Advice for Parents by Doris Smeltzer

What about siblings?

During a presentation last Friday at the New York Comprehensive Care Center Conference an audience member asked, “How are siblings affected? How was your daughter affected by her younger sister’s eating disorder and death?”  I answered the question by telling the story of how Jocelyn had devised a way to save Andrea from bulimia.  She seriously suggested one day, “We handcuff you to me for the next three months!”  I recalled how Andrea had laughed at this suggestion and asked, “How does your husband feel about the idea?” 

I went on to speak of one of the major lessons Jocelyn had gleaned from her sister’s death:  to never put off a kind deed.  I shared how Jocelyn used to send her sister small gifts throughout the year, recalling her own days as a struggling college student.  She had intended to put in the mail a small vial of sparkly fingernail polish and some tic-tacs wrapped with five dollar bills.  She never got around to mailing these to Andrea.  They sit on Jocelyn’s dresser as a stark reminder of the need to show our love for others today as we are not promised tomorrow.

I knew as I finished my stories that I had not answered the attendee’s question.  I meant to ask for someone in the audience to respond with their own experiences but the next question was asked and the moment passed.  Later I pondered how I would’ve responded had I been more prepared.

Our situation was unique.  Both our daughters did not live in the home when Andrea developed bulimia.  Andrea was in college and Jocelyn was a married 25-year-old.  Yes, Jocelyn was affected by her sister’s illness but not in the same way that a younger live-at-home sibling might be affected.  It would seem that this situation might cause a tremendous amount of envy, anger and/or “hatred” because of the continual attention given to the ill child by the parent(s).  There may also be some guilt for these feelings or self-blame if a sibling did not fully comprehend the etiology of the illness.  Just as Jocelyn wanted to rescue Andrea, I would imagine that may be an experience of younger or older siblings while simultaneously experiencing frustration when efforts failed.

The above paragraph is my “best guess” given what I’ve heard from siblings over the years, but I would imagine there are many more ways a sibling might be affected. If you are a sibling of someone who suffers with an eating disorder, please let us know the effect it has had on you.  We would really like to hear about your experience. When we understand the effects we may be better able to discover ways to mitigate them. 

Blessings until next time,

Doris   

My "in a perfect world" desires

In preparing for an upcoming presentation in New York, I created a list of things I would have liked, as a parent, to receive from a treatment team in relationship to our daughter's eating disorder.  They are a reflection of my learnings since our daughter’s death. I am completely cognizant of the fact that had this "in a perfect world" list been my reality it may not have changed the outcome. I share it because back then I had no idea what I needed.

It would have been helpful to me if members of a treatment team had …

1.  Told me that the eating disorder did not intend to go away quietly and that it could take my child with it.

2. Explained to me why my child could not think rationally—educating me about the effects of starvation, bingeing and purging on the brain and body.

3.  Helped me understand that my child could not begin the arduous task of giving up her eating disorder until she was capable of rational thought.

4.  Taught me about the normal changes related to puberty. I did not have accurate information about these changes. I needed to know that a female must increase body fat by 120% for menstruation to begin—that this more than doubling of weight during puberty is a natural, biological process in the female body. This would have allowed me to normalize these changes for my child.

5.  Known that I was experiencing a great deal of denial and guilt about my child's illness—helped me understand that attempting to find the "source" or taking responsibility for my child's eating disorder wasted energy and time and was irrelevant. Reminded me that I did the best I could with what I knew at the time.

6. Explored characteristics in me that mirrored my child’s. Helped me examine and begin to change my own perfectionism, all or nothing thinking, and/or tendency to put the care of others before my own self-care, which would have made me better able to help my child do the same.
 
7.  Modeled and discussed ways that we, as a mother and a father, could have celebrated our own body types.

8.  Been real with me—genuine and emotionally present.

9.  Encouraged me to grieve the family of times past, and the past experience of and relationship with my child. This may have allowed me to focus on the now. Helped me see how as a family we could work together to create a future that included more helpful ways of being in relationship.

10.  Validated for me that pain is a fact of life, but that I did not have to suffer. Helped me develop strategies or find resources that supported me in ways that might have alleviated or reduced my suffering.

Again, these are my "in a perfect world" desires. For a comprehensive list of "rights and expectations of people with eating disorders and their families" please see the World Wide Charter on the Academy for Eating Disorders website at http://www.aedweb.org/public/WorldCharter.cfm

Blessings until next time,

Doris

A response to comments on May 30th posting

I knew that when I began writing my previous post that my meaning might be unclear or misunderstood.  I could think of no better way to present my thoughts, so I decided to post the article and see what sorts of comments were generated in order to see where clarification might be needed.

I am very grateful to the two comments made thus far—they have helped me see where further explanation was necessary.  But first a little background on how I came to the realizations shared last week.

The school district for which I work had asked that I do a presentation to parents on the middle-schooler’s brain and how current brain research could be put into practical use in parenting teens.  Brain research is not a topic on which I am thoroughly conversant so I met with a number of local experts in the field and read a stack of books on the subject.  During my first interview with one of the brain researchers I shared with him my daughter’s fatal struggle with bulimia.  He was sorry for my loss but began talking about the role of “choice” in mental health and mental illness.  My inward reaction was one of anger. I thought, “How dare you insinuate that my daughter had “choices” when ill with her eating disordered behaviors!”

Because I recognized my reaction as having a basis beyond this gentleman and because righteous indignation has never served me well, I forced myself to take a deep breath and ask, “Tell me more.” He did.  And as much as I wanted to reject his words, they made a certain sense.  I then read Dr. Jeffrey Schwartz’s 2002 book The Mind & The Brain.  Schwartz writes about the success he’s had in applying the re-wiring concept of the brain with patients suffering with Obsessive Compulsive Disorder.  Because eating disorders have a large obsessional component, it seemed that the same sorts of brain re-wiring described by Schwartz could be successful with eating disordered patients, with one very big caveat which was beautifully stated in Laura Collins’ comment, “It is necessary to enjoy - literally - full physical health for a long time before true insight and cognitive abilities return.” 

In last week's posting, I stated that before one could begin the “re-wiring” process they must first reach “physical stability” and then did not define what I meant by that phrase.  My definition of physical stability includes having normal vitals, labs, and hormonal levels, while maintaining appropriate weight for the number of months/years needed for return of cognitive abilities. Thank you Laura and Harriet for letting me know that clarification was necessary.

With eating disorders I believe our task is, “not so much to see what no one has yet seen; but to think what nobody has yet thought, about that which everybody sees.” 1

Blessings until next time,

Doris

1 Erwin Schrödinger, the physicist who developed quantum mechanics