Someday Melissa - the film

Less than two weeks ago I ordered the DVD Someday Melissa. The film arrived in our po box today, I brought it home, sat down, and watched it.

I ordered the film for two reasons: one, to support the work of Judy Avrin and the nonprofit created in her daughter's name; and the second, to share this with people who simply cannot "get" what it is like to have an eating disorder, in this case bulimia.

You can read more about Someday Melissa here.

I think what struck me about the film is how accurately it depicted the illness (I fought it for 15 years with a detour to anorexia for four of them and have been in recovery for more than 35 years) and what it can do to the individual who gets mired in it. Viewers are given the opportunity to meet Melissa as a baby and to grow up with her; to learn about her struggles and her questions; to listen to her beautiful yet wrenching prose; and to watch a girl turn into a young woman whose body truly does not betray that she has an eating disorder at all unless a person knew about her illness. One does not see a wasting body - the typical thought that people have when they hear the words eating disorder because anorexia, rather than bulimia, is so closely identified with the words eating disorder.

Many in the medical field still do not understand how deadly bulimia can be.

The viewer also meets Melissa's family and close friends and what they saw and felt. There were certain elements that troubled me but perhaps those were more about me and my experience and what I've seen than about the film.

I won't give away any more of the film. I think it is and will be an important tool to educate the public -- and ED professionals -- about bulimia. Some people make it through to the other side; others, like Melissa, do not. Some people start with bulimia and then move on to anorexia, as well. Others the reverse.

An eating disorder is a medical emergency.

I highly recommend a viewing if you are given the opportunity.

Two weeks of H#!$ and Modeling/ Mirroring

I've attended several Family Weeks at this point while my daughter has continued her journey with the evil ED.

Each time, as I've written before, I've learned valuable tools as well as lessons on how to continue on the journey with my daughter without collapsing in the process.  There are times, like last night, when I've been an emotional wreck after witnessing what can only be described as a complete meltdown -- adult version -- comparable to (for those of you who are parents) a two and a half year old's temper tantrum.  By saying this, I am not in any way attempting to belittle the meaning of the adult's version; rather, trying to illustrate what happened.

One of the lessons I learned and need to remind myself at this point is that when I visit I need to put on a suit of armour that permits me to give all the love and support I can without melting in the process in front of her.  An underlying technique is called "modeling" or providing an example of behavior in the direst of circumstances so that she will hopefully adopt or "mirror"  that behavior.  Our children, from birth, look to us to see how we handle circumstances, both easy and terribly difficult.  They learn to behave as we do.  Many parents can recognize themselves in some of the behaviors and statements their children make on down the road.  Or children can withdraw, because they cannot fathom themselves being able to behave in a way that does not make sense to them.

I am certain that we three kids, while traveling to India back in the 1950's for example, would have panicked if my mother hadn't kept cool, calm and collected (she years later said perhaps she was just in shock and just hung on) when we disembarked from our plane in the Middle East and had to walk through a gauntlet of soldiers pointing their weapons at us.  I do remember this.  Our passports were taken from us and all the passengers were held in a room until our plane was refueled and we were finally on our way again.

Last week I did break down following a hearing and wish I hadn't but I was frustrated more than anything else by the conclusion that a "danger to self" was not included in the description.  Last night, I was able to remain calm until I had left the building and was held by another of the mothers who was visiting that evening.

We do set an example with every one of our behaviors.  The old saying, "do as I say and not as I do" needs to be thrown out the window because walking one's talk makes a difference.  This is why family therapy can be so darned valuable.  Families learn how to behave in the face of the monster eating disorder.  Families learn when they need to take time outs and how to do that.  Families need to learn how to decline (what to say and how to say it) to visit if they simply cannot handle the emotions at that time while present with their loved ones.  I do not mean one needs to be cold.  Far from it.  I got down on the floor, too, and stroked her back.  When I saw that wasn't working, I knew I needed to leave and told her I loved her and would report what was going on to her team.

Being a parent of a person with an eating disorder is really, really difficult.  My heart goes out to all parents who might read this note.  Hang in there.  Research is opening doors and journals like the International Journal of Eating Disorders and the European Eating Disorders Review are making some of  their publications and/or articles available to download and pass along to therapists and other team members to bring them up to date.

Three Excellent Articles from the European Eating Disorders Review, Volume 20, Issue 1

These papers would make a good start for anyone wanting to get an up-to-date report about eating disorders and the treatment of eating disorders as well as related diagnoses.

I am specifically referring to the paper by Janet Treasure et al (Eating in Eating Disorders) ; by Bryony Bamford and Victoria Mountford  (Cognitive Behavioral Therapy for Individuals with Long-Standing Anorexia Nervosa); and Tom Hildebrandt et al, (Anxiety in Anorexia Nervosa and its Management Using Family Based Treatment) .

Or you can simply download the whole issue!!!!!!!!!!!!!!  How wonderful for this journal to make this up to date information available to everyone.

More on Eating Disorders and Recovery from Aimee Liu

Aimee Liu has written a guest post on June Alexander's blog titled, "Moving from an Eating Disorders Half-Life to Your Full Life."

From Aimee's post:

Note to everyone who’s ever had an eating disorder:  we are ALL supposed to enjoy living.
Fortunately, most eating disorder treatment programs today understand this.  They move well beyond the initial and necessary focus on eating and weight to address temperament, identity, self direction, and other key predisposing or contributing issues.

It's great to find this posted today and expands on the material presented in my post yesterday about Aimee Liu's book, Restoring Our Bodies, Reclaiming Our Lives.

Aimee Liu - Restoring Our Bodies, Reclaiming Our Lives: Guidance and Reflections on Recovery from Eating Disorders

One of my favorite books is edited by Aimee Liu and the title is Restoring our bodies, reclaiming our lives: Guidance and Reflections on Recovery from Eating Disorders.

Here is a link to more information about the book.

The foreword is written by Judith Banker, past president of the Academy for Eating Disorders (AED) - the underwriter of the wonderful new booklet for doctors and laypeople alike found here: 

I'm going to quote from the Foreword.

"Not one patient I've ever treated for an eating disorder believed at the outset of treatment that she or he was capable of recovering. Not a single one could imagine being free of the relentless obsessing, the perpetual weight-loss algorithms, the self-loathing, shame or despair that accompany these excruciatingly complex and devastating illnesses."

"....In Restoring Our Bodies, Reclaiming Our Lives Aimee again joins the wisdom of personal experience and the knowledge of research and clinical experts to provide a keenly illuminating, in-depth journey in the recovery process....[This book] forges new ground by walking the reader through the entire recovery process, from the initial turning points at the start of the odyssey to the 'wise minds' that reflect on the experience of reclaiming one's life after an eating disorder." 

The review on Amazon to which I provided the link above states, "Author Aimee Liu has woven together dozens of first-person accounts of recovery to create a break-through roadmap for healing from an eating disorder. Restoring Our Bodies, Reclaiming Our Lives answers key questions including: How does healing begin? What does it feel like? What supports and accelerates it? Will I ever be free of worry about a relapse?

Throughout the book are informative sidebars written by leading professionals in the field, addressing essential topics such as finding the right therapist, the use of medications, exploring complementary treatments, and how family members can help"

I bring this here because already in the commentary response to Dr. Ravin's post titled "Got Hope?" and in blogs like those of Extra Long Tail, Giant Fossilized Armadillo, and Ed-Bites (all shown as blogs I follow, found on the right hand side of this site), people are sharing their own experiences and paths to recovery - what works and what doesn't. An admirable thing, indeed.

For example, Extra Long Tail responds to Dr. Ravin's post (and touches on the points noted in the Foreword to Aimee Liu's book):


I had a relapsing course of restricting anorexia nervosa (AN) for 28 years before receiving any help that was of use. During those 28 years I remained significantly underweight (sometimes dangerously so – i.e. BMI < 13) and as time wore on, my physical state became increasingly compromised. I was 'treated' for some of the physical complications of long-term semi-starvation, yet a number of medical professionals deemed me 'chronic', or stated that I would only get better "when I decided to". 

There was no way that I could get better on my own…. It was not that I didn't know what to eat to gain weight; it was that I didn't know HOW to eat more food without feeling panic-stricken. That level of panic was so great at times that I felt suicidal. And it was not 'about' body image. AN in anxiolytic. 

The key to recovery from long-term AN is de-sensitisation to the panic associated with eating and weight restoration. I have had therapy too, which has been enormously helpful, but therapy without weight gain is pointless.

[***And here is an article about the relationship of anxiety to eating disorders, especially anorexia, published late in 2010 in the European Eating Disorders Review.]

[***And here is a link to an article  by Dr. Janet Treasure and colleagues titled "Eating in Eating Disorders"  with the goal of the importance of eating/supported eating back "into the centre of the eating disorder discourse" that includes a wonderful compilation of knowledge to date.]

We can all learn from them.  I know I can, too, because although I am in recovery from bulimia, my path and my make-up have been/are unique in many ways.  Some things worked for me that might not work for others but other things may.  The more we can read what has been written and presented by those in recovery, the broader an understanding we can gain and the more knowledge there is out there to help therapists, psychiatrists, nutritionists, parents, friends and the person fighting the eating disorder.  

There needs to be more of this and more reaching out to those who fear they are forever entrenched so they, too, can get on the path.

As I've said before, the path is wide. There is room to fall down and get up again. The key is to get up again.

A Terrific summary: How Parents Can Help Their Child Recover from an Eating Disorder

This 8-page document published in 2007 by the Hamilton Health Sciences McMaster Children's Hospital in Ontario, Canada offers a wonderful summary of not only how but also why parents or any team member(s) need to work together to help their loved one recover from an eating disorder.

The booklet provides important topic headings and then a list of the usual challenges that people will face during their partnership to help their loved one recover.

• Guiding principles for parents
• What BOTH OF YOU can do to help your child
• Facing challenges together including nutrition, exercise, emotions, and scheduling

I particularly liked the format of listing the challenges on each of the above four topics and then the discussion about the challenge.

The document's authors also highlight the value of and importance of reading Help Your Teenager Beat an Eating Disorder by Dr. James Lock and Daniel Le Grange, PhD.  The 8-page booklet is a wonderful introduction to the principles provided in Lock's and Le Grange's book.  Highly recommended!!

Post Traumatic Stress Disorder

[Warning:  this may be triggering to those on the path to recovery from an eating disorder.]

The National Institutes of Health website includes a document on Post Traumatic Stress Disorder.

As the article notes, PTSD is a type of anxiety disorder.  It can occur at any age.  It can follow a natural disaster.  It can follow traumatic events.  The causes listed include:

• Assault
• Domestic abuse
• Prison stay
• Rape
• Terrorism
• War

I believe that PTSD can occur to those who are witness to the destructive effects on a family member of serious diseases like cancer and an eating disorder.  One study documented that some family members are still feeling the effects of the trauma of cancer in a young family member 10 years after the event.

Wait, you say.  But eating disorders?

Yes.  Eating disorders are biologically based brain disorders that affect the behavior of people who develop them and affect family members who more often than not become distraught by the changes in personality and physical health that occur in their loved ones.

Yes.  It is believed that eating disorders are the deadliest of all brain disorders .  "Anorexia nervosa (AN), in particular, has the highest mortality rate of any psychiatric disorder.  Risk of premature death is 6-12 times higher in women with AN as compared to the general population, adjusting for age."   Work is continuing to reduce that number and, in fact, the number may have been reduced somewhat by the knowledge that has been gained in the past couple of years including the increasing visibility of family based training (FBT) and what is referred to as the Maudsley Method, first developed at Maudsley Hospital in England.

But, still.

So, to those who leap to the conclusion that a family member exhibiting behaviors that seem like PTSD
Quote from the linked article:
PTSD can cause many symptoms. These symptoms can be grouped into three categories:
1. Re-experiencing symptoms:

• Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
• Bad dreams
• Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.
2. Avoidance symptoms:

• Staying away from places, events, or objects that are reminders of the experience
• Feeling emotionally numb
• Feeling strong guilt, depression, or worry
• Losing interest in activities that were enjoyable in the past
• Having trouble remembering the dangerous event.

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.
3. Hyperarousal symptoms:

• Being easily startled
• Feeling tense or “on edge”
• Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.
It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

---

 or who appears to have  become or is enmeshed with the loved one with an ED, stop for a moment and think about the trauma that a parent especially often goes through when their child or adolescent or even adult child or spouse [only some behaviors are listed here of the many that occur]

• stops eating
• loses weight dramatically
• exercises compulsively, sometimes late at night or in their room behind a closed door
• becomes violent and abusive day after day after day when presented with food and asked to eat
• gets up after everyone has gone to bed and eats everything edible in the refrigerator or pantry and then either vomits the food into the toilet, into plastic bags they store in their bedroom, or into the garbage bin, or in the shower (while the water is running and running and running)
• turns to cutting, drugs and/or alcohol in an attempt to subdue their anxiety when presented with food that to them increases their anxiety when they eat or that helps them get through the cycle of binging and purging
• tries to separate family members such as the mom and dad so they can continue their ED behaviors because one of the parents may not believe the situation is as serious as a medical emergency, which eating disorders are
• drinks water to the point of hyponatremia or purges food and therefore electrolytes resulting in a visit to the ER only to receive an IV that corrects electrolytes and then sent out the door within 24 hours because they are determined to be "stable" even if they are visibly emaciated
• uses laxatives even though either there's nothing in the intestinal tract to process or because they believe the laxative will interfere with digestion and absorption (doesn't work, actually) and again terribly interfere with their electrolyte balance
• is ejected from a residential facility because their behavior is disruptive to other patients and the facility does not have the staff or the treatment area to help them through the rage phase 
• emerges from a long residential treatment only to return to those behaviors
• or even dies no matter what treatment has been available and/or provided

How helpless and angry a parent can feel  when they are blamed for an eating disorder even though in multiple children households no one else exhibits or exhibited eating disorders at the same age or even if they do; when their family is labeled dysfunctional because when they finally seek help they are all torn apart by watching what has been happening; when they cannot scrape together the funds to pay for treatment that may or may not -- after many attempts -- work; when their insurance policy listed as comprehensive only provides 10 days or a month of treatment when research is showing a person needs a full year at least of complete and steady nourishment in order to even get on the path to recovery; when there is no one for them to talk to/with because a support group is not available or they themselves cannot afford supportive therapy to cope with the horror of what is occurring in front of them.

I have touched upon some of this in my essay here on this site.  I am grateful for the support I have found among friends, at an Al-Anon weekly meeting I attend without fail unless I am out of town, by working with a therapist who "gets it" and who has worked with me so I have the tools to keep going, from the people on supportive websites such as Something Fishy and Around the Dinner Table/F.E.A.S.T., and by working with a team of professionals to address the effects of this horrid, horrid disease on my family member.

PTSD is very real among us parents.  It can disable us when the illness goes on for months or even years (and to some parents even a few weeks can feel like a very long time).  If you are reading this and are a professional who is working with a child or adolescent or adult and often seeing his or her parent or significant other in the waiting room, please remember to ask her or him how they are doing and if they need help.  Recommend that they carve out some time for themselves to do something they enjoy even if it's only a nap or a brief walk with the dog or a date with their significant other.  Recommend that if they can afford to, to see a professional themselves.  If you have time, develop a list of  resources for that parent or significant other.

It can be for some a very long road and sometimes the light just doesn't seem to appear.

Hope for those fighting depression?

Help for those fighting depression for which nothing seems to work? 

This morning's Wall Street Journal (January 3, 2012, p. D3) reports that Deplin, a prescription form of the B-vitamin folate, provides L-methylfolate "....which is needed to produce serotonin, dopamine, and norepinephrine, three neurotransmitters that are critical in regulating mood." 

Here's the link. 

 

[coming back later with more details......]

 

 

Laughter is the Best Medicine

For years, I eagerly opened Reader's Digest and read the section titled "Laughter is the Best Medicine."  In fact, eventually a book was published with the same title that contained many of the stories included in that column.  My mother subscribed for a very long time and when she and my father moved here to Tucson, I rarely turned down the opportunity to catch up with the column.

Another proponent of laughter (and a whole bunch of other things that sustained him for years and I believe enriched the world we live in) was Norman Cousins.  I came to know of him because one of my classmates in eighth grade was one of his children.  I also met him, so to speak, through the pages of the Atlantic Monthly (one of my favorite publications for many years) for which he was an editor.  He was also the editor of the Saturday Review in which he once published an article (also appeared in the New England Journal of Medicine) that eventually became part of a book titled Anatomy of an Illness.  The story also became a movie starring Ed Asner as Mr. Cousins.  Here's the movie plot summary.

The effect of his book under the title "Laughter Remains Good Medicine" was also written about in Science Daily.

So, what's my point?

My son, his wife, and their two boys (my grandsons) flew here to stay nine days with us over the holidays.  After a good night's sleep the evening of their arrival, we soon were introduced to -- among many things -- Olivia, which is my younger grandson's favorite show on Nick, Jr.  If you haven't met Olivia yet either through the book  or the show, I invite you to listen to the theme song.

The ten days they were here were packed with laughter, adventures in our yard, trips to fly a model airplane, and photography (we gave our eight year old grandson his first camera which yielded many photos including this one):

We enjoyed a lot of sunshine and fresh air, too, thanks to Mother Nature who provided some of the best holiday warm weather we've experienced in a while. 

One would think that after they left the house was too quiet (true) and sad (actually, not true since the joy experienced here is still vibrating in the walls, I think).

But, oh do we miss them all!!

However, I went to my usual Saturday morning gathering where the topic was dealing with aging and joined several friends in expressing the happiness that comes from sharing time with children.  In spite of discouragement, frustration, and sadness on another front, I realize that I not only feel happier inside, I also am motivated to complete a number of tasks much more sooner than later.  This is a very good thing.  I think laughter had a lot to do with it.