: Chère fille de joyeux anniversaire ! :

We know you always deal with your illness with such courage,

but we still wanted to send you a few hugs,

along with rays of sunshine, big smiles,

and a whole roomful of good thoughts!

So think of these words as a beautiful sunset all your own

and the sound of the ocean gently washing the shore…

Let our thoughts wrap you up in warmth and peace

and sit at your side.

So as you imagine yourself in the midst of these things,

remember how many people care about you and are

wishing you comfort and Love.

-Mary Miro

 *Lots&Lots of LOVE to You Today and Everyday! — Mom*Dad*Sis*

 

 

“Illonen St Urho’s Paivaa!”

                     

“Heinasirkka-heinasirkka mene taalta hiiteen!”

          (Grasshopper-grasshopper go away!)

Having Finnish ancestral blood-lines, we take this man-made legend with both some celebratory flare as well as good-natured humor.  Though when I was growing up, St Urho was presented more as a fact– I actually believed there was a real St Urho chasing those grasshoppers out of the vineyards!

And I do remember drinking the grape juice (now we’ve switched to framboise)  having bowls of fish soup (not too memorable taste-wise, but I’ve revised this recipe accordingly throughout the years) wearing something purple, and having a sense of pride in our family’s heritage (rarely did anyone I know growing up have any idea about Finnish culture, let alone being a fellow Finn) ; and how my great-grandparents came to the US, fleeing Soviet conflict to make a better life imbued with “Sisu“ strength.  Imagine too, to my surprise and sense of fellow-kinship when I found out one of my teacher’s was also Finnish and knew this St Urho character, even going so far as to wear the green (representing the grape leaves) and purple and taking the time during chemistry class to shed a little cultural legend to the day!

So you may be wondering what I’m going on about… what does this have to do with eating disorders, has this woman lost her mind completely, gone off on a tangent of sorts? Well yes, and no…

Our daughter has been battling anorexia nervosa since last year, and as most families with young adolescents struggling with ED know- -it’s definitely a challenge, sometimes requiring every last reserve, every ounce of your sanity, energy, finances, etc. to help pull your child through the black hole of this life-threatening illness towards supporting, loving and helping them find their way back to Life, to Hope and Healing.  And it is possible for your child to find their way back towards full recovery, in whatever form that may take that fully supports, treats and assists your child and family best to getting the best care possible.  

Many times as parents when confronted with the diagnosis of an eating disorder, after we clear the fog of our own lack of knowledge having not experienced the illness first hand, and then educating ourselves, we may also feel conflicted by all the advice of those while well-meaning, or touting as “experts”cannot ultimately speak for our individual circumstances and personal family needs, preferences, values and choices.  And as parents, we have the right to make those fully-informed decisions knowing our child best, and not feeling coerced, manipulated, brow-beaten or given endless heavy-handed black/white-right/wrong ways of fighting this illness and finding the best treatment options for our child– whatever it takes.  You, as the parent, will know what is best for your child and should not have to feel guilty or at fault, or having failed , or less of a parent in any way for your choices towards making treatment possible and suiting your individual childs’ needs as well as that of your family.   

However, not making a decision or acting towards taking a stand against your childs’ eating disorder/illness will only dig that black hole even deeper, and really no one suffering with this illness or their families should be alone in finding help and the care they deserve.   There is help, support and resources available, but since eating disorders are still relatively incoherently and inconsistently treated, and in many instances not adequately covered by insurance for long-term outpatient treatment/services, let alone intensive residential treatment options when necessary, we as parents must take a stand, advocate for our children (and ultimately all those suffering from an eating disorder) and be the “squeaky wheel” in our child’s treatment plan. 

Even when your child is at a “safe” stage within his/her recovery, as parents we know there is no looking back– our lives have profoundly changed, ED is not a welcome guest, yet at your childs’ most vulnerable moments, the disorder will work so damn hard at trying to stay and undermine progress– Health and Recovery.  Recovery takes time, patience and perseverance.  It requires us as parents to listen, be present, and support our children yet also allowing them to take ownership of this process without being left on their own, and with ED’s it’s a complex balancing act because we love our children and want to keep them safe, but at the same time cannot force the process on our terms, or by what we feel when they are feeling something completely other– recovery does have to be ultimately theirs, they will own it, and feel the triumph of success everytime ED rears it’s ugly head and they can face these challenges with courage, resilience and continued strength.  Slowly dismantling this pernicious illness, as Lee Wolfe Blum pointedly states: “protect your recovery”…. like the patron St Urho, chasing after either the original mythical frogs or later the grasshoppers; I think there are a couple of translations that have the word “hell” added to the chant.   

We Finns celebrate this day every year at this time in March, (some corners of the globe even have a dance ritual they gather together to enjoy– very interesting!) but this year something about St Urho’s Day brought an even more striking meaning to me personally with his image holding up the trident with a captured grasshopper, I was instantly struck by the power of this statue/image minus the grasshopper(s):  “ED- ED, get the hell out!”

-May the spirit of this St Urho’s Day be with you all!

Three Cheers- A Seven Year Slump is Slowly Moving Forward

“It’s about opening up the doors and ending the shadow of discrimination against the mentally ill.”

-Patrick Kennedy 

Today’s news is quite uplifting.   And the 268-148 vote does speak to the dire need to continue towards enacting mental-health parity and mandating health insurance coverage equal to that of physical illness for mental health  and addiction.  I think Paul Wellstone would be encouraged to see some progress being made after nearly a decade of back and forth bi-partisan bickering and huge corporate influence , (and currently, to no one’s surprise, big-ph-arm Eli Lilly  is really throwing a tantrum!), to strangle this vital legislation.

And there are plenty of critics who are rallying this victory as “mental-health insanity” and clearly looking only at their own financial dunk, but it’s truly time to stop stigmatizing those with mental illness who clearly need the same standard of quality care and treatment that any sane society would not withhold or financially ruin one with personally while working towards full health, healing and recovery.

I, unfortunately live in a state that does not currently have mental-health parity- yet.  But I was impressed to read an in depth study done last spring by the La Follette School of Public Affairs in our state, that despite not having all the conclusive data to make absolute recommendations regarding mental-health parity, has incredibly convincing and thought-provoking details putting to bunk some of the primary reasoning against implementing mental-health parity that I would encourage anyone interested in advocating for mental health disparity to read.   These studies really can be applied and adapted for further critique and implemented across all states, so that we will eventually see more than thirteen states that have adopted mental-health parity law.

-shanti

: Tending and Befriending-Let the Cup Overflow :

 

It’s a day filled with LOVE– 

Voltaire wrote:  Love is a canvas furnished by Nature and embroidered by imagination which is such an eloquent phrase, and so affecting to me having a daughter who is courageously challenging her anorexia- and winning back (embroidering)  her true self each day.  

Those of us with a child, family member, and/or friend who are suffering with an eating disorder know we have to be both Head & Heart for our loved ones;  it’s a duality that few seem to have the discernment and wisdom to forewarn us about on this journey to wholeness and health.   Most in the medical community still keep us at arms-length when it comes to offering up the most humane, balanced and adequately researched strategies to implement within supporting our loved ones that emphasize such an expanded “imagination” or creativity that not only empowers the sufferer, but works towards healing the entire family/support network of the sufferer- metaphorically this would require the most sophisticated embroidery needle and elevated imagination that can stitch a warm, comforting Love quilt for anyone to find shelter, solace, comfort and wisdom (and most likely made with fleece).

I also think it’s imperative, absolutely crucial to Love thyself unconditionally, and that dear friends, includes the parents, the extended family members, friends, etc.- your entire collective clan, blood-linked and other surrogate compassionate souls- Tending & Befriending– embracing life as it stands, even making peace with pain, uncertainty and discomfort; all of which we most certainly are no stranger to.

So on this Valentine’s Day I wish for all of you to embrace yourselves, your loved ones with the deepest sense of honor, open-heartedness, self-acceptance and Love–

“You, yourself, as much as anybody in the entire universe, deserve your

                                         love and affection.”

                                                    -Buddha

Joyeuse Saint-Valentin!

                              

                                      

              

                                      

                                   

Impetus for FBT in Treatment of Adolescent Anorexia Continues

It’s encouraging to know that some incredible clinicians are furthering the research and support of the efficacy of Family-Based Therapy within treatment of adolescents who suffer from eating disorders. 

As parents of eating disordered children we know how painful it is to watch our children succumb to this deadly disease.  And what makes things even worse is not having treatment incorporate the entire family to best help, educate, empower and support not only our loved ones, but ourselves as well; and also to help heal and guide the family through the journey we take on the road towards our child achieving full recovery.

Dr Walter Kaye with the University of California, San Diego is heading probably one of the largest research studies jointly with Stanford School of Medicine to find the most effective FBT, BFT, and placebo controlled trials including more studies into the use and efficacy of fluoxetine (Prozac) in the treatment of adolescents who suffer from Anorexia Nervosa.

Dr Kaye is certainly not the only clinician to take the lead in pioneering this momentum, Dr Daniel leGrange from the University of Chicago, Eating Disorders Program also has conducted a 5yr NIMH study of similar worth, and at this time the data that has been collected is being sent for publication.

Too many today still adhere to a very outdated, erroneous and unproductive notion that dysfunctional families/parents are the sole cause of eating disorders.  Yes, this is the 21st century, and when our daughter was diagnosed with AN last year, not only were we carrying very limited Karen Carpenter knowledge of ED’s, but to our complete shock and dismay,  the hospital where our daughter spent the next 20days- along with the next year of hit&miss follow-up outpatient treatment- had Dr’s, nurses and staff who seemed to be practicing a very draconian and almost at times inhumane form of ED treatment/care with even less experience and knowledge, and horrifyingly no real training and background in ED’s, and how to help sufferers and their families/carers beyond the basic “medical stabalization”.  I never would have imagined through our experience, how backwards and utterly frustrating this road to finding quality, intelligent, evidenced-based and compassionate care would be.

So there is continued reasons to be hopeful and remain optimistic that at some point ED treatment and standards of care will indeed get better, and our voices will be heard, blame will take a vaporizing exit, and efforts and focus will stay centered towards much more rational, ethical, affordable, and compassionate care for ED’s.