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Assalamu Alaikom

Each star a rung,night comes down the spiralstaircase of the evening.
The breeze passes by so very close
 as if someone just happened to speak of love.

 

In the courtyard,the trees are absorbed
 refugees embroidering maps of return on the sky.

 

 On the roof,the moon – lovingly, generously -is turning the stars into a dust of sheen.
 From every corner, dark-green shadows,in ripples, come towards me.
At any moment they may break over me,
like the waves of pain each time I remember this separation from my lover.

 

 This thought keeps consoling me:
though tyrants may command that lamps be smashed
in rooms where lovers are destined to meet,
they cannot snuff out the moon,
so today,nor tomorrow, no tyranny will succeed,
no poison of torture make me bitter,
if just one evening in prison
can be so strangely sweet,
if just one moment anywhere on this earth.
-Faiz Ahmed Faiz

 

Exams are done, the school year finished, award ceremonies to close the term ended with celebration, endless rounds of pictures, laughter, yearbooks signed and plans for “hangin’ out” in the months to come.  Another term ended, time to kick back, enjoy– relax. Summer feels close upon us! 

Our daughter has come so far since last year and continues to move ahead much stronger, healthier and so-so-so much happier– you see it in her dimpled smile, the flash and sparkle in her eyes, and the measured confidence she has steadily gained through her continued recovery, she is more herself vs the eating disorder.  As a family we are once again, becoming more whole, and definitely enjoying less visitation by the unwelcome nuisance- Anorexia.

Too many things we would all rather be doing at this time of year.  Places to go-visit, reconnecting with friends and family from another continent, more concentration on writing and my art… it’s time to take a much needed break– for all of us in our household, I think we’ve all earned it.

Will be back in the early to mid Fall– wishing all of you a very wonderful, healthy and restful Summer!

-shanti

                                        

                                          Shall I compare thee to a summer’s day?

                                         Thou art more lovely and more temperate:

                                     Rough winds do shake the darling buds of May,

                                      And summer’s lease hath all too short a date.

                                                              -SHAKESPEARE-

 

 

While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)? 

Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that  everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?

And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers.  But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness. 

All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.

Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and ”time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong. 

If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!)  Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there. 

Moments like these can also be some of the most magnificent and humbling of points within our human experience …

 I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc. 

And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders.  To make certain adequate treatment is delivered, proper support and resources are available in all demographics. 

Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.

Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.

-shanti

 

 

 

I love how the birth of International No Diet Day began “from a picnic in Mary’s living room” in the early ’90’s and fertilized it’s magnitude world-wide.  Ms Evans-Young is herself a recovered anorexic and wrote the book Diet Breaking: Having it all Without Having to Diet and it couldn’t be a better time than now to let the message sink in– deep and with reflection.

Largesse gives the background on the term: size esteem  which was initially coined by Richard Stimson, husband to a contributing director/writer at the site, Karen Stimson who explains it perfectly:

- Feeling acceptance of, respect for, and pride in one’s body, whatever its size or shape -

But I like this analogy even more highlighted by Cheri Erdman EdD who wrote the book Live Large! and thought about it as a simple yet poignant equation:  Size Acceptance + Self Esteem = SIZE ESTEEM

Either way you think about it, the insanity of dieting, wanting to force our bodies to be a size/shape it was not genetically determined to be– and thankfully so for the beautiful variety of shapes, sizes, colors, we all add to the collage of life, is quite dubious. 

It’s even further magnified when you or a loved one suffer from an eating disorder and are trying to regain your health and follow through with recovery and maintaining wellness in a seemingly endless fat-phobic, diet-crazed, fashion-consumed environment.  Our daughter at times can take on this incessant self-doubt and accusational inquiries about why she has to eat what she has to when others, her classmates, etc. eat less than she does and are constantly discussing “fat” laden topics— it’s enough to make anyone go a little bonkers.  Advertisers, marketing, the health ins field, even health care (hey, let’s face it– those mega-million dollar hospitals that now look more like shopping malls want  to treat the ill business) and the all time winner: the diet industry.

Stuffed and Starved is a title from researcher Raj Patel more about food prices, the global-glut, etc. but I had to think about this a little bit more this morning how it really ties into so many other layers of Life– and will be worth dissecting and playing off the similar as well as dissimilar dualities we can only pretend don’t exist, or just think is someone else’s “problem” to fix, get over, medicate– like the cliched remark I’ve heard countless times since our daughter was diagnosed with anorexia- “why doesn’t she just eat?!”, then the instant turn against parents when our children don’t eat = it’s your fault, you did something “wrong”, etc.

Yes, INDD is a day we find relative and meaningful in our family.  And with the weather reaching low 70’s, sun shining– I think a picnic is just what we’ll do to celebrate this day!

-shanti

  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

Howard S. Hoffman

 

                    We tend to see only what we are prepared to comprehend.

                                         Howard S. Hoffman …On Life

 

 

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-

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!

hearts 

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!

                              

                                      

              

                                      

                                   

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