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  T. Mere-

 

 

I awoke early before the rest of the family this morning to have some quiet time- make some chai, sit out on the deck in the bitter chill, layered in winter-wear.  May 1st it is… our daughter will be turning a year older this month and is fully discharged from the eating disorder program she has had several months of treatment in, both inpatient, residential and finishing with their intensive outpatient program. 

Thinking back to her initial admission in November seems eons away from where she is now.  She’s come full-circle, rather similar to the cycle of the year and anticipated, sometimes even prominent, seasonal changes (this winter was one of the heaviest in terms of snowfall and duration!) that mark distinct, at times mundane or significantly important passages of time. For our family it was one of change, acceptance and movement forward- leaving what does not nurture or support us happily behind.  And with great hope, looking towards the future, but staying as grounded and balanced as possible in the present.

I remember when our daughter’s were much younger and attended a Waldorf school where seasonal change, holidays and traditions were both honored and incorporated directly within the curriculum (such idealism we as parents carried– but so much fun!) and one of the highlights of the school’s year end was the annual May Faire that had Maypole dancing, farmer’s market, crafts… just all around energy, wonderful food, children running, giggling, singing with weaved flower-crowns or greenery in their hair (parents too!) and just an all-around connected sense of community, diversity and optimism– SPRING had sprung! It was a celebration to honor the changing of the seasons, from darkness into light.  Back then our daughter was completely free from fears of food and worries of weight-gain, she couldn’t have been farther from such an ugly menace as ED.

Much time has passed since those pre-K days, and our children grow to find their own unique challenges and strengths– sometimes we are faced with circumstances in our lives that can send one afloat upon unchartered territory, navigating can be difficult, but you find a way back to dry land, solid ground and the comfort of those that love and welcome you; and are there for you “have your back” when you need them most. 

Yesterday after our daughter had a brownie with “sprinkles” I realized she is really making huge steps towards facing the ED demon head-on, and while she won’t admit at this point “Wow! I just loved that brownie– Yum, yum!” she is taking what is presented to her each day, much more consciously than five months ago.  Perhaps not always with her trademark dimpled smile and sparkly eyes, but she’s doing it, and we’re cheering her on!

As I see the small buds on the apple and cherry trees grow in size each day, and the striking presence of the yellow daffodils dot the yard along with the tulips beginning to take on their dark hues; I feel on this first day of May that we’re finally able to see some Light shine back into our own families’ healing and daily rhythm more akin to life before ED– and that feels so wonderful!

 

                    An optimist is the human personification of spring

                                       –  Susan J. Bissonette

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Oh yeah! May 9th (or from what others have been stating but I haven’t found listed: April 25th) heading to the ‘Windy City’- Chicago to check out this city’s native film-maker,  Darryl Roberts documentary that has gotten plenty of accolades; and additional kudos from those who attended last week’s IAEDP conference.

It’s interesting that within the past year two male film-makers  (perhaps more– feel free to share if you know) the other is Glenn Gers and his film: Disfigured  (which a Cali friend of mine got to see during the film festival and loved)  have dared to dig deeper into our culture’s preoccupations within this topic– I say it’s bloody fantastic and about time!

Join the caravan if you are able.

ciao-

virtaka

 

Facing the bluntness of reality is the highest form of

sanity and enlightened vision… Devotion proceeds

through various stages of unmasking until we reach

the point of seeing the world directly and simply

without imposing our fabrications… There may

be a sense of being lost or exposed, a sense of vulnerability.

That is simply a sign that ego is losing its grip

on its territory; it is not a threat.

 

-Chogyam Trungpa Rinpoche

birds

Let me not pray to be sheltered from dangers

       but to be fearless in facing them.

Let me not beg for the stilling of my pain

       but for the heart to conquer it.

Let me not look for allies in life’s battlefield

        but to be my own strength.

Let me not crave in anxious fear to be saved

        but hope for patience to own my freedom.

-Rabindranath Tagore

-Sarvamangalam!

St Urho                     

“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!

Advocacy

“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

End Health Discrimination
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