over projects that want finishing, relationships that need tending, houses & gardens that need cleaning, bills that should be paid, and the list could go on and on. Throw on top of all the hassles that go with day to day living in this modern age of convenience, speed, & ease, the perhaps on-again-off-again struggles with our loved ones as they deal with life through the distorted prism that is an eating disorder, and we may be seeing ourselves as so weighed down that we are actually struggling to breathe at all. The idea of relaxing may seem a bit comical or even mildly absurd.

Yes, what first seemed a wonderful invitation, may taunt us with perceived sarcasm. "Sure, I'll take time off to relax, and then things will only pile up more while I do! Better to keep going, to work a little harder, a little faster, a little longer, and surely I'll make some progress and get it right!" If we let our goal-oriented, perfectionist self continue in charge with a determination to conquer and control, not only will we eschew any thoughts of relaxation, but surely we'll dig ourselves a hole as we spin our wheels trying to fix our lives so that all will be right. One can only hope that the hole we dig is not 6 feet deep!

Now that I've managed to virtually destroy the idea of relaxing, let's start at the beginning of the quote and see if that's any help. I guess I avoided starting here because at first glance I find it to be a troublesome statement. "Once we accept..." Just starting there alerts me to the fact that I'm probably going to have to let go of something. Anytime anyone tells you,"Now, you're just going to need to accept the fact that..." Ouch, I know this is going to hurt. Whatever it is that comes after the "that", it will be something that I'm not going to like. Accept that you're not going to win the lottery, get the job, or whatever else it is that you were wanting. Accept that you're living beyond your means. Accept that it's beyond your control. Accept that you can't make it happen. Accept that your loved one has a serious disorder and life may never be what you expected.

Our Unknown Author is asking us to accept that everything is exactly as it should be. Well that's fine and a beautiful sentiment if you just happen to have all of your ducks in a row right now. But what about for the rest of us who might not be exactly thrilled with the state of our lives at the moment? Are we also supposed to accept that everything is exactly as it should be? "But wait" you might be pleading, "because it just doesn't seem to be as good as it should be, as I wanted things to be. It just doesn't seem fair." When the author goes on to tell us that "nothing needs fixing", that may be enough to make you want to tell Mr Unknown Author that he doesn't know anything. Hey, I'm a take charge kind of person. Nothing I love more than a fixer upper--a project that I can whip into shape and by doing so make a visible improvement in the state of things. Whether it's putting a messy room to order, resolving a challenging task at work, or helping to get a life back on track, I'm good to go. Making a difference and making things better is the ultimate high for me. Reading this quote was almost a bit unsettling as opposed to being a comfort as I think both the author and the person who sent it to me probably thought it should be.

So this two sentence quote has required multiple readings and some time for thought in order for me to appreciate what it has to offer. The second sentence is the rest of the gift. "We can leave the fixing to a higher power." And that is the conclusion that a natural born perfectionist controller like myself must work to comprehend. We're back to steps one & two of the 12 steps: admitting our powerlessness and relinquishing the desire to control to our Higher Power. We each have many talents and skills, but controlling the behavior of others is not one of them. And when dealing with an addict, any struggle for control will only play into the hands of the addiction. This is a tough, tough notion to grasp, and I struggle with it every day. To admit my powerlessness over my loved one's disorder initially feels so defeating, so reckless as to be dangerous, because surely we're putting them in danger when we step out of our attempts to control and maintain order. But that is only the way it feels...that emotional, irrational reaction to our own fear of letting go. In truth, our attempts to control have only been illusions at best, more often enabling, and co-dependent enmeshment at worst.

In order to accept our own powerlessness over our loved one's addiction, we must first grieve the fact that we can't fix things. The best part of parenting is being the absolute center of someone's universe and being able to swoop in time and time again to fix, to mend, to set right, to comfort. And what may feel like the worst part of parenting is the recognition that we are no longer that center, that fixer, that mender. While we may mourn that loss, it is vital that we come to terms with our proper place in our loved one's world, and this goes for spouses and partners as well. Learning this new role will take time and effort, but it is not without rewards. Loosing our grip on our power trip will free us to embrace a different role and that will make a difference in the relationship. Healthy boundaries make for healthier relationships in the long run. Does it mean that everything will turn out right?? That depends on what your definition of what "right" is. If for you it means being in total control so that you can make everyone happy, then you have no hope of achieving that end anyway. Like Sisyphus doomed to eternally push a huge boulder up a hill only to see it roll back down again & again, fixing others in order to achieve happiness is an impossible goal. If, on the other hand, you have come to see that you can't "make" the world right, you can learn to understand and accept that you or I cannot fix or control the minds and behaviors of others. We can focus on our own personal growth as the means to enhancing our world and the impact we have on those around us.

Greyhound Bus Lines used to have a commercial that said, "Relax, and leave the driving to us!" Hmmm, I think that's just what I need to do. While I won't be hopping on a bus anytime soon, I think I will to envision myself on a bus. But unlike I might have seen in the past, instead of being in the driver's seat I will slip into a passenger seat. I'm not going to try to control the drive, but instead I'll concentrate on enjoying the ride. Why not? Truth is that I was only kidding myself when I sought to put myself in the driver's place. Just as I totally lack the ability to shift and steer a huge bus, I delude myself when I think I can be the "driver" for the bus ride that is life, and especially when encountering such treacherous conditions as an addiction. In order to enjoy my ride, I must trust the driver. With my Higher Power taking over, I can relax and even feel relieved that I don't have to be driving. Because I'm no longer seeing myself as responsible for managing all of the lives around me, I can breathe a little easier and begin to relax a bit more. It feels a little strange at first, I admit, but T think I'm going to give this ride a try.

So, no matter what's on your "To Do" list today, won't you consider parking your car and taking a bus ride with me? Please, give it some thought.

Peacefully,

Marjie Ruth

sruth1@tampabay.rr.com

MarjieRuth1@tampabay.rr.com

727-244-9011 (c)

Avoiding Fragmented Treatment for the Adult with an Eating Disorder

[Revised 3 28 2019]
Walter Isaacson's biography, Steve Jobs, captivated me.  

Isaacson created a superb volume that not only captured Steve Jobs' life, but also captured the last few decades during which technology took an enormous leap forward as well as the management/operational philosophy that kept Apple in the lead. 

So where's the connection with eating disorders?

The philosophy he espoused at Apple has not yet been fully embraced by the health care field, an area that must adopt such a philosophy on behalf of its patients whether they have pancreatic cancer or an eating disorder. 

Steve Jobs noted at the end of his life, that ".... he was facing the type of problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach.... [emphasis mine].

In addition, Isaacson writes, Jobs' wife, Laurene Powell stated, "One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team."

In Jobs' case, this meant that "....nobody seemed to be in charge of figuring out how nutrition was related to pain care and to oncology."  [Steve Jobs by Walter Isaacson, Simon and Schuster, 2011, excerpts from pages 549-550.]

As the mother of an adult who has been in and out of treatment centers and on the "outside" working with a variety of psychiatrists, psychologists, nutritionists, medical doctors, other health care workers, and therapists for more than 30 [2019] years, I have seen the exact same thing happen in her world as Jobs' described in his. 

My loved one came close to getting the perfect kind of care she absolutely needed while in residential facilities, especially the two most recent times, when all of this and food as well as a bed was put together at the tune of what normally is charged -- anywhere between $1,000 and $2,500 a day.  Since even looking at those figures can be frightening, it is especially so for those who lack health insurance or whose insurance company does not provide coverage for eating disorders which are biologically based disorders.  The brain is a physical part of the body, is it not?

More recently my loved one, because of her diagnosis here in Arizona, received a two-tiered approach -- the behavioral health team took care of everything above her neck that was inside her skull (even the meds prescribed that clearly had an effect on her entire physiological being); and the medical piece (everything below the neck or not involved with the brain) was the  responsibility of a medical doctor and secondarily of a nutritionist.  

The caseworker's responsibility did not at first  carry over to the medical piece.  This oversight somewhat changed further along in a critical period, an enormous credit to her behavioral health care organization here in Tucson.  However, there was and still is no provision of food/appropriate nutrition and its preparation and delivery by any kind of insurance covered treatment for eating disorders outside of the hospital or residential facility in this dynamic.

So the question is for her and for many, what does an adult do after leaving a residential facility to maintain his/her eating patterns?  What might make this easier?

Food is medicine for those with eating disorders as I've noted and explained elsewhere on this blog.  This concept is the backbone of the people of F.E.A.S.T.  many of whom feed their younger loved ones at home.  As I have written elsewhere, often adults will reject this approach of living at home under the watch of a parent.  Without food, the body will die.  Without biochemical balance, the body will eventually or suddenly die.

Several other things happen to the body when it is malnourished or mistreated, too, that also can lead to death.

Because insurance companies pay attention to the bottom line, they rarely grant more than 30-60 days of residential treatment for someone whose eating disorder has taken over their life.  Believe me, an eating disorder is a deadly disease that can require months of therapy, re-nourishment and monitored eating (depending on the diagnosis that can range from anorexia to bulimia to ed-nos to binge eating disorder and probably several other varieties that do not yet have a name) and then possibly years of staying vigilant against the threat of its return depending on their incorporation of some form of cognitive therapy.  An eating disorder indeed  takes over their life.  Their behavior patterns are altered; their brain chemistry changes.  Eating disorders are the deadliest of all brain disorders/mental illnesses.

A caseworker working with the individual (e.g. an independent adult) or the family (adult living at home or a person under 18) would certainly help to keep everyone on board and communicating with each other about the care of the person with an eating disorder.  Often this falls to the mother, or the family, or a concerned advocate who is at the same time often responsible for making a living full time on behalf of the family/individual.  This is difficult at best and impossible for some to handle.  

A neutral person, highly skilled in the field of eating disorders and paid for by insurance, might be a better answer.  For example, a caseworker might be a psychiatric social worker with experience and training in the field of eating disorders.

How can we as a society make certain that until scientists figure out the "why" and develop a "cure", if such a thing is possible (and I believe genetically it is), we must create a seamless method of treatment and care for each and every person who develops an eating disorder and ensure that a caseworker as well as food/proper nutrition and its preparation and delivery are part of that prescribed treatment, whether the person is in the hospital, a residential facility, and out-patient facility or at home. 

For the most part, each person who has been diagnosed with an eating disorder, shows incredible promise to our world.  They tend to be intelligent, driven, and perfectionistic often obsessed with details as well as able to see the entire picture when their brains are working correctly and they are well-nourished.  Economically speaking, they represent the next generation of people who will invent; create; lead; write music, poetry, novels; create beautiful works of art; discover cures; raise talented children....... and take our country forward.  It is estimated that at least 10 million people in our country have eating disorders and need help.

Surely our legislators and our government can work together to make sure that those with eating disorders  receive care that is not fragmented as they work to get on and stay on the path to recovery.

Rules of the House When an Adult Returns (or for a teen who already lives there)

[The following post may be triggering for those with active eating disorders.]

The topic of rules of the house has come up now and then on a site I frequent for parents of those with eating disorders.  We certainly needed to address this subject six years ago when my very ill loved one rejoined our household after living either independently or with a significant other for more than ten years.  Our goal was to help her stay alive and get her into treatment when she was willing to take that step. Parents of adults returning to the household might want to consider this step, too.

Other parents need to bring up this subject when things go completely out of control in their household when ED (the Eating Disorder) moves in and takes over the mind of their teenager or younger child although this post is directed  for parents of teens and adults.  

In either case, many have experienced the aftermath of midnight binges, the discovery of money missing from the community food jar or even checks and credit cards from a purse/wallet, food wrappers in a personal closet or under the bed, a clogged toilet or shower drain, stashes of food not eaten or bags of regurgitated food somewhere in the room or in the garbage bin, etc., etc.  Others have been shocked to discover their loved one has been out and about late at night, either on foot or in the car.   For some, suddenly all the behaviors a parent thought were part of (relatively speaking,  given teenage years) peaceful daily living in the house have been replaced by those of a seemingly rebellious person intent on creating mayhem.

Once I shared some samples from teenage rules kinds of sites on the above-mentioned eating disorder site, I read a range of reactions.  Some parents simply shut the door and continued taking their child to therapy, figuring the behavior might improve.  Another couple I know locked their bedroom door each night; another put a lock on the pantry; another, a lock on the refrigerator; one kept no food at all in the house for a period of time.  Some took away car or other privileges.

We took the attitude of "our house, our rules." Given the age of our loved one, we're older, too,  and not as amenable to disruption as younger parents might be.  We did find ourselves retreating to our bedroom on occasion and shutting the door for our own time out.  But for the most part, because we negotiated rules with our loved one who also consulted her own therapist before the final draft was acceptable to all, we reached agreement on a  list that worked for our family in our situation.  Every family is going to be different.  I discuss this on a post re communication, too.

The suggestions of the communication method LEAP help a lot in this process.

I  went searching for the original draft because it was fairly comprehensive and might serve as a working template for those considering inviting their adult back into their household.  Of course, the list will pertain to their knowledge of their loved one's behavior.  We've heard comments from others with an adult with an eating disorder like "our adult is behaving like a teenager again!"  And, of course, these documents can always be renegotiated as things get better or possibly become worse.  

We do recommend  that the document be treated like a contract and that the parent(s) be prepared to firmly stand behind the boundaries listed.  As many parents have discovered, it's not uncommon for one with an eating disorder to try to get around the rules.  Secrecy is a major tool.  So is the ED's manipulation.

As will become obvious very quickly, the parent(s) must follow these rules, too!  The expression, do as I say and not as I do does not work in this situation.

Here is that draft drawn from several sources before we altered it to fit our situation living here in the desert with scorpions, cockroaches, and crickets:

1.         All communication channels will remain open between and among all members of your team, including your parents -- with no restrictions. 

[this one is key; without this provision things can get out of control really fast]

2.         There will be no physical or verbal abuse in the home.  Verbal abuse includes yelling.  This includes obscene gestures, as well.  No slamming of doors. [We know a parent who removed the door to his adult child's room; another who removed a teenager's door.]

3.         Treat household members and property with respect.

4.         Your room must be clean before you leave for the day/go to school, etc.

This means:  bed made, clothes picked up off floor and either put in drawers, hung in closet, placed on appropriate shelves or in dirty clothes basket; other things put away in drawers or ordered neatly on dresser surface.  

5.         Kitchen: Dishes are not to be left in the sink. Wash and put in dish drain/ or place in dishwasher. Clean up any spills right away. Clean up eating area after each meal including floor

6.         All food is to be eaten in either the kitchen or dining room area.

7.         Kitchen/pantry is off limits after dinner and before breakfast.  [For those parents new to bulimia or binge eating disorder, those with bulimia or BED often may binge in secrecy either in their room or in the kitchen after everyone has gone to bed.  The purpose of this rule is to take a stand against binge eating to make it clear that this behavior is not allowed.]

8.         No visits to the bathroom for at least 45 minutes after meals/snacks 
[Often a loved one will retreat to the bathroom immediately after eating to purge what s/he has eaten.  This rule is to prevent this from happening.  After 45 minutes to an hour, a lot of the nutrients eaten have been absorbed so although vomiting will be very detrimental for electrolyte balance, calories will not be as severely affected; ditto, by the way, re laxatives]

9.         Laundry room: place only washable clothes in washer/dryer.  Clean lint filter as well as washing machine filter after each use.  Work with parent(s) to learn operation.

10.       No activity in common areas before 5AM. [Sleep is critical!]

11.       No leaving the house by any means after bedtime and before 5 AM (see item  #10)
[we have a house alarm that signals when a window is opened......]

12.       Curfew is  by 6 pm for dinner (this is negotiable depending on snack and dinner time)

13.       Parent(s) bedroom/bathroom is off limits

13.       Telephone - early morning cellphone calls  (before 7 am) need to be made in your room; moderate your voice.   House phone: No long distance or toll calls without prior permission.

14.       Clean common areas after use.  Pick up personal belongings and put them away in the evening before bed.

12.       Do not borrow or take any item in the house without permission.

13.       No visitors in the house without parent(s)' permission and presence.

14.       Chores must be done per list.

15.       No smoking/alcohol/illegal substances -- depending on your loved one's behavior(s) re brain function-altering substances

16.       No diet soda or other foods with aspartame; caffeine only in the morning incl all beverages or Excedrin (the purpose of this rule is to help you sleep at nighttime).  [On this point I believe that aspartame is toxic at the levels those with eating disorders often drink soda or add packets to coffee/tea and Excedrin has caffeine.]

17.       Room and Board is $xx/week.  Some might add points about gasoline allowance; car usage; allowance; missed appointments and charges for those if parent is paying; fines incurred, etc. or of course not charge for room and board.

MEALS

1. Three meals a day plus two snacks.  Breakfast and dinner taken here at the house unless dinner is scheduled at  with others.  Lunch here if you are here; pack a lunch or plan on purchasing lunch if away from the house.  [This item is important for those who are helping in the re-feeding process.]
2. No forbidden foods unless doctor prescribes specifically (e.g. gluten-free).
3. We will work with you on the menu and intake to slowly re-gain weight to a healthy level [respect for the adult that s/he is]

CHORES LIST

1.         Help with house and yard work as requested [depending on physical condition]

2.         Keep the guest bathroom clean - floors, sinks, toilet – and personal belongings in appropriate places.  Hang towels and washcloths neatly on the racks.

4.         Keep your room clean - dust/vacuum as necessary

5.         Change and wash your sheets at least once a week, wash your towels at least twice a week

CONSEQUENCES:  Non-compliance will result in you being asked to leave the house and make your own living arrangements.

I agree to these rules: _________________________________ Date:  ______________________

Genetically Programmed Body Size

If you missed this post written by "Kathy" and published on Dr. O'Toole's Blog, as well as linked on Laura Collins' blog, the above link will take you to another opportunity to take a look at one mother's struggle to accept her daughter's genetically programmed body size or set point.

I remember when I was finally recovering from my eating disorder in my early thirties, I realized that I was staying healthier and thinking much more clearly when my weight stayed above a certain point.  [I try hard on this blog not to mention numbers as that can be triggering for some readers.]

When I dropped below that point, either bronchitis or a solid cold would take over and intellectually, my abilities seemed less "there."  My body spoke to me.

Even later, when I remarried and reached my later forties, my doctor was jubilant (no kidding) when I finally reached the point that he believed, based on research, etc. was best for me. 

As I mentioned in an earlier post, we're all like snowflakes; each of us is different.  Encouraging our loved ones to gain or regain the necessary weight can sometimes be really, really difficult.  But, I think (and learned), it's worth it.  Kathy's post (click on the link in the first paragraph)  illustrates the benefits of doing this and very importantly, as well, reveals her own struggles in the process.

A Map of the Brain

Thanks to the "magic" of Facebook and social networking, I was alerted to the existence of a lecture titled "A Map of the Brain" by Allan Jones on TED.

Great way to launch one's knowledge about the brain.

Go to this link.   You will, I hope, enjoy a fascinating 15 minutes or so lecture.

Consensus Science - an upcoming conference

During the FEAST conference there was some discussion of the need to develop consensus around points and procedures about eating disorders. 


There will be a conference on this topic - Consensus Science - in Silver Spring, Maryland at the end of this month.  Here's a link to the announcement.  Here's introductory information about the conference.  Technical, I know, but for those doing research, this is an important related topic.

Collaborations between industry, regulatory agencies, and academia are generating consensus on the value of innovative tools for drug development (data standards, open databases, biomarkers, patient-reported outcome measures, quantitative disease progression models, clinical imaging, and others). These tools will accelerate the development of efficacious medicines with optimal risk profiles.
This cross-sector conference will feature state-of-the-art drug development tools while reviewing the lessons learned from Public Private Partnerships (PPPs) and scanning the landscape for the most pressing needs in drug and diagnostic development.

 

The Family is the Key

June Alexander and her her co-presenter on ‘Hope at Every Age’ at the 2011 NEDA Conference, Assistant Professor Renee Rienecke Hoste, from the University of Chicago, explains why family involvement is important.  

 

This is one of the best wrap-ups I've read re Family-Based Therapy and why the involvement of the Family is so very important.

Guest Post By Marjie Ruth - We're Still Where We Are!

I enjoy Marjie's posts.  Her offering each week or so always makes me think.  I thought this post was especially poignant since I just returned from the F.E.A.S.T. conference at which, of course, everyone was wondering where we are......

"Oh, Daddy, we're still where we are!"
~ young girl sitting behind me on the plane

Perhaps you're wondering about the unusual quote that I've started out with this week. As we were returning home from a trip recently, there was a young girl, probably about 5 or 6 years old sitting behind me. It was obviously her first flight, and she was understandably excited. When she first sat down, I had to chuckle as she announced to her dad that her ears were bothering her already. And this was while half the passengers had yet to board! She had obviously been told what to expect and in her excitement she was experiencing "anticipatory ear pressure". It was about 2 hours into the flight when she raised her window shade to look out once again, and upon seeing that we were still flying amidst the clouds she announced in exasperation, "Oh, Daddy, we're still where we are!". I smiled at her words and the succinct way she had managed to capture her perception so innocently and accurately in that phrase. By all appearances if one were to judge by the scene out the window, we had not made any progress at all in our travels . Flying along at 23,000 feet (or whatever), there were no familiar landmarks to help us determine where we were, how far we had gone, or in what direction we were headed. The more I thought about what she said, the more I was intrigued by the words.

We're still where we are! State it with desperation, and it becomes a cry for help. Where are things headed? When will we see progress? How will we know if things are going in the right direction? How do we get out of here? These are all questions that we ask at one time or another when dealing with a loved one and their eating disorder. It's foreign territory devoid of the usual landmarks. Perhaps that's why we often struggle so to keep the usual markers of progress in our lives. "Treatment is important, but let's not let it interfere with school (or career or family)," we think. These are things that define us and tell us where we are and where we're going. It may seem frightening to us to let them go. What with this horrible addiction already causing so much tension and anguish, we may find ourselves clinging to those "markers" in our lives. While the emotion is understandable, there may be some danger there. A person driven to such a self destructive behavior as a coping mechanism is most definitely experiencing some serious emotional pain in their life. It may very well be that the marker (school, career, friends, family dynamics, etc) we want to maintain is an integral factor in the mental turmoil they're struggling to deal with, albeit in an unhealthy way. The important guide here is to not let our own emotional needs become a detriment to therapy and recovery.

We're still where we are! Cry it with exasperation, and it is the voice of frustration. Why did this happen? What was the cause? How much longer will it last? Where can we find help? Why isn't she (or he) getting any better? Why can't she/he just eat? I don't think I can take much more of this! For sure, living with someone who is in the throes of an eating disorder is a very tough place to be. Just like the little girl who could hardly wait to get to her Florida destination and was frustrated when she looked out the window as it seemed that nothing had changed and she wasn't any closer than before, we are desperate and impatient for healing and a return to a more normal life. For the little girl, life was going to be very good when the plane landed. We find ourselves thinking in a similar pattern: if they can just get over this disorder, our lives will be good again. We may find that we think in terms of life before the disorder (the time before we knew that our loved one had become addicted), life as it is now with the monster that is the disorder creating such misery and havoc for everyone, and life as it will be (back to just like before hopefully or at least much better than now) after the disorder. Again, this is an understandable outlook but not necessarily a helpful one for at least two reasons. Just as the Zen philosopher would tell us that no man can put his hand in the same stream twice (because the water is always moving and changing, it is always a different stream), life in the future is always different from the past if only because we have experienced time in between. When dealing with something that develops at such a deep emotionally subconscious level and becomes both mentally and physically entrenched, even 100% recovery cannot erase the history of the battle. Nor should we want it to as it's the learning that occurs through successfully fighting for recovery that enables the victim to master the steps to maintain that recovery. Therefore, to put it in my own Zen-like words: better to not waste energy wishing for things to return to past; instead use energy to direct mind to learn from past, apply lessons to present knowing that it will become what is to be.

We're still where we are! Now, try saying it with a bit of awe and wonder. "We're still where we are." Do you know where that is? If not, all the more reason to slow down and figure it out. A big issue dealt with in therapy is learning to stay in the moment. That's because either projecting into the future or clinging to the past has not been healthy for them. Looking ahead, especially if one is at all depressed, can be extremely frightening and debilitating. Can't understand that? Well, good for you as it means you're probably not suffering from depression, but please don't let that prevent you from having empathy for those who are not so lucky. It's common for those with an eating disorder to also be diagnosed with depression. (It's my hunch that often in such cases it was untreated depression that led to the eating disorder as a coping mechanism, but that's just my theory.) And for someone depressed, the future is just a black hole looming ahead. An unrealistic longing for the past is also a sign of trouble. This longing to be back in a safe time and place can trigger an irrational desire to remain childlike, thus avoiding the dangers inherent in dealing with "adulthood" in our society. This is part of why recovery encourages staying in the moment. Another reason is that the Eating Disorder (ED) likes to make things complicated, thereby insuring the need for its place in their lives, by making their thoughts all confused and anxious with worries about the future and painful reminders about a past they no longer live in. The ED wants life to seem very complicated and its disordered solution the only obvious answer. Staying in the moment is a way to help defuse the disorder by keeping life simpler, one moment at a time. And this is a strategy we can all gain from if we apply it to our own lives. Think about it: when your loved one does something that seems so very disordered, if we project that ahead in what we see as a logical progression, we can find ourselves in despair. But if we isolate that moment--take it as the single incident it is and admit that it's our fear that makes us worry about the future, and refuse to give in to the folly of projecting ahead--we cut that moment down to size and bring our own response in to scale. This "downsizing" to the reality of the moment can then help us to avoid contributing to the disorder through our own emotional acting out. We're still where we are, right now, whether we like it or not. And especially when we don't like it, life is easier to handle on a moment by moment basis. In this way we avoid being overcome by despair.

Well, we're still where we are, and maybe that's just where we need to be right now.

marjie Ruth
(727)244-9011 (c)

sruth1@tampabay.rr.com

marjieRuth1@gmail.com

As always, feel free to share this email with anyone who might have the least bit of interest in it. Keep my name and email address with it please, so that anyone who reads it will know who is responsible for the thoughts expressed here. If you are receiving this and would rather not be bothered, just email me and I'll take your name off the list. Thanks.

Report - Day Two - The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Following breakfast on Friday morning, we all moved on to the ballroom to hear remarks by a panel of four women representing the United States (Colleen Wise), the UK (Rachel Polonsky and Maria FinnisChataway) and Australia (Bridget Bonnin) moderated by Susan Ringwood, the Chief Executive of BEAT as well as a member of FEAST's Professional Advisory Panel.  Their goal was to "put parent concerns and assets on the map:  the law, healthcare policy, advocacy."

(For a look at everyone serving as 2015 board members of  F.E.A.S.T., go to this link.)

After introducing themselves, each spoke of the idiosyncracies of their country's treatment policies, insurance coverage, availability of health care as well as level of care.  Insurance was not an issue in the UK or Australia whereas trying to find funds to get treatment for loved ones in the United States was described as a totally different (as we know) situation.   Colleen brought the house down by remarking she regretted that she was the only one on the panel without an accent.  Her remark actually cut the tension for we were all in for an emotional ride over the next hour while each described her personal experience.  I could see heads nodding around the room as we identified with the journeys being presented.  I could not help but cry when Colleen articulately described what happened in her household and to her daughter who was a healthy and happy teenager until she developed anorexia. 

As has happened before and I know will continue to occur, we again were reminded of the different ways that eating disorders appear with or without prior observable behaviors such as anxiety and with or without the profile that many refer to including perfectionism, obsession to detail, high-functioning, self-criticism and other traits.

Following a much-needed break, we all regrouped and were introduced to Laura Discipio (ANAD), Chevese Turner (BEDA), and Doug Bunnell (formerly NEDA; also Renfrew).   Laura Collins set the stage for an open forum with several questions:

• Why can't we all just get along?
• Do parents have a special role in identifying and challenging ideas in the professional world?
• How can parent activists work with professional and patient activists?
• Whose shoulders do we stand on? (learning from long-time activists)
• Where the the new parent activists going to come from?

These are important questions and the interest shown by those present in developing responses and thinking about the future illustrated how dedicated everyone in the room was to setting the stage for next steps.  Concern was expressed about the evident (and historical) fragmentation of the Eating Disorder community and the desire to find common ground in order to effect change.  We acknowledged again that we do not have one specific way or path and that we need to work together and continue communication among the organizations.  Suggestions included exchanging board members, looking for opportunities to partner on projects, devoting ourselves to answering the needs of families and their loved ones.  We agreed that everything is complex, that there's much to learn about the treatment of eating disorders, and a lot we don't know.  Regarding the last point of the list,  we recognized that parent activists will come and go as their lives move on.  Many are suffering from PTSD and need a break before returning to add new energy to the work of F.E.A.S.T. and other organizations.    [Many remarks were made during this session; I do hope a transcript will become available in the near future so the suggestions can be prioritized and evaluated.]

This discussion could have continued for the rest of the day, I think.  It also strikes me, as one who used to lead discussions like this, that future meetings might include a white board or large pad of paper, easel and marker to quickly write down a brief summary of different points made.  A suggestion for next year?!

This intense hour was followed by business meetings to which symposium participants were invited.  These included an International Registry Project, a Medical Education Task Force, and Australian and UK Task Forces.  I hope progress reports will be issued.  I was particularly interested in the Medical Education Task Force but needed to take care of some personal business and could not attend.

Following lunch we were summoned by chimes to the ballroom at precisely 12:55 pm to be seated to welcome Dr. Thomas Insel, Director of the United States National Institute of Mental Health and our keynote speaker.

Dr. Insel began by discussing the National Institutes and Centers of which there are 22, all funded by our Federal Government.  Their charge is to support research for all medically causes illnesses; $31 billion of taxpayer funds are invested annually.  The National Institute of Mental Health focuses on the research and SAMHSA provides the services.  Specifically,the mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.  I've provided links here to both organizations since a better understanding of their role and mission will guide those of us who need to know to whom to go for what.

Just going to the responsibilities of the Office of the Director is an eye-opening experience! And the link to the current state of eating disorders is also interesting.  Many of Dr. Insel's comments can be found on these links as well as in his blog.  Dr. Insel's recent essay titled No Health Without Mental Health is especially poignant and refers to the Patient Protection and Affordable Care Act discussed yesterday by Jeanine Cogan of the Eating Disorder Coalition.  Brain Development is his latest topic.

Having highlighted many document that provide the information Dr. Insel drew upon during his talk, I'll list some of his points I found salient to where we're going.  He noted,

We are on the cusp of a major revolution in the understanding of mental illness and specifically of illnesses such as eating disorders, schizophrenia, bipolar disorder and autism.  These are biologically based brain disorders.

One might refer to brain disorders as circuit or functional problems; an arrhythmia of the brain.

These are developmental disorders, as well.  We need to study and get a better understanding of what happens in the brain when a person develops one of these disorders especially since these disorders predominantly begin in young people with identifiable onset as early as 14 and 75 percent by the age of 24.  Since these disorders appear while a young person's brain is still developing, what does the change do to the brain?  to the normal development of the brain?

Other illnesses progress along trajectories.  Often, the symptoms we observe are the last things we know about as the brain continues to adapt until a severe stage of the disease emerges.  Clearly, early intervention will yield the best outcome.  For example, in schizophrenia most boys develop the presence of psychosis by the age of 19; girls about the age of 21-22.  Psychosis is a late stage. 

Are there similar trajectories for eating disorders?  Are there identifiable cognitive changes?  biomarkers? risks that one can highlight and address?  (Interestingly, a news item today notes Computer analysis of brain scans could help predict how serious or long term a psychotic patient's illness may become and help doctors make more accurate decisions about how best to treat them, researchers said on Monday.  In a study in the journal Psychological Medicine, scientists from King's College London's Institute of Psychiatry and University College London's computer science department found that using computer algorithms to analyze MRI (magnetic resonance imaging) brain scans can predict a patient's outcome.  "This is the first step toward being able to use brain imaging to provide tangible benefit to patients affected by psychosis," said Paola Dazzan of King's, who co-led the study.)

The study of genomics and epigenomics will yield breakthroughs within the next five years in the areas of diagnosis, treatment, and the preparation of the workforce.

Re diagnosis, previously mental illness was diagnosed by consensus.  We are moving towards gaining the  knowledge of what underlies those behaviors and symptoms.  An illustration of advances made in the field of medicine includes the fact that there are now six types of breast cancer, all treated differently.  Antibodies are developed as early as the age of 2 that lead to diabetes later on.

Believes that there may be a wide spectrum of eating disorders for which different kinds of treatment may be necessary.

Frankly, I was delighted by this observation coming from Dr. Insel since I speculated about this on my blog a few months ago reflecting on scientific knowledge provided to me by Martie Fankhauser, a neuropsychiatric pharmacist  who I consulted when I wanted to learn more about the brain from a neurochemical point of view.  Since there has been no new medication for many years to treat ED, non-medication therapy is really important.  [Note that the current estimate to develop a new drug is $1 billion.]

Lock and Le Grange have demonstrated that one can turn an eating disorder on its head using FBT.  Families are part of the solution, for sure.  Fifty percent of those who use their method recover in one year; what about the other 50 percent.  Can this be scaled up in a larger study to understand why? 

Re training - many in the field of eating disorders do not understand the concept of evidence-based treatment nor is their training scientifically based.  Change must happen.  Retraining must occur.  Perhaps an entirely new discipline in medicine will develop related to brain disorders - Clinical Neuroscience, for example.  Required re-accreditation in the field of eating disorders may be a possibility.  There is a general lack of understanding of the severity of these diseases.  Expertise is needed in the training of patients to cognitively override the diseases of eating disorders.  

Dr.Insel closed his presentation by noting that although the field has grown tremendously, much remains unknown.  [Some were able to capture his talk thanks to the live videostreaming that occurred during the entire conference. At least one section is reproduced on the Around the Dinner Table website.]

[While trawling the internet today - 12/6/2011 - I came across this vimeo thanks to the provision of it to the public by Jane Cawley.  Here Dr. Insel notes several of the points he touched on in his talk.]

Dr. Julie O'Toole, MD, founder and medical director of the Kartini Clinic, author of Give Food a Chance and a member of the F.E.A.S.T. Professional Advisory Panel moderated a panel brought together to determine where parents want the eating disorder world to go.  Dr. Insel was joined by Jeanine Cogan (EDC), Susan Ringwood (BEAT), Stephanie Bauer (Academy for Eating Disorders), and Dr. Richard Kreipe (AAP, Professor of Pediatrics and Adolescent Medicine).

Question:  How do we convey the severity of this disease without highlighting the usual sensationalistic photos and descriptions?

• Having data and stories of patients and family members.
• We need a big media push emphasizing eating disorders as a public health issue
• Our common task is to get people healthy first and foremost
• The field must partner with parents and listen to parental concerns.
• Keep the best interest of the child/young adult/adult in mind.

What other steps can be taken?

• Create a Consensus Panel 
• Develop Criteria for a Center of Excellence
• Study Sibling Risk
• Need scientific agency media push
• Train more pediatricians/adolescent specialists
• Distribute the revised AED booklet as widely as possible
• Disseminate techniques, knowledge and methods to parents

This discussion evolved into somewhat of a free-for-all and many comments were offered.  The transcript will undoubtedly add much value to the final report on the symposium.

A highlight of the afternoon was the announcement by the Board of a new "Magic Plate Award."  Laura Collins was surprised and very touched to be the first recipient.

Following another break and the raffle winner announcements (books and manuals donated by Gurze Books), a surprising number of people (given the late hour and travel requirements of many attending the conference) gathered in a smaller room to hear the stories of four recovered people who answered questions about their experiences including what helped and what didn't.  Carrie Arnold, Olympia Collins, Katie Cullinane, and June Alexander shared much about their lives when they were fighting eating disorders and offered solutions towards recovery based on what worked for them.  Questions ranged from family relationships to negotiating college education as well as treatment.  Each presented a different journey, a helpful offering towards understanding the variability of eating disorders.

I needed to leave early to join my son for dinner at Union Station.  He traveled by train down from New York City to spend some time with me - a wonderful surprise.

I look forward to next year's conference and applaud Laura Collins and other F.E.A.S.T. organizers who put together an educational and progressive experience.  I've never attended a conference quite like this before and am sure that much will evolve as a result of the discussions - formal and informal - that occurred.

Report - Day One -The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Earlier this year I received a notice that the F.E.A.S.T. community would be hosting a 2-day conference in Alexandria, Virginia.  I also knew, because I'd received several emails, that the National Eating Disorder Association would be hosting a conference in Los Angeles the month before.  What to do?  I could not attend both; I had other plans for October but not that weekend; and I had been a staunch supporter of Laura Collins since I first encountered her book Eating with Your Anorexic - How My Child Recovered Through Family-Based Treatment and Yours Can Too published in 2005, the year my daughter, slowly declining since 2002 after she relapsed, careened towards death and needed intensive treatment.

My thought was that once she was released from treatment, she could live with us and I would try to use the principles of the book and the other references.  My daughter was in her early thirties by then, an adult, and determined to do things on her own.  The "parentectomy" encouraged by the treatment center was successful and my hopes of transitioning her for a few months went by the wayside.

I decided to go to Alexandria, Virginia since I had attended the NEDA Convention just a year ago,  to meet, hopefully, many of the parents who I'd met on Something Fishy/Around the Dinner Table and especially, Laura, with whom I had been corresponding off and on for awhile.

I was intrigued by the purpose of the Symposium, too:

Moving forward from a history of being blamed and marginalized, families will collaborate with the scientific community to re-write the map of options and actions for families.  A new era of science-based, family inclusive, and truly optimistic eating disorder treatment begins now.

I've decided to take the agenda that we were given and use it to describe my personal journey and my "take-aways" through the next few days, starting with Wednesday night at dinner.

The dinners at the end of the day deserve a special mention.  As my son rightly has noted, I'm more of an introvert than an extrovert - perhaps somewhere in the middle.  So, I have have found it difficult to plop myself down in the middle of an event and easily connect with people.  I've been working on this all my life but it's still not easy for me.  As well, my sensitivity level is such that after awhile too many people and too much noise leads me to escape for awhile to regroup.  Last year at the NEDA Conference I often found myself adrift and still very much overwhelmed by my daughter's severe illness.  Attempting to connect was hard and there weren't to my way of thinking opportunities to do that after a long day.  And, besides, truthfully,  I was really tired even before I got there but eager to learn as much as I could.  As my blog after that event illustrates, I did learn a lot and became a major supporter of NEDA.

This year, just knowing that there would be an organized dinner at which I could just show up and sit next to someone, helped me a lot.  I joined a large group the first night at a "George Washington ate here" place - Gadsby's Tavern and walked there with a couple - parents - from Michigan and a pediatrician from N. California.  A great way to get the evening started.  Then I sat with them at the table, too.  We had a good time!

So back to the beginning.......

The conference was at the Holiday Inn in Old Town Alexandria, Virginia.  I obtained lodging there.  A grocery store was across the street where I purchased a few things I like to have that I don't want to haul in my suitcase.  The facilities worked well - the large dining room (where we enjoyed lunch each day) was separate from the large main meeting room.  There were break-out rooms along the corridor with the corridor and side corridor being wide enough to provide room for participants as well as snack tables, beverages, the daily morning buffet breakfast, and the information/registration table.  My room was large and comfortable and was on an upper floor, something I appreciate when traveling by myself.  The entire hotel is non-smoking, another plus.  A USA Today appeared at the door each weekday morning and  The Financial Times was available in the lobby on Saturday morning when I left early for the airport.  Incidentally, the latter is new to me and I loved the variety of articles.  I finally got around to reading USA Today in the evening right before bed.

Thursday morning breakfast was served beginning at 7 a.m. and Laura Collins, F.E.A.S.T. Executive Director, was introduced by her daughter to start the program at 8:30 a.m.  I felt that Laura's opening remarks drew us all together and laid out the plan for the conference and our collaboration.  I noticed early on that Dr. Doug Bunnell, past President of  NEDA and a charter member of the Academy for Eating Disorders was there - a plus for the idea of collaboration, too.

A highlight of any conference (to me) is the coordination of the introduction of speakers and transition from one speaker to another.  So well done!  Having been a member of Toastmasters for awhile, I learned that this aspect and skill are very important to set the professional tone.  Carrie Arnold and Stephanie Milstein, PhD, served as the Masters of Ceremony team, coordinating the hand-off of speakers for two days.  Carrie is a writer, author - Running on Empty and Next to Nothing,   and blogger (ED-Bites.com) in recovery from anorexia.  Stephanie is a doctoral level clinical psychologist licensed in the state of Michigan.

I certainly cannot report everything stated; however, I will provide some of the takeaways that stuck with me. It's my understanding that information presented at the conference will be posted on the website at a later time.

I gathered from the two-day schedule that we would first be reminded of where we are in terms of what's come before and what is happening now.  We'd also be alerted to what to look for and what to set aside.  From there, thanks to Ruth Sullivan, we'd get a look into another activist's method for gaining traction and learn about current efforts.

The second day we'd move quickly into experiences and what has worked, build on the conversations that had been going on for more than twenty-four hours at the conference as well as those outside involving all the organizations having to do with eating disorders, and also start to look forward using the questions provided including "where are the new parent activists going to come from?"  From there we'd get some guidelines, and then hear from Dr. Thomas Insel, director of NIMH, who would summarize and give us a heads up on where research is headed.  The question and answer period to follow was designed to provide the panelists here represented by the acronyms of their organizations (NIMH, EDC, BEAT, AED, and the AAP) with our concerns as parents and to obtain their feedback.

Finally, we were to be given the opportunity to hear from four people in recovery from the United States, the UK, and Australia.  A rather wonderful way to wrap it up.

The first speaker was Dr. James Lock, a professor of Child Psychiatry and Pediatrics in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine where he also serves as Director of the Eating Disorder Program for Children and Adolescents.  He is co-author with Daniel Le Grange of the important book, Help Your Teenager Beat an Eating Disorder.  Their work has changed how eating disorders are treated. His research includes 4 current NIH funded projects and his recent research focuses on integrating treatment research with neurosciences in eating disorders.

His presentation, titled Rocky Terrain: Challenging Ideas About How Professionals Look at Families began with a photo of a pile of rocks.  He steered the direction of the conference towards better understanding of why many in the Eating Disorder Treatment Field use outdated methods (they were taught that way and find it difficult if not even terrifying to change what they are so invested in) and then on towards how to encourage change.  He reminded the audience of the original opinions about autism and schizophrenia and eating disorders, citing several well-known names whose theories are no longer mainstream.  He also reminded us that medicine is a "practical art" and used Greek mythology imagery to discuss the old way love affair with etiology that eventually crashed on the shores.  He reminded us, too, that not everyone responds to the same kind of therapy and expressed concern about the insular quality of treatment centers.

This reminder was an underlying theme that was repeated throughout the conference.

I connected with his list of characteristics of a good parent in a crisis situation:  enmeshed, rigid, anxious, over-involved.  As he stated, when a child is ill, why not?  He also referred to a study that looked at parents of children who were cancer survivors and found many suffered from PTSD even ten years later!

Becky Henry, author, speaker and coach and member of the F.E.A.S.T. Board of Directors moderated a question and answer period involving those present with Dr. Locke.  Some of the highlights I grasped  included:

His suggestion that parents remember a therapist may have been taught in the "old way" and need to be approached with the initial question, "Do you know about Family-Based Therapy?"  If amenable to hearing about the technique, share information and get a sense of what might be next.  If not, move on.

To the question of when to start therapy after diagnosis, Dr. Lock referred to the responses of the patients themselves:  1/3 wanted to work; the other 2/3 were not ready yet.  The conceptualization has a lot to do with the reaction of the 1/3 who said they were ready to work, he said, and when healthy behaviors are disrupted for a long time, the individuals take longer to shift back to healthy behaviors.  He said art therapy was okay but otherwise to follow the suggestions in their book and manual at the beginning.

Re underlying traits, acknowledging that some do not fit the profile, he said there is a continuum and that anorexia can exacerbate these such as anxiety but for others, not at all.

Re boys with eating disorders - he remarked in his experience that although the frequency of illness may be less, the personality and behaviors are similar to those of girls.  He said his studies were the first to include boys and noted that the content of an assessment for boys and men needs to improve; a thorough and in-depth study is needed.

Following the break, Cynthia M. Bulik, PhD, author of the book Crave (see my review elsewhere on this blog), and Director of the University of North Carolina Eating Disorder Center, concentrated on the avoidance of pseudoscience and misinformation.

She underscored the complexity of eating disorders and reminded us that a cure will not be simple; genetic and environmental information blend in unforeseeable ways. She advised us to avoid blame and sensationalism, recommended Carrie Arnold's blog (ED-bites.com), and emphasized again that "no one shoe fits all".  This attitude is important, especially for those fighting an ED for whom treatment did not work (including FBT).  She said the emphasis on only one way can lead to what she called evidence-based guilt on the part of the patient.  In other words patients can be overwhelmed by guilt when they are repeatedly told that x treatment works and yet can see for themselves in their own experience that it does not.  The no one shoe fits all information can also help parents help their children look for something else rather than just give up.  Bulik also reminded all of us that we mustn't let desperation interfere with our critical thinking as we examine information presented to us.

Next up was Dr. Walter Kaye, Director of the University of California, San Diego Medical Center Eating Disorder Treatment and Research Program.  Building on what Dr. Bulik had said, he noted that to date our evidence base is limited; a lot of research involving more participants needs to be done.  In other words, currently there is little long-term outcome data.  This will change as more funding for such research becomes available and our work is to agitate for that funding.

Dr. Kaye briefly summarized what is known in the fields of genetics, biology and traits.  He noted that 50 to 70 percent of those who develop eating disorders recover by their mid-twenties.  Why?  He repeated that we do not have enough data on the course of the illness to answer that question.  We do know that some people fit a profile; others do not and that traits continue after the eating disorder is gone that need to be addressed.

Dr. Kaye drew attention to the state of programs for the treatment of eating disorders.  He suggested that programs need to provide more data to illustrate that their approach can work (if the materials say so) rather than just publish blanket statements about their success.  He said in our search for a program we need to know who is involved in the direct care of patients and especially the time they've spent in training, their expertise, their skills and direct experience with those with eating disorders.  As an aside, he observed many sites will mention they have a staff but will not provide a list of who's currently on the staff, whether they are full time or part time, and what their credentials and background are.  He emphasized the importance of staff training in the facility's environment. We, he said, should be able to contact the program and evaluate the owner's expertise in the field, as well.

We, he said, should look for constructive skill training with real life applications and preparation for the patients.

Dr. Kaye summarized the need for data, better knowledge of genetics and of behavioral wiring, improved treatments, outcome studies and Centers of Excellence which provide intensive internships in those improved and evidence-based treatment programs.  We all should call for the intensive re-training of all those involved in the treatment of eating disorders.  He repeated that currently we have what he termed terrible longitudinal data and expressed the hope that with funding such as he has now received, he will be able to add to that data.

In closing, Dr. Kaye announced that he had received funding to conduct brain imaging studies on a cohort of those in recovery between the ages of 18 and 45, who are not on any medication, and for women those who have menstrual cycles.  The funds will pay for travel to his research center and expenses while there.  Here is a link for more information about the study and eligibility.

After a welcomed break for lunch following an intensive morning, we returned to hear from Dr. Ruth Sullivan and her summary of the history of the organization that she helped found - the Autism Society of America - and what we, as parent activists, might take away to implement in order to gain traction.  This link to an interview provides a lot of the information we gained yet for those present her personal spin and sense of humor brought the history of the Autism movement to life.

Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program.  Some of the points that were highlighted in the discussion included:

• work to avoid infighting
• define common ground
• take a stand
• obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
• contact state and national legislators
• ask for what you want and work with other ED organizations to say it in the same way
• involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
• develop a forceful and attention getting PSA
• continue to research the data and the science
• demand better quality of care
• invite legislators to meetings, to breakfast
• work to agree to disagree and still talk
• respect the dignity of others

Re the PSA, I was quite taken with the suggestion to develop a poster/an ad/a PSA using the photo of a young person apparently in terrific health coupled with the words, "this is the face of anorexia".  As we learned during day two, there is a theory that eating disorders like other developmental disorders first begin below the surface, so to speak, and that the actual behaviors of the disease itself indicate a late stage in this disease.  This poster would speak to that fact and experts might want to work on what the poster might say.

Wonderful activists Jeanine Cogan, PhD, and Kathleen MacDonald, of the Eating Disorder Coalition came to the microphone and continued the discussion, specifically geared towards working with legislators.  They highlighted the F.R.E.E.D. Act and its potential far-reaching effects on policy and practice in this country including, for example, the establishment of Centers of Excellence.  They both emphasized the importance of the stories of those affected by eating disorders and gave examples of the EDC's effectiveness to date.  They encouraged those attending to participate in lobbying at the Capitol.

We closed out the day with the opportunity to attend one of four offerings in Activist Training:  Government/Policy Change; Traditional Media and Public Speaking; Virtual Media; and Online Social Networking.  I chose to attend Carrie Arnold's group to discuss Virtual Media since I've been enjoying working on my blog and am wondering how I might improve it.  Carrie focused first on on-line news-sites and the need for new information all the time that is presented in an exciting, edgy and sometimes but not always negative (sensationalistic) way.  She encouraged those of us who visit such sites to click on "like" if we do because the number of hits influence the direction of future articles (as well as bring in advertising income) and to not share a story if we disagree with it.  Carrie then outlined some poinst to know about blogging, using the history of her site as an example.  She reminded those present that the information becomes archived forever on the internet.  She advised using pseudonyms if one is concerned about privacy and she gave us tips about how to gain more information about a subject in the blogging and twitter world.

After resting up, I joined quite a crowd at the Bilbo Baggins restaurant where we commandeered a large room and had a raucous but very good time.  I sat with a new group of folks and was fortunate to meet several moms whose names were familiar to me on Around the Dinner Table and to sit next to a woman in her twenties who, after battling anorexia for quite some time, established recovery by researching the Around the Dinner Table Forum and extracting menu and food options to give herself the structure she needed until she re-nourished herself and moved on.

I was glad to get to bed shortly after that and enjoyed another good night's rest in preparation for the day ahead.

A Description of Our Family Member's and Our Experience - 2016 update

[April 2016]

[This piece is periodically updated as more information becomes available.  The 2011 version was my presentation to a group of health care professionals.  A later version was my presentation during a lobby day in 2013 in Phoenix for State legislators.]


In 2011 I was asked to present "my story" at a meeting of the local chapter of the IAEDP, one of the eating disorder associations, so the care providers present (therapists, nutritionists, residential program folks, etc.) could hear my story along with the stories of two others, as well.  We were limited to about 15-20 minutes if I recall correctly.  Sometimes I wish I could also hear my family member's (FM) story for I know that I only know the tip of the iceberg of her experience(s), many of which I know have been gut-wrenching in all senses of that word.   

Yet FM's is the journey that brought me to change direction of this blog.  FM's journey also led me to dig deep into my self some more and to learn how to respond better to the situation and to her needs.

I am now the in-my-seventies family member of and firm advocate for a beloved person who has been fighting bulimia/anorexia for more than 27 years.  FM began her fight in her mid teens although in retrospect there were signs of picky eating many years before.    I intend to talk here about my experiences in learning how to navigate the system here in Tucson to help my FM obtain assistance as well as offer suggestions for next steps.

As I have written elsewhere on this blog, I fought bulimia for about 15 years until I decided I was sick and tired of being sick and tired.  I quit about 40 years ago and have been in recovery - an ongoing process.
  

My family has a history of depression, eating disorders/disordered eating, anxiety disorders, autism spectrum disorders and even suicide.  I did not know these details when my FM first came to me for help in the late 1980’s.   She told me she had begun purging at the suggestion of a friend in order to lose weight (she had been teased) and had become hooked into it, so much so that she lost weight and descended into anorexia, as well.  I have since learned a lot more about what happened to her around that time and in her college years as she has gradually opened up to me.   

Bottom line?  The propensity for this disorder runs in our extended family but I didn’t comprehend or understand this when her journey began or even mine.  I was told then  and and had no reason not to believe that one month of residential treatment was sufficient for her to get into recovery.  I hoped that was true because I didn't want her to continue as I had for so many years.  As I later learned, a month is not enough..... for anyone.  Now I strongly recommend 6 months, especially for those for whom Family Based Therapy at home does not work.

FM did receive additional outpatient therapy over the next few years from a variety of therapists and then, as far as we could tell, she was in recovery.  Her weight appeared stable; she looked great, actually.   Her eating remained disordered but she told us she was no longer purging.

I have come to firmly believe that ED’s can become coping mechanisms gone awry (I know not everyone fits this profile), are  genetically based biological brain disorders and even linked to other addictive behaviors as well as brain disorders like anxiety thanks to extensive research  of many people who are devoting their lives to the study of eating disorders.  I also now understand that I and so many other parents didn’t cause this.

[Interesting that there now exists (May 2015) a document titled The Nine Truths About Eating Disorders and many of my beliefs are included in that document.]  

I have also learned that our family environment and learned behavior from our own family experiences can provide a climate that may need to be modified  on behalf of our children who have been diagnosed so that the family can become supportive of their need to get into recovery.    

I have learned better ways of communicating thanks to the wonderful work of Dr. Xavier Amador who developed the theory of LEAP and wrote about it in his book, I Am Not Sick, I Don’t Need Help as well as a terrific exercise based on the book The Five Love Languages by Gary Chapman.   I wrote about this communication method and this exercise in an essay about communication on my blog.  And, I learned about the success of the Maudsley Method that encourages refeeding at home coupled with Family Based Therapy, otherwise known as FBT.  I first learned about this method after I discovered Laura Collins's book Eating with Your Anorexic on the shelf in the University of Arizona bookstore.

In the early days we parents turn to therapists and other practitioners in the field of eating disorders – relied on them, actually --  to help our offspring get on the path to recovery.   I also have believed for a long time that FM’s recovery depends on a team effort that includes family members.  And, as Dr. Janet Treasure in England and others are helping the profession to understand, this disease turns a family and its members upside down and inside out. 

By the time we get to therapists with our loved one, many of us are frantic with worry.  Not only that, but our family dynamics seem to be abnormal because everything and everyone is in disarray.  For example, there have been times when I thought I would die of sadness and pain because of my FM’s illness and my seeming inability to do anything to help her.  I was labeled overly enmeshed.  How could I not be?  How could anyone not be?  Many parents develop Post-Traumatic Stress Disorder.  I certainly did.

The team approach/family based therapy hardly existed as recently as 2004.   That’s when FM descended again further into her own hell, finally cried out for help from us, and we launched a concerted effort to help her in any way we could with what we knew at the time, which wasn’t much.  Thus began a series of several residential treatments and many hospitalizations, one occurring a few years ago and lasting about six months of in-patient treatment -- at her request and with her initiative – a major step forward.  A more recent placement at the same location lasted shortest of the lot (less than a couple of weeks) for she was re-admitted only to rebel (as many with ED do) and be discharged for being non-compliant.  The facility has since indicated they are unable to treat her.  What in the world can be done when this barrier is erected?  Just give up and let the person die?  No.  Not on my watch. 

Support for the care-er was non-existent in 2004 when my family member first went into treatment at a local well-known facility.  The family, as many of you know and perhaps learned during your training, was considered for many years and still by many to be the incubator for eating disorders, the mother being especially culpable.  This is a myth.  In fact, FM emerged from the first long-term residential experience with the conviction that pretty much everything was all my fault.  That facility has since re-examined all of its theories and practices to involve family members more and to work with them. However, after that first experience with Family Week, I lived under a cloud of guilt and blame until several things happened over the next two years.

 

The first was that two independent psychiatrists diagnosed FM with a co-occurring mental illness and emphasized, as well, a present and overwhelming depression and anxiety disorder.  What I had been suspecting for years – since FM's teens, actually, was finally being understood.  Not only that  but I did not have access to the same earlier diagnosis, unfortunately.  [I learned this years later in an authorized two-way discussion with the therapist who had worked with FM in 2004.]  Whether I could have done something or not, I do not know.  The diagnosis then was avoided by many in the field and believed to be impossible to change.

In 2007 thought I no longer needed to feel weird each time I spoke up and asked, “don’t you see something else? Something isn’t right. Please spend time with FM.”   In fact, more than 65 percent of people who develop eating disorders have a pre-existing anxiety disorder.  Since characteristics of the Autism Spectrum run in our family, that may be a factor, as well.

The second was that a friend of mine suggested I attend a Family to Family several week course offered by the local chapter of the National Alliance on Mental Illness, better known as NAMI.  This course provided me with phone numbers, information about what to do in a crisis, a better understanding of the brain and of mental illness, what resources were available in our community including a wonderful local resource called SAMHC, and an understanding parent group to which I came and they came for support.

The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed because I continue to periodically sit in waiting rooms.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics rather than the original medications that are critical for their state of mental health... or no longer are taking any medications at all because they have been dropped from the AHCCCS roles and cannot afford the cost.  Often, these generics aren't the same as the original medication.  My doctor explained that the drug companies that make the generics have the leeway of anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  There have been draconian funding cuts to the behavioral health agencies that provide services, as well, so that more of the slack has had to be addressed by our local police and fire departments.  Fortunately we now have something called the Crisis Response Center.  Unfortunately, often these same people are stabilized and released back on the street again with little support to continue their treatment on the outside, especially those who have been mired in their illnesses for some time.

The third was that I joined Al-Anon.  I was unable to find an ED support group for family members of those with eating disorders.  This group and the people on  (that no longer exists, I believe) “Something Fishy” listserv literally saved my life.  Something Fishy disbanded.  However, F.E.A.S.T. also maintains a site called Around the Dinner Table.  We shared and continue to share our experience, our strength and our hope.  Not everything applies but a lot does.  As the saying goes, “Take what you need, and leave the rest.”

And fourth, I was referred to an excellent therapist who took me on as her patient and has continued to work with me so I could/can develop tools and behaviors that  help me in my role as advocate.  Her guidance also helped me to replace my ingrained at times unavoidable - given my FM's physical health - and hysterical involvement with healthier boundaries. 

After my FM returned to her destructive behaviors after one four-month period of treatment and before three more recent treatments (the most recent being a full year), I despaired and my therapist referred me to a psychiatrist who interviewed me at length, has been following me for more than three years, and who prescribed two medications (one of which I no longer need to take) that with our joint tweaking has helped me deal with this ongoing and other situations within my family, including the increasing ill health of my mother and her eventual death in 2009 and its aftermath.

Prior to pulling all of these resources together, I would go to bed at night and feel my heart beating raggedly in my chest.  I wasn’t sleeping well.  I was terrified that at any time I would receive a call that my FM had died.  Truthfully, I still know that this phone call or visit might happen.  FM insisted on living separately after the first two-month residential treatment experience in 2005 - the parentectomy thing.  For a time, every time I heard a fire engine or saw an ambulance, knowing that my FM had called these for help on many occasions, I would think the worst.  I had been overwhelmed watching my FM’s sabotage of her self.  My marriage was suffering.  I knew I had to do something. And I learned that, like many people in a similar situation, I was suffering from post-traumatic stress disorder and I needed to get help myself.

I began to read and learn.  I read all the materials I could on eating disorders and mental illness.   I acquainted myself with the work and online materials of the National Eating Disorders Association, NEDA.  I began to write about my experiences in dealing with the system here.  I continue to keep a log of everything including all medical records and emails.   Later I became aware of the on-line group F.E.A.S.T. 

For those family members reading here, because of HIPAA laws, often those who care for our loved ones never receive critical information from previous experiences/hospitalizations including, for example, the names of medications that are contraindicated or don’t work.  I began to feel comfortable enough with my experience to share it with other's  – both my mistakes and our successes. 
 

Because FM is an adult, I wrote an essay on my blog that includes steps one can take if one is the parent of an adult with an eating disorder.

This journey has been awful, not only for me but also for my family member.

Beginning in August 2007 after learning about my family member's additional diagnoses, I needed to initiate another Title 36 episode because no one else who was knowledgeable about the situation would.  The only other time one had been initiated was by two doctors at the hospital to which she was transferred from the first treatment facility in 2004  She had been dismissed (ejected is a better word) from treatment by an ED residential facility for non-compliance (so common, especially for the first month or two in treatment). I began to live in my car (so it seemed) for hours each day taking FM at her determined to get well request to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. in order to be admitted to treatment again.  It was not safe for FM to drive herself.

 

I spent a chunk of many days in the waiting room of one of the behavioral health providers here learning by observing, while I waited, about others' experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help FM navigate the system only to see FM fall through the cracks and almost die -- at least four times -- because although she was and continues to be officially Seriously Mentally Ill (SMI) and assigned to a behavioral health agency, due to high turnover of staff at that time no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up or because, characteristic of her illness, she refused to participate or seek treatment.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.   It’s really important that family members ask for their loved one’s consent to do this.  FM gave consent.  Also know, however, that even without consent it is legal and okay to report changes in behavior to your loved one’s doctors and therapist.  Parents are with their children far longer than the hour in the doctor’s or therapist’s office!  Some health care providers really do not like to be contacted but a short note will document the situation, something that may be important to refer to later.  Again, refer to that truths document.  

I continue to worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help and would not have gone there in the first place if they didn't (I know this happens; I saw it happen.  Parents need advocates.  So do adults.).  

I know there are still [2016] hospital staff here that simply do not understand eating disorders -- imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated for FM (learned at the same hospital during a previous ER admission and in their records) only to send FM into an extreme panic attack (this is called a paradoxical effect)  that culminated in an escape from the ER with an IV still in place?  Note that even getting into the ER and staying there was a hugely scary undertaking for FM.  FM walked two miles home.  I had left the hospital earlier after being reassured that she would be spending the night there and was fourteen miles east of the hospital when I received a call from the hospital on my cellphone telling me that I was observed picking FM up after her escape.  As you might imagine, I was shocked by the false accusation, furious at the staff,  and I did not sleep well that night wondering where she was and how she was until she called me the next day.

Can you imagine sleeping on the floor overnight in a cubicle in a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to Title 36 procedures in the first two years or so - actually not really being aware of what Title 36 offered, I did that and several other things until I realized I'd run out of options and the doctors on staff just didn't "get it".

I know things can be better because one hospital here stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  Now that hospital's psychiatric ward has been closed and the hospital's related longer-term facility has also been closed due to  lack of funds.  Fortunately the Tucson area now has the Crisis Response Center, the centralized place for anyone in mental health crisis to go for help.

There was a behavioral health provider team (her team) in action here that went to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is difficult to obtain through the county system and as we know very expensive for the amount of time that should be spent in a facility to recover the lost “self” and the lost ability to feel hunger and/or fullness, among other issues.  Residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  Read the most recent legislation update here.   NAMI is very active, as well, to obtain parity with coverage of other illnesses.

Take note:  there is precedent in the State of Arizona now of treatment arranged and paid for by a government agency for an adult.  There is a long-standing precedent for treatment paid for a child under the age of 19.  Private insurance companies should, in my opinion, follow suit.  Whether funding is available is, of course, another factor.

If the hospital I referred to and my family member's first formal team can learn and change, so can others.  But, it takes resources. The AED has published a booklet that can help.  Distribution is desperately needed.  [See list on the right side of my blog for a link to AED and directly to that booklet.]  

Freelance Science Writer Carrie Arnold recently completed a comprehensive book about ED titled Decoding Anorexia:  How Breakthroughs in Science Offer Hope for Eating Disorders.  This book could/should be required reading for all in medical school and further by all in the field who treat or might treat someone with an eating disorder.  This book is especially valuable to parents and to those adults with the illness who are determined to recover.

However, I realized that no matter how much I learned and understood, the bottom line was that FM, an adult, needed to come to the conclusion herself that she needed help and that she needed to ask for help. In fact, she does ask for help only to succumb to the effects of her brain disorder that sabotages what her "self" so desperately needs.

Unfortunately, the act of asking for help immediately characterizes her and others as not a "danger to self" and yet she and they are a danger to self because the (as I just wrote) this brain disorder sabotages what her "self" so desperately needs.


A few years back a respected member of the medical profession - a pediatrician - also succumbed to this disease.  A doctor.  Someone knowledgeable about the workings of the human body and brain.  Does not this tragedy indicate how deadly and distorting of reality this disease can be?

FM was officially declared Seriously Mentally Ill for the first time in early 2005 and was court-ordered into treatment as I wrote earlier, following Title 36 procedures instituted by wise doctors at the hospital to which FM was transferred from the first residential facility that ejected her after only a few days in late 2004 when she refused to accept treatment and follow procedures.  She became eligible for a variety of services.  Although she became and continues to be a client of a local behavioral health provider, at that time she slipped through the cracks and because of HIPAA laws, as I stated earlier, I was unaware of several things until a crisis developed.   

As well, because eating disorders were - actually, are -- still not well understood, assumptions regarding my daughter’s abilities and state of mind were incorrect and she received substandard care.   In other words, she could present herself as knowledgeable and “together” but, in fact, she could not sustain this state given her health, both physical and mental.

As I indicated above,  her behavioral health team continued to engage with her for her ongoing treatment.  Getting there took a lot of effort by all members of her team, including me.  I did not hesitated to speak up, provide materials, and advocate for her.  She has a different team now that operates under different circumstances.  

However, I learned early on that in spite of a court order that in this case was still in place, a family is often left to make decisions like petitioning again under Title 36 for involuntary evaluation.  Each time I have petitioned, I’ve wrestled with the decision knowing not only would this course of action infuriate her (and, of course, it did), it might also limit her possibilities later in life.  Yet, I believed, the step would save her from herself and hopefully save her life.  I also learned that in spite of petitioning and seeing red flags everywhere, it’s possible for a petition to be denied anyway.  Hers was dismissed at a critical time.   I experienced what it was like to come upon the results of a desperate act that I knew was coming (2009).  

As an important aside, please advise your client’s family members that they should not under any circumstances go alone to their loved ones place of residence when they suspect that something bad has happened.  Call 911 and explain the situation and ask for a welfare check.  Or meet the officer or team but wait outside.

Things became worse after that episode that was followed later by hospitalization when her weight and physical state had plummeted even further.  Imagine needing to call a lead person of the oversight organization personally to intervene to get your family member admitted to treatment in local facility and then finally hospitalized only to experience the horror of learning your daughter was treated incorrectly in the hospital, after one horrendous episode of electrolyte imbalance at a local residential facility that advertised itself to treat eating disorders, to the possible point of compete disability? 

This is a point that  bears repeating, especially if your loved ones binges and purges.  Her or his electrolytes can become terribly unbalanced and it's critical that the staff know that your loved one does binge and purge and that blood electrolytes are assessed.  Being provided with just intravenous saline could cause more harm; potassium may also be needed.

Here we are in the Spring of 2016 following one year of inpatient and 3 years of outpatient and FM's eating disorder is firmly entrenched.  Several recent visits to the ER of local hospitals have reminded me that some doctors still do not know enough to recognize, for example, the symptoms of binging and purging even when my FM (and I) have said that she has bulimia.  One of the more recent ER visit and subsequent hospitalization occurred because FM's electrolytes were 2.1 for potassium, 25 for sodium, and low calcium.  She was slurring her words upon arrival by ambulance because her brain was not functioning - a doctor assumed she was under the influence of something.  Only when the bloodwork came back shortly afterwards did the ER go into action and then they almost lost her because they gave her saline solution without potassium.  When her potassium fell further, they realized their error. She was subsequently admitted to the hospital but as has been the pattern, FM demanded to be released two days later.  A similar event occurred only a couple of weeks before at a different ER.  Both facilities have her records.  What's the problem?  For starters Arizona does not legally recognize eating disorders as illnesses to be treated and paid for by insurance.

After a year of merry-go-round of admissions to the crisis center, hospitalizations, and then discharges with nothing gained, I became my FM's guardian in hopes of effecting better treatment for her.  My FM has been in the hospital for almost five weeks.  I am so very grateful that she is being helped.  Plans are being put in place for next steps.  Her weight is gradually approaching enough for her to be thoughtful and have more insight.  But, she's not there yet.  Advocacy has continued to be my full-time occupation.

To wrap up,  I’m going change course and focus on what I wish would be available to every parent whose offspring starts to show signs of an eating disorder.  

Much is summarized in this letter addressed to the parent.

Second, I wish all family doctors and dentists would be trained to know how to detect an eating disorder and what to do about it including what tests should immediately be run.  This information is available in a booklet from the the American Academy for Eating Disorders . I recently received materials that I hope to distribute to local area hospitals.  There's legislation moving through at the national level to address this and other facets of treatment. The organization F.E.A.S.T. - Families Empowered and Supporting Treatment of Eating Disorders -  founded by Laura Collins and currently led by Leah Dean maintains similar information on its website.  The Anna Westin Act is making its way through Congress thanks to the growing support and initial introduction of the legislation by bipartisan legislators, the diligence of countless volunteers, parents, family members all spurred on by the Eating Disorders Coalition.

Third I was delighted to learn in 2010 that the IAEDP began a local chapter here because I believed its presence might speed things up.   Much work needs to be done. There needs to be a list of all qualified and up-to-date in eating disorder theory and practice, including Family Based Therapy, therapists, nutritionists, and psychiatrists.  This list should be available in doctor’s offices and at the least at local hospitals in the social worker’s offices, ER’s, and in school and college counseling offices.

Fourth, NAMI needs to incorporate information about eating disorders into its local efforts and programs.  NAMI need to focus on each state and to work with legislators in states that do not recognize eating disorders as treatable biologically-based mental illnesses (similar to OCD, bipolar disorder, borderline personality disorder [which isn't a personality disorder but rather an emotional regulation disorder] depression, and schizophrenia).  Arizona is one of them.  Those with anxiety disorders, BPD and other mental illness often develop eating disorders.  The two often exist together.  They needed to be treated at the same time.

Fifth, local educational institutions starting at the grade school level should have the NEDA  publications about coaching and for teachers in their counseling offices as well as in their sports departments.

In fact NEDA will send information upon request to any educational institution.  Here is the link to make that happen.  Scan down the page for information on how to do this.

Sixth, Tucson desperately need post-residential and post- in-hospital treatment housing for adults working on recovery.   I think the Haven here in Tucson provides a working model for something that could be developed.  I believe it’s critical to have support services in-house something along the lines of retirement communities but for younger folks whose capabilities are on a higher level, as are most of those with eating disorders.

Finally, we parents need compassion and understanding from the therapeutic community.  It’s frightening and disorienting to watch a healthy young person get trapped in a path towards death.  We need more parent support groups or the knowledge of the existence of parent support groups that meet at a convenient time and often.  I know one of us presenting here sponsors one.  There are guidelines through NEDA regarding how to start one and how to manage it.