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.