Welcome

When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.

Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.

I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]

Travel Guide

If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox. In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture." I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.

Tuesday, March 27, 2012

Guest Post by Marjie Ruth: Can You Be Here Now?

If I had a formula for bypassing trouble, I would not pass it round.
Trouble creates a capacity to handle it. I don't embrace trouble; that's as bad as treating it as an enemy.
But I do say meet it as a friend, for you'll see a lot of it and had better be on speaking terms with it.
~ Oliver Wendell Holmes

Dear Family & Friends of the Eating Disordered (ffed);

For those of you in the area, we will be having a support group meeting this Weds (3/28) at the Hyde Park Counseling Center at 7:00pm. All are welcome. Get there when you can and leave when you need to. The ABA 12-step meeting will also be happening at the same address, same time, different room.

If your a fan of musicals, you may be familiar with the famous tune from The Music Man when Professor Harold Hill sings about trouble..."Oh we got trouble. We're got terrible terrible trouble. Trouble with a capital T and that rhymes with P and that stands for Pool." There are many different ways to deal with problems in our lives. For those with an ED, learning to deal with life's troubles in a healthy way is the biggest challenge of all as it was the inability to handle emotional pain that devolved into the disorder and the continual fear of such pain that strengthens the dependence on the disorder. One of the coping mechanisms stressed in therapy is to stay in the moment. This means resisting the urge to repeat the habitually unhealthy patterns of the past and avoiding the anxiety trigger of looking ahead and projecting a future of fear. The client is encouraged to focus on the present, the here and now.

What I've found is that it's just as important for me to stay in the moment as it is for my loved one. While I'll admit to having absolutely no understanding of the theory of a space-time continuum (Go ahead, Google it & see if you can make any sense of it), I'd like to appropriate the term and give it my own definition. Please bear with me on this as the philosophy major within me of many years ago is about to make an appearance, but I do feel that the subtle nuances of what I'm going to present to you are worth pondering.

When we think about the past, present, and future, we generally tend to visualize them on a sort of time line or in a space-time continuum, if you will. While this is helpful for maintaining relationships between events (those in the past being on one end of the spectrum while future items are on the other), the shortfall of this type of thinking is that it tends to impute equal weight or veracity to both memories of the past and thoughts of the future. And this is a serious fallacy in that whatever is in the past, and this is not accounting for the inaccuracies of memory, are events and experiences that have the weight or value of having already been a present moment--of having actually happened and impacted our reality. On the other hand, anything that we are considering in the future is only a presumption at best, perhaps fanciful thinking at times, and an irrational fear at worst. The future does not yet exist except as a mental construct. We can project into the future and must and should of necessity do so. We are admonished to save for a rainy day as experience has taught us that there's a strong probability that we will have a need for such savings in the future--aka our present moments down the road.

Our past is important for we are inexorably shaped by it. We know that we learn from our past, that history is an important teacher best not ignored. We also know that we can be dogged and tormented by our past. The inability to let go of old hurts, of horrific memories can be damaging and even dangerous. The diagnosis of PTSD (post traumatic stress disorder) is often associated with folks who have lashed out to harm themselves and/or others as a result of the mental anguish they are experiencing from things that happened to them. Growth and development can be curtailed and even halted by the inability to deal with things in one's past. This can be an important component in some addictive behaviors. And the longer one remains entrenched in an addition, the more their past comes to be about the addiction as their life.

Our perspective on the future changes constantly throughout our lives. As a children we naturally tend to be more "present--in the moment" oriented. The younger the child, the less of a conscious, verbally constructed past they have. Everything is pretty much about the here and now. It's only as we grow that we learn to think more about the future, with a variation from culture to culture. In the US, we have a strongly future oriented society. There is great importance attached to where we're going and what we will be doing & getting. The future is generally touted as something that's full of promise. Someday I'll go away to college. Someday I'll be CEO & as rich as Bill Gates. Someday I may even be President. Someday I may get to retire and enjoy life. But many of us have also experienced a future full of tough questions and scary unknowns. Will anyone call and ask me to the prom? Will I be laid off from my job? What will the test results be? Will I ever be free of pain? But if we become obsessed with the future, we risk being labeled as a sci-fi freak or a worry wart or of being overwhelmed with the uncertainty of it.

Our goal in the present should be to strike a healthful balance between the past and the future in order that we might be fully engaged in the present. Appreciation for our personal as well as cultural history and an acceptance and resolution of past hurts can serve us well. And the more we accept ourselves and focus on the present, we can let go of anxiety over the future. There's a saying to the effect that it's called "the present" because it's a gift. And I see it as a gift that we pay forward: each moment in the here and now is shaping and building and becoming our future. So play this thought out...the future is, quite literally, only a figment of our imagination. If we are depressed, we will naturally tend to project that despondency as something that goes on and on. Our mindset is capable of producing a whole world of blues and troubles...terrible, terrible troubles. But that is only our present moment of sadness, of chemical imbalance, of habitually being mired in fear that produces such thoughts. Talk about the future with a Pollyanna personality, and the result will be full of anticipated happiness and "the sun will come out tomorrow" expectations. So who is right?

It's not a matter or right or wrong as neither can control or predict what doesn't yet exist. The future for each will result out of their present, and--like seeds--what is sown in the present will become our future. What that means for all of us is that maybe we've been members of the same club all along but just never looked at it this way. We're all in the FFA - Future Farmers of America, or more accurately--of the World. We are farming our own future. It doesn't mean we'll be attending 4H meetings and milking cows, but it does mean that we can choose to recognize the futility of being so fearful of and weighed down by anxiety over the future. If we take that same energy and channel it into living more fully in the moment, we will find ourselves a bit less overwhelmed and gradually learning to experience the present more fully, which is a very good thing. Not a one of us knows exactly how many moments we will have or have left. That's nothing new, but maybe a thought just newly grasped. That means that every moment is precious, a gift, a present, and full of potential. And it is in and through this present that we each, whether we accept & acknowledge responsibility or not, play a major part in shaping our future as it evolves moment by moment, right here--right now. Live this moment fully and well, and the future will take care of itself.

Nothing I've written here is a major revelation. It's more about a tweak in perspective that can make a difference in our ability to cope, both for us and for our loved ones.
The commercial asks,"Can you hear me now?"
What I'm asking is, "Can you be here, now?"

Marjie Ruth

Thursday, March 22, 2012

The Iron Will - both hers and mine

This essay by Amalia Negreponti was published on the internet in Huffpost Healthy Living two days ago (March 20, 2012).

Her essay is powerful and describes her experience with anorexia.  She also describes her own turning point.


From the essay and one of the reasons why, even in the face of some of the things my daughter says to her caregivers when she is speaking the anger of the ED that so wants to undermine and kill her, she needs love, understanding and support for her to pull her strength together to survive. She does have an iron will and a huge amount of fight in her.  How to call upon that iron will and fight to turn that disease around?

Amalia Negreponti's mother's thought at that time (see below) reflects the struggle that we, my daughter's family, have continued to experience while we have explored and implemented so many different paths available to her to give her a chance to survive.  My iron will not to give up.  Never to give up.  Where there is life, there is hope.

Time and time again my daughter has received one form of treatment or another in a variety of settings and time and time again upon release she has again been overwhelmed by her disease and returned to behaviors that have undermined her life.

"She's going to die, can't you see it?" My usually sweet and gentle yaya was fiercely telling my mother, in a reprimanding tone, "We need to get her to a hospital to be force-fed." "It'll be no use," my mother said, "She'll just stop eating as soon as she comes out of hospital and she won't trust us too. There is no chance she'll survive then. Now maybe we still have a chance to persuade her to eat. If we fail, we'll all die of course." She spoke in a matter-of-fact manner.

  ....I was appalled. My dynamic mother who never gave up, and my yaya, an epitome of rationality and understated chic-ness, would act like figures out of an ancient Greek tragedy all because I wouldn't eat!

Although I still thought my mother and yaya were over reacting to something not that important, I respected their desperation and felt a responsibility toward them because I now knew how much I was loved by them. I made a decision: I asked my mother to take me to my favorite pastry shop in Athens so I could eat one of its "signature" chocolate buns filled with cream. They were huge and I had once adored them.

We almost flew to the pastry shop. By midnight we were still there: myself laboriously still eating the bun and my mother applauding every bite I took, with tears of joy in her eyes. Eventually, I managed to finish it. Every bite was torture.

Every bite I took from then on was torture too. As I slowly, very slowly, grew healthier, I gained some weight. Although I was still too thin and I knew it, I could not sleep, in mortal fear that in gaining this weight and thus regaining my life, I would lose control of it. I would become "normal," therefore mortal, a woman.

In the meantime, I diligently trudged through what would amount to volumes, were it not on the internet, about my illness. I devoured myriad psychiatric papers and observations of actual "cases" which had been hospitalized. It was shocking how nearly all ended in death. Thanks to the web, I was able to heal mentally as well as emotionally. I entered many forums where both survivors, as well as people still battling the disease, were speaking candidly to one another about the disease. I read and I read and I read, until I read myself out of ever feeling so alone and vulnerable, that I would fall prey to this enemy, again.

I used the iron will and discipline anorexia had given me, to master myself. To become one of those who survived the illness. Who beat it. Every moment of my struggle was imbued with the knowledge that I was loved beyond reason by those I loved: my mother and grandmother -- my yaya, whose name lives on through me. Amalia.


We, my daughter's family and friends and team members, now pray that her current placement in a psychiatric institution will give her the opportunity to survive and yet in this first stage her co-occurring brain disorder and her amazing iron will are hampering that possibility. Would that somehow her Higher Power and she connect to start her on her recovery path and that her team there construct the best possible protocol to give her that chance.

Time will tell.  One step at a time.

Thursday, March 15, 2012

What about the "contributing to" part?

[edited an hour later after thinking about this even more]

I spent several days thinking about the title of this post because I wanted to catch attention and at the same time not totally alienate those who firmly believe that "contributing to" in terms of the family is not a factor in the development of an eating disorder.  Note, I did not write the word "cause."

I think "contributing to" can be a  factor.  My daughter thinks so.  I agree with her. Environment is a factor.  Family is part of the environment.  Sometimes the family needs to engage in therapy if only because the family's son's or daughter's brain works differently and so the person needs a different communication or sensory  environment. We are all different.  Not even twins are the same.  Remember that I fought bulimia for more than 15 years and slipped into anorexia at least twice, judging by photos and family recollections.  I know my thoughts in this paragraph are true, at least for me and for my daughter.  I imagine they are true for others.

What has prompted me to write about this again?  I have written about this because the subject keeps cropping up and even dividing groups that all have the same goal - recovery.

 I have written about this issue before in two of my essays:  "Reflections on Communication - Family Week" and "All in the Family and Elsewhere"

Here's the current thinking about what might cause an eating disorder.  This is taken from an NIMH publication titled "Understanding Eating Disorders" .  I could have used a variety of sources but I think many would agree with these basic points that continue to be referenced:

"There have been a number of studies showing that people who develop anorexia nervosa have certain traits in childhood that put them at risk, such as anxiety and perfectionism. If people do not have those traits, they are probably less likely to develop an eating disorder," says Walter Kaye, M.D. He directs the eating disorders program at the University of California, San Diego and also receives NIH funding for his research.

Studies also show eating disorders run in families. But is it nature or nurture, inherited or learned behavior? Studies of twins suggest that genes play a role. To help further research into the genetics of eating disorders, Drs. Kaye, Bulik, and other researchers are collecting DNA and blood samples from people in families where more than one person has anorexia nervosa. NIMH is supporting the research and will maintain a bank of the DNA and cell lines collected, so they can be used by researchers trying to identify variations in genes that affect the risk for anorexia and bulimia nervosa."

I then turn to, as an example and there are others listed here on my blog, all of Dr. Janet Treasure's research and work, too, noting her and her colleague's book - Skills-based Learning for Caring for a Loved One with an Eating Disorder - the New Maudsley Method - family dynamics are hugely important in the recovery of a loved one.

Again, in this context my statement about contributing to is a positive step/thought towards examining the home environment so it will be as supportive as possible.  At the time of the onset of my illness, this did not happen.  Heck, my parents didn't even know about it.  Early on they knew something wasn't right and even hospitalized me but neither they nor the hospital staff knew that I was binging and purging and there was no way I was going to tell them.  Things were going on in my household that were troubling and upsetting.  B/P worked for me. I hated that I was suddenly gaining weight.  Purging soon became a habit and I was vulnerable to that development.   At the time of the onset of my daughter's illness, this examination and change did not happen, either, although I did arrange therapy and then a month's hospitalization for her.  I did not know any better because my own environment growing up was similar.  I did not know the science behind eating disorders.  I figured if I could get well (eventually), so could she because she did have access to therapy and I didn't.  What an error in thinking that was!!!

 I did learn to change.  It involved hard work.   I truly regret my lack of understanding and knowledge and have made it my life's purpose since to learn more and therefore to support and advocate for my daughter for years now.

So, on the thought of contributing to -
The family environment may be wonderful; but the school environment may be awful, either for example due to bullying or due to scholarly expectations that are beyond the person's ability to handle. The family needs to know and/or to find out about this and respond to it as well as to the following examples.  The family may be wonderful; but a person's peer or relative sexually assaulted or raped her and she is hiding the emotional triggering fall-out from that event.  The family's environment may be wonderful but another event - even an activity - in the vulnerable person's life has opened the door to disordered eating that leads to an ED.  Think about hormonal changes, too.  Think about the adolescent developing brain and impulsive behavior.  The family dynamics may be tense because the breadwinner's (or plural) environment may be brought into the house at night.  The family dynamics may be tense because a caregiver is starting to chafe about wanting to make her or his mark in the world and feels trapped.  The family dynamics may be awful because one member (or more) is abusive.  The family dynamics may be disrupted because of divorce and perhaps the continuing bitterness that just might be affecting the vulnerability to an ED.  Divorce itself can be a triggering factor.  The family dynamics may be disrupted because another family member may be seriously ill so less attention is being paid to one - the vulnerable one - who needs it during adolescence.  The family environment may be wonderful but the person is mentally ill and is frightened and confused by what is going on in his/her mind.... and is genetically vulnerable to an ED.  I could continue this list.

Then there's the whole issue of societal norms, changing values, peer pressure, substances abuse and advertising......

My point is that something probably contributed to the appearance and continuation of the eating disorder beyond the genetic component.  Something triggered that genetic component.


So, how to address all of this?

A solution would include helping a person to  manage change.  This link offers some thoughts on this.
If your child is an adolescent or younger, I'd recommend the book Help Your Teenager Beat an Eating Disorder.  The authors, James Lock and Daniel Le Grange have written an excellent resource.  Again, Janet Treasure, Grainne Smith and Anna Crane's book, Skills-based Learning for Caring for a Loved One with an Eating Disorder offers insight to change.  A supportive environment is hugely important, whether it be a home or a residential treatment center or a hospital.  Love is important.  So is the immensely important recognition of the fear that underlies so much of the behavior of a person who has become trapped in an eating disorder.  The knowledge and understanding obtained by attending a conference put on by NEDA or Maudsley Parents or NAMI might help.  A trip to San Diego and a week at Dr. Walter Kaye's clinic might help.  If the family has support and structure and training to endure the hard work involved in treating the child at home using the Maudsley Method, recovery may be possible.  I say "may" because this method does work but not for every family nor can every family manage the complex arrangements that are involved, including, of course, financial support.  Here's the latest on the efficacy of this approach.

Therapy and medications certainly can be a factor but nutrition - meaning food as well as a balanced meal plan behind it to provide things like calories and electrolytes and fatty acids (think omega-3's) and necessary enzymes and vitamins is the first step.  Sometimes it's important to provide supplements but the bottom line is food. 

The  magic bullet, if one can call it that,  is "food is medicine."  The how to get them to eat is the frightening hurdle.  Creating an environment where this can happen is paramount to - using that phrase again - contributing to their recovery.  The environment must not be punitive.  Everything must be done with caring and love for this person, and sometimes that can be very difficult to pull off when the person is fighting every step of the way.     It's very, very hard work.

Sunday, March 4, 2012

Time for a Hike

For a change of pace until the next step in my daughter's care is firmed up (more later on this subject when things settle out including why this path for her recovery was recommended), my husband and I decided to go for a hike on a recently finished section of trail out here where we live on what is called the "far east side of Tucson."

The complex starts at the Loma Alta Trailhead.  We planned to hike the Hope Camp Trail to the Coyote Wash Trail to the Ruiz Trail and back the Hope Camp Trail for about 5.6 miles total.

The Loma Alta Trailhead can be reached by driving east/southeast on Old Spanish Trail (a pretty drive, actually, that ultimately takes one to Colossal Cave).  To get to Old Spanish Trail, we often direct people to drive east on 22nd Street until it intersects with Old Spanish Trail just beyond Harrison Road (Harrison runs North/South).  From there, Old Spanish Trail (which is just a name, by the way, and not a historical road at all) travels past homes on large lots, wide stretches of our desert, and beautiful views of the Rincons to the east, the Catalinas to the North, and the Santa Ritas to the South.  Among the features we enjoy out here are the peace and quiet, the slightly cooler temperatures (we're at 3000 feet and at the same elevation of those who escape to the foothills of the Catalinas but with much less congestion and noise than where they are), and the beautiful views.

We arrived at the trailhead shortly before 11 a.m. --rather late by Tucson hiking standards given that the temperature was already at 70 degrees and the route we had chosen was shadeless.  


Here's Enrique at the start of the hike:

Further along here I am with a rather large Saguaro and of Enrique with Rincon Peak in the background.


And here's the temporary trail map:


We walked up the Hope Camp Trail until the intersection with the Coyote Wash Trail, off and back to the right.  Immediately we saw we would indeed be hiking in a sandy and rocky wash for quite a ways, something neither of us particularly enjoys.

We became increasingly frustrated with the terrain and our slowed pace while hoping we'd see the Ruiz trailhead around the next bend.  However, about a third of a mile from the trailhead by our calculation we encountered bees swarming near a hole in the ground of the wash and decided it would be healthier and safer to turn around, which we did while realizing, of course, that we'd need to retrace our path through the wash again.  [I called the Park Service and reported the bees, which were undoubtedly Africanized.]

Once we got back on the Hope Camp Trail, we headed northeast and eventually passed the other end of the Ruiz Trail.  We noticed the trail came _down_ the slope and figured we would have needed to climb rather steeply, probably, once we'd come to the more south-west Ruiz trailhead off of the Coyote Wash Trail.

Along the Hope Camp Trail we passed a rickety old water collection spot and windmill.

We continued our hike to about a half mile before the intersection with the Quilter Trail before turning back.  We had run low on water, having spent so much time slogging in the sand of the Coyote Wash Trail (I think you can tell we didn't enjoy that part), and decided to call it a day.

I want to hike on up the Quilter Trail towards Manning Camp and hope to keep extending that hike in training for hikes I hope to do later this year, including the Grand Canyon for a friend's Medicare Eligibility birthday hike.  Having watched the wonderful film, The Way, last night, I also am intent on hiking the entire Camino de Santiago sometime in the next year, as well.  Five years ago I thought there might be the possibility of doing this walk with my daughter.  However, her recovery did not happen and now my time to do something like this - meaning the whole thing - is running short, since I'm approaching 70 in less than three years.

We did notice, much to our surprise, that biking is not allowed along this part of the trail.  Neither are pets.



We were surprised because about 18 years ago we rode with a group of mountain bikers up a dirt road on the Rocking K Ranch that merged with what is now the Hope Camp Trail and emerged onto Loma Alta Road.  We remembered this, and the windmill actually, because a few of the guys decided to catapult a dirt mound right before the pavement on Loma Alta and one succeeded in falling and breaking his collarbone.  Quite memorable, that ride.

I'm looking forward to more hikes on this trail with Enrique,  friends Kathy and Nancy...... and others who will be at the Canyon and perhaps in Europe......